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  • Hi Peg, I read your message about short/long term disability, and am hoping you can answer a couple of questions for me. I have a friend who has been diagnosed with ALS in November of 2012. He is still working (barely) and trying to make a decision whether to take early retirement (will be first eligible in March 2013) or to take disability. It is his understanding that if he decides on Disability, he will need to quit work, then apply for disability through Social Security, and then be off work for 5 months until he would receive benefits. They have limited finances and don't think this is a viable option. Your post gave me hope that there may be other options. Any advice? Anything you can offer, or if you can direct me somewhere else, that would be great. Thanks so much!
    I had a bad day yesterday. For the first time, I was unable to walk up my steps to my bedroom, even with help. Unless things turn another direction, that means I'll be confined to the first for my house with no full bath! This was very upsetting to me.

    I have a building contractor coming over tomorrow to see if you put an addition on the back of our dining room for master bedroom suite with a wheelchair accessible shower.

    By the way, I'm still scheduled for May 2 at U of M.

    Take care!

    I'm not scheduled to go back to until 5/2, but will probably rescheduled to an earlier date. I'll be going up to the ALS clinic that day for my initial evaluation. It's in the exact same building where I met Dr. Teener the last two times I was there. Jack, the social worker for the ALS clinic, told me to literally pack a lunch I'll be there four or five hours that day! I'll guarantee you'll get to meet Karen that day, as were practically joined at the hip!

    I went to have my orthotics fitted today. Frankly, I didn't feel too comfortable with the technician, but we'll see. We had the occupational therapist and physical therapist at the home yesterday for the first time. We both loved the occupational therapist. She was the person evaluating the home, but has agreed to come back whenever practical. At least for finally getting somewhere!

    I two, have a tendency to write way too much so I'll sign off now.

    Take care!


    PS: How did you treatment go?
    Hi Peg!

    Well, here I am on the ALS forums. Looks like you been on this since 2006. Pretty cool!

    Last few days have been a bit of a *****. Yesterday I felt great in the morning, but ended up falling three times after 4 PM and then in the middle of the night was too weak to stand up in the bathroom. I ended up crawling out the bathroom door and then rolling across the floor to the bed where Karen helped boost me into the bed. I'm exhausted today. So is Karen.

    I did find out something very interesting yesterday. I lost 37 pounds in the last six months. According to U of M, ALS requires between 2500-3500 calories a day just to maintain! They recommended animal fats and lots of protein! My wife is thrilled! It seems that if your body doesn't have enough protein it starts to break down your muscles. I just wish somebody had told me this six months ago.

    Anyways, talk to you soon.


    PS: if you have any hints on navigating around this website I'd be thrilled.
    Peg....where do you go for medical support? Where did you get your diagnosis? My wife lives in London ON and will soon be moving there. I will need to come to the States for Medicare coverage. Thanks
    Hi Peg,
    Yep, you have seen me before in "braintalk" and "neurotalk". I have seen you before, too, and I think we have "talked" : ) I am also on the mmn forum but this seems to be busier. It may just be the few days I have been on it but I think it's a great one and hope it stays busy. I have been reading about your port and I congratulate you for doing it. I had ivig today and was talking with my nurse. She said that it is so much easier to get it that way. It has gone through my thought process so I hope to read how it is going for you.
    Take care, Peg
    Hi Peg,
    My husband is getting his port on Monday. We were shocked that the specialist is doing it so quickly. We thought he would be on a list for a month or two. I'll let you know a few days after all about it, and how it went.
    Peg -

    I've noticed your posts on several sites about MMN. I was recently diagnosed with MMN myself, and I am also seeing a doctor at U of M Ann Arbor. I started IVIg treatment at the beginning of October. I am having treatment every two weeks, and was curious to know more about your experience with IVIg and what brand you are receiving, etc. My first treatment has eliminated the severe leg cramps that used to wake me up in the middle of the night, and has reduced a lot of the muscle spams and the "painful to the touch" pain I would experience whenever someone touched my right arm / hand. However, the weakness persists and (prior to dx, and treatment) I developed a claw hand -- which as of yet has not reversed.

    In some places I've read of near instant recovery, yet my nurse says its a slow process. Any insight or suggestions or other helpful alternatives to aid in recovery would be much appreciated.

    Hi, I read one message in which you said "...Regarding insurance: I do not pay anything for the treatment. My insurance covered it and then Medicare when I became officially disabled..."

    I understood you were receiving IVIG at home.

    Medicare will not pay for IVIG at my home. I would like to learn how you managed to arrange for Medicare payment at home. Thank you.
    Hi Peg, Just happened apon this site and read everything you said about MMN. My son was diagnosed a few years ago and I have been so frustrated to find people that actually have this disease. He just tured 46 and I have been frantic trying to find others. Reading your posts have made me feel a little better. He gets IVIG which work. The doctor is just trying to determine how often. It seems to come back every ten weeks and then right downhill. They may try every three weeks to see if that is better. I don't understand all the technical jargon about this disease and am grateful that the treatment works. Have you had any luck with taking supplements. I know you mentioned exercise in one of your postings. All in all I hope you are doing better. I would appreciate it if you would get back to me. I truly need some feedback. Right now his left hand is what seems to be most affected. When it gets back he really can't use it.
    Hi Peg! I live in your area-sorta. I am famliar with area. I live in Rochester, have you been out this way? What als clinic did you go to? I am currently going to wayne state hiller als clinic and seeing Dr. Ascadi (asst proff. of neurology). Have you heard of this neuro or the clinic? Thanks, april

    Well girl..... I did it!! The artwork is installed and they loved it! So much so that when I got back to work yesterday there was a message from the Colonel's secretary that he wants to see me this coming Monday morning for artwork for 2 more projects!!! I'm flying out this time :)
    Wish me luck..........Jo
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