For this week's Ataxia Profile, I will be introducing you to Adam Carter...
Adam is forty-five and has Spinocerebellar Ataxia type four. He was diagnosed around the age of twenty-three...after being referred to a Neurologist by his Doctor. Adam had gone to see his regular Physician several months prior...because his voice had started to sound rather "croaky" and his family felt that he should have it checked out. It led to a rare Neurological Disease...and although all forms of SCA are rare...some are a little more so than others.
Adam grew up doing the normal things that most kids do...which included playing soccer/cricket. He also participated in Rap music and Breakdancing...and became quite good at it, winning numerous local dance competitions. As he got older, Adam also began to work as a DJ at rave parties. Unfortunately, his symptoms began to appear just a few short months later...with a diagnosis of Ataxia not long after that. Initially, a specific type/number was not known...but later a more detailed diagnosis of SCA4 was given.
For many years, Adam tried his best to not acknowledge his condition or learn anything about it...because he found that the more he did the angrier he would become. He could no longer do those things that he had enjoyed...and he soon discovered that he was caught in a downward spiral of anger and depression.
Adam decided that he needed to get his anger and self-hatred under control...so he spent time seeing a Psychologist...and though it has been a long journey emotionally and physically, through the Psychologist and help from his friends he has learned to defeat most of the anger and frustrations that he was experiencing.
And, even though he may still have to work through those feelings of anger from time to time...he is much happier these days and has started to DJ again. What really makes him happy, however (and this is an unintentional piece of advice from Adam) is that he learned to accept his current situation...and not just accept it but adapt to it and make it work in his current life surroundings. He can also dance once more...thanks to an awesome wheelchair that has big wheels for getting around. He enjoys camping...which he finds easier with his new wheelchair. These two activities were things that he very much enjoyed before the Ataxia...and being able to do these things again has gone a long way towards soothing his anger.
The one idea that Adam would share with us is the thought that we are never alone. We can be a comfort to one another...and in ways and experiences with Ataxia that only we can know.
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Thank you for sharing yourself with us, Adam! It has been a pleasure to write your story...and to be able to share it with the wider community.
Well, that's another...and the final Ataxia Profile. Unless someone shares their story with me, there will be no more Profiles. I have enjoyed our time together. Take care my friends...
Jason
Thanks for sharing your story, Adam!
ReplyDeleteI'm sad to learn that you aren't planning to keep doing these profiles, Jason. I've really enjoyed them.
I’ve enjoyed them too! Thank you for being so open about your struggles Adam!
ReplyDeletei hope that my story is one that might help some people who are struggling with the anger and self hate that i did....some days i still do have these BUT i try to remember that im loved by many....and i know that im not alone anymore...
ReplyDeleteplease keep trying to post cause you doing such great work which then allowed me to tell my story...and others...
I remember our fun time's we had at doofs. You are amazing person and cherish our friendship thanks for sharing your story.
ReplyDeleteGreat to see your still enjoying the little thing you & I go way back to the Torana days & still remember those hammer pants lol.
ReplyDeleteYou have never been one to give up & will always have time for your friendship
Garty
Love ya Ads. Your my braveheart. Fierce with passion and a fire burning inside you x Josie
ReplyDelete