One of the most common questions we receive from friends and care partners of people with Parkinson’s is this:
“My person with Parkinson’s won’t do anything.
I can’t get them to exercise, and I don’t know what to do.”
With everything we know about exercise and Parkinson’s, it would seem that getting people to exercise would be easy. But it’s far from it.
Here are just a few reasons why.
1) Many people who get a diagnosis of Parkinson’s have spent most, if not all, of their life not exercising. And then they’re suddenly told that along with taking their medication, exercise is one of the very best ways to feel better, lessen their symptoms and slow progression of Parkinson’s. It would be nice if they could just flip up the switch and become an exerciser, but that switch has a lot of weight keeping it down.
2) Many people who get a diagnosis of Parkinson’s have been dealing with pain, motor symptoms, trouble sleeping, fatigue, declining mobility and maybe even depression for many years. Showering them with all of the potentials benefits of exercising is simply not enough to get them going.
3) Exercising is difficult. High-intensity exercise is even more difficult. And we’re human. Sure, there are those among us who love the pain and the challenge and the grind of exercising day in and day out. But not all do.
So, once we put ourselves in the shoes of those who don’t naturally gravitate toward regular exercise, as well as those who just don’t feel well enough to do it, what can we do?
To get the most useful and actionable answers, we reached out to our always inspiring Ambassadors – some who are people with Parkinson’s, some who are care partners to people with Parkinson’s and some who work with people with Parkinson’s.
We hope that one of their ideas will speak to you so that you can encourage and support the people in your life to get moving, even when they don’t feel like it.
“You cannot get someone to engage in a serious wellness plan, including exercise, until they feel that there is hope. They have to trust that there’s something meaningful to look forward to and live for. For people who are newly diagnosed and for anyone who is having trouble motivating themselves to exercise, I would reiterate that this is not the beginning of the end, but the beginning of a new journey that can be rewarding and happy, as long as you allow it to be.”
– Steve Hovey, Davis Phinney Foundation Ambassador living well with Parkinson’s
“For me, my care partner Pat is a big help. If he doesn’t ride, I probably won’t go out, but once he gets me outside to exercise, I’m much happier. I think that for people who haven’t been exercising, it’s really important to start small with something they enjoy and then gradually build up towards more intense exercise. Group classes can also help because you get the necessary exercise and at the same time you build a community of support and friends. I also find online resources, specifically videos, to be motivational and encouraging.”
– Cidney Donahoo, Davis Phinney Foundation Ambassador living well with Parkinson’s
“For anyone trying to encourage a person with Parkinson’s to exercise, I would encourage them to do the following:
- Offer education to provide information about why exercise is so critical. Resources like the Every Victory Counts manual, pamphlets from Rock Steady Boxing, and scientific research can help explain the importance of exercise.
- Communicate with your person with Parkinson’s to open up an encouraging dialogue that motivates them to exercise. Sometimes a little nudging from a healthcare professional can also help to send a stronger message.
- The invitation is what makes exercise seem more accessible because a care partner who invites opportunities to move rather than nagging can be much more successful. It also allows honest dialogue about the barriers that your person with Parkinson’s may feel.”
– Kat Hill, Davis Phinney Foundation Ambassador living well with Parkinson’s
“Since isolation is so dangerous for people with neurological diseases, including Parkinson’s, I think it should be a priority to spend time with friends, and that time together can be spent exercising. I would also remind people who have difficulty getting motivated to exercise of all the scientific evidence for how important exercise is for people with Parkinson’s. Getting outside to exercise has also been shown to be beneficial because it helps with sleep by contributing to our circadian rhythms. Since sleeping is a problem for people with Parkinson’s, it’s even more important that people get outside and exercise to counteract sleep problems.”
– Patti Burnett, Davis Phinney Foundation Ambassador living well with Parkinson’s
“Invite, encourage, support and repeat, repeat, repeat. Recruit friends to reach out. Group classes are great, and it’s always much easier to walk into something with a buddy. However, I also believe that the person with Parkinson’s has to want it themselves too. You have to be a fighter and be willing to try.”
– Julie Fitzgerald, Davis Phinney Foundation Ambassador living well with Parkinson’s
“One of the most effective ways to combat apathy is by being part of an engaged community with people who keep each other accountable. Often it is people with Parkinson’s who are the best at motivating each other, rather than care partners.”
