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Ataxia Support

Introducing myself

Well, church is off for me today, as I would be drenched before I even got to my car, let alone getting the wheelchair out at the other end! So I thought it was about time that I introduced myself.

I was finally diagnosed with spinocerabellar degeneration 2 years ago, having worried my friends and colleagues by falling down without warning. Having lived with Scoliosis all my life, defying doctors who said I would never walk; fought to go to mainstream schools, university and get a full-time job, I thought I'd had my fill of things to endure.

Now, I can hardly walk and things that used to take 5 minutes, take half an hour!

On a good day I remember that I have had 40 years of walking and doing crazy things like walking miles in a Polish Salt Mine and a Croatian natural park.

On a bad day I think of the things I will never get to do.

I was 35 when diagnosed with SCA2. I’m glad I didn’t have the limitations that I do now when I was growing up or when I went to college or when I had my babies. I had a very active life before I got sick. It was hard, but I have accepted the fact that I can’t go swimming, hiking, ride a bike or window shopping. I have embraced this change by reading and watching movies for entertainment. STAY STRONG!

Just to say Hi and thanks for sharing you experience. I too am grateful for not knowing I had CA whilst growing up and it wasnt until menopausal time that I started falling over.

I was diagnosed in my late 50's and am 72 now... progression has been very slow and I like to think that healthy living has helped. x

nice to meet you Tallulah. i have sca2. i'm trying to do things i used to. it is getting harder.

where do you live? i'm in ny. doctors are no better here.

lorraine

Hello there Tallulah

Check this site: http://walkingwithataxia.com/

You will be amazed as what we still can TRY!

Hi Tallulah :slight_smile:
Here in the North East (Newcastle) we are also enjoying as much rain as Maidstone :slight_smile:
Have a look at AtaxiaUK site, there’s a list of peer led support groups, hopefully one is
within reach of you:-)
If you can’t travel to a group, you could have a nice chat over the phone:-)xB

Thanks for all your tips and support. Very interested in walking with ataxia and peer led support.

I live in Gillingham Kent England. Healthcare is pants. Had to make an appointment with the Consultant myself , then he asked me why I was seeing him, as he could not do anything and offered me anti-depressants!

Lorraine - I loved ny and hope to get there again one day.

Profuse apologies, I don’t know why I said Maidstone :slight_smile:

Anyway, there is an East Sussex and Kent group, if you contact them, you may find someone in the group lives near you :slight_smile: Bear in mind, you can attend any group. It’s nice to actually be able to speak face to face with someone who totally understands.

To help cope with symptoms, many of us are on various medications, these include anti-depressants. It’s a personal choice. But a Neurological condition can bring on depression that’s hard to cope with, sometimes a little bit of help can make all the difference in attitude and the way we are able to cope with other symptoms.

It’s common for Neurologists to come in for some stick. Sometimes Cerebellar Ataxia isn’t their specialised subject, the first one I saw had a special interest in MS. However, he did refer me to a Neurologist specialising in Ataxia.

I was diagnosed in 2011, and didn’t receive any follow up appointments, we’re supposed to be reviewed yearly. Like you I had to pursue this myself :-)xB

Please don't think that I am knocking people who take anti-depressants. I am just trying not to use them, but acknowledge how bad my mood swings can be.

Nice to see u here. Sad to see dreams fly away but we keep going.