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Friend dying of ALS


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#1 bacopa

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Posted 31 May 2010 - 02:50 AM


My friend just got a prognosis of ALS, and he told me he has 2-5 years to live. I couldn't be a human without telling imminst about this. He's obviously a great guy, and I am just starting to know him from another forum. I told him he may want to register and bounce ideas around.

I know we raised money for Bill O'Rights, and I certainly didn't promise him we could, but the idea did cross my mind.

Anyone know of experimental drugs in the making for ALS? he said there is one that extends life by 3 to 5 months, which is obviously not long enough by any shot!

One thing imminst is good at, among others, is rising to the occasion, and helping people, humans, in any way they can live as they ought too. sorry really upset right now and rambling,

Edited by dfowler, 31 May 2010 - 02:50 AM.


#2 clay

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Posted 31 May 2010 - 03:28 AM

Have you read this essay by Hal Finney?
http://lesswrong.com.../dying_outside/

#3 bacopa

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Posted 31 May 2010 - 03:37 AM

ok but is that always an option?

stephen hawking is on a ventilator, but isn't he the exception? Why wouldnt' people with ALS choose this option.

Edited by dfowler, 31 May 2010 - 03:43 AM.


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#4 rwac

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Posted 31 May 2010 - 03:47 AM

Has your friend been bitten by a tick and/or had an erythema migrans ?

Has he been treated for lyme before ? Most treatment of Lyme is very inadequate.

Since ALS is terminal, it would definitely be worth it to get tested for Lyme and other chronic infections.
A trial run of antibiotics may be useful to see if he responds to it.

After all what has he got to lose!

FunkOdyssey will definitely have more to say on this.

Edited by rwac, 31 May 2010 - 03:48 AM.


#5 bacopa

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Posted 31 May 2010 - 03:52 AM

I told him I'm posting this on imminst, and hope that he starts an account.

Instead of throwing so much info at him, I'll wait to see if he responds to me.

rwac, what do you make of the ventilator idea? Do you think Hawking is the exception due to the 90% of ALS people rejecting artificial respiration? Or is Hawking the exception due to other things?

Is that essay factually accurate?

These questions are important.

#6 rwac

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Posted 31 May 2010 - 04:17 AM

rwac, what do you make of the ventilator idea? Do you think Hawking is the exception due to the 90% of ALS people rejecting artificial respiration? Or is Hawking the exception due to other things?


I think I disagree a bit with the essay.
I think it's not the worry of being dependent on machines, but it might be the boredom, or fear thereof.
For instance people do fine on oxygen tanks, artificial hearts, etc.

Hawking, is quite intellectual, and he is capable of intellectual stimulation, so he might be ok with living on a ventilator.

If I were to be in such a situation, I think I could live on a ventilator.

Is your friend intellectual ? Does he have the intellectual capability as a backup ?

#7 bacopa

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Posted 31 May 2010 - 04:26 AM

rwac, what do you make of the ventilator idea? Do you think Hawking is the exception due to the 90% of ALS people rejecting artificial respiration? Or is Hawking the exception due to other things?


I think I disagree a bit with the essay.
I think it's not the worry of being dependent on machines, but it might be the boredom, or fear thereof.
For instance people do fine on oxygen tanks, artificial hearts, etc.

Hawking, is quite intellectual, and he is capable of intellectual stimulation, so he might be ok with living on a ventilator.

If I were to be in such a situation, I think I could live on a ventilator.

Is your friend intellectual ? Does he have the intellectual capability as a backup ?


I don't think he's that intellectual, but he's a smart guy, and actually my memory is foggy from the lithium so I can't think back to former posts, other than he suffers from a psych diagnosis and probably has significant depression, a mitigating factor in this.

He told me he'd look into the respirator, but was not into cryonics. He said he'd rather "let nature take its course." But I don't know him well enough to judge correctly if this is the real him talking, or the strucken with few years to live self.

I think he's probably been through hell from his psych dx but said he felt very scared of death, and that he would have to come to terms etc. He's probably not like most of us who would do anything to live x amount of years, but I KNOW he is not ready to die, and if he says he is, that's from hearing such horrible news. I probably would give up for a while myself. I'll see if he replies to my post that I would bring his name up. Than after a few days pm him again and see if I can connect deeper with him.

