1. tripete

    Got Cigaretts on the run!

    For my nurses
  2. S

    End Stages

    Hello, My mom is in the end stages of ALS. We had in-home hospice for a week when we decided together to go to the in-patient facility so she could be more comfortable as the meds at home were not doing enough. We’ve been here almost a week now and she had been more comfortable but now I am...
  3. F

    Tizanidine for spasticity

    My wife was just started on Tizanidine for cramps and spasticity. She is having severe pain in her arms, hands and legs. What is the maximum effective dose that would help her. We are using a Nurses Practitioner who is not that familiar the doses for this. Any help would be appreciated. Thank...
  4. A

    Edaravone Radicava Protocol

    Hi Everyone, I'm looking for some help here as Radicava is now approved in America. We are very close to having the infusions done for my husband in a Sydney hospital. The only thing holding us back is that we don't have an English written infusion protocol. Does anyone have one from their...
  5. S

    Mom with FTD and ALS

    Hi all, my name is Mari and I'm Finnish. I lost my mom to ALS on Nov 17th. She had an Alzheimers diagnosis on July 2017 as we took her to memory tests as she didnt seem to remember everything as normal and did not cook or do gardening anymore nor cleaned the house as usual. She was diagnosed...
  6. H

    New to this

    This is my first time posting, so please feel free to advise if I’m not posting in the correct spot. My mom was diagnosed in September and given an functional rating of 43 after her first clinic that same month. Last week, we went to her second clinic and her rating dropped to 28. Her lungs are...
  7. K

    Extending Hospital Stay

    Hi guys, I was wondering if any of you guys had any suggestions on extending a hospital stay. My dad is currently nearing the final stages. He is completely bedridden and has been on a trach for about six weeks. After the trach was done, Kaiser sent him to a subacute facility. However, the...
  8. K

    Claiming to be short of breath while on trach and vent

    Hi guys, My dad got his tracheotomy and ventilator a little over 2 weeks ago. When we were at the hospital, he was doing fine adapting to it. His heart rate was around 70-90. However, we just moved to a nursing facility that has a subacute section and the first week, he was doing fine. But in...
  9. F

    Still not sure if it's ALS

    I have posted here before about my wife's condition. She has been in a wheel chair for over a year now and getting very weak. Recently she was hospitalized due to horrible stomach pains and constipation. I sent her to Lahey Clinic 3 times in a week by ambulance and they finally admitted her...
  10. 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...