At 36 years old with two small children I was diagnosed with Young Onset Parkinsons Disease. This is the account of my journey from onset to diagnosis and beyond.
I have two choices. I can sit and feel sorry for myself and get worse fast, or I can dust myself off and fight. I think l will choose the latter!
So bring it on Parkinsons, bring it on!
Do you ever feel like you're on a viscous cycle like that? Stuck in one of those revolving doors where you go from happy, to angry to sad, to mad and it just keeps spinning and you can't seem to get out at the happy exit? I think we all have times like these, times when life just seems to think that when you say to it that things can't get any worse, somehow it thinks that's a challenge! So what is one to do? You can give up but what good's that going to do? Or you can put on the gloves and punch something, get your anger our and face another day!
Now this is a fine line balancing act sometimes when you're living with constant challenges whatever they may be. For us Parkies it can be quite the juggling act some days because we tend to put on a brave face for the world, take our meds and be seen as doing great despite living with a progressive neuro degenerative disease when behind closed doors we have moments where you just hide and cry. Sometimes when you are constantly trying to be strong so you don't worry your kids, your spouse, your family, your friends you break from the burden and feel like your failing. Yes I have those moments, hate admitting it but I do and lately I tend to have the "this isn't fair" thought in my head alot when in reality thinking that way does nothing positive for you, but I allow those moments to happen (for a short time) and then I give myself a kick in the behind and tell myself to get over it, time to fight.
Why am I currently in this revolving door you ask? Well Parkinsons I can deal with, I work out, hard 5/6 times a week, as said a million times before exercise is the only proven way to slow the progression of PD. And through my workouts I keep PD in check, it can be tough but I can manage it. Dystonia however is kicking my ass. Nothing seems to slow it down, it's painful, it's frustrating, it can be debilitating by times. I was woken yesterday abruptly by a severe Dystonia spasm in my left calve muscle. It's only happened 3 other times so far this year and it is horrific. 4:30 am and it hit, the muscle is already twisted up and deformed 90% of the time but when these spasms hit it's like something you've never seen or felt before. It's difficult to put to words but I grabbed the blankets shoved them in my mouth and bit hard in an attempt to not scream in pain at the top of my lungs and wake and scare my 6 & 9 year old girls. It's like the worst charlie horse you've ever gotten times a million that lasts for sometimes days. The initial spasm lasted about 3-4 minutes which feels like an eternity in the moment, you can see the muscle protruding out of my leg like a tennis ball trying to find a way out. The pain is so intense all you can do is writhe around, yet try not to move to make it worse and wait it out to settle. But even when it settles it's not over, the spasms although much milder will continue on for sometimes 2-3 days after. When it settled I got out of bed, unable to put my foot flat as the muscle in my calve wouldn't allow my foot to flatten to the floor, yet flexing your toes aggravates it. Tears flowed down my cheeks as I slowly, painfully made my way to the kitchen. I have to admit when I sat down I cried the ugly cry, part from the pain and part that this is just not fair, why me? Tears of how sometimes it feels like this 40 year old body I live in that's really more like a 97 year olds is just mean and cruel and unfair. Sometimes it's all just hard to accept and a moment like that I think it's warranted to feel that way.
A little over a week ago I traveled to New Brunswick to my Movement Disorder Neurologist and I got botox injections for treatment of Dystonia. It's something I swore I'd never do (never say never) but the pain was getting too hard to bare. I have Dystonia in both my calves and my forearms and hands. I can deal with alot, I've had alot of loss since being diagnosed with PD and I can handle that and have worked to deal with it. However it hit a point where the pain to walk sometimes especially first thing in the morning and as doses of meds wear off is intolerable. Even that I could deal with, I use the cane when needed, I sucked it up and got the wheelchair placard for my truck despite it bothering me to do so, but music is my happy place, my therapy. My garage which we call "Corner Jam" is my music therapy room. When I'm out there I don't think about Parkinsons or Dystonia, I don't worry about what the future holds, I don't stress about the pain, I just get lost in playing an instrument and I feel happy. Playing my fiddle was becoming impossible just holding it was painful and recently I only had about 5 mins in me to play and playing guitar was becoming painful too. For me giving this up is not an option and certainly not something I'm willing to accept without a fight. So I went for botox injections, 16 in total, 4 in each calve muscle and 4 in each forearm. I'm blessed to have some pretty great friends and with my husband being away from work my friend Gail came with me for the 700km return trip. She held my hand while the extremely painful injections went into my twisted up, tight, cement like muscles as I let out a scream and tears flowed from my eyes instantly like someone turned a faucet on. Thankfully although painful it was very quick. I left there with news that its not only stiffness in my hips from PD causing pain but likely arthritis developing in my hips from my limp and imbalanced walk when meds aren't working (really? I got a lemon for a body), and updated prescription for my meds another levodopa added daily because I'm awake too many hours of the day and have too much wearing off time increasing my daily med number to 27 pills a day taken at 9 different times starting at 5am right up until shortly after midnight. I was told the botox would take a week to work and a month to peak, he didn't seem confident it would work for my pain in my foot or that I'd play fiddle pain free, simply said 'maybe' which was disheartening as that was the two main reasons to get it. I'm still hopeful however despite not seeing any improvement in my foot pain I have been able to play the fiddle for about 15 minute intervals without pain which from 2 weeks ago is huge.
I have a friend who's life motto or the thing he always says is "expect the worst, hope for the best". I often tease him that it's a very pessimistic view on life. However I sorta get it, a way to prepare but yet be hopeful I think is where he's going with when he says that. And although life is full of frustrations it seems lately I am hopeful that botox will work, I'm hopeful that I'll soon see the neuro surgeon in hopes of getting DBS (Deep Brain Stimulation) done which will treat both Parkinsons and Dystonia. I'm hopeful that the challenges I've been faced with the last three months. So I shall dust myself off, keep hitting the gym where lifting weights, putting on my boxing gloves and throwing punches and pushing myself to do things that are hard life me up and remind me I am not weak I am strong. I will take the lemons life gave me, grab some salt and tequila and make the best of it. I will fight on and keep battling through whatever challenges come my way because although I have moments I feel otherwise Parkinsons and Dystonia DO NOT have me, I will not let them win. I will keep using my motto to "Never Say Can't, Instead say I'll Try".
Several weeks I attempted to do this and couldn't, I didn't have the upper body strength and I let my mind tell me I can't... but I kept trying because I won't let Parkinson's tell me I "Can't" instead "I'll try" and sometimes that means, trying and trying and trying again...
