Peg B is on a distinguished road

Peg B Peg B is offline

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Showing Visitor Messages 1 to 10 of 14
  1. klinksk8
    02-24-2013 02:12 AM - permalink
    klinksk8
    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!
  2. SCOTTDSC
    04-24-2012 09:14 AM - permalink
    SCOTTDSC
    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!

    Scott
  3. SCOTTDSC
    03-23-2012 04:55 PM - permalink
    SCOTTDSC
    Peg
    I've heard good things about Dr. Little, but that goes for nearly everyone at UM.

    Scott
  4. SCOTTDSC
    03-23-2012 04:48 PM - permalink
    SCOTTDSC
    Peg,
    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!

    Scott

    PS: How did you treatment go?
  5. SCOTTDSC
    03-21-2012 05:47 PM - permalink
    SCOTTDSC
    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.


    Scott

    PS: if you have any hints on navigating around this website I'd be thrilled.
  6. butlertl
    03-13-2012 07:23 AM - permalink
    butlertl
    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
  7. crstr
    11-21-2011 04:23 PM - permalink
    crstr
    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
    Christine
  8. laurel
    11-05-2011 08:28 PM - permalink
    laurel
    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.
    Laurel
  9. _David_
    11-02-2010 05:39 PM - permalink
    _David_
    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.

    --David
  10. yuehan775
    06-18-2010 09:26 PM - permalink
    yuehan775
    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.

About Me

  • About Peg B
    What's your relationship with ALS/MND?
    I have been diagnosed with ALS.
    If diagnosed, when was the diagnosis?
    10/2006
    City
    Flint
    State or Province
    Michigan
    Country
    US
    Occupation
    Education - retired - disabled by MMN
  • Signature
    Peg B

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