5 Things I’d Tell Anyone With Young-Onset Parkinson’s (YOPD)

Before I get into this, I want to be honest about something. I was diagnosed with Parkinson’s at 55. The definition of young-onset Parkinson’s varies, with some organizations defining it as a diagnosis before age 50. So I’m not going to pretend that I have the exact same experience as someone diagnosed in their 30s or 40s.

But I do know what it’s like to receive a Parkinson’s diagnosis while you’re still very active and thinking about the next several decades of your life. And over the years, I’ve learned a few things that I think are worth sharing with anyone diagnosed with Parkinson’s at a younger age.

So, take these for what they are: not medical advice, and not a prescription for how you should live your life. Just some thoughts from someone who has been living with Parkinson’s for several years and has spent a lot of time thinking about how to live well with it.

Getting diagnosed with Parkinson’s is difficult at any age.

But being diagnosed when you’re younger can feel particularly disruptive. You may still be building a career, raising children, planning for retirement, traveling, pursuing hobbies or simply imagining what the next 20 or 30 years of your life will look like.

Suddenly, Parkinson’s becomes part of that picture.

The Parkinson’s Foundation notes that people diagnosed younger often face challenges involving careers, family responsibilities, finances and long-term planning that may be different from those diagnosed later in life.

There are plenty of things I could tell someone diagnosed with Parkinson’s at a younger age. But if I had to narrow it down, these are five things I would encourage you to think about.

1. Don’t put your life on hold.

A Parkinson’s diagnosis can make you start thinking about everything you might not be able to do in the future.

Will I still be able to work?

Will I be able to travel?

Will I be able to play with my kids?

Will I still be able to do the things I enjoy?

Those are understandable questions. But there is a danger in spending so much time worrying about what might happen that you stop doing the things you want to do today.

A diagnosis doesn't mean you have to stop making plans. Keep traveling. Keep pursuing your interests. Keep setting goals. Keep celebrating birthdays, anniversaries, vacations, milestones and everything else that makes life meaningful.

Your plans may have to change along the way, but adjusting your plans is very different from giving up on them. I would encourage you to keep setting goals and priorities, but give yourself permission to let those goals evolve over time.

2. Talk to your family and let them be part of the journey.

A younger diagnosis can affect more than just the person who receives it. You may have a spouse or partner. You may have young children. You may be helping aging parents. You may be thinking about having children. And sometimes our instinct is to protect the people we love by keeping our worries to ourselves. I understand that. But Parkinson's is going to affect the family in some way, so bringing them into the conversation can be important.

Immediately after my diagnosis, I brought my adult children and parents together to tell them. They have been part of this journey with me, supporting me for more than seven years.

You don't have to have all the answers, but you also don't have to go it alone.

3. Make exercise part of your plan. Now.

If you're younger and recently diagnosed with Parkinson's, this is something I would encourage you to take seriously. Don't wait until you feel like you need exercise. Make it part of your life now.

Exercise isn't a cure for Parkinson's, and it isn't a guarantee about what your future will look like. But research and Parkinson's organizations consistently support regular physical activity as an important part of managing Parkinson's and maintaining quality of life. Exercise can help with areas such as mobility, balance, flexibility, strength, coordination, mood and sleep. And research is increasingly suggesting that regular, sufficiently intense exercise may have effects beyond managing symptoms and may potentially influence the progression of the disease.

And you don't have to become a marathon runner. Walk. Ride a bike. Swim. Lift weights. Take a dance class. Play pickleball. Do yoga. Hike. Whatever gets you moving and whatever you're likely to keep doing. Find something you enjoy. Then make it part of your routine.

For me, exercise has become much more than simply a way to stay physically fit. It's a way of reminding myself that I still have things I want to accomplish. Setting a goal, working toward it, and eventually achieving it can build confidence. That's where I think exercise and self-efficacy intersect: every time you set a realistic goal and accomplish it, you have another piece of evidence that you are capable of taking action and making progress.

If you're diagnosed at a younger age, you may have an opportunity to incorporate more vigorous exercise into your routine. Take advantage of that opportunity. So don't wait. Start now. Make movement part of your plan while you're young.

4. Make your career decisions on your terms

For many younger people with Parkinson’s, the diagnosis comes while they're still working. That can create a lot of uncertainty. Do I tell my employer? When do I tell them? Will people treat me differently? How long will I be able to continue doing my job?

There aren't easy answers to those questions, and disclosure is a personal decision. Gather whatever information you need to make that decision, and make it on your terms.

One specific concern I had was the difference between going public and going “internet public.” Once your name is associated with Parkinson's on the internet, you can't go back. When I was first diagnosed, I had no issue telling individuals, but I kept my diagnosis off the internet. So if I spoke at a support group, I asked them not to publicize my name on any website.

Understand your benefits. Look at your insurance. Think about your finances. Know what resources may be available if your circumstances change. And most importantly, don't assume that a Parkinson's diagnosis automatically means the end of your career.

Maybe you'll eventually need to make adjustments. Maybe you'll change jobs. Maybe you'll work fewer hours. Or maybe you'll continue doing exactly what you're doing for many years.

You don't know yet. None of us do.

5. Plan for the future, but don't spend your life worrying about it.

This one may sound like it contradicts #1, but it doesn't. You can plan for the future, while still pursuing your passions today. A younger diagnosis means you may have more years of work, financial planning, insurance decisions and family responsibilities ahead of you.

That's a reason to be proactive.

Look at your finances. Understand your insurance and disability benefits. Make sure your important legal and healthcare documents are in order. Talk with the appropriate financial, legal or healthcare professionals when you need guidance.

And if you're interested in genetic counseling or testing, that's another conversation you may want to have with your healthcare team. Genetic factors can be more relevant in people diagnosed at a younger age, and counseling can help put testing and its implications into perspective.

But once you've done what you reasonably can to prepare, go live your life. Planning should give you greater freedom to live in the present—not give you another reason to worry about the future.

Parkinson's is part of your life, but it doesn't have to take it over.

If you were diagnosed with Parkinson's at a younger age, you may feel like the future you imagined has suddenly been rewritten. I understand that feeling. But your diagnosis doesn't mean you have to stop making plans. You may have to adjust them. You may have to approach some things differently. And there will undoubtedly be challenges you didn't expect.

But you can still set goals. You can still pursue your passions.

Keep moving. Keep challenging yourself. Keep finding reasons to look forward to tomorrow.

Your diagnosis is part of your story. It doesn't have to be the entire focus of it.