‘Everything is an obstacle when you have Ataxia! But I will keep knocking those obstacles down!’-DR
Born and raised in Kamloops, BC, Darrin Rein is a professional computer geek by trade. He also writes a blog and enjoys watching and playing sports. But what makes Darrin unique is his medical condition, Spinocerebellar Ataxia, something he has been living with for years, though his formal diagnosis was recent.
If you are like me, you may be asking, ‘spino – what?’. Well who better is there than Darrin himself to explain this somewhat rare and hard-to-diagnose condition?
“My condition specifically, Spinocerebellar Ataxia (SCA) is one of the more common forms and it has over 40 different types. As of now I don’t know specifically which I have and until recently I didn’t even know that they categorized them. I intend to find out!
There is no cure for any form of Ataxia. There is genetic testing that is used to determine which type you have.
The disease presents itself differently for everyone and at different ages. Some people are confined to a wheelchair while others can manage with walkers or canes. Speech is usually slurred. It is basically the deterioration of the most basic of motor function. If you didn’t know most would probably think we are drunk out of our minds.
The condition is genetic. In my case I inherited the disease from my mother. I know of one other sister who has the condition and a couple of cousins who all live in Saskatchewan. I have three other siblings, one of which is my twin brother (not identical) who are older than I am but none of them are showing any symptoms. So I guess I hit the gene pool lottery!
Apparently there is a 50 percent chance of passing the disease on, but if you don’t pass it on, you can’t pass it onto your children. So naturally my biggest fear is passing the disease onto my daughter (age 23).
The limitations suck! I used to love snowboarding, golfing, mountain biking, and hiking. I lived and worked at Sun Peaks for about four years, and I still consider it my home away from home. I no longer have the balance or coordination to do any of those things. I can’t run or jump. Stairs are my enemy. Getting up is still possible, and getting down works but I just go very slowly.
There are a lot of us who have serious visual problems with Diplopia (double vision) or nystagmus (uncontrollable eye movement). I can still drive, but I got a feeling that will be over in the next year or two.”
Despite the many challenges he faces each and every day, and the slow, unpredictable loss of activities he once enjoyed, Darrin seems to be positive. He is motivated to spread awareness of the condition. According to his research, Ataxia is not well researched and statistics are far from clear.
“We do not have access to a medical registry with patient information but according to some scientific estimates there could be 16 000 Ataxia patients across Canada. That’s like 2%. It makes me wonder how many cases out there are going undiagnosed. Many people get misdiagnosed so this really brings me back to awareness.”
For Darrin, raising awareness means sharing his story on his blog (address linked at bottom) and participating in MS fundraisers and walks. Why MS? Because according to Darrin, the symptoms of MS and Parkinsons are very similar; Darrin feels connected to those living with these diseases and wants to help advocate for them too.
“The blog is more of an outlet for me, I don’t consider myself a writer or anything remotely close! It used to be for friends only, then I started conversing with others online worldwide who have a similar condition and they want me to make it public.
The one thing I would really like to do is start a conversation about this condition, but it never ever goes that way. I often get this feeling that people who read these blogs must think I’m an attention seeking whore. Nobody has ever said that to me, it’s just how I feel.
Lately, I have done more research than ever, and I have joined a support group online which was suggested to me. Since joining the group I have learned so much just about my SCA and I hear from others about their triumphs and obstacles.
One of the things that is repeated in the group is awareness. The awareness out there needs to improve. Try going to an ER and telling the triage nurse you have Spinocerebellar Ataxia? Well as you know clear speech is not our forte.
My condition can often be misdiagnosed for MS or Parkinsons disease. Many of the symptoms are the same. So I stand with everyone who is battling with MS and also stand with anyone who has a debilitating condition/disease whether it is neurological, spinal or not.
I understand the struggles that you all deal with every day, the frustrations of a body that does not want to comply with the simplest of tasks. I believe that everyone who struggles every day needs to be recognized.”
‘Everything is an obstacle to people with Ataxia and we just need to keep knocking those obstacles down until everyone listens. Keep on fighting!’-DR
To connect with Darrin, read more about this condition, or contribute your own experiences, please check out his blog at https://whatdawhat.blogspot.com