Chuck Kroeger

I have been tried to get it to clinical trials but with by vital lung  capacity at less than 50% and having been diagnosed 2 years ago I don’t qualify for any of the trials that I’ve seen.  at least none in the midWest.   traveling now would also be very difficult

I was diagnosed with ALS about 2 years ago and initially it was really tough but I was still able to walk and use my arms and breathe without a breathing assist machine except at night.  as I progressed to the point that I can longer walk and I can no longer use my arms . barely use my hands and am on breathing machine full time, I doubt if I go…[Read more]

I have been excluded from trials because my vital lung capacity is less than 60%. I missed one trial that we thought might work here in the mid West because of a few percentage points.   Very frustrating

Voice activated devices such as voice activated recliner that I sleep in at night are great when the Wi-Fi is working. what a mess and a real  pain when the Wi-Fi is down.    I’ve slept in my wheelchair 3 nights because of Wi-Fi issues.   hopefully we have those issues resolved.    Voice a activated lights in the kitchen are a great help too si…[Read more]

Ketamine, PrimeC, NU9,  nurown… So many things come out that sound promising that turn out to be less than effective.  Its hard to get excited when you read about the newest wonder drug.  Can only hope and pray that one of them  will actually work the  way the initial experiments say it can

I would have taken better care of my fingers and toes through stretching and exercise to hopefully keep them from curly into practically useless appendages

I would have started using my power wheelchair sooner to conserve energy

I would have started selling off fishing gear and other items that I will no longer use that are now left up to family…[Read more]

If I get the vaccine and survive possible side effects, my life will still be about the same.  because the vaccine is not a 100% sure thing, many friends still will not come around for fear of bringing me a virus.   Hate to be pessimistic but life keeps getting tougher.   at least I could go to the stores or sit out on the back deck when the weat…[Read more]

I totally understand Cindy’s point of view as I’ve pretty much lost ability to walk or use arms and my diaphragm is about gone.  Been on trilogy for over year.  you can’t scratch that itch or rub that tickle.  And you just watch people around you that have to set aside their lives to take care of you.    it’s tough..    Want to be optimi…[Read more]

<p style=”text-align: left;”>The Gleason Foundation has helped me  –  they are amazing.  But as I continue to grow weaker and am less able to do things for myself,  I am hesitant to keep asking for more from them.</p>

I will start by saying  that the thing that’s frustrating about the forum for  me is that everyone seems to be so different. I’ve known people that have had ALS that lasted 6 months and read posts from others who have had ALS ten years and still able to walk, use their arms, do halfway normal things.  it is been 2 years since I started having sy…[Read more]

My doctor suggested getting the vaccine indicating potential side effects would be less harmful to me than getting the covid.

<p style=”text-align: center;”>I was diagnosed with ALS in may 2019 with onset of symptoms about 2 years ago.  I’ve be in a power wheelchair for about a year although I could walk about 20 steps up until maybe 6 weeks ago.   I was told to conserve my energy rather than exercise.  I had always been physically active and fit and was put on  a rigi…[Read more]

By vital lung capacity of less than 60% has kept me out of any clinical trials that I wanted to get into.. im certainly interested  in participating if I could find would that would accept me

<p style=”text-align: center;”>Up until the time I went and checked on AF o’s I was able to get from my wheelchair to the toilet by myself but the Afo testing and trial took so much out of me that now I need assistance. I decided not to go with the Afo because I don’t walk enough to justify the cost or the effort to put it on and take it…[Read more]

We had to have our modified shower e m try rebuilt so that the shower chair could roll into it. they left too many Little rises that had to be removed  and replaced. now working to replace door hinges so the doors will open wider

We took out our shower that had sliding glass doors  and installed a Built-in shower with a low lip so that my shower chair can roll in to it.  We are real pleased with it so far although with the big shower chair provided  by the Gleason foundation, it is a little bit tight

Another view on exercise. I was diagnosed 14 months ago with symptoms showing up 2 years ago.  – my doctor and all of the staff that I see during clinic told me to conserve energy  rather than exercise.  I do some stretches with my legs and back which are about the only muscles I have left.   Arms and hands are very weak and so I avoid using them…[Read more]

After have a difficulties with it in the past I’ve decided to give it a second chance after reading the article where it could extend a person’s life from 6 to 19 months.  that’s a lot better than 3 months for sure.   I’ll also try it at the end of meals rather than on empty stomach

I took riluzole for a few days.  had headaches upset stomach and malaise..  decided it wasn’t worth it for me so I quit. it was tough working it into a schedule of not eating before it after