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Finding help in Managing PD

Joan James

Perhaps you have heard people mention their Parkinson's support group, but thought that this was not for you. Maybe it makes you uncomfortable, or you think that it will be too emotional or upsetting. For some, this may be the case, but maybe the time has come for you to open your mind to something new.

At the time my husband was diagnosed with Parkinson's, I did not have a clue as to what the disease was, how to deal with it or what to expect. I began searching for these answers by calling my local hospital, Nyack Hospital, and found they had a support group for people with Parkinson's and their caregivers. I was sure that this would be the perfect way for my husband and me to learn about the disease and manage it together, but convincing my husband was a different story. He was hesitant to try it and agreed to go only after I promised that if he did not like it, we would not go back. Luckily, one visit was all it took for us to know that we had found a family!

Immediately, my husband was made welcome and put at ease by the other people with Parkinson's in the group. It was also ideal for me because the combination of support for patients and caregivers allowed me to meet other people who were experiencing the same things we were. I received a wealth of information, tips, stories and an overall feeling of friendship and understanding. I quickly discovered that everyone with Parkinson's is different, and that we needed to approach living with the disease in a way that matched our own unique needs.

My husband and I were lucky to have found a tailor-made support group on the first try, but you should not give up if the first support group you visit is not what you are looking for. Make sure you feel comfortable with the people in the group. If you are facing the disease with a partner, you may wish to find a group like ours that includes caregivers. Each group offers something unique. Some may be focused solely on sharing and discussing experiences, while others include speakers and special sessions.

Also think about how much time you want to spend in your group. Some people prefer a monthly, one-hour meeting, while others may have the time and inclination to seek something that involves them more frequently. Our support group meets for two hours every week. It offers a physical therapist at each meeting to work with the members with Parkinson's, and a speech therapist once a month. The exercise sessions for the people with Parkinson's allow the caregivers time to meet separately. For me, this is a vital part of what the group has to offer. We caregivers have time to share our problems, discuss possible solutions and receive the emotional support that is so necessary in order to continue our often difficult but essential tasks.

A support group that offers educational speakers and activities may help a person feel proactive in treating his or her disease. Our own group also plans informational activities; for example, we often work with the local Department of Aging and invite guest speakers to talk about Medicare benefits and services available in our county. Other speakers have included physicians, a dietician, a dentist, lawyers specializing in elder care and a representative from a medical supply company showing equipment helpful in Parkinson's. Sometimes we use the second hour for light entertainment. We have enjoyed square dancers, a Tai Chi demonstration, a folk singer, special luncheons and more! When researching support groups, ask how the time is spent to determine if the activities are right for you.

A great way to band together as a group is to hold a fundraiser or awareness event. We enjoy planning an annual "Parkinson's Walk," usually held in late May. This year, we donated more than $3,500 to the Parkinson's Disease Foundation (PDF) for its research, education and advocacy programs. It helps to know that we are making a contribution not only to one another, but also to the scientific research that is desperately needed to find the cause of and a cure for this disease. If you are considering planning an event, contact PDF and ask for information and guidance.

All of the extras in our group make it special, but the most important things offered are understanding and caring. If you can find this, you will see that being a part of a support group is more than finding support, it is also about finding a family. For more information on organizing a support group, or if you live in the Nyack, New York, area and would like to inquire about joining our support group, please contact me, via PDF, by emailing PDF also maintains a list of support groups around the nation; to find one in your area, email or call PDF at (800) 457-6676.

Joan James is Co-Chair of the Nyack Hospital Parkinson's Disease Support Group in Nyack, New York.