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  • Hi! My name is Kim and I am new to this site. My father who is 77 was just recently diagnosed with ALS. Everyone on this site have been very nice to me in answering any questions I have. My husband and I have three children. Our twins (boy/girl) will be 15 in September and our youngest son is 8. Does your husband use Ritulek? My dad will see a ALS specialist in Dallas this coming up Tuesday, the 12th. Hope you have a good weekend. Kim
    call your pharamcist about the drugs. They are experts and can talk to you on the phone. could be a drug interaction or the weight thing. I was moderated and saw you were on line.
    Hope you guys are doing well and that Dean is tolerating the PEG. I'll bet you're feeling like an "old hand" by now. Don't forget to Take some time to care for yourself too.
    Deb
    I wanted to ask if you guys made it to the support group this month and how the PEG presentation worked out. I hope he's had a change of heart regarding the PEG. Please keep in mind that any advanced directives you've filled out can be amended at anytime.
    Deb
    Hi, I just wanted to say Hello and that I'm glad to hear that the progression seems to be slow and that PT is helping for your hubby's balance issues. I wish that it could have helped with his shoulder problem as well. Wonderful that he was able to give up the walker! Always good to know that everything isn't ALS related and that some things can be fixed. It does take awhile to learn to maneuver around the forums, I still haven't figured out how to easily send links back to older threads. I'll send you a PM so you can try it out. Hope you have a wonderful day.
    Deb
    I don't know who will see this! I'm still not sure of my way around this forum. Private messages, visitor messages - what is the difference? Anyway, things are going status quo right now. As a matter of fact my PAL has graduated from the walker in January to a cane! Seems the problems we encountered in January were not ALS related - yippee! He is getting phycial therapy 3 times a week for balance and a froze shoulder. The balance therapy is helping, no so much for the shoulder. His progression is relatively slow other than the bulbar palsy area. I haven't really been coming out here much to post though I have been reading some most every day. Yes HelenL, I do peek at the "other" post now and then. I just don't like tone the thread was taking. I have not been invited to "Come to Tea" but will pay a visit there one of these days - thanks. I've been drinking at the "pub" LOL! So, as I said in the beginning, not sure who will see this! Very confused.
    Hi DeansWife! LOVE what you posted on that "other" thread that shall remain nameless. I'm done posting there myself, but like a sore spot in my mouth, I do admit to checking in on it! Have you been invited to the "Come for Tea" thread yet? Not sure if I've seen you there or not, but please come and chit chat with us over there.
    Helen
    Just checking in with you ....How are you doing? ( I really want to know!)

    I got kind of lost in keeping tract of who has finished their letters. So will you fill me in?
    If you have finished please send me a copy of the letter, ok?
    Also I am reaching out to people who have wanted to help us in other ways.
    Do you have a couple of hours a week you can volunteer with us?
    We have so much to do and few people to do it.
    But I understand if it is too much. We all have full plates these days.
    Love and ((hugs))
    sharon

    you can email me at: [email protected] (middle initial is L)
    Hi there! It definitely sounds like we are living parallel lives for now, and for that, I'm sorry. The good part is, now you know that someone out here totally understands, in every way, how you are feeling. And yes, there are days that I want to "slap the stew out of him," (a phrase that I stole from one of the members here.....always makes me laugh and feel less guilty for my hostility) and that's okay! Please know that I am here for you, in any way you need. Feel free to message me. I'd like that.
    I wish you luck in finding the way to better living arrangements, whether it be a ramp or a move to assisted living.
    <Part 2 of 2>
    There is more to it than just 100% service connection. He will soon meet criteria for Permanently and Totally disabled. You do NOT have to be 100% to be P&T.

    Apply for Special Monthly Compensation Level R-2. At some point you might be getting between $7,000 and $10,000 in cash monthly, IF you do the papers right. That can go a long way toward making life easier and happier.

    Get all the life insurance you can. When he dies, the military pension stops.

    Do NOT settle for waiting. Drive to your VARO and speak to the Public Contact Team. Be sure to let them know the gory details of the ALS "lifestyle." Ask them to scribble EXPEDITE--TERMINAL DISEASE in red marker on your claim. When the human beings at VARO understand what this disease is doing to the vet, they will shift into high gear and get it all done as fast as they can type.

    If you need help with VA or with daily living, contact me at Atsugi (at) rocketmail.com.
    -- Mike
    DeansWife,

    I'm a 20-year-vet in Orlando. My wife was an MD who passed in August after 8 months of symptoms. We were together nearly 20 years. I have two teens.

    VA and Soc Sec were very good, very responsive for us--after we started going to Tampa VAMC, which has much more experience than Orlando VAMC. They knew how to do wheelchairs, grants, vehicle, home mods, etc. You can be active at up to 3 VAMCs at one time. They'll give you a nice hotel and reimburse travel, too. We got nearly everything we needed very quickly.

    General advice: Try to think 2 steps ahead of the disease. Ask yourself what will he need, how will he eat, poop, speak and get hugs. Also, remember that the VA is made of people just like you and me. If they like you, understand you, and are thinking well of you, then they'll take better care of you. <continued in next message>
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