Meet Darrin Rein. He was diagnosed in 2018 and as yet doesn’t know what type of SCA he has.
Hello Everyone! I am Darrin Rein.
I am Darrin Rein, I am 47 years of age. Currently, I own a small one-man show IT consulting company called RhinoTec Computer Services. I live in a small city about three hours from Vancouver in the interior of British Columbia called Kamloops.
I have Spinocerebellar Ataxia (SCA). My subtype is unknown at this stage but should find out later in September. Like so many of us I get frustrated and annoyed by the fact nobody knows anything about SCA or any form of Ataxia so this is my way of putting some awareness out there.
My condition has several symptoms all of which are related to my basic motor skill: very poor balance, horrible visuals issues, mostly diplopia at this stage, and impaired or slurred speech.
I am a former snowboarder and skier since I was very young. I got my daughter and her stepbrothers into it and even their mother and it was definitely a way of life for us. I was officially diagnosed in the Fall of 2018 however I ignored my symptoms for at least two years always making excuses not to get it checked out. But I knew as my mother had the condition as well. The ultimate experience for me would be able to have a chance to snowboard with my daughter and all my friends that I have snowboarded with in the past regularly at Sun Peaks. I do not handle the cold as well and obviously falling is my biggest paranoia now but I miss just hanging out with those people so much. I still work as much as I can and a large base of my clients is still at Sun Peaks so I am still around the community up there regularly. My biggest goal is just to drive awareness of my condition because it is so rare that even many doctors are not aware of it.
We need a cure even just a treatment!! At the end of the day people with disabilities of any kind hidden, visible, mental, or physical are all on the same team. I have kept a blog of my journey for over a year now and encourage you to look through it to get a better sense of me and my journey. I have also done a few write-ups in local media which I have also included.
Follow my story at http://www.rhinotec.ca/takecharge/blog
Technically Forty-five (I am forty-seven now). It is kind of a long drawn out story of getting the runaround. Most of it is outlined in my blog so if people follow me through my social media most of its there. The diagnosis I got was Spinocerebellar Ataxia, there was not really much to doubt, as my mother has it and out of four siblings (I am the youngest and a twin), I won the gene pool lottery! I was diagnosed locally for SCA but at the time I did not know there were subtypes and I really didn’t get the feeling like my local neurologist care. My current GP gave me a referral to a doctor in Vancouver which is about 3 hours south of Kamloops at the University of BC and I had my bloodwork sent to Finland and hope to find out at the end of this September.
I still work as much as I can. I am lucky in the sense that only about 30% of my work is physical. I work in Information Tech as a consultant for myself. This next year is going to be interesting as I have to do a lot of driving and although my license is still good my next renewal probably won’t be a pass. I lived at Sun Peaks Mountain Resort so I golfed, I hiked and occasionally biked, the winter was my time I lived and loved to snowboard. The whole family did and it was definitely was our thing. Of course, I was into any computer-related as well. I am a big TV and movie buff still and until this pandemic, still enjoyed going to the movies.
I work – probably more than I should, but I definitely like being useful even in this uncooperative body. Aside from the fact my vision is horrible it still feels like the one area I can be a contribution. I love playing poker (actually I like to gamble) although I don’t talk much about it as it has gotten me into enough trouble in the past. I still play and have met some really great people over the years. But as my health declines so do my games.
I haven’t found one thing that is helpful but being around the things that I enjoy does help keep my spirits up. I can’t snowboard anymore but being at the resort is my home away from home. There is a few friends that I wish I could hang out with more, definitely miss that.
What lessons have your disability taught you…Or what lessons are you working on that will likely improve your everyday circumstances?
I have lots of lessons still to learn but patience is probably the biggest one. Finding different ways to do things that we all took for granted before. I love the fact that this has introduced me to a world of people I would have never talked to.
I am by no means some great advocate for our condition but I do keep a blog and do publish much of it online as well as I have written some articles for local media. I don’t really even consider myself a writer and I am sure my grade 12 English teacher probably agrees with that too. But I do have an honest “in your face” way of writing. It is more therapy for me. I was shortlisted to be on a TV show for disabled people this past winter but once COVID kicked in, that opportunity was canceled. The last I heard is that they might try again – that was in April. There are probably things that I forgot to mention and others will be wondering why I didn’t mention them.
I think I have said this one too many times lately but I am great at giving advice but terrible at taking it. Probably tell everyone I know to keep their chin up because things have a weird way of working out. It’s a tough world out there so don’t sweat the petty, pet the sweaty.
Thanks, Darrin Rein for sharing your story!
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