Jim Conner

Very little exercise any more. Stretching int he morning is about all.

I have taken Riluzole until it upset my stomach and I am on a break from it. Haven’t noticed any difference, the disease keeps progressing. Where I lived I could not take Radicava unless I traveled a bunch and since the jury is out on its effect, I passed.

NOPE. I got the original shots a year ago, had Covid year and a half ago. I may have had it since, who knows. Call it voodoo or whatever, my wife got an auto immune disease soon after she got the shot with me. A number of people on a Mayo Clinic site stated the same. Gonna live with it as we do with other contagious diseases.

I have looked at a number of trials, however I am inMontana and the travel is a headache. I have also found out because I am 18 months past being diagnosed makes me ineligible for all the trials I have looked at.

What you paying for the lbudilast and did your doctor advise you one the drug?

Had covid, kicked its ass. Got the shots and I don’t do anything else. How can a disease that has a very small chance of hurting me, be scarier or more threatening than one that is 100% gonna kill me? I will not live my life in fear or cowering. The days I have left will NOT be spent shrinking from life.

Lions not sheep.

No joke- have to cut my beer intake to………………hardly ever. Seems the alcohol hits me faster and harder than ever. I’m a cheap date.

All I have added is a whey protein powder to my fruit smoothie in the morning. I have always eaten healthy and I just continued it.

Just like all of us are different and our ALS is different, so goes our clinics.

Mine is every 3 months, it was yesterday. I have an orthopedic recovery doctor, nutritionist, occupational therapist, physical therapist, speech pathologist, respirtory therapist, a nurse social worker ( that is also a rancher and we have great visits) and my…[Read more]

I was told by my nutritionist to add a protein powder to my smoothie in the morning to help keep my weight up, I have lost 20 lbs. in 2 years. I use Hammer Nutrition Whey Protein Powder. Tasty stuff. My grand daughter plays HS volleyball and takes it after practice and games.

I live with 4 very good cooks so I eat good balanced meals with a lot…[Read more]

Thank you.

Interesting. That Mayos in Minn. or Ari.? The only contact I get from them is for donations.

Go to Calgary Flames website and check out Chris Snow and his story. He underwent stem cell treatments in Canada. As I remember he was good for awhile but the symptoms came back. He is currently undergoing treatments in Toronto. His is a familial ALS.

Its a sad, but learning family story.

I was diagnosed with ALS in late Oct. 2019. I went to Mayos in March 2020. The first day they thought I had Kennedys. They did a couple of genetic tests, spinal tap, a blood test and sent me back home. Got a call a few days later that I had ALS cause the tests were negative. They were fooled too.

The funny thing was a few medical folks did not…[Read more]

I had it in mid Dec., last year. Got up with splitting headache, nausea and feeling like I was run over by a small car, worse than any hangover! It was a Sunday therefore the ER was the place. They gave me a bag of fluids, a shot for the nausea, a short nap and I was gone. (My old Lab was sick the day before and had bag of fluids and a shot too!)…[Read more]

Lordy when I read Ketamine for ALS my spine shivered. I used Ketamine with Rompin (sic) to tranquilize bears. We tried it on elk and moose and probably killed the critters the day after we released them due to spiking blood pressure. Keep that crap as far away from me as possible. Yuck.

Amanda my thoughts are with you. It is all too familiar that patients are waiting 18 months to 2 years or more for an accurate diagnosis. The stress from this, as any disease diagnosis, is extreme. Unfortunately the medical systems we have now in most countries are so wound up in insurance, lawsuits etc., that physicians of all stripes have a long…[Read more]

To see some Lou Gehrig Day videos got to Marquee Sports website. It is the group that telecasts Chicago Cubs games. They have a number of videos and interviews with people that have ALS or are helping people with ALS. One announcer partnered with a childhood friend that has ALS to start Project Main St. to help folks pay for needed expenses.…[Read more]

Perfect title to this thread. FINALLY. We need publicity, as I have said in prior posts. I know damm few people that knew about Lou Gehrig Day or what it is about. Being from Chicago area I checked the 2 big papers online stories, NOTHING. I have sent them emails stating my dismay. I saw photos on MLB website of a few places that had ALS…[Read more]