I can't quote things he said in his thread where he told us all, but will wait to see if he joins us here.

Edited by dfowler, 31 May 2010 - 04:34 AM.


#8 bacopa

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Posted 31 May 2010 - 04:30 AM

rwac, what do you make of the ventilator idea? Do you think Hawking is the exception due to the 90% of ALS people rejecting artificial respiration? Or is Hawking the exception due to other things?


I think I disagree a bit with the essay.
I think it's not the worry of being dependent on machines, but it might be the boredom, or fear thereof.
For instance people do fine on oxygen tanks, artificial hearts, etc.

Hawking, is quite intellectual, and he is capable of intellectual stimulation, so he might be ok with living on a ventilator.

If I were to be in such a situation, I think I could live on a ventilator.

Is your friend intellectual ? Does he have the intellectual capability as a backup ?

But do you know of many ALS sufferers living full lives on ventilation? I don't know the course of the disease on ventilation, and maybe you know more.

#9 rwac

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Posted 31 May 2010 - 04:34 AM

But do you know of many ALS sufferers living full lives on ventilation? I don't know the course of the disease on ventilation, and maybe you know more.


I'm sorry if you mistook me. I don't know any ALS sufferers, ventilatoion or otherwise.

#10 bacopa

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Posted 31 May 2010 - 04:51 AM

just hoping to learn more about what he can possibly hope for. I'll google ALS and ventilators

#11 bacopa

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Posted 31 May 2010 - 04:55 AM

http://www.rockinfor...org/ALS_FAQ.htm

Persons with ALS who go on a ventilator may live for many years, but once on a ventilator, 24-hour care MUST maintained by qualified nursing care.



#12 bacopa

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Posted 31 May 2010 - 04:57 AM

It seems this is a decision he will have to make the hard way. Stephen Hawking probably has some money, or lots from his books. But I don't know about insurance and how they'd look at this. My friend was interested and will do some research. I sent him that link with that quote.

Quote from ALS forums

Hi Ashley,

I think Jean said it pretty well. Although a vent takes care of the most fatal part of ALS; breathing. There are other things that a quadriplegic is susceptible to. Due to lack of exercise, heart disease can be a problem. Also, systemic infection from which Christopher Reeves died. ALS patients do have an advantage over typical spinal chord injury patients. Because we can feel our bodies, we feel pain if there is a skin breakdown or a positional problem. This allows us to address the situation before it gets out of hand.

Having said all this, I know my vent will give me many extra years, if not decades. That is far better than the alternative.

Mike


It looks like a tough decision, and also, Hawking is said not to be always on ventilation, I'm not sure how but Hawking, according to forum, has some special care that allows his body to be stronger from not always being on ventilation. I'm thinking less susceptible to infections stronger, not muscle stronger, I would think.

As for insurance

I don't know much about insurance and vents. I am on Medicare and Medicaid. They pay for every penny, including 24/7 in-home care. Sorry, but I don't know about any other insurance.

...as quoted from the same guy.

Edited by dfowler, 31 May 2010 - 05:13 AM.


#13 bacopa

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Posted 31 May 2010 - 05:20 AM

rwac, what do you make of the ventilator idea? Do you think Hawking is the exception due to the 90% of ALS people rejecting artificial respiration? Or is Hawking the exception due to other things?


I think I disagree a bit with the essay.
I think it's not the worry of being dependent on machines, but it might be the boredom, or fear thereof.
For instance people do fine on oxygen tanks, artificial hearts, etc.

Hawking, is quite intellectual, and he is capable of intellectual stimulation, so he might be ok with living on a ventilator.

If I were to be in such a situation, I think I could live on a ventilator.

Is your friend intellectual ? Does he have the intellectual capability as a backup ?

It just occurred to me, that he's probably in his 40's or even 30's, so he could greatly benefit from buying time until there is better care for ALS. Hawking is 67 and still alive, so I would imagine it would be tragic for him not to take the ventilation and if he's not on disability, that site said ssi or ssdi would definitely pay for this 24 hour care.

Furthermore, Christopher Reeve fought for his live but sadly died due to infection. That in itself fueled so much research into keeping quadriplegics alive, which he would be. So I'm hoping there would be more research and understanding into how to prevent cardiac problems or infections, which seem to be the things that would kill people with this condition.

