I administrate a support group of solely people with early stage dementia. We don't have people NOT living with dementia helping with the group it is just us. I have heard at times from a few of the members that when they told their physicians about the group they were warned not to participate. This has left me totally perplexed when I have heard this. What are they afraid of, I sit and ponder? Is it a control issue that scares them? Do they fear we are making a suicide pact? What they dig up for a fear is beyond me. If these unenlightened professionals knew the truth, they would know that it is a group of people experiencing what I consider to be the worst possible disease. Why the worst? Because those of us that are aware of the process happening know that we are slowly losing the most precious thing in life, our brains. That being said, it is the most wonderfully supportive group I have ever been associated. Everyone is kind to one another and totally understands in a way the non-sufferers could never understand. People do not really even have to correctly say what is going on and it could be kind of a jumbled mess of writing and even through that the majority get the gist of what someone is trying to say. It is truly amazing.
I am very proud to be one the founding members of a new organization that is pulling the efforts of a number of people all living with dementia under one organizational roof as it were, called Dementia Alliance International. The live virtual support groups we are doing through that group are done with a software called Zoom. It is a web conference software that seems to be fairly easy for those living with dementia. It allows people who otherwise feel isolated to be in a "virtual" group every week and talk about what is going on with them. These groups are amazing and something we hope to expand greatly. Back to the support group I administrate, we do some informal virtual chats of anyone interested from that group once in a while, no scheduled basis at this point. But someone I have gotten to know in also that virtual world is a man named Chris Roberts who lives in Wales, U.K. Chris has developed an unbelievable talent for poetry in his Young Onset Alzheimer's Disease. Artistic talents developing or blossoming with dementia are not totally uncommon but Chris seems to have such an art for how the words about our disease flow from his fingers. Here is a recent one that I am very fond of:
My memories waver on the edge of reason
Trying to be normal is no longer easy
A reprieve would be nice for just one day
But As I wait it never happens that way
Younger and younger my brain starts to grow
My emotions jumping to and fro
My limbs they tremble when I walk
My voice it waivers when I talk
All the inner pain no one can see
Stops myself being me.
what you can't see !
His poetry is a rare but beautiful thing that can come from these diseases. If you would like to read more of his work, please visit his blog.
Until next time, be kind to one another.
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