This summer, the American Parkinson Disease Association (APDA) hosted a webinar on how to be optimistic with Parkinson’s disease (PD), featuring Bill Rasmussen. In the webinar, Bill, diagnosed with PD in 2014, explained how he manages his life with optimism and described how optimism can be contagious with your family members. He shared examples of various exercises and activities that he performs to not let PD get in the way of his life. We at Stanford Parkinson’s Community Outreach are sharing our notes for this webinar.
According to Bill Rasmussen, those with PD often experience poor mental and emotional well-being, which negatively affect quality of life. Optimism helps to promote resiliency, reduce distress in health crises, and protect against the effects of negative mental health outcomes. Research indicates that those with PD often struggle to experience optimism. Nevertheless, by reframing optimism as a choice rather than a feeling, individuals with PD are able to make decisions that allow them to progress on their journey toward optimism.
Bill noted the importance of exercise in maintaining optimism. Check out these Stanford Parkinson’s Community Outreach webpages on live, virtual exercise classes and PD exercise videos:
Bill also mentioned the value in finding a community. If you live in Northern California and are looking for a PD support group, see our list here:
Northern California PD Support Groups
The webinar was recorded, and is accessible on the APDA’s YouTube channel here
My detailed notes are below.
Regards,
– Sheela Sakariya
“Intentional Optimism” – Webinar Notes
Webinar Host: American Parkinson Disease Association
Webinar Date: August 21, 2021
Speaker: Bill Rasmussen, Founder of ESPN, Seattle, WA
Summary by: Sheela Sakariya, Stanford Parkinson’s Community Outreach
How to be optimistic with PD
Individuals with Parkinson’s disease often experience poor mental and emotional well-being, which negatively affect their quality of life. Optimism helps to promote resiliency, reduce distress in health crises, and protect against the effects of negative mental health outcomes. Research indicates that individuals with PD often struggle to experience optimism. Nevertheless, by reframing optimism as a choice rather than a feeling, individuals with PD are able to make decisions that allow them to progress on their journey toward optimism.
Living with Parkinson’s is hard; that fact is indisputable. But we can choose to be optimistic or live pessimistically. We can see the sunshine through the storms, or just see the storms. We can choose hope or defeat; it is ultimately and always our choice. We need to consider the possibility that the optimism or pessimism we feel is a decision we are willfully making. To say it another way, we choose whether we’re going to give up or keep fighting, whether we’re going to focus on the negative or look for the positive.
It is important to get up everyday and be enthusiastic about living your life. Be excited, energetic, positive, and think about the possibilities that life holds for you even with PD. Do not stop living especially when you are diagnosed at an older age. Parkinson’s is not an easy disease, but we can make it easier on ourselves with a very positive attitude.
Types of exercises in PD
Start exercising before getting out of bed. Do some light exercises in bed with your knees, shoulders, and legs – stretch all muscles! Walking is a great exercise which stimulates your body and your brain. One of the interesting exercises that is recommended is walking on your toes around the room in a circle.
Exercise the brain In PD
All of us engage in some type of physical activity which is very important for PD. But, at the same time, it’s crucial that individuals with PD also perform some mental exercises. When you wake up in the morning, have a song in your mind, and hum that song while you are still waking up. Make your mind a “private streaming service” with a bright cheerful song. If you do that, then you will have a very positive start of the day – your day starts out being energetic long before breakfast arrives.
Eliminate negative thoughts
Open a new window and open a new door everyday! Eliminate negative thoughts and feelings and emotions from your brain. Anticipate that it will be a great day and travel a new highway everyday. Surround yourself with positive people and thoughts.
Go for a walk
Have your favorite (old) music playing in your head and march to that music while you are walking. Your brain is a wonderful machine and it will remember things from 50-70 years ago.
Read everyday
Reading helps stimulate your brain and brings memories from the past.
Optimism and Depression in PD
Depression is absolutely part of Parkinson’s disease. It’s a medical condition that needs to be treated by seeing your physician. We cannot undo depression with smiles, positivity, songs, etc. It is highly recommended to seek medical advice from a healthcare professional for individuals who are undergoing depression with PD.
