If you had a disease what would you think if I told you there was one organization out there dedicated to creating a worldwide dialogue to help expedite the discovery of a cure and best treatment practices for this devastating disease? What if I told you such organization held an event once every three years that brought together physicians, scientists, nurses, rehabilitation specialists, caregivers and people with Parkinson's disease to one giant conference? Well you'd probably say that would be nearly impossible and likely doesn't exist. That of course physicians have conferences all the time, as do nurses and other fields. Scientists I'm sure also have such conferences and we all know there are conferences aimed at people with diseases, but none that bring all of those areas together. Well I'm writing to tell you that if you have Parkinson's Disease you are in luck! Because the World Parkinson Coalition does just that! It brings all areas from research to people living with the disease from ALL OVER THE WORLD together under one roof for one enormous and incredible conference.
Say what? Yup, you read it correctly and it's incredibly exciting! I for one am a huge believer in the fact that you have to be your own health advocate. That of course we have movement disorder neurologists as well as countless other people on our 'care teams' that are all experts, but nobody is truly an expert in your disease but YOU. You are the one that lives with it day in and day out. You are an expert on what treatments work and what don't, how well you cope with certain things, how your disease is progressing etc... Of course we should rely on the expertise of those people who have studied the field and we do but we should constantly be educating ourselves.
For that reason among countless others I am thrilled at the opportunity to not only be honored with being an official blogging partner of the WPC among 15 other incredible Parkie's around the world but am super pumped about this conference. September 20th-23rd the Parkinsons World will gather in Portland, Oregon for three amazing days of education. I know several people that attended the last WPC in Montreal and they were all blown away with what a valuable experience it was and the opportunity to meet & share with each other as fellow Parkie's as well as the experts. I cannot wait and am anxiously counting down to Portland!
What is also very exciting is yesterday was the launch of the countdown to Portland Podcast series with Dave Iverson & John Palfreman. These podcasts are going to be jam packed with great guests and amazing information to give a sneak peak at some of the topics and sessions you'll be able to experience at the conference. The first one is now live and I encourage you to take the time to have a listen! You can find them at this link: https://soundcloud.com/world-parkinson-coalition
Their website is packed with information from the past 3 conferences and armed with information about their mission and what they do. You can also find all of the WPC blogger's links there as well. http://www.worldpdcoalition.org/?page=BloggingPartners I cannot wait to meet some of these blogging partners in person. I have already gotten to know several of them through their blogs. I'm grateful to them that they chronicle their journeys as well. We can all learn from each other, laugh with each other and maybe sometimes cry too. We all share a common bond and that's what's going to make this trip in September of 2016 so wonderful!
So...... I'll see you in Portland!!!
At 36 years old with two small children I was diagnosed with Young Onset Parkinsons Disease. This is the account of my journey from onset to diagnosis and beyond. I have two choices. I can sit and feel sorry for myself and get worse fast, or I can dust myself off and fight. I think l will choose the latter! So bring it on Parkinsons, bring it on!
Jun 3, 2015
May 12, 2015
If Parkinson's is the gift that keeps giving, find new ways to wrap it up!
Everyone loves getting a present, especially when it's wrapped up beautifully with pretty bright colours or fancy bows... But what happens when the gift you receive isn't something you asked for, or ever wanted? Well, you smile and say thank you because it's the thought that counts and you don't want to be rude....
Well, Parkinson's is the gift that just keeps on giving. Various symptoms hit at different times, some are constant some are not. Regardless new gifts keep coming. None of it's symptom gifts are anything you want but you just need to smile and be grateful because things can always be worse. So instead you find new and unique ways to "wrap it up" to try and make it prettier or work better. You could throw an all out temper tantrum everytime you get a new gift from PD but really, what good will it do? It's not magically going to exchange it for you for something else or give you a store credit. It's non refundable and final sale so you might as well make the best of it.
One thing those of us with PD often do or any other disease or ailment in fact is use it as an excuse to say we "can't". Well you can. The only thing we cannot do is let our non refundable circumstance take the joy away from our lives or stop us from doing things we love. Sure it may be harder or it might take a lot longer to accomplish the same things as before but never give up and say "I can't" without at least trying. Instead find a new pretty way to wrap it up and get doing it again. If you loved dancing before, then dance. If you loved running or cycling or boxing, then do it. If you loved painting or crafting then do it. You may be slower, it may be harder, you might find it challenging more on one day than another but if you loved it before then find a way to love it again. Do not let a disease like Parkinson's or any other steal the joy you used to find in something. There are going to be things you will have to give up and have absolutely no control over and that sucks, but do not let 'it" steal all of the joy from your life. Find a way to make it work in a new way. Your body, mind & spirit will thank you for it and you'll spend a lot less time being angry over the final sale non refundable gift you are stuck with.
I used to love bootcamp and heavy workouts and I've convinced myself over the last year or more that I cannot do it anymore. I've taken up things like running (although I don't do it well Ha!) and other activities that are 'easier' because those body parts work better. This is still a good thing, but that doesn't mean you can't try and do the thing you loved before. Sometimes you need a rotten gift to come to give you the extra push to go out and seek the present you really want. My last appointment with my movement disorder neurologist and the disheartening news that in just under a year I had gotten worse and now have dystonia in my hand was my most recent excuse to throw a tantrum about the crap gift I was just given. I threw myself the best pitty party I could pull together and boy was it a party. It lasted a full week. At the end of that week I realized that pitty party or not I was still stuck with the crap gift I never asked for nor wanted and in addition to it I was feeling like an emotional mess and becoming more unhappy by the day. So at the end of the week I told myself I was being ridiculous. The gift was non refundable and you're simply going to find a way to use it and wrap it up pretty and find the joy again. So, I registered for the bootcamp that I had been telling myself for a very long time I "can't" do. I wrapped up that new present in a pretty pair of sneakers and full of anxiety off I went. And you know what? I "could" do it.... It wasn't easy and I couldn't do it as well or as fast or as strong as I once had, but I could do it. In just one week of 3 rounds of bootcamp I felt more energetic, happier and proud of myself. I was no longer having a tantrum over the gift I was enjoying the new way it was wrapped up!
When life gives you a gift you never asked for and never wanted simply smile and get a pretty bow and get on with it. Get out of the cocoon and try....
Well, Parkinson's is the gift that just keeps on giving. Various symptoms hit at different times, some are constant some are not. Regardless new gifts keep coming. None of it's symptom gifts are anything you want but you just need to smile and be grateful because things can always be worse. So instead you find new and unique ways to "wrap it up" to try and make it prettier or work better. You could throw an all out temper tantrum everytime you get a new gift from PD but really, what good will it do? It's not magically going to exchange it for you for something else or give you a store credit. It's non refundable and final sale so you might as well make the best of it.
One thing those of us with PD often do or any other disease or ailment in fact is use it as an excuse to say we "can't". Well you can. The only thing we cannot do is let our non refundable circumstance take the joy away from our lives or stop us from doing things we love. Sure it may be harder or it might take a lot longer to accomplish the same things as before but never give up and say "I can't" without at least trying. Instead find a new pretty way to wrap it up and get doing it again. If you loved dancing before, then dance. If you loved running or cycling or boxing, then do it. If you loved painting or crafting then do it. You may be slower, it may be harder, you might find it challenging more on one day than another but if you loved it before then find a way to love it again. Do not let a disease like Parkinson's or any other steal the joy you used to find in something. There are going to be things you will have to give up and have absolutely no control over and that sucks, but do not let 'it" steal all of the joy from your life. Find a way to make it work in a new way. Your body, mind & spirit will thank you for it and you'll spend a lot less time being angry over the final sale non refundable gift you are stuck with.
I used to love bootcamp and heavy workouts and I've convinced myself over the last year or more that I cannot do it anymore. I've taken up things like running (although I don't do it well Ha!) and other activities that are 'easier' because those body parts work better. This is still a good thing, but that doesn't mean you can't try and do the thing you loved before. Sometimes you need a rotten gift to come to give you the extra push to go out and seek the present you really want. My last appointment with my movement disorder neurologist and the disheartening news that in just under a year I had gotten worse and now have dystonia in my hand was my most recent excuse to throw a tantrum about the crap gift I was just given. I threw myself the best pitty party I could pull together and boy was it a party. It lasted a full week. At the end of that week I realized that pitty party or not I was still stuck with the crap gift I never asked for nor wanted and in addition to it I was feeling like an emotional mess and becoming more unhappy by the day. So at the end of the week I told myself I was being ridiculous. The gift was non refundable and you're simply going to find a way to use it and wrap it up pretty and find the joy again. So, I registered for the bootcamp that I had been telling myself for a very long time I "can't" do. I wrapped up that new present in a pretty pair of sneakers and full of anxiety off I went. And you know what? I "could" do it.... It wasn't easy and I couldn't do it as well or as fast or as strong as I once had, but I could do it. In just one week of 3 rounds of bootcamp I felt more energetic, happier and proud of myself. I was no longer having a tantrum over the gift I was enjoying the new way it was wrapped up!
When life gives you a gift you never asked for and never wanted simply smile and get a pretty bow and get on with it. Get out of the cocoon and try....
Apr 27, 2015
"The way I see it, if you want the rainbow you have to put up with the rain" ~ Dolly Parton
April is nearly over now and it was Parkinson's Awareness Month. I can honestly say that I am very "aware" of PD! Ha! Ha! This month was full of great video's and information shared by various foundations and PD society's and groups and I sincerely hope it helped educate many about this disease and I hope that momentum continues much past this month.
Only fitting I suppose that I ended it off with a trip to my movement disorder neurologist with my bi annual 700km return trip. This time I had my husband as a chauffeur which was a welcome change to a very long day of being in primarily one position driving, thankfully I was able to shift around in my seat instead which provided some relief to the stiff drive. And thankfully I had him to listen to me be irrational and cry and tell me everything's going to be fine on the way home...
So as you can guess by that, my appointment did not go without some upset. I have been having a lot of trouble with my right hand for quite some time now. In fact it's one of the main reasons I'm unable to work. Holding a pen to write and fine motor skills using my dominant hand have been a struggle. However in the past few months I've noticed it getting much worse. My fingers curling inward and not wanting to be in any position other than that and the pain that originally was near the base of my pinky & ring finger not only moved its way across my hand to my thumb but also is more frequent. It's no longer happening just when trying to use the hand, it hurts all the time. I've read enough and spoke to enough people with PD that I suspected it was Dystonia starting to happen. Dystonia is a neurological movement disorder you can either get on it's own or as a symptom of Parkinson's Disease. In PD it can often happen to the hand, arm, neck or foot. Like many women I like to be right! ;-) However this is one of the times I wish I wasn't. But sadly my suspicions were confirmed with a diagnosis of Dystonia in that hand, why must PD have affected the dominant side of my body? Life would be so much easier if I was either left handed or that was the side primarily affected. In addition to the dreaded Dystonia of my hand it's clear that after just shy of a year on PD meds that my peak on times are just not cutting it. Although the meds work well for my stiffness (once the first dose of the day gets into my system) I can often last 4 sometimes even 5 hours where the stiffness is manageable I have not been so lucky with fine motor skills. I typically only get about 2 hours of peak time for that. So given the fact that my peak's are not where they should be and there's too much 'off' time combined with Dystonia setting in he wants to add another medication to the mix. This time a dopamine Agonist that he thinks may help level off my day and improve my 'on' times and could possibly help the pain and twisting of the dystonia if added to my current Levodopa regime.
