What happens when one embraces their situation?
Cheryl and I have been a part of Parkinson Community Fitness since its inception in 2019. Shortly before we joined we had been members of the Blue Ash YMCA. She more than me recognized the value of exercise for relief of her symptoms of Parkinson. I did not but over time I have become a believer. Slowly, ever so slowly, after all I am male, I have educated myself about my wife’s affliction and what seems to work for others to mitigate Parkinson’s symptoms.
Much that I read and discuss with others about food and PD boils down to a few inspirational rules to be guided by:
- Protein interferes with absorption of Levodopa and Carbidopa (Sinemet) and this absorption occurs in the gut, so, what one eats and when one eats it is coordinated with medication intake for best results.
- Eat more poultry and fish. Eat less beef and pork. Fat is hard to digest.
- Refined sugar should be avoided as much as possible. Dark chocolate is good.
- Eat more fibrous foods – shift to a plant based diet.
- Eat less at any one time – eat more but smaller meals.
- Drink about 64 ounces (½ gal) of water each day. A glass of red wine is good. Black coffee is good. Beer is better than sugary soft drinks. Diet soft drinks should be avoided.
The MIND (Mediterranean diet to Inhibit Neurological Disease, or some such) diet approach seems to work well according to the experts. This style of cooking is very different from the “American Middle Class” diet that I grew up with.
As a kid growing up, Mom made meat, potatoes and a veggie. And gravy! The gravy was “to die for.” Many of the techniques I learned from Mom work with the MIND diet. (Mom used to make soup in her oven.) Many of the techniques I have learned by putzing with MIND diet books involve roasting in an oven – a method I much prefer.
Heat is heat. Ovens are much better at temperature control overall. Pots boil better on a burner (hob) on the top of the range. Frying things adds fat to the food and requires a lot of attention which is not required by boiling or roasting in an oven. My rules are roast if you can, boil if its pasta or rice, try to avoid frying.
Baking is fun. Do not forget dessert. There should be some reward for eating healthy.
Exercise, exercise, exercise. Stretching is good. Walking is good. Most importantly find something that you like to do and keep doing it. Do it everyday. If you like to walk outside, do it. It is the care partner’s job to go slow or at the parkie’s speed. Talk about life. Make a new memory.
Read and educate yourself. Care partners must do this together. Discuss things with each other. Read every book you can find. Subscribe to newsletters. Read the information posted by https://www.michaeljfox.org ; https://davisphinneyfoundation.org ; https://parkinsonsdisease.net/ ; https://www.parkinsoncincinnati.org – and others.
Books: (none of these are light reading)
- The MIND Diet by Maggie Moon
- Diet for the MIND by Dr. Martha Claire Morris
- Parkinson’s Disease – the complete guide for patients and caregivers – by Abraham N. Lieberman M.D., Frank L. Williams
- Brain and Behavior – coping with Parkinson’s disease by Joseph L. Friedman M.D.
- Parkinson’s Disease (3rd edition) – A complete guide for patients and families – by William J. Weiner, Lisa M. Shulman, Anthony E. Lang – all M.D. [John Hopkins Press]
- Brain Fables by Alberto Espay, Benjamin Stecher
- A Poet’s Diary – the mind of a parkie by Stan Bryant
There are lots of books out there. There are many folks who blog about their experience as care partners or parkies. Search for these on WordPress (.com) and other do it yourself web publishers.
Find a support group to chat and discuss life.
Social and Friends
About six weeks ago we ran into a friend of mine as we were entering Parkinson Community Fitness (PCF) for Cheryl’s class at noon one Tuesday. I was surprised to see Bill a long time member in my stock club coming out after an exercise class. We chatted for a bit and he told me he had been recently diagnosed with Parkinson’s disease. How he found PCF so fast is something I must ask him.
PCF is dedicated to exercise and social activities for those with PD. Every day that I take Cheryl to this place for her various classes I marvel at what a gift we have been given here in Cincinnati.
Parkinson Community Fitness Mission: To provide a dedicated space for Persons with Parkinson’s disease and their families to go for exercise, support and social events.
Parkinson Community Fitness’s Purpose: PCF will provide a solution to a long standing and often unspoken problem for those with Parkinson’s Disease.
These two statements from them bring a joy to my heart that is hard to express. At first when Cheryl was diagnosed our thought was, okay she can take these pills and all will be well. And for the first couple years that was generally true. Her movement symptoms were light at first. That is no longer true. As the disease progressed she sought out a new doctor who with a nurse practitioner have been a guiding light to helping her deal with day to day and lately creeping mental issues.
Her doctor is part of a group associated with UC Health and every year they have a symposium where they discuss treatments and progress in the realm of Parkinson. In 2019 we sat at a table Barb and Mike Zappia both of whom were proudly wearing their PCF T-shirts. I asked about the place printed on their shirts. Barb told me that they were not open yet but would be in a couple weeks. A couple weeks later Cheryl and I went to find them and we both joined for six months. I canceled our membership with Blue Ash YMCA. It was my first step towards embracing our future with this annoying disease. I did not realize it at the time but I had started to face up to taking the best care of Cheryl that I could. It is tricky to not be stifling to your care partner.
Cheryl has always been positive about learning more and finding solutions to her disease. This is true even with her continuing slow mental deterioration. She does not recognize that as a barrier just something slightly more annoying to deal with. I on the other hand have plenty of negativity for both of us. Recently Lisa Coors the owner and founder of PCF has started a series of lectures for her clients to fully explain the usefulness of exercise, diet, attitude and training for improving life with a neurological malfunction like Parkinson‘s disease. I knew that Cheryl would be interested so I signed us up and kept reminding her about it (to get through her memory issues.) When we got there a little late, there was my friend Bill and his wife Becky sitting in the front row eager to learn more about living with this malady.
After the question and answer period at the end of Lisa’s talk, the questions that he had asked as well as comment that he had made led me to two conclusions. Number one, Bill had no intention of sitting down and feeling sorry for himself and two, he like Cheryl would learn as much as he could about what was necessary to keep himself healthy for as long as possible. Becky like me would carry the negativity and emotional load for the both of them.
Chatting after the talk, I proposed that we get together for dinner or lunch and chat about life with Parkinson‘s disease. Today I tracked down their phone number and called to invite them to our house for dinner and talk. I will cook. I am further embracing our situation. I hope to help my friends with this disease. I remember that our fate seemed a lonely one as Cheryl’s disease worsened with her cognition and as mental acuity declined.
As I write this I feel inspired and hopeful that I can help others. Maybe?