exercise

Research into Parkinson’s continues but don’t wait for a cure. Encourage your loved one to do everything they can now.

I get often get information on new research breakthroughs for Parkinson’s Disease in my daily newsfeed. It is good to see so many scientists are working on this topic, however, it is still doubtful anything will lead to a cure for my husband. The latest note I received talks about a new imaging technique to see the smallest alpha-synuclein clusters with the hope they will be able to detect a pathway for early development of the disease. An exciting development, but they are only able to detect these in a post-mortem brain. This is not really helpful for those living with PD. It reminds me of when my father was diagnosed in the 1980’s and the doctors told him they felt he had Parkinson’s but couldn’t be sure until after he died so they could autopsy his brain for confirmation.

In the meantime, the only proven method of slowing this disease is exercise. Movement of any sort helps, the more the better. Funny since movement is often the thing PD targets first. Thankfully my husband has taken this advice to heart and tries to work out 6 days a week. He likes structured classes and does 2 days in-person plus 3 days on Zoom. We both go to the gym on Saturdays so he can get in some cycling. I think it is working for him because he was diagnosed 15 years ago and is still with me.

I am grateful for all of the research being done, but would like to see more of it directed towards reversing the effects. Until they do, I will keep encouraging him to do his exercises, keep taking him to his classes, keep going to the gym with him. It’s what I can now do to help him slow things down and preserve more of what we have. And with his focus on exercise, I’m also getting healthier. It’s a positive consequence for us both.

It’s necessary to have a support group for connection, advice and understanding, but remember that what works for someone else may not work in your journey with Parkinson’s.

I love the input I get from my support network. They always have stories about medications or adaptive tools that have worked for their loved ones. I can look to them for ideas on different challenges we face and know that they will share good information. It was from this group that I learned about Rock Steady Boxing, bidets, and transfer poles, all interventions that help make our daily activities easier. I even have members reach out to me with questions from time to time and I am flattered that they think of me as a resource. I always remind them that I can only speak from our experiences and that they really should consider anything I say as a suggestion not a solution.

Our journey with PD has been full of trial and error, or maybe more accurately hit and miss. We can’t really know if a pill or adaptive device is going to be helpful until my husband actually gives it a try. It doesn’t seem fair since we are all dealing with the same illness. When someone finds a medication that helps them or provides a healthy bowel routine, it should be transferable to everyone with the diagnosis. We should be able to share our knowledge and everyone within our network would benefit. Unfortunately, the pool has to be much larger than our local group of about 30 folks with the disease for any real similarities to show.

Just as everyone with Parkinson’s looks different, the way they respond to medications and the tools they find useful are going to be different. That’s why it is helpful for me to also maintain a relationship with his medical team. If my husband’s neurologist, physical therapist or PCP has tried this intervention with other patients, they may have a better handle on whether it might be useful for us. Combining the experiences of fellow CarePartners, who know about the daily life challenges of PD, with the knowledge of professionals who have studied this disease hopefully gives us the best chance of finding good interventions. Always remembering that it’s going to be 50-50 whether it will work for my husband.

Most CarePartners are well aware of Bradykinesia, the physical slowness that accompanies a Parkinson’s diagnosis. It is important to understand the effects of Bradyphrenia, slowness in brain processes, too.

Those Brady twins, as I have come to think of them, are the bane of this Parkinson’s CarePartner’s existence. They work hand in hand to slow down everything my husband tries to do. It is no wonder that he feels exhausted when he is having to consciously work with his brain and body to do activities that were once automatic. He pushes back on the physical challenges by exercising. Staying active has helped him slow the progression of symptoms and gives him some semblance of control of his body. We can only hope that this activity also helps speed up the processing centers of his brain, but it’s much more difficult to gauge.

One of the questions his neurologist asks is whether he can do complicated or multi-step tasks and the answer is no. He used to be able to handle multiple challenges easily, but now has to have directions broken down into smaller steps. It isn’t that he doesn’t have the capability, it’s that his brain must work through each step and send instructions to his body before moving on. It becomes a difficult and tedious problem for both of us as I try to help him and often just make things worse.

I am learning to practice patience and step away so he can complete things in his own way and his own time. I am learning to ask single questions and wait for his response before adding to the conversation. I am learning to let him know when we need to hurry and ask if I can help or take over a particular task to get it done. I am trying to be respectful of the man who is trapped in a body that becomes more difficult for him to manage every day thanks to Mr. Parkinson and those darn Brady twins.

Exercise your body, exercise your mind and exercise your soul every day to keep your entire self flexible and prepared for whatever life brings.

I put my body first because a healthy and relatively pain-free body is essential when living with someone who has a chronic illness. I know how important working out is for my husband, I don’t always remember that it is just as important for me. Exercising, getting the blood flowing throughout my body, is also key to keeping my brain healthy so it can manage everything else. Having a healthy body and brain gives me the energy, and capacity, to provide the support he needs while continuing to pursue my personal interests and self-care.

In addition to physical activity every day, I like to find ways to stretch my mind. I read the local newspaper daily and try to stay informed about current events. I find time for computer games on my tablet, solitaire and sudoku or matching games that give different challenges. I follow several Parkinson’s research websites looking for answers to challenges we face. The older I get, the more often I find myself standing in a room wondering why I am there. Any activities that might help me maintain the brain I have left has to be good, right?

Finally, I take time every day to exercise (or really pamper) my soul. I can only spend so much of my time in the CarePartner role before I find myself getting frustrated and tired. My way of fighting that is to find a space in my day to reconnect to myself. My husband takes naps daily which gives me a chance to focus on my own needs. This is my time to write or play games. My favorite activity is writing because it gives me the opportunity to vent negative feelings in a safe way rather than put them out into the world around us. I journal what’s happening in my day, but once that is done I work on creative short stories and poems. The creative writing allows me to escape into a different reality for a while. That hour or so gives me a break midday to rest, reflect and refresh my soul. He needs the sleep and I need the quiet. It really works well for both of us.