Many Parkinson’s fighters find support groups tremendously helpful in coping with the everyday realities of having the disease. While a support group doesn’t exactly replace the standard medical care, it can make an individual feel less isolated as he/she makes connections with others facing similar challenges.
Since such groups come in different formats (from large, formal meetings to smaller “living-room” get-togethers), it is okay to be confused and not know which one will benefit you the most. Worry not! Here, we have a step-by-step guide to finding a Parkinson’s support group that’s right and equally comfortable for you.
1. Do your homework
If you live in a metropolitan area, contact an organization devoted to Parkinson’s. Otherwise, you can always ask a fellow Parkinson’s fighter. If that too doesn’t work out, ask your doctor or nurse care to recommend a support group for you. Ask your caregiver to search the Internet. There are many online and telephone support groups for Parkinson’s fighters.
2. Understand different formats
Support groups may be formed by a layperson with Parkinson’s, the nonprofit organization, advocacy organization, or a health clinic. So naturally, they come in a variety of formats. They may be led by professional facilitators, such as a nurse, social worker or psychologist, or simply by group members. All you need to do in the beginning is to ensure that the group is registered and has been running successfully at least for the last 3 years.
Some groups are educational and structured while others very informal, emphasizing more on emotional support and shared experiences. The group leader of an educational group often invites a doctor, psychologist, nurse, or social worker to talk about a topic that caters to the group’s needs. On the other hand, informal groups let you share your experience without being judged.
Introspect to know what exactly you want. Ideally, if you were recently diagnosed with the disease, you will benefit more from joining an educational group that offers helpful information and resources on Parkinson’s. If your disease has progressed rapidly in the last few months, you may probably like to join an informal group to share your feelings.
4. Ask questions
Each type of support group has its own advantages and disadvantages. Asking below mentioned questions before joining a new support group will give reassurance:
- What are the fees?
- What is a typical meeting like?
- What is the meeting schedule?
- Is there a facilitator or moderator?
- Is a mental health expert involved with this group?
- Does the group have established ground rules?
- Does it meet any cultural or ethnic needs?
5. Try and test (if possible)
Ask if you could attend a few support group meetings to see how you fit in. During this time, evaluate the support group to make sure it meets your needs. Some fellow group members may be pessimistic about their future with Parkinson’s, while you could be looking for hope and optimism. Don’t feel obligated to keep attending the group if a group dynamic is upsetting. Don’t worry, not all support groups are a good match for you.
6. Start your own
There are chances that you may like the first group you find in your area. In that case, would that be worth looking relentlessly for the one that suits you better? So, if you are unsatisfied with the available options, start your own. After all, the purpose of you joining a support group is finding comfort in the company of other fellow Parkinson’s fighters. Ask fellow support group members to join you for evening snacks and discuss the possibility of having regular meetings.
This Blog is contributed by Dr. Deepak Kr. Nain. He is a certified therapist who specializes in the field of rehabilitation. Deepak possesses a clinical expertise in prescribing the best solutions to help people with neurological disorders such as Parkinson’s disease, Stroke, Multiple Sclerosis (MS) and Guillain-Barré Syndrome (GBS).