planning

  1. H

    Lost in a daze

    Friday we went to the ALS clinic and recieved a definitive diagnosis. ALS. We had anticipated this but still held out hope it might be something else. I feel like I have been hit straight on by a brick wall. The clinic has a good support program and we are going to get started as soon as...
  2. halfin

    Bypass bipap, straight to trach?

    Saw the local pulmonologist today. My breathing is still OK, FVC at 83%. But that's down from 90% a couple months ago. He was pretty cheerful and we talked about the longer term. He said he would support whatever we wanted, and we said we were planning on a trach when the time comes. He said...
  3. H

    I need to get this all out..

    My mother has been diagnosed with ALS as of Friday, the 9th. She will be 63 this year, and all of her symptoms thus far match perfectly with the signs of ALS as far as I understand it. Although she's been diagnosed by a specialist in our area, he is recommending her to a doctor at the Mayo...
  4. K

    my husband diagnosed with possible/probable ALS

    Hello, My husband was just diagnosed with possible/probable ALS by a specialist. He has denervation in his left arm and hand--so now we are just supposed to wait and monitor progression but the specialist thinks it is ALS and offers no other possibilities. We are planning to go to Mayo for a...
  5. morningdew

    Back from hospital!

    Hello, everyone. Well, here I am, having finally had the tests I've waited three months for. The emg was "I don't see anything that convinces me you have als - any abnormalities could be put down to your age". MRI was OK. The neurologist, who specializes in motor neuron disease, showed concern...
  6. jimth

    National Parks

    Me and my wife got back yesterday from a wonderful vacation to Zion and the North Rim Grand Canyon National Parks and I have to say I was pleasantly surprised how accommodating they are to wheelchair access. We flew into Las Vegas, which I was apprehensive about because it was my first air...
  7. CCMominVA

    If you have a private duty nurse --

    When did you decide to do it? My mom will be alone after I leave on Monday to head overseas. I am so freaked out. My dad is wheelchair bound, but pretty independent, still wants to use the toilet on his own, etc. Mom nearly dropped him on the toilet the other day, and he was hanging onto her...
  8. luvnmm

    Traveling

    Good Morning All! My mom was diagnosed with ALS Sept 2009. She currently uses a walker and a wheelchair to get around. She uses a bi-pap with oxygen at night. She is talking about flying out to Albuquerque, NM some time in the future. I know she had to use oxygen while out there this past Feb...
  9. tifferlynn

    help- is this Unethical

    This may silly but I need to know from others like us if having a benefit to raise money for mom who was diagnosed with onset ALS on Jan. 4, 2010, I believe the website refers to it as Progressive Bulbar Palsy ALS. At that point she was just really weak but was still able to eat, talk and walk...
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