Recent content by John1

If you want real mobility in the house consider a small mobility scooter like a Pride Go-Go as an interim device before a wheelchair. They have several advantages over a wheelchair including much lower cost ($1000), lightweight and easily moved to a car by a caregiver, easy to get in and out of...

I wouldn't read too much into the 6% improvement. As others have said, time of day, how you feel that day and how you take the test can all affect the results. I have seen a modest improvement a few times at 6 month intervals but the overall trend has been down.

"I have a theory ( mine only - large grain of salt) that those with upper motor neuron dominant ALS fare better with the higher levels of exercise". Interesting idea Nikki. I am UMN dominant with very few fasciculations. I have a recumbent exercise bike that I use a few times a week for about...

Hi Buckhorn, I purchased a TEMPUR-Ergo™ Plus queen size Adjustable Base a year ago. Bought it locally (in Arizona) from Sears and it cost $1400 plus taxes and included delivery and setup. The latter is not minor as the bed is extremely heavy. We use our existing mattress. Pluses: - The remote...

Hi Starente, I certainly echo Barbie's recommendation to buy a mobility scooter. They are cheap and extend one's mobility tremendously over walkers and canes, both of which I was using when I rented one to try it. I was sold. My personal preference is a 3-wheeled Pride Go-Go Elite Traveller -...

Hi Starente, I had good luck using http://disableddealer.com/item.asp . You can sort vans by price or state. There are both private and dealers selling there. You don't need to feel restricted to buying locally. Ironically, I live in northeastern Canada and the van I bought was in San Diego...

I still use scooters. At home I use a Pride Go-Go Elite Traveller and have an older one for backup. They are very inexpensive compared to wheelchairs.

We all know what a threat pneumonia poses to PALS. I had a visit with a speech pathologist today and we discussed a broad range of ALS-related matters. She asked me whether I had suffered from pneumonia. I replied that I hadn't and in fact had developed almost no colds in the past several years...

Thanks for the wonderful description. We'll be there for a few days in July - a very quick visit - and you've increased my anticipation. We won't have our van, only a rental car from Calgary, so I will tour Yellowstone on my little Pride Go-Go scooter.

Thank for the link Nikki. It sounds like they work for some and completely miss for others.

Susan, I am very sorry to hear of Rob's passing. He was one of a kind and had unquenchable faith. My deepest condolences to you and your boys. John

I am very sorry for your loss of your beloved husband. My deepest sympathy to you and your sons.

Losing 22% in the first year and then only another 8% in the following 16 months with the pacemaker is impressive. Let's hope the trial can demonstrate similar numbers on most PALS. Have you heard any results of other PALS in the trial? John

The self-driving cars will be a boon for PALS and seniors. Wish they were here now and not in another 10 years.

Dj, I listened to the DPS webinar today. One of the things they are trying to determine in the current trial is whether the rate of FVC loss actually declines with those using the pacer compared to similar PALS not using it. Does your wife have good FVC records since (or possible before)...