My dad was diagnosed about 5 years ago with cerebellar ataxia, he is 68 now. It has slowly progressed to where he can’t walk without a walker, speech and swallowing is affected. He also has a history of asthma and borderline COPD. For the past 6 or 8 months he has been in and out of the hospital due to bronchial infections from aspiration. He is on honey thick liquids and swallowing hasn’t gotten worse from the tests however he has always been a fast/big eater and is having trouble breaking this habit. Every time he finishes his dose of steroids/antibiotics his coughing/bronchial issues start up again and another trip to the hospital. We are thinking a feeding tube may help to break this endless cycle. I was just curious if anyone has seen similar issues or had any advice. Thanks.
I do have some issues also where my throat closes and I cannot get air for a minute or so but it seems like 5 minutes and it is terrifying. I used to be on a feeding tube until a few years ago, I was on the tube for a few years and finally was able to start eating and had the tube removed. I am now starting to have problems swallowing and they refused me a feeding tube now. I eat like eggs and certain things that are easy or very pricey meats like filet or prime rib that are tender enough for me but that causes another problem with very high costs so a good meal that I can enjoy is now few and far between. I have to get my throat stretched periodicaly and I think my HMO is trying to limit my visits now, the last visit I had a new doctor and he was angry at me because it was only about 6 months. Now I am having a problem and he is making me go in for GI examination before they will stretch. I am on crutches and my legs stiffen when I walk so walking to the office is really a major undertaking.
I also have cerebellar ataxia. Can’t walk without my walker. My speech has been affected. To me sounds like my words are fine, but have been told my words come out different. One thing my swallowing is fine, at the moment. I have had bronchitis 4 times now. I just got over flu and , of course, it went into asthma and bronchitis. Exercise is good for ataxia but makes my asthma act up. I use my inhaler, for asthma, about 15 min. before exercising. Even if we think we are alone, there are people out there the same, mfulbright just tell your Dad he is not alone.
You could contact your local/nearest ataxia support group, and ask the question Or, search Facebook. Type ataxia into the search box and a number of options comes up, Ataxia Support Groups. I’ve seen posts about feeding tubes xB