What you do/happens after being diagnosed with Parkinsons

I guarantee you that not one of us in the world who have been diagnosed with any disease ever thought it would happen to us.  Whether you live a healthy lifestyle or otherwise nobody sits around thinking "someday I'm going to have Parkinsons".  For those of us who have heard those dreaded words from a movement disorder neurologist I am sure you will agree that it was a life changing moment.  Or as I once heard at a conference a catalytic moment in your life.  Regardless of how you dealt with or continue to deal with your diagnosis, positive all the way, lock yourself in a room and feel sorry for yourself or a combination of both; there are things that will most likely happen to you, or you will do after your life changing, catalytic moment occurs. 

1.  You will throw a pitty party
It may be right after your diagnosis when you're in shock and scared about your future because you just don't know enough about the disease yet.  It may be long after when you hit a point where you know you've progressed in the disease.  Or it may just be a random party that happens here & there because your symptoms get the best of you.  The reality of it is, even the most positive person is bound to have days where they feel sorry for themselves or are frustrated that this particular day is just way harder than the already hard days.  Even the happiest of attitudes are going to have a moment where it's just hard to find the silver lining or see the glass as half full.  And you know what?  That's ok!  The key is to not let it drag you down day in and day out, have your pitty party.  Kick, scream, throw a fit just don't let it last for more than a couple days.

2.  You will try and hide it
Even if you are an open book like myself and the world knows you have PD and you're ok that they do, you will hide at some point.  You'll try and 'hide your symptoms'.  If everyone knows you have it this seems ridiculous; but even if you're "out of the Parkie closet" you're bound to have a time where you're either just sick of your symptoms or embarrassed of them.  Or worse yet, trying to save someone else from feeling uncomfortable.  You may put your tremoring hand in your pocket so nobody sees it, you may choose to stand rather than sit so they don't notice you're fidgeting as much.  Or perhaps you are the 'Parkie in the closet' and you're trying to hide the entire diagnosis from your family, boss etc...   Regardless each and everyone one of us will have a moment where to some degree you try and hide it.

3.  You will lose
The sad reality of life is that any major catastrophe or big change in our lives tend to show us who is genuinely there for us.  It could be divorce, moving away, having kids or having a diagnosis of a disease like Parkinsons.  No matter what it's for certain that you will lose somebody you love (or at the least have your relationship change in a way you don't want it to) and it's hard and it sucks.  After all when we are going through something as devastating as being diagnosed with PD that's the time in life you need your friends and family the most.  Sometimes you need to be patient because your diagnosis scares them and they don't know how to react, however that doesn't make it right or easier.  Sometimes the hard truth is that they just weren't as in love with you and your friendship/relationship as you were them.  But when you would run out in front of a bus to save your bestie, friend, spouse or family member and they run away like they are being chased by a lion when you get diagnosed it's a hard pill to swallow.  You will most likely mourn the loss like a death and it will be hard.  You will also most likely hope that someday they come back to you and perhaps they will, but you need to be ok with it if they don't.

4.  You will gain
On the flip side of #3 you will be shocked at the friends, love & support that you gain and are blessed with after your diagnosis.  There will be people you never expected to be there for you who suddenly are!  People who will show you in more ways than one that you matter to them and they are there for you on your journey, good bad or otherwise.  Not because they feel obligated but because they want to support you.  It will warm your heart in ways you never expected, hold onto those people because they are authentic and will make your good days amazing and your bad days great just because they are there for you!

5.  You will hurt
Not to be a Debbie Downer in this post, but refer to #1 I guess!  However it's true, you will most likely hurt physically from stiffness or PD in general.  Most people with PD experience pain in one way or another, but the hurt that you don't expect is the emotional hurt.  Many people with PD have depression or anxiety as a symptom of the disease.  Yes of course having the disease in itself can be reason enough to be depressed, but the reality is these mood changes and emotional hurts are a part of the disease itself.  And when you were always a positive person who didn't possess any of these traits it can be difficult to understand how to cope with them.  But know that it's normal and you will be ok and do not be afraid to talk to your neurologist about it.

6.  You will read too much or nothing at all
You'll become one of two types, the researcher who thinks knowledge is power.  Who will read every book there is about PD, read every article out there, every piece of information you can get your eyes on in an effort to stay informed and keep yourself as healthy as possible.  OR, you will not want to know another thing about it and keep living your life as is, figuring it out for yourself along the way.

7.  You will be blessed
I'm a true believer that everything happens for a reason, even the bad stuff.  After all if not why would bad things happen to good people?  Although having Parkinsons wasn't part of the plan and it's certainly not something you would have chosen there are gifts to be had from it.  The PD community is amazing, welcoming and full of care & support for each other.  Reach out to them and you'll see it was worth attending a support group meeting, or connecting online with other people who have it.  They can give you advice, suggestions and simply be there for you knowing what you're going through.  We all have a purpose in life and if the PD card was dealt to you (or any other bad card for that matter) look for the gifts that will come because of it.  Somedays it may be tough to find them but I assure you they are there if you're open to finding the blessings.


Although some of these things seem negative there's a positive in them all if you look hard enough.  The reality is that in the bad things you will find what's really important to you in your life.  Your perspective will change for the better because the little things so many of us fret or stress about just won't matter anymore.  We will focus on what's important moving forward and that could be a variety of things big or small.  You may have exercised in the past because you wanted to be a certain size or weight where as now that no longer matters to you and you are free of the numbers on a scale.  Because you now exercise to keep your body working properly!  You may have been the social butterfly that attended every event/party there was because you wanted to be surrounded by a ton of friends always.  Where as now you prefer to keep your circle tight with genuine people that care about you and you love to be around, this is likely much more fulfilling!  So my point being rather than focusing on what you lost or the negative "thing" you'll do or will happen to you look at it in more depth and see how the flip side of it can mean a blessing in disguise and a more enjoyable life experience.

 The most important thing you "should" do after your diagnosis is find the Joy in your Journey,

it's there... I promise...

Don't sweat the small stuff... Well perhaps you could turn down the heat then???

It's funny how in life we often get worked up and stressed over the little things, when if we look at the big picture they really aren't things we should fret about.  There might be much bigger fish to fry in our lives and real things to worry about but we naturally get anxious, bummed out and sweating over the 'small stuff'. 

For me, this is no different in life or with living with Parkinsons Disease.  The reality is your logical mind is well aware of the fact that you have a progressive neurological disease.  Parkies are well aware of the limitations we have with our bodies because of the movement disorder.  We are reminded daily of those struggles during our "off" periods when our meds aren't working so great and take comfort in the hours of the day we are "on".  Because every Parkie is different we may all struggle with different variations of the disease being the worst parts, but we all can understand that the struggles can be tough.  As mentioned many times before my main issues are stiffness which gets so severe when meds are not working that it's painful.  Stooped posture, struggles with fine motor skills also top the list.  Some Parkie's main issue are the tremors which make it difficult to perform simple tasks like pouring some tea.  Thankfully my tremors are well controlled and usually almost non existent, but when they are present they are frustrating to say the least.

Now all that being said I believe I accept the fact that despite my young age and waking up feeling 90 years old everyday overall I'm quite positive about my situation and life.  I try and focus on the blessings I have and stay focused on what I need to do to keep my body working well.  I most definitely have my moments of frustration and even anger but I look for the joy despite it.  I hate taking pills and still do the 'eye roll' everytime my medication alarms go off on my phone but at the same time I am grateful to have those pills because without them I am unable to move with ease and am in agony in various ways.  So overall I am content with my life, take it in stride and remain optimistic for a long enjoyable life.  So why is it if the overall picture of having Parkinsons and the issues it causes for movement and the fear of the unknown as time goes on can be accepted; is it that the little things that go with the disease are the ones that knock you down and have you feeling depressed?

