Recent content by catcaniac

Hal, just wondering how the journey with the vent is going. My husband continued with the rapid progression and has lost all movement now including his eyes. He is still able to cry at things that mean something to him and we listen to Carolina games and movies. I am hoping that you are...

The baby powder approach is the only way we can get shoes on my husband. He has lost all ability to assist us but it works great and his toes stay comfy.

Please tell him not to be discouraged. My husband's trache surgery was over a year ago. He had a few scares with pneumonia in the beginning months but then things finally evened out. The first part is the hardest. Tell him we are thinking about him and to stay strong.

Yes, and Tobii took control of my system a few times and fixed a number of issues wirelessly. It was really interesting for me to watch. They were quite helpful and had a number of good AT suggestions.

My husband also has been on a vent and can't breathe without it. When he is without oxygen, he does great most of the time and his stats don't drop. But we know that any time he doesn't have it for hours, what ends up happening is that he begins to drop stats rapidly all of the sudden. This...

Just on a side note, even though my PALS can no longer use the eyegaze on the Tobii at all due to loss of tracking with his eyes, as he got weaker with the eyes I was able to calibrate it with my eyes and it still worked when he focused on the alarm screen.

Sorry to hear about your situation. We are struggling with the same thing. I wish I had answers for you but I have been trying to think of any creative way for my husband to tell us anything. He has lost all movement including reliable control of blinking or moving his eyes. Sometimes he can...

My husband is diagnosed with ALS, we live on the coast about 2 and a half hours from you.

I did buy the Alkamax and still have some. We kept checking his pH but did not find that it was out of the norm so we did not give the meds.

My husband's ALS started rapidly after a grand mal seizure completely unrelated to ALS.

I just wanted to get some feedback on PALS progression. From what I have read in the past, eye function and bladder functions are generally unaffected in ALS patients. My husband was diagnosed last December and had been experiencing symptoms since last June. He has been trached and ventilated...

My husband has spiked a fever almost every day since February of this year. He goes on and off antibiotics almost constantly. His is mostly due to trache infection or pnuemonia.

We use the Tobii eyegaze computer system. It has a program called Sonokey that has a screen that we have customized with alarm buttons all over it so all he has to do is focus anywhere on the screen with his eyes and an alarm goes off. Personally, my husband has trouble even with his eyes so I...

Before you stop going to the clinic, I would make sure that you add an excellent pulmonologist to your list of support. That will be the most important doctor in the end for ALS because the muscle problems are really something they just manage but can't really stop from regressing. The...

We use a combination of 2 tsps of liquid Colace every day and a Senacot every other day. Seems to make him go pretty naturally.