Dedi
New member
- Joined
- May 4, 2019
- Messages
- 4
- Reason
- Loved one DX
- Diagnosis
- 03/2019
- Country
- IT
- State
- Italy
- City
- Rome
hi all, I'm writing here to share the situation in my family. Of course i have some questions so thank you for reading .. and for helping out.
My dad (76 yo) was diagnosed with Als on March 2019. Pulmonary onset. It followed several months (since August) where he started feeling weak and several doctors couldn't find a cause. He has always been a very active and sport guy. Very very strong.
He was first diagnosed with Depression\anxiety in December after TONS of tests gave negative results - also neurological ones, but his health continued to deteriorate till he got a heart failure due to lack of oxygen. Thanks G-d doctors were called just moments before and no brain damage occurred. This is when he was hospitalized, diagnosed with Als and where he still is.
It seems my dad got very unlucky. No one has Als (as far as we know ) in the family, he got it quite late in age that is also unlikely, and had pulmonary onset that according to wiki is 3% of Als cases.
For those not familiar with the onset, it probably is the worst possible. It starts with the intercostal muscles that allow us to breath. So my dad is already tracheostomized , already with Pep to eat, and already can't talk nor move of course.
Hands work fine, Right leg is having problems since few weeks ago.
As a family we're looking for therapies. His doctor prescribed him Riluzole, and some energetic stuffs with vitamins.
And he is a very very good doctor. A specialist in the field, and a great human being.
Also I should add that my dad is in Italy (where he lived since marrying my mom) but he is Israeli. I myself live in Israel as my brother and my sister too. My other brother lives in Italy. We travel as often as we can to be there and help.
Of course as we went through the diagnosis we looked for therapies and other suggestions on how to make his life the best possible. And here start my questions: because internet is a place full of everything from the good to the bad, and I would like some help in understanding what to do.
so How did it start?
One thing that bothered us was that my dad started developing symptoms after he got some medications for something entirely different: Monuril for urinary infection, that caused him some side effects and then his health kept deteriorating.
We know that the root causes of Als are unknown, and there are lots of theories around the web. One of them I read often is intoxication from heavy metals. So we ran a mineralogy test from a hair sample and found that my dad has
We believe that medications (and its side effects) plus the heavy metal situations already in his body triggered Als. We also hope that a chelation therapy can improve his situation.
That said, our doctor is extremely skeptical on Heavy metal and I don't know how I should approach him. Should I? is it all a hoax? and if not, do you know if it helps doing a chelation therapy? I mean, I read ( link to unscientific site removed by moderator), and sounds legit
another thing we thought about was that just few months before symptoms came, my dad made a big dental implant operation. A cow bone was implanted, some teeths removed and then a full implant done on the cow bone.
My question then would be: Do you know if the symptoms of Creutzfeldt-Jakob Disease (CJD) can be similar to those of Als?
We didn't look for a second diagnosis as we really trust our doctor, but this idea came to my mind.
And finally, some more practical questions:
1) my dad is in the hospital, we told him he has a problem with the motor neuron, but no mention of Als nor of the fact there is no known cure. I would appreciate some help in how to talk to him. I don't know how to say that
2) what can we do to improve his life condition? to make him happier? He can't talk. He can't eat. He can't walk. He can't breathe independently. He is stuck in bed.
3) What therapies do you people suggest? Really, the only thing I came up is this chelation theraphy out of the internet. I don't know what is out there.
4) If I manage to bring my dad to Israel , do you think there is a way for getting him accepted to NurOwn trail? who should I contact?
5) anyone in a similar situation as my dad , that can give any andvice? I'd very much appreciate... thank you all!
again, i know i wrote a lot.
My dad (76 yo) was diagnosed with Als on March 2019. Pulmonary onset. It followed several months (since August) where he started feeling weak and several doctors couldn't find a cause. He has always been a very active and sport guy. Very very strong.
He was first diagnosed with Depression\anxiety in December after TONS of tests gave negative results - also neurological ones, but his health continued to deteriorate till he got a heart failure due to lack of oxygen. Thanks G-d doctors were called just moments before and no brain damage occurred. This is when he was hospitalized, diagnosed with Als and where he still is.
It seems my dad got very unlucky. No one has Als (as far as we know ) in the family, he got it quite late in age that is also unlikely, and had pulmonary onset that according to wiki is 3% of Als cases.
For those not familiar with the onset, it probably is the worst possible. It starts with the intercostal muscles that allow us to breath. So my dad is already tracheostomized , already with Pep to eat, and already can't talk nor move of course.
Hands work fine, Right leg is having problems since few weeks ago.
As a family we're looking for therapies. His doctor prescribed him Riluzole, and some energetic stuffs with vitamins.
And he is a very very good doctor. A specialist in the field, and a great human being.
Also I should add that my dad is in Italy (where he lived since marrying my mom) but he is Israeli. I myself live in Israel as my brother and my sister too. My other brother lives in Italy. We travel as often as we can to be there and help.
Of course as we went through the diagnosis we looked for therapies and other suggestions on how to make his life the best possible. And here start my questions: because internet is a place full of everything from the good to the bad, and I would like some help in understanding what to do.
so How did it start?
One thing that bothered us was that my dad started developing symptoms after he got some medications for something entirely different: Monuril for urinary infection, that caused him some side effects and then his health kept deteriorating.
We know that the root causes of Als are unknown, and there are lots of theories around the web. One of them I read often is intoxication from heavy metals. So we ran a mineralogy test from a hair sample and found that my dad has
- 5x on the maximum levels of mercury
- 1/2 the minimum levels of Selenium - supposed to balance the mercury
- 2.5 times Aluminum higher than max
We believe that medications (and its side effects) plus the heavy metal situations already in his body triggered Als. We also hope that a chelation therapy can improve his situation.
That said, our doctor is extremely skeptical on Heavy metal and I don't know how I should approach him. Should I? is it all a hoax? and if not, do you know if it helps doing a chelation therapy? I mean, I read ( link to unscientific site removed by moderator), and sounds legit
another thing we thought about was that just few months before symptoms came, my dad made a big dental implant operation. A cow bone was implanted, some teeths removed and then a full implant done on the cow bone.
My question then would be: Do you know if the symptoms of Creutzfeldt-Jakob Disease (CJD) can be similar to those of Als?
We didn't look for a second diagnosis as we really trust our doctor, but this idea came to my mind.
And finally, some more practical questions:
1) my dad is in the hospital, we told him he has a problem with the motor neuron, but no mention of Als nor of the fact there is no known cure. I would appreciate some help in how to talk to him. I don't know how to say that
2) what can we do to improve his life condition? to make him happier? He can't talk. He can't eat. He can't walk. He can't breathe independently. He is stuck in bed.
3) What therapies do you people suggest? Really, the only thing I came up is this chelation theraphy out of the internet. I don't know what is out there.
4) If I manage to bring my dad to Israel , do you think there is a way for getting him accepted to NurOwn trail? who should I contact?
5) anyone in a similar situation as my dad , that can give any andvice? I'd very much appreciate... thank you all!
again, i know i wrote a lot.
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