Barry Glaberman
Forum Replies Created
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Even the best doctors don’t have the answers to everything. I don’t agree that they should treat us like it is in our head. With MD alone, being that it rare in the scope of diseases, can have a lot of missed cues. I have been fortunate enough to have a neurologist who could recognize my having MD. However, I haven’t had an answer as to what kind of MD. The unfortunate thing is many MDA clinical doctors only specialize in a select kind of MD. Being rare and having over 9,000 different variations, you cannot expect them to know everything. The best you can hope for, is, a doctor to listen and then research your particular MD.
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I have spasms, not shaking per se, like in Parkinson. Because of this, I no longer drive. I never know when it is going to happen. It can be mild like when you get a chill or it can be violent. My wife refers to it as the bedrock twitch from the Flintstones. It is bad that I guess we have to make lite of it. She even says that I spasm when I am asleep. I wish I had an answer to it, but it is somehow related to the MD.
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I have thought about it, but because of being in the USA, I don’t think it is covered on Medicare. CBD oil didn’t do anything for me. For the most part, I deal with the pain. When it gets to me, I lie down for a while till my strength builds up.
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What doctors do say is that muscular dystrophy has no pain. BS! There is a lot of pain associated with muscular dystrophy! Much is due to the fact that muscles are atrophying. As the get weaker and smaller, they are causing strain on the bones and joints that they are attached to. Since pain is subjective, mine can be anywhere from a five to a ten, which is half of a normal person’s idea of pain. I don’t take pain medication because I don’t want the side effects of them. As it progresses, I am reconsidering it.
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This is true. However, going back to the late seventies and early eighties, there was a lot of things that had to be incorporated into the start of the ADA way before the government got to vote on it. Unfortunately with the government creating a negative aura, we have to fight with our negative to create a positive. In other words, the squeaky wheel gets the grease. Remember there are good and bad types of protests. I don’t want to het political. What is needed is a strong Lobby in Washington to counteract what they are trying to do to weaken the ADA.
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I think we have a better chance of witnessing a world miracle before the Industry makes our life easier! If they can rip off our medical providers and us because of need, they will. The main reason is the cost of supply and demand. economics folks.
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I no longer work because of the MD as well as several other illnesses. My last job was a manager of a hotel. I have worked in retail, wholesale, entrepreneur, janitor, technician, DJ, and delivery. It is important to discuss your illnesses face to face allowing a potential employer to see your capabilities.
Talking about your disability is a personal preference. Sometimes it may be okay and other times it is MYOB. Much of the time it depends on the work environment.
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I let my resume speak for itself. I did not mention any disability in my letter of intent either. I just showed up for my interview with my adaptive equipment for my interview. I focused on my abilities and strengths. There were questions about my disability, however, I tried to refocus on the job at hand. If I needed reasonable accommodations, I would discuss it with them, noting that I could perform the issential functions of the job. Not every employer is keen on this idea and expect rejection. It is hard to prove that they are not offering you a job because of any disability. I was in the work force from the time I was 15 until I finally had to medically retire in 2017.
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Although Tommy Hilfiger has a line of clothes, it would be great if it were affordable or at least covered by medical insurance. I personally couldn’t afford $65.00 for a shirt or more for pants. Another case of taking advantage of us.
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It is insane the cost of healthcare especially for cronic and and rare diseases with no cures. It is also disastrous if you have cancer. We have a school health plan that is state controlled, but they are not taking advantage of bulk purchasing. I mean each department ment in the state negotiates their own policy. My wife gets reduced cost for her part of the plan but has to pay the full amount for mine. This is a big chunk of money out of our budget since I can’t work and have limited funds thhrough SSA. We are contemplating divorce so we can afford to live. This tells you what kind of govenment is in the USA and what type of health care we have!