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

 

 

 

 



What happens when your give a damn, doesn't give a damn?

Alrighty... I tend to talk about the physical effects of Parkinsons a lot, but not that often about the emotional, cognitive or behavioral stuff.  I think mostly because those are the ones I almost prefer to pretend don't exist.

Let's start with Apathy... Hmmm a word that I don't think I ever used before life with PD... For those of you unsure of it here's the definition:
1.  absence or suppression of passion, emotion, or excitement.

2.  lack of interest in or concern for things that others find moving or exciting.

 

I have always been a go getter type.  Focused and ready for a challenge.  I worked hard to overcome any obstacle in life and particularly my career.  I even remember applying for my first Sales & Marketing Management position and being told "there's no way you'll get that job, you're not old enough" and to that my 22 year old self said "watch me".  And yes, I landed that job, and many other great advancements after.  The word can't wasn't in my vocabulary, but the words motivation and determination most certainly were.  Now things have changed a bit and I guess the first part is admittance, so here goes... 

My name is Natasha and my give a damn doesn't give a damn much anymore.  I am the biggest procrastinator in the world now because I can't seem to get focused on a task at hand.  Sometimes even with things I'm extremely passionate about I simply can't get started, don't want to and lack the motivation to get at it.  I remember my movement disorder neurologist asking at one of my appointments that my husband came to if I had lost my motivation.  I had even asked my husband that previously when reading about this stuff and he told me that I did not have the 'spunk' I once had. :-( sigh.... I knew it, but thought maybe it wasn't as bad as it was.  He promptly agreed with my doctor that day that I had indeed changed in that regard. 

 

To back track a bit to my life before Parkinsons...  I was the woman in the 4" stiletto's who stood tall, walked loud and could storm any office building anywhere in the country for any type of meeting and typically achieve the results I set out for.  Confident, outgoing and with a firm handshake.  Now, I have trouble making eye contact with people.  Even people close to me.  I cannot explain it, I notice it ALL the time and I hate it.  Yet despite knowing it I can't seem to change it either.  I'm less confident and much more nervous than ever before and here it goes... since I'm being honest I might as well go all the way, I suffer from anxiety now too.  Lord, I said it... It's mild mind you but I never had an anxious bone in my body before, in fact I didn't really understand what it was like for people when they would talk about having anxiety, now I have a new perspective and empathize. 

 

I have no clue where anxiety came from, where the lack of motivation or interest came from, why I can't make eye contact anymore or why I procrastinate on everything imaginable.  However all those things are my new reality.  I think part of why I'm always on the go despite the fact I suffer with exhaustion and sleep deprivation is my lack of wanting to admit the reality of cognitive and behavioral changes.  I know they are all part of Parkinsons Disease but having a clear cut explanation for it doesn't really explain it well for me none the less.  They are all things that are not my personality that I've known all my life, not typical traits for me and to be frank none of them are things I like about the new me.  But the reality is that although I am still extremely passionate about many things in my life, including my children, husband, fundraising and community involvement to some extent my give a damn got up and left.  I know that's very contradictory to be passionate about things and say that in the same sentence and trust me it baffles me too! 

 

And then there's the voice.  Well I'm thankful that I do not have speech problems like many of my fellow Parkie friends who have a difficult time getting their words out, stuttering etc... I hope & pray that doesn't eventually happen to me.  However there have been drastic changes in my speech none the less.  My voice continues to get softer as time goes on.  My husband and my children continue to always say "what" when I say something to them and consequently tell me they can't understand me because I'm mumbling or talking too softly.  At first I thought they were all nuts, who me?  The loud mouth?  The girl everyone always laughed about because you could always hear me coming?  How could it be possible that they cannot hear me because I'm talking to quietly?  Craziness.  But alas it's true.  I'm extremely conscious of it because I'm reminded of it a million times a day at home by my family.  So when I am in a public setting I actually focus my thoughts on projecting my voice so that people don't have trouble hearing me.  It's just another way that PD has changed who I am, how I act and how I've always been.

