I find myself wishing Dad would fight harder against Parkinson’s
Fair or not, I want him to take more steps against his worsening symptoms
My time with my dad is limited by geographical distance: He lives in Michigan while I live in Colorado. When I go home to see him, the Parkinson’s decline seems more obvious to me than it might to those who are with him every day. So when I find myself in his living room, monitoring how he’s changed, I feel a sense of urgency.
His shakes seem worse when I go home. And he speaks less. (Dad has always been a man of few words, but I suspect that his growing speech difficulties have made him even less inclined to join the household chatter.) Watching the ebbs and flows of his Parkinson’s makes me feel that he should try harder. Or that if he just added more routines to the mix, the pace of his degeneration might slow.
Since his diagnosis in 2013, Dad has taken up a number of new habits. He was never much of a gym goer in my early life (maybe having six kids was gym time enough), but the diagnosis encouraged him to change the way he moved. He started boxing and kept up the routine until the pandemic closed down his local Rock Steady Boxing chapter. Then he took a break, hoping to establish a new boxing class.
Today, he still goes to mobility and fitness classes twice a week. I’m proud of the work he’s doing. But sometimes I still feel that it’s not enough.
If I were in charge … and I’m not
If he’s experiencing more difficulty with speech, shouldn’t he try to speak more instead of less? If he’s losing his flexibility, shouldn’t he combat the loss by going to a yoga class in addition to the other classes he takes? Shouldn’t he fight?
I know it’s not fair for me to project my expectations onto my dad. The truth is that he’s probably doing the best he can do. But there’s always this nagging part of me that feels like the amount of willpower my dad exhibits while fighting the disease is proportional to the amount of time I have left with him.
Maybe there’s a correlation. Maybe there’s not.
And ultimately, I don’t think that it’s up to me to determine how my dad should spend the remaining time he has on the planet, even if it means relinquishing added time. All I can do is determine what to do with my own life and the time that I have left.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Maria Boucher
Katie, I am sure your dad is doing what he can for himself and one can only do what we feel it's best for each of us living with the disease. There's so many symptoms that are not visible and that you may not be aware of that he has to deal with before dealing with other visible symptoms.
So wish what you may, what he's doing may be far beyond what he is able to do, so do not wish for more, be grateful that he is doing what he can.
Sharon Spurlin
It is so difficult to watch someone you love on the long slow slope of Parkinsons and all the changes it brings. Each little thing seems so easy to combat, but collectively all these changes begin in the brain, which affects willpower, logic, decision making, and more. I feel your love, and feel your pain, and send you both hugs, prayers and strength.
Doug McConnaughay
Reminds me of the ancient wisdom phrase: “Walk a mile in my moccasins …”. Sounds like (from your description) that he is doing quite a bit. PD takes a huge toll on the patient, and while doing more can help, there is only so much energy to draw from.
pamela j peacock
MY husband died of Parkinsons six years ago and he also took boxing lessons. It was very sad at the end, but he fought as hard as he could.
Donna
I totally understand what you are saying. My husband was diagnosed in 2020 at the age of 65. First year after diagnosed was, of couse, a difficult year dealing with the news, depressiong, etc.; however, he has come a long way since then and is managing pretty well. I, too, wishes he would try harder to do things like exercising (aerobic type), stretching and strength to keep his symptoms at bay for as long as possible and not having to increase medication too quickly. I have to remember he feels things I do not, I only see the outward signs, and I have to trust he is doing the best he can and just be there to encourage and join in on some of the exercises. I was advised at one point to take care of myself (exercise, yoga, etc.) and invite him to join....if he does, he does, if he doesn't to continue to take care of my own health. My husband also does Rock Steady Boxing 3x a week and he really enjoys that and the people he has met....it has been a very positive experience for us.
Tommy Moore
I haven't been moved to respond to any article the way I've been moved to respond to this one. Really, push harder? I was an ultra marathoner before and for a while after my diagnosis. I'd say the first two years, "pushing through" was my mindset. Now, almost 10 years in, getting up and getting dressed is "pushing through." Family events and going out with friends require "pushing through." In no way is the life your dad is living not a form of "pushing through."In no way, does the life your dad is living is not a form of "pushing through".
I know it's hard for others to understand what it takes for us to function, but if he is upright and trying, he is pushing through.
