There is no denying that Parkinson’s disease (PD) is an awful and debilitating illness that makes life much more challenging. Sometimes, whether we like to admit it or not, we need help. A support group can be an excellent way of receiving the help that you seek.
As someone who used to shun support groups, I decided that I would develop my own style of group. I wanted a group where patients and care-partners could come and feel empowered and educated. A support group should not leave you feeling helpless, alone, or without hope. Our group shares information about new developments in the world of PD as well as what is working and what isn’t working. Often, group members suggest something to try or a tweak that maybe those seeking a suggestion hadn’t considered. In my mind, this is the model of the kind of support group that can really benefit both patient and care-partner.
Here are some suggestions to starting a support group that can empower your participants:
- Educating others and giving alternatives provides an opportunity to change one’s situation for the better.
- Maintaining a positive and hopeful spin on your meetings not only keeps the meetings upbeat but can make for a more united and cohesive group.
- Sharing doctor information can be one of the best ways to find the right doctor or neurologist for you.
- Sometimes, just going to a support group reminds you that you have more options than you thought.
- A support group is what the members make it. Like any group, the members keep the group alive and with care and gentle adjustment from group leaders to keep the meetings on track, a support group meeting can be a very healing and beneficial tool to contribute to your healing.
Support groups are just a place for people to commiserate and belly ache, or at least that was what I thought they were. I had attended a group for a year or so, but inconsistently, for that very reason. I was finding that meeting with the group was having the opposite effect of what I had hoped to achieve. My intention for going to these groups was to learn, to be inspired, and to come away with a better strategy of how I might live my life with Parkinson’s Disease. Rarely, did I get that satisfaction. I don’t blame the leader or the group, the meeting just wasn’t ran that way and the patients in the group weren’t in a place for my type of meeting.
Some support groups are instant successes and others may take delicate pruning. The support group is an ever evolving entity as it rotates new as well as older members. I have seen Parkinson’s Disease support group members range from the ages of 25 to 75 years of age. A support group binds everyone in that meeting for one unified purpose that transcends all cultural or social labels. Rich or poor, famous or not, each of us is there to learn, share, educate, laugh, strategize, congregate, and gain a new perspective.
My vision for a support group came from what I selfishly needed. I wanted to develop a safe and welcoming environment where the group felt comfortable to be at ease enough for 2 hours to be themselves. I saw this support group as an opportunity to develop true meaningful dialogue between patients and even carepartners. I take great joy and no credit for the amazing transitions that I continuously see in members. Once quiet members who kept to themselves or who had little or nothing to say, now take the initiative to embrace new members in need and are always willing to add thoughtful and meaningful commentary. Watching the group grow and take shape has been a labor of love.
I must admit, I think the group is 8 years old but it could be slightly older. On the evening of our inaugural meeting, my wife, Angela, and I had no idea how many people to expect. It was a cold damp March night and I was sure no one would come. Much to my amazement, one couple showed up and I am so proud to say that they are our dearest of friends and remain in our support group after all this time.