 

You see this journey with Parkinsons is quite a ride really.  You figure things out as you go.  New 'symptoms' appear as time goes on and older symptoms or behavioral changes make sense after you get diagnosed.  Throughout the journey you learn to adapt, try new things and continue to research to to move forward with a life you want despite the disease.  There's so much more to PD than shaking, balance issues, stiffness/rigidity and posture problems.  Thankfully most of those issues are treated well with PD meds so when you are "on" your body can work great, even almost like it did before in my case until the "off" time hits and the next dose is ready.  But having your personality change, dealing with cognitive issues, memory issues, apathy and anxiety those are sometimes harder pills to swallow than my little yellow friends I take to survive a regular day.  They are some of the struggles that really bother me by times, particularly when I notice I'm not making eye contact with someone and don't understand why. 

 

So, today's my day where I just put it all out there.  The day I'm fully honest and although I may not understand why Parkinsons does these things, it does and I just have to deal with it.  And admit that despite a Mrs. Mumbles voice and sometimes the lack of much 'get up and go' that I'm still me, I still care, love, hurt and laugh.  I still love a good joke even if I'm the punchline and Parkinsons will never change that! 

LOL sad but true... but thankfully I usually find it again!  ;-)

 

Step outside of your comfort zone!

It's all too easy for us to live a life of "comfort".  When you have a serious health problem or disease we often find comfort in our medical treatments and tend to use a diagnosis to tell ourselves we can't do a bunch of things.  While sometimes that may be true often it's more of an excuse to give up. 

In the last couple months I've stepped out of my comfort zone and it's scary to do so, but totally worth it in the end.  Don't get me wrong I have my days of excuses and negative self talk that 'I can't do that I have PD' but I try and keep that to a minimum and not let it last.  After all I'm not even 38 yet, I have a long life ahead of me and I plan on living it, not wallowing in it.

I just finished an 8 week bootcamp at a place called 3rd Degree training.  I used to do these type of kick ass workouts and by kick ass I mean kicks your ass!  I have continued to exercise regularly since my diagnosis knowing and understanding that it's the only way to slow the progression of Parkinsons.  However I've altered my workouts to running, biking and other such things that are 'easier' given my legs tend to be more cooperative than my arms.  I had essentially convinced myself that I have PD and I can't do those crazy workouts anymore.  Well, the fact of the matter is that's just crap and deep down I knew it.  I had been reading about how people with PD who took up boxing and other vigorous forms of exercise had huge success in slowing their progression and often needing less medication.  I knew the facts but I continued to stay comfortable doing the things that were easier.  After my last appointment where I found out I had Dystonia in my right hand now, (another movement disorder that often people with PD get) I threw myself a big pitty party at how I had busted my ass for the last year to do everything in my power to stay well as long as possible and yet had failed.  I realized after a week of 'giving up' how ridiculous I was being (thankfully) and forced myself to get over it.  So I registered for that bootcamp I used to do before I had PD.  And you know what?  I could do it!  It wasn't as easy as it had once been and certain things made me shake very badly and I struggled with.  But I learned how to adapt & modify some exercises and make it work.  I stepped out of my comfort zone and tried it anyway and it was awesome!  I felt better as each week went on.  I avoided the need of any extra medications and I had more energy.  Don't get me wrong it was still much tougher than it was pre PD and there were days I had to have a rest or nap after.  I also had to pick a class time that would work with my meds being at an optimum "on" time.  Regardless, it was the best decision I could have made because it reminded me that I can still push the boundaries and do more than the easy road. 

Although my intention of doing it had nothing to do with weight loss or chancing the size of my body it was all about managing PD, it was awesome to find out I had lost 13" in that 8 weeks of hard work!

