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:
Deep Brain Stimulation for PD & Dystonia:
Music Therapy:
Horseback riding:
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