I have been joining another discussion on a different forum and thought it might be useful to put it here too.
I have just had a swallow test and the lady recommended that I use ‘ThickenUp’. They have an excellent website with lots of tips on how to cope with choking.
I cannot remember if I have mentioned this but I think it is worth knowing about. It is slightly depressing though, sorry. We have ataxia in our family and unfortunately my Dad died from weak throat muscles. He was having a routine operation and aspirated twice in the recovery room of our local hospital. He died in intensive care 10 days later from complications due to aspirating. The hospital did not realise that he had weak throat muscles. If you or a member of your family with ataxia needs to have an operation please be sure that the doctors are aware of the problem, especially the anaesthetist.
Sorry again for being depressing but it is important to know : )
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Litty
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Thank you Litty, much appreciated that you could share that info. Condolences Litty for your Dads passing. I have SCA, what type of ataxia do you have ? I was Dx in 2009, Had a few other Dxs like Parkinsons, Extraprymidal signs and MS-I think I have SCA. Take care
Dear Litty, My sympathies go out to you for the loss of your dad! Thanks for the info on "ThickenUp". Also, thank you for the reminder regarding surgery! So important to remember for those with ataxia! ;o)
The 'Thicken Up' does look like it MIGHT work. I did try a sample sachet and it is a very weird feeling but definitely does not affect the taste. Like I said, I was very impressed with their website though.
Thank you for all your kind comments. It was a long time ago now. Dad dying
was just one of those awful accidents that happen, but it is worth knowing. My sister, who has ataxia, had an operation about a year ago and they gave her a spinal anaesthetic and it worked a treat : )
You are my very first reply , this why i joined the group to share things and pick up tips . Thanks for sharing your information very useful to know .I was dx in 2013 , suffered restless legs for a few years slowly getting worse until it was getting constant i begged the dr do something this is not a joke , a few other things started happening , and so on . i went to see the neuro dr and test were done and they found out i have ataxia SCA which one she said was a very hard things to say as i have a bit of this and a bit of that . My mum past away in her bed asleep 4 yrs asleep , nobody expected a thing we were visiting from Scotland for xmas and i went to wake her up and couldn,t i then had to wake my dad up laying next to her a sight that will remain with me forever . SORRY unloaded abit there but i know she had terrible trouble swallowing and felt she couldn't get things to work . She was never dx as far as i know they just told her she had a balance problem due to her inner ear and her restless leg she had for years when she sat down but i don't think the dr did anything . thanks again for the info , and sorry again for your dad x
Glad the post was interesting and I really hope you find this forum as useful as I do.
That is so sad for your mum to die at Christmas, but at least you were there and she did not suffer.
The doctors mis-disgnosed my father too. They thought Dad had had a stroke for many years, (they think he might have had one as well as the ataxia). I am also lucky because he had SCA1 and they just discovered the blood test for it before he died, so I know which sort I have. X
I'm very sorry to hear your sad news about your dad. Was this recently or some time ago?
However, thank you for this advice. I'm going in to hospital in a couple of weeks for a routine op with a general anesthetic and i didn't even think to mention my choking. I will def tell the doctor beforehand now. Thanks very much.
Hi Litty, I too have SCA 6 recently started getting weak throat muscles. Sometimes I push on my neck to swallow. Now I’m getting Reflux. Tried Prilosec for 3 weeks. Can’t do it long term because of side effects. I’m now taking Goli gummies. They seem to help burning but now I may regurgitate some. Not pleasant, sorry. Do you experience anything like this? What do you do to help it?
We used thick- it for my dad. It worked well for him. I also drink better with a straw. I add rice, noodles or veggies to make a thick soup so it’s not all broth. Add just a touch of milk to cereal to get it wet.
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