In addition to the physical comfort zone I also stepped out of a couple of mental ones as well.  I was asked to be a guest speaker to a local Rotary group and talk about Parkinsons and my journey with the disease.  I have done a lot of public speaking throughout my career as well as through some charity work I've done.  TV interviews, other various forms of media and to groups and never been overly phased by the experience.  However this was a whole different ball game.  The thoughts of getting up to speak in front of a group whether it be small or large and talk about myself and something so personal was terrifying to me.  It's one thing to sit in the comfort of my home and write this blog and share it for others to read, but to stand at a mic and actually discuss it out loud was completely different.  I reluctantly accepted the invitation and worked on preparing my 'speech' over the course of a couple weeks.  As I've discussed in the past PD has taken my ability to hide negative emotions from me.  I no longer can hide being nervous, stressed or anxious it very much presents itself in a physical way now.  Although my tremors are well controlled and most times unnoticed they are usually in full force during such times.  I prepared as best I could and off I went on the day of.  I was happy that it was a smaller group who were very welcoming and made me feel at ease.  I managed to get through it without tripping, drooling (another wonderful symptom of PD) or knocking anything over.  I even got a few laughs from the jokes I often crack about myself and life with PD which sometimes people don't understand why I'm joking about something so serious.  However I find comfort and therapy in laughter.  And at the end of it I had several people thank me for coming and who seemed to appreciate learning more about PD and hearing about how I deal with it.  So I guess I can say it's another thing marked off the list of firsts.

On another note I have never been a fan of politics.  I sometimes find it amusing but would never have seen myself visiting a local politician for any reason.  However I have joined forces with the Parkinson Society of Canada through their Ambassador program.  This group works to try and move issues forward and change legislations for various items that affect the PD community and beyond.  Things such as Seniors Strategies, Genetic Fairness Legislation and so on.  So I had my first meeting with my local MP, Lawrence MacAulay about these important issues.  I was pleased that my many conference calls with PSC and reading/preparing had worked well.  The conversation was smooth, although we didn't have much time I was able to get all the important issues to the table and was thankful for his receptiveness to the causes.  I would have certainly never believed you had you told me a couple years ago I'd be visiting MP's in an attempt to change political processes and legislation.  But again, I stepped out of that comfort zone and I look forward to working on these issues more in the future until things change.


The point of these three scenario's is that we can live our life being comfortable but sometimes great things happen when we aren't.  Sometimes when we step outside of the box and do something that's terrifying, extremely difficult and totally outside our comfort zone there can be huge benefits and rewards from it.  Not to mention great lessons about ourselves and our abilities.  I realize this more than ever lately and I hope I can always keep it close to mind as time goes on so I continue to try things that I may have otherwise found an excuse not to.  In a sense PD has defined who I am now versus who I was before; however I will not let it rule my life, my choices or consume me with fear of what I cannot accomplish.  It has taken a lot away from me but I refuse to give it anymore than required and thankfully I have been given many wonderful gifts from being forced to travel this road.  It's a journey, sometimes good, sometimes bad, sometimes ugly but it's my journey and I will make it the best road I possibly can by stepping outside the box one foot at a time!

Countdown to Portland!!! World Parkinson Congress, 2016!

If you had a disease what would you think if I told you there was one organization out there dedicated to creating a worldwide dialogue to help expedite the discovery of a cure and best treatment practices for this devastating disease?  What if I told you such organization held an event once every three years that brought together physicians, scientists, nurses, rehabilitation specialists, caregivers and people with Parkinson's disease to one giant conference?  Well you'd probably say that would be nearly impossible and likely doesn't exist.  That of course physicians have conferences all the time, as do nurses and other fields.  Scientists I'm sure also have such conferences and we all know there are conferences aimed at people with diseases, but none that bring all of those areas together.  Well I'm writing to tell you that if you have Parkinson's Disease you are in luck!  Because the World Parkinson Coalition does just that!  It brings all areas from research to people living with the disease from ALL OVER THE WORLD together under one roof for one enormous and incredible conference.

Say what?  Yup, you read it correctly and it's incredibly exciting!  I for one am a huge believer in the fact that you have to be your own health advocate.  That of course we have movement disorder neurologists as well as countless other people on our 'care teams' that are all experts, but nobody is truly an expert in your disease but YOU.  You are the one that lives with it day in and day out.  You are an expert on what treatments work and what don't, how well you cope with certain things, how your disease is progressing etc... Of course we should rely on the expertise of those people who have studied the field and we do but we should constantly be educating ourselves. 

For that reason among countless others I am thrilled at the opportunity to not only be honored with being an official blogging partner of the WPC among 15 other incredible Parkie's around the world but am super pumped about this conference.  September 20th-23rd the Parkinsons World will gather in Portland, Oregon for three amazing days of education.  I know several people that attended the last WPC in Montreal and they were all blown away with what a valuable experience it was and the opportunity to meet & share with each other as fellow Parkie's as well as the experts.  I cannot wait and am anxiously counting down to Portland!

