clinic

  1. C

    Please share your experience at ALS clinic - very frustrated!

    Hi all! We’ve only been to our ALS clinic once to meet neurologist and clinic nurse which was two weeks ago. During the visit we inquired about a couple trials my Dad may be interested in as well as treatments Riluzole and Edaravone. The Neurologist and Nurse said they could give us no advise...
  2. T

    Poems

    My name is Ron Schaffer ,.. id like to share some poems I wrote about als and some friends that passed. .hope u like them.. This Thing I often think of walking Through fields of grass and streams These things i took for granted Now they're just a dream Friends I used to have Over time...
  3. jethro

    Info about EH301

    i tried to contact elysium directly, by now no answer... does anybody have info what is going on with it? copied: The Orphan Drug Designation submission included data from a 2017 double-blind placebo-controlled European pilot study in humans. To expand on the results of the pilot study...
  4. Tippenme

    Newbie--need help decoding respiratory numbers...

    Hello to all: I am a newbie and was diagnosed after a year of symptoms in June of 2018 at OHSU here in Portland. (I had previously gone to Mayo in Rochester and was badly misdiagnosed...a story for another time perhaps.) I have been reading through the forums and am truly blown away by the...
  5. C

    Father officially diagnosed today - help please!

    Although we had a probable diagnosis a few weeks ago we were waiting to get into our ALS clinic for an official diagnosis from them. It still came as a big blow for my father and our family even though we were expecting it. My question is his ALS functional scale rating was 46. Is that...
  6. bkite

    Have vent, will travel II

    About 3 years ago, the ALS Clinic social worker counseled to get "green time. Still getting my dose of green! :razz: Love the eastern Cascades!
  7. V

    Medicare Question

    ISO some medicare help here. My husband is newly diagnosed and being seen at the John Hopkins Clinic. At our appointment last week, it was suggested we go ahead and get the medicare paperwork in and started. My husband is very early stages and only has some weakening in his hands and arms...
  8. Kristina1

    falling

    When my doctor/clinic asks me about falls, what exactly do they classify as a fall? I know this is something I should ask them directly but I forgot at last visit. I had assumed that "falls" only refers to falls resulting in ER visit injury. Lately I am tripping a few times per week, but...
  9. M

    Recently diagnosed

    I am a 61 year old female diagnosed in May 2018. Not a fan. Most of my issues are with my legs at this point and I am hoping to return to work (working from home though). Been to the ALS clinic here in Toronto and they were really supportive and helpful. Doing physio. Getting a foot brace for my...
  10. C

    Gaining strength back in weak hand/arm?

    My Dad is newly diagnosed at 59 years old. He’s always been in great shape, on a hockey team, long distance bike rider, and golfer. When his hand weakness started a year ago he slowly began to lose strength in hand and then some muscle atrophy in same arm along with twitching. My question is...
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