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  • Hi Pat I just wanted to drop by and tell you that I am thinking of you. I hope that you are adjusting to this new journey, and find some joy soon.

    his is hard too-it is that memory foam. I have never had memory foam soften up --sorry. he still loves it. the support under his neck is what he likes, and that he doesn't sink into it so he can breathe easier (nose doesn't get covered up by pillow). I just wish that it was longer as when he rolls from side to side I have to move the pillow so his head doesn't fall off of it. have him give it the old college can always return it!
    Hello Pat, our husbands were diagnosed at the same time. My husband's ALS is most lower motor neurone affected, which means that he has lost the use of all his limbs, but has no problems with speech, or swallowing. His ALS is pretty atypical, so the doctors are a bit stumped by him, and how to manage his disease process. We had a big surprise when we found out that his breathing would be compromised because of the denervation of his diaphragm and not because he had bulbar involvement.
    Just want to wish you a merry Christmas and happy new year...You are an inspiration to me and so many here!
    I hope you had a nice thanksgiving and got some calories in your husband!

    I remember when my husband was about the level yours is--he wanted to feed himself but could not lift his arm to his mouth and was coughting and choking all the time. he spent a while trying to eat by himself at the bar, standing hunched over so he could lean down and shove the food only a few inches. when he started trying to just eat with his mouth like a dog because he couldn't hold the fork and move it, I thought I would have a nervous breakdown. it was tough accepting being fed, but life for him got easier if more humbling. wish you luck!
    Hi Pat!

    My sister & brother in law live in Niantic. He was in the Navy - corpsman on a sub is how they ended up there.

    The VA has a caregiver support program. It is a telephone program. It isn't ALS specific but it is still pretty good. I've been on a few of the calls. If you are interested let the social worker of the caregiver program at the VA know and they will set you up.

    My husband was a Marine and has ALS. The biggest problem we have with the VA is prosthetics. I find the one we go to appalling. It is like pulling teeth to get anything from them in anything close to a timely manner. We also go to an ALS clinic that is not VA connected because the overall care is better. We go to the VA but only as necessary.

    Hi Pat, I just ran across a couple of your posts. I notice that we are a little older than you, but close in age - I am 61 and Gary is 65. So sorry you have had to join the ranks here. I read and read and still have so many questions, but there are certainly a lot of people here who have experience and knowledge to help. There are also many websites where you can get help. One of my favorites can be found here: You will learn, as you ask questions and do research, that there is more than one way to do things. You will get all kinds of advice, so you just have to try different methods and see what works better for you guys.

    Blessings to you,
    Hi Pat,

    We all have to stick together--this is really, really, really tough, going through ALS. I am glad you are here because you will need the support we can give you. I have gotten so much help here. Please ask any questions you like!

    your friend,

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