Today's one of those days where I'm angry. It happens, I'm typically a glass half full kinda gal and I work hard to give myself purpose, focus on the positives & find the joy in each day and 99% of the time that's where I'm at. However we all have our days and sometimes this whole life at 40 living with Parkinsons Disease and Dystonia thing can get to you. I have three loves outside of my kids and husband of course. Horses, playing music and wine... oh and shoes I guess that makes four! Well today I had to cancel my weekly horse back riding lesson (I ride once a week, it works on balance, leg strength and posture and is by far one of my best therapies. Plus horses are good for the soul!). The Dystonia in my calves was too bad today to even think about getting my riding boots on, or using them to push a horse. So I had time to spare so I grabbed my fiddle as Wednesday is lesson day (Music therapy is great for PD) only to be reminded the Dystonia has gotten so bad that just 4/5 minutes of play and the pain in my forearms is so bad I just can't keep playing and if I do I don't play well because I can't concentrate as each additional minute is more and more excruciating. And that's when the anger kicked in, where my mind traveled to the "why me?" place, the "I am sick and tired of busting my ass to take care of myself only to keep having to give up things I love" place. And then the flip flopping started, from angry to crying and back to angry again. So what was the best thing to do, hit up natures antidepressant, kick into high gear with some anger management... you betcha, hit the gym. Nothing gets ones frustrations out like punching a heavy bag, or lifting some weights, or challenging yourself to do one more of something, or lift extra weight, or accomplish something you couldn't before. Anger can be very motivating as can fear. Today's anger resulted in beating my previous weight & bench pressing 125 lbs. Today's anger gave me strength and it will give me the push I need to get the hell over this moment and get back to my positive fighting self.
A portion of all that anger comes from fear obviously. I've maxed out on meds to help the Dystonia, Parkinsons is of course progressing, after-all I went from 4 pills a day 4 years ago to 26 now, in order-to 'appear' the same. However for the most part I continue to work hard to slow it's progression and live well. I work out 5/6 times a week and that is a huge help. Dystonia however appears to have a mind of it's own and is progressing much faster. I finally had to make the decision to get Botox injections for the pain. As it and DBS (Deep brain stimulation) are pretty much the only treatment options left and I'm waiting still to hear if I'm going to be seen as a candidate for surgery or not. In the meantime it's time to try botox despite my reluctance to inject a toxin into my twisted up muscles to essentially temporarily paralyze them; but I refuse to give up playing music especially. That is my escape, my therapy, my happy place and I am not ready to give that up, nor will I ever without a fight. So two days from now I will hit the road for my 700 km return trip to Saint John, NB where my Movement Disorder Neurologist is located and take the plunge on these injections that from what I hear can indeed be very effective. My hope is they work very well, that I can play fiddle and guitar again with less or no pain, that I can maybe use the can less and get these injections for a short period of time. That I'll get approved for DBS and hopefully won't need them anymore. But for now I will just focus on getting them this time and see what happens.
Now on a side note, because I require the cane often 3/4 times a day for short periods of time while meds are worn off among other reasons I had to give in and get a wheelchair parking tag for my truck. I had many people tell me I should get one, to make my life easier on the bad days. But wow did I have a hard time with that one. I really struggled with it, and the need for it. However I did get it and I have used it a couple of times.
And with that being said I write this brief letter below in hopes of educating people to not make assumptions based solely on appearances.
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To the woman in the parking lot at the grocery store yesterday who gave me the look of death, the eye roll, the shaking of her head in disgust as I got out of my Ford F150 Truck with a pair of cute boots with a small heel on them:
I understand your look of disapproval I once would have likely had the same reaction before I understood. You see I have Parkinsons Disease, yes I look too young to have it (thank you) but I do. PD makes me stiff and the stiffness on bad days turns into pain, especially cold days or days the temperature has been fluctuating. Sometimes I shuffle my feet unable to pick them up off the ground easily not to mention a bunch of other issues. I also have Dystonia which is another progressive neurological disease that some people with PD develop. It's when your brain fires messages to muscle groups and tells them to contract. They tense up, twist around tendons and nerves, often bulge out and it is excruciatingly painful. I have this in both my forearms/hands and both my calves. The dystonia in my calves has the muscles twisted up around the nerve on one side causing me to have no feeling on the top part of my right foot. On the left it pulls on the Achilles tendon and causes severe pain in the heel of my foot when I walk. Oddly enough if I wear heels the position it puts my foot in helps ease some of the pain. Standing still in heels however makes the tremor come out in my right leg, however I would rather deal with the tremor by moving around then to deal with the pain in my foot. The heels don't make it go away completely but offers some relief. The big truck you see me driving, well it has steps and a handle. I can step up into it, grab the handle and pull myself into the drivers seat. A car, well, on a bad day or when meds are worn off getting into it is hard, but getting out of it is damn near impossible. Because you have to get out by pulling yourself up I often would need assistance to get out of a car. So driving a car is not easy for me, so a truck or SUV makes more sense and helps me maintain my Independence.
And just a little extra food for thought. I have a couple of friends who have severe Crones Disease. There have been times they've had flare ups where you don't make it to the washroom in time. You're pulled over in the country using the ditch, or you frantically run into a store to try and make it on time. They are given their condition eligible for a tag for parking and for good reason. So when you see someone park, get out of their vehicle and run into the store, maybe just maybe they are trying to avoid soiling themselves.
Or how about my beautiful friend who passed away recently and while battling cancer there were times we met at the spa for some relaxation time. She may have been fighting cancer but she was still a woman that wanted to feel beautiful. So yes she'd do her hair and makeup and yes she was only young, but what you wouldn't have known as you watched her get out of her car in a wheelchair parking spot was that she was fighting for her life, exhausted, in pain and just getting from the car to the door would some days be all the energy she had. But none of that meant she wasn't allowed to look beautiful and her young vibrant self.
So you see, sometimes appearances can be deceiving. I get that when you are not in a situation like these you would never know the need for close up parking. But sometimes what you see isn't reality, and sometimes what you don't see is the pain, the panic, the agony. You think by an appearance a person is abusing a parking spot but yet what you don't know is that I cried hysterically after I got that tag for my windshield. I was devastated that I even needed it. I waited about 6 months too long to even get it because it felt like admitting defeat, or that I could suffer through those moments. What you don't see just by watching me get out of my big truck because you're too busy forming an opinion based on appearance is that it was a very difficult decision to get that tag from my doctor and part of the reason I didn't have one was not wanting the judgement like what you showed yesterday. I get it, I used to think like you, until I had an entirely new perspective and I pray you're never in a situation to have that clarity. So maybe, just maybe the next time you're in the same situation you could think outside the box. And you know what? You can ask... I'd much rather someone ask then give me the look of disgust you gave me. I'd be happy to answer any of your questions and I can assure you that most likely anyone with one of those tags would as well.
Sincerely,
The young Parkie with Dystonia... on behalf of everyone who has a wheelchair parking tag
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And on that note I shall pick myself up, dust off the angry, wipe away the tears and start a new day tomorrow with my fighting spirit back, my glass half full attitude in check, my determined to find the joy in each day self. I shall use all that anger from today to fuel the fight tomorrow and moving forward. Because Parkinsons and Dystonia may be what I have, but they do not have me, I am stronger than they are!