To say I was happy or excited about this potential would be far from the truth. I know this is not the end of the world but I am struggling with this new reality. I bust my ass to try and do everything right. I exercise (the only proven way to slow progression of Parkinson's Disease), I eat right, I seek and utilize every possible alternative therapy I can find whether it's covered in our insurance plan or not. I have a 'care team' of doctors, specialists, naturopaths, physiotherapists, massage therapists, acupuncturists and more. I take a sea of natural supplements to help with my PD and symptoms to avoid taking any more pharmaceuticals than I absolutely have to take. I spend a small fortune on all these things to try my best to live well with PD. I work very very hard to be my own health advocate and leave no stone unturned. And yet, in this moment today it felt as though all that was for nothing. Here I sit 11 months after treatment started and already I need another medication to manage my PD and have essentially added another disease/ailment to my repertoire. This is not the way I planned it out in my head when I decided to say "Screw you Parkinsons" and fight this. Don't get me wrong, I fully understand that I have a progressive degenerative neurological disease and I fully understand that perhaps adding this medication will improve my quality of life yet again like levodopa did and from there on in I will maintain where I am for years to come. My logical brain understands all of this and that this is not the end of the world. My emotional brain however is on a completely different track. I would be lying if I didn't say that oddly enough I was far more upset at this news today than I was when I was told I had Parkinson's Disease. I know someone out there is reading this thinking "she is nuts, how could this be worse?". Well I can't really explain it. It just felt like I worked so hard for the last year to maintain where I was and not get worse but despite all my efforts I did anyway and it feels like I failed. I know I didn't and I know I couldn't have done anything differently other than do none of what I did and then I would likely be ALOT worse, but I am frustrated.
So, although it is not something I typically allow myself to do I am choosing to allow myself to suffer. If you read my last post you'll understand this statement. "Pain is a reality, suffering is optional" I choose day in and day out to not suffer, because that is a choice. And tomorrow I promise to wake up despite my morning 90 year old body, wait for my meds to kick in and dust myself off and get on with it again. Get back into "Screw You Parkinsons" fight mode and stop feeling sorry for myself. And I assure you that's just what I will do. But for now, just tonight I'm going to allow myself to be pissed off and to be upset. To cry if I want to, cause after all, it's my party. And I will do it all all while sipping a nice glass of Malbec.
BUT.... tomorrow IS a new day and I will be fine and there will be joy in the morning's rainbow!
Only fitting I suppose that I ended it off with a trip to my movement disorder neurologist with my bi annual 700km return trip. This time I had my husband as a chauffeur which was a welcome change to a very long day of being in primarily one position driving, thankfully I was able to shift around in my seat instead which provided some relief to the stiff drive. And thankfully I had him to listen to me be irrational and cry and tell me everything's going to be fine on the way home...
So as you can guess by that, my appointment did not go without some upset. I have been having a lot of trouble with my right hand for quite some time now. In fact it's one of the main reasons I'm unable to work. Holding a pen to write and fine motor skills using my dominant hand have been a struggle. However in the past few months I've noticed it getting much worse. My fingers curling inward and not wanting to be in any position other than that and the pain that originally was near the base of my pinky & ring finger not only moved its way across my hand to my thumb but also is more frequent. It's no longer happening just when trying to use the hand, it hurts all the time. I've read enough and spoke to enough people with PD that I suspected it was Dystonia starting to happen. Dystonia is a neurological movement disorder you can either get on it's own or as a symptom of Parkinson's Disease. In PD it can often happen to the hand, arm, neck or foot. Like many women I like to be right! ;-) However this is one of the times I wish I wasn't. But sadly my suspicions were confirmed with a diagnosis of Dystonia in that hand, why must PD have affected the dominant side of my body? Life would be so much easier if I was either left handed or that was the side primarily affected. In addition to the dreaded Dystonia of my hand it's clear that after just shy of a year on PD meds that my peak on times are just not cutting it. Although the meds work well for my stiffness (once the first dose of the day gets into my system) I can often last 4 sometimes even 5 hours where the stiffness is manageable I have not been so lucky with fine motor skills. I typically only get about 2 hours of peak time for that. So given the fact that my peak's are not where they should be and there's too much 'off' time combined with Dystonia setting in he wants to add another medication to the mix. This time a dopamine Agonist that he thinks may help level off my day and improve my 'on' times and could possibly help the pain and twisting of the dystonia if added to my current Levodopa regime.
To say I was happy or excited about this potential would be far from the truth. I know this is not the end of the world but I am struggling with this new reality. I bust my ass to try and do everything right. I exercise (the only proven way to slow progression of Parkinson's Disease), I eat right, I seek and utilize every possible alternative therapy I can find whether it's covered in our insurance plan or not. I have a 'care team' of doctors, specialists, naturopaths, physiotherapists, massage therapists, acupuncturists and more. I take a sea of natural supplements to help with my PD and symptoms to avoid taking any more pharmaceuticals than I absolutely have to take. I spend a small fortune on all these things to try my best to live well with PD. I work very very hard to be my own health advocate and leave no stone unturned. And yet, in this moment today it felt as though all that was for nothing. Here I sit 11 months after treatment started and already I need another medication to manage my PD and have essentially added another disease/ailment to my repertoire. This is not the way I planned it out in my head when I decided to say "Screw you Parkinsons" and fight this. Don't get me wrong, I fully understand that I have a progressive degenerative neurological disease and I fully understand that perhaps adding this medication will improve my quality of life yet again like levodopa did and from there on in I will maintain where I am for years to come. My logical brain understands all of this and that this is not the end of the world. My emotional brain however is on a completely different track. I would be lying if I didn't say that oddly enough I was far more upset at this news today than I was when I was told I had Parkinson's Disease. I know someone out there is reading this thinking "she is nuts, how could this be worse?". Well I can't really explain it. It just felt like I worked so hard for the last year to maintain where I was and not get worse but despite all my efforts I did anyway and it feels like I failed. I know I didn't and I know I couldn't have done anything differently other than do none of what I did and then I would likely be ALOT worse, but I am frustrated.
So, although it is not something I typically allow myself to do I am choosing to allow myself to suffer. If you read my last post you'll understand this statement. "Pain is a reality, suffering is optional" I choose day in and day out to not suffer, because that is a choice. And tomorrow I promise to wake up despite my morning 90 year old body, wait for my meds to kick in and dust myself off and get on with it again. Get back into "Screw You Parkinsons" fight mode and stop feeling sorry for myself. And I assure you that's just what I will do. But for now, just tonight I'm going to allow myself to be pissed off and to be upset. To cry if I want to, cause after all, it's my party. And I will do it all all while sipping a nice glass of Malbec.
BUT.... tomorrow IS a new day and I will be fine and there will be joy in the morning's rainbow!
Apr 3, 2015
"Pain is a reality, suffering is optional"
Today marks a year since I first heard those scary six words. "I think you have Parkinson's Disease". I still remember it like a movie in my head, as if I was standing in the corner of the room watching the appointment unfold. It had already been 9 months at that point of having an uncooperative body and endless tests and appointments with no answers. I remember the feeling waiting for my name to be called at this neurologists office that I had travelled 350km to see. I recall the feeling of helplessness and the fear that it would be yet another dead end. The worry that I'd be in limbo forever with no end in sight to get better. But most of all I remember the end of that appointment as I sat nervously waiting for yet another experts take on things. And I remember the feeling as if I had just been kicked in the gut with the breath knocked out of me when he said those six words. Six words that would have never entered my thought process. Two words, Parkinson's Disease, that I knew virtually nothing about. Two words that sounded absolutely terrifying. Two words that would change my life, our families life forever. I remember saying "thank you for not saying I'm crazy" being about the only thing I could get out and his reassurance that no I was not that something was very wrong and how he would have me back ASAP to see his colleague a movement disorder neurologist to confirm his suspicions. Beyond that, I remember desperately trying to hold back tears and being in a fog as I walked out of that appointment all by myself and headed to my car for the 350 km drive home. A long drive with a lot of time ahead of me to try and process this news. With that came with some punching of the steering wheel, some anger filled thoughts of 'why me?' and more tears than I had shed in a very long time.
What I could not have known that day in the midst of all the fear and confusion was just how ok everything would be. How much love & support I would have. I could not have known I'd have an entire community of amazing people in the PD world that would soon comfort me and touch my life in ways I could never put to words. What I could not have known was that life with a diagnosis and treatment would be improved more than I could have ever imagined. That many of my issues would be controlled so well I could get back to living life again. What I could not have known was that despite the moments of fear that I still have about the future, that wonderful things were still going to present themselves in my life. What I could not have known that day was that this wasn't the end of the world, nor the end of the road for me; but simply a new chapter, a new road to travel and a process to figure out what was next.
In 365 days I have become about as much of an expert as possible about PD and a lot has changed. 365 days later I can honestly say that there is just as much good and just as much joy if not more in my life than there was before I heard those six scary words. I wish I had known that would happen on that fearful day, but I guess that's just not the way life works.
I just returned from a conference in Halifax which was fantastic. It was put on by the Parkinson's Society Maritime Region and provided a wealth of knowledge and a room with 200 other people who either have PD or help care for someone with PD. And you know what stood out the most about this room full of people with this disease as I looked around? For the majority of them, likely about 95% in fact; if you were to walk into that room you would never know they had PD, particularly if you weren't 'looking for signs'. This was very encouraging to see and experience not to mention comforting to have so many others to share experiences with and understand each other. A lady by the name of Eleanor Beaton who is a professional women's life coach opened the conference. She spoke about human nature and the stages you have to go through to deal with a catalytic event in your life. (Parkinson's diagnosis, divorce, loss etc...) and many things she spoke of touched home with me. But the thing that struck me the most was when she said "Pain is a reality, suffering is optional". How human nature is to try and make pain go away faster, it's uncomfortable and it hurts and nobody wants to feel it. However it's necessary to feel pain from a catalytic event in order to go through a process of reformation and in turn emerge on the other side. However to suffer is completely optional. To dwell on the circumstances and allow yourself to be miserable about it is a choice you are making that causes you to suffer. I cannot agree more. In the last year I have struggled with the changes forced on my life because of Parkinsons. However, I also think I've worked really hard to deal with the pain my diagnosis brought, as well as the pain from loss of career, loss of friendship and many other emotional pains on top of the physical ones. However through that process I have also worked hard at a refusal to allow myself to suffer. I have made the decision to face my future head on and remain optimistic. To do what I need to do to live well with PD. It's not always easy and I still feel the pain at times but suffering won't make anything better. So it's as simple as that... I choose not to suffer...
So, as this year comes to a close I'm grateful for the opportunities to advocate for PD and to raise awareness that PD is not just for older people. I'm honored that I was able to be a guest blogger with the Michael J Fox Foundation, share my story of equine therapy with the Canadian Parkinson's Society and connect with other people with PD all over the world through this blog. And now, I'm onto the next chapter of my new life with Parkinson's. I am volunteering my time with the executive committee of the PEI Chapter of the PD Society and I have just been elected as a member of the board of directors for the PD Society Maritime Region. I'm also working with the PD Society of Canada as am Ambassador with their National Advocacy Network. All things that I can do at my own pace and ability. My loss of identity I have suffered with from having to give up my career has lessoned. I now have hope that I will be able to volunteer my past professional experience to have both an impact in the PD community as well as feel like I'm still a contributing member to society despite the fact that I'm unable to work. This is a very empowering and freeing feeling and I look forward to these opportunities that have presented themselves to me. Had I chosen to suffer through this experience and like many other people with YOPD remained in the Parkinson's closet, I would not be able to do these things. Had I chosen to suffer I have no doubt I would be in a very poor emotional state. So for all these reasons I am grateful and I have found joy in this past year and look forward to finding more as time goes on.
If you have Parkinson's Disease don't be afraid, don't withdraw, seek support. It might be scary at first but it will have a positive impact on living your life well with PD. Here are some resources if you're in Canada and particular in the Maritimes. If you have YOPD there is a monthly video/teleconference that happens which you can participate from the comfort of your home. You can remain anonymous or come out of the PD closet, which I encourage you to do. There is valuable information shared and often guest speakers in these monthly calls. Feel free to contact me if you'd like, don't do it alone there is strength in numbers!
