Living with ataxia

I also have young kids, used to be very active, used to work, (normal suff) but now i cant! Im 39, but dont let it get u down… where theres a will theres a way :slight_smile:


Easier said than done.
Steven M. McVicker said:

I also have young kids, used to be very active, used to work, (normal suff) but now i cant! Im 39, but dont let it get u down..... where theres a will theres a way :-)

Hey Betty,
I was diagnosed three years ago next month, after a year of wobbling and spiralling depression, when I was diagnosed my Neuro informed me that my walking was unlikely to ever return, but I would be reliant on aids. (At the age of 24 this broke my heart, and my depression just got worse, I had little to no support so I just sank deeper and deeper, I lost the ability to do most things).

Two years ago I had my yearly check-up with my neuro, and he cried when he saw me. He was just trying to warn me of the probable outcome, instead he’d given me a life sentence. I know this sounds dramatic but that is how I felt. I had been stubbornly independent but had become to depend on people for EVERYTHING, I couldn’t even do online shopping by myself. (I was also in a bad marriage, he did nothing to help me and used my disability to control me). My neuro that day told me I had to go home, pack and move out, he ORDERED me to complete three small tasks, to go shopping with a friend, to go out for the evening and to set myself a challenge to walk just five steps. He shared his suggestions with the friend who had taken me to my appointment, who agreed and insisted I did as I was told. This was the wake up call I needed. But it was a difficult six months that saw me homeless and fighting for support as the reality of my illness became more apparent. But on the forced night out my friend insisted on going to a bar, where a guy approached me and asked me to dance, I genuinely thought it was out of pity or a joke, he insisted he just liked my eyes. After an hour he insisted on meeting me within two weeks, where we discussed my illness, my abilities and difficulties. I told him how I missed living. A week later he took me to the zoo and told me that I needed to forget everything, and start from scratch, that instead of learning to cope with all the problems I needed to learn how to live with them. He taught me that everytime I said I CANNOT he would say “you CAN do it but differently” he took me to his gym, and helped me onto some equipment on the lightest weights, to encourage movement in a stable manner. I would struggle to do just 15 minutes. After six months he had supported me to battle an hour a day. Six months ago I saw the neuro again, he cried harder this time, I managed to get out of my wheelchair and walk the five steps to hug him hard and thank him. He jokingly challenged me to ride a bike, going away I kept thinking I wanted to prove I could, so over three months I practiced my coordination to pedal on a supported stationary bike. But in January I broke my foot, I asked the Dr if he would mind me continuing my cycling and he thought it was a brilliant idea, to with the help of the This Girl Can I set myself a challenge to cycle 500 miles. It took me 5 weeks (43.5 hours). And when I finished I was asked to talk on BBC breakfast.

We can do things, we just have to do them differently, slowly, and sometimes in some funny ways. I have started doing Zumba in a wheelchair, I did a 5 ft rock climbing. And I had a race with my 4 year old niece to walk across the lounge, I still fall every time, but her laughter is worth the bruised bum!!!

sorry for the essay