Community Views: Best Parkinson’s Advice Received

Living with Parkinson’s is a journey. It’s a process of learning and relearning how to adjust and live with this challenging diagnosis.

We know that many of you in the Parkinson’s community have lived with the disease for years and that you have found what works for you. In large part, you’ve found what works because you have followed the advice of others in the community who have come before you.

We wanted to know what the best advice is that is helping you live a healthy, full life with Parkinson’s. To hear more, we reached out on the ParkinsonsDisease.net Facebook page, asking you to fill in the blank: “The best piece of advice I’ve received about Parkinson’s is _______.”

Nearly 30 of you shared which suggestions and advice have served you well over the years. Here’s what you say is working best for you.

“You cannot exercise enough!”

Exercise is one of the best ways for anyone with Parkinson’s to help maintain their balance and mobility. Plus, exercise can also help relieve many symptoms of Parkinson’s. The good news is that any physical activity helps, whether it’s walking, swimming, tai chi, or Rocky Steady Boxing, a group exercise class designed for people with Parkinson’s.

“Exercise! Move! Walk!”

“You cannot exercise enough!”

“Don’t sit still. Keep actively moving.”

“Join Rock Steady Boxing.”

“Take one day at a time.”

As some have pointed out, Parkinson’s itself is not fatal. Many people can go on to enjoy decades of life—which is key to keep in mind. We know it can be hard to mentally, emotionally, and physically cope with the disease, but if you can, try to appreciate the good days as they come.

One of the best ways to appreciate the good days is by working on a positive attitude. Attitude can be a big game-changer. Some of you have shared that maintaining a helpful outlook is hard, but that doesn’t mean it’s not worth putting the effort into.

“Take one day at a time.”

“It’s not life-threatening.”

“Don’t dwell on it. You can’t change it so just ignore what you can. Easy? No.”

“Never give up.”

“See a therapist.”

Mental health is an often-overlooked part of overall health with Parkinson’s. A therapist can help you find peace and acceptance with Parkinson’s, and can help you talk through whatever feelings - anger, sadness or resentment - you may be having. It never hurts to have more people on your team helping you feel happy and whole.

“See a therapist. Mental health is very important.”

“Stay off all the sedating drugs...”

Deciding to medicate is a deeply personal choice. For some, it may help. For others, the side effects may make taking certain medication not worthwhile. Regardless, it is worth putting the time in to talk to your doctor and others with Parkinson’s who are and are not on medication to see if certain drugs make sense for you.

“Stay off all the sedating drugs that make you a zombie.”

“Pay attention to your diet.”

Many people may not be aware that foods can promote brain health and alleviate the symptoms of Parkinson’s. For some, those foods include cashews, almonds, tumeric, cinnamon, and rosemary. Likewise, many with Parkinson’s find that avoiding inflammation-causing foods is also a good idea.

“Pay attention to your diet and hydration because gastrointestinal issues can really mess you up.”

“Don’t stop living.”

Parkinson’s no doubt affects so many aspects of everyday living, but not your whole life. This is not a life-threatening disease, and you can still enjoy much of your life as you had before. It might look a little different. You might need more help or move more slowly, and that’s OK. You still have a lot to live for and enjoy.

“Don’t stop living.”

We want to say a huge thank you to everyone in the Parkinson’s community who shared. We appreciate your shares as there would be no community without you.