Does anyone have any advice about living safely with this? I (wife/caregiver) occasionally choke and it’s no big deal – there’s always Heimlich. But I’m worried that it might be more serious with my husband and I won’t be able to help. I was alarmed when the neurologist said ataxia wasn’t a fatal disease but most people who die with it die from choking.
I have never heard what this neurologist told you...... First off if you have insurance, I went to a speech therapist who also was the person that did the swallowing test* at the hospital. I had the testing done and she gave me tips about swallowing issues etc. You might ask about something like this just so you can get the help you need to feel confident in helping and also know what type of things to be aware might cause choking. I found just swallowing liquid was the thing that I tended to choke on when I was having a worse time with the swallowing issue. I think I read on here the other day where someone chewed gum to help strengthen the muscles in the throat etc. I am sorry your neuro would tell you that. I hope others can give you some info to help you. From what I have read, falling and breaking a hip etc and having complications from the fall is more dangerous for us. Everyone is different so hopefully you can get some more advice on here.
Thank you so much, PG! I remember now hearing that the local hospital has a swallowing clinic; I must follow up on that.
My sister has cerebella ataxia and she chokes more on certain foods than other so i try not to make those,,,,,i cook with alot of butter,gravy,sauces and such there much easier to swallow .......if it get to a point to were they cant chew or swallow well puree is always an option
Thank you, Courtney. This is the first time I’ve ever posted to a discussion and it’s great to get feedback.
I dont know if your choking is the same as mine as to the cause. My throat closes from acid reflux or particles of crumbs try to go down the windpipe, It feels like no air in the lungs and is very scary when it happens, for it I get help with omeprazole and it works pretty good but I still get the occasional closeing. I had neck cancer and have swallowing problems and go in often for throat stretching. I was on a feeding tube until 3 or 4 years ago I finally had it removed. I am now thinking of haveing it re inserted as I have no real appetite and live on just a few eatable things like eggs, toast and cocoa, and a juicey hamburger .Eating is one of my biggest problems. starches are a big problem breads and speghetti and stuff like that. Jerry
Sorry to hear about your challenges, Jerry. My husband likes “slippery food”, which for him does include pasta with sauces. Like you, he also had an operation because of a hiatus hernia and then had to have it stretched 3 times, after which they wouldn’t do it anymore. (I don’t have problems swallowing, but I like the richer type of Ensure as well as shakes and smoothies, but liquids can be hard to swallow too, can’t they?). I have heard there is something you can add to water to make “thick water”, which is easier to swallow. As I mentioned above I’m going to look into a swallowing clinic. I’ll also check out the meds you mentioned. A feeding tube for meals doesn’t sound very pleasurable but nourishment and safety first, right? From the feedback I’m getting it sounds like swallowing problems are very widespread. Take good care of yourself.
Hi, I have CA and I took the advice of my speech therapist. She said only eat 'small, wet food'. By this she meant chopped-up meat, veg, etc. in sauces or with gravy. Avoid dry food at all cost. Suppose its like having your food cut up without the embarrassment of having it cut up for you on your plate! I live on my own and I cook/prepare my own food, so I just cook what I know won't (hopefully) hurt me.
Ed.
I did the swallowing assessment - they told me that foods of "mixed consistency" could be an issue. It was kinda neat to see the xrays they took while I was doing it!
I just went to the neurologist yesterday and spoke to him about the fact that I was beginning to have swallowing problems with water and other thin liquids. He said it was a very good idea to see a speech therapist and receive some training and techniques to swallow properly. He said the main concern was aspiration of food or liquids into my lungs which could result in pneumonia. Many times this is what ataxians die from. Your neurologist is technically correct that no one dies from ataxia. However many other health issues are caused by ataxia from which people die. Therefore the I don’t think it is correct for him to say that no one dies from Ataxia!
Good luck when you swallowing issues.
Kathy
Dear B Andrews, BW Green, and Kathy - This is all very useful info. Thank you.
