Just to say hello

[poolboy]

Diagnosed with Ataxia 18 months ago ( sca6) . Had to lose 8 stone and pack the fags up as well as the beer. I lead a very different life now as I have turned into a gym bunny. It is so gradual it is like torture, but if anyone has any tips about how to stay as healthy as I can for as long as I can I would be extremely grateful. The very best to all of you. Steve

[wobblybee]

Hi Steve, welcome 😊

Have you actually lost in the region of 8 st? I'm impressed 😊

Exercise and keeping an eye on your diet is always advised.

Be careful not to overdo it though, you don't want fatigue to set in.

I think my balance and walking might improve if I could lose a couple

of stone😏

Keeping your mind active is important too, it's so easy to slide into a

situation where sitting still, just zoning out, is the most comforting

thing to do. If you find this happening, get up immediately, before it

becomes a habit😊

Best wishes 😊xB

[poolboy in reply to wobblybee]

Hi Wobblybee,

It is true I did lose the weight and I must say it seems to help at keeping this wretched thing at bay. I have never been so fit in my life!

I try and keep myself active both mentally and physically as my neurologist has told me it is all about confidence.

Thanks for contacting me wobblybee. I came on here because I needed to liaise with other people who have Ataxia, although from what I have read I feel as though I am quite lucky at the moment. I wish you and everybody else the very best mate.

[cclive35]

Steve, I'm Clive, I've had ataxia for 20th years and found gym is the way to go . Make a you feel good both mentally and physically . I even ended up as a qualified reps instructor teaching adult with special needs. Unfortunately I got so confident I walked to gym one day (although it's only 1/4 of a mile away with my balance a taxi was essential ) anyway down I went, broke my hip, ribs and an ankle ( I think my bones were weak due to epilepsy) I've been in a wheelchair for a year now and although I don't need physio help cos i know what I need. I feel stupid to think I could combat this. Let's remember as yet there is no cure . Steve it's only my personal opinion but I was told that because of mainly ataxia I would probably in a wheelchair by the time I'm 30, I'm 43 now and yes I'm in one now cos of fall but with the knowledge I gained with the strength in both body and mind hopefully I'll get out again. Good luck

[poolboy in reply to cclive35]

Thank you Clive. The gym does make you feel better. I came on here because my family don't know I have it. My mum has it bad and my sister has been diagnosed with MS as well. Both of my mums sisters have and unfortunately one of them passed away a couple of years ago. I know I wont beat it and that I have to be careful, but all the time I feel okay I will just carry on.

I was diagnosed officially 18 months , although my MRI scan in 2008 showed up signs of it, so by my calculation I reckon I might have between 5 and 10 years of normal life left, fingers crossed, It is really nice to chat with people who know what its like and to everybody who has contacted a big thank you.

[nigelrheath]

Hi Steve

Sounds like you are on the right track to keep this down. as Clive says don't get cocky and allow for your inherent wobbliness. Many folk on here find multi tasking causes slips. We have reframed this to knowing that sca is the gene which makes us focus on one thing at a time !

Have a look at Ataxiafightback.wordpress.com for some more ideas on what to do.

Nigel

[poolboy in reply to nigelrheath]

I must say mate, I have never been really good at listening to other people. This Ataxia lark is a real game changer, and I know that you and clive are talking a lot of sense . It is the sort of advice that I need at the moment and I do appreciate it. Thanks a lot.

[Iain_100]

Hi Steve - Sorry this message is a wee bit late - just saw this.

Welcome!

As you've already found out, there are a lot of very friendly people here. And, because they too have ataxia, they have some really good practical advice. Staying active, but not overdoing it, seems to be the most common advice.

I was diagnosed with ataxia in March - although the exact cause in my case is unknown. Walk with a stick now. Not what I thought I'd be doing at 49, but that's just the way it is now. The key, now, is how best to cope with/improve that new reality.

Keep smiling mate.

Iain

[poolboy in reply to Iain_100]

Hi Iain. Thanks for your message. I wonder if I could ask you if you had experienced any problems when you were 42/43? I had an MRI scan in 2008 as I kept wandering to the left when I walked, but my doctor told me that it was because I was so overweight and smoked. It wasn't until I pushed for a visit to the neurologist that she diagnosed me with ataxia sca6 in 2014

You are right about the people on here they are brilliant. I joined because I haven't told anyone in my family that I have it .

It will get me in the end but I will do everything I can to last as long as possible. Thanks for you kind words and message mate.

cheers

steve

[Iain_100 in reply to poolboy]

Feel free to ask away Steve.

42/43? Nothing major. Although looking back now, a lot of events are beginning to make sense - or I'm just putting 2 and 2 together - and making 5