support

  1. M

    Rushed ALS Diagnosis ??

    First off, my heart goes out to all of you. You are so incredibly brave and generous with sharing your time, experience and support. My husband walked into a neurologist's office with symmetrical muscle weakness and walked out with a diagnosis of ALS. Some background - My husband is 51 and...
  2. J

    Lift Chair Question

    For those of you with Golden lift recliners, can I get my PALS into it with a hoyer? I have been exclusively using a hoyer to transfer him for a while now. I'm pretty sure he could not stand on his own even with support, even just for a pivot transfer. (I'd be scared to death to even try.)...
  3. G

    My symptoms

    Hello everyone, my name is Greg. My heart goes out to everyone who has been afflicted with this disease and my thoughts and prayers are with all of you. Also, I want to thank everyone for giving g your time and efforts on posts such as ‘Do I Have Als’ your time and effort is greatly...
  4. V

    Husband is a possible carrier of c9 gene - anxiety over symptoms.

    Hi Everyone, My husband is 35 years old and has lost a cousin, an aunt, 2 uncles, (all to ALS) and currently watches his mom battle the final stages of ALS. His family carries the c9 gene. Upon visiting with his mom over Christmas (they live out of state) and spending a week surrounded by ALS...
  5. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
  6. J

    Growing more concerned.

    I’m sorry to be back but, I feel as if things could be progressing. I’ve noticed what I believe to be muscle wasting of the outer muscles on my right foot. I also have a large “dent” in my calf. My whole leg feels unstable and fatigued. I walk on my instep and I’m afraid this is happening...
  7. K

    Left Leg Anomalies

    Hi All First of all thank you for all of your support and taking the time to answer our questions and helping us understand what to make of our symptoms. My situation started in early January where I was having sharp, pin like pain in my left thigh - I blamed it on exercise at first but now...
  8. S

    My Dad was diagnosed a year ago and I’m looking for some support

    Hello all, My father was first diagnosed with lower motor neuron ALS roughly one year ago. He got the official diagnosis in September 2018 when they were finally certain that it was not CIDP. Within the week my Dad was diagnosed, I accepted my first job out of graduate school and moved 2 and a...
  9. ReginaS

    breathing difficulties

    Hi all, My PALS describes that he has the feeling that the air passages in his head (above throat) are not staying open but collapse or close when his head is in certain positions. Do you know what is happening? He is uncomfortable lying down, elevated lying on one side is OK - on the other...
  10. P

    neck pain

    My husband, Frank, has had increasing neck flexion (chin resting on chest) and tilt to the right. His head is now so far forward that the wheelchair headrest supplies no support. He has a neck brace but even this no longer helps. I am applying heat and he is taking extra strength Tylenol with...
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