traceythom
09-23-2006, 01:45 PM
Swallowing success.
I am classed as a severely disabled person with Cerebral Palsy. Athatoid is the type of c.p I have.
I have always been a bad eater and for most part of my life I and other people have put it down to a bad appetite. Well, over the past two years I have been doing a lot of experimenting.
First, I tried eating two hours after having a drink because I always felt full and thought I would choke. It got so bad that I was hating drinking and eating. I would choke on a mouthful of coffee and I was too scared to go back to eating or drinking. The two hours didn't make that much difference.
Then early this year I worked out that it was salt and sugar that makes me panic when eating and drinking. So I cut down on both of these and it was pure bliss to eat and drink well but then the symptoms returned with a vengeance. I was back to square one again, losing weight and having no energy to live.
And then the big one came through. The big breakthrough. For twenty odd years I had been eating fruit on and off. I ate bananas for fifteen years because I took my tablets in mashed up banana each morning. And then three years ago I decided to take my tablets in a bowlful of tinned rhubarb & custard. I loved it. All the while eating for the rest of the day was impossible. I panicked, I choked and I had near misses where I could have died. It was dreadful.
So I started having my main meal at 11am so I could at least get some good food inside me. It improved my swallowing so much, but I didn't connect it to giving up fruit, or I didn't want to connect it to that because I love fruit. I gave up bananas and rhubarb, but I still had fruit juices and still eating was an ordeal. I was then introduced to yogurt drinks. Basically, I loved the strawberry drink and I overdid it big time and the eating was awful.
I gave the yogurt drink up, but STILL I tried to have orange juice. Why I did this I don't know, but I have now gave the whole fruit thing up and to be honest I eat like a pig. I’ve just been away to Ireland for a week and I ate and drunk non-stop. My P/As can't believe the change. I ate like a bird, but now I eat three times a day, well size meals. I’m hungry non-stop.
There are a few other foods that do the same to me as the fruit does. These are seafood. I.e. prawns, salmon. Tea is another thing that sets it off big time. I can not drink tea ever and I love the stuff.
Salad cream, beetroot, tomato sauce, tinned tomatoes, chocolate bars. All these affect my swallowing big time. Without any of these I eat just fine. My life span has grown so far as choking to death is concerned and this has been a big success for me.
One other major breakthrough is the position of my tongue when I take the spoonful of food in. if my tongue is out when the food goes in I have no fear of the food going straight down, but if my tongue is in my mouth when receiving the food I panic and the food jumps down my throat causing choking and coughing. This is very scary for me and the P/A feeding me. I have my food blended, but still all of this applies. I have eaten solid food very occasionally. The blender is my lifeline. I never get embarrassed about how my food looks like. Just blend it and eat safely.
If this could help anyone else who has Cerebral Palsy I will be a happy lady. It took me until I was 43 years old to do this, so it is never too late to start doing self testing. Determine to find the answer is worth doing for a nice easy life.
My water works stopped working for eighteen months because I was so bad at drinking. I only urinated twice a day and the worry that caused me was dreadful. Now I go four or five times a day and it is just fantastic.
[removed]
I am classed as a severely disabled person with Cerebral Palsy. Athatoid is the type of c.p I have.
I have always been a bad eater and for most part of my life I and other people have put it down to a bad appetite. Well, over the past two years I have been doing a lot of experimenting.
First, I tried eating two hours after having a drink because I always felt full and thought I would choke. It got so bad that I was hating drinking and eating. I would choke on a mouthful of coffee and I was too scared to go back to eating or drinking. The two hours didn't make that much difference.
Then early this year I worked out that it was salt and sugar that makes me panic when eating and drinking. So I cut down on both of these and it was pure bliss to eat and drink well but then the symptoms returned with a vengeance. I was back to square one again, losing weight and having no energy to live.
And then the big one came through. The big breakthrough. For twenty odd years I had been eating fruit on and off. I ate bananas for fifteen years because I took my tablets in mashed up banana each morning. And then three years ago I decided to take my tablets in a bowlful of tinned rhubarb & custard. I loved it. All the while eating for the rest of the day was impossible. I panicked, I choked and I had near misses where I could have died. It was dreadful.
So I started having my main meal at 11am so I could at least get some good food inside me. It improved my swallowing so much, but I didn't connect it to giving up fruit, or I didn't want to connect it to that because I love fruit. I gave up bananas and rhubarb, but I still had fruit juices and still eating was an ordeal. I was then introduced to yogurt drinks. Basically, I loved the strawberry drink and I overdid it big time and the eating was awful.
I gave the yogurt drink up, but STILL I tried to have orange juice. Why I did this I don't know, but I have now gave the whole fruit thing up and to be honest I eat like a pig. I’ve just been away to Ireland for a week and I ate and drunk non-stop. My P/As can't believe the change. I ate like a bird, but now I eat three times a day, well size meals. I’m hungry non-stop.
There are a few other foods that do the same to me as the fruit does. These are seafood. I.e. prawns, salmon. Tea is another thing that sets it off big time. I can not drink tea ever and I love the stuff.
Salad cream, beetroot, tomato sauce, tinned tomatoes, chocolate bars. All these affect my swallowing big time. Without any of these I eat just fine. My life span has grown so far as choking to death is concerned and this has been a big success for me.
One other major breakthrough is the position of my tongue when I take the spoonful of food in. if my tongue is out when the food goes in I have no fear of the food going straight down, but if my tongue is in my mouth when receiving the food I panic and the food jumps down my throat causing choking and coughing. This is very scary for me and the P/A feeding me. I have my food blended, but still all of this applies. I have eaten solid food very occasionally. The blender is my lifeline. I never get embarrassed about how my food looks like. Just blend it and eat safely.
If this could help anyone else who has Cerebral Palsy I will be a happy lady. It took me until I was 43 years old to do this, so it is never too late to start doing self testing. Determine to find the answer is worth doing for a nice easy life.
My water works stopped working for eighteen months because I was so bad at drinking. I only urinated twice a day and the worry that caused me was dreadful. Now I go four or five times a day and it is just fantastic.
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