Recent content by BetsyB

I am still breathing fine but my progression has been fast and I am doing my advance directive now and trying to plan a fast, cheap, and comfortable death.Thank you all! B

Sorry to change the subject somewhat but I hope to get a trach but no vent. Does this ever make sense? I thought this way because:1. I cannot get benefits to pay for a night caregiver.2. it is illegal to detach a vent here in Israel. 3. I felt panic when I tried on a bipap mask once. So if I...

My caregiver brushes my teeth wit baking soda.good.

Ok guys,I hear you.Will discuss with nurse. Carry on, Betsy

hello all. i have limb onset, can still eat most things, do not want a PEG yet because I am plump and not losing weight. but i cannot swallow pills. so my caregiver grinds up my neudexta and gives it to me with applesauce and that is fine. but if we try the same thing with rilutek, it makes my...

I've lost movement in my hands recently so I switched to a fancy hi tech head mouse from Quha Zono;it has a gyroscope inside so it is good to use anywhere . I point mouse at an on screen keyboard from Click 2 Speak. Will transition easily to eye gaze soon.

For people who can still swallow, or with peg, I recommend taking 1/2 glass of water first thing every morning, with 1 tablespoon of olive oil and one quarter lemon. Warm water is best. This concoction causes the secretion of bile from the gallbladder, which lubricates the entire intestine. It...

anyone here have the neurologists tell them that extreme stress in their life may have caused or triggered their ALS? I would like to know the name of any neurologists who have said that. Someone "on this forum" wrote that some time ago, but I cannot find the post. Kind regards to all, Betsy

Does anyone here know of an ALS specialist neurologist who works as an expert witness? It did not matter where they are. I'm also interested in learning of any lawsuits that claim certain events or exposures caused/triggered ALS. Even if they were not successful, I would like to know if any such...

Patient Access to NurOwn® - BrainStorm

gooseberry, i have been doing most of my own work and self-advocacy while i still can. both ALS clinics here, and my family doctor, operate by email. but it does not mean i can actually land a clinic appt without a great deal of pestering. i will soon need to pay a helper unless i get into...

thanx all for your comments. i know all about PBA, i have explained it to kids and mental health pros. if i could get a clinic appt i would ask about neuudexta. clinic is unresponsive, will have to try harder to get their attention.

hello all, i have limb onset that has now progressed to where even a little walking is very tough. my voice is weakening and i am laughing and crying too much. i take herbal medicine for the crying. i also see a therapist once a week and am making a great effort at self-caring and fun projects...

the device he made is similar to Ptosis Crutches, used to assist elderly victims of “drooping eye” conditions ptosis and myasthenia Gravis. https://en.wikipedia.org/wiki/Ptosis_crutches

here is an article about an israeli doctor who invented a solution to this problem. Quick-thinking doc helps ALS patient see a better future | The Times of Israel i will try to track down this doctor's contact info, but meanwhile perhaps a local opthamologist could help with a similar device...