Recently Diagnosed?
You came to the right place! We're a group of people who have lots of personal experience with Parkinson's disease or as care partners for those with Parkinson's disease. We're here to help you understand what to expect and how to thrive, and to give you a giant hug.
What to Do First
The good news: Parkinson’s is not a death sentence, and it's not an emergency. It’s a call to fight. Fight for your health, fight for your future, and fight for all the things you want to do.
Don’t let it paralyze you. There are a million things you can do, and a very large chance that you will continue to live an extremely satisfying and extraordinary life.
The way you manage your diagnosis and living with the disease is a process. At first, you may be in shock, sad, or frightened. You will likely gradually come to terms with it, but it may take some time. Then, you might be determined to research all that you can. Or you might be a fierce fighter. Or you might just accept it and move forward. If you let it happen, you may find that the disease opens doors you never considered opening before. Just know that your initial feelings won’t last forever, and only time will tell what approach works for you.
Here are a few suggestions for getting through the process:
You came to the right place! We're a group of people who have lots of personal experience with Parkinson's disease or as care partners for those with Parkinson's disease. We're here to help you understand what to expect and how to thrive, and to give you a giant hug.
What to Do First
The good news: Parkinson’s is not a death sentence, and it's not an emergency. It’s a call to fight. Fight for your health, fight for your future, and fight for all the things you want to do.
Don’t let it paralyze you. There are a million things you can do, and a very large chance that you will continue to live an extremely satisfying and extraordinary life.
The way you manage your diagnosis and living with the disease is a process. At first, you may be in shock, sad, or frightened. You will likely gradually come to terms with it, but it may take some time. Then, you might be determined to research all that you can. Or you might be a fierce fighter. Or you might just accept it and move forward. If you let it happen, you may find that the disease opens doors you never considered opening before. Just know that your initial feelings won’t last forever, and only time will tell what approach works for you.
Here are a few suggestions for getting through the process:
- Get support. Find a group of people in similar situations who understand what you’re going through, but who will not suck you under into a vortex of depression. Attending groups and classes with people who are in very advanced stages of disease, for instance, may not be the best idea for the emotional well-being of the newly diagnosed. For starters, the course of your disease will likely be very different. And while your family members and friends are good sources of love, they often don’t know what to say or do with respect to your diagnosis. That’s ok -- you just need to find the ones who do.
- Exercise!!!! Exercise improves everything. It will make you healthier, feel better physically and emotionally, connect you to others, and EXERCISE IS THE ONLY THING THAT HAS BEEN SHOWN TO SLOW THE PROGRESSION OF PARKINSON’S DISEASE. A Rock Steady Boxing class checks both boxes -- it’s uplifting, and it’s great exercise. If you can’t find a RSB class in your area, just exercise (or join our online classes!). Exercise harder than you did before your diagnosis. The exercise must be intense in order to get results.
- Don’t freak out about finding doctors and treatments. Yes, you will need to find a neurologist you connect with (preferably a movement disorder specialist) and whose approach you agree with to help you manage your disease. And yes, there are medications that can help you. It’s like many other conditions in this respect. But finding all the answers is not an emergency, and while doctors can be extremely helpful in your disease management, the truth is that there is no cure. YET.
- Explore things that make you feel better. Try painting, yoga, tai chi, qi gong, running, biking, meditation, physical therapy. If you were really good at something before your diagnosis, don’t despair that the disease is affecting your performance. KEEP DOING IT ANYWAY. Accept that things will change. You may not be quite as good at golf as you were before, but ENJOY IT ANYWAY.
- Get involved in research studies and fundraisers when you are ready. I say when you are ready because this also depends upon how you process your diagnosis. You may be ready to jump right in and start fighting immediately upon being diagnosed. This may make you feel connected to those fighting to find a cure, and also made you feel like part of a community of other fighters. You may want to sign up for fundraising events, but you might also need time before you're ready to jump right in. And that’s okay. Just know that there is a world of people who are in this fight with you, and they will be here for you whenever the time is right for you.