Support group

A support group is just that… Support! You can’t get the support you desire if all you do is attend and observe in silence! You get out of it, what you give in to it.” I kept hearing, ‘ Find a support Group.’ and I actually tried a group once but the exercises they had us do were not realistic. That is when I realized I had lost the ability to skip.

Recently, the MJFF started a Parkinson’s Buddy Network which I joined, and the very first person I reached out to, told me about a support group which meets every Wednesday in the villages, at a rec center just 15 minutes away from where we live., I have attended four times now, and I love it. The leaders always have something to share with the participants. This week it was providing information on specific studies that are currently enrolling PD patients to participate in in Gainsville. When the group have convened, they begin by participation in a drumming activity. They stand and pledge allegiance to the Flag. Then we are led in a ten minute sitting stretching routine and then we dance for around 40 minutes. Two or three ladies demonstrate the planned choreography to go with each song.. We have done the rhumba, and learned a line dance, Marches, and songs like YMCA incorporating the moves to spell. And they work on voices: shouting, singing loudly and counting, while dancing. This week, they had 16 chairs set up 1/2 on each side of a volly net. So After dancing we transitioned to playing chair volley ball with beach balls. The competitive spirit was lifting many of us off our chairs. No score was kept and they had two balls so while the observers, mostly care givers, were retrieving errant balls the second ball would be put in play.

I continue to learn new things. I feel gratitude for my many blessings.

The support group has a weekly newsletter, and I have learned they have 3 meetings each week plus a golf game one morning a week. One of the meetings is stretching, exercising, Big & Loud… held on Sunday . so we won’t be participating in it, or playing golf. The Monday one is for caregivers.

From the Newsletter: The importance of the 3 key benefits of Support Groups!

  • Improving understanding of a disease and your own experience with it. 
  • Getting practical feedback and treatment options. 
  • Gaining a sense of empowerment, control, or hope!
  • I don’t remember where I found this sales pitch for Support groups:

    “It is important that those of us with Parkinson’s learn as much about this disease as possible. We use this knowledge not in helping to find a cure but in helping us cope as we move about in our daily lives. Once we have found some new knowledge. We should not keep it to ourselves. If we have found a way to cope with the disease we owe it to others to pass this information on. Attending support groups is a way that we can do this. A way that we can find out, that we are not alone!”

    “I have been lucky to attend various support groups and have had the privilege to meet up with other Parkies across the country. One thing jumps out at me, those who interact in these meetings seem to be coping better with the disease, both mentally and physically, than those that don’t! They interact better with Parkies and Non Parkies a like! As hard as it may be, you must interact! If you have trouble expressing yourself to those of us with Parkinson’s, how hard must it be to express yourself to those that don’t? People like friends and family and especially your caregiver and medical support team! The more you partake in the support group, the more you can learn about different techniques in how to live with Parkinson’s and easier relate your disease to others. By sharing with others, you will be surprised to find out just how much in common you have. You will find out that what you are going through is not new. Somebody has or is going through it as well. Your participation will most likely encourage others to interact. By doing this, conversations start to flow. New ideas and solutions will seem to come out of nowhere! This is what you were probably looking for when you opted to attend a support group in the first place! This knowledge is a stress reliever!”

    Author: suerosier

    In May of 2018, I was diagnosed with Parkinson's. After researching, I believe the symptoms began to manifest themselves years prior to last year. The purpose for my blog is to share what I have learned (with an index) to save others time as they seek for answers about, symptoms, therapies [and alternative things to try], tools I use, Parkinsonisms, recipes, strategies, clinical studies, words of encouragement or just enjoy the photos or humor.

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