Previous post 'Parkinson's Disease, not just for old people': http://natashachronicles.blogspot.ca/2015/02/parkinsons-diseasenot-just-for-old.html
Parkinson's Society Maritime Region supports:
http://www.parkinsonmaritimes.ca/inner.php?page=51&sub=76
Parkinson's Society of Canada:
http://www.parkinson.ca/site/c.kgLNIWODKpF/b.3536065/k.6FD8/Living_with_Parkinsons.htm
Michael J Fox Foundation offers webinars, guest bloggers and a wealth of knowledge on a daily basis:
https://www.michaeljfox.org/foundation/news.html
Parkinson's Disease Foundation also has online learning tools & great information:
http://www.pdf.org/en/pd_online_education
And last but not least. The World Parkinson Coalition has amazing information and ressources. If you are able to attend the 2016 WPC conference in Portland Oregon I know it's going to be amazing!
http://www.worldpdcoalition.org/
There are many other avenue's, other bloggers that you can laugh and cry with. So many opportunities to connect with others. If you'd like more ideas, other blogger addresses, information or simply someone to chat with please email me through this site.
You CAN live well with Parkinson's Disease whether you are 37 with small children like myself or much older.
What I could not have known that day in the midst of all the fear and confusion was just how ok everything would be. How much love & support I would have. I could not have known I'd have an entire community of amazing people in the PD world that would soon comfort me and touch my life in ways I could never put to words. What I could not have known was that life with a diagnosis and treatment would be improved more than I could have ever imagined. That many of my issues would be controlled so well I could get back to living life again. What I could not have known was that despite the moments of fear that I still have about the future, that wonderful things were still going to present themselves in my life. What I could not have known that day was that this wasn't the end of the world, nor the end of the road for me; but simply a new chapter, a new road to travel and a process to figure out what was next.
In 365 days I have become about as much of an expert as possible about PD and a lot has changed. 365 days later I can honestly say that there is just as much good and just as much joy if not more in my life than there was before I heard those six scary words. I wish I had known that would happen on that fearful day, but I guess that's just not the way life works.
I just returned from a conference in Halifax which was fantastic. It was put on by the Parkinson's Society Maritime Region and provided a wealth of knowledge and a room with 200 other people who either have PD or help care for someone with PD. And you know what stood out the most about this room full of people with this disease as I looked around? For the majority of them, likely about 95% in fact; if you were to walk into that room you would never know they had PD, particularly if you weren't 'looking for signs'. This was very encouraging to see and experience not to mention comforting to have so many others to share experiences with and understand each other. A lady by the name of Eleanor Beaton who is a professional women's life coach opened the conference. She spoke about human nature and the stages you have to go through to deal with a catalytic event in your life. (Parkinson's diagnosis, divorce, loss etc...) and many things she spoke of touched home with me. But the thing that struck me the most was when she said "Pain is a reality, suffering is optional". How human nature is to try and make pain go away faster, it's uncomfortable and it hurts and nobody wants to feel it. However it's necessary to feel pain from a catalytic event in order to go through a process of reformation and in turn emerge on the other side. However to suffer is completely optional. To dwell on the circumstances and allow yourself to be miserable about it is a choice you are making that causes you to suffer. I cannot agree more. In the last year I have struggled with the changes forced on my life because of Parkinsons. However, I also think I've worked really hard to deal with the pain my diagnosis brought, as well as the pain from loss of career, loss of friendship and many other emotional pains on top of the physical ones. However through that process I have also worked hard at a refusal to allow myself to suffer. I have made the decision to face my future head on and remain optimistic. To do what I need to do to live well with PD. It's not always easy and I still feel the pain at times but suffering won't make anything better. So it's as simple as that... I choose not to suffer...
So, as this year comes to a close I'm grateful for the opportunities to advocate for PD and to raise awareness that PD is not just for older people. I'm honored that I was able to be a guest blogger with the Michael J Fox Foundation, share my story of equine therapy with the Canadian Parkinson's Society and connect with other people with PD all over the world through this blog. And now, I'm onto the next chapter of my new life with Parkinson's. I am volunteering my time with the executive committee of the PEI Chapter of the PD Society and I have just been elected as a member of the board of directors for the PD Society Maritime Region. I'm also working with the PD Society of Canada as am Ambassador with their National Advocacy Network. All things that I can do at my own pace and ability. My loss of identity I have suffered with from having to give up my career has lessoned. I now have hope that I will be able to volunteer my past professional experience to have both an impact in the PD community as well as feel like I'm still a contributing member to society despite the fact that I'm unable to work. This is a very empowering and freeing feeling and I look forward to these opportunities that have presented themselves to me. Had I chosen to suffer through this experience and like many other people with YOPD remained in the Parkinson's closet, I would not be able to do these things. Had I chosen to suffer I have no doubt I would be in a very poor emotional state. So for all these reasons I am grateful and I have found joy in this past year and look forward to finding more as time goes on.
Previous post 'Parkinson's Disease, not just for old people': http://natashachronicles.blogspot.ca/2015/02/parkinsons-diseasenot-just-for-old.html
Parkinson's Society Maritime Region supports:
http://www.parkinsonmaritimes.ca/inner.php?page=51&sub=76
Parkinson's Society of Canada:
http://www.parkinson.ca/site/c.kgLNIWODKpF/b.3536065/k.6FD8/Living_with_Parkinsons.htm
Michael J Fox Foundation offers webinars, guest bloggers and a wealth of knowledge on a daily basis:
https://www.michaeljfox.org/foundation/news.html
Parkinson's Disease Foundation also has online learning tools & great information:
http://www.pdf.org/en/pd_online_education
And last but not least. The World Parkinson Coalition has amazing information and ressources. If you are able to attend the 2016 WPC conference in Portland Oregon I know it's going to be amazing!
http://www.worldpdcoalition.org/
There are many other avenue's, other bloggers that you can laugh and cry with. So many opportunities to connect with others. If you'd like more ideas, other blogger addresses, information or simply someone to chat with please email me through this site.
You CAN live well with Parkinson's Disease whether you are 37 with small children like myself or much older.
April is Parkinson's Awareness Month. Donate, spread the word,
find a cure!
If you're able, please join my Parkinsons SuperWalk team, create a team of your own or make a much needed pledge. http://donate.parkinson.ca/site/TR/SuperWalk2015/MR_superwalk?team_id=2774&pg=team&fr_id=1418
Mar 18, 2015
Snow, Snow & more Snow...
I think I might change my motto from 'Screw You Parkinsons' to 'Screw you Snow'! Ha! Ha!
Well if you don't know where Prince Edward Island is, right about now it's likely unfindable! We have had more snow and storms in the last 5 weeks than I think anyone's nerves can handle. Mother Nature is clearly in a very very bad mood or she needs to go to detox!
My hubby has now been away at work for 70 sleeps... Thank God there are only 5 more to go before he's home for a couple of months... which has left the girls and I home to fend for yourselves for the winter. Usually this brings some unpleasant storms and 'hairy' moments in a winter here but not the end of the world. This last month and a bit however has been a bit nutty. Getting close to the 500cm mark of snowfall for a winter season and breaking records. I'm not sure what the prize will be for this feat? Bragging rights? I don't think it's worth bragging about. Sadly the majority of that snow fall has all happened in the last 4/5 weeks. As I look out the window to the second storm this week I wonder if spring will ever come. I figure if I make it through this winter without booking a bed in the rubber room hotel I'll be doing alright!
Everyone is definitely fed up with white stuff, there's so much of it that there's no place left to put it. I've never seen anything like it. Convoys of plows 3 machines deep trying to make one pass at clearing roads, snow up to people's roof's and banks like mountains consume the island. It's times like these where I wish I were a 'able bodied' person. Shovelling is not something that is within my current ability. Tasks that require arm strength in particular are very difficult for me and with stiffness being the biggest complain in my life with PD this winter has been a challenge, in times scary in fact. When the "blizzard" hit (yes I said blizzard) a month ago my front veranda was overflowing with snow. Too much for a shovel, well too much for this body to try and shovel. The back door broke and wouldn't open & I feared opening the car garage door incase it wouldn't close again. So I frantically did my best to shovel a path from my patio to the furnace vent (which so far most storms has required shovelling every couple of hours if not more in order to keep the house heated). The feeling of being trapped in your own house is very unpleasant and scary to anyone I think. The feeling of being trapped home alone with two small kids and my broken PD body running out of steam for shovelling was terrifying. Thoughts of what if there was a fire, what if I just can't shovel that path anymore, what if's galore went through my head. Aaron would facetime the kids and you could see the stress and worry on his face wishing he was home to help. I did my best to reassure him that we'd survive! ;-)
I try and be a positive glass is half full kinda person. Some days this happy go lucky attitude is a bit harder than others. Today would be one of those days as I woke stiffer than ever. My morning levodopa didn't seem to want to 'kick in' like it normally does. Everything is so stiff it hurts, not sure if it's the shovelling, the not so great sleeps I've been having this week, a flare up or just a bad PD day in general. I missed my appointment with my movement disorder neurologist this week because of the weather and now have to wait a month before I see him again which is just another frustration. But I shall dust myself off of the snow and laugh instead. Really at this point you just have to laugh at how ridiculous all this heavy white stuff is. But one things for sure I have no interest whatsoever in shovelling any more paths. So instead I will make some coffee, most likely spike it with a little Baileys, find some more activities to keep the cabin fevered kids occupied and think sunny, hot, beach like thoughts! Then I may get online and start shopping for an 'I love me Jacket' with some bling on it. At least that way I would have it on hand incase any further storms hit our little island which is now a snow blob in the ocean from the air!
Well if you don't know where Prince Edward Island is, right about now it's likely unfindable! We have had more snow and storms in the last 5 weeks than I think anyone's nerves can handle. Mother Nature is clearly in a very very bad mood or she needs to go to detox!
If you look closely, you'll see the roof of our house which admittedly is a bungalow but it is up on a hill beyond that snowbank from the road!
My hubby has now been away at work for 70 sleeps... Thank God there are only 5 more to go before he's home for a couple of months... which has left the girls and I home to fend for yourselves for the winter. Usually this brings some unpleasant storms and 'hairy' moments in a winter here but not the end of the world. This last month and a bit however has been a bit nutty. Getting close to the 500cm mark of snowfall for a winter season and breaking records. I'm not sure what the prize will be for this feat? Bragging rights? I don't think it's worth bragging about. Sadly the majority of that snow fall has all happened in the last 4/5 weeks. As I look out the window to the second storm this week I wonder if spring will ever come. I figure if I make it through this winter without booking a bed in the rubber room hotel I'll be doing alright!
Everyone is definitely fed up with white stuff, there's so much of it that there's no place left to put it. I've never seen anything like it. Convoys of plows 3 machines deep trying to make one pass at clearing roads, snow up to people's roof's and banks like mountains consume the island. It's times like these where I wish I were a 'able bodied' person. Shovelling is not something that is within my current ability. Tasks that require arm strength in particular are very difficult for me and with stiffness being the biggest complain in my life with PD this winter has been a challenge, in times scary in fact. When the "blizzard" hit (yes I said blizzard) a month ago my front veranda was overflowing with snow. Too much for a shovel, well too much for this body to try and shovel. The back door broke and wouldn't open & I feared opening the car garage door incase it wouldn't close again. So I frantically did my best to shovel a path from my patio to the furnace vent (which so far most storms has required shovelling every couple of hours if not more in order to keep the house heated). The feeling of being trapped in your own house is very unpleasant and scary to anyone I think. The feeling of being trapped home alone with two small kids and my broken PD body running out of steam for shovelling was terrifying. Thoughts of what if there was a fire, what if I just can't shovel that path anymore, what if's galore went through my head. Aaron would facetime the kids and you could see the stress and worry on his face wishing he was home to help. I did my best to reassure him that we'd survive! ;-)
This was after the blizzard, about a month ago... I shovelled a 'tunnel' through to the front door. The kids thought it was fun and I realized after getting through to the other side you'd need snowshoes to get any farther! I've lost count on how many storms we've had since then! There's much more snow there now after a few more storms.
