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    • #16304
      Leah Leilani
      Keymaster

      Mark, that’s good to hear that your boss is lenient towards your medical needs. It is too common that bosses are harsh and unaccommodating when it comes to disability. I’m sure your job takes a toll on your back muscles. What do you do to help those muscles? Maybe a back brace would help or a Theracane to loosen the tension and knots? If I’ve been hunched over for a while these things can help as well as doing a few stretches to realign my back.

    • #16279
      Leah Leilani
      Keymaster

      I know some of what you’re talking about Phil. My type of MD is invisible too. I do use a wheelchair when I’m out and about so I don’t have people ask me for help or give me looks when I park in the handicapped parking spot but if I’m shopping and get out of my chair to reach something, I can feel the stares.

    • #16225
      Leah Leilani
      Keymaster

      Pete, I still find myself battling against feeling like a burden but you’re right. There is beauty in helping someone else and both sides (able-bodied and the ones in need of help) should see that first. Like Hawkin said, helping a friend and asking a friend for help can actually improve relationships.

    • #16224
      Leah Leilani
      Keymaster

      It’s true, Pete. There’s too much of a stigma around needing a wheelchair from the able-bodied. It’s a shame and it needs to change.

    • #16187
      Leah Leilani
      Keymaster

      Glendalee, although I’ve never visited Hawaii and don’t know much about their available medical care, I do have Hawaiian blood and have many relatives in Hawaii. I can only imagine the lack of resources available but I commend you for not giving up and continuing to advocate for yourself. That is how the best things come to fruition, by arming yourself with knowledge and the will to help others.

    • #16168
      Leah Leilani
      Keymaster

      Phil, did you know your food was going down in an odd way prior to the test? It’s great to hear that you’ve had results with the exercises. I find it hard to know if muscles are actually capable of being strengthened with a disease like MD. I have problems with producing energy and whenever someone suggests strengthening a part of my body with exercise I tend to roll my eyes.

    • #16154
      Leah Leilani
      Keymaster

      Thankfully, I don’t live in an area that is prone to fires but the ash does travel to where I live and the sky has been very red colored lately making it look as if a permanent orange filter is covering everything. It’s almost nice that I’m forced to wear a mask because not only am I protecting myself from Covid but also from the ash particles in the air.

    • #16153
      Leah Leilani
      Keymaster

      Steve, do you mean you like buying clothes online. I do too. I find it a lot easier to make a good purchase online because I can really think about it and how it would suit me rather than having to make a snap decision  at a store and most likely having to return it. Thank God for online shopping.

    • #16152
      Leah Leilani
      Keymaster

      Hi there Charlotte! When we’re you diagnosed with CMT? Was is before or after you had your children?

    • #16037
      Leah Leilani
      Keymaster

      To be honest, I’m much more happy being home than going out than ever before. The itch to go somewhere or hang out with people has completely disappeared. I sometimes have to remind my mom or dad to put on a mask or bring their mask with them otherwise they may be around someone or go somewhere without it resulting in me having an anxiety attack, lol.

    • #16035
      Leah Leilani
      Keymaster

      I completely understand your wife not being allowed to be by your side but your dog? Dog’s can’t catch Coronavirus not to mention he’s a service dog and denying you your dog is illegal. I’m so sorry you experienced this, Pete. Ableism has been such a huge issue with healthcare during this whole thing and you’re not the only victim unfortunately.

    • #15962
      Leah Leilani
      Keymaster

      Hey Becky, one way you can get in touch with Ralph is through his Instagram @ralphyaniz. You and him would definitely make good friends. You share the same passion for change. There’s so much change that still needs to be implemented with Medicare, insurance and overall services for people with disabilities. I can’t believe a parent would get a PCA for there child with ADHD. To me, that’s just raising an entitled child that will never learn to be independent.

      • This reply was modified 2 months, 2 weeks ago by Leah Leilani.
    • #15955
      Leah Leilani
      Keymaster

      Yeah, at-home education does pose a big risk for kids with bad living conditions. If only we could actually count on Social Services to do their jobs correctly and accurately. I totally agree that money need to be put towards giving all kids access to technology for at home schooling.

    • #15954
      Leah Leilani
      Keymaster

      I’ve heard some sketchy things about Ellen so it doesn’t really surprise me. I was never really a fan of hers but I feel bad for the people that are. It’s always hard when someone you look up to or admire turns out to be someone they’re not.

    • #15906
      Leah Leilani
      Keymaster

      I have heard good things about these canes and since I’m not seeing a chiropractor right now I’ve definitely considered getting one.

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