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Holly

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@holly-dillon

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  • Profile picture of Holly

    Holly replied to the topic Irritated Pits in the forum Adults ​With​ ​SMA 4 months, 1 week ago

    tried using fingers to apply it instead of the stick? naked deodorant works good for sensitive skin.

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    Holly replied to the topic Where are you from? in the forum Adults ​With​ ​SMA 4 months, 2 weeks ago

    i’m from virginia in the blue ridge mountains

  • Profile picture of Holly

    Holly replied to the topic Medical Marijuana in the forum Adults ​With​ ​SMA 5 months ago

    you won’t feel a thing on edibles, but don’t take one if you have plans later.

  • Profile picture of Holly

    Holly replied to the topic Hand Falling Off Joystick in the forum SMA Assistive Technology/Equipment 10 months, 2 weeks ago

    my joystick is shaped like goal post. that really helped.

  • Profile picture of Holly

    Holly replied to the topic Let’s get to know each other! in the forum Adults ​With​ ​SMA 1 year, 2 months ago

    1. Virginia, US

    2. 23 but i turn 24 in exactly a week. i have a mutated gene. the condition doesn’t have a name because its newly discovered.

    3. i love that being disabled has given me a community a an identity that has given me a unique world view

    4. dogs. parrots weren’t an option but there awesome too.

    5. anything having to do with nature

  • Profile picture of Holly

    Holly replied to the topic Jaco Denial #2 in the forum SMA Assistive Technology/Equipment 1 year, 3 months ago

    they told me no because it “wouldn’t make me better”

  • Profile picture of Holly

    Holly replied to the topic Difficulty Remembering the Past in the forum Adults ​With​ ​SMA 1 year, 3 months ago

    the same thing happened to me. i thought it was because of surgical complications but sometimes it feels like the memories are there and it just hurts to remember.

  • Profile picture of Holly

    Holly replied to the topic The Disability Concept in the forum Adults ​With​ ​SMA 1 year, 7 months ago

    i agree with ariana. i have an identity and a culture that Is unique to those around me. its also made me pay more attention to social issues and i feel like i’m a better person because of it.

  • Profile picture of Holly

    Holly changed their profile picture 1 year, 9 months ago

  • Profile picture of Holly

    Holly started the topic phone mount recommendations in the forum Adults ​With​ ​SMA 1 year, 9 months ago

    i’m looking for a new wheelchair phone mount, one thats easy to take off and put back on, bonus if I can attach it to my bed. any recommendations?

  • Profile picture of Holly

    Holly replied to the topic Keeping your feet warm in the forum Adults ​With​ ​SMA 1 year, 9 months ago

    Dennis, have you tried billy footwear

  • Profile picture of Holly

    Holly replied to the topic SMA Patients of Color? in the forum Raising Awareness of SMA 2 years, 2 months ago

    here are two girls

    https://www.instagram.com/nolimitsg2/?hl=en

    https://www.instagram.com/stella_lacaps/?hl=en

    Seriously though why are disabled poc so hard to find on instagram. it makes me a little suspicious.

  • Profile picture of Holly

    Holly replied to the topic States Reopening: What’s Your Take? in the forum Coronavirus (COVID-19) and SMA 2 years, 3 months ago

    I don’t know if I’ll wait for the vaccine, but I’m not going out any time soon

  • Profile picture of Holly

    Holly replied to the topic Looking for Books By Disabled Writers in the forum Disability in Media 2 years, 3 months ago

    sorry forget one
    The Girl From Aleppo, its a memoir from Nujeen Mustafa, a girl with cerebral palsy, who fled Syrian war in a wheelchair

    bonus: Just The Way You Arm by Alison M Boot, I have not read it yet. It seems to be a fantasy romance. I don’t know if its good or not.

  • Profile picture of Holly

    Holly replied to the topic Looking for Books By Disabled Writers in the forum Disability in Media 2 years, 3 months ago

    This Is Not A love Scene by S.C. Megale both the author and the main character have SMA

    Accidents of Nature, which takes place at a disabled summer camp by Harriet McBryde Johnson, a notable disability rights activist

    Good King Bad Kings by Susan Nussbaum, another activist, about a nursing home for disabled kids (kinda dark)

  • Profile picture of Holly

    Holly replied to the topic Jaco or IARM in the forum SMA Assistive Technology/Equipment 2 years, 3 months ago

    They’ve contacted me back. I’m going to pursue it further. It might be a bit cheaper.

  • Profile picture of Holly

    Holly started the topic Jaco or IARM in the forum SMA Assistive Technology/Equipment 2 years, 3 months ago

    Hi, a lot of y’all have tried Jaco right? Has anyone looked in into the IARM?

  • Profile picture of Holly

    Holly replied to the topic Ryan’s Robotics Episode 3: How I Acquired My JACO Robotic Arm in the forum The SMA News Today YouTube Channel 2 years, 4 months ago

    What about SSI and medicaid, how didn’t you loose benefits with fundraising

  • Profile picture of Holly

    Holly replied to the topic Ryan’s Robotics Episode 3: How I Acquired My JACO Robotic Arm in the forum The SMA News Today YouTube Channel 2 years, 4 months ago

    did y’all have to go through a dealer too?

  • Profile picture of Holly

    Holly replied to the topic Ryan’s Robotics Episode 3: How I Acquired My JACO Robotic Arm in the forum The SMA News Today YouTube Channel 2 years, 4 months ago

    How did you get it for 53,000? When I tried it was 80,000

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