associations with herbicides and ALS

[jamorel]

As some of you may know, my friend Joy was diagnosed in August and I have dedicated my time to learning more about ALS and trying to create more awareness about it.

I have read a good deal about possible causes and I am wondering your thoughts. What I continue to come across is an association with agriculture chemicals and also a higher occurance among war veterans. There is also a study that implies a higher incidence among tobbacco users... but I have only found that once and it could tie into the agriculture chemical exposure.

I have more info and links on my blog, Hope for Joy
but I am having a difficult time finding anyone who will provide any answers or even a definative "maybe". I would like to know your thoughts as you are directly affected by... or you wouldn't be here.

Thank you

Jodi
www.hopeforjoy.ca

 

[indigosd]

Jodi, your blog for Joy is wonderful! How lucky for her to have YOU as her friend and cousin. Thank you for being a powerful advocate. Hugs, Kay Marie

 

[jamorel]

Thank you, and you too, Kay Marie. You are so wonderful and supportive on here, and I see you on FB as well... it is great that you are actively working to make a difference. I don't know if we will help find the cause or the cure, but every person we touch brings us one step closer... Big Hugs! :razz:

 

[Ratman55]

Hi Jodi,
Congratulations on the website and blog. I had seen them earlier and will surely get back to check them out more thoroughly. In answer to your quest, I grew up around a lot of farmland and as my wife points out, until I was 17 or 18 our family drank from a shallow well. Now by shallow I mean 30 to 50 feet, but what is noteworthy is that much of the farmland drained toward our property and the runoff often flooded our home's lower-level. I never thought much about it until my wife said something several weeks ago. I am one of eight siblings, and my older sister developed MS about 20 years ago. No one else has any signs or symptoms. I worked on a farm for about 10 years, on and off when I was between 20 to about 33 years old. During that time I was not exposed directly to any chemicals. I was also a salesman until about 15 years ago, and I visited nearly every manufacturing plant in our community. Quite a few of them used or manufactured chemicals. Lastly, I was overcome by propane fumes about 10 years ago. It gave me a day in the hospital and a hell of a headache and about 2 to 3 weeks off work, I also had some short-term memory loss. Sorry for the laundry list here, we all seem to have our theories. I think so many of these possible causes lead to one common factor: whatever" kicks this thing off" may not directly cause ALS, but shocks our system severely. Then, some mysterious domino effect plays havoc with our motor neurons. May God bless your efforts.--JK

 

[Phil M]

You can drive yourself crazy trying to figure out what causes ALS! Here are a couple of thoughts. The Military has a 50% higher chance of getting it. They had a hight rate of ALS in southern Guam. They discovered that southern Guam has a higher than usual aluminum present in the soil, or something like that. I'm not saying that I think its aluminum, but its possible. We eat, and drink out of aluminum on a daily basis. Aluminum is a toxic metal. I was a machinist, and had a lot of contact with aluminum, and various other types of metals. And the military is in contact with a lot of metals. But what really throws a wrench in it is the familial version of ALS. We may never know what causes it. Some people are convinced that stress is the cause. I don't buy into that at all! My life was low stress. I think if it is caused by a material thing, that the "thing" is something simple, and is right under our nose.

 

[jamorel]

I agree, Phil. It can drive you crazy, especially if you are trying to achieve one cause. I am leaning more and more toward the possiblity of multiple causes. I was thinking more about it today and it occurred to me that I might be coming at it from the wrong angle. Instead of focusing on a single cause, perhaps I should be considering both the cause and effect.

If I do a horse analogy, which will probably throw most of you off but it is what I am familiar with, I think of it like this:

I am riding along a country road, enjoying the sun and the birds when at once there is a loud noise in the ditch beside me. I don't have time tosee what it is as my young horse bolts. All at once I am racing down the road in a complete runaway and it takes every bit of skill and wit to save both the horse and I from certain peril. What caused it? Well it could have been a couple of ducks in a hidden pool, or a dog, or a deer. It could have been a number of things... but it doesn't matter now... I am in a runaway and fighting for my life.

Now on a different day I am on a different horse and again there is a loud noise from the shoulder of the road. However, this time I am riding a quiet horse which is not easily startled. I look to see that it is a cat in that has caught something in the tall grass, but my horse continues on without faltering. No reaction... no runaway, no life threatening peril.

That would be some people's bodies. Some people's bodies are more easily triggered by environmental stimulants than others. The fact does remain that a stimulant needs to exist and perhaps it is not one but many.

The question is, why does one person's body react while another's does not? I want to know both: I want to know what the triggers are and I want to know why some people develop ALS while others continue one leading healthy lives. Sorry if I lost everyone on the horse analogy, it is just what I am working with.

