Are there ways to stay active, productive and socially involved as Ataxia symptoms gradually get worse?

[jneilw51]

About fifteen years ago, I was an active person selling various insurance and investment products. Then, I started noticing balance problems. At first, I underestimated how much my ability to maintain balance had decreased and, as a result, had no concern walking over a garden hose in my garage. The unevenness of the hose caused me to lose my balance, fall on the concrete floor, and break my right leg near the hip. After that, I think that I became overly cautious. I left my job, and decreased doing physical tasks both inside, and outside. Also, I felt unable to keep-up with other people and, so, cut back my social activities. Are these reactions typical with persons who are just starting to experience symptoms of Ataxia? I feel that my reaction to my symptoms has caused me to feel that I have almost stopped accomplishing things in my life, that I reduced my efforts to experience new things, and that I am becoming increasingly socially isolated, and physically out of shape. What I am wondering is whether these feelings are common among persons with Ataxia. Even more importantly, I wonder whether some people with Ataxia have managed to overcome those problems by maybe, for example, finding some sort of online employment, or other type of work that is not too physically demanding. Has anyone found any ways to make themselves feel more productive, more able to stay in shape, and more able to develop social contacts? Not being able to continue to work at your previous employment, not being able to be very physically active, and avoiding social contacts because you feel embarassed and out of place, have, for me, proven to

more difficult to handle than has not having the ability to stay balanced.

[margaretm]

Hi,

The first thing that I noticed about your post was your excellent English; the second was your determination.

Speaking as a former English teacher and careers' adviser, I shall offer you a plan/ series of possibilities!

You could register in the Do-It volunteering website to find volunteering opportunities, some of them on line, in your area. You can use your education and experience to help others and to make a difference within your community. You might also want to join a Book Group/ writers' group, although this is not for everyone.

To improve your general confidence in your mobility, I suggest asking your GP to refer you to both the local physiotherapy service, where you will be assessed and may join a balance class, and to the neurophysiotherapy service, where a specialist will come out and create a programme of walking and core exercises for you. They will look at your home to suggest how you can use a familiar environment to best advantage.

Ataxia can be cruel and unpredictable. I think that we have all felt isolated and frustrated at many times. In a sense, it is a bit like a bereavement, where we are mourning our former fit and active selves. Once we have accepted that things have changed, but that we still have talents and that there are possibilities out there, there seems hope, even when we are having bad days.

Good Luck!

[Hidden]

Wise words from Margaret.

Look up 'Kubler Ross bereavment curve' online and notice where you are on that currently. We all have to come to terms with the loss that goes along with ataxia. The early stages of this bereavment can take time to get through, particularly if we have good days, when we forget, followed by bad days when we can go right back to anger and self pity. All of this is completely normal. Knowing this can help us move through to acceptance of what is and a realisation that there are still things to do and a contribution to be made. Margaret, Iain, me and others on here have got to acceptance. We face the challenges of our condition with a determination to make the best of each day.

Iain is raising funds for research, I have started a website, which I think you have visited, containing self help exercises and tips to fight back against ataxia. In a previous reply on here I offered my contact details to anyone who would like to talk with a fellow Ataxian. Send me a message and I'll happily give you my details.

In the meantime you need to know there are many things you have to offer from your experience of life. Don't let the wibbly wobbly gene stop you.

Nigel

[Pec2884]

Hi. I was a highly competitive sports person. Now newly diagnosed ataxia (unknown cause as yet). Had weeks of depression at the prospect of becoming inactive. Then decided to became pro-active. If I am going to eventually land up in a wheelchair I will need upper body and core strength. Now have new goals. Pilates strengthening one on one classes twice a week. Feel so mentally good. Could even go paddling in near future. Only my legs and balance affected at present. I know I will in for another downer sometime when ataxia progresses but hope that won't be for a long time. Use what you have to the best of your ability. Regards.