So as the island is now essentially 'closed' yet again I'm now down to one exit of the house and that's the big car garage door. The back door is broken again and won't open, the patio door now has snow up to my waist and the front door well, the snow is almost to the roof there. Thankfully we have many windows we could crawl out of in an emergency, but it's still not a fun feeling. You know there's too much snow when your 6 year old looks out the window and says "Seriously? It's snowing again!!! I think we have enough snow already!" Ha! Ha!
After this week's storm (and hopefully the last of the season) this is me on a snowdrift in front of my house... and yes, that's the roof my head is higher than and I wasn't even at the highest part!
I try and be a positive glass is half full kinda person. Some days this happy go lucky attitude is a bit harder than others. Today would be one of those days as I woke stiffer than ever. My morning levodopa didn't seem to want to 'kick in' like it normally does. Everything is so stiff it hurts, not sure if it's the shovelling, the not so great sleeps I've been having this week, a flare up or just a bad PD day in general. I missed my appointment with my movement disorder neurologist this week because of the weather and now have to wait a month before I see him again which is just another frustration. But I shall dust myself off of the snow and laugh instead. Really at this point you just have to laugh at how ridiculous all this heavy white stuff is. But one things for sure I have no interest whatsoever in shovelling any more paths. So instead I will make some coffee, most likely spike it with a little Baileys, find some more activities to keep the cabin fevered kids occupied and think sunny, hot, beach like thoughts! Then I may get online and start shopping for an 'I love me Jacket' with some bling on it. At least that way I would have it on hand incase any further storms hit our little island which is now a snow blob in the ocean from the air!
Feb 25, 2015
Parkinson's Disease....not just for 'old' people!
What are two things that most people know about Parkinson's?
1. People shake
2. Older people get it
Well both of those statements are both true & false at the same time. If you don't have Parkinson's Disease or don't know someone with PD those are likely the only things you know or assume about the disease. I know, I myself was guilty of those assumptions & that limited knowledge before being diagnosed.
The truth of the matter is that many people with Parkinson's only have mild tremors or perhaps if more severe they are the least of their troubles. In my own case I do have tremors on my right side, it started in my right dominant arm and eventually moved to my right leg as well. I have noticed over time a very small shake starting to happen on occasion on my left hand as well. However, 8 times out of 10 if you see me I will in fact be very 'still'. A combination of levodopa doing it's job and that my tremors are not the worst of my PD problems. Of course I do have some days that are worse than others where someone will notice it, but thankfully they are few and far between (so far). Most likely the times they are bad, I have just had physical activity, not slept well, am stressed, nervous or upset about something. Sadly PD does not allow us to typically hide stress like we once may have been able to do.
As for the second point that older people get it. Well that is true, in fact most people diagnosed with PD are over the age of 60. However there are approximately 10-15% of PD diagnosis which occur in individuals under the age of 40 and 20% diagnosed under the age of 50. This puts us into the category they refer to as Young Onset Parkinson's.
So if tremors are the least of some PD patients issues and someone under the age of 40 or 50 is diagnosed what does PD look like to them? Well, Parkinson's is often referred to like a snowflake, no two cases are alike. Everyone experiences a variety of symptoms often at various stages of the disease. In my case the most difficult part is my gait, stiffness and slowness to get moving. Combined with difficulty with fine motor skills in my dominant hand. My right arm also doesn't swing for the most part when I walk, it essentially appears lifeless. Levodopa is a savior for me in those areas and throughout the day provided I take my meds on time I could easily be around people without anyone ever knowing I had it if I did not tell them. In the mornings however I am at my worst when I've gone all night without medication and am waiting for that first dose to kick in. Mornings are hard, plain and simple.
In addition to those symptoms there are many non motor symptoms that come with Parkinson's Disease. Many times in fact that appear often years before a diagnosis is made as they are perceived to be entirely unrelated issues. If I look back at my life I can identify with symptoms I had of PD back as far as high school which has been 20 years this summer since graduation. Although the various things (including occasional mild shaking in my right hand) that I experienced that far back and in years since I would often chalk off to being something minor and ignore it, or at the very least would never have associated it with a degenerative neurological disease. Some of the non motor symptoms patients can experience are drooling, changes in taste & smell, bladder & bowel dysfunction, insomnia, excessive sweating or a feeling of getting hot flashes, chocking & swallowing difficulties, depression and double vision are just to name a few. I experience almost all of those issues and some of which for many, many years now. However there always seemed to be a logical explanation for them. Hot flashes and sweating at night started after my first child, it was assumed I was starting to go into pre menopause. I have a bladder condition which I have been getting monthly treatments for almost 4 years now by the urologist, it was never assumed to be anything caused by something else. I started to have a reduced sense of smell which is gradually getting worse as time goes on, I basically just ignored it assuming others around me simply had 'better sniffers' than I! You see it's easy to mistake some of these things for something unrelated to PD.
It's been almost a year now since I first heard the scary 6 words "I think you have Parkinson's Disease" and on that day I knew nothing other than old people get it and they shake. I was confused, scared & in shock. Since that day I am much more of an expert with a much greater understanding of PD. Many people with PD experience social withdrawl a combination of embarrassment, fear, denial and depression among other reasons. Others do not understand what they are going through, often do not know how to accept it themselves or how to help or deal with the person who has it which adds to the patients potential for withdrawing. Especially in younger cases where most times you hear they tried to hide the disease from coworkers, friends & even family for as long as they possibly could and therefore stayed out of public or social settings as much as they were able. Then on the other hand there are others who choose to educate themselves and make an effort everyday to not hide in shame and continue on living their life as best they can with PD. Neither road is easy.
I have chosen to accept it and although I have my days of being withdrawn and feeling angry or sorry for myself I do my best to keep them at a minimum and instead 'try' to do something positive with what life has dealt me. I work hard to try and spread awareness that Parkinson's Disease is NOT just an old person's disease and it's NOT only about 'shaking'. I have vowed that I will get involved in the PD community and advocate for people particularly those of us who are young onset and have a very long life ahead of us despite the challenges we may experience and continue to struggle with as time goes on. Sadly when you are first diagnosed there is no handbook given to you by the specialists. No list of places you can turn to for advice or help. No pamphlet to tell you what is going to happen to you and at what stages or what to do about it. We simply are told we have it, trust in our movement disorder neurologists treatment plans and sent on our way. And yet there are great organizations out there that can help us get educated on treatments, trials, how to cope and beyond. There are support groups where you can be in a room or on a conference call with other 'like' people who understand your struggles. There are conferences and webinars and great things that come with technology. However we are left to find all these on our own. If you end up being the person who socially withdraws you can never find these great resources. YOU have to be your own advocate, YOU have to seek these things out and even though they can be scary there is valuable information and knowledge in them.
These are the various reasons why I choose to not be quiet about having Parkinson's Disease. I did not choose to have this and I refuse to be 'ashamed' that I do. There is nothing I did or didn't do to cause me to have this disease. There is no reason why I should be embarrassed of it, or try and hide my symptoms on a bad day so that someone else near me won't feel uncomfortable. I'm not a medical "mess" or "mystery" I have Parkinson's Disease, it's ok you can say it! I may not be thrilled by it but pretending it doesn't exist won't help or change the reality of it. If you think you're 'uncomfortable', well trying being the person with the disease when your really uncomfortable with pain, or stiff and unable to move, or moving too much.
I choose to simply "Shake It Off", do my best to not be bothered by it or others reactions (or lack there of) to my Young Onset Parkinson's Disease!
I choose to be loud, to share information and spread awareness that PD is not just an 'old' person's disease and not only about tremors!
I choose to be an advocate for others suffering with it and although I'm not entirely sure what my role in advocating will look like I will figure it out as time goes on.
I choose to try and get people 'out of the PD closet' & not hide, be embarrassed or ashamed about it!
I choose to try and get people 'out of the PD closet' & not hide, be embarrassed or ashamed about it!
Feb 6, 2015
"Always laugh when you can, it's cheap medicine"
Who doesn't love to laugh? You know that laugh when your belly hurts and you cry from it?
Well, I think humor is a great way to deal with frustrating parts of life. Making light of things and even being the brunt of ones own jokes is sometimes a good way to be. I often crack jokes about my life with Parkinson's and have heard people tell me "oh stop, that's terrible" and so on. But I find it funny. Of course having PD is no laughing matter overall, but if you can't get a good chuckle out of some of the absolutely ridiculous things we Parkie's have to deal with particularly when you're a young onset one then you might as well cry! And who would ever choose crying over a good laugh? Laughter is great medicine for the soul, so yes it sucks sometimes, but have some fun with it!
Here are 10 reason's/ways to have a chuckle despite it all:
1. You have adopted the Taylor Swift song "Shake it Off" as your life's theme song. And if you choose to skip a dose of your meds you can do a mean dance to it without even trying! Not to mention the wicked martini you can shake up while doing so!
2. You love being the center of attention, which is great if you like to workout at a public gym. Seeing how after some vigorous exercise your body is sure to thank you with some extra 'vibrations'. Nothing gets a good stare than everyone assuming you're an epileptic at the weight station!
3. Kids complaining they're bored? Play a twist on hide & go seek with them if your main bottle of levodopa has run out and you're frantically searching for one of the many 'stashes' you have around the house, in the car, your purse etc...
4. You can go visit the neighborhood crazy cat lady and even though the ten litter boxes need to be changed, you can't smell a thing!
5. You help the local economy with your shopping trips. Because when you go to the store for a jug of milk but forget what you're there for you buy one of almost everything. You're sure that one of those items had to be the one you went there for!
6. People will surely laugh when they think you're doing a an imitation of the cat fight episode of Seinfeld where Elaine's co-worker didn't swing her arms when she walked!
7. You seriously ponder getting a new pet for the family and figure that perhaps a wrinkle or bull dog would be an excellent choice so you have someone in the family to have drooling contests with!
8. If winter & snow is getting you down, just pretend you're at the beach when you're enjoying your own private summer because you're so overheated.
9. No need to fret about all those projects that there never seems to be enough hours in the day to get accomplished. There's tons of time to get them done when you're wide awake all night, every night.
10. If you're husband is upset that you have been buying too many new pairs of shoes, just show him the warning label about the compulsive disorder side effect of your meds!
The reality of these things may not be funny if you have Parkinson's particularly if today's not one of your finer days. However there's always time to switch gears from being angry or feeling sorry for yourself to simply find a way to laugh about it! Regardless of your life situation at the moment, if it's less than perfect that's ok, it's life.
When those dreary days hit, find someone to give you a hug, kick you in the rear, pour you a glass of wine (maybe in a plastic wine glass) and have a good laugh with, even if it's at your own expense. I guarantee you, you'll feel a whole lot better and you'll get an abdominal workout while you're at it! After all, they say exercise is just as important as medication if you have PD! So 'shake it off' by 'laughing it off'!
Well, I think humor is a great way to deal with frustrating parts of life. Making light of things and even being the brunt of ones own jokes is sometimes a good way to be. I often crack jokes about my life with Parkinson's and have heard people tell me "oh stop, that's terrible" and so on. But I find it funny. Of course having PD is no laughing matter overall, but if you can't get a good chuckle out of some of the absolutely ridiculous things we Parkie's have to deal with particularly when you're a young onset one then you might as well cry! And who would ever choose crying over a good laugh? Laughter is great medicine for the soul, so yes it sucks sometimes, but have some fun with it!
Here are 10 reason's/ways to have a chuckle despite it all:
1. You have adopted the Taylor Swift song "Shake it Off" as your life's theme song. And if you choose to skip a dose of your meds you can do a mean dance to it without even trying! Not to mention the wicked martini you can shake up while doing so!
2. You love being the center of attention, which is great if you like to workout at a public gym. Seeing how after some vigorous exercise your body is sure to thank you with some extra 'vibrations'. Nothing gets a good stare than everyone assuming you're an epileptic at the weight station!
3. Kids complaining they're bored? Play a twist on hide & go seek with them if your main bottle of levodopa has run out and you're frantically searching for one of the many 'stashes' you have around the house, in the car, your purse etc...
