Dad diagnosed with polmonar unset

Dedi

New member
Joined
May 4, 2019
Messages
4
Reason
Loved one DX
Diagnosis
03/2019
Country
IT
State
Italy
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
  • 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.
 
Last edited by a moderator:

Dedi

New member
Joined
May 4, 2019
Messages
4
Reason
Loved one DX
Diagnosis
03/2019
Country
IT
State
Italy
Re: New Diagnosis of Bulbar ALS

The improvement you had with Mestinon is another ray of hope as ALS is generally relentlessly progressive overall. However, I know some here did have improvement with Mestinon as well.
Hi, can you elaborate please?

My dad was diagnosed with Als recently.
Just before, he was given Mestinon to see if it was Myastenia gravis. Mestinon made him stop shaking and he improved also in breathing, but the doctors stopped giving him Mestinon as they found it wasn't Myastenia.

They said it was a coincidence, as we has recovering from a pneumonia in any case. But the fast improvement shocked me anyway.

So, what do you mean that mestinon helps Als patients? Can you please give me more details?

Thanks a lot!
 

ReginaS

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Joined
Nov 20, 2018
Messages
147
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Lost a loved one
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02/2018
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US
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LL
Hi Dedi,

Sorry to welcome you here. The ALS diagnosis surely turned our lives upside down in many ways. Sound like you have done a lot of research and your father had a lot of treatments.

I would be honest about the diagnosis and have that conversation as soon as possible and not make any decisions about treatments /moving etc without your father's consent (and possibly his wife's) and I would listen to what he wants. The longer he does not know his diagnosis the more difficult it will be to tell him.
 

KarenNWendyn

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PALS
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07/2017
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Hi Dedi, I’m also sorry to have to welcome you here.

I moved your post on Mestinon to this thread to keep information on your dad’s recent diagnosis together in one thread. It helps us get to know you and your dad better.

Regarding Mestinon — it is for Myasthenia Gravis which is a neuromuscular junction disorder caused by an immune reaction to acetylcholine receptors. It results in fluctuating weakness involving variable combinations of ocular, bulbar, limb, and respiratory muscles. Mestinon works by increasing acetylcholine levels, allowing the neuromuscular junction to function properly.

ALS results in progressive, rather than fluctuating weakness. However, there can be occasional transient improvement in ALS, especially early in the disease. This is because denervation (the loss of nerve supply to the muscle) is followed by reinnervation (creation of new nerve to muscle connections). Unfortunately the reinnervation in ALS only causes transient improvement as these new connections are eventually lost, and muscle weakness progresses.

So Mestinon might cause a temporary increase in strength in some people with ALS, but I wouldn’t expect it to be as dramatic or sustained as it is in Myasthenia Gravis.
 

KarenNWendyn

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Re: your other questions:

I don’t know much about chelation, but I do know that elevated heavy metals (such as mercury) can affect the nervous system and can mimic ALS. This would be good to discuss with your dad’s neurologist.

Creutzfeldt-Jacob disease has a very different presentation from ALS. Rapidly progressive mental deterioration and myoclonus are the most prominent symptoms. It can also cause hyperreflexia, extensor plantar responses (Babinski sign), and spasticity. MRI of the brain, EEG, and lumbar puncture help confirm this diagnosis. EMG is not used for diagnosing CJ.
 

Nikki J

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I am sorry about your dad.

Hair analysis is not considered reliable. You could ask for urine testing for heavy metals. Chelation is not considered a treatment for ALS and can be extremely dangerous especially in an elderly fragile man.

It is really common to look for reasons and other answers but unless one is FALS mostly we don’t know why it happens. A second opinion is usualky what we recommend though.

I don’t understand why he is bed bound being trached and vented does not mean he has to stay in bed. People are not prevented from eating and talking either if they are otherwise able with proper management and the right trach set up for speech.

Your dad needs to be informed fully. It is his right.

If he wishes to return to Israel and is able it would be great to help him. It is his choice and that of his spouse.

I believe Brainstorm recently had some access for Israeli PALS outside of trials You could look on their website and contact them to ask if the program is still happening. If it is find out the cost and any exclusions. Age and respiratory status would be trial exclusions for sure. Even if it is possible is it something your father would want to do and is he physically able to tolerate the treatment?

I understand your shock and grief and need to help.
 

Dedi

New member
Joined
May 4, 2019
Messages
4
Reason
Loved one DX
Diagnosis
03/2019
Country
IT
State
Italy
thanks everyone for the precious answers.

As for what was asked

Hair analysis is not considered reliable. You could ask for urine testing for heavy metals. Chelation is not considered a treatment for ALS and can be extremely dangerous especially in an elderly fragile man.
yes, I heard it's not reliable, but for some reason doctors do not want to perform a urine testing. So I acted without their consent and took hair samples. Do you know if people have improve their condition after chelation therapy?



I don’t understand why he is bed bound being trached and vented does not mean he has to stay in bed. People are not prevented from eating and talking either if they are otherwise able with proper management and the right trach set up for speech.
So basically this is what happened: he was diagnosed with anxiety and depression because they couldn't find anything else. (also my dad is not the kind of person to go into depression, but that's another story)
They gave him pills but his condition kept deteriorating. At a certain point it was so bad my brother called the ambulance. As the ambulance arrived my dad went into cardiac arrest. at that point was clear that it couldn't be depression...
They kept him intubated for 2-3 weeks. In this time, they found he developed pneumonia ab ingestis (he did actually have problems eating but we couldn't understand why). After 2 weeks of intubation they performed a tracheostomy. In the meanwhile performed all sorts of tests on him to understand what happened.
after the time there he was moved to another structure where he was taken out of farmacological coma and where he stayed for another month. In all those period of time doctors didn't care to move him or call a physiotherapist, nor told us he needed one. And of course he developed lots of decubitus that are just now being treaten.
So as of now:
  • he needs a tracheostomy to breath because of Als
  • he need a Pep tube to eat because of Als
  • he can't move because of decubitus

Als is also taking his right leg now and moving without a chair is not going to happen with those conditions.

we are looking forward for him to be able to sit in a chair and get back some freedom of movement :)



I believe Brainstorm recently had some access for Israeli PALS outside of trials You could look on their website and contact them to ask if the program is still happening.
thank you! I will look for it!!
Are there other treatments you would suggest?
 
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