Briefly describe your journey since diagnosis:
My diagnosis in March of 2016 changed my life, and my perspective, forever. I wasn’t sure what was happening until the day I was diagnosed. I was relieved to know what was finally wrong with me, but as a nurse, I was angry, bitter and depressed at first. I know what a thief Parkinson’s can be, but only if you let it. Soon after my diagnosis I read several articles on the benefits of exercise. I started cycling and became introduced to a ride for children’s cancer. I have ridden several other rides since the first and I have found that focusing on others took away the size of Parkinson's in my mind. A friend of mine that has been diagnosed for several years competes in Spartan races, and encouraged me to run in OCR/Mud Runs. I ran my first, called the Delta Dash, on September 30th, 2017. I additionally had the opportunity to participate and volunteer time at the Louisiana Walks for Parkinson’s event where I met many amazing Parkinson's fighters and volunteers.
I started writing a blog right after my diagnosis to encourage others regardless of their struggle. It was there that I coined the phrase “I don’t want to live in a world where I am shaken by Parkinson’s, but instead I want to shake up the world where I live in spite of Parkinson’s.” I also found that there were few resources for Parkinson’s fighters and care partners in my rural area of lower Alabama, and I started the Parkinson's support group Shaking Up LA (Lower Alabama). We intend to partner with the Parkinson’s Association of Alabama and organizations like the Davis Phinney Foundation to provide resources and education about living well each day with Parkinson’s.
How do you live well each day?
Each day, I wake up with the mindset that I will not be defined or beaten by Parkinson’s. That mindset can get a little tough on some days, but I follow my medication regimen, adjust my diet, keep my doctor’s appointments and focus not on my struggles, but on helping or encouraging someone else. I live well by helping others to live well in their tough times, and by taking care of myself physically and mentally. I find what I am blessed with each morning, and I carry that with me throughout my day. Focusing on sharing the message that you can live well with Parkinson's is so important. I strive to be a voice for Parkinson’s and at the end of the day, I hope my greatest accomplishment is helping at least one person gain an insight into Parkinson’s, and encouraging at least one person who is struggling that there are blessings in each day - we just have to find them.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
That it is difficult to maintain relationships like they always have been. If you think relationships (friendships, marriage and children) are difficult on a normal day, add a neurological disorder and watch how quickly the difficulty increases. The one thing I wanted to do was keep it inside and not talk about it or acknowledge it. I was reminded that although I am the one with the diagnosis, I am not the only one in this battle; the people we have relationships with are fighting for the person they care about. Also, be patient. The diagnosis process can be long and tiring, and finding a balance of medication and lifestyle can be a challenge. Educate yourself and always prepare for your doctor visits. Write down your questions and concerns, and always leave with a good understanding of what the plan is moving forward.
John Carmichael's Philosophy
What do you wish everyone living with Parkinson’s knew about living well?
Take it easy, don’t overdo, don’t set your goals too high and don’t push yourself: these are all well-intentioned pieces of advice that are really the misleading untruth of Parkinson’s. Get up, get moving, help others, be active and constantly challenge yourself. There is a huge gap between living with Parkinson’s and living well with Parkinson’s. The difference is honestly made when you will not be defined by, and press on in spite of, Parkinson’s. You may not be able to run a Spartan race, but do whatever it is that you can to fight each day, in your own way, and take control of you! Victories are not measured in the competitions we face against others and beating them; victories are measured in the competition with the person we see looking at us in the mirror each morning.
Share Your Victory
Each month, we spotlight someone from our Parkinson’s community who embodies living well today – what we call Moments of Victory®.
Your story, like John's, could be featured on our blog and Facebook page so others can learn from your experiences and victories.