4. You can go visit the neighborhood crazy cat lady and even though the ten litter boxes need to be changed, you can't smell a thing!
5. You help the local economy with your shopping trips. Because when you go to the store for a jug of milk but forget what you're there for you buy one of almost everything. You're sure that one of those items had to be the one you went there for!
6. People will surely laugh when they think you're doing a an imitation of the cat fight episode of Seinfeld where Elaine's co-worker didn't swing her arms when she walked!
7. You seriously ponder getting a new pet for the family and figure that perhaps a wrinkle or bull dog would be an excellent choice so you have someone in the family to have drooling contests with!
8. If winter & snow is getting you down, just pretend you're at the beach when you're enjoying your own private summer because you're so overheated.
9. No need to fret about all those projects that there never seems to be enough hours in the day to get accomplished. There's tons of time to get them done when you're wide awake all night, every night.
10. If you're husband is upset that you have been buying too many new pairs of shoes, just show him the warning label about the compulsive disorder side effect of your meds!
The reality of these things may not be funny if you have Parkinson's particularly if today's not one of your finer days. However there's always time to switch gears from being angry or feeling sorry for yourself to simply find a way to laugh about it! Regardless of your life situation at the moment, if it's less than perfect that's ok, it's life.
When those dreary days hit, find someone to give you a hug, kick you in the rear, pour you a glass of wine (maybe in a plastic wine glass) and have a good laugh with, even if it's at your own expense. I guarantee you, you'll feel a whole lot better and you'll get an abdominal workout while you're at it! After all, they say exercise is just as important as medication if you have PD! So 'shake it off' by 'laughing it off'!
A fitting quote for a Prince Edward Islander!
Jan 18, 2015
Fear based Motivation...
We are all motivated in life to reach goals. Whether they be career, financial, health, personal, family oriented or physical. What those goals are and what motivates you to achieve them can vary greatly.
In my life I've had many goals for various reasons and at various stages of my life and level of importance. In my younger years my goals were primarily focused on that of career. I set various levels of goals in my professional life and I'm proud to say that I had been very successful at achieving them, not without sacrifice such as education, long hours, determination, moving etc... I had personal goals about my own growth like spirituality and working on various aspects of myself that aren't perhaps where I'd want them to be. I find personal goals tend to be something you work on for life. Perhaps being more grateful in your life, more forgiving, less pessimistic whatever it may be. Often these goals are partially achieved simply by recognizing you could use some work in a certain area and then it could be a lifelong commitment to get to where you'd like to be. Then came goals of family, getting married, having children and so on. I'm blessed to say that so far many of my goals in life have been met, I've been blessed & had much joy. There were often set backs or disappointments when some goals I thought I wanted at the time did not come to fruition despite the hard work I put into it. Often I found myself at a later time being grateful such ventures didn't work out because another opportunity that was a better fit would then present itself. You see I'm a firm believer that everything happens for a reason even the bad stuff or the disappointments. Well, you get the point!
What's interesting is when a crisis should hit your life how your goals can suddenly change drastically. Your focus on what's important goes in a completely different direction and your methods for achieving any goals in your life can take on a completely different path. What motivates you to get to where you want to be can suddenly be very unusual. Being diagnosed with Young Onset Parkinson's Disease has definitely changed my outlook on goals, priorities and motivation.
Like many women I've often been motivated physically by a dress size or perhaps a number on the scale. I had fluctuated in sizes many times over my life so far. I'm not one of those blessed high metabolizing women that are always tiny no matter what they eat or do. I've always had to work out to avoid the dreaded belly fat. Oddly enough after having my second child I seem to have finally gotten "it". I finally hit a point in my life where I enjoyed cooking healthy meals, of course never giving up a good slice of cheesecake & still having treats. However I was working out like a madwoman and much to my surprise enjoying it! I enjoyed boot camp and personal training sessions and how strong & healthy I was. It was finally not a chore, it was a new lifestyle that I was actually into and loving it (and what it did to reshape my body too).
I finally found the right balance and lifestyle that I loved only to have the physical part of it stripped away abruptly when my right arm became weak & I became shaky. Fast forward to today and I can honestly say that those 'numbers' whether it be on the scale, a pair of jeans, or a set of weights means absolutely nothing to me anymore. Although it took a while to get there and accept it I'm completely ok with not caring about any form of numbers when it comes to my physical state. My priorities have changed, as have my motivation. Exercise went from being as strong and as fit as I could be and in turn looking the best I could to being 100% and entirely about slowing the progression of Parkinson's Disease. Now I seek out methods of exercise that were never particularly of interest to me like swimming, yoga, horseback riding and running because they are things I'm able to do and are good for various aspects of my disease. Important aspects of my disease like balance, gait, posture & strength. I exercise 4 times a week minimum but aim for 5. I alternate my activities daily so I don't get bored. Mondays & Friday's are cardio/treadmill days, Tuesday swimming, Wednesday Yoga, Thursday riding. These activities not only address issues that are serious parts of PD but they help me maintain my current state of functioning which would still be considered high. They have been proven that regular exercise can actually help the dopamine producing brain cells that remain to produce more natural dopamine. Exercise particularly cardiovascular (bring on running) are the only method's proven to help slow the progression of this degenerative neurological condition as no such drugs exist for that (yet). So yes, I am fearful of what PD will eventually do to my body. So I am using that fear to do whatever I need to do to maintain my current level of living. I am no longer concerned about a weight or a size I am solely focused on not getting worse any faster than need be. That is the one and only reason I now exercise, the one and only thought that goes through my head when I don't feel like doing it.
I also have a new perspective on health as a whole. As I've mentioned before I've never been big on prescriptions unless it was really needed. However I now heavily rely on a pharmaceutical to simply live well with PD. My little yellow friend levodopa makes my life much more bearable than it was pre diagnosis. I can't imagine my life without it and thankfully most people that would meet me would never know I had PD because of it. Provided they never see me first thing in the morning or ask me to cut a piece of paper, write them a note or maybe help them button something during an 'off' time!
All that being said I am now extremely motivated to find alternative treatments to make my life easier. Ways to potentially slow progression but more importantly manage some of the non motor symptoms of PD such as pain, insomnia, bladder & bowel dysfunction, cognitive functions, excessive sweating, swallowing & speech issues and so on. So comes in a couple of things including a tremendous amount of reading and research. I participate in any webinars I can offered by various PD groups, attend support groups, I read more than I think I ever have in my life and I truly focus on being my own health advocate. Nobody knows what I'm going through more than me and therefore nobody can advocate for my health like I can. If you have a disease or ailment I urge you to be your own health advocate. I have the most amazing family doctor a person could ask for and a incredible movement disorder neurologist, with an amazing PD nurse on his team, a fantastic Naturopathic Doctor along with other great participants in my care team. However, none of them have PD so to an extent you have to do some of the work yourself if you truly want to live well with your disease. So trust them, of course you should they are experts, but do your own homework too & listen to your gut!
In addition to exercise, eating well & research I take a dandy cocktail of pills in the run of a day to ensure I feel the best I can for the longest I can. An average of about 20 pills a day to be precise. However only 4 of them are a pharmaceutical, my 4 daily levodopa's.
For those of you with PD feel free to contact me if you have any questions, comments or suggestions for me about them or anything you take. I have come to this cocktail thanks to my movement disorder neurologist and my naturopathic doctor. Levodopa is self explanatory, I take 4 a day (100/25's). Recently I did get a prescriptions to switch the nighttime dose to a higher slow release pill in hopes that my mornings would be a little easier. However due to the fear of dyskinesia (a side effect from too much or long term use of Levodopa) I have not switched to that as of yet and am hoping to hold off as long as possible. Some fear is the bad type! In a nutshell I take 6 Magnesium, 4 Valerian complex which is my miracle natural that has allowed me to finally get some sleep again! 2 Vitamin D, B-Complex SAP (prevents oxidation of dopamine, increases energy & improves sleep), Gaba-T SAP and 2 Enada brand NADH which can increase dopamine production & "on" periods and can help prevent neuronal death which could in turn slow progression. All of this little daily cocktail is important to me and managing my daily life with PD. It can be expensive to sway from pharma to natural. My supplements run me an average of $300 a month. However there is hope for the health world yet. My husbands medical plan has just started covering these things if prescribed by a Naturopath! YAY for that, although it will quickly run out after the first couple months of the year when it hits their max but every bit helps!
So although I don't like to focus on fear that often but rather on the positives, I would be lying if I wasn't in a sense allowing fear to in fact rule my life. A great deal of my energy is focused on self care, advocating for the disease and my own health as well as living well with Parkinson's. I have to, I have two small children and if I don't do the work and at least try everything in my power to maintain my current level of living then what kind of mother am I? Although there are times I feel selfish for what can seem like putting myself first, if I can't self care, I can't properly care for them either. Or at least I won't be able to the way I should or want. So for all those reasons I am indeed allowing fear to run my life and many of my decisions, but I like to think in a good way. Rather than sitting back and accepting this is my disease and this is what will happen; I choose to let the glimpses I have into the future like seeing other PD patients who are much further advanced in the disease and in fact allowing that to scare me.
I need that bit of fear present to work hard and be the best I can be.
I rely on that fear to ensure I am doing what needs to be done so I can be a good mother and wife.
I use that fear to research and educate so I know any advances in treatments.
I am motivated by that fear to keep pushing and not give up.
I am ok with that fear because sometimes fear can be a good thing!
For those of you with PD check out some of these resource's & information about exercise & it's importance to your continued health & living with PD. Most importantly how exercise can actually slow the progression of the disease!
and last but not least for any Parky's living in little ol' PEI check out the video below. The PEI Parkinson's Society is sending someone to NY to study for a week with this woman to in turn bring this "dancing with Parkinson's" program to Islanders.
Jan 7, 2015
Post Op Parkinson's
I ended off 2014 with surgery unrelated to my YOPD. However it certainly did not go without affecting it. I started to be plagued with dysplasia since my early 20's. I had a surgery done many years ago to cut out the bad pre cancerous cells and in turn still be able to have children down the road. It only worked for a period of time before growing back slowly. After having our second child these cells started to grow a bit more aggressively and I was having them checked every 6 months to ensure they didn't turn to cancer. At my most recent test back in February they had started to grow a little more aggressively although still slow. A decision was made at that point for me to have a complete hysterectomy and salpingectomy. In regular terms I had my fallopian tubes, uterus and cervix removed.
Surgery was routine of course for the Doctors. However I knew it would be far from routine for PD when it came to recovery. Although I wasn't even prepared for how tough it would be post op. My hubby and I arrived at the hospital, did all the necessary paperwork and pre surgery talks with anesthesiologist, my surgeon etc... We discussed my PD meds which thankfully they allowed me to take that morning and the fact that I would miss one dose during surgery. Then the time came for me to walk to the OR. I had a sudden flashback of my oldest daughter Samantha having her tonsils out just before she turned 5. I remember how terrified she was and how thankfully they let me take her to the OR. As I walked her into that scary sterile room full of gadgets she was shaking she was so terrified. I tried my best to console her as she sat on the OR table and I held her in my arms as she fell asleep to the gas mask on her face and tears streaming down her little cheeks. I managed to hold it together until she was out and they walked me out of the room at which time I bawled the ugly cry. It had been years since I had had surgery myself, but in that moment of laying on the OR table a terrible sense of fear of the unknown came over me. All I could think of was if I as an adult was this nervous and terrified imagine my poor little girl that day. The last thing I remember is thinking of that and feeling a tear roll down my own cheek as the nurse looked down at me and said "everything's going to be just fine I'll be right here with you the whole time." And with that, I was out.
I woke up in recovery being told how well everything went trying to understand it all in my very stoned state. And soon after that I was being wheeled down the hall to my room where I was to spend the night and leave the following morning for home. I was thrilled to see hubby again and was even more thrilled later that day when he brought the girls to see me. I tried my best to hide any pain I was in and bask in the excitement of Samantha showing me all the lovely homemade cards that her and the other children at the dayhome after school had made for me! I then spent the rest of the evening in and out of sleep and in and out of pain and fairly shaky from all the stress both mentally and on my body.
