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Len Jax replied to the topic Swollen Feet in the forum Living With ALS 2 months ago
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]
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Len Jax replied to the topic Do you change your eating habits when you’re out in public? in the forum Living With ALS 4 months, 2 weeks ago
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]
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Len Jax replied to the topic Winter is coming! What are your tips for avoiding weather-related ALS symptom aggravation? in the forum Living With ALS 4 months, 2 weeks ago
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]
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Len Jax replied to the topic ALS and falls in the forum Mobility Aides, Assistive Technology and Medical Equipment 4 months, 4 weeks ago
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]
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Len Jax replied to the topic Requesting tobii Dynavox Advice in the forum Mobility Aides, Assistive Technology and Medical Equipment 5 months ago
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
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Len Jax replied to the topic Requesting tobii Dynavox Advice in the forum Mobility Aides, Assistive Technology and Medical Equipment 5 months ago
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
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Len Jax replied to the topic Is anyone getting the 4th shot/booster? in the forum Coronavirus (COVID-19) and ALS 5 months ago
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
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Len Jax started the topic Requesting tobii Dynavox Advice in the forum Mobility Aides, Assistive Technology and Medical Equipment 5 months ago
Since communication is becoming more of an issue, I am proactively pursuing more advanced AAC than the app I have on my phone. I met with the Speech and OT people for an evaluation and to get a feel for the tobii dynavox models available.
The two models available are the I13, which is Windows-based, and the TD Pilot, which is Mac IOS-based. Both…[Read more]
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Len Jax replied to the topic What kind of power lift chairs are recommended by ALS people like me in the forum Mobility Aides, Assistive Technology and Medical Equipment 5 months, 1 week ago
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
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Len Jax replied to the topic Newly diagnosed? What do you want to know right now? in the forum Diagnosis Information and General Questions 5 months, 2 weeks ago
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]
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Len Jax replied to the topic Grief and our Mental Health in the forum Living With ALS 6 months ago
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]
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Len Jax replied to the topic Sleeping in the forum A Forum for ALS Caregivers 6 months, 1 week ago
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]
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Len Jax replied to the topic Sleeping in the forum A Forum for ALS Caregivers 6 months, 2 weeks ago
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]
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Len Jax replied to the topic Have you had physical therapy sessions for your ALS? in the forum Living With ALS 8 months, 4 weeks ago
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]
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Len Jax and
John McCormack are now friends 10 months, 1 week ago
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Len Jax replied to the topic I wrote a song for ALS Awareness Month in the forum ALS Awareness Month 10 months, 1 week ago
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]
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Susan and
Len Jax are now friends 10 months, 4 weeks ago
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Len Jax started the topic Botox in the forum Living With ALS 11 months ago
Has anyone used Botox injections as a treatment for spasticity? My neurologist recommended I try it at my appointment in December to see if it would relax the muscles in my legs and allow me to walk better. I currently am in a wheelchair 98% of the time but can walk a little and do transfers. I have very strong leg muscles, but it does not matter…[Read more]
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Len Jax replied to the topic Is anyone getting the 4th shot/booster? in the forum Coronavirus (COVID-19) and ALS 11 months, 2 weeks ago
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.
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Len Jax replied to the topic Where do you start? in the forum Diagnosis Information and General Questions 1 year ago
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]
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