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Larry

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@netlar

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    Larry replied to the topic Accused of faking/ milking disability in the forum Mental Health and Positivity 6 months ago

    I used to care what people thought about my disability and how when I’m in my power chair that I do seem pretty normal sitting there, not anymore. Those people that think I am faking are not people I want in my life anyway.

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    Larry replied to the topic Breaking My People-Pleasing Habits With Self-Care in the forum Adults​ ​With​ ​Muscular Dystrophy 11 months, 3 weeks ago

    I have a wheelchair van fitted with hand controls and a power chair. I have no real excuse for not getting out more , other than the fact it’s easier physically to stay home. Due to years of self isolation I have no friends. But I do like many things. Movies, coffee shops, parks

    • Profile picture of Danielle "Dani" Liptak
      Danielle "Dani" Liptak replied 11 months, 1 week ago

      Hi, Larry. Thanks for the reply. I was wondering about your hand controls. Do you have to take a driving test for them? Are they similar to a joystick-like on a wheelchair or more a push and pull type apparatus?

      I understand getting out is difficult and for me going to a place by myself causes me anxiety, but I really would like to try and go…[Read more]

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    Larry replied to the topic Breaking My People-Pleasing Habits With Self-Care in the forum Adults​ ​With​ ​Muscular Dystrophy 11 months, 3 weeks ago

    I am similar. It was much easier to be that way when my condition was not very prominent. The last several years though, I have struggled with being isolated or not speaking up at all because I feel like I would just be a burden. So I hide in my bedroom and live a solitary life instead of putting myself out there. Getting just a bit better now but…[Read more]

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    Larry replied to the topic Career/Hobbies Basic question in the forum Adults​ ​With​ ​Muscular Dystrophy 1 year, 2 months ago

    Hi Leah,

    There are a few books I could recommend. Hard to limit them lol. “The Sound of a Wild Snail Eating” by Elisabeth Tova Bailey was extraordinarily, “Beneath a Scarlet Sky” by Mark T Sullivan was a good read if you like historical fiction, and the “Lunar Chronicles” series by Marissa Meyer was fun. It’s a sci-fi twist on the fairytale sto…[Read more]

    • Profile picture of Leah Leilani
      Leah Leilani replied 1 year, 2 months ago

      Thank you for the recommendations. Sci-fi always interests me as well as fantasy and adventure. I recently finished a good series called “The Program” by Suzanne Young. It’s a good one if you’re into corrupt government plots.

  • Profile picture of Larry

    Larry replied to the topic Career/Hobbies Basic question in the forum Adults​ ​With​ ​Muscular Dystrophy 1 year, 2 months ago

    I have rediscovered my passion for reading.  I joined a couple book clubs. It’s great. Another hobby I have plenty of time for is classical music. I have listened for years but I am going much deeper in my appreciation for the music.

    • Profile picture of Danielle "Dani" Liptak
      Danielle "Dani" Liptak replied 1 year, 2 months ago

      I, too, have purchased some books and started reading for pleasure again. Before reading to complete my master’s degree, I didn’t want to read for fun anymore. I recently got this book “Hell of Book” because my friend is dating the author, he is from North Carolina, and he recently won an award for it. It has been a great read! Do you have any…[Read more]

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    Larry replied to the topic Self Love With an Ever-Changing, Disabled Body in the forum Adults​ ​With​ ​Muscular Dystrophy 1 year, 2 months ago

    I don’t have trouble with body image, more with my abilities to do physical tasks.  I watch commercials and read about people and much of it is based on physical activity, which I am unable to do anymore.

    I know it is important to stay positive but sometimes it is hard when I see my body failing more and more.

     

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    Larry replied to the topic Deciding Between Taking Care of Yourself or Working in the forum Adults​ ​With​ ​Muscular Dystrophy 1 year, 5 months ago

    I used to want to work but not anymore. Fortunately I have the resources to not have to work. I spend time taking care of my body. I also spend my days pursuing personal enrichment through my hobbies. I don’t worry myself that I’m not making much of a contribution through working.

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    Larry replied to the topic Disability is Not a Bad Thing in the forum Adults​ ​With​ ​Muscular Dystrophy 1 year, 8 months ago

    I have talked to them. Does not appear to make any difference.

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    Larry replied to the topic Disability is Not a Bad Thing in the forum Adults​ ​With​ ​Muscular Dystrophy 1 year, 8 months ago

    There is a certain stigma though. My partner at times thinks I am just being lazy. That if I tried harder that everything would be much better.

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    Larry replied to the topic Settling for Bad Relationships in the forum Adults​ ​With​ ​Muscular Dystrophy 2 years ago

    I was alone before and it was very difficult. I know I’m a different person now, but everything seems like it would be more difficult. My fear is that I will go into isolation because it will just be too difficult to go out and meet people.

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    Larry and Profile picture of Leah LeilaniLeah Leilani are now friends 2 years ago

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    Larry replied to the topic Settling for Bad Relationships in the forum Adults​ ​With​ ​Muscular Dystrophy 2 years ago

    I think I did. Not abusive, but I definitely settled. I find it now very difficult to leave because of physical difficulties. I will have a tough time being single again.

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    Larry replied to the topic Having Assistance with Pleasure from a Sex Worker in the forum Adults​ ​With​ ​Muscular Dystrophy 2 years, 3 months ago

    Thanks for the post. Lot of people would not be comfortable bringing up this topic. Yes intimacy and being sexual are a basic human need, I completely agree. I am not sure there is a place that would provide that kind of service for a person with a disability. I have never heard of that. Sex in general can be such a taboo subject matter with many people.

  • Profile picture of Larry

    Larry replied to the topic Being the Tech Savvy Family Member in the forum Adults​ ​With​ ​Muscular Dystrophy 2 years, 4 months ago

    I am in a very similar situation. I am glad I can help others in my family, but do get it is tiring. They probably lean on me a bit too much. I have tried to step away though from helping them more so I can focus more on my health and what I can still do.

  • Profile picture of Larry

    Larry became a registered member 3 years, 4 months ago

    • Profile picture of Danielle "Dani" Liptak
      Danielle "Dani" Liptak replied 3 years, 4 months ago

      Welcome Larry! My name is Dani Liptak I am a forums moderator! 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…[Read more]

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