Chris Koch

Both myself and husband plan on getting the vaccine ASAP. The fact that I have ALS and there is no cure and treatment options are limited and not always effective makes me more afraid for my life than getting a vaccine which may cause some discomfort but will allow me again to see family.

I am so tired of this pandemic. I just started seeing my home schooled grandchildren again but always in outdoor settings and with masks.

I’ve been in the ER (due to passing out) and admitted to the hospital for 3 days. I have followed all protocols for staying safe and so far have been successful.

I put my life on hold from March 9th (day of…[Read more]

I’ve been taking cannabis infused chocolate at night and I feel it helps a lot. I sleep better and am not in so much pain. If I skip a night, it is very noticeable, I also take Tylenol at night to help with the pain. I use aa cannabis concentrate and blend with melting chocolate and pour into a candy mold allowing me to control the dosage. My…[Read more]

Amanda,

I now know what was my first visible sign of ALS ; problems with my breathing. I know the EXACT DAY it started – the day my TWIN BROTHER DIED, he was only 52 years old.

I literally could not breathe, the nurse in the family put me on oxygen for a while to catch my breath.

I went to my doctor and he did chest x-rays etc and found…[Read more]

I had respiratory onset – I suppose (read as guessing)  it started in Feb 2017; it seemed like I had a lot more sinus issues and stuffy nose etc than I have ever had. I didn’t pay too much attention to it; I was busy taking care of my brother who had cancer and we were constantly (it seemed) at the hospital for treatments/tests/complications.

On…[Read more]

I’ll be getting a flu shot shortly. I have only missed getting it twice in 30+ years. The two years that I missed getting it, I ended up in the hospital with the flu for almost a week each time – and that was when I was young and healthy!

Ann,

I was diagnosed on March 9th 2020. I had in the back of my mind suspected something like ALS back a year prior and still I wasn’t prepared.

It takes a toll on you mentally – I am a 55 year old woman who has always been active and stayed in shape. I ran rings around my grandchildren and worked a very  physical job often 10 – 12 hours a…[Read more]