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 work hard to live well with Parkinson's!

 

"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'!

A fitting quote for a Prince Edward Islander!

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!

 

https://www.michaeljfox.org/foundation/news-detail.php?podcast-how-can-exercise-help-manage-Parkinson

 

http://www.parkinson.org/Parkinson-s-Disease/Treatment/Exercise.aspx

 

http://www.pdf.org/en/parkinson_briefing_exercise14

 

http://www.parkinson.ca/atf/cf/%7B9ebd08a9-7886-4b2d-a1c4-a131e7096bf8%7D/EXERCISEBROCHURE_ENG.PDF

 

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.

https://www.youtube.com/watch?v=xHXP0xjxnq8

 

 

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!

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

"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! 

 I fight not only for myself, but for my beautiful girls...for my little family of four!

When life gives you lemons....

You make lemonade right?  Or that's how the saying goes... But what if you don't like lemonade?  What if you would rather a coffee?  Well I guess the purpose of that statement is to make the best of what life throws at you and many times we experience things that are out of our control.  So we can have a sour puss over it or we can try and add some sweetener to that lemonade and accept it.  Sometimes it's hard to find the sugar bowl though...

This has been kinda one of those weeks for me.  I've been in a bit of a 'funk' I guess you could say.  I think the colder weather and looming winter being around the corner has a bit to do with it.  When you're not working in the summer you can still find joy easily at a beach with some serious bouts of vitamin D.  I took advantage of that this summer a lot where I could sit my butt in a beach chair and the kids could play happily unknown to them if it was a good or a bad day for Mom.  But with the change in temperatures lately I find myself really missing the career woman in me.  In particular missing the daily outing of work and the social aspect that it brings.  When I do get to spend some much needed adult time I often find myself listening to stories of their workplaces.  Naturally so seeing how we spend the better parts of our lives working.  As time goes on and the summer heat is missing I'm finding it more and more difficult to listen to the workplace stories.  A sense of jealousy coming over me for what I'm missing out on.  And even a twinge of annoyance when I hear people justifiably venting or complaining about something that happened at work that week.  I usually hold back the urge to say "don't complain I wish I could work".  I try and rope that thought in knowing they aren't saying or doing anything wrong they're simply sharing.  I guess I've just been finding I have less interesting things to share and I'd be lying if I didn't say it was a downer for me.

So this week in particular I found myself all too willing to stay in my pj's all day long when Samantha would get on the bus to school and quite content to laze around with Izabella for the day.  I even caught myself dosing on the couch after supper while the girls played together in the evening before bedtime.  Now this isn't the end of the world but not a pattern I want to allow myself to fall into often.  I am exhausted all the time, that's just par for the course with Parkinson's.  Something I typically do my best to deal with and keep going.  But I was allowing myself to feel lonely and secluded from the adult world because I had nowhere to go, no place to be and no meeting I was expected to be at.  So the lemonade was getting pretty sour.  I realized the other day that I had to dig through the cupboards and find the honey to sweeten it up and get myself out of the 'funk' before it got worse.  Because I tried that lazing on the couch feeling sorry for myself thing this time last year and it did nothing other than make me get fat and make my mental & physical state worse.  So I need to remind myself of that experience as to not allow it to happen again.

