Ataixa support groups

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Permalink Reply by Carol Gow on February 20, 2010 at 3:28pm

Hello Amy
I was diagnosed in the early part of 2009 and during the latter part of that year went to a meeting. Like you I thought it was nice to meet other people in a similar boat. A couple of us compared our lives and what happens. I came away feeling part of something and knowing I was not the only person in the world with Ataxia. I may have this condition and the limitations it brings but I have made some good friends.
This is one reason why I think this site is so important and so helpful. Whatever we think we need to have the opinions of others.
Regards
Carol

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Permalink Reply by Marie Turner on February 20, 2010 at 4:10pm

Carol Gow said:

Hello Amy
I was diagnosed in the early part of 2009 and during the latter part of that year went to a meeting. Like you I thought it was nice to meet other people in a similar boat. A couple of us compared our lives and what happens. I came away feeling part of something and knowing I was not the only person in the world with Ataxia. I may have this condition and the limitations it brings but I have made some good friends.
This is one reason why I think this site is so important and so helpful. Whatever we think we need to have the opinions of others.
Regards
Carol

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Permalink Reply by Marie Turner on February 20, 2010 at 4:29pm

Hi Amy

I was diagnosed last Autumn and joined my local group straight away. They are a lovely positive group and I always come away having had a good laugh at some of our antics. I met someone with mild CA and his difficulties were just like mine. When I share things with them I know it is not in my mind . The symptoms can be very difficult for a non ataxian to understand. I can park in a disabled bay,and lurch off for a good dog walk but a few hours later I need assistance to walk. I get some strange looks like my dad used to when his Parkinsons was better with drugs and he used to push his wheelchair around til the drugs wore off and he was so paralysed I had to wipe his nose for him.I believe there are loads of people with neurological symptoms like ours but sadly few have heard of Ataxia and don't understand.I sometimes say it is a bit like MS because its a condition that the public understand.I explain if there is time.;
Regards
Marie

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Permalink Reply by Amy Cantrell on February 20, 2010 at 4:29pm

Dear Carol,

I was diagnosed 8 yeara ago. I have been taking care of my dad.who is in a nursing home for 9 years. I have 3 brothers. One has this. None of them help me and don't live here. I worked until last year. My bosses were more concerned how this affected them and not me. I am trying to move on and meeting people that understand really helps. My dad has this plus other things. Meeting uplifting and positive people was great! Amy

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Permalink Reply by Amy Cantrell on February 20, 2010 at 5:48pm

Marie,

I have felt so much better about this ataxia in the past week than in the past 9 years. I only hope my 2 boys don't get this. I hear so often that people have never heard of this. My husband is wonderful about this. We have learned about it as I progressed with it. We find humor it in when we can. I ride his motorcycle with him and the funniest thing was when I got my cane out, the clerk at the hotel thought I was blind! My friends help me. Perfect strangers at airports help me. It is the people that don't want anyone to be unique or have a disability that infriges on them that I take issue with. Thanks for writing. It is good to know you are out there! Amy

My husbandMarie Turner said:

Hi Amy

I was diagnosed last Autumn and joined my local group straight away. They are a lovely positive group and I always come away having had a good laugh at some of our antics. I met someone with mild CA and his difficulties were just like mine. When I share things with them I know it is not in my mind . The symptoms can be very difficult for a non ataxian to understand. I can park in a disabled bay,and lurch off for a good dog walk but a few hours later I need assistance to walk. I get some strange looks like my dad used to when his Parkinsons was better with drugs and he used to push his wheelchair around til the drugs wore off and he was so paralysed I had to wipe his nose for him.I believe there are loads of people with neurological symptoms like ours but sadly few have heard of Ataxia and don't understand.I sometimes say it is a bit like MS because its a condition that the public understand.I explain if there is time.;
Regards
Marie

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Permalink Reply by Mike Herbert on February 22, 2010 at 2:52am

Go to a support group, this condition came on me by surprise I'm 59 and I was very annoyed with the world but meeting perople with ataxia puts it all in perspective, you'll be surprised how many fantastic people have ataxia Mike Herbert(Nottingham Support Group)

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Permalink Reply by Amy Cantrell on February 22, 2010 at 7:16am

Dear Mike,

I am 54 and was diagnosed about 8 years ago. I have felt guilty for years. I didn't understand why I have it, I don't want to pass it on to my kids, and I had to stop working this year. When I met more people that have it, I began to feel better. I am not as embarassed to use my cane. It does put life in perspective-thanks! Amy Cantrell (Topeka)

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Permalink Reply by Mike Herbert on February 22, 2010 at 9:54am

thanks Amy I agree with the guilt but we must go on

Amy Cantrell said:

Dear Mike,

I am 54 and was diagnosed about 8 years ago. I have felt guilty for years. I didn't understand why I have it, I don't want to pass it on to my kids, and I had to stop working this year. When I met more people that have it, I began to feel better. I am not as embarassed to use my cane. It does put life in perspective-thanks! Amy Cantrell (Topeka)

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Permalink Reply by Amy Cantrell on February 22, 2010 at 10:14pm

I think I feel guilty because there is no explanation for being treated like I am a bumblebrain! It was like I could help the way I walked. Some people at work took it that I couldn't work as well, when it really had no bearing on that. My neurologist told me that people would just think I was drunk! Amy

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Permalink Reply by Alan Thomas on February 23, 2010 at 5:34am

I am chairman, of Ataxia South Wales, and I will say, that the social aspect, for Ataxians, and family, is so beneficial.

It is a GREAT source of information from people in a similar position.

I have seen the positive Benefit, of people attending support groups / branches.

I know there is also a support group in Sheffield , which meets regular and Derby.

Alan Thomas
Ataxia UK trustee

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Permalink Reply by Linda on February 23, 2010 at 7:40am

Hi Amy
I live in South Africa we have an on line support group, small but positive, when i was first diagnosed age 18 , i am now 22 i found them, my extended family to be wonderful. . This may sound strange but i have never been in the same room as other Ataxians.I hope to travel to the UK later in the year with my mom and dad,we are thinking of October so we can go to the Ataxian confrence, its funny how something like ataxia can bring people in the same boat together, i may even meet some of my online friends.
Best wishes Linda.

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Permalink Reply by Amy Cantrell on February 23, 2010 at 8:23am

Dear Linda,
I am 54 and had this for 8 years. I had never met anyone with it before this month! My dad and one of my older brother's has it. It was amazing to meet other people of all ages and all types of Ataxia. I live in Kansas. It is a rare disorder, so I don't think it is probable you will run into many people allicted with this! What type do you have at such a young age? I hope you get to the UK and have a great trip! Amy

Linda said:

Hi Amy
I live in South Africa we have an on line support group, small but positive, when i was first diagnosed age 18 , i am now 22 i found them, my extended family to be wonderful. . This may sound strange but i have never been in the same room as other Ataxians.I hope to travel to the UK later in the year with my mom and dad,we are thinking of October so we can go to the Ataxian confrence, its funny how something like ataxia can bring people in the same boat together, i may even meet some of my online friends.
Best wishes Linda.

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