1. T

    Getting Help, Caregivers

    We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas. For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're...
  2. Doglady

    HERV-K suppression study

    Wondering what others may think of the idea of Human Retro Viruses being thought to be a cause of ALS and use of HIV drugs to treat PALS? Info on the study: https://www.ninds.nih.gov/Disorders/Clinical-Trials/HERV-K-Suppression-Using-Antiretroviral-Therapy-Volunteers-Amyotrophic The clinical...
  3. KimT

    Suggestions/Comments - Dental Care

    I'm preparing a sheet to distribute to dentists. It needs to be one page max. I thought about using bullets but it would make the document too long, I think. I need some volunteers to help me add important things and keep it simple. My dentist is very receptive to "training" for her staff...
  4. David

    Leapcure Muscle Cramp Trial

    Do you have frequent muscle cramps? Have you been diagnosed with a motor neuron disease like Amyotrophic Lateral Sclerosis (ALS), Primary Lateral Sclerosis (PLS), or Progressive Muscular Atrophy (PMA)? If you’ve been diagnosed with motor neuron disease and meet the requirements listed below, you...
  5. K

    Recruiting for A Study on Coping

    PARTICIPANTS NEEDED FOR RESEARCH IN TAILORED ENGAGEMENT FOR OLDER PERSONS WITH ALS We are looking for volunteers to take part in a study aimed at understanding how older adults with ALS receive and cope with their diagnosis. As a participant in this study, you would be asked to: share your...
  6. S

    Tips and Tools for in home helpers

    I am looking for some ideas for binders or any tools that I can use to organize for the aid, nurses, and volunteers that will be coming into my home to help out. I am typically a very organized person but for some reason, I can't figure out what will work the best. A folder for each group...
  7. S

    Need for Respite

    I have been experiencing weird interactions with my family, both for those that live here with the PALS and me (CALS), and outside family members. We are Christians, and it seems that no one understands that I need a break. It seems so odd. Thank God I only work once a week and I have a lot of...
  8. R

    ALS-at-home study volunteers needed

    Moving ALS trials into the 21st Century? I hope so. Study Information It looks like you get to keep the gear at the end of the study.
  9. pdcraig

    I didn't know what I didn't know

    I've been catching up today and in the roll call was introduced to Slippery Sally All I can say is "God d****t". How is it I have never heard of this? Thank you Tillie BTW. Even 4 1/2 years into this, there is still the seemingly never ending, "I didn't know that." It got me thinking of all...
  10. KimT

    The finances of ALS

    We all know how expensive this disease is and how it can devastate one financially. I thought it would be good to start a thread of tips for dealing with the money issues of this disease. I know when I first suspected I had ALS, I needed to decide whether I would take my pension in a lump sum...