Recent content by ReginaS

Hi, I am no specialist in these things -- for my PALS it would not have worked as the back of the seat does not recline. If your wife has core and neck strength it might work as long as she has that. My PALS loved his power wheel chair and would not have wanted to sit in something where he...

Hi Lucie, "After 3 assessments by the doctor assessing my strength and reflexes should I let go of this ALS concern?" - It would seem like a wise choice to do so. Time is too precious to spend it worrying. I used to worry a lot and found what Mark Twain says is really true: "I've had a lot...

"My neurologist said it wasn’t ALS because of how long I’ve had this problem." This is true. Believe them. "It actually started with a lot of pain in the front of my left foot" ALS does not start with pain. With ALS, foot drop can develop but once it's there it does not go away. It's not...

My PALS chose "no feeding tube". He was diagnosed w/ limb onset but honestly, bulbar either developed parallel or right after. He progressed fast. 16 months after diagnosis he died. He did was very slender. Nurses, physicians, nutritionists and then palliative care advised/urged him to get...

You might read this in other posts: we had all our DME in place before contacting hospice. Then called hospice organizations (there might be 3 in town) and negotiated with them that we could keep using the equipment. They did not let us use the same but wanted for us to give them back and...

Have been thinking about regrets: When it's something like a diagnosis and I have strong regrets - I might be trying to open a back door out of feeling so very helplessness towards the present situation - i.e. that I really cannot change it but deep in my heart I would love to do exactly...

For the sliding: have you tried to cut up a yoga mat and put the piece(s) on the recliner to prevent sliding? I used to do that for areas that were too slippery. Our recliner was too deep. We made a construction out of pillows and sewed a cover over the pillows that we fastened to the...

Hello Marnes, ALS is a tragedy - it was one for me too. I could not believe it until Tom was diagnosed. I think he was diagnosed early - much less signs yet. It must be extra hard right now with an 11 year old. My daughters were grown... and just out of the house so I could cry all I wanted...

I do not know what company Team Gleason went through but the company asked for measurements (many) and used software to figure out what would fit in our bathroom. I was impressed. If Team Gleason does not have the money they might be able to volunteer the name of the company who they use(d)...

If you are really interested and want to talk to them - they gave us a "youth" chair - Tom was rather slender and that helped as well. In our case there was not enough space between sink - toilet and bathtub. So that bathroom did not work. In the other bathroom there was barely enough space...

I just found the name of the manufacturer that we used: Nuprodx. Our bathroom was too small for showerbuddy and they had more variations.

For us it was pretty fast path to diagnosis once Tom had foot drop. He had been to GP and pulmonologist before to find the cause for changes w voice / hoarseness and they guessed GERD, asthma…. but pulmonologist already advised neurologist. Tom changed GP at the same time and the new GP got him...

We also had small bathrooms. We had reps from 2 different companies trying to help us figure out a system that could work and nothing seemed to work. Then someone told me to contact the Gleason foundation. The Gleason foundation put me in contact with a company in CA. A rep from that company...

Another viewpoint: Tom was OK in a manual wheelchair (we had one with big wheels in the back and needed that too) but they are really not too comfortable. Once he had his electric wheelchair it was way more comfortable and he had so much fun with it bc he liked to drive it, was very good at it...

a footnote to voice banking - Tom used ModelTalker on a pc, had bought new microphone to get good quality recording and the whole process was interrupted and came to an end bc ModelTalker recording did not work any longer. According to their support is was a browser update that made the whole...