Getting a Parkinson’s disease diagnosis can be devastating, but it should also be motivating. Now’s the time to take charge of your health and your care so that you can manage your life going forward. Here are seven things to do right now, according to experts at the Johns Hopkins Parkinson’s Disease and Movement Disorders Center:
1. See a Specialist
If you haven’t done so already, it’s important to see a movement disorders specialist, especially if you have nagging symptoms that remain untreated despite your current therapies. This doesn’t have to be your regular doctor or primary neurologist. A movement disorders specialist will be on top of new treatments and advances in therapies.
A specialist will have the full scope and knowledge of what’s going on in the field of Parkinson’s disease. Research has shown that receiving care from a movement disorders specialist extends your life expectancy and the time before you reach the more disabling stages of Parkinson’s.
Find one by searching the Movement Disorder Specialist Finder at Partners in Parkinson’s.
2. Give Yourself Time to Adjust
Over time, you’ll likely become an expert in Parkinson’s disease — but right now, you’re a newbie. Give yourself time for the diagnosis and all it might mean to sink in. Then, get educated: Ask your doctor for information you can take home and read, find other people with Parkinson’s in your community or online to talk to, and browse sites like the National Parkinson Foundation and the Michael J. Fox Foundation for Parkinson's Research.
3. Be Honest
While you need not tell everyone you know right away, try to avoid the impulse to totally hide your diagnosis. It’s important for your long-term well-being to open up to friends, colleagues and loved ones.
Your family is most important, of course. If you don’t already do so, set aside regular times to have conversations with your significant other about how things are going and what you both need.
Be honest with adult children about the reality of your diagnosis; they are an important part of your care. If your children are young, they need reassurance that the disease is not contagious, that they did nothing to cause it (a fear many children have when a parent becomes ill), and that you are still the same mom or dad you’ve always been. These are ongoing conversations.
4. Boost Activity
Don’t wait until symptoms become more troubling before you try to counteract them with exercise or physical therapy.
If you change your life to be more active now, you’ll increase your chances of staying active longer. Try to get active pursuits, like biking, hiking, swimming and other forms of exercise, integrated into your lifestyle (if they aren’t already), so that they become ingrained habits. If these seem boring, consider boxing, yoga or even Argentine tango classes designed for Parkinson’s patients!
This activity helps build a reserve against losing physical function as the disease progresses. It’s normal for anyone to lose muscle mass, coordination and motor speed as they age, and it’s even truer for people with Parkinson’s. But if you have a baseline of being as fit and conditioned as you can, you’ll do yourself a great service later on.
5. Stay Engaged
Mental and social engagement is similar to physical fitness — you use it, or you (gradually) lose it. Get together with friends and family, travel, and join clubs. Depending on where you are in your professional life, staying in the workforce can give you a sense of purpose and offers regular engagement with others.
That said, if work is too physically demanding, consider going on disability or retiring so you can focus more on social activities that keep you mentally active.
6. Track Your Symptoms
Pay attention to your body and how it reacts to medications and other treatments, and how you feel at certain times of the day or after specific activities. This is especially important as you receive new medications or have doses adjusted. It’s up to you to tell your doctor what’s working and what isn’t. A chart, a notebook, a file on your computer, a spreadsheet — employ whatever system works for you.
7. Consider Research
While participating in research may directly help you physically (on the chance that you’ll get into a study for a promising new treatment that works for you), it may also leave you better off just for having been a part of something that could improve the lives of other Parkinson’s patients.
You will likely have a sense of purpose and something to get involved in. In addition, you often get additional care from doctors and researchers, and the benefit of networking with other patients. Find a research study that may suit you via the Michael J. Fox Foundation or ClinicalTrials.gov.
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