Here are some links of some of the things mentioned here that may be of interest:
Now saying that and meaning it are two different things. We all have those moments in our life where we do something we swore we'd never do, or we worked our butt off at something only to give up before we're finished. Maybe you vowed you would do something and you never got there. However maybe just maybe there's a million reasons for those things, maybe it's a temporary 'stall', maybe the way you're doing something wasn't working so you need a break to figure out a new way.
Lately I've had the overwhelming feeling of "defeat" looming over me. Like a dark cloud that follows me and you can't seem to get rid of it even if the sun is out. Life's been challenging the last couple months and emotionally draining. My 9 year old daughter is suffering from severe anxiety, panic attacks that have lasted up to 4 hours long and seperation anxiety. She's had times like these in the past but never as bad as now. There were days when I couldn't so much as step foot outside the house to run to the garbage can and she'd panic. And when it hits it's always around a worry about Mom and my health. It completely breaks my heart, fills me full of Mom guilt and consumes me with pain. I love that she's sweet and caring and compassionate but I hate that she's scared, worried and feels the need to play nurse to Mom. But we shall get through this as a family and things have already improved since she started (despite her best efforts to refuse) going to therapy. I know with time this will give her the tools she needs to deal with things in a more positive way.
Add to that and a dear sweet friend of mine lost her courageous battle with cancer. She was my go to when it came to things like my daughter struggling. We had countless hours of conversations about Mom guilt and parenting while living with a disease etc... Caitlin was inspiring, a fighter like no other, full of wisdom and beauty and had the most amazing spirit. I miss her terribly but I'm so grateful for the friendship I had with her. She will never be forgotten and her spirit I know will and is with us and here to guide many of us as we continue on this journey of life without her physical presence.
There's been many other bumps in the road the last couple months as well, many things to worry about, sad news, heart ache and stress. And it's funny how all these big things can come at you and you keep fighting through it, standing strong and then the small thing is what can send you over the edge into a complete meltdown. This for me was tooth pain last week. I had a cavity filled, long story short I need a root canal done this week. The pain in my tooth was horific and after multiple attempts to fix it and avoid a root canal or pulling it I lost it. Tears streaming down my face, full of frustration and upset and just ready to throw in the towel on everything. My mind was in poor me state at full throttle. All I could think of is how I fight everyday to stay positive, exercise to slow progression of Parkinson's, smile through the pain of Dystonia and focus on sheer determination that I will not let PD or Dystonia win, that I am stronger than they are... only to have pain in a tooth and what should have been a simply cavity filled take a sledge hammer to all those mindsets I try to live by. Instead of my fight "Screw you Parkinsons" positive attitude I was now in a place of why me? Why can't anything just be simple? Why is everything a challenge? Why do I have to live with excruciating pain from Dystonia when I already have Parkinsons to contend with? Why is my poor sweet daughter suffering emotionally because of me? Why is life so unfair lately? What did I do to deserve all this?
I've said before that sometimes there's power in a good cry and a huge hissy fit. There are times in life they are essential. And yes in those moments I was so angry and frustrated I was momentarily giving up, admitting defeat but like always I got up, gave myself a kick in the ass and said that's enough. Time to move on, get on with it, keep on fighting. And then the next moment of weakness hit. I started the ball rolling on something I swore I would never do, that I'd never hit the point where I would give in to this, I'd never no matter how bad things got do it... I sent an email to my Movement Disorder Neurologist's PD nurse requesting Botox injections in my calves and forearms and possibly hands for Dystonia treatment. A treatment option he's been suggesting for about 2 years. And yes it can be very effective but it's injecting a toxin into your body and with that comes side effects. But, I admitted defeat to the beast of Dystonia. Admitted that the pain is getting too intense, that I hate that it's starting to take my ability to play the fiddle and guitar away because just holding the instruments is painful and that is something I love. Admitted that I hate the fact that I'm now using my cane almost daily even if it's just for 15-20 mins while I wait for meds to kick in. Admitted that for days like that I am going to have to take my beautiful friend Caitlin's advice of getting a wheelchair tag for my truck. Admitted that I can't do alot of things I could do even a year ago. I had to admit defeat and it sucked. And then the wise words of my friend entered my mind that she had encouraged me with so many times. To just accept needing help in certain areas, get the cane for the days you need it, just bling it out and find a way to make it fun. Be open to things that will make my life easier and so on. She always had a way of putting things in perspective and changing a negative into having at least some small positive spin. So it then hit me that admitting defeat isn't failure (or giving up) as long as the goal remains the same. It just means the plan to get there changed.
And my goal is still the same, to never give up, to show my children that you can conquer anything in life that comes your way if you remain focused and determined. To do everything in my power to live well with PD. To help others who are struggling. To be grateful for my blessings and live life to the fullest. So having a meltdown over a tooth, or giving in on getting Botox injections, or investigating the options of having Deep Brain Stimulation done are not me being defeated. It's simply a new plan on how to stay true to my goals in life. If the plan isn't working change the plan but never the goal. So with that in mind I shall dust myself off and get back to my fighting spirit. I will stay focused and accept life's new challenges as they come. I will remain positive and determined like I always have been and show my children that one should never give up and that once in a while admitting defeat is not that, it's a reality and a path to a new type of victory!
And to my friend Caitlin, who was taken from this world far too soon.
Thank you for your friendship, advice, guidance, love and so much more.
The world is a better place because you were in it.
Rest in peace my friend...
Here's a link to a song I wrote about her and how amazing she was:
Today marks my 3 year Anniversary with Parkinson's Disease, of course I've been living with it much longer than that, and I was told I most likely had Parkinson's in April of 2014 (8 months after things got bad and I already had to stop working) and started treatment for it then; but today marks the day that my diagnosis was made "officially official"
So as always out of curiosity I looked to see the traditional gift on a 3 year anniversary. It's leather and this is what it says about it: "The 3rd anniversary is often when a couple is aware of their durability of their relationship, that's why leather is the traditional gift." Hmmm durability? So I looked up the official definition of that which is:
noun: durability
the ability to withstand wear, pressure, or damage.
"the reliability and durability of plastics"
synonyms:
imperishability, durableness,longevity
Now isn't that interesting? I guess I could use that in the sense that if one with PD continues to exercise our bodies will remain more durable for longer? It's a neuro degenerative disease so I suppose our bodies must be able to withstand wear, pressure or damage to some degree. Mentally you most definitely have to withstand those things. So not a big fan of this years "official gift" of the anniversary I looked up the non traditional gift which is crystal or glass. Now this makes me laugh cause I use plastic at home for obvious reasons. Because it really sucks when you drop your glass of wine, but it's worse when you have to clean up glass on top of it! Ha! Ha!