Dear Michele, As a caregiver, make sure you're well-versed in the Heimlich maneuver. I choked on a piece of prime-rib at a restaurant several years ago, due to my ataxia. Fortunately, there was a police officer having dinner with his wife at the table next to mine. He did the Heimlich maneuver on me, and the piece of meat popped out! Thank goodness, as I was seconds away from passing out and maybe dying. A speech therapist told me to take small bites of food, chew extremely well and take small sips of water between. I eat very slowly and drop my chin toward my chest when drinking liquid. I can eat anything I want, but that's not the case with everyone that has ataxia. My best to you and your husband...,;o)
There is allot of great advice here that I was reading. The only thing I have to add is (sounds funny but it's true) chewing gum to get the muscles used to getting that saliva down and controlling it. I heard a Speech Therapist say to practice that when you don't need to eat. I know it's helped other's allot.
This info. may help,
Please seek medical advice, for any concerns with your condition.
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Yes, Jeannie, I chew gum, especially after eating, as I start coughing more then...,what's up with that? I also chew gum at other times and, yes, it helps! Also, thanks for the sites, Alan! ;o)
Hello there
I have just had a swallow test and the lady recommended I start using ‘ThickenUp’. They have an excellent website all about tips for coping with choking.
On a slightly serious and depressing note (sorry), we do have SCA1 in our family and my Dad did die in intensive care after aspirating twice in the recovery room of our local hospital, after a routine operation. The doctors had not realised that people with ataxia do have very weak throats.
If anyone does have ataxia and has to go into hospital for any operations please make certain everyone, especially the anaesthetist is aware that they have weak throat muscles and may aspirate.
Sorry to be so gloomy but it would be awful for this to happen again.
I used toget food caught in the throat and I would have to leave the restaurant and go outside to clear the throat. It has subsided thank God. Now my only problem is no appetite I have to force most everything down.
Hi Courtney, My sister also has cerebella ataxia.I just joined this sight and im not sure of how to use it. My sister is 62 I am 49 her case is a very rapid one. Ids love to compare with other peopl,e to see what is normal and also what to expect. If you'd like to share your sisters condition id be interested.
Patti Lepovich Kenmore New york
Courtney Balcom said:
My sister has cerebella ataxia and she chokes more on certain foods than other so i try not to make those,,,,,i cook with alot of butter,gravy,sauces and such there much easier to swallow .......if it get to a point to were they cant chew or swallow well puree is always an option
When I eat meats mainly I have a problem, I chew and chew and just end up with the meat dried out and chewed up If it is a good cut of meat I will takebit back out of my mouth and start nibbling small bites off of it.Dont know if I am not chewing it well enough or I cant chew it well enough, my false teeth were not very well made I believe. I was on a feeding tube for a few years and may have weak muscles for chewing. Jerry
What makes eating difficult for me is that I can’t open my mouth very wide anymore. My jaw seems to kind of “stick” so it takes a lot of effort to open very far. The other issue is that it feels like my throat and mouth get tired, if that makes sense? It’s hard to describe.
For me, water and liquids are okay, mostly I use a straw and put my chin down a little. I’m not sure why the straw is easier, maybe partly because it’s easier to hold the cup.
Things that are hard/impossible to eat is anything very bulky and chewy - so for instance salad isn’t possible ( I can’t believe how much I miss salad!) . As long as the food can be eaten in small pieces and/ or can be smashed it goes okay. I tried to eat a small seedless grape today, but that was a bad idea because the peel is hard to swallow, anything stringy is the worst. I’ll give you a few examples of foods that, for me, can cause me to choke and then a food that is a similar type, that I can eat…just to give you some ideas… I don’t know if it will work for your husband, everyone’s different and I know many people have trouble with liquids.
Can’t eat: Spaghetti ( noodles are too long/ stringy) Can eat: lasagna
Can’t eat: Broccoli. Can eat: Avocado
Can’t eat: turkey sandwhich. Can eat: chicken pot pie
Can’t eat: Hamburger on a bun. Can eat: meat loaf