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  1. duplinwino

    Need your thoughts on MMN

    I haven't been on in a while and I hope everyone is doing well. I appreciate the messages! I'll try to make this short but my head is spinning after a new visit to a new ALS Clinic yesterday. A little background, DH was diagnosed with MND/atypical ALS early 2007. He has had a fairly slow...
  2. duplinwino

    Paresthesias, numbness and sleep, oh my!

    I was curious if anyone else experienced pins and needles feeling, specifically in their scalp and face. DH gets these occasionally, sometimes when transferring or sometimes just out of the blue with nothing out of the ordinary going on. He says they're pretty painful but they pass pretty...
  3. duplinwino

    Frustrated

    I'm really going to sound like a whiner, but here goes... We're going on three years now. DH has been in a power wheelchair about 10 months, his right arm was wasted some time ago and his left arm has very little use left. He does not have breathing or swallowing issues at this point. I...
  4. duplinwino

    Osteopenia with ALS

    Hi all. I haven't been around much, we've been busy trying to get the bedroom/bathroom addition underway, I've returned back to work part time and I'm running myself ragged. Anywho, DH fell and fractured his right arm about two weeks ago. The Xray showed that his right arm bone was...
  5. duplinwino

    What do you do when it comes to full time care?

    It's been weighing heavily on my mind these past few days as my husband gets weaker and weaker and I wonder how much longer he will be able to stay home alone safely. He lost use of his right arm some time ago and his legs are unstable, though he's not in a wheelchair yet, I don't think it will...
  6. duplinwino

    Anyone went thru interview with SSD about child benefits?

    Ok, here's the summary of DH's application - Diagnosed January 2007, quit work January 2008, application turned in February. We have been calling and calling to find out the status. We are told May 15th that a decision has been made, that the state finished with his application April 17th(!)...
  7. duplinwino

    Someone please help us with SSDI

    I'm getting a lot of mixed messages, different stories, and need some help from those who have experience. Progression is picking up speed and dh was recently let go from his job, etc. etc. All of that is too long to go into. It is my understanding that with the ALS diagnosis he would be...
  8. duplinwino

    Is this true about the ALS Association?

    I'm doing a walk mid September and have worked my butt off on fundraising. The past few weeks I've raised $1700 on my own. A friend was recently told by a financial planner that the ALS Association only puts 11 cents on the dollar of donations towards the cause, the rest goes towards their...
  9. duplinwino

    Need assistance with fundraising letter

    I have signed up (along with three other family members/friends at this point) for the Walk to D'Feet ALS in September (Kathy/ThomKat, if you see this, it's in Emerald Isle, not too far from you). I would like to start making contact with people ASAP to raise as much as we can. My husband has...
  10. duplinwino

    Slurred speech

    My husband has MND, only lower motor neuron signs at this point. Lately, I've noticed that at the end of the day, on the way home from work when he calls, his speech seems a bit slurred and "all together", like he's had a drink or two... he hasn't had any problems with swallowing that I'm aware...
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