I might have Parkinson’s, but Parkinson’s doesn’t have me!
It’s what’s written on Butch’s t-shirt that he wears proudly. It’s also the mantra the Delay the Disease class participants recite often.
Because there is no cure, exercise therapy is the only thing that slows the progression of Parkinson’s disease. We strive to DELAY THE DISEASE through our class by the same name. Class is like no other class/group I have ever taught. We start our warm up exercises to break the bradykinesia. People with Parkinson’s have what’s commonly called freezing. It occurs in many ways in different people at different stages of the disease progression. Bradykinesia may appear as a reduction in automatic movements such as blinking or swinging of arms while walking, or it may manifest as trouble initiating intentional movements or just slowness of actions. People look at Parkinson’s patients & believe they are mentally disabled, but it’s slow to react. The brain is not sending the message to move. The doctor in my class can tell me about diagnoses and conditions and or surgery step by step, but this talented person would still have trouble with simple tasks like opening the kitchen drawer and being able to grab a fork.
We practice a lot of cognitive skills, trying to do 2 or 3 different things at once is a huge challenge. Our time is spent playing silly games, that we make up as we go. For instance, someone picks a category such as a holiday, animal etc., then someone else picks a letter. Then we have to come up with something about the category that begins with that letter. The first round is easy but as we continue and things are just made up for instance … Presidents Day - letter P answer is pinochle, because Mike is sure there was a president that enjoyed playing Pinochle! You can always find the class by listening and following the laughter and the loud shrieks of joy.
We are practicing using our voices because voices of the class attendees are not loud due to the poor communication between the brain and the muscles that control the vocal cords. This makes their world become ever smaller and limited. They can’t play many games with their families anymore (dexterity, freezing) they don’t want to be embarrassed are to embarrass their loved ones. They are threatened by going to functions, and crowds are very hard to deal with. There is a lot of anxiety with close proximity with others. Can you imagine going to a buffet and being asked to hold on to your plate, drink and not be able to walk through a crowded restaurant to go back to your seat?
After questioning the class about how they deal with Parkinson's, here are some of their responses:
- Usually there is much denial after first being diagnosed, but we want to live.
- We want to enjoy life.
- Don’t give up on the things we have done in the past but instead find a way to live with the disease.
- We want to belong to a group that does not judge but rather knows exactly what each of us are going thru.
- The more we talk about it the easier it is to cope.
- We take time to share our life experience with others in the class.
- Depression is a huge hurdle we jump every day. Delay the Disease class helps.
- Not meeting in person during COVID made symptoms progress faster, but Zoom classes helped.
The next two “stories” were written by a Delay the Disease class member, but could have been written by anyone of the class participants. They share a common bond. The first was written in January, 2021. The second one was written during COVID and when we were holding the class through Zoom. Seeing these two accounts can help interested people understand the value that this program brings to the participants and the YMCA Healthy Living Center.
January 2021
"I am a person currently living with Parkinson’s Disease. This progressive disease can impact quality of life. The only method shown to slow the progression of the disease is exercise. Being a member of the YMCA and attending the Delay the Disease class at the Healthy Living Center has helped me tremendously.
The class provides important exercise and equally important personal support. Our instructors foster building relationships. I consider the other members as friends. We care for each other and have fun.
Lois is knowledgeable about Parkinson’s and she challenges us. Some of the activities we do are for flexibility, strength, balance, and coordination. We also work on cognitive skills. The activities are adapted to meet the needs of the class members.
The research I have read has stated that the most important exercise is one you will do. Attending this class is important to me. As a participant, I don’t want to miss class. I know when I leave I will feel better. Every class we work on physical skills, share stories, and most importantly laugh."
During Covid
"Lois adapts her instruction to meet the needs of the participants. We work on many areas including strength, balance, flexibility and cardio. She understands the needs of Parkinson's patients and chooses activities accordingly. Lois also leads coordination activities to challenge our brains. If we are not mentally and physically challenged, we don’t change the brain.
Besides our physical well-being, our class has enabled us to develop friend-ships. Sharing news of the week is an important part of class. And, being on Zoom, we’ve been able to share our pets, grandchildren, and hobbies. Together we always stand strong."
Lois Turner, YMCA Healthy Living Center Health & Wellness Director
