Hi I’m Brian and this is my story…
I was diagnosed in 2010 with Cerebellar Ataxia type 3 (sca3) it’s genetic and another family member has the same disease.
My first visit was to my GP then a referral to the geneticist to get my final diagnosis. I was a roofer for 8 years before my diagnosis, my walking started feeling a little off which was what lead me to get it checked out.
I started out with a cane, which motivated me even more to do everything I could to slow down the (inevitable outcome) I didn’t care as I was determined more than ever in trying everything I could to find more ways to improve my quality of life…
I wasn’t going down easy, as long as I knew I did everything I could that was my motivation to push.
2016 – I went to California I had a stem cell therapy treatment I felt great. Keep in mind the disease was still in the beginning stages.
2017 – I went to Vancouver for my 2nd stem cell therapy treatment not effective this time unfortunately, still determined.
2018 – I went to Connecticut to get a fitted for my balance wear vest to help with my balance. At that time I could walk with some swaying and a little support here and there. I also did 7 consecutive weeks of intensive physio day after day, week after week while using a walker I persevered. I was getting arrived soon and I still was trying. I wanted to walk down that aisle with ease as best I could with the help of my balance wear vest.
2019 – I got fitted for leg braces for more support for my legs. Between this year and 2021 came my wheelchair as I was finding it really difficult to use the walker.
2022 – I’m currently in a wheelchair and all the other stuff that comes with the disease, aches, pains etc.
IN CLOSING LET ME LEAVE YOU WITH THIS:
With research taking off to new heights and heightened advocacy for the Ataxia community the fight is not over it’s just the beginning.
I DO BELIEVE THAT ONE DAY: There will be that one phone call one day that will change my life and many others. Someone, somewhere that hears our stories and see’s my story (someone like researchers or chemists) “Saying we found the answer, we’ve found a cure!”
I’ve found that having great support systems like: Support groups, friends and family really helps. People that can advocate for you to be the voice that often goes unheard.
Never be ashamed we are people too, we have many gifts and talents and are creative. Just because we don’t do things like everyone else doesn’t mean we can’t find a way that suits us!
Don’t lose hope!
LET’S JUST LOSE THE ATAXIA!!!