Darrin Rein is self-employed as an IT Consultant in Kamloops British Columbia. He has a rare disease called Spinocerebellar Ataxia (SCA), check out his blog at:
https://whatdawhat.blogspot.com
Explaining my condition to people is not exactly on my top 10 list. But if someone ever wants to know or understand, I am always willing to try and explain it to them. But understand there is a time and a place for it. I know a few of you like to look my condition up and learn a little about what it is. I don’t usually encourage that, but it is better than assumptions I hear. So lets clear the air a bit…
The first thing that I want to say is that I am pretty sure 90% of people that I know do not know the name of the condition I have. As a result of this, there is a lot of assuming. People say it’s like a condition they are more familiar with such as Parkinson’s Disease, MS and ALS. I think that is pretty normal to think that way? I also think it is wrong to do that because Neurological conditions have so many varying degrees of severity. I will have to admit when a complete stranger comes up to me and ask me if I “just had hip surgery” because I am using a cane and walking funny. I just say politely with a sarcastic chuckle say “No, I have _______ insert whatever condition comes to mind.” then I will have to admit I do get some pleasure in watching them pull their foot out of their mouth. I gotta have some fun, don’t I? Saying No, I have Cerebellar Ataxia just doesn’t role of my tongue very well and although I am getting used to repeating myself to people but why the hell would I want to say something that’s just going to lead to the question “What’s that?” Honestly though if you seriously want to know and have the patience to allow me to stammer my way through the explanation I definitely will Just don’t don’t put me on the spot, like in a room of people.
The second thing people want to know and often ask is “How do you treat it?” So allow me to answer with the short answer. “There is no treatment.”. There is no medication, or surgery that I know of. But maybe there’s someone out there who know more than me. I have been going through a regiment of physiotherapy, but I will be honest it doesn’t feel like it make any difference.
Are you in pain?
Generally, no. I am not in constant pain. At times I get some pretty bad headaches and I don’t get the best sleep as a result of it. If I am on my feet for a long time then sure, I can say, I get some pain in my legs and hips. But its more discomfort than real pain. Pain isn’t always physical as we all know. Frustration is by far the biggest pain I have. Not being able to do things that you could routinely do without hesitation. Not being able to rattle of a funny joke although I do try now and then. When I say something that sounded totally right in my head but I know you have no clue what I just said.
Does your twin brother have the same thing? At this point, I am the only one of 4 kids who won the gene pool lottery. So I am told that there is 50-50 chance of inheritance but if you don’t have the condition you can’t pass the condition on. I think one of the worst feeling is fearing that I passed the condition to my daughter. The condition is hereditary, as I have mentioned my mom has it and a few others in her family do have it in varying degrees, I don’t overly keep in touch with them so I am not sure how far they have advanced with it.
Well, lets leave it here for now. I do want to finish off by saying there are some pretty remarkable people out there and the support I get from so many of you is amazing! It blows me away. I wish there were better ways to thank you! There has been some rather unsavory incidents that have happened too, but Karma is coming for you! To the great people out there that help in so many ways, know that you I can’t thank you enough, even if I don’t always say it, just know it!
PEACE!!!
Darrin