What is also very exciting is yesterday was the launch of the countdown to Portland Podcast series with Dave Iverson & John Palfreman.  These podcasts are going to be jam packed with great guests and amazing information to give a sneak peak at some of the topics and sessions you'll be able to experience at the conference.  The first one is now live and I encourage you to take the time to have a listen!  You can find them at this link:  https://soundcloud.com/world-parkinson-coalition

Their website is packed with information from the past 3 conferences and armed with information about their mission and what they do.  You can also find all of the WPC blogger's links there as well.  http://www.worldpdcoalition.org/?page=BloggingPartners  I cannot wait to meet some of these blogging partners in person.  I have already gotten to know several of them through their blogs.  I'm grateful to them that they chronicle their journeys as well.  We can all learn from each other, laugh with each other and maybe sometimes cry too.  We all share a common bond and that's what's going to make this trip in September of 2016 so wonderful!

So...... I'll see you in Portland!!!

If Parkinson's is the gift that keeps giving, find new ways to wrap it up!

Everyone loves getting a present, especially when it's wrapped up beautifully with pretty bright colours or fancy bows... But what happens when the gift you receive isn't something you asked for, or ever wanted?  Well, you smile and say thank you because it's the thought that counts and you don't want to be rude....

Well, Parkinson's is the gift that just keeps on giving.  Various symptoms hit at different times, some are constant some are not.  Regardless new gifts keep coming.  None of it's symptom gifts are anything you want but you just need to smile and be grateful because things can always be worse.  So instead you find new and unique ways to "wrap it up" to try and make it prettier or work better.  You could throw an all out temper tantrum everytime you get a new gift from PD but really, what good will it do?  It's not magically going to exchange it for you for something else or give you a store credit.  It's non refundable and final sale so you might as well make the best of it.

One thing those of us with PD often do or any other disease or ailment in fact is use it as an excuse to say we "can't".  Well you can.  The only thing we cannot do is let our non refundable circumstance take the joy away from our lives or stop us from doing things we love.  Sure it may be harder or it might take a lot longer to accomplish the same things as before but never give up and say "I can't" without at least trying.  Instead find a new pretty way to wrap it up and get doing it again.  If you loved dancing before, then dance.  If you loved running or cycling or boxing, then do it.  If you loved painting or crafting then do it.  You may be slower, it may be harder, you might find it challenging more on one day than another but if you loved it before then find a way to love it again.  Do not let a disease like Parkinson's or any other steal the joy you used to find in something.  There are going to be things you will have to give up and have absolutely no control over and that sucks, but do not let 'it" steal all of the joy from your life.  Find a way to make it work in a new way.  Your body, mind & spirit will thank you for it and you'll spend a lot less time being angry over the final sale non refundable gift you are stuck with.

I used to love bootcamp and heavy workouts and I've convinced myself over the last year or more that I cannot do it anymore.  I've taken up things like running (although I don't do it well Ha!) and other activities that are 'easier' because those body parts work better.  This is still a good thing, but that doesn't mean you can't try and do the thing you loved before.  Sometimes you need a rotten gift to come to give you the extra push to go out and seek the present you really want.  My last appointment with my movement disorder neurologist and the disheartening news that in just under  a year I had gotten worse and now have dystonia in my hand was my most recent excuse to throw a tantrum about the crap gift I was just given.  I threw myself the best pitty party I could pull together and boy was it a party.  It lasted a full week.  At the end of that week I realized that pitty party or not I was still stuck with the crap gift I never asked for nor wanted and in addition to it I was feeling like an emotional mess and becoming more unhappy by the day.  So at the end of the week I told myself I was being ridiculous.  The gift was non refundable and you're simply going to find a way to use it and wrap it up pretty and find the joy again.  So, I registered for the bootcamp that I had been telling myself for a very long time I "can't" do.  I wrapped up that new present in a pretty pair of sneakers and full of anxiety off I went.  And you know what?  I "could" do it.... It wasn't easy and I couldn't do it as well or as fast or as strong as I once had, but I could do it.  In just one week of 3 rounds of bootcamp I felt more energetic, happier and proud of myself.  I was no longer having a tantrum over the gift I was enjoying the new way it was wrapped up!

