Len Jax

Hi Sonsu,

I had edema in my legs and feet for 20 years before getting ALS. I used to wear thigh-high Jobst compression socks but can no longer get them on having ALS. If you have mobility, you might want to try the shorter compression socks if you can get them on. There are devices to aid in getting them on.

Things I did that…[Read more]

Hi JT,

Kudos to you for not caring what other diners think and enjoying your meal and the company of those you are with! I am in a wheelchair and cannot speak, but I can still feed myself. My motor control is somewhat compromised, so I often drop things and always get food on my shirt. I preemptively say I am sure I will be the first one to have…[Read more]

Hi Dagmar,

I used to shovel snow pre-ALS in Minnesota without a coat, just with a hat and gloves, because I would get overheated. Now I live in Missouri, which is temperate by my standards. If I go outside in the fall/winter, I wear a coat, hat, and gloves. If I get a chill, my jaws clamp tightly together, and I get stiff as a board and cannot…[Read more]

Hi Doris and Charles,

I had fallen many times for various reasons using canes and walkers. Falls are always scary, and I learned from each fall. Tuck, roll, protect the head and don’t try to break the fall with the arms. Thankfully I never had any injuries. I always tried to walk as much as possible with a good rollator to maintain that ability.…[Read more]

Daniel,

That was extremely helpful. Whatsapp appears to be a texting program, and I can do that from my phone and the Ipad or Td Pilot. That makes my choice much easier, as I also like Apple!

I still do transfers out of my PWC. Does the Pilot have a method of folding out of the way so I can stand up?

Thank you so much, Daniel; it is appreciated!

Len

Daniel,

Thanks for the response; it is beneficial. I have several more questions.

Does the TD Pilot do everything the I16 model did?

Why did you switch?

Do you have the mount for your PWC, and does it ever get in the way while driving?

Len

Hi Dagmar,

I got the 4th booster in one arm and the flu shot in the other! Had a little soreness on the second day in the boosted arm but no ill effects. The flu shot arm was sore for about 4 days, but I lived to write about it! Just kidding, of course. All Covid shots were Pfizer and no problems with any of them.

Len

Hi Pauline,

I have a Golden Model PR515. They have a lot of different models to choose from based on your size and the features you want. Sitting in it for TV watching is very comfortable, and I also sleep in it. I believe they have a 5-year warranty. I highly recommend them.

Len

Alan,

You are right, no one can tell you how much time you have left. The thing to remember is that no one does, even the healthiest people. I always try to live like today is the best day I will have. Sometimes I fail, but my positive attitude makes life more enjoyable than looking ahead in fear. That is a waste of the time I have left.

When I…[Read more]

Amanda,

Below is an excerpt from the memoir I have been writing since my journey began. I feel control of anticipatory or regular grief is an illusion. Grief is often a friend of mine, and I am grateful I have it in my life. It allows me to feel relief from the chaos, grow, and move on to a greater understanding of the world as it is! I have…[Read more]

Hi Nina,

As I said in my post, I have not used the bed much; I am a night owl and sleep in my lift chair for now. My wife goes to bed early and has to assist me into bed, but I get in the chair unassisted.

The gentleman I got the bed from related that his son was in bed most of the time for several years and never had bedsores. I think they…[Read more]

Hi Wendy, Bill, and Bill,

I have a slower progressing PLS, can only walk a short distance, can no longer speak, and am in a PWC most of the time. I could no longer get in bed or turn side to side. Wanting to be planful about the disease progression, I asked my ALS contact person if she knew of any available ICU beds. Luckily she knew of a…[Read more]

Hi Dagmar,

I have had PT twice weekly for the last seven years.  It is not in an ALS-affiliated clinic but one close to my home for convenience. They do communicate regularly with my neurologist.

When I started PT, I was walking with a cane, progressing to a walker six months later, and finally to a power wheelchair about six months after.…[Read more]

Creighton,

Love it! Love it! I think you will be a contender for The Country Music Awards ceremony next year! Your music is a genre I call “Depressingly/Optimistic!” It is based on the acceptance of life as it is, and the realization that life is still good. You are now on my playlist. You nailed it with the lyrics and the warmth of your video!…[Read more]

We got notice the second booster was available here in St. Louis and have an appointment to get it on May 2.  I had Covid before the vaccine was available, had all of the shots since they came out, and have had no issues with any of them.

I started occasionally catching my left toe stumbling as I walked, having difficulty stepping sideways – my upper body would move, but my legs would be a split second behind. Walking downhill was difficult.  Unrelated, but at the same time, I was having some memory issues, forgetting my wallet, leaving 20 pounds of meat out of the freezer, and…[Read more]