I find myself as time goes on upset and down about the small stuff.  For instance the non motor symptoms of the disease like loss of sense of smell.  This is often one of the first signs of the disease and one that I noticed years ago.  Overall, sometimes not being able to smell might be a good thing, right?  Especially if the entire family had beans for supper the night before!  Ha!  However as time goes on and the sense is diminishing more and more I now notice I'm losing my taste as well.  Oddly enough a fellow Parkie & I were just talking about this earlier in the week and he told me he no longer has a sense of smell or taste for anything.  This made me sad for him, because I love food and the thought of not being able to taste it sounds horrible.  But the reality of it is I've started to experience this already but have been ignoring it.  I have been unable to cook spicy foods for anyone other than myself as I'm not a recipe user and it's often too hot for anyone else to eat.  But to me I can't tell that it's as spicy as another says it is.  The kicker on this one was when I made chilli the other night for myself.  I had some, it was delicious (or so I thought).  My lips were burning so I knew it was spicy but I had no sensation of it being hot at all as I consumed it.  Several hours later when I was literally rolling around on my deck in -15 degree temperatures in the snow, sweating profusely and in so much pain I was actually considering calling an ambulance I realized.... I can't taste.... it was the chilli.... I AM losing my sense of taste in addition to my sense of smell.... I love cooking, I love experimenting in the kitchen, I love flavours and spices, I love food... I love how it tastes...   I do not want Parkinsons to take that away from me......

So, what happens when I hit a moment like that?  Well oddly enough in the grand scheme of things and all the issues that come with PD losing smell and taste are really small stuff and not worth sweating over.  However, my mind turns elsewhere and the pitty party starts.  I start to think about how unfair Parkinsons is.  That as if it's not bad enough to have the disease and the motor issues that go with it and the realization that those things ARE going to get worse, why is it I also need to have all the other things as well?  Why do I have to be the one with PD who also gets Dystonia (another movement disorder you can get on it's own or from having PD) in my hands and feet & legs?  Why do I also have to have a bladder condition that I need monthly treatments for?  Why do I have to have my speech changed and softened so that I have to focus when speaking to people to make sure I'm loud enough for them to hear?  Why do I have to have insomnia so severe that sometimes I feel like a walking zombie?  Why are my beloved high heels getting lower when I'm in love with them & was meant to be 5'9" not 5'4"?  Why do I have to have anxiety & social awkwardness when I used to be a social butterfly?  It's not fair that PD gets to change my personality too.... Why do I have to lose my sense of smell and possibly my sense of taste too?  Why?  Why?  Why?  Isn't the motor issues of Parkinsons bad enough????

Yup, that's where my mind travels in those "small stuff" moments.  That's the way I "sweat" and frankly it's a bit stupid because there are much worse things about this disease that I should be sweating about.  But yet overall I remain positive about it all, until these small moments hit and I get angry and frustrated and sad.  I rarely write a Debbie Downer type of post and that's not the intention here because I do continue to find the joy and I will continue to have my positive attitude and use my slogan "Screw You Parkinsons" cause you picked the wrong chick to mess with.  I still will fight and will focus on living well with PD, however I think it's also important to be real about the things that can be depressing, to acknowledge the fact that even the positive person can have moments like this.  I have no doubt that many of my fellow Parkies that read this blog have had experiences just like these moments.  Times where you have been sweating the small stuff and that is why I write this, because we are not alone in these feelings.  Sometimes we cannot turn the heat down, it's out of our control.  So lets just resign to the fact that we are allowed to be pissed off once in a while, provided we don't let it consume us.  Let's get our sweat on, get angry, throw a hissy fit and then dust ourselves off and move on.  Then perhaps hop on the treadmill and get our sweat on in a positive way that will make our bodies work better!

Sometimes we just need a good hissy fit to get the hell over it and move on to positivity again!  I'm happy to say mine lasted about 24 hours but now I'm over it... Screw You Parkinsons!

A Parkie's year in review... Goodbye 2015!

As 2015 comes to a close it marks my first full year living "officially" with Young Onset Parkinsons.  Of course I had PD all of last year and the year before and lord knows how many years prior to that.  However it was April of 2014 before I was told that I likely had PD, 6 months trial on Levodopa & an official diagnosis on September 19th, 2014.  However this marks the first full year without wondering why my body wasn't working properly.  The first full year being treated for the disease.  The first full year of my new Parkie life. 

As last year came to a close I was happy to see it go, it was a year of trials, many unknowns and a lot of fear, yet relief in knowing what was wrong.  This year seems to have been a bit less of a roller coaster ride but it certainly still had it's frustrations.  As 2015 started I was ready... I knew what I had, I had read thousands of articles and pieces of information to arm me with the knowledge needed to live well with PD and to do my part in slowing progression.  I started the year in full force of my "Screw you Parkinsons" attitude and was on the war path to show it who's boss!

Did I accomplish this task?  I'd say to some extent yes.  I like to think I still have my warrior attitude about life with PD and am still stubborn and determined to keep it in check, still focused on thinking outside the box for therapies and treatment and still holding my own.  There's one thing however with my new found fighting attitude that I wasn't expecting and didn't plan for.  To get worse...  Foolish I know I have a progressive, degenerative neurological disease, of course I'm going to get worse.  But not in a year, not me, no way that's going to take many years to happen.  Well, that bubble was officially busted.  By the time April hit which would mark the one year anniversary of being told I likely had PD I had such pain in my hands (right in particular) that I was told by my movement disorder neurologist I had developed Dystonia in my hands. Another movement disorder you can get on it's own or as a symptom of PD.  I was advised that with that and my levodopa not lasting a full 4/5 hours for stiffness relief and fine motor skills that perhaps I needed to add another medication.  Another med?  I don't think so, after all I'm busy kicking some Parkinsons ass remember?  I drove the 350k trek home full of frustration and then commenced Spring Pitty Party 2015.  Total refusal to listen to my doctor and add the new med, total determination that he was wrong, total all consumed feeling sorry for myself time....  I finally snapped out of it and registered for bootcamp and started going for regular Chinese style acupuncture because no way was I taking more meds.  It had only been a year on them and there was no way in hell I was worse in a way I couldn't fix.

So with guns a blazin' I kicked it into high gear, working out like crazy running to treatments of various sorts and I was back to my 'Screw you Parkinsons' mindset.  I focused on what I needed to, moved into summer enjoying time with my girls at the beach and having family fun throughout the summer and remained in denial.  As fall started to peak it's head around the corner I was noticing my levodopa was wearing off now in 2-3 hours as opposed to 4, I was in agony with stiffness & subsequently pain from it an average of 2.5 hour intervals as I waited for the time to take my next dose to hit and it to kick in.  My feet, oh my feet were hurting so bad.  Somedays so painful I would be limping.  With a little help from Dr. Google & my own refusal to believe PD had anything to do with it I quickly diagnosed my issue as planters fasciitis.  Went for some physio, extra acupuncture and was prepared to deal with that.  Until my next Neuro appointment came up the end of October.  Where my bubble was burst yet again.  Good try on the planters fasciitis, wishful thinking in fact.  Nope it's Dystonia again, it was in my feet and calves and that's what was causing the pain.  The twisting of the muscles.  This time with more firmness my doctor urged me to listen to him.  Take the new medication in addition to my levodopa.  There are no added risks of Dyskinesia happening with Pramipexole like there is with adding more of my little yellow friends.  It would help with the muscle spasms & pain and would help level off the crashes from the "on" and "off" periods from my yellow saviors.  When I questioned him on the fact that I'm so young, this seems so fast that I need more meds that it had only been 13 months since officially being diagnosed and 18 since starting treatment his response was simple "it's normal progression for young onset Parkinsons".  I cried...

