The Diagnosis:
I’ve written this post at least 522 times during a run in my head, but when it’s time to type it I always find something better to do.
Over a year ago on January 13 (shockingly not a Friday!) I went to the Doctor for what I was sure was a pinched nerve in my shoulder and left with orders for a brain MRI, DAT scan, blood tests, a test where I had to collect all my pee for 24 hours in the fridge and take it to the doctor (not making this up!) and the newly acquired info that the doc thought I had Parkinson’s, but wanted to make sure.
In my 40s? I have no family history. I don’t even know what Parkinson’s is! I thought it was a death sentence. The doc instructed me NOT to Google Parkinson’s or join a Facebook group (I didn’t) and promised if it was Parkinson’s there was medication that could help me live well for many years, and might help me run better. That tidbit about possibly helping my run gave me some hope, while I simultaneously freaked out as multiple tests were performed. Our daughter was in Kindergarten at this time and all I could think was NO, NO, NO she is too young! I am too young! Mixed with “I don’t want to be in a wheelchair when she’s in high school!!!” (This was the only thing I knew about Parkinson’s – that people end up in wheelchairs sometimes).
There were so many tests and a lot of waiting. I figured out what exact disease was being tested for and quickly realized many of those do NOT have great life outcomes. I won’t go into all of them, but fairly quickly I learned that of all the many diseases being thrown onto the table, Parkinson’s actually might be the lesser of evils in terms of the ability to live well and for a long time with my family.
Pre-Diagnosis:
Let’s back up to where I was the day I went to see the doctor. In January 2025 I was only 8 months removed from my 6th and final surgery for lymphedema, where over the course of seven years doctors had re-routed the lymph vessels in my leg to drain into the blood vessels. Over this time my running had regressed. This was a problem for me because I LOVE to run. I didn’t want to race anymore or even be competitive, but I wanted to go out and enjoy running. I was frustrated and assumed that the problem with my uneven run stride stemmed from the fact that at one point my left leg had been heavier than my right (due to swelling from lymphedema). I had also been forced to take many 12-week breaks from running after every surgery to allow the lymph vessels to heal.
Two years prior to my “You might have Parkinson’s” doctor visit I’d started PT to help correct issues I was having with my uneven run stride. I went to so many PT appointments. I got really strong. But I wasn’t running better.
I then started to notice that in the pool, my right arm was not pulling any water. And when I tried to place it in the water where I wanted to, it ended up somewhere else. My shoulder was really tight and this is how I came to the assumption that I must have a pinched nerve.
Shock & Recovery:
Turns out Stress makes Parkinson’s symptoms WAY worse. So as you’re being told shocking news that “You have Parkinson’s!” your symptoms dive off a steep cliff and get worse. Much of January – March last year is a blur to me.
My 110 year old grandmother passed away at the end of February and as much as I wanted to fly back to Michigan for her funeral, I just didn’t have it in me.
The scariest part about Parkinson’s (for me) is that every doctor will tell you “It’s a progressive disease and there is no cure.” It’s very doom and gloom in terms of “It will keep progressing.” Once I got over the shock of the diagnosis, got on some dopamine medication, and was mostly living a normal life, I knew the one thing I needed help with was my mental state. I kept waking up at 3am and stressing about my future. The future I had seen myself in where I ran races and marathons in my 70s was being re-written, but I had no idea by what. What was going to happen to me? Was I going to end up in a wheelchair? Is my daughter going to have a Mom that can do things with her? It’s an endless rabbit hole. And NOBODY knows. I figured I should educate myself and started reading up on Parkinson’s, but that also became a problem because Parkinson’s has about 500 symptoms, many of which I will not get. Every case is very different. So I was reading a billion awful symptoms, some of which I will get, and some of which I won’t. What I needed was some living people who had Parkinson’s and had experience that could show me life was going to be ok. I desperately needed to know I was going to be ok.
Thankfully I found a mentor program and reached out. I talked with two ladies who were diagnosed around my same age and each has had Parkinson’s 15-25 years. They are happy, and healthy, and active with very full lives. They are not in wheelchairs. I asked them both for tips on how to stop stressing about my future. And the one who has had Parkinson’s for 25 years told me “I’m living proof because imagine if I had spent the past 25 years freaking out about my future, that would have been a waste of time!” And she was right. She was proof I could do this. It didn’t happen overnight, but I did stop freaking out about the unknown future.
The neurologist told me that the best medication for Parkinson’s is exercise. Good news, I am good at exercise!
So how does Parkinson’s affect me?
Physical:
There are many little things that don’t bother me much at all. Sometimes I make more mistakes when I type. Sometimes brushing my teeth is a bit awkward. When I get cold and shiver my right hand will shake a lot and it’s hard to stop shivering. There are many small things that I know are from the Parkinson’s, but I can push them aside and not let them get to me. The harder ones for me are all related to my ability to do the sports I love. When I went to the doctor I had quit swimming masters and honestly swimming was a disaster. The prescribed dopamine helped with this a lot. And neuroplasticity of the brain is amazing. I basically re-learned how to swim with different techniques that work. For example I started thinking about reaching my arm really far right to the lane line, and it would end up in front of me where I wanted it to. I’ll never be able to swim how I could before Parkinson’s, but I’m able to swim masters with my friends again and that feels like a huge win.