The nurse I had that night started to discuss with me at one of my BP checks about how they would try and get me up the following morning. I discussed my PD with her and explained that my biggest issue with it is not necessarily the tremor but the stiffness and rigidity that comes with it. How when I even sit in one position for too long my body seizes up and is hard to get moving again. I explained to her that their best chance for me to get up would be 45 mins after I took my morning Levodopa and that I would need two nurses to try and get me on my feet after nearly 24 hours in bed in one position. We agreed I would hold off until 7:30 am for my morning meds (shift change for them) and that would give them 45 mins to get their day going before getting me up. Sadly that didn't happen and it was nearly 1030 that morning before they came to get me out of bed for the first time. Now over 24 hours in a bed and my morning meds long worn off. When the nurse came in and said she was going to get me up I explained to her what I had the night before and how she was going to likely need another nurse to help. She told me that I'd be soar but I'd be fine. I tried to explain that I didn't mean from the surgery but from my PD and how seized up I was going to be. She felt she could get me up on her own, but I stressed that I thought that may be a mistake. She finally agreed and sent for another nurse. With pain I got to a sitting position with my feet over the side of the bed. Then with their assistance managed to get to my feet. I think the majority of my weight was on each of their arms and my right arm tremor was pretty insane. As soon as I got some weight to my legs my right leg started to vibrate. I thought to myself "oh dear, this is worse than I had even anticipated". They then urged me to take a step forward but my right leg was glued to the floor and I felt frozen for the first time since having Parkinson's. I had read about 'freezing' and heard other people talk of this as it's common with PD but I had never experienced it myself. They kept telling me to take a step and all I could say through my shaking right side was "I'm trying, my foot is stuck". Finally I was able to slide my foot forward. I don't think it came off the floor at all, rather just a shuffle forward with the other foot weighting any steps. I have no idea how long it took me to get from my bed to the other side of the room where the bathroom is but it certainly felt like an eternity. After three steps (or shuffles) the RN said to me "so that's what you meant?" I simply said "yes, but I didn't know how bad it would be". For the remainder of the day any of my times I need to get up and out of bed, two nurses came without being asked thankfully. Come 3 o'clock that afternoon I said "so I'm suppose to go home today right?" she smiled and said "ya that's not going to happen".
Thankfully by the time the following morning rolled around and from the multiple times of short stints of sitting up and getting to my feet I was able to walk with only one nurse. Then by about 1030 am the following day I managed to get up and walk although slowly unassisted. My nurse that morning called me an over achiever! Ha! Ha! I definitely threw them for a curve ball that's for sure. The night nurse the 2nd night came in at one point and asked me a whole bunch of questions about YOPD which I didn't mind at all. She told me that they dealt with babies and post partum and gynecology issues, not movement disorders. So she was curious to educate herself and I appreciated the effort and her compassion once she finally saw for herself what I had assumed would happen. When it finally came time that I was given the OK to go home and they thought I was moving well enough unassisted she told me that it had been a pleasure taking care of me. That she thought I was inspiring to talk to given how positive I was and all the things I do to try and keep my PD in check. That given my circumstances she admired my attitude. She was very sweet and in that moment of feeling crappy and being in a fair amount of pain I certainly did not feel in any way shape or form inspiring!
It was a slow road to recovering, PD definitely threw an added curve ball into things that an otherwise healthy person would not have to endure. It's certainly not something I'd want to go through again anytime soon. However the decision to have this surgery done was certainly a wise one after all as I just received the pathology results. Although there was no cancer there had been a high grade change in cells since February. Previous to that all the changes had been slow. So these results were a huge relief that the right decision had been made and waiting any longer would have at some point been really really bad. I think I'm pretty tough, but not sure I'm tough enough to have dealt with PD and cancer/chemo as well. Thankfully the right choice was indeed made although a tough one to make!
So now I start off 2015 with that out of the way, the fear of the big 'C' gone and I can focus on getting back to my exercise to help keep my PD in check. Now 4 weeks since surgery it's been hard on my body as it feels better and works better with regular movement. So I'm looking forward to getting back into the swing of things with various activities like running, walking, swimming, yoga and of course getting back in the saddle at riding lessons again in the coming weeks!
Surgery was routine of course for the Doctors. However I knew it would be far from routine for PD when it came to recovery. Although I wasn't even prepared for how tough it would be post op. My hubby and I arrived at the hospital, did all the necessary paperwork and pre surgery talks with anesthesiologist, my surgeon etc... We discussed my PD meds which thankfully they allowed me to take that morning and the fact that I would miss one dose during surgery. Then the time came for me to walk to the OR. I had a sudden flashback of my oldest daughter Samantha having her tonsils out just before she turned 5. I remember how terrified she was and how thankfully they let me take her to the OR. As I walked her into that scary sterile room full of gadgets she was shaking she was so terrified. I tried my best to console her as she sat on the OR table and I held her in my arms as she fell asleep to the gas mask on her face and tears streaming down her little cheeks. I managed to hold it together until she was out and they walked me out of the room at which time I bawled the ugly cry. It had been years since I had had surgery myself, but in that moment of laying on the OR table a terrible sense of fear of the unknown came over me. All I could think of was if I as an adult was this nervous and terrified imagine my poor little girl that day. The last thing I remember is thinking of that and feeling a tear roll down my own cheek as the nurse looked down at me and said "everything's going to be just fine I'll be right here with you the whole time." And with that, I was out.
I woke up in recovery being told how well everything went trying to understand it all in my very stoned state. And soon after that I was being wheeled down the hall to my room where I was to spend the night and leave the following morning for home. I was thrilled to see hubby again and was even more thrilled later that day when he brought the girls to see me. I tried my best to hide any pain I was in and bask in the excitement of Samantha showing me all the lovely homemade cards that her and the other children at the dayhome after school had made for me! I then spent the rest of the evening in and out of sleep and in and out of pain and fairly shaky from all the stress both mentally and on my body.
The nurse I had that night started to discuss with me at one of my BP checks about how they would try and get me up the following morning. I discussed my PD with her and explained that my biggest issue with it is not necessarily the tremor but the stiffness and rigidity that comes with it. How when I even sit in one position for too long my body seizes up and is hard to get moving again. I explained to her that their best chance for me to get up would be 45 mins after I took my morning Levodopa and that I would need two nurses to try and get me on my feet after nearly 24 hours in bed in one position. We agreed I would hold off until 7:30 am for my morning meds (shift change for them) and that would give them 45 mins to get their day going before getting me up. Sadly that didn't happen and it was nearly 1030 that morning before they came to get me out of bed for the first time. Now over 24 hours in a bed and my morning meds long worn off. When the nurse came in and said she was going to get me up I explained to her what I had the night before and how she was going to likely need another nurse to help. She told me that I'd be soar but I'd be fine. I tried to explain that I didn't mean from the surgery but from my PD and how seized up I was going to be. She felt she could get me up on her own, but I stressed that I thought that may be a mistake. She finally agreed and sent for another nurse. With pain I got to a sitting position with my feet over the side of the bed. Then with their assistance managed to get to my feet. I think the majority of my weight was on each of their arms and my right arm tremor was pretty insane. As soon as I got some weight to my legs my right leg started to vibrate. I thought to myself "oh dear, this is worse than I had even anticipated". They then urged me to take a step forward but my right leg was glued to the floor and I felt frozen for the first time since having Parkinson's. I had read about 'freezing' and heard other people talk of this as it's common with PD but I had never experienced it myself. They kept telling me to take a step and all I could say through my shaking right side was "I'm trying, my foot is stuck". Finally I was able to slide my foot forward. I don't think it came off the floor at all, rather just a shuffle forward with the other foot weighting any steps. I have no idea how long it took me to get from my bed to the other side of the room where the bathroom is but it certainly felt like an eternity. After three steps (or shuffles) the RN said to me "so that's what you meant?" I simply said "yes, but I didn't know how bad it would be". For the remainder of the day any of my times I need to get up and out of bed, two nurses came without being asked thankfully. Come 3 o'clock that afternoon I said "so I'm suppose to go home today right?" she smiled and said "ya that's not going to happen".
Thankfully by the time the following morning rolled around and from the multiple times of short stints of sitting up and getting to my feet I was able to walk with only one nurse. Then by about 1030 am the following day I managed to get up and walk although slowly unassisted. My nurse that morning called me an over achiever! Ha! Ha! I definitely threw them for a curve ball that's for sure. The night nurse the 2nd night came in at one point and asked me a whole bunch of questions about YOPD which I didn't mind at all. She told me that they dealt with babies and post partum and gynecology issues, not movement disorders. So she was curious to educate herself and I appreciated the effort and her compassion once she finally saw for herself what I had assumed would happen. When it finally came time that I was given the OK to go home and they thought I was moving well enough unassisted she told me that it had been a pleasure taking care of me. That she thought I was inspiring to talk to given how positive I was and all the things I do to try and keep my PD in check. That given my circumstances she admired my attitude. She was very sweet and in that moment of feeling crappy and being in a fair amount of pain I certainly did not feel in any way shape or form inspiring!
It was a slow road to recovering, PD definitely threw an added curve ball into things that an otherwise healthy person would not have to endure. It's certainly not something I'd want to go through again anytime soon. However the decision to have this surgery done was certainly a wise one after all as I just received the pathology results. Although there was no cancer there had been a high grade change in cells since February. Previous to that all the changes had been slow. So these results were a huge relief that the right decision had been made and waiting any longer would have at some point been really really bad. I think I'm pretty tough, but not sure I'm tough enough to have dealt with PD and cancer/chemo as well. Thankfully the right choice was indeed made although a tough one to make!
So now I start off 2015 with that out of the way, the fear of the big 'C' gone and I can focus on getting back to my exercise to help keep my PD in check. Now 4 weeks since surgery it's been hard on my body as it feels better and works better with regular movement. So I'm looking forward to getting back into the swing of things with various activities like running, walking, swimming, yoga and of course getting back in the saddle at riding lessons again in the coming weeks!
Dec 21, 2014
A year of reflection...farewell 2014, you will not be missed!
This has been quite a year to say the least. Actually it's been a long year and a half because the second half of 2013 was when the journey actually started. As we near closer to 2015 I am a different person than I was before, forever changed. A new way of thinking, a new way of doing, a new beginning has emerged for not just myself but my family.
It was a year of shocks, realizations and soul searching. I will never forget that day in April sitting in a Neurologists office alone 350 km's away from home when I first heard the words "I think you have Parkinson's Disease". Although I knew my body was failing me and something was wrong that had never been something on my radar and to this day I can still feel the sensation like I was kicked in the gut and winded. A vivid memory etched in my brain of me sitting in that room scared, shocked and yet oddly relieved that someone was finally figuring it out.
Then in May when I was back again this time with my very supportive husband in that same building with a movement disorder neurologist who wanted to start me on a treatment plan for the disease still saying "think" or "suspected". I remember leaving that appointment, prescriptions in hand torn up inside. Having so much trouble getting my body to cooperate, so much frustration with simple tasks that it often would bring me to tears not understanding why. Yet overwhelmed with a feeling that despite wanting those things to get better, not wanting the treatment to work. Before that day in April I knew nothing about YOPD now a month later I knew far too much. I knew that unlike MS and some other neurological conditions there was as of yet no treatments to slow progression. I knew that it was a degenerative disease that would always get worse. I knew a lot more about it than I wanted to and was torn with wanting my body to start cooperating again and not wanting it to so I would not have this disease...