Sharing Optimism in PD
It’s important that your friends/family are also sharing the optimism with you. It’s highly encouraged that the family members and caretakers are aware of PD symptoms so they can talk freely with the individual with PD. Optimism can be very contagious and can be passed from one individual to another easily. Family members play a crucial role in ensuring a positive and safe environment for the person suffering from PD. It might be as simple as providing a cue for an upcoming hill during a walk, or ensuring the person with PD has had his meals/medication in a timely fashion.
Question & Answer Session
Question: When I tell someone I have PD, they respond in a sympathetic way as if I am going to die next month. How do I get the person to not respond that way?
Answer: Awareness is key to this type of situation. The person with PD needs to talk about the disease in a very positive way so that the diagnosis of PD is not misconstrued. We should talk/encourage more research and participate in more research for PD. Anyone who has PD should not be embarrassed about it and let others know that you go for a walk, read, and don’t let yourself be overwhelmed by others opinions. Spread the word about what the disease is about and keep the thoughts alive that we will someday have a cure!
Question: Do you have any idea of what might help support your memory in terms of remembering numbers or incidents?
Answer: I have always been very interested in numbers! I still keep playing with excel spreadsheets and numbers in my free time. I have always had an affinity for numbers, and being a sportscaster I was always talking about numbers/games, etc. for a number of years. Certain things are easier if you can commit them to memory and the conversation just flows.
Question: Do you have advice about optimism for someone who lives alone with PD?
Answer: For a long time I was living alone. First, I always made sure I was being careful where I went and what I did. And secondly, I made a lot of friends when I was living alone so I can be surrounded by them for conversations and group activity. And don’t be afraid to ask for help. Don’t put yourself in hiding – be out and about and make new friends.
Question: Can you give us an overview of your diagnosis and history of PD?
Answer: Sure! I was diagnosed with PD in 2014. Prior to that, I had some tremors in my hand, and my physician asked me to go see a neurologist, and that’s how I was diagnosed. It was very mild at that point and so no medication for a short while. After a while, I started taking some medication regularly and exercised regularly. Try to walk 2-3 miles a day, and move your torso and joints to keep it flexible. Be open about it and be positive about it. For mental exercise, try to keep your computer open and look for interesting information (including numbers) and start doing mental exercises and give yourself a challenge. Also, find a project to work on such as writing a book, gardening project or something that will keep your brain challenged.
Question: When you are giving a speech, do you find that the tremors get worse?
Answer: When I travel for speeches or for work, I used to get to the venue one day ahead of time. Now I plan ahead and get there two days ahead of time so I can settle in and there is time to deal with anxiety or any such symptoms. Preparation is very crucial in order to be ready for larger events so things go smoothly.
Question: Do you have inconsistencies in PD symptoms in your day to day life ?
Answer: Yes! There are no tricks for this one! It’s interesting what the brain does – when I am speaking I don’t think about my symptoms. But there are certain activities that I avoid such as golfing because I have too many tremors.
Question: Has APDA helped you find a Parkinson’s community?
Answer: Yes! The APDA has so many opportunities to bring people together. When all of us are in the same room with PD, we all feel like we understand each other. And trying to participate in as many activities as possible makes the brain more active. Meeting different people and understanding their lives also motivates you and gives you a lot of optimism. (There are PD individuals who are golfers, Lyft drivers, bakers, etc.)
Question: Do you have any advice for someone who has been diagnosed at a younger age (50 years)?
Answer: I know two people who have early onset PD. One of them is a writer and he was very concerned about taking medications and how it would impact his career. Eventually, he was able to speak to his doctor and continue his career. The other is a young lady who is a PE teacher who developed PD in her 40s. She ended up making PD her life’s work! She opened two physical therapy studios that help others with PD. She is also heavily involved in finding possible solutions for PD and encourages her group to be part of research for PD.
Question: What is your diet and any specific diet tips?
Answer: Try to avoid alcohol! And eating a lot of fruits and vegetables everyday helps your body. Eat a reasonable amount but don’t gorge yourself on food. Try to cook healthy meals and eat healthy. Try to stay away from too many sweets. Stay hydrated.
Question: Do you do any form of meditation?
Answer: No! I don’t do any meditation and it is not part of my routine.