boston

  1. lgelb

    Boston Children’s AAC Program seeks P/CALS input

    An introductory video explains the project’s goals — which include developing AI-enabled AAC to help PALS communicate in real time. The survey consists of 33 questions for PALS; 15 questions for caregivers/family; and 18 questions for clinicians.
  2. Nikki J

    App for accessibility - new so far starting in Boston

    https://ahoimate.com/ it is dependent on user input but when a place has information entered it gives a score similar to the way we see neighborhoods getting walk scores when I signed up they had me pick what matters to me like elevators, ramps, parking options, automatic doors, restroom...
  3. P

    One week since diagnosis...

    My girlfriend was told that her symptoms are consistent with ALS a week ago at Mass General Hospital. As I stated in previous posts I have known for a while...and her dirty EMG sent us to Boston for the second opinion/confirmation. The first few days were spent crying/ holding her. She now...
    • pfd161
    • Thread
    • age als ankle boston clinical crying diagnosis dirty emg emg info riluzole second opinion symptoms walker what to do next?
    • Replies: 8
    • Forum: Newly diagnosed
  4. T

    Just found out - please help.

    My husband is in his late 40s. We were told yesterday by our regional ALS specialist that he has ALS. I am in shock and devastated. They started him on drugs already and we are getting him a second option in Boston soon. Hopefully next week. I need help putting the next few weeks together. We...
    • Thomas933
    • Thread
    • advice als boston children drugs please help scared sleep work worried
    • Replies: 71
    • Forum: Current caregivers
  5. W

    Update from recent neurologist visit

    Hello again, to all the wonderful helpers here. Had another EMG yesterday and my fine Dr doesn't think my weakness is caused by ALS. She thinks I have a progressive muscle disease. Again she is recommending I go to Boston's Brigham and Women's hospital and see Dr Amato. He is a respected...
    • wyoste
    • Thread
    • als back boston emg muscle neurologist update weakness women
    • Replies: 2
    • Forum: Could this be ALS?
  6. A

    My mother’s diagnosis

    Hello to all, As I’m sure everyone here can understand, I never thought I would need to post on this forum. My only knowledge of ALS was through the ice bucket challenge! My 70 year old mother was diagnosed with ALS at the beginning of August this year. I first noticed something wasn’t quite...
    • AliCat
    • Thread
    • als boston bucket challenge bulbar bulbar onset clinic diagnosed diagnosis emg feeding feeding tube ice ice bucket challenge neurologist neurology onset reading speech stroke vacation
    • Replies: 6
    • Forum: Newly diagnosed
  7. Nikki J

    Boston Marathon

    ALSONE is a designated charity for 2019. This means they have a certain number of entries for their team that do not need to be BAA qualified. If any CALS or friends are interested in running and fundraising contact ALSONE I always wanted to run Boston!
  8. W

    Wyoste update neurologist visit

    Saw neurologist today. A couple of days earlier because she had a cancellation. She recommended I go to Brigham and Women's in Boston to a muscle specialist. She said he was best in world lol. I suggested she do another EMG before I go to Boston. She agreed to that idea. I'll have to wait until...
    • wyoste
    • Thread
    • als boston emg muscle neurologist problems support update women
    • Replies: 6
    • Forum: Could this be ALS?
  9. Kristina1

    Boston area PALS..

    Is anyone else going to the ALS ONE conference? Link: https://alsonecareconference.org/?utm_source=ALS+ONE+Community+Care+Conf.&utm_campaign=Tickets+push+1&utm_medium=email My husband and I are planning to go.
  10. David

    ALSA PSA Appearance and Awareness Opportunity

    On behalf of the The ALS Association and Vitamin Enriched, a real people casting company in NYC, we reach out to PALS and CALS for participation in a public service campaign. We are looking for people who are living with mid to advanced stage Amyotrophic Lateral Sclerosis (ALS), and their...
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