Advice to Someone Newly Diagnosed with Parkinson’s Disease
Recently, a distraught 43 year old woman was diagnosed with Parkinson’s disease (PD) and asked for advice in coping with her diagnosis. She didn’t know where to turn or how she was going to raise her children and manage her Parkinson’s symptoms. While writing a letter to her it occurred to me that other people may benefit from the advice also. Here’s an excerpt from the letter:
If I may, I’d like to give you some pointers from my nine year journey with PD. I was diagnosed at age 49. I am still very active and can do just about everything I could do before my diagnosis. I have PWP (people with Parkinson’s) friends and acquaintances across the globe as a result of my speaking engagements. I know PWPs who are doing well 20+ years post diagnosis. I have not had DBS surgery.
- Don’t let yourself dwell on what might happen or what you can’t do. Instead, focus on what is happening today and what you can do. The people I know that stay physically active have the best control of their PD symptoms. Parkinson’s is a degenerative disease that will progress whether you do something about it or not. Find an exercise regimen that will fit into your schedule. If you are physically limited and can’t do certain things then modify your routine and do what you can. You need to push back against the disease EVERY day.
- Protect your attitude. Don’t immerse yourself in articles on the Internet that tell you how your brain will deteriorate or ones that expound on PD symptoms that you don’t have yet. Walk away from well intended people who want to complain about their PD symptoms or how Parkinson’s has negatively affected the life of a relative. Instead, surround yourself with active and upbeat people with Parkinson’s. Join a support group, but find one that truly provides support and doesn’t just have meetings that are gripe sessions. Google “Laughter Yoga” and your city’s name to find a laughter yoga group near you. You don’t know about laughter yoga? Watch this: http://bit.ly/1y26XRv. Read positive, uplifting books and stories. You must control the information you let into your mind.
- Remember that your doctor works for you, not the other way around. Listen to your body. If you think your medicine is at too high a dosage then tell him/her. If you are having negative side effects don’t wait until your next scheduled appointment to say something. And, don’t assume that just because your doctor is a neurologist that he or she specializes in Parkinson’s disease. Your best bet is to go to a movement disorders specialist.
I trust that the points above will help you keep your Parkinson’s diagnosis in perspective and give you some tools to make the most out of your days ahead. As an ongoing resource you can subscribe to my FREE monthly newsletter at www.ahandbookforlife.com/ezine.
Feel free to contact me with questions or just to let me know how you’re doing.
Be well and keep smiling,