Now as we are about to venture into the Christmas season and subsequently ring in the new year I can admit defeat.  Not defeat in the sense that I have given up or have any intentions to.  But the kind of defeat where I admit my way didn't work and I have to let go and trust the expert on my disease.  Although it was a rough 5/6 weeks of adjusting to the new medication and a lot of very unpleasant 'stoned like' days I've now gotten used to it... and much to my surprise the pain in my feet has drastically improved, in fact most days I have none at all and when I do have it it's minimal and nothing in comparison to before.  I do find that my crashes aren't as severe either I am a bit more levelled out.  He assured me that if I tried this I would most likely see an improvement, that I would likely even be able to get back to working out harder again like a year before, that I would likely be able to start running again and that I would simply feel better.  I'm having some major set backs in sleep disturbances since the new drug was added but that's another story for another time.  Overall, and as much as I hate to admit it sometimes, he was right.  I fold, you win, my cards weren't as good as yours. 

So what have I learned in 2015 that I can take with me into the new year?  Well I've learned that I need to keep fighting and be stubborn, because that's just who I am.  I need time to process changes in my fight with Parkinsons and attempt to try various things in my own way just like I did this year.  I need to know that more medication is the last resort and not just accept another pill.  That in doing this and attempting 'my way' there may be frustrations, but at least in the long run I'll know I was my own health advocate and I tried to the best of my ability to fight it my way.  But I also learned that sometimes you have to admit defeat and listen to the expert even if that makes you frustrated and cry a lot.  I'm 'learning' to accept the fact that I am going to progress even though that sucks, it's a process and I won't ever master that one I don't think, but I will work on acceptance of the negative not just positive.  And most importantly I've learned that as always I have amazing people in my life to help pick up the pieces when I feel like I've completely broken apart.  Family & friends that are there to listen to me scream and shout when I'm angry, cry with when I'm upset and most importantly laugh with and laugh/shake it all off.  I now venture into 2016 with alarms set on my phone for two sets of medication to take at various intervals to which I still get annoyed and roll my eyes at when they go off.  But I have 'improved' since admitting that defeat.  I shall ring in the new year with a body that's working a little better, a body that has a bit less pain during the day and fewer "off" periods and I find joy in those improvements.

 

Life is a journey and although sometimes I don't know what road I'm travelling I'm grateful for the road and even it's twists and turns!

 

So, goodbye 2015, thank you for the lessons, thank you for the friends & family by my side throughout the struggles and the happiness, but good riddance to you.... 

Hello 2016, this Parkie is ready for you!!!

 

To my Parkie friends out there...

Never stop fighting!

Merry Christmas & Happy New year!

 

Think outside the box & never give up!

Parkinsons Disease can be frustrating to say the least for both young & old who have it.  I can't speak to how frustrating it must be to be older and very advanced in progression but I'm sure it's extremely hard.  Being Young Onset has it's unique challenges, most of which are infuriating to someone who should be in the prime of their life and likely feel annoyed & fed up with the struggles our wonky bodies can give us.  Regardless of where you're at in progression we cannot give up!  We must keep fighting, keep finding new therapies and exercise regiments that work for us, that work for the stage we're at.  PD may have taken a lot from you already, but do not give it any more power than it deserves.

We all need our meds, we all need to listen to the guidance and advice of our Movement Disorder Neurologists, but we also like I've said a million times before need to be our own health advocate.  You have to do the work too, you can't just rely on a pill and give up on the rest.  If you do, one thing I know for sure is you are going to get worse fast and most likely depressed as well.  And we all know that PD comes with many non motor symptoms such as depression, loss of sense of smell, impaired cognitive function, insomnia and the list goes on.  Add to those the motor symptoms like tremors, stooped posture, rigididy, impaired balance etc... and well, who wouldn't be a bit depressed?  However the fact of that matter is, this is the body we've been given and regardless of if you have Parkinsons or not it is your job to take care of it, your job to take the advice from your care team and your job to do what you need to do to live the best possible life you can with PD.  You may have Parkinsons but Parkinsons doesn't have you, unless you allow it to own you rather than you showing it who's boss.

So, TRY things, anything.  Think outside the box when it comes to your overall health.  Give acupuncture a try (from a real acupuncturist) it can be an amazing therapy to help with depression and anxiety, dystonia & many of your motor symptoms.  I go every 3-4 weeks and trust me, it does the body & mind good.  Give a PD dance class a try, there's one that happens here in Charlottetown PEI weekly and it's similar to chair yoga but put to music.  It's great stretching for our stiffness and we have some laughs and fun while we're at it.  Get moving!  Doesn't matter how but MOVE... Chances are if you're like me and stiffness is a big (or for me your biggest) problem then staying in one position for any length of time can be excruciating.  This in itself should be enough to remind us to move, go for a walk or a run if you can.  Go for a bike ride, it's quite remarkable how people with PD even with severe balance issues can ride a bike beautifully!  Go to the gym, who cares if people are staring at you wondering if you're having a seizure cause you're shaking, just keep moving.  Do not allow yourself to give up and stay put because one thing is for sure you WILL get worse if you do.  I tend to be on the stubborn side of life (most of the time) and I go to bootcamp as much as I can.  It's hard as hell and to be perfectly honest I know in my heart that my time for this type of activity is running out, but I'm just not ready to give up on that yet.  I'm not ready to let Parkinsons take that vigorous form of exercise from me right now.  So I will keep going, keep struggling but most importantly keep being proud of myself for however much or little of the class I can pull off.

My personal favorite therapy I take part in weekly is horse back riding.  Yup, you read it right, a Parkie on a Horse!  Craziness you say?  Nope, it's awesome!  When riding English style you have to post in your saddle which means pushing up and lifting your butt out of the saddle and back down again as the horse trots.  This means you aren't simply sitting there bouncing.  To canter your legs need to be strong and in good position & squeezing the horse.  You also need to sit up tall while on the saddle.  So basically this form of activity works on your posture, leg strength & balance.  All huge things that one needs to work on when you have PD.  All things this Parkie needs to work on so I don't have to give up my high heel collection!!!  Not to mention horses are amazing and good for the mind & soul.  In fact there are many people that use horses for therapy without even riding, just by being with them and touching them etc... They are like magical creatures and they are very smart and in tune to people.  When I ride on a bad body day the horse typically knows it's a bad day and will be rather lazy.  It's like it can sense, 'nope, today's not a great day for her legs, she's shaking more than usual it's not the day to be fast & perky".  You may think I'm crazy saying that but trust me it's true.  There are so many studies that talk about equine therapy out there for many neurological issues and various other conditions as well.

 Roy was the first horse I started riding lessons with.  A rather lazy boy chosen by my instructor to teach me the basics of position, trotting & riding!

 











TBone was horse number two for me.  A quicker fella' that required better position and strength in my legs.  He was the horse I started to learn to canter with!

And you know what I love the most about it?  I progress!  I started riding lessons for Parkinsons therapy in April of 2014, right after I was told I most likely had YOPD and started treatment for it.  I've now progressed thanks to my amazing teacher who is very patient of my body obstacles, Amanda Tweety from Giddy Up Acres to my third horse, Whisky!  He's the guy who needs a rider that is in proper position to keep a canter going.  I'm still working on it, and it isn't easy for a Parkie but even on the bad days, it's fun!


My, what a wonderful thing it is to "progress" at something in a GOOD way.  PD progression sucks, big time, but when you find an exercise or activity that's good for your body, great for PD & slowing progression and you get better at it, then it's a beautiful thing.  Progressing in a good way for a change... Now I'm not saying that riding a horse is perfect therapy for anyone with Parkinsons.  Obviously there are some people who are farther along in progression and this would be dangerous.  My point is just because it may seem strange or "outside the box" it doesn't mean it won't be fabulous for you.  Try new things if it doesn't work for you move on to something else.

Always keep moving & think outside the box

Just don't give up, don't give Parkinsons that power

YOU are the boss, make sure PD knows it!

