The SoCal TM support group got together on August 24, 2013 at the Dayle McIntosh Center in Garden Grove, CA. The Dayle McIntosh Center was gracious to let us use a large conference room for our meetings.
Fifteen people attended the meeting, 13 of whom were diagnosed with TM. One person drove from Bakersfield, at least a 150-mile drive, to join us. Another drove 70 miles from Encinitas. It was a great meeting and we discussed some topics that were really interesting and opened at least one person’s mind to the benefits of a support group. The mix of people that attended ranged from a former Olympic bobsledder, a librarian, a college professor, a nurse and of course the rest of us that no longer work due to TM. TM hasn’t stopped us from making the most out of everything in our lives.
Our meeting might seem long to those who don’t attend but at the end of four hours (yes, four!) people are still willing to stay. We started the meeting with a potluck of great food, conversation and catching up. Then we went around the group and shared our individual stories. Some were new people sharing their stories and others provided an update. Each person has a different story and each was diagnosed differently. Each person is affected differently, some are in wheelchairs (me for one), some use walkers or canes and others are able to walk unaided. Below are some of the issues we discussed at the support group meeting.
Pain We were all different in our pain and pain levels, but the discussion was lively. Almost every one of us has some sort of neuropathic pain. We talked about how this is such a hard concept for other people to understand. How can we look normal and have this type of pain? How can we have no sensation and have numbness, but still have pain? Many of us have experienced the attitude from others that “it must be in your head” so get over it. We discussed the use of medical marijuana for pain control. Several people have tried it, some have issues with the fact it is illegal (federal government), and some that tried it found it to be a great help.
Fatigue Everyone in the group shared the experience of fatigue. Not the kind of being tired, but the kind that will just suddenly come over you and you seriously need to lie down. Many in the group try to push through it because of the attitude family members and friend have towards us. We talked about how we hear things like “the job is exhausting for all of us, not just you…welcome to the club”. When we can’t attend a family gathering, a get together with friends or just about any event because of fatigue, we are accused of just using it as an excuse. Fatigue is something we understand as a group but have great difficulty getting others to understand.
This was not a gripe session positive influences come out of this wonderful group of people. We have made some life long friendships. We have gained understanding that we are not alone with this monster called TM. We also share many laughs and tears.
We talked about depression and finding the right doctor. Many of us have just quit going to a neurologist. We find that our family doc can treat our symptoms just as well.
Among many things we discussed, we talked about was what many of us called “invisible disabilities”. Some of us are constantly challenged by the fact that we look normal. What could be wrong with us, why are we using that handicapped parking space? This is when using a wheelchair or a walker has its benefits. We don’t have to justify that we are disabled.
At about 3 PM the group was surprised when Debbie Capen, the Secretary of the TMA and a Board Member joined us! The whole group welcomed her. Debbie and I started the group many years ago. We worked hard before the first meeting and became BFF’s. Debbie spent the night at my house and we got to catch up.
My thanks to Joan, Mona, Jan, Rick, Allen, Bob, Bill, Denise, Midge, Teri, Kathy and Ray, Nichole, and Debbie for making this a terrific meeting.
If you want to read how our meeting had an affect on one of our members, Allen Rucker, read the Support R Us blog published in September 2013!
~ By Cindy McLeroy