 

[jamorel]

Jeff...Joy had been diagnosed with melanoma about three years ago and started running marathons shortly after they removed the cancer. She was running a lot before she was diagnosed... but I am not sure what set it off. Considering her situation, there was definitely enough going on to shock her system. She doesnt have a family history of ALS (that we know of) but her mom had parkinsons and her father suffered from alzeimers. Her father also served in the army and she spent her early years living on army bases. After her dad retired from the army, she grew up in a very small town in the heart of cattle country. I believe the city water came from a water tower and not a well. All of this should be in a data base... there has to be commonalities with others who have ALS. In answer to Phil... I agree, I think it is probably "right under our noses"

 

[indigosd]

Jodi, I LOVE your horse analogy! Perfect :] I don't care what caused it but I WANT A CURE! I WANT PEOPLE TO CARE enough to be outraged that so many incredible souls have a death sentence.

 

[sadiemae]

Kay Marie, we are all given a death sentence when we are born. So much of our PALS depression comes from thinking this. Our neurologist , who I really like, has this attitude when it comes to narcotics for pain. He says,"for most people we wouldnt prescribe taking this for an extended time, but for you it doesnt matter," I agree that we have every right to be outraged, but I refuse to dwell on the "death sentence" part of it. HUGS Lori

 

[jamorel]

You are right, we all have a death sentence. I don't have ALS and I have lost people I love to accidents, cancer and heart disease... but the situation with ALS makes me mad. The lack of attention, knowledge and understanding... and the lack of support for those who have it, well, it makes me mad. I makes me mad when I tell people and they look at me with a blank stare because they have no idea what ALS means. That has to change, and you are right... we shouldn't dwell on the death sentence part of it, but we should demand that more is said and done so that people who are diagnosed don't feel like they have been punched in the gutt and then shoved in a closet. I think.

 

[sadiemae]

Every time I mention ALS to someone I follow it with the question," Do you know what that is?" I then ask them if they have a couple of minutes to let me explain it, and they usually say yes. The conversations usually go on longer than 2 minutes, and I walk away feeling better for educating one more person. My husband is a Veteran, and I have strong opinions on the VA connection, which I also tell them about. As I was at Wal Mart today, a lady commented on the 5 packs of bacon I put in my cart, and I told her my husband has ALS, and he loves bacon for breakfast. This led to a 15 minute conversation, and another person who now knows about ALS. HUGS Lori

 

[joelc]

ALS does not have to be an automatic death sentence unless you refuse a PEG and/or a trache and vent. There is way to much doom and gloom surrounding this disease and it is not necessary. I know, once again, that I will be attacked for my perspective. So be it, but for all you new people there is life after ALS, it is up to you.

 

[jamorel]

I didn't mean to dismiss your thoughts, Joel, I just hope you are right about that for Joy. I know some people live with ALS and that is what we are hoping for. Joy is trying everything that is available, from Eric's clay baths to chelation therapy and a trip to Sanoviv but it is progressing quite quickly. We hope that she is one of the PALS for a very long time at this point as that gives us time and maybe there will be treatments with time.

 

[jamorel]

Every time I mention ALS to someone I follow it with the question," Do you know what that is?" I then ask them if they have a couple of minutes to let me explain it, and they usually say yes. The conversations usually go on longer than 2 minutes, and I walk away feeling better for educating one more person. My husband is a Veteran, and I have strong opinions on the VA connection, which I also tell them about. As I was at Wal Mart today, a lady commented on the 5 packs of bacon I put in my cart, and I told her my husband has ALS, and he loves bacon for breakfast. This led to a 15 minute conversation, and another person who now knows about ALS. HUGS Lori

That's awesome, Lori! I was at an event on Monday night which was raising funds for the ALS Society of AB on behalf of Hope for Joy and I had to speak at the end of the evening. It was interesting and sad when I explained to the small crowd what ALS was and why they were there. Some knew, most didn't. Some were there for ALS and I loved to meet them. Most were there for the fun part of the night and I don't blame them. It was good to inform them, but it was also difficult to see the faces of people looking back at me looking... I don't know what the word is... shocked and disturbed I guess. They didnt know that such a disease existed. Anyway, keep talking! Keep teaching!

 

[joelc]

I did not take it that way, I was supporting your statement that we should not dwell on ALS being a death sentence. Then I took it one step further and stated it does not have to be an automatic death sentence.

I also do not mean that progression stops. I am a total quadriplegic at this point, and have a PEG and a trache and vent. There is absolutely nothing I can do for myself and can't be understood either if I try to talk.

But, my mind is unaffected so I can still enjoy life and our children and grandchildren. It is up the individual whether they are going to concerntrate on the negative or get on with their lives and focus on the possitive.

I feel myself progressing every day but choose to thankful for what I can still do and concentrate on that.
I also try to bring awareness to ALS and try to educate those that don't know what it is. I have spent many hours with doctors and neurologists dispelling missinformation they have blieved for years. I wish there was something more I could do!
Next week I meet with law enforcement in Vancouver to discuss ALS and what they need to know about it. I am trying, but it is getting harder.

Have you seen my website? Living and Surving with ALS