Are you going to the World Parkinson Congress in Portland in 2016?  It's going to be awesome, I cannot wait!  So much education will happen there about research, exercise, living well with PD, you name it!  Check out their website for info:  http://www.worldpdcoalition.org/ 
And be sure to check out the Power Through Project and use that to encourage & motivate you to keep moving!   https://www.powerthroughproject.org/en/home

Here's an old post about riding from about 6 months after I had started riding therapy:  http://natashachronicles.blogspot.ca/2014/09/there-is-something-about-outside-of.html

And an article in the Parkinson Society's National ePost from last fall:  http://parkinsonpost.com/natasha-discovers-her-perfect-therapy-at-giddy-up-acres/

My Top Ten Parkie Pet Peeves!

There are things about Parkinsons Disease that are just super frustrating to those of us that have it.  And then there are the things you hear about Parkinsons that are also annoying.  So I've compiled a list of my Parkie Pet Peeves.  Now before you read on, let me give a bit of a disclaimer and be clear these are MY pet peeves, everyone with PD is different (we're like snowflakes remember) so not everyone may have the same frustrations and some of the things on the list may not be bothersome to others.

How are you feeling/doing?
Now this isn't a bad question by any means, the reason it makes the pet peeve list is because of when it's asked with the 'sad, I pitty you' face.  I personally don't like to be felt 'sorry for' although I understand the concern is genuine and I am appreciative of that.  But the next time you ask, ask with a smile! 

The caregiver term when in reference to a spouse.
Now this I know does not bother some people.  However for me it makes my blood boil.  If my husband ever were to introduce himself to someone as my 'caregiver' I would be mortified.  Because to me that would be like him saying "this is my patient, the person I have to look after because she's not capable of taking care of herself".  I watched a program on CBC not long ago called Keeping Canada Alive about health issues and hospitals/services etc...  There was a husband & wife on the show and he had Alzheimers Disease.  During the interview his wife said "They keep calling me his caregiver, but I'm not his caregiver I'm his wife.  And I'm just doing what any wife would do for their husband because I love him."  That moment touched me and I was grateful to hear her explanation of why she is NOT her husbands caregiver.  I'm lucky, my husband feels the same way and he always simply says "in sickness and in health".  Now don't get me wrong there will come a time I'm sure when I'll need his help with things, but I would hope when that time comes he'll help me because he loves me, not because he is caring for a patient that happens to live in his home.

You look great and don't look sick at all!
Why thank you, because I'm not 'sick'.  I have Parkinsons Disease and that doesn't mean that I plan on spending all my days in sweats looking like a bag of crap.  I struggle with a lot of things but I do make an effort to be 'presentable' when I'm out and about, unless you see me right after I've been to the gym or run into me on a particularly bad day where it was a real struggle to get out of the house.  And if you see me on such day then I had no choice but to go out for something.  A compliment can make anyone feel better and it's very sweet, but perhaps leave the 'you don't look sick' part out.

Medications
I hate pills, but I need them to survive.  This is why I struggle so much when I'm told I need to add a new medication and it takes me 6 months to accept that and take it.  I'm stubborn, I need to figure these things out differently then some.  Being 38 years old and needing to set alarms every couple hours on my phone to remember to take my 2 types of medication at various times in the day just so I can move around properly sucks.  Needing a pill to kick in over the course of an hour in order to simply get out of bed & walk through the house, that warrants the pet peeve list!

You'd never know you had Parkinsons with how busy you are!
Hmmm... so again, should I stay home in sweats everyday feeling sorry for myself because I have PD and I can no longer work, which is very upsetting for me by the way.  Should my two children suffer and be stuck at home all the time cause Mom has PD?  Nope!  I won't let it go down that way.  Yes, I am busy, I'm a Mom of a 7 and a 4 year old and my husband works on the opposite side of the country.  I am busy helping with community events and charitable work because those things are important to me and they make me feel like I'm still a contributing member of society despite the depression that comes with not being able to go to work everyday anymore.  They are things I strategically plan around medication doses and when I'm "on" & space out over the course of enough time to do.  Not to mention the more on the go and 'busy' I am the better I feel.  Yes, it's exhausting and insomnia and exhaustion are two things that go hand in hand with PD, but my body works better the more I'm up and moving and being busy is actually healthy for me.  Trust me I have my days where I stay in my pj's all day long and I'm fried, but overall I try and keep busy for both my body and my mind.

Oh crap, I forgot!
I have an app on my phone that has my entire life and families schedule in it.  I also have a 2nd calendar on the fridge with it duplicated.  My phone is constantly "dinging" with a reminder of something I need to do, a place I need to be, a medication to take, you name it.  Remembering to do anything is not my forte anymore and needing to have multiple measures in place to not forget is a big pet peeve, but thank heavens for the technology of today's world!

What?
I'm very conscious of the fact that my voice has gotten softer and I tend to mumble.  Therefore when I'm out in public or with someone else I actually focus on speaking loudly and clearly when in those situations.  I now don't just talk to someone naturally but yet I have to think about how to talk to someone.  When I'm at home with the kids or hubby I'm constantly hearing "what?" "Natasha, I didn't hear you, you're mumbling!".  Thankfully it's nothing severe but it's definitely a pet peeve when things that should come naturally need extra focus and to be thought about when doing so.

Procrastination is the art of keeping up with yesterday.
Oh the joys of not having the motivation to get a project completed especially around the house.  Or the constant rushing to complete something because you're just about out of time, despite the fact you knew you should do it two weeks earlier.  Apathy is a common issue for people with Parkinsons, and although when it comes to things that are extremely important to me I always complete the task, but in general everyday life there's a lot of times I just let things slide cause I can't be bothered.  So not naturally my personality and dealing with changes in who you are and how you act is definitely pet peeve worthy.

Progression
Like I said in my previous post, I hate the word progression.  But it's much worse to 'feel' it than hear the word.  I work really hard to take care of myself to the best of my ability.  Exercise regularly and as hard as my body will permit, regularly participate in alternative therapies and all the things the Doctor and research says I should do to improve my quality of life and slow progression.  However, despite all those efforts it's still going to get worse.  I have no doubt it gets worse at a much slower pace than if I sat around like a lump and did nothing, but I still do and continue to progress.  I know when people see me they wouldn't know I had PD most of the time if I wasn't public about it.  However those individuals don't spend 24 hours with me.  They don't see the times where my meds are not working well or worn off.  They don't see me first thing in the morning.  They don't notice the things only I could, like how my tremor & other issues are starting to move to the left side.  They don't feel the pain I experience day in and day out when meds wear off because even when that happens I still have a smile on my face if I'm out and about.  They don't know what it's like to sit in your Doctors office and be told you are getting worse and that it's 'normal progression'.  They don't get how scary that word is and how very much it sucks.  Progression by far is near the top of the list on my Parkie Pet Peeves but there's no way of getting rid of this one.

They lost their battle to Parkinsons
OK, this one right here is the big winner.  I hear and see comments quite often where someone will say "my Dad lost his battle to Parkinsons last year".  Let me be VERY clear on this.  You DO NOT DIE from Parkinsons.  Yes it's a Degenrative Disease that gets worse over time, but it is NOT fatal and thank heavens for that!  Yes there are people that are elderly and have PD that may have health issues complicated by PD and that certainly can add to any factors in their passing but you do not die from PD specifically.  That being said a person with Parkinsons such as myself should NOT be allowed to be denied of life insurance, but yet I am now officially uninsurable for the rest of my life and I plan on the rest of my life being a very long one yet.  Definitely my biggest pet peeve of the list!


All the above pet peeves aside I'm still a very lucky woman.  I have a husband who is incredible, loving and very supportive that I know will be there for me as time goes on no matter what.  And that I know will NEVER introduce himself as my care giver (cause I may hurt him Ha! Ha!).  I have two beautiful children that keep me busy and active and that's what helps keep me in better working condition.  I have wonderful friends and supporters that make me feel loved and cared about and that I know will be there if I need help.  I am young, I'm still very new into this journey of PD despite the fact I've had some progression already, but I'm thankful that it's slow.  I'm hopeful for new treatment options that are on the horizon, hopeful that someday there'll be medications to help slow the progression like those that exist for some other Neurological Diseases.  And of course I am hopeful for a cure someday for all of us that pray for one. 

