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Showing Visitor Messages 1 to 10 of 56
  1. Julyrose715
    12-23-2017 11:19 PM - permalink
    Its been three years since my first symptoms bargain. I get through each day as best I can. I am totally dependant to a power chair and can do very little by myself, it has been a depressed journey thus far. If not for my faith I would be a complete mess.
  2. frankb
    01-28-2015 11:25 AM - permalink
    Great idea. Mike knows the VA backwards and forwards. He has been a information rock star. Just wish we all had a VA Med Center like Tampa.
  3. Jeff Long
    09-11-2014 02:47 PM - permalink
    Jeff Long
    Hey Mary! My best to Tom too.
    I have done the grant request with Bill but I need the other form that says I have lost the use of one hand or one leg, which (thankfully) I haven't... yet! VA called two days ago and the PWC is here in under 3 weeks. So I either leave the PWC in the garage or go on my own and buy the van. Seems a shame to waste the money that the PWC costs, so I'll probably start shopping this weekend. Guess I'll use the grant if the first van breaks down before I do!!
    Barb is well, just busy picking up my slack for the things I can no longer do. I believe this disease is as hard, or harder!, on the CALS as it is on the PALS. Still holding out hope that some smart guy will at least find a way to slow this monster down before too long.
    Things are always crazy, but we need to get together sometime soon for a feast and a visit.
  4. Jeff Long
    08-27-2014 03:26 PM - permalink
    Jeff Long
    We're doing okay. I am having some hand/arm issues that are worsening (though still better than others, so I am not complaining). We're in the middle of the housing adaptation grant, which is the typical paperwork nightmare. Plans have been sent to our VA rep, who I think then sends them to Atlanta for final approval. Went to the VA for a PWC 'fitting', at Bedlack's referral, and submitted the form for the vehicle grant. Of course, now they want the form that says I have lost the use of xx limbs (which I have not yet), so who knows where that is headed! Can't walk much without having to stop for air, and can't get a vehicle grant to move the PWC... seems I may be spending a lot of time at home!!!

    How is Tom doing these days? And how are you doing?
  5. Jeff Long
    06-16-2014 08:31 AM - permalink
    Jeff Long
    Hey Mary,
    We spoke to the VA rep about two months ago and filled out the paperwork; however, have not heard from him since. Emails and phone calls unanswered at this point. I have plans from one builder and have had another come out to assess the job, but cannot seem to get a reply from the VA. Frustrating to say the least.
    I've been having some "progression" in my arms (right, mostly) which is alarming - and maddening!- and the breathing issues continue. My speech is a lot worse too, so Uncle Lou is having his way with me at the moment. All annoying as hell, but we're still keeping our spirits up.
    At the time of the article I couldn't have said a bad word about my experience with the VA, but this housing issue is more than a little upsetting. Bill Pack with the PVA has been magic since Day One, and I credit him for having set me on a great course from the very beginning.
    Had an interesting trip to D.C. for the Advocacy Conference as well.
    How is Tom doing these day?
  6. skipper66
    05-10-2014 03:03 PM - permalink
    Hi ! How are things going for you? My dad is doing reasonably well. He is losing quite a bit of the use of his hands now and is back using a bi-pap now. His breathing isn't real bad yet but they thought if he used it at night he might have more energy. The VA has been wonderful to him. They get him stuff without him even asking. There is talk of them maybe even getting him a van. Take care, Kim
  7. skipper66
    12-25-2013 05:21 PM - permalink
    Hi Mary,
    Hope you had a nice Christmas. I am excited because on January 2 I am going to see my dad. I haven't seen him since Labor day. How are things going for you? Take care, Kim
  8. BlueK58
    06-19-2013 01:40 PM - permalink
    Thank you for your advice! I am talking with my dad and I think we may write up something casual and light hearted along those lines and put it somewhere in the house! Hope all is well with you
  9. corbster98
    04-18-2013 05:20 PM - permalink
    Do you know what is Missy's user name is?

    I can't seem to find it.

  10. skipper66
    03-30-2013 01:05 PM - permalink
    Hi Mary,
    How are things going for you? Just stopped by to wish you a Happy Easter. Take care, Kim

About Me

  • About maryhahnward
    What's your relationship with ALS/MND?
    I am a caregiver for someone with ALS/MND.
    If diagnosed, when was the diagnosis?
    State or Province
    I am the wife of a veteran with ALS
    Teach High School Online
    Writing, photography, exercise
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    Caregiver In Chief


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