By Elizabeth Grover
When a new diagnosis of Parkinson's is handed down, there is always someone who is surprised. No matter how much you may have known deep down that it was probably Parkinson' s, most of us are still surprised -- even horrified -- to be told we have a degenerative, incurable disease. How can we live with that? But then we start to collect information about others who are living with this disease and how they handle it. And we read about the researchers that are seeking answers. And the doctors who are doing their best to help us manage Parkinsons's. And we meet the personal trainers who know a lot about what exercises I need to do and how often. And I realize that if all these people are putting this much effort into helping me live with this disease, I should make the most of it.
So in addition to handling my own PD, I started a program for newly diagnosed Parkies. The people that attended the three-session group -- kind of an introductory support group -- were over their surprise. They were ready to get to work -- learning as much as possible about PD, getting going on an exercise program, and offering each other support by sharing their stories. And almost the most important task -- keeping up their attitude.
The vast majority of the participants have decided to continue meeting as a weekly support group. They remain committed to learning all they can about their condition (or their care partner’s condition) and to sharing what they learn with others. These are the PWPs (People with Parkinson’s) who will make quality of life a primary goal and will do all in their power to fight PD. You will see them in exercise classes and at educational programs. And I believe that they are the support group leaders of the future. I believe that they will find as I have that helping others with Parkinson’s can be rewarding. If you are interested in focusing on your quality of life and on helping others, check out the support groups on the PSW website. A support group is a great vehicle for living WELL with Parkinson’s. Join us!
Elizabeth will share more of her personal journey with Parkinson’s here on Friday. Check back to read more!