Thankfully today I had a day that I very much needed.  A day for me, to recharge.  To change my attitude back to the way I typically try and live.  Thursday's are my one day of the week I get "off" from my new life of being a stay at home Mom.  I love my girls more than life itself but everyone needs a break and my break used to be going to work.  So now my break is Thursday-me-day.  So after Samantha got on the bus it was the usual routine of getting Izabella and myself ready and out the door to drop her off at the day home they once both went to four days a week while I worked.  It was then off to my weekly riding lesson.  Despite my rut I had started to fall into this week I still got my butt on that treadmill everyday when Izzy went for a nap so my legs were feeling in fairly good shape.  I hadn't really lifted a finger all week other than that, so overall my body was quite cooperative from all the rest.  In fact times like that are when your mind can 'almost' play a trick on you into thinking that maybe you're ok.  Unless it's first thing in the morning when you wake up stiff and barely able to get moving feeling like you have a 95 year old body, stooped over like the hunchback of Notre Dame, until you get your meds into you, then you know.  But other times your mind will play those tricks, until you try and do something fine motor related particularly outside of my 2 hours of 'on' times from my Levodopa.  Thankfully after having a great chat with another young onset patient and some other online communication I have found I'm not alone in this feeling of your mind playing tricks on you now and then.  But that's a topic for another post.  So off to the barn.  My legs seemed to be in pretty good shape.  Did the usual walking and trotting on TBone, some two point.  An exercise where I essentially stand up out of the saddle leaning forward but with a straight back, heels down and remain in this position while he continues to trot.  I've found this particularly beneficial for my balance and it really works a pile of leg muscles while doing it.  Afterall I have to keep that balance part in check if I want to keep wearing my high heels!  But the exciting part of today, just one little thing that I think took me right out of that "funk" was doing something new.  I had my first attempt since starting riding for therapeutic purpose at a canter!  Super exciting.  My legs definitely have some work to do to keep him going that fast and a new set of muscles need to be used more efficiently but it was a new step for me in this therapy and even though it didn't last long I thoroughly enjoyed my attempt at it.  It was exhilarating and just what I needed!

So after that exciting start to the day the rest of it could only go up!  I then got to get some womanly pampering and had my nails done, then home for an extremely LONG hot shower with no children interrupting or asking to get in the tub or screaming or fighting in the background.  I almost didn't want to get out at all!  And then as afternoon hit I knew there was a PD support group happening in Charlottetown, I had been invited plenty but never made it to one yet.  I did attend one in Montague a couple weeks ago and although I was skeptical it was a small group with a good topic and I didn't find myself nearly as uncomfortable as I thought I would.  But I would be lying if I didn't admit that seeing older people with Parkinson's freaks me the hell out!  I guess I'm in the stage of acceptance of myself and where I am with my PD but I'm not necessarily at the point of accepting where I "might" be down the road.  So when I see someone that's much farther advanced in the disease with very clear impairments in both motor, speech and otherwise it can be a bit scary.  I don't like that I feel that way, after all these are people too.  I don't like the fact that I find myself focused on limbs of individuals almost scoping out how well their body parts are working, what impairments I can notice on perhaps the less severe cases because I know they have it so I'm watching for it.  I'm not proud to say that I do that, but it seems to just be natural to me at this point.  I guess my mind is wanting to prepare myself for changes.  But like I said I don't like that I find myself focusing on those things as opposed to the person in front of me and getting to know who they are.  I guess this is a process and I'll move along on it as I have other ones with time.  So despite those thoughts I went to the meeting this afternoon.  It was as well a small group, smaller than I anticipated but as all of the PD community has been on the Island since I went public with my diagnosis they were very welcoming and kind.  I was made feel comfortable and despite the things that freak me out a bit about those meetings it was a positive experience and I do feel I will continue to take part in such groups.

I then decided that I started my day on a high note after a rather low week and I should end my day the same.  So I picked the girls up and we went on a date out for supper together.  The girls enjoyed pizza and of course ice cream at Boston Pizza and I enjoyed hearing the many stories of Sammy's day at school and all the trials of a 6 year old!  And of course the many hugs and kisses and stories of the bump she got on her head from Izzy!  Oddly enough I forgot to take my meds that I typically take around 5 or 5:30 as we were entering the restaurant and my extremely perceptive 6 year old quickly noticed by the time our meal came, pointing out that Momma's hand was starting to shake bad.  I told her I knew and that was ok, I'd get my medicine when we got back out to the car.  She then promptly told me that she told her friend Lexi on the school bus that her Mom has shaky hands a lot.  She then proceeded to say "I told her you had Parkinson's, but the day I told her I couldn't remember the name right and I told her it was something that starts with Park and makes you shake!"  There's no hiding anything from this smart girl of mine.  But I'm thankful that she now has a better understanding of things than she did before and she doesn't seem sad or upset over the days Momma might shake more or just be having a bad day. 
I guess it's true that children sure can adapt well.  If only us adults could adapt so quickly....

