Forum Replies Created

  • kerry-penn

    Member
    June 22, 2023 at 2:22 pm in reply to: artificial voice/speech equipment

    I use the Speak – Speech Synthesizer app on my iPhone and iPad. Easy to use and I always have one or both with me. Unfortunately, I did not learn of voice banking until it was too late.

  • kerry-penn

    Member
    February 16, 2023 at 4:18 pm in reply to: Travel Tips??

    My husband and I take several road trips a year. I use a power chair and we have a lift for it on our truck. Before we got the lift my husband would take the chair apart into 3 pieces and put the pieces in the backseat. Our travels have taught us that “handicapped/accessible” varies greatly from hotel to hotel. We’ve been in handicapped rooms that I could not close the door to the bathroom when I went in on my chair as there was not enough space. Also, many rooms have accessible tubs which only means grab bars. Thankfully, I can still transfer from my chair to the little bench in the tub that’s available but I often wonder about those who can’t transfer easily.

    If you have time, contact the hotel where you plan to stay and ask specifically about their accessible rooms. Don’t rely on photos from the hotel website.

  • kerry-penn

    Member
    April 1, 2022 at 8:55 am in reply to: If I could transform healthcare organizations. I’d change…

    Our insurance provider has an online pharmacy which we are required to use for ongoing medications. It is great except the only way to contact them is by phone or US mail. Since speaking via the phone is no longer an option for me, it sure would be nice to be able to contact them by email. I know that my husband, who is my caregiver, can make a call, I still would like to be able to handle as much as I can for as long as I can.

  • kerry-penn

    Member
    June 11, 2021 at 9:21 am in reply to: Member Check In

    I am so very grateful for my husband who is my caregiver. I’m grateful that he is so supportive of my love of photography. I am so grateful that he continues to take me to places where I can get my photography fix. And I’m grateful that I’m still able to do what I love.

  • My son sent this article to me just a few days ago. Praying and crossing my fingers that they find what they’re looking for and it will help all of us affected by ALS.

  • I’m in Georgia. I contacted my GP (I’m her first and only ALS patient) and asked if my husband (my caregiver) and I could get the vaccine. Her office replied right away and we’ll be getting the vaccine on Friday. I believe Georgia is making the vaccine available to those who are 65+ and at high risk.

  • kerry-penn

    Member
    December 22, 2020 at 3:38 pm in reply to: Vaccine on the horizon

    I plan to get the vaccine as soon as I can. My husband/caregiver plans to as well.