Ed. Note: This article is a part of an ongoing series of stories from Parkinson’s Warriors from the community.
Parkinson’s made me a better person.
That’s a strange thing to say and believe me it is, but I wholeheartedly believe it to be true. I am in what I still consider my honeymoon phase of my diagnosis, in that, I was just diagnosed on December 19, 2018, at the age of 42. That was the day I heard those three words that change any PWP’s life…”You have Parkinson’s.”. At that point, my brain turned into static as I could see my doctor’s lips moving but all I could really hear after that point was static. My only response was “cool”, yeah only one word that made no sense to what I was being told. In a way it was a relief, the prior seven years had me in and out of doctors’ offices seeing everyone from general doctors, ER room visits, cardiologists, neurologists and even a neurosurgeon for good measure.
During that time going through all the blood tests, MRIs, along with all those specialists coming up with no idea with what was going on. I heard a lot of statements like “I can tell you what you don’t have but not what you do have” as one by one they eliminated potential diagnosis. I would tell my wife that I don’t care what I have, I just want to know what is going on so that we can focus on that and move on to working on getting better. So when the latest neurologist ran her tests and came back with those words I was relieved and yet not prepared in any way to hear it. I walked out of the office that day in a daze with a prescription for carbidopa/levodopa and now an unclear future.
During this period I devoured everything about Parkinson’s I could find online to now figure out what this now exactly means for me. I quickly learned that there is a lot of information out there and it can all be overwhelming. Even though it’s only been a year for me since my diagnosis I have found a few things that have led me to now being in a much better place mentally which helps dealing with the physicality of this disease with a smile. If there are tips or advice that I could provide for anyone who was just diagnosed it would be these things.
It’s Ok to have a bad day(s)
After diagnosis and finally getting treatment with medication, there were days where the medicine made it feel like I was as close to being normal as I had felt in years. This alone was a victory in and of itself. It also had a slight negative effect in that when I would then have an off day or off moment from the meds not working or my body reminding me who was in charge it felt like being put back to square one. As some of us have learned depression being a symptom of this disease would take over and it would begin my stages of grief all over again.
Over the next few months, I had to learn to take a step back and realize that symptoms could roll in like the tides and not stay long. It became easier little by little to let myself be ok with that bad days are going to happen and sometimes they’re just bad hours and they go away with another dose of medication or a nap. By allowing myself to be ok with these moments I am able to laugh it off and say you won this round, but ill be back made it easier and not add to what I was fighting at the moment. Be resilient, be strong, we’ve all fought this disease in our own ways and have only come back stronger so don’t let the bad day ruin your week or even that day.
Exercise Exercise Exercise
This piece of advice given to me by everyone and everything I read has been vital. Exercise is a secret gift when it comes to fighting Parkinson’s. While it won’t cure all the ailments it does slow the progression and who wouldn’t like to do that…and for free no less! Exercise for me and particularly running has helped me stay active which in turn helps keep my mood up, reduced stiffness I experience usually later in the afternoon and improve my mobility overall.
Prior to my diagnosis and even before the kickoff of symptoms I was not one who enjoyed running, it was something that seemed foreign and let’s be honest, painful. However, after being told that exercise could help I turned to running at first as part of my stages of grief. I ran with a lot of anger, mind you I never got that far at first. It didn’t matter, I was determined to get out there and slow this thing down in any way possible. Quickly I realized that after each run my mood was changed and I felt better overall, outside of running aches but those are good aches.
Running became my therapy and medication to be a healthier person and tackle this disease head-on. Five months after I was diagnosed I signed up for a ten-mile race just to prove I could do it. My wife was running a marathon at the same race and we’d run together for 5 of those miles and then id turn off and head back by myself. In the end, I pulled it off and even finished 3rd in my age group. That felt like such an accomplishment that I a few weeks later signed up for a half marathon. I am happy to say that I also finished that race.
Both of those were huge milestones in me wanting to show those around me that I am more than what this disease is and we are not defined by its symptoms. While I am hopeful that I will see a cure in my lifetime, there is not one now but I will gladly fight it on my own terms and hopefully show others that they can as well. This year I have two 20 mile races and another half marathon that I will hopefully complete as well and continue to show other PWPs that we always have so much more to give.
The present is a gift
At the beginning of my story, I made the statement that Parkinson’s made me a better person, which is true for me. I would have never started running and had such huge accomplishments there. I had a feeling that my future was taken away from me but only to a degree, my future has only been changed from what I had thought it was going to be for many years after retirement. Only now instead of just thinking about the future and what that would bring, I enjoy each day for what it is, a gift.
I don’t take days for granted anymore and try and get as much out of them. Yup even those bad days where nothing is going right with medication or my body, I’ll use that as time to catch up on sleep or watch a movie I haven’t seen before. On days I feel good that means I can get in a run or take the dog for a walk, read a book, etc. Most of these things prior I would put off or just let the days go by almost being a spectator in my own life instead of a participant. These types of things have made me appreciate things so much more than I would have in the past which I am thankful for Parkinson’s giving me that one gem.
One other final piece of advice I could pass on is to thank your caregivers and not afraid to ask for help. A lot of them being your doctors are there to help you and succeed, the same for your loved ones. Just letting them know how much you appreciate them for all they do to help you goes a long way. If anyone would like to reach out and talk more about what works for me or just have another ear to listen please feel free to reach out to me. My email is below.
Thanks for reading,
Charles Chastain
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Nick Pernisco is the Parkinson’s Warrior, a person with Parkinson’s who has dedicated his life to helping others with Parkinson’s. Get the Parkinson’s Warrior book here. Join the discussion on Facebook.