When life gives you a gift you never asked for and never wanted simply smile and get a pretty bow and get on with it.  Get out of the cocoon and try.... 

"The way I see it, if you want the rainbow you have to put up with the rain" ~ Dolly Parton

April is nearly over now and it was Parkinson's Awareness Month.  I can honestly say that I am very "aware" of PD!  Ha! Ha!  This month was full of great video's and information shared by various foundations and PD society's and groups and I sincerely hope it helped educate many about this disease and I hope that momentum continues much past this month. 

Only fitting I suppose that I ended it off with a trip to my movement disorder neurologist with my bi annual 700km return trip.  This time I had my husband as a chauffeur which was a welcome change to a very long day of being in primarily one position driving, thankfully I was able to shift around in my seat instead which provided some relief to the stiff drive.  And thankfully I had him to listen to me be irrational and cry and tell me everything's going to be fine on the way home...

So as you can guess by that, my appointment did not go without some upset.  I have been having a lot of trouble with my right hand for quite some time now.  In fact it's one of the main reasons I'm unable to work.  Holding a pen to write and fine motor skills using my dominant hand have been a struggle.  However in the past few months I've noticed it getting much worse.  My fingers curling inward and not wanting to be in any position other than that and the pain that originally was near the base of my pinky & ring finger not only moved its way across my hand to my thumb but also is more frequent.  It's no longer happening just when trying to use the hand, it hurts all the time.  I've read enough and spoke to enough people with PD that I suspected it was Dystonia starting to happen.  Dystonia is a neurological movement disorder you can either get on it's own or as a symptom of Parkinson's Disease.  In PD it can often happen to the hand, arm, neck or foot.  Like many women I like to be right! ;-)  However this is one of the times I wish I wasn't.  But sadly my suspicions were confirmed with a diagnosis of Dystonia in that hand, why must PD have affected the dominant side of my body?  Life would be so much easier if I was either left handed or that was the side primarily affected.  In addition to the dreaded Dystonia of my hand it's clear that after just shy of a year on PD meds that my peak on times are just not cutting it.  Although the meds work well for my stiffness (once the first dose of the day gets into my system) I can often last 4 sometimes even 5 hours where the stiffness is manageable I have not been so lucky with fine motor skills.  I typically only get about 2 hours of peak time for that.  So given the fact that my peak's are not where they should be and there's too much 'off' time combined with Dystonia setting in he wants to add another medication to the mix.  This time a dopamine Agonist that he thinks may help level off my day and improve my 'on' times and could possibly help the pain and twisting of the dystonia if added to my current Levodopa regime.

To say I was happy or excited about this potential would be far from the truth.  I know this is not the end of the world but I am struggling with this new reality.  I bust my ass to try and do everything right.  I exercise (the only proven way to slow progression of Parkinson's Disease), I eat right, I seek and utilize every possible alternative therapy I can find whether it's covered in our insurance plan or not.  I have a 'care team' of doctors, specialists, naturopaths, physiotherapists, massage therapists, acupuncturists and more.  I take a sea of natural supplements to help with my PD and symptoms to avoid taking any more pharmaceuticals than I absolutely have to take.  I spend a small fortune on all these things to try my best to live well with PD.  I work very very hard to be my own health advocate and leave no stone unturned.  And yet, in this moment today it felt as though all that was for nothing.  Here I sit 11 months after treatment started and already I need another medication to manage my PD and have essentially added another disease/ailment to my repertoire.  This is not the way I planned it out in my head when I decided to say "Screw you Parkinsons" and fight this.  Don't get me wrong, I fully understand that I have a progressive degenerative neurological disease and I fully understand that perhaps adding this medication will improve my quality of life yet again like levodopa did and from there on in I will maintain where I am for years to come.  My logical brain understands all of this and that this is not the end of the world.  My emotional brain however is on a completely different track.  I would be lying if I didn't say that oddly enough I was far more upset at this news today than I was when I was told I had Parkinson's Disease.  I know someone out there is reading this thinking "she is nuts, how could this be worse?".  Well I can't really explain it.  It just felt like I worked so hard for the last year to maintain where I was and not get worse but despite all my efforts I did anyway and it feels like I failed.  I know I didn't and I know I couldn't have done anything differently other than do none of what I did and then I would likely be ALOT worse, but I am frustrated. 

