Recent content by whereswaldo

The clinic I attend, Forbes Norris ALS/MDA in SF, was part of a trial to put these in place. I believe the stopped offering them, as part of the trial, they didn't feel that worked well enough to go through the process. I said no and they did ask about it again.

I was told not to long after I was diagnosed, that about 25% body fat was a nice number. I have never been near that number and never will be, I was to active in work and life. If you can maintain a healthy weight, you will need to judge that, you will be ok.

Is it when you wake up or when you set up? Is your mouth/throat dry? In the morning when I wake up and sit upright to change masks, I have a hard time getting a deep breath until I can get my saliva going and lean back some. I do use the humidifier over night on low, any higher and I get to...

Just a FYI, if you mix things with water, warm the water up a little bit. It tends to thin it a little more, warm but not soup warm. My food was warmed up a little to much one time, I'll tell you what, that was a different feeling.

Is that "Commas save lives." or "Comas save lives." Double clicking or hitting a letter only once, can change what a word and sentence can mean.

A fall is a fall, how do you know when "that" fall is coming? We all know that ALS only attacks strong willed, independent people. But stubborn does not have to be a trait also. Kristina, don't be afraid of the wheel chair, it can give you independence you may not have known you lost. I guess...

I have used several, right now I have chin control with an attendant control on the back so that someone else can control. If you have a knowledgeable mobility person, they can find something that will work. They can get pricey, but the right people should know how to write it up to show need...

It may be partially due to muscle atrophy, your body needs your muscles to push fluids back up towards your heart. If you have less muscle to push, you will swell. If you can relax and put your feet above your heart, it will help with the swelling. I would talk to the folks at clinic just to...

Welcome to our virtual waiting room, the best thing here, there are no lines. Ask your questions or jump right in. You will get some honest and experienced answers. Just watch out for the ladies in the bar, they may want your drinks and snacks.

Silence Sometimes ignorance levels everything, never carry excuses. Ignorance

I use a Tobii for most of my talking, but I can get my point across when I feel a need. That is when she would like the silicone.

Don't tell my wife about the silicone, now that I don't eat, she might like that idea sometimes.

I honestly believe an ALS diagnosis is harder on the family than on the pals. Most times it is easier for a pals to come to terms with the journey ahead. But with all that being said, a diagnosis does not have to mean an instant death sentence, there can still be some quality life ahead...

Welcome and I'm sorry you have a need to be here. Coming here you will always have someone to talk to. It will take some time , but things should get easier. Make sure you get social security going. Read the stickies, in the yellow, they can be helpful for the journey ahead. And by all means...

Respironics has a couple that cover the mouth and also incorporate the nose into the top. You can wear glasses with both. The first is called DreamWear Full face mask. The DreamWear has a unique way to delivery the air, the hose connects on top of the head and then comes along the cheeks to the...