I’ve never been ordinary. There has always been something unique about me. Maybe it was the fact that I was 13 years old when I learned what it meant to have an autoimmune disease. Or maybe it was when I was 14, I rode a bull at the county fair just to win a $2.00 prize so I could purchase a pair of earrings that I wanted really bad but my parents wouldn’t give me the money for. I blame them for the downfall of my rodeo career, although short-lived.
My life has never been what someone could call “normal” … whatever that means. But on that bright sunny June day when I was born, I was destined to be challenged.
Just look at me
People look at me, and I look good. I am not saying a 9 or a 10, but defiantly a solid 7… what can I say?… I clean up well. It would be difficult to see me in a picture and guess that I had any health issues, let alone Parkinson’s disease. But it’s true. I was diagnosed almost 10 years ago when I was 32 years old.
Now, if you were to spend an afternoon with me, or watched a video of me, you might be able to notice something is off, but still, most people wouldn’t see someone with a degenerative a neurologic disease.
When I first got involved in the Parkinson’s community, I created a program that would help Parkies find a balance between mental and physical health. I would teach fitness classes at the local gym for people with Parkinson’s and their care partners. One day during an exercise class, I was having a difficult day and it showed. At the end of class I was sitting on the floor resting when one of the participants came up to me and said, “I guess you really do have Parkinson’s.”
I was baffled. I could feel the changes in my body, but I guess you could say I wore Parkinson’s well. I, on my worst day, looked better than some on their best day. That’s when I realized that I was portraying an unrealistic view of what a Parkie looks like.
What medications do you take?
Still to this day, I get comments such as, “I want to be on your medication cocktail… what do you take?” It was almost like in the movie “When Harry met Sally” when the lady in the diner says, “I’ll have what she’s having.” But it doesn’t really matter what I am taking because there is not a person in the universe that will take my exact medicine cocktail and getting the same results.
Our bodies are so unique that no two are the same… we’re little snowflakes. The way we absorb medications, how our brain chemicals fluctuate, the foods we eat, the amount of exercise we get, even our distinct genetic makeup…. different. You can see that blending up my medication cocktail and putting an umbrella in it isn’t going to give you the same results.
Stigma of Parkinson’s
Furthermore, I think the stigma that is tied to Parkinson’s doesn’t work in my favor. It’s not uncommon for people to believe that PD can only be an older man who has a tremor… or Michael J. Fox. They don’t automatically consider that a 32-year-old, dashing young lady who doesn’t have a tremor to be diagnosed with the same condition.
I know that I’m not a realistic vision of Parkinson’s disease. But that doesn’t mean that I don’t face the challenges that my fellow Parkies experience. Instead of comparing ourselves to others, let’s just love ourselves for who we are and where we are in life now.
Allison,
I have have had PD for almost 10 years also and the biggest comment I get is “you look good”. The PD drugs were not effective and my doctor suggested DBS. It helped significantly. People said I looked good but its the internal struggle that people don’t see. The numerous side effects of PD.Over the years we tried different things to increase my mobility. A coupe of months ago he he told me there wasn’t any he could do with my restrictions. I was in shock because I now realized it was real and I would go into a depression. But I saw you the doctor’s office and you just came back to work and you inspired me. I said what am doing I an not giving up. I joined a Planet Fitness, played golf, and have a positive outlook thanks to you.
Tom,
I couldn’t imagine being told that there is anything that you could do to help your restrictions. But you’re doing it. Not giving up. Keep up the exercise and a positive attitude… that will take you further than any medication can. Thank you for your comment!
Hey! Nice chicken. Rhode Island Red?
My WWP Mary and I just love your blog! We discovered you online somewhere in 2014 when we got serious about researching PD. We got a mixed breed dog, IVY, who must be walked daily (or she gets moody and mopes). Mary feels better after the walks or laps inside Walmart. I am a cardiac arrest survivor (first attacks kill 90% so I feel lucky) and my cardiologist recommends those dog walks.
Your writing is infectious! After a new blog we can say LOOKOUT to that evil disease, cuz we are one loving couple that won’t be broken (maybe strained) but never broken.
We are getting to a point where timings of doses are becoming noticeable. Alarms on our fons pretty much keep us on track and energized
Thanks for all you do for us. We are grateful. Cheers!