Restaurant selfie of the Momma & her two cuties!

"A friend is someone who lets you have total freedom to be yourself" Jim Morrison

I am blessed to have many people in my life who love & support me.  People who not only give me that freedom to, but want me to be myself!  People who are genuine, kind and love me.  The reality is that we only have one life to live and we should not do it on someone else's terms.  Having Parkinson's has changed who I am in some ways but I think it's mainly reinforced my true self.  Everyone deals with life's obstacles differently and there is no wrong way as long as you are being yourself.  If someone expects you to be someone that you are not, then one has to ask why?  No matter what answers you may come up with at the end of the day they are not true and supportive friends to you.  Because a real friend loves & supports you just the way you are without expectations for you to change. 

The world is blessed with so many personalities and thank God for that, because if we were all the same things would get pretty boring.  There are outgoing people, introverts, those that are often comic relief, the quiet ones that take it all in.  Some people are private and others not so much.  But no matter what every person is unique in their own way and that's what makes them beautiful.  I believe that we should all be allowed to shine in whatever way we are most comfortable and we all have something to offer the world but we can only do so if we are being true to our own self.  I choose to live my life very openly.  I have always been an open book, some people really seem to hate that, which is fine by me because it's not up to them how I live my life. 

We could all learn something from Dr. Seuss, I personally think he's very wise! 

The reality is that if people don't like or appreciate the way you are, it doesn't matter.  If they choose to pick apart or judge others constantly then they must be unhappy with their own lives.  It's nothing that you should even waste a single thought on.  Because people who are kind and genuine and happy in their own skin do not gossip or criticize the way others live their life.  They appreciate everyone's place in this world and they ignore things they may not like rather than tear those things apart.  If you are experiencing a struggle in life of any kind I assure you, it will be a wake up call for the type of person you want to be and the types of people you want to surround yourself with.  Parkinson's has taught me to live in the moment and to surround myself with positive people who are not mean or cruel to others just because they may not be the same personality or opinions.  It has taught me that sometimes people are simply unkind and that is ok because it's their issue to deal with not yours.  It's taught me that most people are loving, caring beautiful people in this world who truly want to live a life of positivity regardless of what is thrown their way.  I am ever so grateful for these lessons and sometimes simple reminders.  I am also very grateful for the beautiful people it has brought back into my life and the new people who I've crossed paths with because of it.  I am grateful for a husband who knows I am an open book, supports that and is happy I'm that personality.  He loves that I am who I am and I am lucky to have him!

I think we all have a purpose in this life and sometimes it goes in an entirely different direction than where we thought it was suppose to.  I genuinely love others and love to help out when someone is in need.  I've taken some flack for that over the years, some judgement on my motives for helping others and even some negative feedback about my blog.  But at the end of the day I know my own truth and I know that I am sincere and I care and I truly want to help others whenever I can because I think that's the way the world should work.  I think it is part of my purpose for being here and it's a way of life I want my children to grow up knowing.

