“He who is not courageous enough to take risks will accomplish nothing in life” ~ Muhammad Ali
I think quoting the great Muhammad Ali is appropriate in a post about not giving up and pushing yourself as hard as you can. The world was saddened when this man left us, and the Parkinson’s community of course felt the blow like an opponent to his punch. He was an advocate, inspiration and a fighter both in the ring and when it came to Parkinson’s.
I find great inspiration in fellow Parkie’s that refuse to give up and fight in ways that most people who aren’t living in broken bodies would never think of. Like Alison Toepperwein, a woman the same age as I am, single Mum and not only living with Young Onset PD but literally kicking its’ ass! She works out like a mad woman, she tosses herself in the air with rings grabbing onto the next pin, does chin ups like a champ, climb’s stairs with her hands from the wrong side of the steps and a bunch of other insane things I cannot even fathom trying. Why you ask? Well because she’s a fighter and she refuses to let PD take any more of her than it already has. She recently trained and got herself a spot on America’s Ninja Warrior and her story before she ever got on the show is incredible, she’s one of my new Parkie Mom Hero’s without a doubt. Although when she actually hit the obstacle course she did not finish she’s still a rockstar and although I have never met her in person I am incredibly proud of her, inspired by her and in total awe.
I’ve always talked about how exercise for me is done through ‘fear based motivation’, seeing people more advanced than myself, reading about what can happen as time goes on with this degenerative neurological disease motivates me to do the only proven thing to slow progression… exercise. And when I do and I feel better, and my body cooperates more it motivates me to try and get other Parkie’s moving too. Now I do not claim to be even remotely anywhere in the ballpark as Muhammad Ali or Alison Toepperwein, but I do know one thing for sure. I too am a fighter. I too am determined. I too work as hard as I can. I too refuse to give up… And when you see people fighting as hard as they can despite their disease/obstacle, then really what excuse do I have?
I finally caved after a year of fighting it and added another medication (Mirapex) to my current levodopa cocktail. The thoughts of being 38, on treatment for less than two years and already needing a second drug were horrifying to me. However with painful Dystonia (neurological movement disorder that causes muscle twisting which people with YOPD often get) making it nearly impossible to exercise because just standing was excruciating combined with my levodopa wearing off in 2 short hours I just had to finally take my movement disorder’s neurologists advice. As usual he was right and I should have done it sooner, but sometimes I just need to find my own way in my own time, this disease is still relatively new to me after all. With significant improvements however it was time for bootcamp again. I’ve gone to a place called 3rd degree training for several years now on and off since having my second daughter. Since getting diagnosed with PD I have done portions of an 8 week round here and there but it’s been very hard and I never pulled off more than 3 classes in a week. I decided however that this time was going to be different. No excuses not even Parkinson’s Disease. I was doing this and I was going to work hard even when it felt nearly impossible. I would modify what I had to (the team there are wonderful to help me with this) and I would keep moving even during the moves the rest of the class were on that my wonky body couldn’t do.
Well, I’m proud to say that I just completed that eight week bootcamp. I combined bootcamp with a weight circuit class there once or twice a week and I worked out at 3rd degree six times a week for the first six weeks and five times a week for the last two because my hubby was away and that’s all I could get to being alone with the kids. I modified A LOT of things especially in the beginning weeks, the Dystonia in my legs acted up horribly during class particularly in the later weeks requiring me to go for physiotherapy, massage therapy & acupuncture treatments each week in order to get enough relief from the pain in my legs to keep working. I showed up with weird braces on my ankles, my legs taped up with sports tape and looking ridiculous a lot of times but I showed up. I had tears during a couple of classes from frustration of how hard some things are for this body and I even bawled and cried the entire way home from a morning class around week four. Not because it was a bad workout or painful but because I was flooded with emotions. I had many sweet kind bootcampers tell me how great I was doing and that when they think they can’t do it they see me and figure they have no excuses, they are all beyond supportive and kind. However on that day I didn’t want to be anyone’s motivation, I just wanted a normal body that could go do all the same things the rest of the class was doing. So it didn’t come without it’s challenges or meltdowns on occassion but that’s ok.
I don’t tend to shake much, my main issues are stiffness, being hunched over like the hunchback of notre dame when my meds aren’t kicked in & the pain from Dystonia. However when I work out and get using the muscles on my right side I shake quite badly. But, by the time week 8 hit, I barely shook during a class. I would still during balance moves, for some reason balancing brings it out, and if I did a lot of upper arm stuff, planks etc… I had people comment to me that I wasn’t shaking, or that I only started to shake at the end of class. I got strong, I could do a tricep hold from my toes where as at the beginning I could barely pull one off from my knees. I could hold a plank even when shaking for a really long time. I found muscles I thought were lost like my abdominals and although I still can’t see them I know they are there because they burn when doing core work, Ha! Ha! I slept better (insomnia and sleep issues are a huge problem for people with PD), my anxiety reduced because PD is the gift that keeps giving and anxiety and depression are symptoms. My entire body just worked better. In fact they say that you cannot get better when you have PD, that you can only “slow” progression through exercise, but the reality is… that’s not true, or at least it’s not for me. With adding the extra medication and much to my dismay taking 11 pills a day of three varieties combined with bootcamp I DID get better…I went from a two on the five point PD progression scale (five being worst) down to a ONE… yup, that’s right…Screw You Parkinson’s! I’m in no way cured, if only that were possible, I still can’t use my dominant hand for anything, still can’t hold a pen to write and still am stiff and have lots of challenges through the run of a day and some days I’m crashed but overall I feel better! OH and I am happy to say I lost some inches & toned up, although I do not go anymore for size or appearance, I go to kick some PD’s ass but it’s certainly an added bonus!
The team at 3rd degree training are amazing, they continue to motivate me to not give up and encourage me to get one more push up in. They are kind and caring and best of all they don’t care that I have Parkinson’s they just want me to be the best I can be, and I love that! The people I work out with there encourage me and keep me going. I cannot wait to start the next round, I will continue to go even when I think I can’t do it anymore.
I even got strong enough that I decided to take my own advice and stop saying “can’t” or I “shouldn’t” try that and gave vaulting a try! I take horseback riding lesson’s once a week for therapy (balance, leg strength & posture work) and vaulting is basically gymnastics & working out on a moving horse! I thought there was NO way I could do it so I wouldn’t try. However thanks to my workouts I had enough core and arm strength and I tried it and I LOVED it and cannot wait to try it again!
If Muhammad Ali can fight the way he fought both pre and post PD and inspire people, and Alison can train like a madwoman and be a Parkie on America’s Ninja Warrior and this exhausted, anxious Parkie Mum of two can hit bootcamp or weight circuit six days a week and even try something crazy like vaulting and actually improve my PD symptoms; then what in God’s name are you waiting for? Maybe you’re not able or interested in bootcamp’s or being a Ninja, but that doesn’t mean you can’t get off the couch, set goals for yourself and move. Do not sit there and let Parkinson’s (or anything else for that matter) take control. This is your life, your one and only body you’re going to get and YOU should be the one in charge of it’s destiny. Fight for it, fight to keep it healthy and strong. Refuse to give up no matter how far along you are in progression, there’s always something you can do to fight and to keep moving even if you have to do it all from a seated position. Think outside the box… Do not say “can’t”, say “I’ll try”.
As I’ve stated from the beginning and I think my very first post on this blog….
Parkinson’s you picked the wrong chick to mess with, so bring it on PD, bring it on!
Natasha McCarthy – Follow Natasha’s regular blog here