Region with lots of ALS

[cocacolafun]

Some questions:

How can a region with around 50000 habitants has over 20 ALS cases at all time? And why is that region not being studied more?

In New-Brunswick, Canada, around Bathurst, there are 24 diagnose ALS persons. One of them is my Mother in Law (diagnose a year ago and can't talk/eat/walk already!). Actually, they had a meeting the other day and 7 of them was there and they were all from a region of around 6000 habitants. 7 out of 6000! Isn't that alot?

I was thinking ... maybe this kind of information can be of importance for researchers?

 

[Nikki J]

There are other clusters one being in southeastern Massachusetts. The families there believe it to be from a toxin. But if you have an area where a lot of people are distantly related then you wonder about genetics and ALS is not quite as rare as people think. A man's lifetime risk is about 1 in 600 a woman's 1in 800. But you are right environment is something that should be looked at and the researchers do look at that I think. Certainly the studies I have been involved in ask a ton of questions about where you have lived what you eat exposure to heavy metals etc etc etc.
I am sorry about your mil. This is a terrible disease

 

[jpsteeler99]

I question all the theories because there are so many people that don't have it and they live the same lifestyle as those that do have it. I think it is a genetic defect and gene therapy will be the answer some day. Unfortunately not for those that are living with it now. I do think stress is what triggers the defective gene in some cases.

 

[LBLOOM]

Guam also has one of the highest rates of ALS in the world. 400 people per 100,000, I believe. They traced it back to a toxin found in their diets that comes from fruit bats and certain nuts. The same toxin has been found in lakes around the US where ALS rates are high. This is not to say that ALL ALS comes from the toxin, but it's at least a step forward.

 

[Nighthawk]

Nikki,

I didn't know there were ALS clusters in some areas in Massachusetts.
Kind of strange, isn't it?
May be something in those areas people are getting exposed to and, some of those exposed people are more susceptible than others to develop the disease?... Just trying to give it a thought.

Thanks for sharing that info. though.


NH

 

[Nikki J]

Hi NH Middleboro MA supposedly has one of the highest ALS rates in the US. There used to be shoe and plating factories which generated lots of hazardous waste there are also high CA rates. Our ALS has nothing to do with this we are genetic but it is interesting and sad.

LBloom the Guam thing is interesting is it not? I believe the rates have dropped to near normal now with lifestyle change. At it's height though there were high levels of ALS as you said and also dementia and psp. These are the same diseases that c9orf 72 families like mine get

 

[pearshoot]

please go to web site; institude for ethnomedicine read all their articles the department of defense research center denied any connection between als and cynobacteria found in the deserts of middle east and als. in deserts cynobacteria binds sand and r cynobacteria is found in blue-green alge and it causes bmaa toxin which the institude believes can cause als. remember there is no profit in identifing the cause and eliminating it. pharm companies are only interested in treating sympthoms in all diseases

 

[LBLOOM]

Yes, it is. The levels of ALS in Guam dropped because the population of fruit bats (and the fruit in question) dropped drastically as the population grew. They have found that same toxin in many other places, though. Particularly where there are many lakes. That's not to say that everyone who comes into contact with the toxin gets ALS. There are obviously other factors at play that we just don't understand.

 

[Nighthawk]

Not everybody who is exposed to certain substance(s) is necessarily going to develop any disease that the same substance(s) might trigger in someone else.

We are all different genetically speaking. Our genetic load is different.
There might be people who, when exposed to, let's say cigarette smoke are going to develop lung cancer in just matter of a few years whereas some others who also smoke will never develop any malignant tumors during their lifetimes. The same with diabetes. There are some people more prone to develop diabetes than other people.

There are still people out there who stronglyl believe that it would be practically impossible to develop ALS from being exposed to certain substances/chemicals. They base this belief on that there are other people who have been exposed to the same substances during the same period of time and never developed ALS.
Again, our genetic load is different for everyone.
People react differently even to prescription drugs. Some people develop allergy (anaphylactic shock) when exposed to certain antibiotics whereas other people never have any kind of allergy to the same antibiotics.