Sam and Mary
Sam and Mary,
I am happy to hear that you enjoy my blog. And keep up those walks with Ivy, don’t want her to become moody… dogs, you gotta love em! Thank you for your kind message… it brightened my day!
I thought about you (not in a creepy going to send you letters with cut up magazines kind of way) and this post earlier at lunch. Some of your posts make you sound like Beast locked up in his castle, but this one makes you sound like a mostly “normal” looking and functional person. It got me thinking how contradicting this disease is. You can say you’re one thing one day or even hour, and the next day or hour you’re something completely different. What’s important is those around us. You can call yourself a solid 7, but be with someone who makes you feel like a 10, or you can be a 10 (cough like me) and be with someone who makes you feel like a 2. That’s it, I’m off to find candy…Have a great weekend!
John, your comment got me thinking. It doesn’t matter if you look like a 10 if your with someone who makes you feel like a 2… great line. Just like Robin Williams quote,
“I used to think the worst thing in life is to end up all alone. It’s not. The worst thing in life is to end up with people who make you feel all alone.”
Oh, and thanks for not being creepy.
That is a great quote…almost as good as mine. 😝 Seriously though, it has me thinking…especially lately. Hmm…
I try not to be creepy to the best salmon chef on the west coast. 😉
non-motor symptoms very seldom are evident to those who see us Parkies at brief passings. I hear “you don’t look like you have Parkinsons enough to baffle me – to which I say I work at reducing the symptoms – and tremor occasionally when stressed. It’s such that sometimes the PD has left me entirely – then symptoms come roaring back again when least expected. Accept it, believe, be unique and proud of it
Roger,
Good advice! Thanks for the comment!
How long does it take for you to do a 50 yard dash? Parkies may be more vulnerable to earthquakes. Keep up the exercises, you’re doing great.
Thanks Dad!
Looking good Princess Parkie..definitely a 10 on the inside and the outside…:)…thanks for sharing your info on the meds and the perfect example of little snowflakes:)
Thank you Al!
Hi Allison. I would definitely disagree about your saying you are a 7. You are definitely a 10 in my eyes. Very glad to have you back in your blog. I hope you are doing much better and hopefully no more surgeries this year
Chris, thank you for your kind words. So far, I’m doing my best to stay out of the hospital!
With or without Parkinson’s you would have been a little different, and are now, but all for the good!
There are those who strive to be different, and those who make a difference, being different. You are the later.
Awwww, Pete! That should be a greeting card.
Great post. Here’s to being unrealistic and positive in our journey!
Dan, unrealistically positive! Ha!
Just as you said PARKINSONS looks different on everyone ….I was 55 when diagnosed and my doctor was more shocked than anyone. I to am teaching boxing to fellow Parky’s and enjoying it. I enjoy reading your blogs , thank you for sharing.😊
Val, thank you for your comment!
I hear you! I too am an unrealistic presentation. I have been a fitness addict my whole life, so the beginnings of Parkinson’s were very subtle to everyone else but not to me. I know my proprioreceptive self. As I have progressed, on a good day, I was told I “barely look sick”. I continue to run (slower and more like a zombie shuffle) so people think everything is fine. They don’t see how hard I’m fighting everyday to just walk quasi normally and not barf because the meds make me ill.
the best support I’ve received is from others with chronic illness like my friend with MS and the other with fibromyalgia. They understand what it’s like to APPEAR well but feel awful. But we keep on! we do it because it’s an adventure and we are still on the right side of the grass!
Sandra,
I couldn’t have said it better! Keep on!
Beautifully written!
You are creating a your own brand….of Parkinson’s! I like the way you are doing it. YOU have done what I want to do, but I just have not done and have procrastinated so long … blog and share what its like to have Parkinson’s done your way.
OF course, now we are adding some famous newcomers to our mix: Linda Ronstadt, Alan Alda…and of course, Neil Diamond…..nope, he is not bringing us flowers anymore. And I cant smell them anyway because that is one sign of Parkinson’s that I have. I can barely smell my food burning.
I am almost 14 years into this! I am doing well….and honestly, I still am in denial
Keep up what you are doing…I like how you just share it all….I have tried to hide behind it and say “I am doing great all the time.” Will continue to follow you!!
Thank you, Rochelle! I’m happy to hear that you enjoy my blog.