Take my Pet peeves with a grain of salt, for the most part I try and laugh it all off, or sometime I 'shake it off'.  I know that most of these things are out of my control and could always be worse, I'm still extremely fortunate and blessed.  And all the things I hear are meant with well intentions and for that I say thank you!

I dislike the word 'Parkinsons' but I hate the word 'Progression'

Anyone who knows me well likely knows that I am pretty stubborn, I often like to think of it as determined though.  My husband would likely disagree! Ha! Ha!  I think that a lot of times when you hear stubborn you think of that word in a negative context, when in reality I believe it can be a very important trait.  Particularly if you're dealing with something like Parkinsons Disease.

Six months ago my movement disorder neurologist confirmed I had Dystonia in my right hand and the starts of it in my left.  Dystonia is a movement disorder that you can get on it's own or as a symptom of PD.  Essentially it is when you have sustained muscle contractions causing twisting & repetitive movements and it like PD is progressive.  At that time my levodopa was working well for about 2 hours for fine motor things and 4 for the stiffness and I take it every 5.  I was managing the "off" time by not staying still much, the more I move around the more it helps with the stiffness until my next dose and "on" time.  He at that time wanted to add a new medication called Pramipexole which he said would help level out some of the peaks and crashes and would also help with the Dystonia.  I was devastated, in fact a wrote a blog post about that visit and how I threw myself a week long pitty party & cried most of the drive home before dusting myself off and saying "Nope, I'm not ready for more drugs I'll find another way", and I went to bootcamp for 8 weeks and started acupuncture regularly.  And that's just what I did and I thought I had managed quite well with it; telling myself I didn't need anymore drugs yet I'm just too young Screw You Parkinsons cause I got this!

Well it all did work in a sense.  I always feel better the harder I work out and the Chinese style acupuncture did incredible things for my hand.  It went from pain 24/7 to only hurting when I used it, and is still like that which is incredible!  However as the weeks turned to months I started noticing changes in how my body was working.  My levodopa was starting to wear off around the 3 hour mark and when it wears off I can instantly feel it in my back.  It starts with a stiffness from the lower part moving up to my neck, I start to get the stooped posture I wake up with everyday and then the stiffness gets so bad it causes a considerable amount of pain.  I also started to notice mild tremors starting in my left hand (everything has been isolated to the right side so far).  And then there was the muscle spasms and twitching that I used to have a lot of prior to starting treatment for Parkinsons.  Now I was getting it in my left forearm, a regular twitch that caused my middle finger to pull into the center of my hand with every jump of the muscle in my forearm.  Some days it would last a few minutes other times it would annoy me for hours.  And then.... the worse came... As I was trying to get practice runs in to run the 5K in the PEI Marathon I noticed the stiffness around my ankles was quite bad and made running difficult.  At first it was just frustrating but then pain started in my feet.  Mostly in my right but also in the left and it was excruciating.  There were days I only stood if I absolutely had to and even my 7 year old was starting to ask why Mommy was limping.  However, I had the answer for this!  I had Planters Fasciitis, likely the result of years of wearing high heels.  Because after all the pain would go away if I put a pair of heels on and it felt like it was in the heel of my foot.  I thought to myself 'this sucks but I can treat that, not the end of the world'.  I booked some extra acupuncture some weekly massages and physio and it would ease the pain and have me walking without the limp but it never seemed to last more than a couple days.

And then it was time to travel my usual 4 hours each way trip to see my PD Doctor where for the first time, I had a list of things I needed to discuss with him.  He asked how I was doing and my initial response was "I think I'm getting along pretty good!"  As the conversation unfolded he was not impressed with the decrease in how long my meds work, thought it was great that my hand was improved form a pain standpoint with acupuncture but was still concerned.  Then I mentioned the slight left hand tremor on occasion, the twitching and my feet, told him my self diagnosis.  His initial response was to agree until he had me take off my shoes and started looking and feeling the fleshy part of my feet and my ankles/calves.  I quickly explained to him that it couldn't be Dystonia like my hands because my toes weren't curling but he wasn't responding.  He was still pushing on spots asking if it hurt and feeling the muscles.  He then explained to me that he was sorry and that my self diagnosis was wishful thinking on my part.  That it felt better when in heels because it was stretching out the twisted up muscles (silver lining I can still wear my heels).  That I did in fact develop Dystonia in my feet.  He went on to explain about my levodopa off periods, the pain, the twitching all means that I need to take the new medication he tried to give me last time.  That it would help with the spasms, the pain and level off my crashes.  That it was either take more levodopa so I don't go as long in my "off" periods and increase the risk of when I'll get dyskinesia or take this new pill that has no worry of that.

I was NOT happy, in fact it was the first time that in front of him I fought back tears.  The other times I remained strong in the appointment and bawled in the car.  I explained to him that I've only been on treatment for a year and a half and this just seems to fast to get this much worse and I asked him if it was too soon?  He simply said in a gentle voice "It's normal progression for Young Onset."  There's that damn word again, progression... I hate that word more than I hate the word Parkinsons.  I do everything I'm suppose to do to slow progression, everything the studies say, everything he tells me to do but yet I still get worse.  Now I know I have a neurological disease that's degenerative and progressive I'm not an idiot, I know as time goes on I'll get worse.  But I can't help but think "why so soon?"  It was explained to me that although in my mind I see it as being treated for Parkinsons for a year and a half, that in reality I've had PD much longer than that.  It was almost a year before I started treatment for it and 15 months to get officially diagnosed.  However even long before that I had PD and those dopamine producing brain cells had been dying off.  So I see it as a year and a half and all this progression when really it's likely more like years.  I was glad to have company on my drive that day as a distraction, but I admit I spent the majority of the night crying my face off.

So you see, my stubborn side said no way to his new meds last time.  I still don't think that's a bad thing, I have always said that you need to be your own health advocate.  Knowledge is power and you need to find your own way.  And one thing I love and appreciate about my Neuro is that he isn't pushy, he gives me the facts and also gives me time.  He understood my unwillingness to take it the last visit but this time was a bit more forceful, yet still not making me feel like I had no choice in the matter.  He's empathetic to the emotional struggle as well as the physical.  He very much assured me that if I just trust him this time that he feels I'll have significant improvements, that I may even be able to run again and he's confident that I'll be able to workout harder again like I had been a year ago.  He said that it will help with my apathy issues and give me some of the motivation I've lost back and that I won't be in as much pain.  All those things are good things and as frustrating as it all is I know that I have to trust him and I know that I've gotten worse and I know that I need to do this.  And if it alleviates the pain and some of the suffering I'm in now then it'll be worth the month long process of 'dosing up' that I'm in the midst of once again. 

Most of all I have to remember that if this gives me improvements it means I'm a better Mom.  I don't like it when Samantha notices my negatives changes, it stresses me out and makes my heart hurt.  I don't want Izabella wondering why Momma is walking funny or why I won't pick her up as often.  Throughout this entire journey I've always said everything I do, I do for my kids.  That I will be a present, fun Mom that makes lasting memories with them, not a lump on the couch.  So, with that said I admit that my way didn't work for very long and that although I'm stubborn I also know when to admit defeat and trust my doctor.  I think it's fine to not take their advice once or maybe twice while you try other things, research your options and whatnot.  But if you continue to get worse and ignore your doctor who's an expert on your disease then you are the kind of stubborn that is a negative.  So for now I embark on another phase of my journey and I trust his knowledge and look forward to proving him right and seeing improvements.

Parkinsons may change in a year, but ones determination should not!

In the run of a year with Parkinsons things are bound to change.  Everyone of course is different and progresses differently and a huge factor in how fast or slow that may be is dependant on the Parkie's decision to exercise and keep moving or not. 

