A friends write up about one of my poems

This was published by a good friend of mine who also has young onset,
he is a founder member of of http://www.dementiaallianceinternational.org
Johns blog :-

A friend with YOAD and his new found way with words.
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.

Please understand,
what you can’t see !

© chrisroberts

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.

John Sandblom
Here is a link to john’s blog


2 thoughts on “A friends write up about one of my poems”

  1. Hi there,

    I am a fellow poet and just came across your blog – sorry to see you are in the same position, but if you are anything like me I hope your website provides some sort of outlet…

    I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now.

    I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well – http://dementiapoetry.com.

    The blog is an honest account of my experience of caring over the last few years in poems – some silly, some exasperated, some happy, some sad – of my last three years caring for my mother-in-law, who suffers from Alzheimer’s disease, and is aimed at helping to support other caregivers in a similar position.

    If you would be happy to link to me, I would gladly return the favour!

    DG x


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