ALS researchers are still scratching their heads trying to come up with a common cause for SALS (Sporadic ALS) but if they headed down to those clusters (like in MS) with abnormal number of people affected by ALS, and started a serious investigation, they could find some clues about what is causing this disease on those group of people.

I don't know for sure if they really wanna do that or keep chasing their tails.


NH

 

[cocacolafun]

Researchers are probably trying to find a medecine/drug to cure/slow down the desease. But I thought maybe, some were trying to find the cause and maybe stop/protect before the desease gets there. Those clusters would be a good place to start.

As for my cluster, up north, I think it may be because of the old paper mill or the smelter polution.

 

[Nighthawk]

Researchers are probably trying to find a medecine/drug to cure/slow down the desease. But I thought maybe, some were trying to find the cause and maybe stop/protect before the desease gets there. Those clusters would be a good place to start.

As for my cluster, up north, I think it may be because of the old paper mill or the smelter polution.

Hi,

Partially agree with you on your statements.

"Every effect has a cause".
Until you don't fully understand what causes something you can't effectively develop a solution for it.

For example:
There are 4 different types of fires and...there are different types of fire extinguishers for each type of fire.
If you use the wrong fire extinguisher to control a given type of fire, you could make things worse and endanger yourself and others.

Class A fire: The one caused by trash, wood, paper or other combustible materials as the fuel source.

Class B fire: The one caused by flammable or combustible liquids as the fuel source.

Class C fire: The one caused by electrical equipment.

Class D fire: The one caused by certain ignitable metals as a fuel source.

And, for each of the type of fires described above, there is a specific fire extinguisher.
If you use the WRONG fire extinguisher to control a fire (e.g.: using a fire extinguisher designed for Class C fires to control a Class A fire) you could endanger yourself and others and may never extinguish the fire.


Get the analogy?


Until ALS researchers don't find (or don't look for) a real cause for SALS (Sporadic ALS), how will they be able to come up with a solution (a cure)? They are trying to "extinguish a Class X fire" by using the wrong tool.
That's why all these "recent ALS therapies" are failing flat because they (researchers) say, "we found this or that, that...apparently slows or stop the ALS progression but...we still don't know what the real cause for the disease is"...
It sounds a little contradictory to me.
That's why they are still shooting in the dark, I guess.



NH

 

[jellis86]

Nighthawk....your analogy with the different classes of fire is a perfect illustration as to why they haven't found any "meaningful" treatments for ALS. I have been circulating this thought in my mind for weeks, and you "hit the nail right on the head"!



Joel

 

[pearshoot]

so if the can prove cynobacteria creates bmaa toxin which can trigger als they can concentrate on fire extinguisher a. no fire extinguisher will cure all als

 

[Nighthawk]

Dear Pearshoot,

I think my fire analogy has been somewhat misunderstood.

What I did mean was the ALS researchers are using the wrong approach to fight ALS.
They are coming up with..."therapies" to supposedly "slow down" or "stop" the disease but they don't know (or, perhaps don't wanna know) what causes the disease.
With that flat wrong approach by them, do you really and honestly think they will find a cure?
I don't think so.
Fighting the effects without knowing the cause is flat wrong.

Let me tell you another analogy to you, but this time about the Cyanobacteria you mentioned on your post.

On the NIH site, the is a huge comprehensive list of different chemical substances that are proven and/or suspected carcinogenic.
All of them work differently in the human body but...ultimately, they cause cancer. Right?
They mess up with the cellular DNA and cause a malignant mutation that translates to cancer. Right?

Your theory about the Cyanobacteria might be right, I am not saying otherwise, but, ultimately that messes up with something in the body that triggers some bad reactions and, as a consequence, the motor neurons are targeted for destruction.

Other chemicals could act the same. Perhaps, the route they use to accomplish this might be slightly different than Cyanobacteria uses but...ultimately they also lead to the same results: the death of the motor neurons, as do different chemicals that cause cancer.


Regards,


NH

 

[KissJ]

My husband has ALS and was in Vietnam. Sixty Percent of the people with ALS are service connected. Toxins...Angent Orange?
The 60% is on the ALS web site and the reason for benefits from the VA once a Vet is diagnosed. Just sayin to add to this thread and the never ending question about what causes ALS.
I HATE ALS!