Michael J. Fox, Still, and Me

At first glance, Still, a Michael J. Fox documentary about him was hard for me to watch. I was tempted to turn it off. But, I kept watching anyway. I remember him as Alex P. Keaton of Family Ties and Marty McFly in Back to the Future. He appears vastly different today. Parkinson’s Disease (PD) has been unkind to Michael. He cannot be still even if he wants to. He is constantly in motion uncontrollably. His speech, mannerisms, and walking have been affected by PD. He was diagnosed at age 29 and hid the fact for much of his acting career. Unfortunately, he descended into alcoholism as a result of keeping his condition hidden for so long. Michael is only one year younger than me, making his situation hit me even closer to home.

I was diagnosed with PD in 2020 at age 60. It started about a year before that as an Essential Tremor with Intention. That meant my right hand would shake slightly when I intentionally moved it to eat. But, at rest, my hand was still. When my right hand began moving while I was at rest, I was diagnosed with PD.

I began treatment right away in the form of Rock Steady Boxing. Using boxing gloves and punching bags with a qualified trainer, I sought to stave off the effects of PD in a group setting. When my tremors worsened, my neurologist prescribed Carbidopa-Levodopa (a dopamine replacement drug) and Mirapex (treating restless legs syndrome, which I think I had even before PD). Michael also discusses the medication for his treatment. He likened the effectiveness to coming back to himself again.

I have many fears surrounding my PD. What will it take away from me? It is already affecting my handwriting. I used to receive compliments on it. Now I practice every day using a Super Note digital notebook. If I were to stop writing, I fear I would lose the ability.  With my music, I play bass guitar and percussion. That’s right, give the guy with PD the tambourine and shaker eggs. So far, I have been able to play. I fear my speech will be affected. I have done voice-over work in the entertainment sector and recited my poetry for my blog and podcast. I feel like my speaking has been affected. I notice I slur some words. I already talk in a way that resembles Hunter S. Thompson. He is best known as the pioneer of Gonzo Journalism. Johnny Depp portrayed Hunter in Fear and Loathing in Las Vegas. I am not trying to sound like him or imitate Depp’s rendition of the man. I just insert pauses and inflections the way he does. Or, should I say, he does like I do?

I fear my relationships will change. Especially my relationship with my wife. Will she have to watch me waste away and become a shadow of my former self? Will my children stop visiting because it is too difficult for them to see me this way? Will I continue the hobbies I enjoy? Bicycling, hiking, camping, travel, pickleball, juggling, and frisbee. Will I lose my independence? Everyday activities like getting dressed, making coffee (a morning meditation ritual and art form), walking my basset hound Swede, driving a car, walking, computer use, and phone use. Will my disease progress slowly or quickly? PD affects people at different rates and severity. 

Yet, I remain optimistic. I have had a positive outlook on life even when I had no reason to. The same is true today. So far, my disease has progressed slowly. My wife and family are supportive and encourage me to get help, stay active, and exercise. I am ever grateful for their love and encouragement. Increased research will improve treatment. The Michael J. Fox Foundation for Parkinson’s Research has advanced the cause. I believe they will find a cure. 

I still have a sense of humor. I do not take myself too seriously. I find joy and hope in everyday activities. Michael does too. He has the gift of making people laugh. I hope he never loses that.

What does the future hold for me concerning PD? I do not know. I hope to face whatever comes next with a positive attitude and kindness toward myself and those with me on this journey. Thank you, Michael and Tom, for this chance to share my experience and hope. It has helped lighten the burden I carry with my disease. I hope my story may help someone in a similar situation feel less isolated and encourage them to tell their story. That is what we do at Someone To Tell It To, isn’t it? Creating a brave space where we can be vulnerable and at ease to be ourselves we share our stories and feel less alone in this life. We listen compassionately to everyone’s story because we believe that everyone is Someone and deserves to be heard. 

Timothy E. Wahlstrom,

Someone To Tell It To, Executive Assistant