Edited by dfowler, 31 May 2010 - 05:35 AM.


#14 Sillewater

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Posted 31 May 2010 - 07:29 PM

Lithium delays progression of amyotrophic lateral sclerosis

Autophagy. 2008 May 16;4(4):527-30. Epub 2008 Mar 17.
Autophagy and amyotrophic lateral sclerosis: The multiple roles of lithium.
Fornai F, Longone P, Ferrucci M, Lenzi P, Isidoro C, Ruggieri S, Paparelli A.
Department of Human Morphology and Applied Biology, Faculty of Medicine, University of Pisa, Italy. f.fornai@med.unipi.it

#15 tunt01

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Posted 31 May 2010 - 08:10 PM

i thought ALS was related to some kind of dysfunction in one of the forms of SOD (can't remember if it's MnSOD or not). i am pretty sure they pinpointed the mechanism by which ALS is caused in people. i remember reading an article about it, possibly on sciencedaily.com. autophagy does help. you might want to look into something like rapamycin.

#16 bacopa

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Posted 03 June 2010 - 08:17 PM

looks like a misdiagnosis. Wow, it was his antipsychotic causing tremors. Some docs are so incompetent.

#17 Gerald W. Gaston

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Posted 03 June 2010 - 09:14 PM

That is great news! I was just about to post my experience with a friend of the family who had ALS. He was in his early 40s when it struck and he lived 7 years. But the majority of those were simply because of the continuous care of his wife. She is the most loyal, selfless person I have ever met. She married him after his diagnosis and stayed by his side at all times. Did most every thing possible for him. He was a great speaker (paid to teach professionals) and of course his speak was the first to go. I regret not visiting him more... he lived too far away and I honestly hated to see what the disease had reduced him to. They tried all types of treatments. As he lived a few years longer than the max they gave him... maybe some helped.

#18 bacopa

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Posted 03 June 2010 - 09:24 PM

I don't want to say he could have and depress anyone. But was the ventilator an option?

thank you so much for responding. I just went through a physical health scare that seems not to be anything to be concerned about.

Obviously don't blame yourself as you were busy and lived too far away. But thanks again! I'm very happy for this guy.

#19 niner

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Posted 04 June 2010 - 12:04 AM

looks like a misdiagnosis. Wow, it was his antipsychotic causing tremors. Some docs are so incompetent.

Wow. That goes way beyond incompetent. More like malpractice. What if he had killed himself before they figured it out?

#20 bacopa

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Posted 04 June 2010 - 03:20 PM

it's amazing but this guy is so nice or lacking in strength in some ways that he said it didn't even bother him! I would sue the fucker

#21 Sillewater

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Posted 04 June 2010 - 08:25 PM

I'm glad he didn't have ALS. phew.

#22 Rational Madman

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Posted 04 June 2010 - 11:45 PM

The standard treatment for Lou Gerhig's Disease is Riluzole, which your friend was undoubtedly prescribed. This treatment has been demonstrated to be the most effective for slowing the progression of the disease. Since there is not a consensus on the etiology of ALS, and because of the poor prognosis, it would be wise to treat every possible cause seriously. This approach might be aptly described as a carpet bombing approach, and would require an exceedingly open minded doctor---or the needed will and finances to procure these drugs independently.

If mutated gene is causing oxidative stress:
The following should control inflammation, and neuroinflammation in particular
-Minocycline
-Actos
-Avandia
-Methylcobalamin
-Steroids
-NSAIDs
-Mitochondrial supplements--benfotiamine, carnosine, acetyl canitine, and alpha lipoic acid.

If the pathogenesis is believed to be provoked by a viral infection, and assuming that virus is a part of the herpes family, then I would suggest high doses of an antiviral like Valtrex. Further, there is some evidence that an anti-retroviral cocktail---comparable to that used against the AIDS virus---may improve the prognosis of ALS patients. Anti-viral supplements, while of relatively little use, would not hurt, and may include: AHCC and medicinal mushrooms.

If neurotoxins are believed to be the culprit, then intravenous glutathione therapy, and the administration of the toxin binding drug Questran would seem to be the most logical choices. This could be accompanied by regular intravenous doses of a broad spectrum antibiotic of the tetracycline or the fluoroquinolone class. Perhaps the intravenous administration of antiparasitic drug may be of some use.

