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Why Do We Have Support Groups?

By Bart Rinehart

We believe that support groups provide the best forum for the individual Parkinsonian and their caregiver to quickly gather information and to grow in the knowledge and understanding of their disease. In support groups you find wonderful people with compassion, courage, humor, and a desire to help each other.

You may have heard that support groups can be a depressing experience. Our response to that is that we try to be a positive influence to all of the individuals that attend our meetings and even to those that we interact with outside the meeting. There are people who do not like groups for whatever reason and that is their privilege. Also, people who come to a group and start comparing themselves to others are bound to have a poor experience. You can always find someone who is less affected or more affected by their disability. Rather than dwell on these differences, we encourage each person to share their triumphs and to learn how to handle their challenges.

There are other reasons for feeling negative about a group experience than comparing yourself to others. One of the primary negative influences of your experience at a meeting is that you are in denial. Denial is part of the grieving process we go through when we first learn that we have Parkinson’s Disease (PD) and, at first glance, it appears to be a wonderful mechanism to cope with the news. However, if you continue to stick your head in the sand and deny your condition and not accept the fact that you have PD you will miss out on all the joys of life that are still yours to experience.

To recognize and come to terms with your condition allows you to accept what has happened to you and you can take care of yourself, exercising, taking part in the daily activities you have always enjoyed, learning as much as you can about PD, consulting a movement disorder specialist and participating with him or her in managing your disease. In other words, take charge of your life as much as possible.

Living with PD does not mean you should limit what you do. You should live life to the fullest, just as you would without PD. Of course, as the disease progresses, you will find some limitations just because of the affects of the disease on the movement capabilities of your body. As you move about, you may find times when you need help. Tell someone that you have Parkinson’s Disease and you need help. You do not need to advertise you have PD but, at the same time, don’t hide the fact. Freely admit you have the disease, it is nothing to be ashamed of. By being in a support group, you can tell your story which may help somebody else, or you might hear someone else’s story and gain some help from it. Through this give and take you gain strength and courage and learn new ways to cope. No matter how long you have had PD, attending support group meetings should be beneficial for you. The earlier you start, the greater the benefit.



MagicHave you ever wondered who arranged for the speaker at the support group meeting? Who secured the meeting place, sets the agenda or makes the coffee? Who organized the cookbook printing and distribution or planned the event you went to. All of these things and more obviously don’t just happen; they are the work of volunteers.
Sometimes many of us feel that we have nothing to contribute. There are no requirements to be a volunteer other than the desire to give something back and by doing so make a difference.
The fact is, everybody can do something and we need people just like you to get involved. There are support groups to participate in., a board of directors to join, a newsletter to contribute to and events to organize. The true magic is in the volunteers.


So as a volunteer, what’s in it for you?  Besides helping to have a better run, managed, attended, interesting and helpful support group and Parkinson community, you will find that giving your time has other benefits as well. Everyone has heard the phrase “Giver’s Gain”. The term implies the age old principle that those who give will receive. This has never been truer than in the Parkinson’s community here in Hampton Roads. All of us that have been touched in one way or another by this disease can use the help, advise and support of others. We are all in this together and by acting together we can all benefit. So think about it. How can you help? What can you contribute? Call us today at 495-3062