Alright now that the bad jokes are out of the way... As I'm in my 4th year of officially knowing it's Parkinson's I'm living with (and about 3 with Dystonia) it seems in one way like I've had this forever. I say that as I have definitely despite my best efforts of exercising (the only proven way to slow the progression) and doing various traditional and non traditional therapies (music therapy, horse back riding, etc...) it seems I cannot stop the progression. In fact I often wonder how much worse I'd be if I wasn't active. To the outside world looking in when my meds are "on" most people would still never suspect there was anything wrong with me, when they are wearing off however I am now using my cane much more than I ever anticipated so soon. I've had to get over the mental thing where I only use it at home where nobody can see me. I've had to endure the "pitty stares" in public when I limp using it at the grocery store or other public venue. I HATE the pitty stares, I would much rather you simply come right out and ask me "why is it you're using a cane" then stare at me with that "look" as I can tell your wheels are spinning wondering why such a young-ish lady is needing a cane. My dear friend Caitlin helped me get over some of those hurdles which I know in the grand scheme of things a cane is NOT a big deal compared to some people's battles. She told me time and time again if I need it use it, to bling it the hell out and go for it! So I got a blingy cane, red with jewels and a fancy top and it's even monogrammed and says "Screw you Parkinsons & Dystonia" on it! I digress, I must get back on track... Point being it can be frustrating by times when you do everything they tell you to do to slow the progression and yet you continue to get worse in what feels like a very fast way. Now at 3 prescriptions totally 24-26 pills a day (I started with one and 4 pills) in order for me to appear the same to everyone when the meds are working, but now there are sometimes I cannot hide it. That all seems too fast for 3 years. I'm proud to say I've also accomplished alot to help the Parkinson's community in that short time and when I think of all the articles and fundraising, cycling across PEI to raise awareness and fighting for legislation changes with Parkinson Canada's Ambassador network etc... I sometimes wonder how that could all have happened in 3 years. But yet at the same time it feels like just yesterday I sat in that room and was told this was my new life.
I had someone send me a message the other day telling me that my upbeat attitude helped them during a tough time recently and they admired my ability to keep perspective in check. Well I don't think admiration is necessary or warranted but my response was simply that some days are easier than others to be positive but that I tried the 'down in the dumps' thing and it just doesn't help. And it doesn't, it makes it worse. Sometimes a good pitty party is required and that's fine throw a fit, I do but don't let it last too long. Dust yourself off and get up and be grateful. Yes grateful, no matter what your struggle because there's always someone else out there with a load much heavier than yours. Not that this diminishes your situation or struggles in any way it's simply a matter of perspective. I've said all alone since my "D" day that Parkinsons picked the wrong chick to mess with and to "bring it on"! Now I admit it could bring it on a tad slower than it does and there was no need to give me Dystonia too, but that's just life. You have to find a way to take what's thrown at you and find or do something positive with it. Because if you don't you're going to have one long miserable life. After all Parkinson's and I may be starting our 4th year together but that's 3 down and forever to go. Would you rather dust yourself off and fight to live well with PD by your side, or lay down and let it crush you? To me there is no option in those two choices, fighting is the only one.
As I wait to hear word after doing a control test to see if the Neuro surgery team in Halifax will take me as a candidate for Deep Brain Stimulation (DBS) I'm reminded of my former eye rolls and feeling of annoyance every time my med alarm goes off on my phone, 9/10 times a day. However after a bout with the flu in the spring and then doing the DBS control test I've found a new level of gratitude for that med alarm and the pills I put down the hatch. When you get a glimpse into what your life would be like without them you quickly change your perspective to one of gratitude. Thank God for those pills so I don't have to live in such agony everyday.
The long and short of it all is that Parkinson's and obviously Dystonia and I are a threesome that are going to be together for a very very long time. I can try and shove them in the closet but they are always going to come back out and the energy required to have them in there is far too great. So I make the choice to embrace them and try and coincide as best I can. I am my own health advocate, you should be too because nobody knows your body better than you. Experiment with therapies, think outside the box, be open to new things and research, research, research. Because you need to be an expert to live well. A local support group is the best way to start accomplishing this. But most of all keep on going, don't give up.
So, as today marks a milestone I say you to Parkinson's... Happy 3rd Anniversary and here's to many more years together where I will fight you tooth and nail with all I have, so keep bringing it on cause you still chose the wrong chick to mess with. I will fight for myself, for my two beautiful girls, for my husband and I will educate and raise awareness to help fight for others...
I won't be defeated that easily....
Last week I set out on a journey of a lifetime with two Parkie friends and together we achieved something I never expected I would in my wildest dreams without having Parkinson's let alone with. Myself, Dan Steele & Paul Bernard cycled Prince Edward Island's Confederation trail from tip to tip totaling 273 km in 5 days to raise awareness and funds for Parkinson's!
We called ourselves the PEI Pedalling Parkies!
We spent over 20 hours in the saddle, we biked through extreme heat, wind & rain. There were times I honestly did not think I could go on and oddly enough every time that happened I saw a butterfly right in front of me, leading the way. I've written about butterflies before and their significance to me. They symbolize a catalytic moment in life and when a butterfly breaks open it's cocoon to take flight, the harder it's struggle is to get free the stronger it will be in flight and the longer it will live. I do not believe in coincidences and in the moments I thought I couldn't peddle one more turn there was a reason a bright yellow butterfly would appear just ahead of my tire, fluttering forward. A reminder to keep going!
It all came about in a rather funny story. My friend Dan used to be a hardcore cyclist, completing the province wide cycling trip over a dozen times in the past, even doing it once in a day (which I cannot even imagine). He cycled Cape Breton's infamous Cabot Trail multiple times, cycling through mountains and he event spent 7 weeks cycling across CANADA from British Columbia to PEI. And then like many of us Parkinson's Disease took over, fatigue, tremors, slowness, depression, apathy all the typical symptoms most of us Parkies have to deal with consumed life. Dan was diagnosed about 3/4 years prior to me and will turn 50 this year. I met him after my own diagnosis when I started attending the local Parkinson support group. Over the last 3 years I've as Dan calls it 'badgered' him to get active again, after all like I've said so many times it is the only scientifically proven way to slow progression. I would ask him to go for a walk, come to the gym with me, give bootcamp a try or to go biking with me. He always said no, but always seemed grateful I would continue to ask (and likely a bit annoyed I wouldn't stop LOL. Late last year Dan was in the process of finishing working and going on Long Term disability. Something I had already done and as I've written before struggled with. It's a hard thing to give up a career you both loved and worked hard for all your life at such a young age. I still struggle with it by times and it'll be 4 years this summer since I had to stop working. Knowing how difficult it was for me I tried to help with a positive spin on it for Dan. Telling him how there are benefits to not working, like having more energy to be a parent when you aren't exhausted from trying to pull off a days work, being able to take better care of yourself and of course having more energy to exercise and the ability to time meds being at their prime. All very true but even I still struggle believing them sometimes.
