It's Ataxia Awareness next week and usually around this time I do a Q & A. I don"t really have many questions but, I got some. So I'll just add a few things of my own. All the things I say are to do with me and me only. Everybody with a type of ataxia is different. This is just me.
QUESTION 1:
Are there different type of Ataxia?
ANSWER:
YES. I couldn't even begin to list them all. I have Spinocerebellar Ataxia (SCA). There's a subtype usually that ends with a number. SCA1, SCA2, and it keeps going on. As well, there is Sporadic Ataxia, friedreich's ataxia, cerebellum ataxia, and it doesn't stop there. There are Ataxia types I can't even spell or say certain types, and no disrespect to those people living with the condition.
I don't have a subtype, not for lack of trying . But after awhile of trying, I just gave up trying to find out. I did a few bloodtests and saw a few different Neurologist's and eventually it just didn't matter to me, I just take things as they come. Ataxia isn't really a condition, it's a symptom. So we are a bit different with those symptoms, but we all have similar issues.
QUESTION 2:
Is there a FAQ section you can link too?
ANSWER:
YOU BET! There are tons. The best resource is to ask me or whomever but this is the Canadian version, https://lacaf.org/en/ataxias/frequently-asked-questions-2/
National Ataxia Foundation is more American but both are really good resources. https://www.ataxia.org/
Question 3:
What family of conditions is ataxia under ( ie. ALS, MS, etc)?
ANSWER:
There's no exact 'right' answer here in my opinion. Many would say Parkinson's Disease, some say Multiple Sclerosis (MS), not many would say ALS although it could be in that group. I tend to lean towards Parkinson's Disease and MS but I think there's a ton of personal opinions.
QUESTION 4:
Do you inside yourself feel normal but because of the condition the functions of movements speech etc are inhibited?
(If that makes sense?)
ANSWER :
Ummm? Yes and no? Was that a politician answering? Inside myself I think I feel "Mostly normal', I have many of the same issues of an abled bodied 'normal' person of my age. If I'm sitting alone, things feel pretty normal and I'll do something stupid, such as getting up and try to walk, try and blurt something out because it's funny and sometimes that quick response is needed. Speaking
Issues are much more bothersome to me, probably more than physical mobility. Neither is ideal, and both are down right cruddy. But my poor speaking bugs me just a little more. I have good days and bad days. I'm probably at my best from 10am - 2pm. But that is not set in stone. Some days are better and some days it worse. Everyday is different.
QUESTION 5
How much longer do you think you'll keep working and driving?
ANSWER:
I hate the answer, 'I don't know'. But after a while six months or a year, seems like such a generic answer. I generally say, as long as I'm able. I think I've surpassed that on numerous occasions. Driving, is definitely not my priority these days. I can still legally drive but I gotta be honest, I don't like it and if there's some body else who can drive, I prefer going that route. For me it's a very A-B, I do it, I just rather not especially if it's crowded or far.
That's all the questions, oddly, none were from me. So maybe I'll save those for another blog. Typing these blogs out is not ideal for me anymore. That's not a fun reality. If you have question or want more elaboration, just let me know and I'll try and answer it. Heck, I didn't even talk about my crappy vision. Next time!
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