I bet it is stressful with your husband and then you finding out but it doesn’t get any better but you just learn to live with it. I never could walk with a cane. My balance was so bad, I justused a walker. The Neurologist had me on cordopa/lova can’t spell it) but it is a medicine for Parkinson. I just am getting use to falling and hope nothing brakes.
My type is Recessive. No family history, it took forever just to get a diagnosis of SCA (first sign of imbalance 1990, finally diagnosed 2011). My parents were carriers but unaffected themselves, my brother is free from symptoms.
My type is probably inherited but none of my immediate family has it. i have had it for many years (i was thought at first to have Multiple Sclerosis) I managed quite well until recently and i worked as a Nurse for 25 years. But then the Hospital where i worked was closing and i was offered an offer i could not refuse (maffia style) I still feel a bit bitter about it i fell i could have worked on for 5 maybe 10 more years. But it was not a bad offer i had a NHS pension and government benefits so money is not a problem in my life.
I managed quite well untill my mid 60s and i did not use a cane until then. But now i need a walker outside as my balance is poor and i fall a lot. I am wondering if i would be better going into a wheelchair rather then continuing to struggle walking. But i suspect there are a lot of cons if i do this. I do get depressed at times as there seems little to look forward too.
I was thinking the same thing. It would be easier. I even have a electric wheelchair, but guess I am stubborn about giving anything elce up. I exercise my legs everyday and am on the walker full time.
I do. SCA 8, its hereditary. Not a lot out there but having a community is helpful.
My spouse was diagnosed 4yrs 3m ago. There is Parkinson’s on his Dad’s side, but no ‘Ataxia’. Five yrs. ago he was starting to bump into things, (walls, doorways, tables) His legs where feeling weak and he also had trouble writing. His eyes started rotating in almost 1/4 circles; one to left, the other to the right. Nine months after symptoms became very apparent, he had to stop working. He’s mid fifties at this point. Now upper fifties, his speech is getting really bad, I translate for him when necessary, and when I can understand. Seems to be worse in the evening. He never could us a cane. He said he didn’t know which way he was going to fall. I finally got him to use a walker at home about 1 1/2 yrs. ago. He will very seldom use one in public, he’d rather hold on to me. If he goes down he knows I go down as well. No serious injuries from falls so far. It is a very depressing time, but as time goes by it seems that it’s more depressing to me then for him. He gets pleasure from food and has gained about 20 pounds (not good) Television and listening to books on a tablet are about all he can do. He’s still goes to bouts of PT and OT every year and does some exercises at home, also rides a low, high backed stationary bike a few minutes a day. I still work, so that is almost an escape. But I do worry, and our routine is pretty much the same every week. I am so sorry for all of you that are going through this. Friends and family tell him all the time that they are praying for him; his response;" Well I think you must be doing it wrong, cause it ain’t workin’." And everyone laughs…
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I would like to come in contact with you Shorty. My 24 year old nephew Mikael is very interested of your work with dealing with Ataxia. He has spino cerebellar ataxia. We live in Sweden and has no contact at all with others who has the same disease.
He would like to ask you som questions if that is ok with you.
Best regards,
Linnéa Borg
hi, im not shorty but i do have cerebellar ataxia. not spino cerebellar ataxia. but ill answer any questions for you i can.
bobbyI would be happy to answer any questions you might have and also urge you to watch that YouTube videos posted title is training with cerebellar ataxia
I have cebellar ataxia and would be more than happy to answer any questions. I also held onto my husband in public, but knew it was getting to hard on him, cause I didn’t know which way I was going to fall and was pulling on him. I went to a walker inside and out. I also have a stationary bike for exercise. Mine gets worse at night also.
Thanks! How can Mikael get in contact with you? He’s not in this group.
/Linnéa
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Here’s another take on cerebellar ataxia…going under anesthesia…my first symptoms occurred following a surgery in 1999. The symptoms seemed to smooth out…then I’ve had four more surgeries (2 in 2014~~with worsened and ongoing symptoms since). I’ve had a couple of severe hits to my head when younger so perhaps, in my way of understanding, when I had the two surgeries in 2 1/2 weeks of one another in 2014, I said, “something in my brain just didn’t wake back up.” I’ve found a lot of help from a balance program and a book of treatments written in 1902. JD
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Does the cordopa/lova make you sick to your stomach?
I didn’t have any trouble with it.
I too have it and also my husband was diagnosed with stage 4 Colon Cancer this past February! I feel I have no life now. P.T. has helped a great deal. Walk with a cane now, but do not give up, still drive and try to go places! Take care!
Beachbaby I’m so sorry for you. And just keep fighting and never give up! That’s what I told my husband when he was diagnosed. I can’t imagine how you are able to care for your Husband while you have this awful disease. My Husband would not be able to care for me. I tell ya, we have our pity parties, ( I have my share) but I take him to John’s Hopkins and I see so many that worse off then he is, especially the children. It really makes me feel guilty and breaks my heart. We were very fortunate to be able to travel a bit earlier in our marriage, now of course, like you said, we have no social life anymore, and of course our retirement plans are out the window. But I just keep telling myself that things can always get worse. So I try to keep a positive attitude, and be thankful for the wonderful life we shared BA-(before Ataxia) I’ll keep up with how you’re doing on this web-site. I wish you the best and God Speed.
Senior, my symptoms began three weeks following a pretty major surgery for a broken arm - they put in eight pins and a plate, and I had a second surgery one year later to have the hardware removed. My doctors have denied that the fracture caused this, but I’ve always felt it had something to do with the surgery. And my “Idiopathic late onset cerebellar ataxia” has gotten worse – balance, speech, handwriting, all the classic stuff, plus issues with muscle tone and atrophy. How soon after the surgery did you notice it? Did the surgeon admit to this?
Catherine,
Oh, let’s have a conversation! Yes, I noticed on the fourth day following my second surgery. And I have found help in several resources. And I’ll happily share them with you as I’m now seeing improvement. Warmly, Judith