Last year just a month after I had officially been diagnosed with YOPD and 6 months after first hearing that they thought this was what I was dealing with and treatment started I ran 5K in the PEI Marathon.  It was hard, but I trained as best I could and set it as a goal for myself.  It was an extremely emotional event for me and crossing the finish line (well even before) brought me to tears.

I decided to try to do it a second year.  Now don't get me wrong I realize it's 5K, it's no half or full marathon, but it sure feels like it for this body of mine.  I set out like last year to train, never intending to run the full distance until the day of because my body maxes out at 2.5 or 3K of running on a good day.  To run 5K is pushing myself past the limits and causes a considerable crash for days afterwards.  None the less I still wanted to say "Screw You Parkinsons, I can still do it!"  However, training did not go well.  It was clear to me that although I've worked very hard to stay active and slow progression things are getting more difficult.  I can't run as fast or as far.  In fact many things in my daily life I find I'm not as good at or am getting slower at accomplishing.  Admittedly small changes and I'm grateful that they are minimal I still notice the difference.  I tire a lot more easily than I did a year ago even with just day to day puttering around.  I'm closely watching for these changes because I know what it means & watching for them can be a bad thing.  It allows me to see the negatives when I really do strive to stay positive.  It's frustrating as hell and I admit sometimes gets me down in the dumps.  However, I committed to running this event again and accomplishing this goal and I wasn't about to let any of those things get in the way.  I found the stiffness around my ankles particularly tough and it was causing pain when I would try and run.  So most of my practice runs resulted in only getting about 2K with many walk breaks and ending it off with me being annoyed.  So the week of Marathon weekend I decided no more practicing.  I would save as much energy as I could and rest and take care of the pains and hope for the best that morning.

I was so grateful to have my cousin Jenny travel from a different province to come and run with me.  She was the perfect partner because she's a personal trainer, so I knew she could help me finish.  I won't run that far alone because I need someone with me to help push me to finish and make sure I'm ok too.  My dear friend Lorena who ran with me last year sporting the same custom made "Screw You Parkinsons" shirt had decided to try her very first 10K, which was much to far for me.  She still sported her same matching shirt she wore last year and she started with us and then after a couple of kilometers branched off, not before stopping to give me a hug where we exchanged some "you got this"!  It was harder than last year, but I did learn a few tricks from doing it once before and I made sure I walked the couple of hills on the route this year to save my steam.  I most definitely had more walk breaks than last year and I was slower.  However I said the day of that as long as I finished and ran at least 60% of the course I'd be happy, but that if I could finish it in 40 minute I'd be ecstatic.

Well, I finished, I did walk some but ran more and I was able to finish with my cousin by my side in a time of 38:21, so yup, I was pretty ecstatic!  My father and my two sweet girls were there to greet me at the finish line and yes there were tears.  Much to my surprise my tremors were not as bad as they were the year before although definitely present and I'll admit despite the emotions and excitement that I completed it I would be lying if I didn't say I was happy it was over!  Ha! Ha!  I could not have done it without Jenny to keep me focused and motivate me right to the end and words cannot express my gratitude for her being there for me.  I was so excited to stand at the finish line and cheer as loud as I could when I watched my bestie Lorena cross the line from her farthest run ever in 1:17:46!  I know she was (as she always is) proud of me but I was incredibly proud of her too!  Way to go girl!

My girls & Momma at the finish line!  They are why I do this stuff! 

My beautiful cousin Jenny who helped me finish!

 

The three of us!  So grateful for these girls! 

I can honestly say that as of this moment I doubt that running will be part of my regular activity anymore.  I'm simply finding it too hard.  However, I won't say never just yet.  Regardless of if I do it again or not I'm extremely happy that I could add a 2nd medal to my bedroom mirror to look at everyday and remind me not to give up.  After all I never thought I'd have one!  Regardless of the fact that it may be harder and I may find I'm a bit slower at things or finding them a bit tougher that does not mean I will give in, give up or lose my determination to keep trying.  I know from my 3 month break from exercise after surgery last December just how important it is.  I know the studies are correct when they say it can slow progression and make your body work better because I stopped and I found out just how uncooperative my body was during that time.  So no matter what type of activity I do I will do something and I will stay as busy and as active as I can for as long as possible. 

So for all my fellow Parkie friends out there set yourself a goal and achieve it!  It doesn't matter what it is perhaps it is simply to commit to going for a walk three times a week, just do it!  Try it for a month and see how much better you feel emotionally and how much better your body works.  Find something that suits your abilities and just get off your butt and keep moving! 

 Link to an interview done prior to the PEI Marathon about my journey with PD, exercise and running:

https://www.youtube.com/watch?v=AbkkQCmvnHA

 

 

Parenting with Parkinsons

I've had a lot of people touch base with me who have YOPD and small children.  It's great to be able to share struggles and help find solutions to the world of Parenting with Parkinsons together.  Having a degenerative disease that affects not only yourself but the entire family can be a tough pill to swallow when it comes to parenting.  Trust me, I know it's hard!  Parenting in fact is one of the best, yet toughest jobs anyone will ever have in their life and parenting with Parkinsons can be extremely difficult and makes it that much more challenging.

Everyone has their own way of dealing with it.  I know some parents who have done their very best to hide the fact they even have PD from their children.  A wait it out method of wanting them to be older when they are told so they can understand the scenario better.  I know others who very much involve their children in their journey and use it as a life lesson to encourage their kids to participate in fundraising initiatives for the cause.  There are various other scenarios as well and the fact of the matter is that nobody knows their own child (or children) better then them.  So I do not think there is a right or a wrong way to go about parenting with Parkinsons.  You simply have to find what works for you and your family.  That being said, in my own experience I've come up with a list of suggestions of what I feel are important while parenting with this disease, but again not everyone's situation is the same.  Take it as some 'food for thought'.

1.  Don't keep your children in the dark. 
You clearly notice the symptoms of your Parkinsons hence ever going to a doctor to begin with to end up with a diagnosis.  Don't assume your children don't see your issues.  They are smart, VERY smart.  In fact I think children are much more perceptive than adults are and often very quickly sense when things are wrong.  So imagine them noticing some of your 'issues' despite your best efforts to hide them and what goes through their little minds of wonder.  Be honest with them, find age appropriate words to try and explain to them that you have Parkinsons and what that means so you can try to alleviate any fear they may have.

2.  Stay engaged with your kids.
This is so important.  Think back to what kind of a parent you were before you had PD or before your symptoms started to arise.  What kind of Mom or Dad were you then?  Were you the parent who got down on the floor and played with your kids, or always took them to the park, or played catch with them all the time, or never missed a soccer game?  Then keep doing it!  Don't get me wrong, there are things I used to do for my kids like building luge tracks in the backyard from the pile of snowplow snow in the winter that I no longer can do.  BUT, that does not mean I can't do other fun things in the snow with them instead.  Last winter we did snow art with food coloring instead, they loved it and we still had our playtime in a form that was much more manageable for Mom. 
Put yourself in your child's shoes, if you were always with them, playing with them and engaged with them before PD imagine how they feel if suddenly you're always on the couch and pawning them off on their other parent with little interest or ability to still have fun with them?  Your child may know you have PD and understand to some extent what that means, but a child's mind doesn't rationalize the way ours do.  The last thing any parent would ever want for their child is to have them think that Mom or Dad doesn't love them anymore.  The reality of going from an engaged parent to a lump on the couch is that they may very well feel like they are no longer important to you...

3.  Make NON Parkinsons memories with them.
I am a big believer in my girls knowing that Mom has PD and being involved in fundraising for it and raising awareness about the disease.  I think there are valuable life lessons in these initiatives and having your kids take part.  However, you do not want the only time you spend fully engaged with them centering around the fact that you have the disease.  Make fun memories with them on your good days.  Of course there are going to be days that PD takes control and you're struggling and that's not the time to choose to go on a nature hike with them.  However on the better days take them to the beach or the amusement park or the zoo, have a family game night.  Whatever it is that you know will be fun and exciting for them.  It doesn't need to be something that costs money, children want our TIME, attention and love.  Think back to what some of your favorite childhood memories were?  Chances are they were simple pleasures like a road trip or baking with your Grandma or going to a farm to see the animals.  Whatever you do, do not let your kids grow up when the only memories they have of you are ones of you crashed on the couch or locked in your bedroom.  Not to mention there are studies out now that prove that puttering around and staying busy can actually help PD symptoms.  So get on the move with your kids, play with them and make memories and enjoy their cuddles and laughter.