Pre Trip Interview with CBC Radio's Island Morning Show
So this is when it happened... I opened my big mouth and Dan called my bluff. I said to him "hell once you're done working you can cycle across Canada again!" to which he gave me a look, laughed and said something to the effect that he'd done little to no exercise the past 6 years and he didn't think that was going to happen. So I continue on with "OK, then, PEI, you can bike across the province again, hell if you do it, I'll do it with you!" Never did the thought cross my mind that after 3 years of hounding him and three years of no's to everything from a walk to a leisurely bike ride did I think this man would say YES to this insane idea. Well, he did just that and I laughed thinking he was joking only to have him the following week start discussing planning the trip with me. Oh dear... what did I just do? Is the only thing that came to mind. I was encouraging him and panicking inside all at the same time in the weeks to follow. To speed things along I knew when January hit this year that despite my fears about cycling 273 in 5 days with a Parkie body and one that was never a cyclist before was worth the effort when he hit the gym and put his bike on a trainer in his home and started faithfully working out. And then the tables changed ever so quickly. I couldn't get myself motivated to get on my bike after a friend lent me a trainer for it. It sat where I would see it, set up and ready to ride on it mocking me from a distance, I had zero interest in getting on that thing, even though I knew I had to. So when I would see Dan typically at least once a week the questions on 'did you exercise this week' became his vocabulary not mine. He was the one hounding me about training for the trip and I was the one saying that I hadn't done it. In the words of Dan "be careful what you wish for"!
All that being said we put it out there that this was something we were going to do. We decided it was a prime opportunity to spread awareness about the disease we both live with and how it's not necessarily that image of the old hunched over man. That young people get the disease as well, and even the seniors that get it don't often appear that way, especially not if their medications work properly. It was an opportunity to dig deep and push the Parkie limits and show not only the disease who's boss but others that they shouldn't give up. And it was a great opportunity to raise money so we can offer more programs, services and things to help people in our province that live with Parkinson's. So we put it out there for others to join and another Parkie friend of ours Paul was the first to sign up, followed by 4 other people who wanted to join us and help support the 'three parkies' on this trip. We had various others register to ride a day or two and tons of volunteers and donors to help make it all happen. We hit some training days together as a group and individually leading up to our June 6th departure and we were as ready as we were going to be.
What I did not know when this all started, was just how difficult it was going to be. Of course I knew it was going to be hard as hell, but I didn't count on how difficult emotionally the trip would be. I had no idea how much I'd laugh even through tears and pain spending 5 days with this two incredible men and the support riders, getting to know each other on much deeper levels. I had no idea just how inspiring they and the experience would be. I had no idea that this insane idea that I never thought he'd say yes to could be life changing, I think for all of us. I had no idea. None whatsoever. And when the day came to head to Tignish on the western tip of the province to start pedalling to the eastern tip I had no idea I was about to embark on one of the hardest but greatest experiences of my life, I couldn't have known as we piled in those vehicles bikes loaded that this trip was going to change lives, particularly my own. That it would inspire so many people to not give up, to never let anyone, or anything including a disease tell you that you can't...
We did five days, the first was relatively easy (I say that with a giggle) from Tignish to O'Leary was 45km and the weather was great for cycling, the trail was relatively easy on that stretch and we finished day one much easier than I thought. We had a great time that evening at the Mill River Experience where the resort donated rooms to us, had a beautiful meal together, a bit of vino to celebrate and we gathered in a room, played some guitar and sang. It was awesome.
Day two we cycled 64km to Summerside, the morning went well it was getting hot but there was a nice breeze and then afternoon hit. My own personal hell at over 30 degrees with too many uphill battles for my liking. This marked the first time I pedalled and cried at the same time as the thought went through my head that I was going to die on that trail! But I didn't, and with the help of our team and even a friend on speaker phone for the last 3km distracting me with conversations about anything OTHER than riding a bike I made it, we all did! That night was more guitar playing, more food and drink and laughs from our bellies like never before. Oh the laughs, it was good for the soul!
Day 3 was from Summerside to Hunter River and 46km. A tough ride with alot of hills, hot and hard, thank heavens there was a long big downhill stretch near the end. That night we were hosted by a beautiful woman, Sheila at her cottage where she cooked a feast for us, and opened her home for some of us to stay.
Day 4, we were thrilled to have my dear friends and fellow Parkies Cari & Peter join us for the final two days of our trip from Nova Scotia. I adore these two people and was so glad they came! We traveled to Morell that day another 64km day. The forecast was bad, heavy rain and wind suppose to hit in the afternoon. So we tried to gear up to leave a bit early, but not before we got some cheers and high fives from an amazing group of grade 1 kids from a nearby school! They met us on the trail, checked out our bikes, asked us questions and then formed a line to cheer "go team go" and give high fives as we cycled by them to start our day. It was a heartwarming sight and I struggled to hold back the tears. We made it to Tracadie before the rain hit, and it remained relatively light until Mount Stewart our stopping point for lunch. By then the rain was hard, the wind was sideways, we were already wet and cold and the idea was tossed around to end for the day and add that 15km to the following and final day and start early. The thoughts of making the last day longer and not sticking to the plan despite the lake in my sneakers and the stiffness in every joint from the rain and cold were not flying with me. I said to the group it was a great idea and go for it if anyone wanted to but I was cycling to Morell that day, Dan then stood up and said with a huge smile "I knew you were going to say that and I'm right behind you"! And with that we were off. It was a wet, cold and very hard trek to our destination that day. 15km seemed like a 100 as we tried to pedal through the wet trail, even flat or downhill portions were hard to pedal on and were extremely draggy. By the time we arrived in Morell my stiff Parkie body needed to be peeled off my bike as I couldn't get off on my own by some great helpers and a shower that night was the best thing I'd ever experienced! We were lucky to have yet another hostess with the most-est Isabel cook us a feast and offer up her home for us!
Day 5, the last day, the final 54km of our trip to Elmira the eastern tip of the Island. The weather was perfect, sunny and hot but a perfect breeze. The scenery especially the first part was spectacular and by far the prettiest we'd seen on our adventure so far. And the hills were never ending, and I mean never ending and the tears flowed multiple times that day as I thought there was no way to go on. But yet again that butterfly appeared guiding me. We pushed through and not one person gave up and the finish line was so close after our final stop 15km shy of the end for lunch we could taste it. (maybe that was just the delicious food Maxine provided for us. We were so spoiled, Jean gave us a lunch feast fit for a king the day before and Florence & Maureen the day prior to that!).
