I got my genetic results awhile ago and the all the types of genetic ataxia’s that can be tested for in Ontario came back negative. I’m ok with not knowing the exact genetic cause of the cerebellar ataxia because I would rather not know how it will progress and my estimated life span. Not knowing will hopefully keep me positive and I will do my best to keep living a happy life everyday!
That sounds good logic Adam. Take faith in the fact that I am 72 in November and still walking reasonably well with aids.
I did get to using 4-wheel rollator indoors but neuro physio has encouraged me to manage without it aids indoors.
Stay strong and best wishes :)
You Rock Adam!!!
Well done on the positive attitude!
I was originally diagnosed with sporadic ataxia like you. (Unknown origin) if there’s no family history, you probably don’t have one of the inherited Ataxias. Your good attitude will help you live a longer, happier life!
Best Wishes,
Kathy
Same story here Adam, they don't know where it comes from. I heard it in 2004: idiopathic late-onset cerebellar ataxia. I was 53 at the time. But seeing your photo, you don't look like late-onset. But then again, I don't know at what age they start calling it late-onset. Not knowing will hopefully keep you positive, you say. But 'not knowing' can also be gnawing.So let that GO. Focus on the things you CAN DO and put away with the things you can't. Enjoy, cherish the can do's: my ONLY way to stay positve and that might just work out for you as well. Laughing is quite a medicine. So try to BOOST your serotonin content. This tiny ‘fairy dust’- like matter, which our brain produces and which makes us feel happy. The trigger to produce is joy, is laughter. Serotonin is put into all kinds of anti-depressants. But why swallow the pharmaceuticals when you have your own factory right there in your own upstairs department. Go get yourself this hilarious book by the author Jonas Jonasson: ‘The hundred year old man who climbed out of the window and disappeared’. Every single page will promise you at least a smile and many will cause roars of laughter. OUT LOUD, really. I got some people looking at me in a pretty funny way. But they didn’t KNOW what they were missing, did they. Voilá..there’s all the serotonin you need. ENJOY and stay STRONG:):)
Good on you Adam. They say with sca2 you have about 10 to 15 years and that's what my daughter may or may not have.
She doesn't know and is very happy with her life at the moment. I don't think its healthy to put a time on these things and you certainly have a good attitude .
Sometimes I look at her and even think she may be a bit better, but I know that's not so. But I am sure without the pressure of knowing, this helps her so much.
So Adam, exercise and eat well and good health to you
That's a strange co-incidence. I had some blood taken this summer for genetic testing - so far, my diagnosis is (the doctors seem to think so, anyway) Spino-Cerebellar Ataxia. I am waiting/seem to have waited a while. I am not rushing to know where this came from, however.
While it is true that the scientists need to know exactly in order to fix/cure this annoying ailment, I know that nothing I do will change this. I don't know how often I've been told by medical professionals that the spine-brain is still a mystery, but right now, it's sit, hope you don't face-first in somebody's birthday cake, an wait.
I'm sorry to be such a downer. Saturday, I almost fell getting out of bed - caught myself and broke my finger. I live along (I want to), but preparing meals, cleaning, and doing lots of stuff is difficult. Annoying.
Hi Adam, your great attitude is great!! I too have a positive attitude, and try to keep moving. The brain is such a complex organ isn’t it? I have pity parties one day, but snap myself out of it by thinking that at least I have legs and can walk (unsteady but walk). I think of the Boston Marathon innocent bystanders that lost limbs. At least we can be mobile. Good for you.
Dear Adam, Your positive attitude is to be admired! Continue to do the best you can! ;o)
i never bothered to get genetic testing because i also rather not know.
Its hard. but stay positive, exercise and eat healthy. I dont know about Canada but in the US, I cannot believe some of the ingredients in processed food and the FDA allowed that to happen. Even animals that smell those ingredients in the food wouldnt eat it!
and try to do everything on your bucket list.
I think like that too! but not of the Boston bystanders but of our veterans who risked their lives for our country and lost their limbs...like lieutenant Dan from Forrest Gump!
Suzi said:
Hi Adam, your great attitude is great!! I too have a positive attitude, and try to keep moving. The brain is such a complex organ isn't it? I have pity parties one day, but snap myself out of it by thinking that at least I have legs and can walk (unsteady but walk). I think of the Boston Marathon innocent bystanders that lost limbs. At least we can be mobile. Good for you.
Adam, What decisions we make today will effect what happens tomorrow! Keep up going the direction your going! Yes it's work but so worth doing i as you knowt. It's a choice right? :-)
I have Sporadic SCA also unknown cause diagnosed in 2006. I do believe we don't have to give into ataxia of any kind mentally and that is one of the things that have kept me stronger I think.
Love your attitude!!!!!!!!!!! :-)
HI Adam! The power of the mind is a great thing. If you are looking for something belly laugh funny, try to get Jeff Dunham's shows. He has about 4. He is a ventriliquist but he is so funny, I laugh every time I watch him. Sometimes you forget that he is talking to dummies. You may also want to try adding exercise. Keeping mobile seems to be key,. Any exercise helps.
I totally agree with you krod3027! Also, you reminded me of Jeff Dunham. I didn't know who he was but my husband got tickets to see him perform in Vegas a few months back. Talk about funny!!!!! I 2nd that one!
krod3027 said:
HI Adam! The power of the mind is a great thing. If you are looking for something belly laugh funny, try to get Jeff Dunham's shows. He has about 4. He is a ventriliquist but he is so funny, I laugh every time I watch him. Sometimes you forget that he is talking to dummies. You may also want to try adding exercise. Keeping mobile seems to be key,. Any exercise helps.
Just a note to encourage: keep on keeping on! =Silky