Now that I am dealing with PD I do not think that has changed, however I do think it looks a little different.  I can't often help in a physical way like I might always want to but I can still help others.  Parkinson's is a BIG deal.  It's not getting the flu, or breaking a leg or something that will go away with time.  It is a degenerative disease that will be a life long battle for not only myself but for my family to deal with.  And well, it sucks.  It's scary and it sucks.  BUT I am a firm believer that everything happens for a reason.  And if having YOPD is the card I have been dealt with than it must be for a reason.  I am suppose to do something with this.  When I first started reading up on PD there is very little information out there for the young onset patients.  It is primarily an older person's disease and therefore the majority of information, supports and so on are targeted to that demographic.  I started to write this blog for my own form of therapy as it helped get things off my chest in a positive manner.  When I started to share it which was months later it in turn connected me with other young onset patients, which was fantastic!  I was able to communicate with other people with similar struggles in similar times in their lives and that can be very beneficial.  I also received a tremendous outpouring of support and let me tell you that is a huge weight lifting feeling from this journey.  I was touched by many who said that my writing helped them in their own struggles, some PD related others not and that has been heartwarming.  I was contacted by various organizations on how I might be able to assist other people struggling with Young Onset PD and that was mind blowing to me and incredible at the same time.  How could I help them?  I don't yet know the answer to that.  However one thing I know for sure is that I have this scary degenerative disease for a reason and as time goes on those reasons I think are presenting themselves to me.  I think part of the reason may be that this is to be the new way I can try and help others.  And if one person feels like they are not alone in this journey because of it then it has served it's purpose.  If one other person with Parkinson's that's struggling to maintain their balance reads about equine therapy from this blog and tries it and has success with it, then it has served it's purpose.  If it makes one other young parent with PD feel like their are not alone and that someone else knows what they are going through than it has served it's purpose.

One thing is for certain.  I am an open book, I always have been and I always will be.  I will not change who I am for anyone and I will not let PD change me either.  I will continue to pour out my heart and soul for nobody's purpose other than my own and if it helps someone along the way I think that's fantastic.  And if it doesn't or someone doesn't like it than that's ok too.  Nobody has a gun to their head telling them they have to continue to read it!  Because I write this blog for three reasons:
 
1.  To continue to get things off my chest in a constructive manner
2.  To avoid assumptions by others about my own health, because I am telling it like it is
3.  To perhaps touch or help one other person out there that may be having a similar struggle
(If there were a fourth, it would be to provide the folks that love to gossip something new to talk about!  Ha! Ha!  Your welcome!)

Thankfully because of this blog I have had many positive people become closer friends.  Many people be more true and honest with me about themselves.  Learned more about myself and most importantly I have been touched by the lives of others who are fighting various battles.  One which must be mentioned is Cindy, who as I wrote about previously I had the great pleasure to meet when I was in Calgary.  She is an inspiring, beautiful, courageous woman fighting breast cancer with dignity and strength.  She inspires me to fight harder, to stay positive and to cherish the loved ones in my life.  If you are ever in need of feeling any of those emotions I urge you to read her blog.  It can be found here:  http://warriorcindo.blogspot.ca/





















She is amazing!  I am lucky to have met her and she's more beautiful and more wonderful in person!


My goal in this life is to be a good wife, a loving mother, a kind hearted person that always tries to put others first and help where I am able and most importantly to be ME.  All of those things are what make me happy and when I stop being any one of those things I cannot feel fulfilled in this life because I am not being the person I set out to be and therefore I will live a very unhappy life.  Having Parkinson's Disease changes a lot of things but it does not change any of those things that are important to me as I go through this life, my life.  I urge you that if for any reason you are not being real, not being true to yourself or constantly worrying about what other people think, stop!  Don't let anyone, anything, any disease, any challenge or obstacle this life may throw at you take away who you are or what you believe in.  Because nobody else can love you if you cannot love yourself first. 

"Unless someone like you cares a whole awful lot, nothings going to get better, it's not!" 

 

"Why fit in when you were born to stand out?"

 

"Today you are you, that's truer than true. 

There is no one alive who is youer than you!"

 

"You have brains in your head and feet in your shoes,

you can steer yourself in any direction you choose"

~Dr. Seuss~

'Screw you Parkinson's' cause I just ran my first 5K race!!!

