There is a wealth of medical information about ataxia on the Internet. I, however, would like to talk about the human cost to ataxia patients. My gait ataxia has affected my balance and walking since 2014, and it was diagnosed in December of that year. (I also have fibromyalgia.) In 2014 I fell at least 30 times. Every time was frustrating and embarrassing for me. A nondrinker, I have worried that people would think I was drunk when I lost my balance - especially when I had been driving my car. I have to walk with a cane, even if I think I don't need it, just to alert people that I have a medical condition. I can't run. I can't even walk quickly. On Christmas Day, I had to be helped up from my Dad's low-sitting couch, and I couldn't take the baby and walk around the house with her. My husband (who is also disabled) doesn't want me going up and down stairs, fearing I will fall. Every day when I wake up, I am so exhausted just thinking about how I will have to fight ataxia and my other medical conditions each day. How do you all handle the stress? And how do you get your family to understand?
I am fortunate in that my family has been very understanding of the problems I face in life. It is frustrating when I do go down and check that the ground is still hard - I just try to keep going and let it fade away, sometimes that is easier said than done! I think it is easier if there is no one watching - still frustrating, but less embarassing! Occassionally I have to get help with something I could have done myself a few years ago (I was diagnosed about 7 years ago) - that is embarassing for me, but my family is understanding to me so that makes it a bit easier. The most frustrating for me is the gym - I can't run anymore, and even walking on the treadmill I have to hold on or off I go.
I don't have any new advice or insight to give - this, to be blunt, sucks but it is life now.
I found that physical and occupational therapy helped me the most. I was falling about twice a week and now I trip/fall about 2-3 times a month. They taught me how to walk differently. I can now walk without tripping which causes me to fall. I can step over objects. I was even having trouble walking down stairs normally. I now do that normally. I have to do it slowly and hang onto a railing but I walk down like everyone else not one step at a time. We have been doing a lot of core work (your neck to your butt). We think our walking is with our legs and feet but that is only part of it. When we walk we need to be using our core correctly. If you do decide to try PT make sure they work with neuro patients not orthopedic. There is a difference.
I've been fortunate that my family and friends are understanding. I've been fortunate that I don't use any canes/walkers/wheelchairs but I know they may be in my future.
There is no miracle cure for ataxia and it does get frustrating at times. Sometimes we just have bad days and are sick of it. Here is a great place to vent if you don't have family/friends you can turn to.
nobody will understand a illness till they have it. im not that bad yet[walking with a cane] but have a wide gait. there are people worse off than me althou i cant work no more. cause of cerebellum ataxia. carry the cane but only use when you have too.
Did you try considering Balance Wear Belt