• Diane became a registered member 3 months, 1 week ago

    • Welcome, Diane! My name is Dani Liptak. I am a forum moderator, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at the age of 12. Please feel free to respond to any of the open discussions that we currently have in progress! Let me know if there is a topic that you would like to discuss or if you have any questions in general about the forums. Enjoy the day, and thank you again for joining the Muscular Dystrophy forum.

      • Thank you Dani for the welcome. I look forward to futurr discisdoons,
      • Dealing with changes in increased usage of the Trilogy Vent during the day. Just need some input. If you use it during the day:

        1. Do you have a portable vent?
        2. How do you adapt when toileting?
        3. How do you adapt in the shower?
        4. Do you go out?
        5. How did you emotionally deal with the. changes?
        THANK you in advance for all your input.

          • Hi Diane! I will work on finding someone to answer your questions. Those are important questions you asked and would benefit many with responses.

          • A coworker with Spinal Muscular Atrophy said “Hey, @Daniliptak! I use a Trilogy, but I usually only use it while I sleep. However, I do have a secondary portable one that I just use as a backup. Back when I got my trach and was more reliant on the vent, I kept it in a metal carrier on the back of my chair. That’s something that my DME company provided. Now, I have a carrying bag with a shoulder strap for it. A DME company can provide one of those as well. I wish I could answer more of these, but I hope that is helpful information.”
          • Hi there Diane and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

            Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called Mitochondrial Myopathy and wasn’t diagnosed until the age of 9.

            Here at the MD Forums, we are like a support group, sharing experiences, giving advice and generally discussing life with MD. Don’t hesitate to join in on any of our many forum topics. This a safe and judgment free zone. If you have any questions, want Dani and I to cover a specific topic or have any critiques on how we can improve the forums please let us know by private messaging either one of us on our profiles.

            Wishing you a lovely day,
            ~Leah

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