mike-volkman
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Sometime in the late aughts there were some Mac programmers who came up with MacSpeech. It had some glitches, but it was OK. I graded it a B. It was bought out by the company that makes Dragon, for PCs only. There was no Mac version of Dragon until they bought MacSpeech and changed its name to Dragon Dictate. They did not improve it. They did not fix anything with it that needed to be fixed. Then in 2018 it was discontinued. Apple announced that later that year they would release Apple Voice Control. I anticipated that. I prepared for it. When I got it, I was appalled. It was horrible. I couldn’t operate my computer with it. I had to uninstall the system upgrade and go back to Dragon just to continue my life. I waited two more years. I had started to see scuttlebutt saying that there had been much improvement. I waited a little longer before I had to take the plunge. I hate Apple Voice Control. Just as you wrote, it doesn’t understand much of what you say. Its biggest difference with Dragon/MacSpeech is that the eggheads who created it programmed it to accept one pronunciation for each of the 600,000 words in the English language. MacSpeech understands that there are many accents and dialects. When you installed MacSpeech you had to read through some stories so it could adjust itself to you with a voice profile for each individual user. Apple Voice Control doesn’t do that. In New York, khakis are pants. In Boston, that’s how they say car keys. I have written dozens of emails to the people at Apple. They don’t do anything. I grade Apple Voice Control D minus.
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10 years ago they made a case for putting in a G-tube right after they installed a tracheostomy. The reason that they gave me was that there is a tendency for people with a trach to aspirate food and liquid. That is not the reason why I went ahead with it. I remembered later that other friends of mine who have a trach did not also have the G tube and didn’t need it. I got it because I have problems with my teeth, I need to purée everything I eat, and I was under the impression that this way would be easier.
Medically, there may be nothing wrong with using a formula for all nourishment. They don’t want us to use regular food because they say putting it through the tube could lead to infection. That means the science about this is still very primitive. Everybody constantly hears from their parents, their teachers, doctors, and health reporters how important a balanced diet is with things like fish, olive oil, walnuts, and such. Why can’t they put that into the formula? All the formulas out are there based on milk protein with some variations in things like sodium, sugar, fiber. But once they send you home with that G tube, you have to sign a contract that you will take more than 50% of your nourishment with the formula through the tube.
It was OK. Not great. It is always sticking out and in the way. There is a plastic circle that is supposed to be some kind of stabilizer to hold it in place. The balloon on the inside of your stomach has to be right up against the wall, otherwise it leaks. Anything you eat or drink could end up in your lap. That stabilizer doesn’t have anything that grips it tight on the tube, so it slides away. After three years, it was not really doing anything to hold the tube in place. And here is another thing that is a big concern if you have SMA: no body fat. The total distance between the inner wall of my stomach and the outer skin was 1.5 cm. There was where and tear on my stoma. The tube I started with was a size 20. Three years later I had to move up to a size 22. One day I was in the hospital for something else and it fell out. They didn’t have a size 22. A 24 went in easily. Even so, it was at the point where I couldn’t keep food in. I went to the ER after three days of malnourishment with a heart rate of 36. I had already decided to get rid of the G-tube and go back to full-time purée. It seems simple, doesn’t it? I tell the doctors that I need to close that hole and get some protein in me. They wanted to admit me and give me IV drugs. I was incredulous. That they changed their minds and sent me home, still starving.
The surgeon at first felt as if the surgery I would need to close the stoma would be too risky for me. For the next two years I had to keep it in there just to plug the hole so I don’t starve. July 16, 2020 I had to go in for something else, a kidney stone. The floor doctor saw the stoma and was very nervous about it. He got the surgeon on a Sunday morning, who suddenly changed his mind about doing the surgery. As it turns out, not only was it not risky, but he honored my request to do it under a local. Easy Peezy. Everything is as it was before I got the G-tube, with everything puréed. If and when I can’t do that anymore with further atrophy taking that away from me, I will probably go through the other option for nasal-gastric feeding instead of the G-tube.
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They are the only pharmacy under contract in America to sell that stuff. It could be worse. It could be better. If you order by phone they follow a script that treats everyone as if they were a new customer, which wastes enormous amounts of time. I have been taking it over four years, and I’m on dose number 1,494. They always ask how much you weigh. That’s none of their business. It is so much quicker and easier to order online, but now there is this new thing where your browser can’t find their website to be secure and won’t connect you. They are supposed to send me email when it is time to refill my subscription, though this past year that automated reminder has not been functioning. If nobody mentions to me that I am down to my last bottle, I won’t remember.
