my husband was just diagnosed

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wendjo

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my husband was just diagnosed with als this past week but for the past year he has not been able to eat nothing but yogurt cottage cheese and candy i dont kmow anything really about this can anyone help me with what i can fix him to eat he has lost 60 lbs this past year he is just starting to lose feeling in his hands and feet
 

Nikki J

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Very sorry. Is he going to an ALS clinic / specialist? Was a feeding tube discussed? Was he referred to a dietitian?

if he can safely swallow those things he could have calorie/ nutrition rich smoothies. You can find many discussions here about recipes and ingredients. Any food can be blended too though that may be less appetizing.

are his arms / hands weak and or is he not eating due to fatigue? Does he need help eating?

did the test his breathing? Compromised breathing accelerates weight loss

ultimately a feeding tube would help him get maximal nutrition with minimal effort
 

wendjo

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he is at this time still working he drives a garbage truck the dr says he is in the early stage right now he has difficulty eating solid foods and his hands are tingling and numb on his fingers his feet are the same way not going to a specialist at this time the nuerologist has told him he could be the way he is now for a few more years right now any input would be greatly appreciated cause i dont even know what questions to ask
 

Nikki J

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Strongly strongly strongly urge a second opinion from an ALS specialist. Was he diagnosed by emg ? Did he have mris? Tingling is not usual and if he has lost 60 lbs and a feeding tube was not mentioned I have serious concerns about this neurologist
 

lgelb

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I agree, you need a second opinion. Has he been seen at UT Southwestern? Also, ALSA Texas has an online registration form where you can sign up for assistance.
 

swalker

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I am very sorry to welcome you here.

I agree with others that any diagnosis as serious as ALS deserves a second opinion, especially from a clinic and doctor that specializes in neuromuscular disease.

Like your husband, I lost a lot of weight on my way to diagnosis. In my case, 70 pounds. I was a bit chunky to start with, but hit my normal weight after the first 30 pounds came off. There seemed to be nothing I could do to stop the weight loss.

My doctor recommended I meet with a swallowing therapist. She was of great help! She showed me techniques that allowed me to swallow things I could not swallow before. I have also adjusted my diet so that I eat foods of a consistency that is easy for me to swallow.

I now eat a healthy, but very high calorie diet. That allowed me to stop the weight loss and I have actually been able to gain back 15 pounds.
 

KimT

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Please have him get a second opinion with a neuromuscular specialist.

Once he gets seen, there will be discussions on his breathing and swallowing.
 

rnewton60

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This may only work for me but as I have had bulbar onset ALS for the past 17 months and a peg feeding tube for the past six months. I have discovered I can still eat just about anything with two measures taken. One, take small bites. Two, use your fork in place of your tongue. Use the fork to push the food from one side of your mouth to the other or under your teeth so you can chew it. It works, I can still take most of my food by mouth and only use the peg tube to keep it working.
 

Lkaibel

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My husband had some of the sensation things going on (numbness and tingling) but I absolutely agree that a neuromuscular specialist is essential for proper diagnosis and management. What little is known on ALS is known by them - virtually all others, other neurologists included are not to be relied on for this. Best wishes and do what whatever you need to keep weight on - its very important.
 

frankb

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so sorry for your husband's diagnosis. als is a fairly rare disease and many people don't know much about the disease. my local als chapter helped me tremendously. they explained the disease and informed me of resources which could help me. the more you know about als the better equipped you will be to get care for your husband. texas has at least four chapters: one near dallas and others in austin, san antonio, and houston. according to their web site their central number is 877.714.0088. i totally agree with the comments of the other forum members, specially getting a second opinion from a neurologist specializing in als/neurumuscular diseases. the texas als chapter should help in this regard, among many other things.----and please remember that this forum provides a source for you to ask any question, none to small. the forum has some of the most well informed people that you will find concerning als. good luck and remain strong!
 

frankb

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sorry,lgelb. wish i had read your response more carefully. online registration w/als texas should get the ball rolling.
 
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