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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 1 month, 1 week 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 2 months, 2 weeks 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 2 months, 2 weeks 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 3 months, 1 week ago
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Len Jax started the topic Botox in the forum Living With ALS 3 months, 2 weeks 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 3 months, 3 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 4 months, 3 weeks 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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Len Jax replied to the topic Modifying your Home in the forum Living With ALS 5 months, 2 weeks ago
Hi Nina,
I am glad the post helped; it is so hard to know what products are out there and which will help your situation. I was lucky to find Handicare in St. Louis; they manufacture slings here and have a showroom where you can try out all of their products. They don’t sell from this showroom but will refer you to the nearest dealers. I…[Read more]
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Len Jax replied to the topic Modifying your Home in the forum Living With ALS 5 months, 3 weeks ago
Hi Kris,
I was diagnosed in 2014, and we built a ranch, ADA-compliant house in 2016.
The bathroom is one of the most important rooms for a person with ALS, so you are wise to plan accordingly. At this time, I can walk/shuffle about 25 feet with my walker, but I spend about 95% of the time in my Permobil power wheelchair. I have good arm…[Read more]
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Len Jax replied to the topic You're Not You in the forum ALS In The Media 6 months, 1 week ago
Amanda,
I did not watch “You’re Not You,” but I usually do like movies or documentaries about ALS. Strangely, they often provide comfort to me.
I recently watched the PBS point of view (POV) special “Not Going Quietly.” It is the story of Ady Barkan’s life, a political activist. His life was turned upside down when he was diagnosed with ALS s…[Read more]
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Len Jax replied to the topic Skin pigmentation/ dark patches in the forum Living With ALS 6 months, 1 week ago
Sonsu
I had dark patches of skin in front of my ears and on my ankle/feet area. My fingernails were also darker than normal. Along with this, I was always fatigued. Found out it was because I had Hemachromotis, which is a hereditary disease. This caused my body to retain too much iron – my ferritin level was off the charts. Luckily I caugh…[Read more]
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Len Jax replied to the topic Teeth and Bulbar ALS in the forum Living With ALS 7 months ago
Marianne,
I, too, have difficulty with biting my cheeks in the rear. It seems worse when I eat salad, which requires more chewing but is happening more with other foods. I find my front tooth sometimes catching my lip as it has continued. As you know, once you bite your cheek, you are prone to doing it again and again. Frustrating and pa…[Read more]
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Len Jax replied to the topic Is this more progression? in the forum Diagnosis Information and General Questions 10 months, 2 weeks ago
Hi Lisa,
I am so sorry your are going through what you are at present. It seems to be grabbing you and shaking you to your core, which is understandable.
I was reading your post and your replies to some of comments that you made. What you said in two sentences in the middle of your reply 2088 was telling and might be the key to the anxiety of…[Read more]
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Len Jax replied to the topic Help with difficult transfers in the forum Living With ALS 1 year ago
Hi Nina – I can still do transfers myself but anticipate that I won’t be able to for much longer. I live in the St. Louis MO area and two years ago I researched sit to stand and Hoyer type mechanical lifts in the area to plan for the inevitable. I found a company called Handicare that has some awesome equipment and a showroom here. You can ma…[Read more]
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Len Jax replied to the topic Do people treat you differently because of ALS? in the forum Living With ALS 1 year, 1 month ago
Pepper – I agree that it is all about acceptance and perspective – it frees the soul and puts you in a much better place. You are a true optimist!
Carolyn – Fading into the background with the Grands is such a sad event as are all the milestones associated with ALS. We all have our ups and downs and how we deal with them determines our day. …[Read more]
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Len Jax replied to the topic Do people treat you differently because of ALS? in the forum Living With ALS 1 year, 1 month ago
I have been all over the place in dealing with this as my speech is now very compromised. I was at the grocery store about two years ago at Christmas time and commented to the service desk person that the Salvation Army bell ringer had a great voice. She was like a deer in the headlights and said, “It is good to see you again too”! I just la…[Read more]
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Len Jax posted a new activity comment 1 year, 2 months ago
No, mine also started in my left foot. I still have very strong muscles they just don’t work for walking. ALS is such a quirky disease, no one ever knows what they will get. I feel for you not having the ability to eat normal food. Was the EyeGaze computer hard to learn? I’m guessing that you were very motivated to learn because your options…[Read more]
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Len Jax posted a new activity comment 1 year, 3 months ago
I am currently a wheelchair most of the day but can still walk a little with a walker and do transfers to a lift chair or to the shower. My legs are very strong yet but ability to walk is very compromised. I still can leg press 400 pounds with both legs which is good but down from being able to do that weight with one leg. I do need a lot of…[Read more]
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So, your ALS started in your upper body? Mine started in my left foot. I can’t eat or speak because I’ve had a tracheostomy. I can’t move anything except my head. I’m able to “talk” to you because I have an EyeGaze computer. I really miss food, but I’m also very happy.
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No, mine also started in my left foot. I still have very strong muscles they just don’t work for walking. ALS is such a quirky disease, no one ever knows what they will get. I feel for you not having the ability to eat normal food. Was the EyeGaze computer hard to learn? I’m guessing that you were very motivated to learn because your options…[Read more]
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It was difficult to learn at first, Now that I’ve mastered it, I keep myself entertained for many hours. I have my EyeGaze on from approximately 3-10pm. I write my blog, read a lot, answer emails, write, go on Facebook, and more! My husband died in 2018, and he left me taken care of. I had an EyeGaze before but it was hard without a stand. My…[Read more]
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Len Jax posted a new activity comment 1 year, 3 months ago
Hi Jennifer
Yes, I too am a pALS. I was diagnosed in 2014 with PLS but it was upgraded to ALS a few years ago. I see you are a new member to this site – I think you will find it a good site for information and support. From your blog I see you have had quite a journey. Welcome.-
Thank you for the hardy welcome, and for writing me back! Where are you on your ALS journey?
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I am currently a wheelchair most of the day but can still walk a little with a walker and do transfers to a lift chair or to the shower. My legs are very strong yet but ability to walk is very compromised. I still can leg press 400 pounds with both legs which is good but down from being able to do that weight with one leg. I do need a lot of…[Read more]
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So, your ALS started in your upper body? Mine started in my left foot. I can’t eat or speak because I’ve had a tracheostomy. I can’t move anything except my head. I’m able to “talk” to you because I have an EyeGaze computer. I really miss food, but I’m also very happy.
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No, mine also started in my left foot. I still have very strong muscles they just don’t work for walking. ALS is such a quirky disease, no one ever knows what they will get. I feel for you not having the ability to eat normal food. Was the EyeGaze computer hard to learn? I’m guessing that you were very motivated to learn because your options…[Read more]
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It was difficult to learn at first, Now that I’ve mastered it, I keep myself entertained for many hours. I have my EyeGaze on from approximately 3-10pm. I write my blog, read a lot, answer emails, write, go on Facebook, and more! My husband died in 2018, and he left me taken care of. I had an EyeGaze before but it was hard without a stand. My…[Read more]
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Jennifer Zink and
Len Jax are now friends 1 year, 3 months ago
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