So, although it is not something I typically allow myself to do I am choosing to allow myself to suffer.  If you read my last post you'll understand this statement.  "Pain is a reality, suffering is optional"  I choose day in and day out to not suffer, because that is a choice.  And tomorrow I promise to wake up despite my morning 90 year old body, wait for my meds to kick in and dust myself off and get on with it again.  Get back into "Screw You Parkinsons" fight mode and stop feeling sorry for myself.  And I assure you that's just what I will do.  But for now, just tonight I'm going to allow myself to be pissed off and to be upset.  To cry if I want to, cause after all, it's my party.  And I will do it all all while sipping a nice glass of Malbec. 
BUT.... tomorrow IS a new day and I will be fine and there will be joy in the morning's rainbow!

 



"Pain is a reality, suffering is optional"

Today marks a year since I first heard those scary six words.  "I think you have Parkinson's Disease".  I still remember it like a movie in my head, as if I was standing in the corner of the room watching the appointment unfold.  It had already been 9 months at that point of having an uncooperative body and endless tests and appointments with no answers.  I remember the feeling waiting for my name to be called at this neurologists office that I had travelled 350km to see.  I recall the feeling of helplessness and the fear that it would be yet another dead end.  The worry that I'd be in limbo forever with no end in sight to get better.  But most of all I remember the end of that appointment as I sat nervously waiting for yet another experts take on things.  And I remember the feeling as if I had just been kicked in the gut with the breath knocked out of me when he said those six words.  Six words that would have never entered my thought process.  Two words, Parkinson's Disease, that I knew virtually nothing about.  Two words that sounded absolutely terrifying.  Two words that would change my life, our families life forever.  I remember saying "thank you for not saying I'm crazy" being about the only thing I could get out and his reassurance that no I was not that something was very wrong and how he would have me back ASAP to see his colleague a movement disorder neurologist to confirm his suspicions.  Beyond that, I remember desperately trying to hold back tears and being in a fog as I walked out of that appointment all by myself and headed to my car for the 350 km drive home.  A long drive with a lot of time ahead of me to try and process this news.  With that came with some punching of the steering wheel, some anger filled thoughts of 'why me?' and more tears than I had shed in a very long time.

What I could not have known that day in the midst of all the fear and confusion was just how ok everything would be.  How much love & support I would have.  I could not have known I'd have an entire community of amazing people in the PD world that would soon comfort me and touch my life in ways I could never put to words.  What I could not have known was that life with a diagnosis and treatment would be improved more than I could have ever imagined.  That many of my issues would be controlled so well I could get back to living life again.  What I could not have known was that despite the moments of fear that I still have about the future, that wonderful things were still going to present themselves in my life.  What I could not have known that day was that this wasn't the end of the world, nor the end of the road for me;  but simply a new chapter, a new road to travel and a process to figure out what was next.

In 365 days I have become about as much of an expert as possible about PD and a lot has changed.  365 days later I can honestly say that there is just as much good and just as much joy if not more in my life than there was before I heard those six scary words.  I wish I had known that would happen on that fearful day, but I guess that's just not the way life works.

