Jerry Fabrizio

Hi,

I am a chemical engineer and nuclear engineer.  I was an environmental engineer for many years also.

I do not agree with your data I think it is cherry picking data not looking at all of the data.  If your data could hold water ALS numbers would be going down.  Environmentally or country is going a lot better than 30-40 years ag…[Read more]

I am guessing my thoughts will not be on this.

Jerry

Eric,

I had an idea that I am testing it is called LENS

The concept of Low Energy Neurofeedback (which is a completely unique form of “brain optimization”) was first introduced by Len Ochs in the 1980s. After introducing his ideas to several national forums, he established Ochs Labs to further develop and hone Low Energy Neurofeedback con…[Read more]

I live in St. louis and go to the Washington university clinic.  They do none of those tests.  I am in a drug trial, and they do some checks….

Hi,

I am in a courage trial in St Louis.  I went to Columbus Ohio for an ALS walk that my Ohio family started.  I went to the Ohio State ALS clinic and gave them blood and skin.  They tried to get spinal fluid, but my arthritis’s was to advanced they could not get it.  I was going to give them some muscle also.  They thought that was too much…[Read more]

Hi,

6 months is not long-term planning.  If you want to live longer take the drugs that will help.  I take Riluzole and Nuedexta.  The Riluzole slows down ALS.  The Nuedexta has reduced Mucas in my mouth and that has helped me speak better.  Now I don’t sound drunk and slur my words.  Now I can sing, I try to sing Do Re Mi from Sound of Music…[Read more]

Hi,

I like warrior also.  There is a good song about I am a warrior from the 80’s from Scandal.  The lyrics don’t seem to match this fight though.  I am no hero or survivor although I do like one of their songs, Eye of the Tiger.  Those lyrics may match this fight

Kayaking is fun if your arms work.  Deep knee bends if your legs work.  Bikin…[Read more]

Eric,

Great thought, I just figured out that I have to let people help me.  I am 60 now and all I ever wanted to do was help people.  I did this to show my love for them.  Now this disease has humbled me.  Now I have to let people show their love for me.  I do not think I will ever stop being hardheaded.   I am just recovering from Covid, took m…[Read more]

Hi,

I think I got the Omicron two weeks ago.  I know I have Covid not sure which variant.  This is my second fight with Covid, so it is different than the first   This time sniffles and temperature with body tired.  Lungs were affected a little also.

Not too bad I am recovering well now.  I did get a monoclonal antibody infusion a couple of da…[Read more]

Hi,

I always thought I would die around 70.  My father died at 47 and grandfather died at 71.  My mother died of ALS when 68.

I am 60 now and I may last to 70.  If I get to 65 that will be great.  I am not afraid to die.  I just now must get used to not helping everyone and accepting everyone’s help.  I like to show my love for people by doing…[Read more]

Hi,

I always thought I would die around 70.  My father died at 47 and grandfather died at 71.  My mother died of ALS when 68.

I am 60 now and I may last to 70.  If I get to 65 that will be great.  I am not afraid to die.  I just now must get used to not helping everyone and accepting everyone’s help.  I like to show my love for people by doing…[Read more]

Bill,

Which genetic are you?  I am C9orf72.  My mother and cousin died of this disease.  Time for us to eradicate it!

Jerry

I wear clothes that will help them do their jobs.  Also Christian tee shirts

Amanda,

That is an interesting idea, Maybe we can a Zoom call for every person that wants to join in America.  Maybe too many will join, and we can have smaller groups all over the country.  I know there are two other people in Saint Louis with my genetic ALS.  I think it would be good to talk to them.

The only place I can communicate with ot…[Read more]

Hi,

I have watched my mother and cousin die of this disease I have C9orf72 genetic ALS, Bulbar.  I know what is coming.  When I first received the diagnosis, I would cry every time I talked about it.  Some of that was the ALS.  I have watched what will happen to me and it breaks my heart to be honest.  I like to help people and I do not like havi…[Read more]