Len Jax

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]