4.  Don't let the guilt take control.
On those days you just don't have it in you to 'play' or be on the go with the kids, don't beat yourself up.  I often will have a crash day where I'm not the most fun Mom in the world.  It sucks and it makes me feel guilty.  However on those days I try and focus on the fact that I really do try my best to be engaged and an active part of their lives and memory banks.  So, explain to them that you're not feeling the greatest today and that you're sorry but you just don't feel like going to the park.  That you need a bit of a down time or a rest day and you promise you'll do something fun with them later in the week.  (Don't promise tomorrow, because we all know sometimes a bad day can be multiple bad days).  Be realistic with your activities, promises and abilities.  Do not let guilt take control of your parenting methods and let them become holy terrors and get away with murder because you feel guilty.  That won't help them or you in the long run.  So instead be honest and try and give yourself a break, being too hard on yourself won't make anything better.

5.  Do not let your spouse become a single parent.
Rely on your other half as you need to.  When you just can't get to that hockey game because you know you can't handle the cold that day or you're just exhausted, send your spouse instead.  That's perfectly ok.  However, do not rely on them to the point where they are the only engaged parent in your kids lives.  Co-parent in the ways that you're able to and make necessary adjustments but do not stop being a Mom or a Dad.  I often say "I am a MOM first, Parkinsons comes second" and I try my best to live by that.  If you give up parenting because you're depressed, which is a common PD symptom or because you don't think you "can" do those things anymore you are only going to cause resentment in your relationship.  The last thing you want to do is make someone you love feel hurt or resent you for not at least making the effort to chip in, even if it's not the same ways you once did.  My husband works in a different province, this can be very hard sometimes particularly on the bad days.  However, I think it's also beneficial for me as a Mom, because I do not have the choice of relying on him to do everything for the kids or around the house.  I appreciate him when he is home for everything he does do to give me a break.  So don't expect them to do it, be appreciative for what they do, but always chip in!

The reality of life is that sometimes things just don't go the way we planned them or expected them to.  I can say with certainty that no one with PD ever thought they would live a life trying to manage the disease.  Most definitely no parent out there thought or had hopes and dreams of being a parent with Parkinsons.  However, that's what has happened for many of us.  We cannot change that, but we can change the way we deal with it moving forward.  You can still be a great Mom or Dad, a loving wife or husband and a caring friend to those you love.  Your children look up to you, love you unconditionally and simply want you to love and be there for them.  Do not let Parkinsons take that away from them, nor the joy it will give you to be their parent!  Parenthood is a gift, one that some people long for, so don't take it for granted.  Parkinsons has already taken enough from you, don't let it take away the greatest job in the world too....

I am a MOM first, Parkinsons comes second... and it always will! 

Have fun with them!  Even if it means just watching them play in the snow in the winter, or taking them for an ice cream in the summer!  Sometimes the little things are all that matter!

 

 

An article I was interviewed for recently about Parenting & Parkinsons:

http://www.theguardian.pe.ca/News/Local/2015-09-05/article-4268415/Young-people-also-get-Parkinsons,-as-P.E.I.-mom-finds-out/1

Previous post.... "Guilt is to Motherhood as Grapes are to Wine"

http://natashachronicles.blogspot.ca/2014/08/guilt-to-motherhood-is-like-grapes-to.html

Happy 1st Anniversary Parkinsons

The typical first year anniversary gift is paper.  I pondered this and what kind of gift could this Parkie get for my 1st anniversary with Parkinsons?  Some might think tissue paper for the tears?  Toilet paper cause its crappy?  Nah, I'm thinking more happy types of paper.  Like photo paper with some photo's of my amazing family & friends and all the great things I got to do this last year.  Because after all, a year and five months ago (prior to starting treatment) my life really was crappy.  I was depressed because my body was falling apart and I didn't know why and nobody seemed to be able to figure out the cause.  I had my oldest daughter crying herself to sleep often because she was scared that Mommy was dying because she didn't understand why often I could barely get out of bed to walk around.  I couldn't explain it to her because I didn't know why either.  I was scared too.  I was barely functioning and it was horrible.  Today, in comparison to 18 months ago life is good.

And.... apparently Parkinsons really didn't want me to forget I had it on this first anniversary.  I don't think I would have anyways but thanks for the painful reminder in the wee hours of the morning.  The gift of pain & no sleep wasn't exactly what I had in mind, remember, paper?  I was up most of the night extremely stiff and soar and by 4am was in so much pain I had to cave and take a half a levodopa and spent some time laying on the hardwood floor stretching & trying to find a way to ease the stiffness & pain.  I finally was able to get back into bed at 6:15.  Thankfully my oldest daughter got the little one breakfast when I explained Mommy didn't sleep & was soar.  It's rather sad that she understands this and is willing to help Mom out by taking on the role of little Mommy for me.  God love her!  They had cereal & let Momma stay in bed a bit longer & thankfully I when the morning meds kicked in I was ok again.  So thanks PD, not to worry I know you're there!

Bad night & jokes aside.  Today on my anniversary of officially being diagnosed the first word that comes to my mind is gratitude.  Because even though I had some reflection time this week and some 'blah' moments even today, when I think back to a couple years ago I'm so very grateful that I was finally diagnosed.  Finally found a treatment that helps life be more manageable.  Of course I still have days where I'm crashed on the couch or in bed.  Still have days where even the simplest of things can be a challenge, but more often I have good days.  Not days like before I had PD with a normal body when no thought process was required in order to simply get out of bed in the morning.  I didn't need to plan getting up over the course of an hour while I waited for meds to kick in.  I could hold a pen to write or use a pair of scissors with ease and other such fine motor things that I find very troublesome now.  However my 'new' form of good days are incredible in comparison to those dark days when I didn't know what was wrong with me.  Therefore, I am grateful.  I've been able to play with my kids, perhaps not the same way as before after all I can't build luge tracks in the snow in the back yard anymore, but I can still have fun with them.  I've been able to go to events, enjoy friends & family again and for the most part rarely need to decline and invitation because I'm unable to get out of bed and walk.  I may need to time activities around medication doses, but I've become a master of knowing when I'm "on" and when is the best time to tackle daily things in life.  Overall, I'm lucky and therefore I choose to celebrate my 1st Parkie Anniversary!

And how does one celebrate such an anniversary?  Well when you're as lucky as I am two of your best friends know the date of your diagnosis just like they would a birthday and they take you out to dinner to celebrate. 


Odd you say?  Perhaps some might think so.  I however see it as two rays of sunlight that I'm lucky to have in my life making sure that I know they are there for me.  I'm blessed to have many friends, family & supporters in my life including my amazing husband.  But lets face it, a gal needs girl talk!  We all have those friends where we're comfortable to tell all too!  Well, these two likely could use me to tell less sometimes.  Ha! Ha!  They are the only people that know all my inner fears about life with Parkinsons.  Cause lets face it, I'm human.  Of course I choose to see the glass half full and I try and remain optimistic and exercise and do the things that I know will slow progression so I can live a full life with my family.  However I'm also not oblivious to the fact that I have a degenerative neurological disease.  I'm well aware that until a cure is found or perhaps a drug to slow progression that I will have more struggles as time goes on.  I choose to focus on the good, being grateful and staying optimistic but I'm also not in denial.  When I have a bad day emotionally or a day where my meds might not be working so great for whatever reason; and I'm really struggling with things I know that I can tell them I'm scared and they listen.  They don't tell me everythings going to be fine, they don't lie and tell me it's nothing to worry about.  They simply tell me that its ok and whatever I am or going through "we" will get through it.  That is true friendship.  So yes, it may seem odd, but I couldn't think of a better way to celebrate my Parkie Anniversary! 

