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Jerry Fabrizio

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@jerryfabrizio

@dagmar-munn RTI health solutions called me has anyone ever used them before? Are they a real company that could help us? Jerry View
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    Jerry Fabrizio replied to the topic Another theory! Causes of ALS in the forum ALS News 1 week, 2 days ago

    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]

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    Jerry Fabrizio replied to the topic Another theory! Causes of ALS in the forum ALS News 1 week, 2 days ago

    I am guessing my thoughts will not be on this.

    Jerry

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio posted an update 2 weeks, 6 days ago

    @dagmar-munn
    RTI health solutions called me has anyone ever used them before? Are they a real company that could help us?
    Jerry

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 2 weeks, 4 days ago

      Hello Jerry, I checked out their website… and I am confused as to what they do. Research? Data collection? other? So, I am not sure why they would contact you… or what this group could do to help ALS patients. Do you know more?

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio posted an update 2 weeks, 6 days ago

    RTI health solutions called me has anyone ever used them before? Are they a real company that could help us?
    Jerry

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio posted an update 1 month, 1 week ago

    Hi,
    Below is an example of what i will talk about. The people who create the trials do not write them for enough robust. ALS is different than most other diseases. Everyone is different so the trial results could help some people but not others.

    The trials should be written to find out who it will help. Below we can see that this trial did…[Read more]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic Why can’t I be involved in my care? in the forum Living With ALS 1 month, 4 weeks ago

    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]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic Here I Go Again in the forum Research Topics 2 months, 2 weeks ago

    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….

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic Volunteering to participate in ALS research: what are your pros and cons? in the forum Research Topics 3 months ago

    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]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic Newly diagnosed? What do you want to know right now? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 2 weeks ago

    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]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio started the topic In Loving Memory of My Mother and Cousin in the forum In Loving Memory 3 months, 3 weeks ago

    My mother died of this disease about 27 years ago.  Next up was my cousin about 10 years ago.  We have C9orf72.

    My Mom had no drugs to help, she was done when the disease started.  She had seven kids and a lot of health issues.  Her fighting was not there.  She lasted about 3 years.  She had a bull head, I guess I know where I got mine.…[Read more]

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    Jerry Fabrizio replied to the topic Do you consider yourself a “hero” for living with ALS? How about a “survivor?” in the forum Living With ALS 3 months, 3 weeks ago

    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]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic Tired???? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 4 weeks ago

    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]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic Omicron – Oh my! in the forum Coronavirus (COVID-19) and ALS 4 months ago

    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]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic Has ALS changed your perception of aging? in the forum Living With ALS 4 months ago

    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]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic Has ALS changed your perception of aging? in the forum Living With ALS 4 months ago

    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]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic What's the latest news on AMX0035? in the forum Research Topics 4 months, 2 weeks ago

    Bill,

     

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

    Jerry

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic Dressing up for hospitals or appointments in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 4 months, 2 weeks ago

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

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 5 months, 2 weeks ago

    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]

  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio posted a new activity comment 5 months, 2 weeks ago

    Hi,

    I was watching a show and now I think I know why ALS is not cured. I know it is complicated. My mother died of genetic ALS around 1997. Twenty years later we are still getting drugs that slow down ALS. Hmm, I have worked in Pharma for over 15 years and am now on disability. I think the reason is that when they cure ALS they will not make…[Read more]

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  • Profile picture of Jerry Fabrizio

    Jerry Fabrizio replied to the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 5 months, 3 weeks ago

    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]

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