Heavy metals may also play a role, and if an elevation is confirmed by testing, the intravenous use of chelating agents like EDTA, DMSA, or DMPS would be advised.

If an alteration in the body's immune response is believed to be the cause, then a powerful immunosuppressive like Rapamycin would be indicated.

Finally, for the cognitive symptoms, I would suggest a psychostimulant, MAO inhibitor, or a acetylcholinesterase inhibitor.

Again, if it were me, I would treat every possible cause as a certainty, and do everything within my power to secure the requisite agents for treatment.

Edited by Rol82, 04 June 2010 - 11:49 PM.

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#23 bobdrake12

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Posted 05 June 2010 - 02:57 PM

-Mitochondrial supplements--benfotiamine, carnosine, acetyl canitine, and alpha lipoic acid.


Thanks for your very comprehensive post.

I presume you meant Acetyl-l-carnitine.

There are two forms:

o Acetyl-l-carnitine hydrochloride
o Acetyl-l-carnitine arginate dihydrochloride

Would you recommend both?



I understand that some doctors combine benfotiamine with pyridoxine hydrochloride and use it to treat patients with nerve damage and nerve pain such as sciatica.

While I do not have this disease and am in good health, I am always interested in cutting edge cures.

I found a Site called "ALS - Prevention & Curing Protocol" and have included some excerpts from it:

http://curezone.com/dis/1.asp?C0=34

The protocol incorporates lifestyle change, and implements healthy diet, body cleansing, exercises and different traditional and natural therapies. Protocol contains links to other pages that give detail explanation for each part of this program. Please, follow the links, to fully understand all the words. Remember: There is always something that can be done! The first thing to do is to change your mood. If you are depressed, if you are unhappy, you can not be healthy. Advice: start with the Laughing cure!

Laughing provides us with the natural inner massage, and through change of mood it can account for up to 30% of cure!



#24 bacopa

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Posted 05 June 2010 - 05:20 PM

The standard treatment for Lou Gerhig's Disease is Riluzole, which your friend was undoubtedly prescribed. This treatment has been demonstrated to be the most effective for slowing the progression of the disease. Since there is not a consensus on the etiology of ALS, and because of the poor prognosis, it would be wise to treat every possible cause seriously. This approach might be aptly described as a carpet bombing approach, and would require an exceedingly open minded doctor---or the needed will and finances to procure these drugs independently.

If mutated gene is causing oxidative stress:
The following should control inflammation, and neuroinflammation in particular
-Minocycline
-Actos
-Avandia
-Methylcobalamin
-Steroids
-NSAIDs
-Mitochondrial supplements--benfotiamine, carnosine, acetyl canitine, and alpha lipoic acid.

If the pathogenesis is believed to be provoked by a viral infection, and assuming that virus is a part of the herpes family, then I would suggest high doses of an antiviral like Valtrex. Further, there is some evidence that an anti-retroviral cocktail---comparable to that used against the AIDS virus---may improve the prognosis of ALS patients. Anti-viral supplements, while of relatively little use, would not hurt, and may include: AHCC and medicinal mushrooms.

If neurotoxins are believed to be the culprit, then intravenous glutathione therapy, and the administration of the toxin binding drug Questran would seem to be the most logical choices. This could be accompanied by regular intravenous doses of a broad spectrum antibiotic of the tetracycline or the fluoroquinolone class. Perhaps the intravenous administration of antiparasitic drug may be of some use.

Heavy metals may also play a role, and if an elevation is confirmed by testing, the intravenous use of chelating agents like EDTA, DMSA, or DMPS would be advised.

If an alteration in the body's immune response is believed to be the cause, then a powerful immunosuppressive like Rapamycin would be indicated.

Finally, for the cognitive symptoms, I would suggest a psychostimulant, MAO inhibitor, or a acetylcholinesterase inhibitor.

Again, if it were me, I would treat every possible cause as a certainty, and do everything within my power to secure the requisite agents for treatment.

you did read that he doesn't have ALS...but great info

#25 steenblock

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Posted 05 December 2015 - 06:27 PM

There is a lot more now known about ALS and what to do about it. I have put up on my website a scientific slide show that goes over the causes as I see them and what can be done about this disease now. Thanks. Dr David Steenblock

www.stemcellmd.org


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