Day 5, departing Morell and arriving in Elmira, the final 54 km's
We had as I mentioned 7 people that cycled (our Parkie three & 4 support cyclists) the entire 5 days from tip to tip. But we had many others join us for a day or two along the way. Shown here is the "Parkie five", myself, Paul, Dan and Cari & Peter who joined is the last two days! During the course of the week we had a total of 20 people join us throughout the week, five of which had Parkinson's, it was incredible! Our final day we crossed the finish line with 15 cyclists and we had a 16th for the first portion of the day! Never did we expect to have so many join us it was wonderful! As we approached the final 2 km of the day with Dan, Paul & myself leading the pack followed by our friends Cari & Peter and then the rest of the support riders we met my amazingly supportive husband and my dear friend Gail who rain 2.5km up the trail to meet us and ran with us to the finish line. My husband I know worried about me all week, when I told him we were doing this trip I could see the worry on his face, but like always he's my biggest supporter and cheerleader and I am so incredibly blessed to have him and so many other amazing people always rooting for me in my corner. We pedalled on and you could start to hear the cheering crowd at the finish, a crowd that blew our minds and overwhelmed us. This trip all came about because of Dan and I wanted him to take the lead and cross the finish first, but in the end our friend Paul was the one who earned the honor. Paul is more progressed than Dan and I and I'd be lying if I didn't admit we were worried about his ability to complete the 273km trip and even encouraged him to take breaks each day and drive with our amazing support vehicle driver Denis who made the trip possible. But Paul wouldn't hear of it, he was riding and made that well known. Paul dug deeper than anyone did, he inspired every single person that cycled over that five day period. He taught all of us that if you put your mind to something it doesn't matter whether the obstacle is Parkinson's or something else you can achieve greatness, you CAN do anything! He finished most days at the front of the pack, he put his heart and his soul into this trip, surprised us all and he is my hero! Words just can't accurately explain how proud I (we all) are of him, words can't express how grateful I am for his spirit and teaching us that nothing is going to stand in his way, teaching us that when faced with adversity you can give up or you can fight on and if you choose the latter you will succeed. He was a rockstar on this trip and nobody deserved or earned finishing first more than he did. Tears streamed down my face as he got faster and faster as the cheers from our supporters at the finish got louder and they still flow as I talk of it or watch the video's of our finish. To Paul, I say thank you from the bottom of my heart for the privilege of cycling with you this week, for the privilege of being your friend and for all you taught us this week! I am in awe of you!
The finish line was a blur to some degree, so very surreal, so incredibly overwhelming and emotional. With each hug I held back tears or they flowed without any control. And as I looked over at Dan, the reason for all this and I reflected on a week of seeing the most giant smile on his face and hearing him laugh harder than I'd ever heard before I knew right then that this week changed all of our lives. There was a spark in Dan's eyes I'd never seen before, he talked about future cycling trips and reminisced about previous ones. He was on fire inside and out and I can't help but be brought to tears at what this insane idea that terrified the hell out of me did for all three of us and I think everyone else that participated throughout the week. One crazy idea brought an entire group together in a bonding experience that I cannot even explain, taught us all things that I don't even know how to properly put to words, showed people that Parkinson's does not need to look like that cartoon image, but rather can be an imagine of strength and courage and determination. It was all so much more than what I could have ever imagined... I had NO idea.... and I'm so grateful at all of his amazing surprises.
Post ride & a rather emotional recap of the trip with CBC Radio's Island Morning Show
Do not ever give up, dig deep & show Parkinson's
or whatever your struggle is who's boss!
You may just exceed all your expectations, crush all your fears
& have a journey of a lifetime!
The 7 of us who completed all 5 days,
all 273km, all 20+ hours in the saddle cycling Tip to Tip!
Three years ago yesterday (after a year and a half of tests, doctors visits & alot of tears) I walked out of my Movement Disorder Neurologists office in Saint John, NB with a prescription in hand for Levodopa/Carbidopa the gold standard treatment for the past 50 years for PD.
Three years ago today I was confused, a little scared but yet relieved to finally be getting answers and torn as to if I wanted the meds to work in turn confirming my diagnosis of Young Onset Parkinson's or not wanting it to.
Three years ago today I picked up the RX & swallowed my first pill of thousands to come and started on the journey of treating YOPD.
Alot has happened in that three years, I was "officially" diagnosed a few months after treatment started, I came to the realization that returning to work was not going to be part of my future which caused me to have a loss of identity, I threw a few really good pitty parties, I met some amazing people that I now call friends and that are like family to me. People I never would have had to the pleasure of knowing had it not been for this fork in the journey. I somehow became a writer of sorts, connecting me with the world for advice and support. I organized events for fellow Parkies in PEI to try and get them thinking outside the box and trying new things like horseback riding, boxing etc... I attended the most amazing health conference you can even imagine, the World Parkinson Congress, in Portland Oregon last fall. The only conference like it where patients, doctors, scientists health professionals and more all together for a common cause. I cannot wait to attend the next in Kyoto, Japan in June of 2019! So much has happened in just 3 years.
And then there's the progression, the often slap in the face to ones positivity, to ones attempt to hit the gym and workout (the only proven way to slow the progression of PD), to ones focus, to ones mind, body & soul. My motto has been Screw You Parkinsons and later Dystonia was added to the end of that line as I've developed it as well. I knew I was progressing, particularly in the last year and despite all my efforts to fight, however in reality I had no idea to what degree. I have been steadily adding new and increasing medications for three years now. As the Dystonia got bad, Pramipexole was added to try and help with that and to lesson the crash from "on" to "off" from levodopa. As mornings became increasingly difficult to get moving double doses of controlled release got added. The time between doses increased with time and so on. I had often wondered when talking with other Parkies who are older than I and have been dealing with the disease often for much longer how it is that I was on so many more meds then them and yet I seemed to be in much better shape, and able to workout at boocamp and do alot of things they couldn't. And then the last weekend in April this year hit and I was given a rude awakening a glimpse 3 years later in what life would be like without my many pills a day (24 currently, 2 prescriptions, 3 types). I got the stomach flu my children had despite all my attempts to disinfect and not get it. I knew the thoughts of not being able to keep meds down were scary but I really had no clue as to how much. I started vomiting on a Friday evening, through the night and into the following morning. I could not keep anything down let alone my medication. I missed a total of 7 pills, a dose of levodopa, a dose of pramipexole and my bedtime controlled release levodopa over the course of 12 hours. By time time 7am rolled around & I finally could stomach taking a pill I manged to roll myself close enough to the edge of the bed to reach the pills off my nightstand and take one. I was so stiff, in an incredible amount of pain from it and all I could do was lay there praying it would kick in soon while tears streamed down my cheeks. About 45 mins later I thought I might be able to get to my feet, for the first time I needed the cane I had bought to keep by my bed that I hoped I'd never use. It felt like a painful eternity to get standing and the hallway from my bedroom to the kitchen felt like 10 football fields long. My tremors were extremely bad, something I don't usually have a huge issue with, my feet were glued to the floor, my body hunched over and it was all I could do to not just keep crying.