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The world is ruled by nondisabled people who are all trained falsely to believe we are all incapable and incompetent. They want to maintain a status quo with an old system that uses us as a commodity so that they can earn profit. In that system, one hand washes the other. So either they don’t know what to do with you or they make sure you go into a nursing home or use a traditional medical-model agency.
Disabled people developed a new system that started in New York City in 1977. Consumer-directed personal assistance gives you total control over everything from recruitment to hiring to training to management to supervision to termination. In better states like here in New York, we have not-for-profit fiscal intermediaries, most of which are programs within independent living centers as part of their movement to end discrimination on the basis of disability in the community. Social workers for the county pretend they don’t know anything about this because they want to steer people towards the agencies. If you call your local independent living center you can find out about CDPA.
It used to be easier to find quality workers who wanted to do this job who are good enough, trustworthy, and reliable for you to feel comfortable allowing them into your home to touch your body. The nursing home industry is at war with us. They want profit. We want freedom. They have enough money to pay for lobbyists who lie about us in every state capital and in Washington. They say that home care expenditure is out of control. That’s us they are talking about. To the untrained eye, it looks expensive. That is not the whole truth. If we are denied home care, then we are forced into nursing homes. The price tag for that is between three and four times! Because this is not personal to the nondisabled people who run the show, it means nothing to them. And because disability scares them so much, they hate talking about it at all.
So everybody participating in this discussion should join the fight wherever you are. We need to grow the consumer-directed program. We collectively save billions of dollars by staying out of nursing homes. Because we are ignored so much and because most of us can only get this program by being on Medicaid, we have no control over how much our PAs get paid, which is not a living wage. That is offensive. That is insulting. It is also why very few people applying for this job today are not nearly as good as the people we got even 10 years ago. But the wages are so low that the people we would prefer to choose are making choices to work where they are better respected.
Here in New York, there are 250,000 consumers in the program and over 300,000 workers. This is nothing to sneeze at. Still, we have a war on our hands and our choice is simple: win or die. Join the fight.
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20 years ago I set up profiles in the dating websites. I did it both ways, not mentioning my disability and writing openly about my advocacy work. It didn’t seem to make a difference. It’s easier for women because guys always make the first move. My close friend posted her profile. Guys responded to her picture and didn’t even read what she wrote about her disability. When they contacted her, the correspondence continued until they got to that one thing. Then they disappeared.
This is the important part: don’t be scared. If just mentioning your disability chases people away, consider that to be a filter protecting you. The perfect is the enemy of the good. If they are prejudiced enough not to even give you the time of day, then that is a lot better than wasting months or weeks with these jerks and having them break your heart later after you have already invested much of yourself into them for nothing.
And like Dr. Ruth said on the radio back in the 80s, your chances are much greater if you get out there and get involved in activities which attract people who have things in common with you.
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nine years ago I got a G-tube. By the way, if you see any spelling errors is yours it is because Apple voice control is horrible and I don’t have the time to be particular about this writing. Anyway, the idea of the tube it’s a good one, but for me it turned out to be a little bit more trouble than it’s worth. Apparently, because there is hardly any body fat around my internal organs, over Time my stoma war out. If it doesn’t seal and round the G-tube, eventually everything I ate or drank end up in my lap. Hi was malnourished. My heart rate was down to 36. When I went to the hospital, they wanted to give me drugs. All I said was that I needed protein and it was imperative to close that hole so I could eat. What do I know? I’m just A hopeless cripple who didn’t go to medical School. They changed their mind in the middle of the night and instead of admitting me they sent me home. With a low heart rate add in spite of the explanation I gave them which anybody’s mother would agree with wholeheartedly. Distance from the inner wall of my stomach to the epidermis is 1.5 cm. If yours is similar, then I would caution you about getting hey a G tube. Another thing – everything you have heard all your life about a balanced diet for proper nutrition you can forget about. With a G-tube all you get is formula. It is a milk based formula with no Broccoli, spinach, hamburgers, salmon, walnuts, apples, Olive oil, multigrain bread, bananas, or any anything else.
MacSpeech had its flaws, but it was way better than this Apple Voice control. My apologies for the failures above.