Jerry Fabrizio

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]

Hi,

For me I do not like questions like: what are you going to do when you need a feed tube?  Or, you know in while you will not be able to breath.  I think we all know these things are coming but for me I take each day and try to do my best to fight.    I know bad things are coming I watched my mother die of ALS.  I want to fight; not think I do…[Read more]

Hi,

I had that issue it was rough.  I started taking Nuedexta 20mg twice a day.  It stopped it and I can talk better without the saliva in my throat.  I hope it can help you.

Hi,

I take it one day at a time.  Each day I wake up I think about how I will attack this disease this day.  I do not think about next year or next week.  What can I do today.  I have bulbar C9 genetic ALS.  So, I want to talk better.  So I sing every morning.  My arms and legs are having issues so I do yoga.  I work as hard as I did when i was w…[Read more]