– Amy Carlson, Davis Phinney Foundation Ambassador living well with Parkinson’s
“One great way to get people with Parkinson’s involved in exercise is to include them in exercise studies as parts of clinical trials or other Parkinson’s research. I also believe that teaching behavior and attitude changes can help people go from a sedentary lifestyle to an active one. For many people, having an exercise buddy, being part of a class or having a personal trainer can really keep people accountable. I’ve found that without that outside stimulation, people are less likely to adhere to regular exercise schedules. At the end of the day, success breeds success, and the more you exercise, the better you feel.”
– Lorraine Wilson, Davis Phinney Foundation Ambassador living well with Parkinson’s
“When I work with people with Parkinson’s and their care partners, I encourage a multidisciplinary approach to care to increase interest and participation. We focus on educating people with Parkinson’s and their families on the importance of participation in symptom management and disease progression. It’s also important to find local programs that are of interest so that the person with Parkinson’s is motivated to be engaged. It truly takes a village to achieve these goals, but it’s certainly possible!”
– Julia Wood, Davis Phinney Foundation Ambassador and Occupational Therapist
“If I were working with someone with Parkinson’s who was having difficulty getting motivated to exercise, I would contact a local Parkinson’s group or a Davis Phinney Foundation Ambassador and do the following:
- Find Parkinson’s-specific classes or classes that people in the local Parkinson’s community particularly enjoy. The environment of the gym and the coaches make a difference.
- Encourage the person with Parkinson’s to go with a friend.
- If your person with Parkinson’s still drives, suggest they drive those to exercise classes who cannot drive. My husband does this and it gives him a sense of responsibility and a feeling that he is making a difference. This is because once these people start boxing or spinning or whatever is their choice, they feel different and the symptoms are at bay at least for a little while. Over time, the exercise class becomes a support group to them, and they wouldn’t miss it for the world.
- Even if you’re having trouble motivating your person with Parkinson’s to exercise, don’t nag them. Just make sure they know that you are there for them and be persistent in a caring way.”
– Coe London, Davis Phinney Foundation Ambassador and care partner to Bill
“Getting out with friends and family is one of the most important ways to encourage exercise because it keeps you accountable and changes your attitude.”
– Kevin Schmid, Davis Phinney Foundation Ambassador living well with Parkinson’s
“Following the recent replacement surgery I had for my DBS system, I’ve been struggling with apathy and motivation issues as a patient. Though there are a lot of great ways to encourage an apathetic person with Parkinson’s, I think it’s also important to remember that Parkinson’s is a degenerative disease. Sometimes other coping methods, including respite for caregivers, meditation or medication, should also be considered.”
– Corey King, Davis Phinney Foundation Ambassador living well with Parkinson’s
“If hope and meaning are missing from someone’s life, motivation of any kind is next to impossible. A positive attitude is infectious, so being around positive, hopeful people who set an example for others is essential. Defeating apathy depends on that ‘infection’ as much as it does on persuasion.”
– Jim Armington, Davis Phinney Foundation Ambassador living well with Parkinson’s
“Encouraging a reluctant person with Parkinson’s to begin exercise is certainly a community effort, so getting the person involved in a community can help. Inviting the person to a class or event, especially those that accept Silver Sneakers cards, is a sure way to help them find the motivation to be and live well.”
– Rich Wildau, Davis Phinney Foundation Ambassador living well with Parkinson’s
“When I meet people with Parkinson’s who need help getting started with exercise and taking control of their diagnosis, I like to offer them a variety of exercise opportunities. I think it’s also important to speak to a Movement Disorder Specialist because many of them will prescribe exercise. It can also be really helpful to attend a support group, especially because many of them will have exercise sections.”
– Joe O’Connor, Davis Phinney Foundation Ambassador living well with Parkinson’s
There you have it. The next time your person with Parkinson’s would rather choose to sit than move, pull one of these ideas out and see how it works. The first one or two might not stick, but the next one might. As several of our Ambassadors said, your attitude, your own behavior and your consistent and compassionate presence in their life count a great deal. So, stick with it and find what works for them.
And of course, resist the temptation to spend all of your time and effort encouraging them to move. Get out there and take care of yourself, too.
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