Today was 16 months from when I got sick (although in hindsight years since my first PD symptoms began), 6 months since I first heard the scary words 'Parkinson's Disease', 5 months since I started PD treatment and 1 month to the day from when I was officially diagnosed with Young Onset Parkinson's Disease.... AND...  I just ran my first 5 km race in the PEI Marathon this morning!!!  Not only did I run a 5K but I did it in 36:55 which was 7:05 faster than my goal!  I did it while wearing a custom made shirt by the amazing people at COWS Inc. where I was working before I got sick that said my motto "Screw You Parkinson's"!

 

I can honestly say that aside from my kids being born this was my next greatest accomplishment!  That might sound like I'm making too big of a deal out of it not like I ran a marathon or even a half, but for me, for this body of mine, for the struggles I deal with daily this was HUGE.  I am beyond proud of myself for it.  It was the hardest thing I've ever done and it was by no means easy, but I did it & it was incredible! 

 

I had 3 amazing women run with me today, all of which have been or currently are runners and likely could have done this easier and faster but chose to stick by my side and encourage me to keep going when I thought I was done.  Words would never be able to express just how grateful I am for that, how much it helped me and what it meant to me.  One of my best friends Lorena has been and is by far one of my biggest supporters in more ways than one and one of my biggest cheerleaders too.  She encouraged me to register for this race and had complete faith and confidence in my ability to pull it off even when I doubted myself.  She is amazing and I am so lucky to have her in my life!

 



 She even made sure she had the same shirt made for today to run by my side!

 

There were also two other ladies, Aliceann & Dawn who are dear friends to her and before today acquaintances of mine who chose to run with us.  They did not have to, but they did, wanted to and I am in awe that they were there for me.  This journey of mine keeps giving me so many unexpected surprises and beautiful gifts like this one, gifts I would have never had the pleasure of receiving if it weren't for Parkinson's.  So despite the struggles there are many wonderful things presenting in my life because of it and one has to feel a sense of gratitude for them even if it means I have PD.  In a strange way I'm thankful for it because it's blessed me in many ways already.

 



So grateful for these 3 ladies!

 

 

Today's experience was extremely emotional for me aside from how physically challenging it was.  I was a basket of nerves every time I thought of it this week.  Not because I didn't think I'd finish, I knew I would finish even if it meant walking the entire 5K.  But scary because I didn't know how my body would respond.  After all the 2.5k mark is usually where my body starts to give in.  3.2K was the farthest I'd ever run (at the Parkinson's SuperWalk).  So getting to the 5 kilometer mark was terrifying to me.  I had countless messages leading up to this morning by text, facebook posts, emails from so many people with words of encouragement and support.  Beautiful things said that made me feel special and in awe that so many people had so much confidence in me when I didn't necessarily have it myself.  To all of you that took the time to tell me those things, please know you were a HUGE part of today.  I held onto those words and used them to keep going.  I am so grateful for all the caring cheerleaders I have both near and far and it truly does mean the world to me.   When I woke this morning I felt nervous but was thankful as I had gotten some sleep last night which doesn't always happen.  I was stiff and shaky which I am always worse first thing in the morning until my meds kick in.  I held off as long as I possibly could before taking them because I knew if I didn't they would be wearing off by the time I was due to run, or half way through.  Once it was getting close to 8am I took it knowing my first dose usually takes the longest to work (45 minutes to an hour average).  When I met up with the girls and we got to where the Marathon was starting I thought I was going to puke!  But then about 10 minutes before the start they kicked in and my body started to feel a bit better and the shaking eased.  I suddenly looked around to literally hundreds and hundreds of people with different colored bibs ready to run.  5K, 10K & half marathoners (those people amaze me).  The full marathon runners started at a different location.  Well seeing the crowd was just like everyone said, exhilarating!  So when the time came I was pumped and ready to go!

