Hi
Sorry that was a stupid question to ask when I know you are in the USA.
Sorry
BoB
Hi Lorna,
At least you know that it is cerebellar ataxia and not spinocerebellar. Now if the docs could figure out what brought it on or how to treat it. Cerebellar ataxia is under a HUGE embrella, don’t you agree?
Sara
My understanding is that spino cerebellar ataxia is nothing to do with the spine. It’s a long time since I read about the different types and it is very confusing so I may be wrong.
Patsy
Hi Patsy,
It’s enough to make your head swim or a better way to put it “putting your grey matter to its stretching point!” No wonder there’s so many people confused by their symptoms.
Sara
Very true Sara - I read all this stuff and then cant remember it! I have read so much over the last 4 years or so - it does make me very confused.
I try to remember where my aches andpains are but they keep moving and the neurologist appointments are so few and far between it all seems so futile.
Patsy
Yes I do agree
Lorna
Sara McArthur said:
Hi Lorna,
At least you know that it is cerebellar ataxia and not spinocerebellar. Now if the docs could figure out what brought it on or how to treat it. Cerebellar ataxia is under a HUGE embrella, don’t you agree?
Sara
HI Patsy
Yes it is rather
Especially when you listen to the DR’s and all they are really saying when you look back on it is cope with it.
BoB
HI Patsy
Yes it is rather
Especially when you listen to the DR’s and all they are really saying when you look back on it is cope with it.
BoB
Hi Sara,
i have been watching from a distance, you seem like a nice girl so i will share my mama with you, hope it helps.
Johng wobbly1
718-MeandMyataxia1.doc (3.44 MB)
Hi John,
Thank you for such a nice compliment. That made my day!
I couldn’t open up the link you provided. It would go to files tranfers and then disappear, poof like the wind. I guess I’m going through a “learning phase”. So, if I EVER get a handle on this, the saying “old dogs can’t learn new tricks”, just won’t be true (LOL).
How are you doing? I’m doing good. Write when you can.
Sara
John Gurhy said:
Hi Sara,
i have been watching from a distance, you seem like a nice girl so i will share my mama with you, hope it helps.
Johng wobbly1
Hey John,
Old dogs CAN learn new tricks!! I was able to open your link. Wow, what a story. I, too, worry about passing this onto my daughters or future grandchildren.
Unlike you I got the results from my genetic tests, all negative. I’ve had 4 MRIs and there seems to be a disagreements from the neurologists whether my cerebellum is shrinking. The last one told my husband and I that my cerebellum was intact, but over the phone, a few days later he said it was atrophing but in his written report he states it was normal. No wonder I’m confused!
I have to use a walker to get around. You get use to it but that’s not to say it doesn’t embarrass me. But you got to do what you’ve got to do.
Sounds like you got a raw deal from the company you use to work for. Have you ever heard the saying, “bad things happen to good people.” Life sometimes can be unfair.
Have you ever thought of writing a book? You certainly have a talent for it. You might not make a lot of money but you can help bring this disease OUT OF THE CLOSET.
Sara
- Some days I think I have. Other moments I fold. But I have a snow globe by my bed with 3 smiley flowers in it to wake up to and the writiing on it says ‘I will fill each day with happiness’. Works for me. It’s the little things that help.
- Went to my GP in Feb 1999 and said I was wobbley. Saw consultants from A-Z. Cerebellar Ataxia diagnosis in 2008. So only 9 years
- On my 9 years journey from my GP to finally seeing Dr. Giunti, some consultants just weren’t helpful, informative, and left me in the dark. However 1 or 2 really fought my corner. I remember the good ones. They’re on the christmas card list.
- I swim every Monday. I knitted hats for the Africa appeal on Paul o’ Grady. Knitted scarfes for the Round Table to sell. Go on my laptop and make friends where ever I can. Sell on ebay and donate to Ataxia UK on there. Would like to take up jewellery making, but not quite got round to it. Now the weather is getting better, I’ll be pottering about in my little garden with my faithful dog who is always happy to dig a whole for the new plants and bulbs.I do more reading or watching the tv.
I am quite a strong minded person. Now I know what I am dealing with, I know I’m not going to get better, I can’t go back, so I just have to roll my sleeves up and get on with it. I’m not a quitter, my parents wouldn’t stand for it and I wouldn’t want to disappoint my children. My Sister is my friend and she admires my spirit. Maybe you need to find something or someone who inspires you. We’ve all had to adapt our lives. I too was very active. It doesn’t do any good to dwell on what’s gone by. A good motto to have is, ‘that was then, this is now’.
Good Luck. Chin up, best foot forward. Take care. Jenny. x
Hi Jennifer,
Excellent reply! Thank you.
I’m inspired by the people on this site. You probably know how brave these people are. I’m inspired by my family, they have really stepped up to the plate. I relax by drawing and getting on the computer.
I really like your motto. A friend said to me, “it is what it is.” That’s the motto I’ve relied on during tough times.
Sara
Hi Patsy,
It’s enough to drive a person’s sanity to the breaking point, yes? I know what you mean by waiting so long to see a specialist, it seems to take forever. My pains seem to move too, so by the time I see the doc, it’s moved to another location.
Don’t worry, we will all get through this!
Sara
Patsy said:
Very true Sara - I read all this stuff and then cant remember it! I have read so much over the last 4 years or so - it does make me very confused.
I try to remember where my aches andpains are but they keep moving and the neurologist appointments are so few and far between it all seems so futile.
Patsy
It’s comforting to know that others have same problems with these moving pains - if only I could find a medical consultant who understood too! My GP is quite good but she doesnt really understand - I feel quite at odds when she rushes to open door for me !
Patsy
Hi Patsy,
I take it that your GP is a “General Practitioner”, well don’t be surprised, neurologists and movement experts don’t know a lot about ataxia either, at least in the USA!
Sara
Patsy said:
It’s comforting to know that others have same problems with these moving pains - if only I could find a medical consultant who understood too! My GP is quite good but she doesnt really understand - I feel quite at odds when she rushes to open door for me !
Patsy
Yep! she is general pracitioner. She fell on the ice and broke her wrist last month so has been out of commission for a bit - that wont make it any easier for her to keep up! My neurologist deals mainly with MS but the most understanding consultant [hospital] I had was a rheumatologist. Although my symptoms baffled her too - I was treated for Lupus for a year and then a further test refuted this diagnosis. If one has Lupus diagnosis there is a 3-monthly clinic to monitor you - It would be very helpful if this was the case with Ataxia conditions - I am sure it could be added on to another clinic.
Patsy
Sara McArthur said:
Hey John,
Old dogs CAN learn new tricks!! I was able to open your link. Wow, what a story. I, too, worry about passing this onto my daughters or future grandchildren.
Unlike you I got the results from my genetic tests, all negative. I’ve had 4 MRIs and there seems to be a disagreements from the neurologists whether my cerebellum is shrinking. The last one told my husband and I that my cerebellum was intact, but over the phone, a few days later he said it was atrophing but in his written report he states it was normal. No wonder I’m confused!
I have to use a walker to get around. You get use to it but that’s not to say it doesn’t embarrass me. But you got to do what you’ve got to do.
Sounds like you got a raw deal from the company you use to work for. Have you ever heard the saying, “bad things happen to good people.” Life sometimes can be unfair.
Have you ever thought of writing a book? You certainly have a talent for it. You might not make a lot of money but you can help bring this disease OUT OF THE CLOSET.
Sara
Hi Sara
Glad you got it and thanks for the supportive suggestions Hope you are ok dont be a stranger.