I posted a video that morning of my feet trying to maneuver on a Broken Bodys Journey's facebook page you can see it at this link: www.facebook.com/BrokenBodysJourney/videos/1948207135401014/
There was definitely a lesson in that painful morning along with the slap in the face I got as to what my progression had really been like. I have to some degree despite trying to remain positive resented those pills I take everyday. When the many medication alarms would go off on my phone many times during the day I'd still have that Ugh, eye roll kinda moment. Let me tell you, now that I had the glimpse into what life would be like without all those pills I never want to experience it again. I have a new found gratitude for my medication and when the alarm goes off now I am thankful I am able to take it.
So I ventured off to my bi annual 750km return trip to see my movement disorder neurologist last Monday. This time for the first time knowing I needed more meds, as opposed to being in denial or with the mindset I'd fight a med increase again. The Dystonia I have has gotten quite bad particularly in my calves and the pain it causes in the heels of my feet can be excruciating, and I knew PD was getting worse too, especially after the flu experience. This time I had video's to show him the drastic difference of me "on" versus "off". When my meds are on I can do burpee's at the gym with a bosu ball and when they aren't working I need a cane, shuffle and am in agony.
And when I'm off, particularly in the morning this is what it looks like:
And when I'm on this is the drastic difference:
So after viewing the video and over an hour going over changes in old symptoms and new ones that keep appearing with the nurse we discussed yet again another medication increase. As well as trying medical marijuana in oil form to see if it might help me sleep more than my 4 hours a day and possibly with the pain from Dystonia... AND... we discussed Deep Brain Stimulation. Not only did we discuss it, he was eager to send a referral to the team in Halifax right away saying that with the information I'd given and the video's of the drastic difference in on vs off that he was confident I'm a prime candidate for the brain surgery. I always thought DBS was a great option and that I would someday get it done when it came to that, but I honestly thought I would have to fight for it, that the criteria would be so strict it would be hard to get. I was NOT expecting to have progressed fast enough in just 3 short years since starting treatment to be considering this option now. My mind wandered as we left the appointment to "why am I progressing so fast when I bust my ass to do everything the research says I should do to slow it down? Why do I have to have not one but 2 progressive neurological diseases when one should be more than enough for anyone to deal with? Why am I getting worse so fast? Is now the right time to do DBS or should I wait longer? What's going to happen in 10 years when I'm only turning 50 if in my 39th year I'm already this bad? All those questions brought me to tears, and I had a little cry as so many thoughts, questions and emotions flooded me.
So for now, I am doing a pramipexole increase and documenting any changes in the Dystonia pain, wearing off time of levodopa (as it helps level off the crashes). Once that's complete I'm going to try the canabis oil, just the CBD type (the non high stuff) for a couple weeks to see if it helps with the pain and/or increases my sleep. If there is no effect or not enough we'll then attempt a 50/50 combo of the CBD & THC oil. I'll be sure to post about this and my experience and if it helps or not. And while I'm doing all that I've been talking to many fellow Parkies alot of which I had the pleasure of meeting at the WPC about their experience with DBS. I'm grateful that my blog has created such a network of people I can reach out to for guidance and advice and support. So to all of you thank you for that. So far I've yet to find one person who's had DBS that regrets it, in fact when asked they have all said without hesitation yes, they would do it again. In fact most have said the only regret they have is they wished they had gotten in sooner. I special shout out to my friend John Alexander in Florida who took time out of his busy life to have a FaceTime call with myself and my husband where he could tell us all about his DBS procedure which he just had done recently and allowed us to ask him loads of questions. He was in no rush and I greatly appreciate it, so thank you John!
Regardless of all of this, DBS is a big decision. After all it is brain surgery, you are awake for 4-5 hours while they drill a hole in your skull and implant an electrode into a specific part in your brain. It was said by a neurosurgeon while in Portland that it is the most effective treatment for Parkinson's and the most under utilized. Combine that with the great reviews from people who've had it done and all say they'd do it gain, this is very promising. The biggest perk for me is not only will it help PD but it will help Dystonia which is a far greater concern for me right now. The second for me would be the ability to reduce medication drastically avoiding the dreaded Dyskinesia, which scares the crap out of me. The process in Atlantic Canada is about a year long from time of referral to completion of the various tests to ensure you are the right candidate to when you have surgery. So right now its a matter of me deciding not "if" I'm going to proceed with this process but rather "when". It's alot to think about and for now it's tabled until I have a conversation with my doctors nurse in about 6-8 weeks time.
If you haven't heard about Neurologic Music Therapy, you need to! A simple online search will provide some pretty spectacular information and amazing video's of how it's helping countless people with Neurologic conditions and especially people with Parkinson's.
I'll start with how Music has helped me in my journey with PD. Like many of you reading this in fact likely almost all of the Parkies reading this I don't do well in the sleep department. Insomnia and sleep issues in general are a common symptom of PD. I sleep about 125 hours a month. Yes you read that correctly, a MONTH. I average 4 hours of sleep a night, and about once or twice a month I'll get lucky and I'll pull off a 5 or a 6 hour night. However, up until last fall I was only getting about 2 hours of sleep a night, sometimes 3. Functioning on 2 hours sleep is a difficult task. So I started reading a lot and hearing a lot about Music Therapy. So in the fall of last year I made a decision to give up television something I typically sat in front of in the evenings to wind down after the kids went to bed. I started playing guitar again after about a 20+ year break (I was never really that good at it back then, but enjoyed it) I started teaching myself how to play the fiddle, something I always wanted to learn and I turned the garage into a music room which I called "Corner Jam". Much to my surprise in just about a week my 2 hours of sleep started to turn into 4. I get that 4 hours sleep doesn't sound like much but in comparison to 2, that's HUGE. I wondered if it was a coincidence that going to play music in the evenings as opposed to watching TV was why I was getting more sleep, so I played with it a bit. Randomly I'll not hit the garage after the girls go to sleep but will sit on the couch to watch something. On those nights, every single time, my sleep decreases. I asked my movement disorder neurologist and his response was "it's no coincidence, music therapy is huge, keep playing instruments as long as your hands will allow you to!"
My "strings"
Now sleep aside, playing music is also a great thing for memory and cognitive function, can even help with freezing and gait and also anxiety. When I have a guitar in my hand or the fiddle, or whatever instrument I choose in the moment I get lost. All the worries of PD and life slip away and I feel happy, content and at peace. I even started to write songs, thanks to a bit of a reverse psychology push from a friend who's an amazing singer songwriter, Mr. Cam MacMaster, originally from PEI but now a US resident with his lovely wife and daughter living in Nashua, NH. He has encouraged me to write (which is very therapeutic in itself), given me great tips and advice which are much appreciated. Check out some of his music, he's awesome: https://www.youtube.com/playlist?list=FLOi4OqStxCpRNMkAwHdPfDA I've also been blessed with a very talented musician as my best friend Joseph (everyone calls him Joe, but I've always called him Joseph, he teases me that I'm his second mother) and he encourages me daily to keep playing. He also has a recording studio in his house and we've had a bit of fun attempting to record some songs I've written, although I don't seem to record well, intimidating process I suppose. So I'm grateful to these two men, two friends who support me and encourage me to play.