Running was also a disaster when I got diagnosed. I could skip great, but running was very hard. In a normal person with no Parkinson’s, running is something that you don’t have to think “pick up right foot, move it forward, move left foot, etc. etc.” Parkinson’s strips away those automatic movement skills. I’ve spent the entire last year going to Neuro PT to try to fix my wonky run stride and re-learn how to run. I’m certain most people would have long ago tossed in the towel on running completely, but I love it so much I just can’t. I currently have two major problems when trying to run. The first is that in the early miles I often get foot dystonia, which is where my foot cramps up and turns in toward the left and I just can’t run because my foot is stiff and crooked. It’s kind of like the foot has a massive cramp in it. I have to stop and stretch out my foot and calf and try to get it to relax before I can attempt to run again. Whereupon it often just seizes up again. I can do jumping jacks all day or hop, but as soon as I try to run forward, the foot will seize up. Some days this doesn’t happen at all, other days it happens for 1-4 miles before I can get the foot to relax. Once it goes away on that run thankfully it does not return. But sometimes I spend what feels like the entire frustrating run trying to get the foot to relax. The other biggest problem with my run is that my right leg can’t keep up with the left. The signal from my brain doesn’t reach the leg in time. So for months I was basically galloping and developed some bad habits. Through neuro PT we have corrected most of those. We also addressed the issue where I kept tripping on runs because I couldn’t pick up my right foot enough. I have made progress and although everything I do is a run / walk and sometimes my right leg is merely being dragged along on the ride, I am happy to still be outside attempting my version of running.
The best advice I ever read regarding Parkinson’s (but could be applicable for anyone) was “Focus on what you can do, not what you can’t.” It is so helpful. There are so many days where running is so hard and I am angry, sad, mad, etc. about this problem. I often wonder “How did I end up here?!” But if I can focus on the fact that I am outside or I can hear the owl hoooo-ing at me, or enjoy the sunrise, or appreciate that I am able to swim (even though I’m so slow!), or that I have an amazing daughter to play with, and a husband who is incredibly supportive of this crap diagnosis, I usually feel better.
Mental:
The mental mind shift of all of this is insane. The appreciation I have for my family and very close friends and how much closer we got over the past year has increased ten-fold. Many little things with my daughter became so much more special –I realized it could have all been stripped from me and the fact that I am here and able to participate in all of it is not lost on me. So yes, we took the trips, we remodeled the house, I am doing it all because today I can.
Parkinson’s and the way it presents itself (constantly changing, hard to figure out, frustrating) can be a complete mind-fuck. Any small new symptom can quickly lead my mind to freak out and spiral into “OMG it’s progressing and this is going to become my new normal and I am NOT ok with this!” But at the same time I’ve learned to quiet that voice and know I’m strong enough and smart enough to figure it out. And focus on the good that is in today. Not the questions of tomorrow and the unknowns, but what is in front of me today.
What I Need:
So why share this at all? I’ve struggled with whether or not to share this. I don’t love that it’s great gossip material. I don’t want people to feel sorry for me. I’ve had plenty of my own pity parties and I don’t want other people to pity me. I do however want all the empathy. So much of this is SO. FUCKING. HARD. Having that recognized is difficult when you don’t share it with anyone. And I could definitely use some “You’ve Got This!” in my life. I don’t want people to look at me differently. When I’m out and about day to day nobody would guess I have Parkinson’s and I love that because it makes me feel “normal.” I am scared that after sharing this people will treat me different. But I also feel good when people who already know ask me questions about how I’m doing or what it’s like. Sharing helps me feel less isolated. I am still strong, and smart, and capable, but I also now have to admit that certain things are much more difficult. I am embarrassed to have a disability. Sometimes when I’m out running people will stop and ask “Are you ok? It looks like you’re limping!” It has always made me feel like I must look like some freak while trying to run, even though I know they probably think I went out for a long run and injured myself and might need a ride home. They are being kind and I appreciate that.
I chose to share this because I have always greatly appreciated real people. I want to be real. And if somewhere along the way I can help someone else with similar issues that would be amazing. Or if any of you know someone with Parkinson’s who is kicking ass at life and could help me out, or is a runner with Parkinson’s by all means put us in touch. Community isn’t built by hiding behind a wall.
In my mind I’d like to think as I journey down this new path that I will be able to share more of the trials and triumphs and help others, or maybe inspire someone to keep at it with their own problems, because life is hard in so many ways for all of us and we typically don’t know most people’s struggles. I’m not sure yet how much sharing I’ll be good at because I’m still wrapping my head around my new life reality. What I do know is that I am trying to appreciate so much more of the good, while sifting out the not-so-great. Kind words always help me and I know they help others – so be kind!
The photos in this post are some of my very favorite memories in what was a very difficult year, but also an amazing year.
Thanks for the love and support.
Charisa