Time went on, it was clear that I could not function in my life without my little yellow pills. I started to get joyous windows of opportunity where I could do tasks I couldn't before. An odd sense of gratitude mixed with fear would overcome me in the months to come. Trying to prepare myself for what was to happen on September 19th, 2014. The day where yet again I found myself in that same hospital 350 km's from home, alone but I thought mentally prepared for what was to come. A confirmed diagnosis of Young Onset Parkinson's Disease. I've spoke of before and always loved the song "Unanswered Prayers" by Garth Brooks. I believe it's true that some things we pray for aren't answered because they shouldn't be, because there's another plan that suits us better. I prayed hard for an answer to figure out what was wrong with me, I think there are moments where I would have wished that prayer wasn't answered. But it was. I then ended off my year with a pre Christmas hysterectomy and removal of my tubes which PD threw a big curve ball into the post op scenario. I'll write about that another time.
You know it's been a year of struggle with health issues when you visit your family physician in December and he says "you poor soul, 2014 just isn't your year is it?" Thankfully 2015 is just around the corner though and I know it's going to be a great year despite any struggles that I may face! There were many tears shed this year through all of this discovery, many moments of kicking and screaming and anger, many moments of feeling more alone than I ever have in my entire life. Thankfully however there were many joyous moments and lessons learned to balance things out a bit.
I found support... in the most unlikeliest of places. Writing this blog for nobody's purpose other than my own grew into something else. It connected me to people all over the world who are going through and feel the same type of frustrations and emotions that I do. Given me an opportunity to learn from and share with those people. For those of you who read this who have PD I will include some links at the bottom of this post that you might find helpful. I have found support in friends from days gone by that have now re-entered my life in the most amazing and beautiful way. Friends that love and support me more than I could have ever dreamed up that lift me up on the days where I want to cry. I would not have those people in my life the way they are now if it weren't for PD and I am grateful for that. I have attended support group meetings where admittedly it can sometimes feel like that song from Sesame Street is playing in the background "one of these things is not like the others" as most of them have 25, 35, 45+ years on me. However despite my anxiety about attending them were very positive experience with useful information,
I have found hope... There are amazing things happening through organizations like the Michael J Fox Foundation and others on the road to new treatments, better treatments and hopefully a cure someday. Pumps that can be attached similar to diabetes pumps to deliver more effective doses of levodopa and increase "on" times etc. Inhalers to attempt to get it to your brain faster. As well as important steps to finding something to slow progression of the disease. I have found some things through my Naturopathic Doctor to help me in some of these areas and I have hope that there are more ways by thinking outside the traditional 'pharma box'.
I have found a new vision... I love helping people its my passion and I truly strive to use my abilities to teach my girls to give back. That there are always others less fortunate and we should help people out when we can and be kind. I've raised money for various causes, shaved my head for childhood cancer, planned benefits for families struggling etc... These things all warm my heart and make it smile and I truly love doing them. But I think my path of helping is changing and will look a bit different moving forward. Through this blog I have connected with others facing this disease and have had the opportunity to share and spread awareness that Parkinson's is not just an old person's disease. It may look a lot different when you have it younger, in fact when my medication is working and I'm having a good day most people would never even know I had it. It's hard to "see" sometimes and unless you spend a lot of time with me or see me on an "off" period you couldn't really understand. I was approached by the Parkinson's society of Canada about my riding lesson's for therapy and they posted an article in their National epost. I was thrilled to spread the word about the benefits of riding which has helped me tremendously and I hope that it has caught the attention of others with PD to give it a try. The link to that publication can be found here: http://parkinsonpost.com/
I was also overwhelmed when an organization that's at the forefront of finding a cure wanted to use a portion of my blog to spread awareness on YOPD. The Michael J Fox Foundation does amazing work and the response from their article and people it's connected me with has been invaluable. Oh what I would do to get to sit down and have a coffee with Michael. His books, his attitude, his determination are all very inspirational. https://www.michaeljfox.org/foundation/news-detail.php?realizations-ve-had-since-my-young-onset-parkinson-disease-diagnosis
I may not have gotten to choose whether or not I have PD, and to be honest who in the world would. However I can choose to try and make something positive come from it. To try and help others struggling now and in the future. To do my best to advocate for what is life changing and a lifelong trial. It helps keep my positivity in check so I get as much from it as others may receive. The messages I've received from all over have been inspirational to me and I am grateful for those that reach out to share their similar stories.
And I found love... Unconditional amazing love particularly from my husband. Who throughout this has been there to comfort me, tell me it'll be ok and that he chose me in sickness and in health. I'm sure he has his own moments of fear, but he always makes me feel loved and comforted. That he will always be by my side. He's also terrible to torment me and make me laugh when my tremor is bad or I'm hunched over before my yellow friends kick in. Playful digs about a bad situation to make me laugh. Cause you might as well laugh as cry right? The song 'You & Me' sums it up perfectly. I first heard it on Ellen and it was like they were singing it about us! http://ellentube.com/videos/0-lgywpm4e/ And I found love from my children and worry from them that both makes me feel awful but loved at the same time. Love from family and friends who come to my rescue when needed. There is a lot of love and I am full of joy for it.
All and all it has been a year that I'll happily see go away. However the struggles will not depart as the bells ring this New years, but that's ok. It'll regardless be a fresh start and I pray a positive outlook moving forward. I will strive to stay positive, to keep as active as I can like I have been to keep the disease at bay. I will continue to find the joy among the fear. I will continue to try and help others and to spread awareness. I will keep, keeping on because I want to and despite the struggles I am blessed I am lucky and I have Joy in this Journey...
Here are some links for those of you with PD that might interest you:
I had the pleasure of connecting with this lady through emails She's wonderful check out her blog! http://magictrickparkinsons.wordpress.com/
Sonia is a family physician that had to give up her practice with YOPD. Life works in mysterious ways and oddly enough my family doctor and her are friends. She puts out some great information and is very sweet. http://www.designingacure.com/
Another I've had the pleasure of connecting with http://www.parkinsonspositive.com/
And this man is the chair of the YOPD support group in the Maritimes. We had a great chat, he's full of great information and remains positive in his own journey. www.peterdavison.ca/ParkinsonsVideos.html
It was a year of shocks, realizations and soul searching. I will never forget that day in April sitting in a Neurologists office alone 350 km's away from home when I first heard the words "I think you have Parkinson's Disease". Although I knew my body was failing me and something was wrong that had never been something on my radar and to this day I can still feel the sensation like I was kicked in the gut and winded. A vivid memory etched in my brain of me sitting in that room scared, shocked and yet oddly relieved that someone was finally figuring it out.
Then in May when I was back again this time with my very supportive husband in that same building with a movement disorder neurologist who wanted to start me on a treatment plan for the disease still saying "think" or "suspected". I remember leaving that appointment, prescriptions in hand torn up inside. Having so much trouble getting my body to cooperate, so much frustration with simple tasks that it often would bring me to tears not understanding why. Yet overwhelmed with a feeling that despite wanting those things to get better, not wanting the treatment to work. Before that day in April I knew nothing about YOPD now a month later I knew far too much. I knew that unlike MS and some other neurological conditions there was as of yet no treatments to slow progression. I knew that it was a degenerative disease that would always get worse. I knew a lot more about it than I wanted to and was torn with wanting my body to start cooperating again and not wanting it to so I would not have this disease...
Time went on, it was clear that I could not function in my life without my little yellow pills. I started to get joyous windows of opportunity where I could do tasks I couldn't before. An odd sense of gratitude mixed with fear would overcome me in the months to come. Trying to prepare myself for what was to happen on September 19th, 2014. The day where yet again I found myself in that same hospital 350 km's from home, alone but I thought mentally prepared for what was to come. A confirmed diagnosis of Young Onset Parkinson's Disease. I've spoke of before and always loved the song "Unanswered Prayers" by Garth Brooks. I believe it's true that some things we pray for aren't answered because they shouldn't be, because there's another plan that suits us better. I prayed hard for an answer to figure out what was wrong with me, I think there are moments where I would have wished that prayer wasn't answered. But it was. I then ended off my year with a pre Christmas hysterectomy and removal of my tubes which PD threw a big curve ball into the post op scenario. I'll write about that another time.
You know it's been a year of struggle with health issues when you visit your family physician in December and he says "you poor soul, 2014 just isn't your year is it?" Thankfully 2015 is just around the corner though and I know it's going to be a great year despite any struggles that I may face! There were many tears shed this year through all of this discovery, many moments of kicking and screaming and anger, many moments of feeling more alone than I ever have in my entire life. Thankfully however there were many joyous moments and lessons learned to balance things out a bit.
I found support... in the most unlikeliest of places. Writing this blog for nobody's purpose other than my own grew into something else. It connected me to people all over the world who are going through and feel the same type of frustrations and emotions that I do. Given me an opportunity to learn from and share with those people. For those of you who read this who have PD I will include some links at the bottom of this post that you might find helpful. I have found support in friends from days gone by that have now re-entered my life in the most amazing and beautiful way. Friends that love and support me more than I could have ever dreamed up that lift me up on the days where I want to cry. I would not have those people in my life the way they are now if it weren't for PD and I am grateful for that. I have attended support group meetings where admittedly it can sometimes feel like that song from Sesame Street is playing in the background "one of these things is not like the others" as most of them have 25, 35, 45+ years on me. However despite my anxiety about attending them were very positive experience with useful information,
I have found hope... There are amazing things happening through organizations like the Michael J Fox Foundation and others on the road to new treatments, better treatments and hopefully a cure someday. Pumps that can be attached similar to diabetes pumps to deliver more effective doses of levodopa and increase "on" times etc. Inhalers to attempt to get it to your brain faster. As well as important steps to finding something to slow progression of the disease. I have found some things through my Naturopathic Doctor to help me in some of these areas and I have hope that there are more ways by thinking outside the traditional 'pharma box'.
I have found a new vision... I love helping people its my passion and I truly strive to use my abilities to teach my girls to give back. That there are always others less fortunate and we should help people out when we can and be kind. I've raised money for various causes, shaved my head for childhood cancer, planned benefits for families struggling etc... These things all warm my heart and make it smile and I truly love doing them. But I think my path of helping is changing and will look a bit different moving forward. Through this blog I have connected with others facing this disease and have had the opportunity to share and spread awareness that Parkinson's is not just an old person's disease. It may look a lot different when you have it younger, in fact when my medication is working and I'm having a good day most people would never even know I had it. It's hard to "see" sometimes and unless you spend a lot of time with me or see me on an "off" period you couldn't really understand. I was approached by the Parkinson's society of Canada about my riding lesson's for therapy and they posted an article in their National epost. I was thrilled to spread the word about the benefits of riding which has helped me tremendously and I hope that it has caught the attention of others with PD to give it a try. The link to that publication can be found here: http://parkinsonpost.com/
I was also overwhelmed when an organization that's at the forefront of finding a cure wanted to use a portion of my blog to spread awareness on YOPD. The Michael J Fox Foundation does amazing work and the response from their article and people it's connected me with has been invaluable. Oh what I would do to get to sit down and have a coffee with Michael. His books, his attitude, his determination are all very inspirational. https://www.michaeljfox.org/foundation/news-detail.php?realizations-ve-had-since-my-young-onset-parkinson-disease-diagnosis
I may not have gotten to choose whether or not I have PD, and to be honest who in the world would. However I can choose to try and make something positive come from it. To try and help others struggling now and in the future. To do my best to advocate for what is life changing and a lifelong trial. It helps keep my positivity in check so I get as much from it as others may receive. The messages I've received from all over have been inspirational to me and I am grateful for those that reach out to share their similar stories.
And I found love... Unconditional amazing love particularly from my husband. Who throughout this has been there to comfort me, tell me it'll be ok and that he chose me in sickness and in health. I'm sure he has his own moments of fear, but he always makes me feel loved and comforted. That he will always be by my side. He's also terrible to torment me and make me laugh when my tremor is bad or I'm hunched over before my yellow friends kick in. Playful digs about a bad situation to make me laugh. Cause you might as well laugh as cry right? The song 'You & Me' sums it up perfectly. I first heard it on Ellen and it was like they were singing it about us! http://ellentube.com/videos/0-lgywpm4e/ And I found love from my children and worry from them that both makes me feel awful but loved at the same time. Love from family and friends who come to my rescue when needed. There is a lot of love and I am full of joy for it.