I just returned from a conference in Halifax which was fantastic.  It was put on by the Parkinson's Society Maritime Region and provided a wealth of knowledge and a room with 200 other people who either have PD or help care for someone with PD.  And you know what stood out the most about this room full of people with this disease as I looked around?  For the majority of them, likely about 95% in fact; if you were to walk into that room you would never know they had PD, particularly if you weren't 'looking for signs'.  This was very encouraging to see and experience not to mention comforting to have so many others to share experiences with and understand each other.  A lady by the name of Eleanor Beaton who is a professional women's life coach opened the conference.  She spoke about human nature and the stages you have to go through to deal with a catalytic event in your life.  (Parkinson's diagnosis, divorce, loss etc...) and many things she spoke of touched home with me.  But the thing that struck me the most was when she said "Pain is a reality, suffering is optional".  How human nature is to try and make pain go away faster, it's uncomfortable and it hurts and nobody wants to feel it.  However it's necessary to feel pain from a catalytic event in order to go through a process of reformation and in turn emerge on the other side.  However to suffer is completely optional.  To dwell on the circumstances and allow yourself to be miserable about it is a choice you are making that causes you to suffer.  I cannot agree more.  In the last year I have struggled with the changes forced on my life because of Parkinsons.  However, I also think I've worked really hard to deal with the pain my diagnosis brought, as well as the pain from loss of career, loss of friendship and many other emotional pains on top of the physical ones.  However through that process I have also worked hard at a refusal to allow myself to suffer.  I have made the decision to face my future head on and remain optimistic.  To do what I need to do to live well with PD.  It's not always easy and I still feel the pain at times but suffering won't make anything better.  So it's as simple as that... I choose not to suffer...

So, as this year comes to a close I'm grateful for the opportunities to advocate for PD and to raise awareness that PD is not just for older people.  I'm honored that I was able to be a guest blogger with the Michael J Fox Foundation, share my story of equine therapy with the Canadian Parkinson's Society and connect with other people with PD all over the world through this blog.  And now, I'm onto the next chapter of my new life with Parkinson's.  I am volunteering my time with the executive committee of the PEI Chapter of the PD Society and I have just been elected as a member of the board of directors for the PD Society Maritime Region.  I'm also working with the PD Society of Canada as am Ambassador with their National Advocacy Network.  All things that I can do at my own pace and ability.  My loss of identity I have suffered with from having to give up my career has lessoned.  I now have hope that I will be able to volunteer my past professional experience to have both an impact in the PD community as well as feel like I'm still a contributing member to society despite the fact that I'm unable to work.  This is a very empowering and freeing feeling and I look forward to these opportunities that have presented themselves to me.  Had I chosen to suffer through this experience and like many other people with YOPD remained in the Parkinson's closet, I would not be able to do these things.  Had I chosen to suffer I have no doubt I would be in a very poor emotional state.  So for all these reasons I am grateful and I have found joy in this past year and look forward to finding more as time goes on.

If you have Parkinson's Disease don't be afraid, don't withdraw, seek support.  It might be scary at first but it will have a positive impact on living your life well with PD.  Here are some resources if you're in Canada and particular in the Maritimes.  If you have YOPD there is a monthly video/teleconference that happens which you can participate from the comfort of your home.  You can remain anonymous or come out of the PD closet, which I encourage you to do.  There is valuable information shared and often guest speakers in these monthly calls.  Feel free to contact me if you'd like, don't do it alone there is strength in numbers!

Previous post 'Parkinson's Disease, not just for old people':  http://natashachronicles.blogspot.ca/2015/02/parkinsons-diseasenot-just-for-old.html

Parkinson's Society Maritime Region supports:
http://www.parkinsonmaritimes.ca/inner.php?page=51&sub=76

Parkinson's Society of Canada:
http://www.parkinson.ca/site/c.kgLNIWODKpF/b.3536065/k.6FD8/Living_with_Parkinsons.htm

Michael J Fox Foundation offers webinars, guest bloggers and a wealth of knowledge on a daily basis:
https://www.michaeljfox.org/foundation/news.html

Parkinson's Disease Foundation also has online learning tools & great information:
http://www.pdf.org/en/pd_online_education

And last but not least.  The World Parkinson Coalition has amazing information and ressources.  If you are able to attend the 2016 WPC conference in Portland Oregon I know it's going to be amazing! 
http://www.worldpdcoalition.org/

There are many other avenue's, other bloggers that you can laugh and cry with.  So many opportunities to connect with others.  If you'd like more ideas, other blogger addresses, information or simply someone to chat with please email me through this site. 
You CAN live well with Parkinson's Disease whether you are 37 with small children like myself or much older.

April is Parkinson's Awareness Month.  Donate, spread the word,

find a cure!

 

If you're able, please join my Parkinsons SuperWalk team, create a team of your own or make a much needed pledge.  http://donate.parkinson.ca/site/TR/SuperWalk2015/MR_superwalk?team_id=2774&pg=team&fr_id=1418