@len
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Len Jax replied to the topic Teeth and Bulbar ALS in the forum Living With ALS 1 week, 5 days 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 3 months, 3 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 6 months, 1 week 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 7 months 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 7 months 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 8 months, 1 week 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 8 months, 1 week 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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Len Jax posted a new activity comment 8 months, 1 week 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 8 months, 2 weeks ago
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Len Jax replied to the topic Difficult Topics in the forum Living With ALS 9 months, 2 weeks ago
Amanda,
I appreciate your, the sites, and pALS directness and insight! It is important to be realistic and plan for what is to come even though it varies for each of us. My wife and I sold our pre-pALS house as soon as I was diagnosed and moved into an ADA compliant house. We did not realize the scope of ALS at that time but knew it wasn’t going…[Read more] -
Amanda and
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Len Jax replied to the topic Have you had COVID? Share your experience and thoughts about it here in the forum Coronavirus (COVID-19) and ALS 11 months ago
Thanks for the setup Dagmar – as I said I had Covid in mid December. I had continued with my PT appointments twice weekly throughout the Pandemic as I felt I would lose what little ability I had to walk if I didn’t. A calculated risk I know, but one I was willing to take. At any rate therapy was the source of the virus. The symptoms initially wer…[Read more]
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Len Jax's profile was updated 11 months, 1 week ago
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Len Jax became a registered member 11 months, 1 week ago
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Hello Len,
I am happy to officially welcome you to the forum!
Dagmar 🙂 -
Hello Len, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[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.
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]
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]