All and all it has been a year that I'll happily see go away. However the struggles will not depart as the bells ring this New years, but that's ok. It'll regardless be a fresh start and I pray a positive outlook moving forward. I will strive to stay positive, to keep as active as I can like I have been to keep the disease at bay. I will continue to find the joy among the fear. I will continue to try and help others and to spread awareness. I will keep, keeping on because I want to and despite the struggles I am blessed I am lucky and I have Joy in this Journey...
Here are some links for those of you with PD that might interest you:
I had the pleasure of connecting with this lady through emails She's wonderful check out her blog! http://magictrickparkinsons.wordpress.com/
Sonia is a family physician that had to give up her practice with YOPD. Life works in mysterious ways and oddly enough my family doctor and her are friends. She puts out some great information and is very sweet. http://www.designingacure.com/
Another I've had the pleasure of connecting with http://www.parkinsonspositive.com/
And this man is the chair of the YOPD support group in the Maritimes. We had a great chat, he's full of great information and remains positive in his own journey. www.peterdavison.ca/ParkinsonsVideos.html
Nov 13, 2014
"Life is like riding a bicycle, to keep your balance you must keep moving" ~ Albert Einstein
We all struggle to find the right balance in our lives. Most people my age associate that phrase with a work/life/kids kind of balance. I know that would have been my initial thought before. Now I find myself looking for the right 'balance' in many areas as it relates to Parkinson's.
For myself there's a balance between traditional and perhaps not such conventional therapies. For instance my horse back riding lessons. It's now been six months since I started taking lessons and I have to say it has had a tremendous impact on both my physical & emotional health. Unlike traditional therapies that I also utilize like Physio & Occupational Therapy, Massage and Acupunture riding is for my benefit now and moving forward, preventative therapy. Where as the other therapies typically serve an immediate need for relief. A need to improve the function in my right hand, or ease the pain that comes in my shoulders & neck which can often be debilitating. Those treatments are necessary for multiple reasons however riding is different. It is helping maintain my balance & leg strength, essential if I'm going to keep wearing those heels! It works on my posture which is important because with PD one tends to stoop. The more lessons I take the more I see improvement in my ability to ride, but more importantly the more strength I maintain in muscle groups that don't get worked with other forms of exercise like running or walking. After these six months I've been able to train my legs to do what it required of them, to keep those muscles strong and although there are still bad days where my abilities are limited when riding it is still an enjoyable experience for me, that's the mental health side. It's fun even on the frustrating days. My last two lessons I've started to attempt to canter. This is an extremely fun step and concept, although it most definitely requires my body to cooperate in different ways than trotting does. My mind knows what my body needs to do, but my body just isn't quite there. I have much work to do on keeping my legs in place, not leaning forward and keeping my posture tall & centered and in the saddle and not on the ground! All of those things can be a struggle for this body of mine. It can be a bit of an intimidating thing when your body doesn't necessarily want to cooperate the way your mind wants it to. However, regardless of that the excitement of moving onto that next step of riding gives me the push to want to keep working at it. I get so much joy out of my weekly ride even on the bad days that I hope I never have to give it up. I may even be liking riding boots as much as my high heels! Ha! Ha!
Then there is the balance between pharmaceuticals and the more natural way. I am not opposed as said before to the pharma way, in fact I cannot imagine my life without Levodopa since being on it these past 5 months. I certainly wish my 'on' periods would last longer, but none the less I would not want to go back to the way I was before. Better to have some 'on' times albeit brief than none at all. So I am grateful for this treatment and for the great movement disorder neurologist & his nurse that handle my care. They are always there for me to ask questions even in between appointments by email and I am very fortunate for that. That being said there are so many other issues that go along with PD such as insomnia & pain and I'm just not willing to take yet another drug for every other ailment. So I really do try and do my research and find alternative treatments to the pharma world for these things. Besides I have tried some of the pharma routes for those things and they do not work. I had been told that by my neurologist that if it's PD pain, or PD related insomnia that muscle relaxers, sleeping pills and other such treatments typically don't work. So in addition to my own research I have a fabulous Naturopathic Doctor (Nara Simmonds). She works with me to focus on the most important issues I need help with and together we attempt to find things either diet related or supplement related that can help. Sometimes they do not work, other times they do. After some failed attempts at natural options such as melatonin for sleep I have been taking Valerian Complex for over 5 weeks now and I am thrilled to say that I have gotten more sleep in the last month than I have in the last two years combined! It's a very exciting thing to wake up knowing you got 5-7 hours sleep when you were essentially living on between 5-10 hours total a week before, if you were lucky. Sadly the health coverage world does not cover these things, which sucks because they can be expensive especially when you have a daily cocktail of that, B complex, Magnesium, Vitamin D, C and so on. The monthly tab can certainly add up. And there have been many suggested items that I've had to decline taking simply for financial reasons. However it is one heck of a joyful thing to have finally found something to help me get some much needed sleep! I had another appointment with her today and she's never one to give up, she had an entire list of plan C, D and so on incase this past one didn't work and I swear she was just as elated as I was when I told her I've been sleeping! She armed me with a list of some other things that can help increase dopamine production and 'on' periods as well as some other things to prevent neuron death (death of the cells that produce dopamine) and has researched it all to make sure it's all safe to take with my Levodopa. Of course I won't be able to afford to take everything on the list, but I'm looking forward to trying her top pick on the list next.
So for myself, there is much to balance. Natural and pharma, conventional and non traditional therapies and treatments. There's also the balance of attitudes. Just like anyone else I have my days, it would be unrealistic not to. Although I refuse to let PD define me, it has changed my life forever. With it still comes fear of what is to come, but also comes determination. I am determined to find the balance in therapies and treatments to maintain my current quality of life for as long as possible. To continue to explore forms of exercise that work for my body's limitations but still pushes them. To do everything I possibly can to try and slow progression. There is much that is out of my control and those are the things that cause fear and sadness and a sense of loss. All emotions that come to me in waves. However my attitude on how to accept it is up to me. Yes I have the poor me days, who doesn't? However when I find myself in that slump for more than a day or two I really try to kick my own self in the ass and give my head a shake. I am also fortunate enough to have a handful of people who care about me enough to lift me up on those days and I am very grateful for them. Having a fighting attitude is what will continue to drive me to exploring these new treatments and therapies and find the ones that work for me. PD looks differently for everyone who has it, particularly young onset patients. Therefore there is no blanket way to deal with it suitable for everyone. But I think if you want to fight it, if you want to maintain the best quality of life you can for as long as possible you need to step outside of the box and look at the giant picture of options. This is why my 'care team' consists of many professionals who are experts in various fields, they all play a role in helping me fight!
For myself there's a balance between traditional and perhaps not such conventional therapies. For instance my horse back riding lessons. It's now been six months since I started taking lessons and I have to say it has had a tremendous impact on both my physical & emotional health. Unlike traditional therapies that I also utilize like Physio & Occupational Therapy, Massage and Acupunture riding is for my benefit now and moving forward, preventative therapy. Where as the other therapies typically serve an immediate need for relief. A need to improve the function in my right hand, or ease the pain that comes in my shoulders & neck which can often be debilitating. Those treatments are necessary for multiple reasons however riding is different. It is helping maintain my balance & leg strength, essential if I'm going to keep wearing those heels! It works on my posture which is important because with PD one tends to stoop. The more lessons I take the more I see improvement in my ability to ride, but more importantly the more strength I maintain in muscle groups that don't get worked with other forms of exercise like running or walking. After these six months I've been able to train my legs to do what it required of them, to keep those muscles strong and although there are still bad days where my abilities are limited when riding it is still an enjoyable experience for me, that's the mental health side. It's fun even on the frustrating days. My last two lessons I've started to attempt to canter. This is an extremely fun step and concept, although it most definitely requires my body to cooperate in different ways than trotting does. My mind knows what my body needs to do, but my body just isn't quite there. I have much work to do on keeping my legs in place, not leaning forward and keeping my posture tall & centered and in the saddle and not on the ground! All of those things can be a struggle for this body of mine. It can be a bit of an intimidating thing when your body doesn't necessarily want to cooperate the way your mind wants it to. However, regardless of that the excitement of moving onto that next step of riding gives me the push to want to keep working at it. I get so much joy out of my weekly ride even on the bad days that I hope I never have to give it up. I may even be liking riding boots as much as my high heels! Ha! Ha!
Then there is the balance between pharmaceuticals and the more natural way. I am not opposed as said before to the pharma way, in fact I cannot imagine my life without Levodopa since being on it these past 5 months. I certainly wish my 'on' periods would last longer, but none the less I would not want to go back to the way I was before. Better to have some 'on' times albeit brief than none at all. So I am grateful for this treatment and for the great movement disorder neurologist & his nurse that handle my care. They are always there for me to ask questions even in between appointments by email and I am very fortunate for that. That being said there are so many other issues that go along with PD such as insomnia & pain and I'm just not willing to take yet another drug for every other ailment. So I really do try and do my research and find alternative treatments to the pharma world for these things. Besides I have tried some of the pharma routes for those things and they do not work. I had been told that by my neurologist that if it's PD pain, or PD related insomnia that muscle relaxers, sleeping pills and other such treatments typically don't work. So in addition to my own research I have a fabulous Naturopathic Doctor (Nara Simmonds). She works with me to focus on the most important issues I need help with and together we attempt to find things either diet related or supplement related that can help. Sometimes they do not work, other times they do. After some failed attempts at natural options such as melatonin for sleep I have been taking Valerian Complex for over 5 weeks now and I am thrilled to say that I have gotten more sleep in the last month than I have in the last two years combined! It's a very exciting thing to wake up knowing you got 5-7 hours sleep when you were essentially living on between 5-10 hours total a week before, if you were lucky. Sadly the health coverage world does not cover these things, which sucks because they can be expensive especially when you have a daily cocktail of that, B complex, Magnesium, Vitamin D, C and so on. The monthly tab can certainly add up. And there have been many suggested items that I've had to decline taking simply for financial reasons. However it is one heck of a joyful thing to have finally found something to help me get some much needed sleep! I had another appointment with her today and she's never one to give up, she had an entire list of plan C, D and so on incase this past one didn't work and I swear she was just as elated as I was when I told her I've been sleeping! She armed me with a list of some other things that can help increase dopamine production and 'on' periods as well as some other things to prevent neuron death (death of the cells that produce dopamine) and has researched it all to make sure it's all safe to take with my Levodopa. Of course I won't be able to afford to take everything on the list, but I'm looking forward to trying her top pick on the list next.
So for myself, there is much to balance. Natural and pharma, conventional and non traditional therapies and treatments. There's also the balance of attitudes. Just like anyone else I have my days, it would be unrealistic not to. Although I refuse to let PD define me, it has changed my life forever. With it still comes fear of what is to come, but also comes determination. I am determined to find the balance in therapies and treatments to maintain my current quality of life for as long as possible. To continue to explore forms of exercise that work for my body's limitations but still pushes them. To do everything I possibly can to try and slow progression. There is much that is out of my control and those are the things that cause fear and sadness and a sense of loss. All emotions that come to me in waves. However my attitude on how to accept it is up to me. Yes I have the poor me days, who doesn't? However when I find myself in that slump for more than a day or two I really try to kick my own self in the ass and give my head a shake. I am also fortunate enough to have a handful of people who care about me enough to lift me up on those days and I am very grateful for them. Having a fighting attitude is what will continue to drive me to exploring these new treatments and therapies and find the ones that work for me. PD looks differently for everyone who has it, particularly young onset patients. Therefore there is no blanket way to deal with it suitable for everyone. But I think if you want to fight it, if you want to maintain the best quality of life you can for as long as possible you need to step outside of the box and look at the giant picture of options. This is why my 'care team' consists of many professionals who are experts in various fields, they all play a role in helping me fight!
I fight not only for myself, but for my beautiful girls...for my little family of four!
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