 

The first couple km's went well.  I tried to do my usual run a km and then walk a minute as I know my body can't do the full amount running.  After the first km I realized I had done it faster than I typically do, no doubt from the excitement of all the runners around me.  But it also worried me a bit that I started too fast.  But I kept on, the girls stopping to walk when I did telling me I was doing great and encouraging me.  By the time I hit 3.5K I was most definitely running out of steam.  I had already gone farther running than I had ever done before and the thought of another 1.5K was terrifying to me.  When 4 hit I had both a sense of excitement that I was almost done but fear because I was now shaking like a mad woman and was struggling.  The girls were wonderful, that last K I had to stop several times for a little walk or I knew I wasn't going to make it.  They kept encouraging me telling me we were ahead of schedule that I was doing great and their words were heartwarming for me and gave me the push I needed.  When we finally hit the corner of University Avenue and took the turn, you could see all the spectators, hear the cheering AND most importantly see the finish line.  Tears started to stream down my face as Lorena said "See it, it's right there".  Then they all said to me "Don't cry yet!!!".  So I shook my head wiped the tears and made myself stop.  Coming into the finish line was a bit of a blurr, I remember looking for Aaron & the girls but at the same time not really seeing anything.  I did catch them right near the finish and apparently there were some other supporters there I didn't even notice.  As I crossed the finish line they put the medal around my neck and I bent over exhausted and excited and in awe all at once.  I did it!  'Screw You Parkinson's, cause I just did it!!!'

 A sea of runners!

Incredible thing to be a part of!

I then was greeted with congratulations by my girls and their signs with kisses from them and my amazing husband who sticks with me no matter what and hugs from my biggest cheerleader since I can remember, my sister!  As well as my friend Donelda & Lorena's parents & kids.  Another huge cheerleader of mine Angie & her sweet girl Abigail where there with a big sign for me too, but in the excitement I didn't see them.  But the whole experience, well, It was Incredible!  Holy crap I just ran 5K in what I knew was faster than my 44 minute goal but still had to wait for the official time and I did it despite my screwed up body!!!  Wooohooooo!!!

 

 

 
 





















As we ventured off into the tent where there were some snacks to refuel, I tried to grab a piece of banana.  Shaking so badly I couldn't unpeel it, so Lorena did it for me.  Then when I went to grab it I couldn't and had to use my left hand.  The poor volunteer behind the table looked at me very concerned and said "Are you ok dear, do you need to sit?" to which I didn't even have time to answer cause Lorena promptly said to her "She's fine, read her shirt"  Ha! Ha!  Took the lady a second and I think another volunteer actually said into her ear 'she has Parkinsons'.  It made me laugh, particularly at Lorena's quick response and pride in what I'd just done!  Another volunteer spotted the tattoo's on my back, the portraits of my girls when they were each 6 months old, took a picture of them and one of my shirt!  It was awesome!  Then the results came in..... Oh the anticipation.... Lorena and I went to the wall to search for our numbers and there was my name.... Natasha McCarthy #4081, Mount Albion..... 36:55!!!  WOW... Lorena gave me a giant and loud high five, then hugged me and said "didn't I tell you, you could do it?" and then I cried, again....

 

So very exciting!  It was by far one of the best days I've ever had.  Not one of the easiest but one of the most rewarding experiences I've ever done.  I am so grateful now that when January of 2014 hit I forced myself to stop feeling sorry for myself and lazing around scared about what was wrong with me and got off my ass and started moving again.  That I was determined to lose that 25 pounds I gained and keep my legs from getting as bad as my upper body, particularly right arm had become.  Since then I have been determined to not get worse.  Since first hearing those words Parkinson's I decided I would do what I needed to do to fight this.  And that's what I've been doing.  I've had to give up a lot of things in order to stay active and continue to be the best Mom I can be to my girls, but it's helping me not get worse.  Since I was officially told I had PD I have vowed that since regular exercise is the ONLY thing in my control to try and slow progression of this disease since there are no treatments yet for it that this is what I have to and will do.  I will not let it get me without a fight and I will not give up.  I will stay strong as long as I possibly can and do what I need to do to slow it from getting worse.  And because of so many supporters and encouragement from friends & family I am able to do this....

 

Today was AWESOME!

"Screw you Parkinson's, cause I just ran my FIRST 5K"!!!