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olly

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i have had slight problems with swallowing/choking, but my concern is my chewing muscles are weakening. it takes 3 times as long to eat a meal and my face ends up tired/aching, this has happened over the past 3-4months during this time i have also had fassics along jaw line and face. i have lost 20lb during this time even though i should be eating enough to maintain wieght, i have always been of slim build but now i am quite thin and people are starting to comment on it.
has anyone had similar problem,also appetite has gone so tend to force feed myself.
any thoughts/ideas welcome
caroline
 

Steve100

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Hi Caroline :)

Sorry to hear you're not doing so well. The speech therapist recommended things like 'mars' chocolate drinks for my mother, as they're high in calories to keep weight up and do not need to be chewed.

All the best

Steve
 

CindyM

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Hi Caroline- Maybe you should take this issue to your clinic. I am sure they would be concerned about the wieght loss. Meanwhile, fortified drinks (over here we call it "ensure" and you can buy them everywhere) might help or, if you have a blender, try chopping up your dinners really fine. Myself, I tend to eat a lot of oatmeal and soups when my face gets tired. Good luck!
 

Shatzie

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I was encouraged at the ALS Clinic to eat things like pudding, cottage cheese, and yogurt and to make sure that these were the full fat and sugar varieties vs the low-fat, artificial sweetener ones. They are more concerned with me about choking and want me to crush up my Rilutek and vitamins and eat them in the pudding or something similar. I can still chew fairly well, but have some difficulty with chewy things like good bagels. The last time I ate one, I pulled off little pieces at a time and it was much easier.
 

olly

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cindym/steve

thankyou both for your replys,i will have to increase my calories with liquid foods.
also my speech has got a bit worse on a daily basis, all this has started with fassics and weakness in my jaw/facial muscles.i go to mnd clinic next month i think so i will mention this along with everything else lol
best wishes
caroline
ps------sorry steve, how is your mum doing? i hope shes not too bad.
 

olly

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shatzie

thankyou,i will have to try to eat more fattening foods that dont take much chewing.
i have not had the privelage to speak to you yet,but ive read some of your posts and blogs and admire your strenght and courage, especially with your children and the difficulty you have in how much/what to tell them. my son is 19 so its easier.
take care
caroline
 

Al

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Hi Caroline. Hate to say it but it might be time to consider a PEG or feeding tube. When eating becomes a chore the tube can be used to supplement meals.
AL.
 

vmd

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Caroline:

I am having similar experiences, and they seem to be progressing. Like you, my jaw muscles tire if the meal is a large one. I am also having problems chewing hard foods like nuts. My jaw muscles seem to be weaker, but I have no way of measuring this for now. I am trying to maintain my weight and will eat fattening foods in order to keep my weight up. During Lent, I give up sweets, so I need to eat proportionately more calories in order to keep my weight up. Keep us posted.
 

olly

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al

i hope im not ready for that yet. i am worried about the fassics in face/jawline and weakening muscles there. even though iv'e always been slim built,
ive always had a large appetite but iv'e now lost this, and eating is now a chore.also my occasional speech problems are now happening on a daily basis.
the other thing is i get usual twitchings in certain muscles,especially right arm bicep,back.
i do get other odd sensations in my muscles. past few days iv'e had odd sensations in the back of my right thigh,its not a twitch or ripple but a pop like a balloon poping,
its a very wierd feeling. i go to mnd clinic next month and will be having emg.
its 12.30am,iv'e taken my sleep med and baclofen 3hrs ago but im in so much pain and feel ill i can't sleep,i'll be up most of night now then shattered tomorrow.
thankyou al
caroline
ps i've read somewhere that als can effect/kill appetite, iv'e been trying to find info on web
 

Al

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Mine certainly is not as hearty as it was a year or 2 ago. Used to eat a 12 oz. steak now have trouble with a six.
AL.
 

olly

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al , i wish i could chew a 3oz stake, without my face/jaw feeling like its going to fall apart lol:-D
 

hboyajian

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My dad had difficulty eating in the manner you describe for about a year before he lost the ability to swallow solid foods altogether. he went to softer foods at first, and then needed completely blended foods of a thick shake consistency in order to take any food or drink by mouth. This happened rather suddenly for him, so I recommend making sure you have a good quality blender on hand. The PEG tube, as AL suggests is definitely something to discuss with your doctor. If you lose weight, it will be very hard to gain it back. Also, if you have the surgery to place the tube while your breathing is in better shape, you will likely do better with recovery overall.
 

givenin

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Anybody know how far along is to far so to late for the peg? My husband thinks if he takes the Lithium/ Riluzole he can continue eating the way he is for at least a year. His swallowing is more difficult for him to manage but does okay with small soft amounts eaten slowly.
 

kelly

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weight loss

Hello Olly,
I have noticed lately that my husband has been losing his appetite. Before this disease he weighted a solid 220..now he is down to 190. I make him protein shakes and keep the house stocked with ensure. He has also been having alot of pain and difficulty sleeping. Sounds like you are both experiencing similiar things at this point. Keep eating!Hope you get some sleep tonight!
 
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