When a large group of people with Parkinson’s was asked to give advice to others who were recently diagnosed with the disease, the overwhelming response of over 200 responses was “Exercise! Keep moving!” But that wasn’t all. There were many other advisements freely given, but what struck me was, it’s easy to give advice, but how does one follow through? How does a comment like “Live your life” help someone? Sometimes you have to explain or show the person with Parkinson’s disease what “Live your life” looks like. And it won’t look the same for someone else.
How do you…
- Live your life? One day at a time. Sometimes one moment at a time, without focusing on the ‘what-ifs’. Focusing on your fears or the concerns that PD can create, takes your focus off the present. And the present is where the living occurs. So, if you’re still mobile, get that dog to take you for a walk and if you’re not, put some upbeat music on and read something positive.
- Educate yourself? Everyone ‘googles’ but that can be a scary start to gathering information on Parkinson’s disease. Start with specific websites like the Michael J. Fox Foundation, which (in my opinion) is overall one of the best.
- Find a support group? Either locally or on the internet. There are several on Facebook which are ‘closed’ meaning they don’t allow people without PD in and it’s closed to ‘viewers’, meaning you have to be an accepted member to see what’s posted. Type in ‘Parkinson’s disease’ in the search bar and you’ll get a list of different PD groups. Local support groups in your area can be found by visiting the Parkinson’s Foundation website. It’s invaluable to be able to connect with someone who’s on the same or similar journey and trying to find their way. It helps to remember that you are not alone.
- Find a Movement Disorder Specialist (MDS)? Some towns just don’t have one so you have to determine how far you’re willing to travel. Anyone with PD will tell you a good MDS is worth their weight in gold but if you’re unable to find one near enough to you, a good neurologist can help just about as well. Some tips: Don’t settle with the first diagnosis. Always get a second. Don’t settle with the closest neurologist or MDS. Drive the hour or two or three if you have to. It’s worth every mile. Ask your support group who they go to.
- Exercise? This one suggestion on what advice to give a PD newbie was overwhelmingly at the top of the list of over 200 PD’ers surveyed!!! Start by discussing the topic of exercise with your doctor. We are all in different physical shape and what may be beneficial to one may be a bone breaker to another. I think one of the overall safest things you can do is walk. Keep your eyes focused in front of you so you can see any cracks or bumps that may trigger a fall. Take your well-behaved dog to help steady you or take a walking stick for balance. Whatever you choose to do – walking, cycling, boxing, dancing, Tai Chi – just do it! The earlier you start exercising, the better off you’ll be. As one person put it, “Exercise like your life depends on it because it does.” Move it. Move it. Move it.
Talk about it? You can start with a close friend and perhaps you’ll become so well educated you’ll be talking to hundreds at a time! This is where support groups shine, because you can talk about your experience without judgement, get new insight, not feel isolated or alone, and are surrounded by others who really understand.
Some advice that doesn’t need any input:
- The more you stress the worse the symptoms
- Take your meds on time
- Cry when you need to
- Everyone’s journey is different
- It’s okay to ask for help!
- Give yourself time to get your head around the diagnose. Allow yourself time to grieve
- Don’t overthink having PD. Don’t dwell on it.
- Keep a sense of humor. If you’ve never had one, it’s time to get one.
- Try to stay away from stress. Stress makes PD symptoms worse. Eliminate what you can out of your life.
- Discipline yourself. Get what info you can on PD and then make a plan. Get a routine on taking your meds on time. Keep a log/journal to take to your appointments.
- Stay away from Dr. Google.
- Exercise your brain as well as your body. Word games. Number games. Play games with your grandchildren or your kids or friends!
- Don’t let it be a death sentence.
- Never, never, never, never, never give up.