Community Views: Advice for the Newly Diagnosed
The moment we first receive a new diagnosis, everything looks different. For many, there is a huge gap between first learning about a Parkinson’s diagnosis and learning how to live your best life with the disease.
We want to shorten that learning curve. To that end, we reached out on the ParkinsonsDisease.net Facebook group and asked: “What advice would you give to someone newly diagnosed with Parkinson’s?”
Nearly 60 of you replied, sharing tips about physical and emotional wellbeing. Here’s what you had to say.
“Start exercising NOW!”
The number one response to our question was to exercise. The more you are able to exercise, the better your balance and mobility will be. If you’re not sure what type of fitness to try, look into exercises that include stretching, cardio and resistance training. Good options include biking, yoga, weight training, dancing, Tai chi, water aerobics—truly, there are a world of options. Plus, a few of you mentioned Rock Steady Boxing, which is a nonprofit dedicated to non-contact boxing for those with Parkinson’s to increase physical health and wellness.
“Keep active and exercise whenever you are able.”
“Work your muscles and enjoy life.”
“Join Rock Steady Boxing!”
“Start exercising NOW!”
“Pay attention to your gait and balance.”
Specifically, you can do exercises that target balance. In the long run, this can have huge pay-offs. Likewise, strengthening your core is one of the fastest ways to gain stability. Videos of suggested exercises are easy enough to find online, or if you want more support, a trainer or physical therapy class can show you where to start.
“Pay attention to your gait and balance. I took a physical therapy class to improve my balance.”
“To try to stay calm because it will take time to accept this disease.”
This is one of the simplest and most profound pieces of advice: to slowly learn to accept the diagnosis. Furthermore, we love the reminder that when you first get diagnosed, you do have time to get your bearings, figure out what adjustments you may need to make and come to terms with having Parkinson’s.
“To try to stay calm because it will take time to accept this disease; it's not going to worsen over the next few hours, days or weeks.”
Several of you recommended finding out as much as you can about Parkinson’s. This can help you know what to expect, and what the care options look like. But—education is not for everyone. A couple people also recommended staying away from reading up on the disease. Only you know you. If reading about Parkinson’s will worry you, then don’t. But if you will find it empowering, do it. And if you don’t know, read a few articles and check in with yourself after—see how you feel.
“Read all you can about Parkinson’s.”
“Laugh a lot!”
In the beginning, it may be especially hard to find your laughter again, and that’s OK. Laughter is a sign of hope. It’s also a sign of acceptance. This means that right after getting a diagnosis, laughter won’t be your first response. But, if you can ease back into seeking humor, you will feel better. Laughing releases feel-good chemicals, and reconnects us to the fullness that is the human experience. If you’re not finding everyday life funny, try a stand-up comedy special on Netflix, or ask friends for recommendations for funny movies.
“Laugh. Laugh a lot. Especially at Parkinson’s jokes.”
“And laugh a lot!”
“Be patient with yourself.”
This is a piece of truly practical advice. So many of you have shared that tasks, chores and work all take longer with Parkinson’s. And that’s OK. If you need to allow yourself more time, do it. And we love the idea of grace—as in, show yourself some grace. Be kind to yourself as you walk this path. It will certainly be more bearable if you’re not mentally beating yourself up, but rather, talking as kindly to yourself as your friend would to you.
“Be patient with yourself.”
“You better learn to be patient! Because everything you do is going to be slower, take longer and be harder to do. In the beginning, I would try to get undressed and get trapped in my shirt! I would be pulling it over my head and then have a freezing episode.”
“Enjoy those things that give you pleasure.”
It could be easy to dwell on all the negative aspects of your diagnosis, but that won’t leave much energy for pleasure. You may not be able to enjoy everything you once did when your body was in its absolute prime, but you are certainly not in a place where there is nothing you can enjoy. Now is a great time to reconnect with former pastimes or discover new ones. Your life does not need to be small just because of a diagnosis.
“Get past your fear and enjoy those things that give you pleasure.”
“Remember your life is not over.”
So, so many of you phrase this idea with such positivity: Life is not over; it is just different than it was. Life does go on—whether you bring a negative attitude or a positive one. If you can find that place of acceptance, positivity and gratitude, your path forward will certainly be lighter, happier and more peaceful.
“Remember your life is not over. Your normal is just different.”
“You still have to do what you always did. A new normal.”
“Deal with it the best you can. It is going to throw you a curve ball at times. Just know that you are not alone.”
We wish to say thank you to everyone who offered such wonderful and heartfelt advice. We are so grateful to everyone who makes this community possible.
Have you or a loved one ever tried speech therapy?