Travels with Lewy – Support Groups

As we travel in the Lewy Roller Coaster, we often need help along the way. In my opinion, the best help other than doctors is support groups. No question is too small to ask, every question is valuable if it helps someone feel more at ease with all the highways and loops and spins of our beloved roller coaster. I have 3 groups that I attend when I can, the first group is run by Maureen and simply called Lewy Body Dementia, the second group is run by Pamela and is for Lewy Body patients only, and is called Lewy Body Dementia Association, To get into this podcast you need to join the group and have a Lewy Body Diagnosis. This podcast is very informative and led by Pamela. The last one is the one I go to the most and that is called The Lewy Body Roller Coaster Podcast Group. The Group is run by Curry and Linda. This group is more like a family to me now. We have gotten to know each other and the group is more of a family chat and we accept any new folks as a member of the family.

What can support groups do for me or anyone? First they make me laugh which is very important. Then they make me realize I am not alone and the meeting puts faces with others who fight this war along side me. In the last group, I think we have 13 countries represented and many states in our Grand Union as well. We look out for each other and we offer advice, make each other laugh and most importantly we remind each other we are not doctors. We just offer what works for us.

Why are support groups so important? Mostly it is for the comraderie. We know there is someone there that has our back when times get tough and we need someone to talk to, cry with, or yell at, that they are there. When times get tough and we start slipping down the Roller Coaster, we will always have a friend to chat with. I can’t imagine doing this without a support group and my family supporting me. Each of us has down times and having help is a comforting feeling. If you are doing this alone, please find a group. There are many out there. Just look up Lewy Body groups and you will see many to choose from there. Whatever you choose, may your choice bring you some solace and a little laughter. Lewy is the worst disease I have seen and it takes an army to fight it.

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