If you are reading this and you have PD, or any other disease for that matter find someone you can talk to and be open and honest to.  Whether it be a support group, a family member or a friend.  Bottling that stuff up will not make your journey easier it will not make you stronger.  Find a way to get it off your chest so you can set the bad or scary stuff on the shelf and find the joy in everyday, even the tough ones.  I'm blessed to be able to talk to my husband about all these fears as well, some don't feel comfortable doing that and want to shelter their loved ones from the fear.  I suppose in a small way I do in fact do that a little, but I try not to.  I have a sister who is there for me no matter what that I can talk to about anything that bothers me and several other friends as well that are not only very supportive but great cheerleaders and laugh at my often inappropriate jokes!   Two of which don't live near me and I wish we were closer, but I know they are there for me when I need them and are constantly rooting for me.  I also have a great community of new friends and support from my fellow Parkies both near and far.  This blog has enabled me to connect with so many amazing new friends to share in this journey, bounce ideas off and so much more.  The Parkie friends I've met throughout the Maritimes are amazing and provide me with great information and comfort when it's needed.  So how could I not be grateful for all of that, Parkinsons or not?  So find that in your life if you're struggling...

So, I guess whether I wanted it or not (NOT), Parkinsons and I are in it together for the long haul. 

So to my Parkie self... Cheers! 

 

Here's to many more years of me fighting with you (and trust me I will fight)

and not letting you kick my ass! 

Here's to 'shaking off' the blah days, long nights and painful moments!

Here's to many more anniversaries that I will
celebrate the joy I still have in my life! 

Here's to many more anniversaries where no matter what changes I experience I will be grateful for what I still accomplish!

Here's to 1 year down and many, many more to go!

Now... where's my plastic wine glass? 

And here's where I was a year ago today.... because I found myself doing a lot of reflecting this week.
It still applies.... Parkinsons, you picked the wrong chick to mess with!
http://natashachronicles.blogspot.ca/2014/09/the-verdict-is-in-but-with-knowledge.html

Parkinson SuperWalk 2015 ~ Celebrating "Everyday Hero's, Extraordinary Hope"

This weekend all across Canada millions of people participated in the annual & 25th Anniversary of the Parkinson Society's Parkinson SuperWalk!  The theme of this great event is "Everyday Hero's, Extraordinary Hope" and all the funds raised are used for research, advocacy, education & programs for people with Parkinsons.  Obviously this is a cause that's dear to my heart now.

This was my second year participating in this great event, although last year was a bit odd.  It was 15 months after my body started to break down.  I had been on treatment for Young Onset Parkinsons for over 5 months at the time of the walk and knew because it was working that I had YOPD, however I still had a week to go before my follow up appointment where I'd be given the official diagnosis.  So I was unsure if I should participate and attend or not... but my movement disorder neurologist had told me enough about what would happen if the medication worked and in turn I had the disease so I knew in my heart (and body's new better use) that I did.  So I registered a team rather last minute and some amazing friends & family jumped aboard and off we went.

This year however marks just about a year into my diagnosis, there's no denying I have it anymore.  So this year's Parkinson Superwalk seemed almost like my first and that much more important.  I decided to register as soon as it opened in the spring and put a call out on social media for people to join the team.  Well, let me tell you; that day I had NO idea what was going to happen in the months coming.  13 people registered to join my team without ever being asked.  That in itself is beyond heartwarming to me without a cent of fundraising work being done.  To know that there are so many people out there cheering me on, supporting and loving me and encouraging me to stay strong and keep pushing forward is an amazing feeling.  I have said it once and I'll say it again; although I would have never expected or chosen to have Parkinsons and as scary as sometimes it can be I have gained so much more from this disease than it could possibly take from me.  Invaluable lessons about life, myself, friendship and so much more.  I am grateful beyond words for these amazing people in my life, there's no way I could ever possibly explain to them just how much it means to me and how much it lifts me up.

So as the team was formed it was time for a name.  Since often we see a lot of superhero's at the walks across the country we wanted something fun, hero like and catchy... And then they started brainstorming and "Natasha's Ninjas" was formed!  They went so above and beyond when it came to fundraising it's amazing.  They participated in car washes, yard sales, bake sales, selling tickets on prizes and some even went door to door asking for pledges to support our team and the Superwalk!  OH, and I cannot forget the Pie's for Parkinsons challenge... when I brought that idea to the team not only did they jump aboard but they did it with smiles on their faces and insane energy.  WOW.  My team rocks!  And the result rocked too!!!  I'm thrilled to say that this amazing team of mine raised over $5300! Woohoooo, way to go Ninjas!  I had set a team goal that I thought was far too aggressive of $5000 and a personal goal of $2000.  Both were exceeded!  And to all the people that donated, bought tickets, baked goods or items at yard sales.  Who made pledge donations, spread the word, shared the love, I thank you... From the bottom of my heart....

Natasha's Ninjas, BEST Team EVER!

Custom made team shirts (with my motto on the back) & Ninja Masks!

Prior to the walk starting I was touched when they spoke about my amazing team, about my journey with PD and how I share this blog with the PD community all over the world, how I sit on the board of Director's of the Parkinsons Society Maritime Region and how I'm an official World Parkinsons Blogger on route for the WPC in Portland Oregan in 2016.  Then on the fly was asked to say a few words (normally not an issue for this gift to gab gal).  However as I stood at the mic I was overwhelmed with a flood of emotions and could barely speak through the tears as I made an attempt to say thank you to my team of friends & family.  There was so much more I should have said but I just couldn't get the words out.  Like thank you to all the volunteers in the room, all the family members, friends & care givers of all the other people there with Parkinsons showing their love & support to my fellow Parkie's.  To Dan the President of the PEI Chapter for all he does, for reaching out to me when I was first diagnosed & leading the way to support groups and programs available to me.  So much more I should have said, but the tears wouldn't allow it today.

 Emotional & Oh so Grateful

 

Then it was time for the walk to get started!  I ran the 3K SuperWalk last year and my goal was to do the same this year.  I was leary as I hadn't been running lately and just had a big week long crash from doing too much with the kids the latter part of the summer.  But, with a little help from my friends and my running team Lorena, Neleigha, Lana & Jeannie (and a few walk breaks for sure) we pulled off the run!  I know I do not need to run, but it's a mental thing for me.  Every year this event comes up that I'm able to run all or even a part of it is my way of saying Screw You Parkinsons!  You will not take me without a fight and I will stay as active as I possibly can to try and slow progression. 

My reasons for everything I do!

 

Because I am a Mom first, Parkinsons comes second and it always will!

 

Nobody gets more of me than these two beauties! 

 

 

 

 

 

 

If you'd like to see more pictures of my amazing team visit:

https://www.facebook.com/natasha.mccarthy/media_set?set=a.10156063324700501.1073741900.686625500&type=3

To check out some of my team's Pie's for Parkinsons videos visit:
https://www.youtube.com/channel/UC1j96wgdc_JiNIrMgeTZjIA

Article that was in the local newspaper prior to the SuperWalk:
http://www.theguardian.pe.ca/News/Local/2015-09-05/article-4268415/Young-people-also-get-Parkinsons%2C-as-P.E.I.-mom-finds-out/1

To everyone who made today yet another amazing day, thank you!  To the Parkinsons Society of Canada, Maritime Region & PEI Chapter great job to everyone who worked on this event Canada wide and to all of those that volunteered to make it happen both here in PEI and afar!  Events like this give us great hope, a sense of community and a feeling that we are not alone.

 

To my team, thank you... I love each and every one of you and appreciate you all more than words could describe.  To my friends & family that cheered me on from a far, sent countless messages of support and encouragement that I know would be with me if they could... Thank you... xoxo