Kiki
The YMCA has good programs for seniors they usually even have a pedaling for Parkinson's class that meets three times a week. It's on stationary bikes with a pedal 45 minutes and there's a instructor does help keep them entertained while they do it so it lets the time pass faster. The study was done with David Finney foundation that the cardiovascular movements helps to produce dopamine, etc. they also have chair yoga, personal training where your one-on-one with the trainer, and other classes that are slower paced basically designed for seniors. There's also speech therapy and I believe it's called Lee Silverman big and loud program that is also done online by zoom. They're based out of Texas but it goes all over the country. Also you can get a prescription from your doctor for physical therapy and speech therapy. These will provide will rounded exercise for for both physical and speech.
Bill Frohberg
Mary Beth,
I know how you feel. My wife Cindy was diagnosed in 2011. We've been to several neurologists, trying all kinds of meds, several did not work due to her Crohn's disease. Many visits with physical therapists, speech therapists. Following those visits, she was very active, but soon her interest or desire waned. She'll no longer go out for dinner due to her tremors, reluctant to visit friends. She tries to keep a positive attitude, but somedays she'll melt down. All you can do is keep showing the love and encouragement. Especially reinforce the fact you are in their corner.
Bastien Atterbury
You have been very honest about your feelings. Sharing this with the large community of this online platform is very brave. I can understand how you want to shake your fists at the sky and shout ' don't give up! Let's DO something!'
I can share that my own experience - almost 20 years now- has taught me the importance of letting go what I can't do so I have energy and enthusiasm for what I can do. For me it's about trying to celebrate the day as best I can.
I haven't followed your writing so I don't know about your Dad's social support groups , his pals, neighbors, family. These are the people to show up now and help celebrate the day with your Dad. Let's make this day fun and easy - everyone can enjoy - that's my hope for you and your Dad
Jen
Hi Mary Beth - have you read up on over the counter B1? It has really helped my husband with his PD. Look up Daphne Bryan and The B1 Therapy on YouTube. I’m trying to get the word out there because it has been a game changer for my husband. Please refer to the comment I made to Doc Irish’s column regarding slowing down and his dog Jax. Good luck!
Sandra
I identify with what you are saying. My sister has the, even faster declining , Parkinsonism MSA. I am constantly investigating new treatments or devises to help her condition. She seems to take no interest in it. She goes to therapy twice a week but does not follow up at home. She seems resigned to her fate. I guess I should be happy with that. I have read that apathy can be part of the disease.
Posy
Absolutely! I fight apathy daily, even just to get up in the morning. When it’s a good, sunshiny day, I can cope, joyfully learning new pieces on the piano (to perform) and cleaning, and engaging with friends. When it’s dark and gloomy outside, I want to give up.
Jeanne Taylaor
Hello,
I have been told that I have "run of the mill" Parkinson's. How could this be interpreted?
Nora Quesada
Great article, Mary. Your reflections have been a guiding light for me. My husband has PD, and I've experienced the same feelings you expressed towards your Dad: "I wish he would do more...". Your article has helped me understand that I can only do so much, and it's crucial to find a way to live my life without compromising my physical and mental health. I can't thank you enough for sharing your experiences.
Jeffrey Henry
Does your dad do voice exercises
That helps a lot if done properly
Glad he boxes I’m a patient at Cleveland clinic
I’ve had P D for about ten years. I work on balance yoga and I jump rope. Most people don’t know I have it. Cause I decided to attack this full time so far it’s working!!!!
Best
Pamela Mathison
Yes, we wish our loved one with PD would work harder at slowing the progress of this disease. And we have to realize that they are the one facing a neurodegenerative disease for which there is no cure. It's great that your father is exercising regularly, especially when apathy is a typical symptom of this disease. As far as speaking less goes, it's an effort for him to speak up when the disease has softened his voice. Besides PD, my husband also has mild cognitive impairment and says that it's harder to have conversations when he can't find the right words or follow a train of thought - and he doesn't "want to sound stupid." So I understand his lack of input in a conversation with others. I wish it weren't so, but I have to accept his limitations, knowing that it won't get any better.
JimElyce
As a person w Parkinson’s I understand what your Dad feels.. I think. You feel like regardless of what you do, you are fighting an uphill battle. You tire more easily., And even going to the gym and exercising, you see no progress. I went to the gym two times a week for two years. Then last November life got in the way and I quit going. It has been the most difficult thing to get back into the process. I’ll go once or twice and then let every day life take precedence. Just be understanding of your dad because he just needs to feel support he is doing the best he can.