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That sounds illegal, but again I am sure doctors have a way to avoid such lawsuits. I hope you can find a way to make sure you get a diagnosis and peace of mind of finally knowing what type of MD you have and start working with that organization to get you into trials or funds to assist you.

I agree! What people think of me is none of my business; now, if they approach and say something to me, I guess they made it my business! But I need a good response that hopefully resonates with them and makes them think twice before approaching and speaking on things they know nothing about!

My lazy primary doctor refuses to test me for anything.  He says I do not look like I have any problems. That is the biggest problem with Samaritan/SS/UHC insurance, that the support and approval of the PCP is required to get any medical treatment. I am dying of LGMD, GSN, MSN, CMD and others, but the PCP just collects money for telling me it is…[Read more]

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.

Wow, Pete, great response! I stood out of my wheelchair, and someone yelled, “it’s a miracle” luckily, I was with my friends, who ripped the guy a new one, lol.

Once when I stood up in a public space to reach something, some guy said “Nobody asked me, but it seems to me, you don’t need that fancy chair.” I have often felt that type of a remark from bi-standers. I said, “That’s why nobody asked you!” Let them walk a mile (or 10 steps) in my shoes and I bet they would want some way to get around and…[Read more]

I don’t know about the body not meant to take medications. I take polyethylene glycol (Miralax) daily ever since my large intestine stopped functioning years ago due to my muscular dystrophy. This medication keeps me from needing surgery to connect my intestine to a bag, which is obviously much more invasive. We all often take pain relievers to…[Read more]

WE RAISED CLOSE TO 5,000 DOLLARS! It was a fantastic evening! We had food, drink specials, raffles, five comedians, and an almost full house! The bridge was lit orange as well! I can’t wait till next year to do it bigger and better! I will most definitely start earlier in my planning. If anyone wants fundraising advice, I would be happy to help…[Read more]

Yes, to all those things, but right now, I can’t even get Numotion to send me the itemized recipes so I can give them to the city’s insurance/ lawyers. This is because it has been SO FRUSTRATING!

It was a bit of both, a difficult part to find and a rip-off. I am still waiting for some features stuck in China but hoping they will make it this way soon!

You’re right, Ian. It is been hard to get over. In fact, I woke up the other night thinking that I smelled smoke again and had to walk around my house to make sure that everything was okay. Jeez, it’s almost like which one costs more-the insurance or a new wheelchair? It’s similar to what came first, the chicken or the egg, haha!

Thank you, Pete! My thoughts exactly about the wheelchair. People always talk about what they would grab in case of a fire or earthquake. But in reality, it’s yourself and your family that’s most important. They did catch the person who did it and he was out on parole so I hope he predict he got quite the punishment.

I wasn’t even aware you could rent a part for a wheelchair! That’s great to know in case something breaks. $400 is a lot in my opinion though. I’d love to know the reason behind that price point. Perhaps the joystick was difficult for him to acquire or he did purely rip you off. I wouldn’t put it past people these days. Hopefully it can be written…[Read more]

I always fear something like this happening. Cities never take care of important stuff like this until someone gets hurt. I’m glad you came out okay but I know that your chair probably took a beating. Have you gotten someone to come a fix the damages to your chair? Could the construction company cover the cost to fix your chair?