Here is a fantastic quick video that describes the benefits of playing an instrument
I've always been a believer in thinking outside the box when it comes to therapies and treating PD, sometimes the things you would never dream could help can be huge! Try everything, if it's not your thing, or it doesn't help, then move onto something else because we are all different. Find your "thing", Music & Horseback riding are two of my favorite and most beneficial treatments, what are yours?
Here in little PEI we have some great services and programs for people with PD. One of them is a Neurologic Music Therapy class every Thursday that we call "Treble Tremors"! Our Neurological Music Therapist Shonna, helps us maintain our voices & strength, something that is a common issue with the disease among other things and we have alot of fun. I'm pleased that she was willing to do a bit of writing for this post. So I will end with her words!
Hello! My name is Shona Pottinger, and I am a Certified Music Therapist (MTA) working in Charlottetown, PEI. I focus my practice techniques in Neurologic Music Therapy, which led to presenting for the Parkinson Support Group, PEI chapter – this is where I met Natasha. After this, a weekly music therapy group for people who have Parkinsons Disease was started. Read on to discover some VERY interesting information about how music has a unique way to help those with neurological conditions such as Parkinsons.
Quite a bit of research has been going on in the science and neurology world since the 90’s, specifically with regards to our bodies and how they react to sound. It has been discovered that humans are actually wired to react to sound. The motor system – which Parkinsons greatly affects – and sound perception are entwined, so to speak. The basic fight or flight instinct humans have had since day 1 is proof of this. We physically react to sounds in a variety of ways, and our motor system is key. Hang on to this while we discuss another element: entrainment.
Entrainment is a rhythm that our bodies cycles (walking, heart beat/pulse) can be pulled into with a regular pulse or beat. Dancing is a way our bodies entrain to the music we hear. With a steady rhythm or beat our bodies can sync up to that sound while walking. Dopamine levels are not as high as they should be with Parkinsons; this causes a break in the bodies ability to have precise motor movements and speech. By adding sound, the motor neurons increase their rate of firing, which in turn helps to bridge the break and in the end allows the motor system to engage.
Putting these two items together (auditory stimulation in the form of rhythm and entrainment) helps those who are having difficulty in their gait and speech patterns. The rhythm helps to stimulate more firing of the motor neurons which in turn stimulates the motor movements by making up for the lack of dopamine in your system. When a gait pattern evaluation is done by an MTA, a metronome is used to provide a steady pulse. This is what can help with walking. If speech is becoming an issue, a regular schedule of vocal exercises and songs specifically geared towards the issues at hand can help increase volume and tonal quality.
I hope you’ve found this informative as well as interesting. Feel free to contact me (musicforyou@live.com) for more information or any questions you may have. Cheers!
Now this is a fine line balancing act sometimes when you're living with constant challenges whatever they may be. For us Parkies it can be quite the juggling act some days because we tend to put on a brave face for the world, take our meds and be seen as doing great despite living with a progressive neuro degenerative disease when behind closed doors we have moments where you just hide and cry. Sometimes when you are constantly trying to be strong so you don't worry your kids, your spouse, your family, your friends you break from the burden and feel like your failing. Yes I have those moments, hate admitting it but I do and lately I tend to have the "this isn't fair" thought in my head alot when in reality thinking that way does nothing positive for you, but I allow those moments to happen (for a short time) and then I give myself a kick in the behind and tell myself to get over it, time to fight.
A little over a week ago I traveled to New Brunswick to my Movement Disorder Neurologist and I got botox injections for treatment of Dystonia. It's something I swore I'd never do (never say never) but the pain was getting too hard to bare. I have Dystonia in both my calves and my forearms and hands. I can deal with alot, I've had alot of loss since being diagnosed with PD and I can handle that and have worked to deal with it. However it hit a point where the pain to walk sometimes especially first thing in the morning and as doses of meds wear off is intolerable. Even that I could deal with, I use the cane when needed, I sucked it up and got the wheelchair placard for my truck despite it bothering me to do so, but music is my happy place, my therapy. My garage which we call "Corner Jam" is my music therapy room. When I'm out there I don't think about Parkinsons or Dystonia, I don't worry about what the future holds, I don't stress about the pain, I just get lost in playing an instrument and I feel happy. Playing my fiddle was becoming impossible just holding it was painful and recently I only had about 5 mins in me to play and playing guitar was becoming painful too. For me giving this up is not an option and certainly not something I'm willing to accept without a fight. So I went for botox injections, 16 in total, 4 in each calve muscle and 4 in each forearm. I'm blessed to have some pretty great friends and with my husband being away from work my friend Gail came with me for the 700km return trip. She held my hand while the extremely painful injections went into my twisted up, tight, cement like muscles as I let out a scream and tears flowed from my eyes instantly like someone turned a faucet on. Thankfully although painful it was very quick. I left there with news that its not only stiffness in my hips from PD causing pain but likely arthritis developing in my hips from my limp and imbalanced walk when meds aren't working (really? I got a lemon for a body), and updated prescription for my meds another levodopa added daily because I'm awake too many hours of the day and have too much wearing off time increasing my daily med number to 27 pills a day taken at 9 different times starting at 5am right up until shortly after midnight. I was told the botox would take a week to work and a month to peak, he didn't seem confident it would work for my pain in my foot or that I'd play fiddle pain free, simply said 'maybe' which was disheartening as that was the two main reasons to get it. I'm still hopeful however despite not seeing any improvement in my foot pain I have been able to play the fiddle for about 15 minute intervals without pain which from 2 weeks ago is huge.
I have a friend who's life motto or the thing he always says is "expect the worst, hope for the best". I often tease him that it's a very pessimistic view on life. However I sorta get it, a way to prepare but yet be hopeful I think is where he's going with when he says that. And although life is full of frustrations it seems lately I am hopeful that botox will work, I'm hopeful that I'll soon see the neuro surgeon in hopes of getting DBS (Deep Brain Stimulation) done which will treat both Parkinsons and Dystonia. I'm hopeful that the challenges I've been faced with the last three months. So I shall dust myself off, keep hitting the gym where lifting weights, putting on my boxing gloves and throwing punches and pushing myself to do things that are hard life me up and remind me I am not weak I am strong. I will take the lemons life gave me, grab some salt and tequila and make the best of it. I will fight on and keep battling through whatever challenges come my way because although I have moments I feel otherwise Parkinsons and Dystonia DO NOT have me, I will not let them win. I will keep using my motto to "Never Say Can't, Instead say I'll Try".
