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Hi, my name is adamskis!

adamskisadamskis Member Posts: 64 Pioneering
I am constantly bothered by Ehlers-Danlos syndrome, which seem to have shared many of its fun traits with me.
as a male in his 50s I am finding that it is affecting me more and more. I know it isn’t degenerative as such, but various elements seem to be moving to the fore as tears tick on.
five years ago I was competing in triathlon, now I can hardly walk without a stick, and , distressingly, recently have had days when walking just wasn’t happening.
I was blessed with various of the heart conditions...pacemaker installed... but they are not healing any time soon, but the big ones for me (other than hugejoint and bowel issues) has having cerebral fluid leak and a bunch of TIAs that left me with some fairly reduced cognitive ability, focal epilepsy, and severely restricted peripheral vision and almost no colour vision. These resulted in losing my driving license, job, and almost all confidence.

i am learning to make guitars, clocks, and various other wood projects...as I can do these when I am okish, and they will be there waiting to be finished.

i would like to use this group to have somewhere to feel normal for once.

Good to be here, and thank you for listening.


  • chiariedschiarieds Community Co-Production Group Posts: 9,044 Disability Gamechanger
    Hi @adamskis - Welcome to this great community. I have the hypermobile type of Ehlers-Danlos Syndrome + a neurological problem. It's great to meet yet another EDSer, as there are several who've joined this friendly & supportive group already. Our 'rare' disorder is becoming all too common!
    It's great what you're doing with your wood projects. Good for you.
    Most people here have a disability, or a close relative with one, so others will have some understanding. We all learn more from each other, & often, altho we have different disabilities, we have some things in common.....pain, fatigue, etc.
    If you look into our 'Coffee lounge' there's a 'Kaleidoscope' thread where members show their craft projects. Perhaps you might share yours?
    I hope you enjoy being a part of this community; it sounds like you'll fit right in! Please join in with any discussions, as well as chatting here. :)
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @adamskis and welcome to the Community.  It's nice to meet you and thank you for sharing with us.  I see that already you are in great company with @chiarieds, who amongst other members, will provide you with valuable support.  We are a friendly bunch of people on here so anytime you fancy a chat then please do as there will always be someone on here to listen.  

    The fact that you make guitars and clocks is fascinating!  I'm sure you enjoy it.  My husband enjoys making wooden objects also and has made some coasters and plaques.  I look forward to seeing your works of art in the future if you would like to share your pics of them.  

    I'm sure you will make a very valuable contribution to the Community and I look forward to seeing you on here.  If we can be of any help/support to you at all then please just let us know.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • adamskisadamskis Member Posts: 64 Pioneering
    Thanks both of you, I will be sharing my projects, this is a clock I am making for my mum
  • chiariedschiarieds Community Co-Production Group Posts: 9,044 Disability Gamechanger
    Hi @adamskis - Thank you for sharing a photo. Your mum is going to have a lovely unique clock! :)
  • adamskisadamskis Member Posts: 64 Pioneering
    And my dad will soon have a cigar box guitar too!
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    They are wonderful, @adamskis!  You clearly have a gift there.  I'm sure your parents will love their gifts.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    They're great @adamskis!

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