I Discovered -
That doctors don't know anything about ALS. It's possible they don't know much about other illnesses too. That's why we, the sick, have to stand guard, and help ourselves.
That you can both eat or drink a vegetable salad. "I" put in a blender: tomatoes, cucumbers, carrots, celery, parsley, red pepper and cilantro, with a little water, and "shoot" it directly into my stomach (through the feeding tube - R.S.).
That there is no need to drip the food and water over an hour, when you can pour the same quantity into the stomach in 2 minutes.
That for those in the starting stages of the disease, I recommend to sit rather than lie in bed. One can sit in bed too, but it's better to sit in a chair with the legs reaching the floor.
That I tried to say the 'a,b,c' and failed. I didn't know where to place my tongue. To the "newbies", continue to say words, even without vocalizing, so you don't loose the ability to talk.
That exercising isn't a punishment. It helps the blood flow and keeps the muscles toned. Don't depend on physical therapy. I'm allotted 40 minutes per month. Exercise every day.
That a cup of fresh tomato juice is a good replacement for laxative.
That doing something to take your mind off your situation, like blogging, does the job.
That taking a shower in the shower is much preferred to washing up in bed.
That it's better not to wear a diper. It's sufficient to spread it under you.
That you need to drink 6 glasses of water a day.
That it's senseless to try to extend your life by 2 months, while destroying your liver. That's why I stopped taking Riluzole.
That you can use a cough assistant machine instead of "Deep Suction."
That it's not worth it to get depressed, you need to get out of it too.
That we are not dying.
___________________________
Translated by: Rina Shapira
Original Hebrew post at: 462.גיליתי on 4/4/13
That doctors don't know anything about ALS. It's possible they don't know much about other illnesses too. That's why we, the sick, have to stand guard, and help ourselves.
That you can both eat or drink a vegetable salad. "I" put in a blender: tomatoes, cucumbers, carrots, celery, parsley, red pepper and cilantro, with a little water, and "shoot" it directly into my stomach (through the feeding tube - R.S.).
That there is no need to drip the food and water over an hour, when you can pour the same quantity into the stomach in 2 minutes.
That for those in the starting stages of the disease, I recommend to sit rather than lie in bed. One can sit in bed too, but it's better to sit in a chair with the legs reaching the floor.
That I tried to say the 'a,b,c' and failed. I didn't know where to place my tongue. To the "newbies", continue to say words, even without vocalizing, so you don't loose the ability to talk.
That exercising isn't a punishment. It helps the blood flow and keeps the muscles toned. Don't depend on physical therapy. I'm allotted 40 minutes per month. Exercise every day.
That a cup of fresh tomato juice is a good replacement for laxative.
That doing something to take your mind off your situation, like blogging, does the job.
That taking a shower in the shower is much preferred to washing up in bed.
That it's better not to wear a diper. It's sufficient to spread it under you.
That you need to drink 6 glasses of water a day.
That it's senseless to try to extend your life by 2 months, while destroying your liver. That's why I stopped taking Riluzole.
That you can use a cough assistant machine instead of "Deep Suction."
That it's not worth it to get depressed, you need to get out of it too.
That we are not dying.
___________________________
Translated by: Rina Shapira
Original Hebrew post at: 462.גיליתי on 4/4/13
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