Jerry Fabrizio
Forum Replies Created
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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 ago.
I like the way you think, keep digging. Look into LENS Ochs lab, it may be the start of the end of ALS. Not for me but for the people coming in 30-40 years.
Ochs Labs – Helping More People, Faster
Thank you for your thoughts, Jim!!!!
Jerry
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I am guessing my thoughts will not be on this.
Jerry
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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 concepts and the technology behind it.
My Dr (not Neurologist) uses for his patients to help their brains.
He measures my head and places the part that sends the signal to my nerve.
Example My doctor placed the sensor on my head and another on my leg/arm. He measured to amount of energy that was coming through. Then he increases the signal until it gets to the sensor. Then he sends the signal for a couple of minutes. I do not feel anything while this is happening.
When I get home, I place a TENS unit sensor on the same place in my arm and my leg. Then my hand or foot quivers.
So what, you ask.
Before I started, I could not start my car with one hand. Now I can.
Before I started, I had a drop foot. Now I do not.
My Neurologist thinks it could work. I have just started this, and I am communicating with my Neurologist. I hope it works and I hope I can help people understand how it works.
I wish I had this idea earlier.
Keep Fighting we have help our doctors think about new ways to stop this. They have been looking at the same thing for many years. We have fresh eyes!
Jerry
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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….
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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 for one visit. I want to crush this disease and the best way is to help research. These clinics are really important to beat this disease. They need our help!
There is probably a clinic close to you.
Hopefully this link will help you find a clinic close to you.
Search of: ALS – List Results – ClinicalTrials.gov
Let’s get to work to kick this diseases butt!
Jerry
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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 every day. I try to do Tai Chi also every day, Ba Dison Jin Qi Gong
I want to start Radicava as soon as I can.
I am also in a Courage trial for Reldesemtiv. There are people in this group that have lived more than 10 years and are still doing well. Fight hard.
All these things have really helped me, I can do them in private on Youtube.
I have not heard from a jerk like that. When I talk, I usually watch the person to see if they understand what I am saying. I usually tell them I have ALS before they ask questions.
Being a private person does not mean you cannot tell them you have ALS. I have been asked if I was drunk a couple of times. At work, my boss’s boss (bad boss) came over to see if I was drunk so he could fire me. I told him I was just having trouble speaking and he did not smell alcohol, so he just walked away, did not ask if Iwas OK. He did look sad though…
If people do not know what is wrong with us it can confuse them. Make it easier and tell them you have ALS. The jerks will still be jerks but you will know they have a lot of issues themselves. No normal human would treat you like that. I am sure they have trouble sleeping.
I hope this helps you,
Jerry
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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. Biking is also fun but a little dangerous with the loss of balance.
Keep on fighting everyone!
Jerry
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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 my first 15-minute bike ride. Off course I climbed the biggest hill around to see if I could do it. Bull head intact.
I do feel tired all of the time, but I do not let that stop me. I let Covid slow me for 2 weeks but no more. I do not want to give up anything, I know I will have too but I will fight against it. I fall down a lot more now as i lose my balance. I have more band aids on my knees than I ever had.
My lungs are doing OK. I am in the courage trial now. Not sure I have the drug or not. I want to start taking AMX0035 today. But the world will make me wait.
Let people help you but never give up that bull head!
We are two bullheaded brothers.
Any more brothers or sisters out there who are bull headed?
Let’s kick this diseases butt!
Jerry
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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 days ago and I am sure that helped.
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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 things for them. Now I must let them show their love for me by doing things for me. These next years will be a blessing if I make it through them and a bigger blessing if I do not.
To summarize, ALS has not changed my perception of aging. I will die someday. But it has changed everything for me.
Jerry
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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 things for them. Now I must let them show their love for me by doing things for me. These next years will be a blessing if I make it through them and a bigger blessing if I do not.
To summarize, ALS has not changed my perception of aging. I will die someday. But it has changed everything for me.
Jerry
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Bill,
Which genetic are you? I am C9orf72. My mother and cousin died of this disease. Time for us to eradicate it!
Jerry
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I wear clothes that will help them do their jobs. Also Christian tee shirts
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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 other people that have ALS is here. Talking to other people may help us.
Just a thought.
Jerry
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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 having people have to help me. I have lived 60 yrs. like this. Nuedexta has helped me not cry as much…
I am not afraid to die, I think that is important, I will fight until the last day. I was going to say breath, but I am not sure if I will be breathing by myself when I die.
I deal with the mortality talk with my friends and family by explaining how I deal with waking up each day. I praise God and then start the fight for the day. I take my pills and sing to help my speech, then exercise and search for new drug trials. Then all of the sudden the day is over. Ready for the next day if I wake up. Repeat…
Now I get to look at these Forums and try to help also.
Everyone will die someday; I will die someday. It may be ALS or maybe another heart attack or something else that comes up. I am not promised tomorrow….
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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 don’t have a chance to fight. I will die one day we all will die someday, but not today, hopefully… Help me fight don’t tell me I can’t.
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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.
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Hi,
Yes, it does help with the mucas. It helped me speak for a while. Now I cannot speak.
Jerry
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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 working. I have had this disease for a year now. Lets kick its butt!