Attention all recently diagnosed PALS

[ekoozmin]

Reading your stories is fascinating, this would be such a great project for a budding forensic medicine student. My father broke his neck in the summer of 2003. We will never know if he tripped because ALS was starting to weaken his legs, or if the trauma brought on the ALS. He apparently also had undiagnosed stenosis (compression of the spinal cord, making it less flexible). After his neck healed, he underwent a laminectomy (reaming out part of the spinal cord) to reduce the risk of more damage. He fell twice after that, and was diagnosed with ALS (and Lyme disease) in 2005.

As to exposure to chemicals--Dad worked at a sawmill and as a junk hauler in his youth, and was a gas mask repairman during the Korean war, but he's not sure he was actually exposed to anything as he never saw combat. I remember one particular government office building he worked in had carpet squares that came unglued, exposing him to fumes all day long for weeks until they were fixed. No one thought that was so bad back then.

In his later years, he became physically very active--swimming daily, long-distance bike riding, downhill skiing, and ballroom dancing.

Take care everyone!

Liz

 

[rcharlton]

Thanks for the replies everyone.

I was really hoping that some common element would really jump out at me from some of the histories of younger PALS.

I think when someone is diagnosed with ALS in their Autumn years ie. 70 years plus - they have probably been exposed to so many different environmental toxins that it probably is a combination of factors contributing to the break down of motor neurons - and there probably is no specific cause.

However, with younger PALS, it may be that they have been exposed to a higher concentration of some toxin early on.

Jeannie - I think that you are one of the youngest PALS on this site - any thoughts on why you were sucker punched with ALS at such a young age?

I really am surprised that there does not appear to be more epdimeological work being done on ALS.

Upon diagnosis, I think every PALs should be given a super comprehensive questionnaire examining every minutiae of their lives: where do you live, where did you grow up, was it served by well water, municipal water, describe your diet, how many apples a week did you eat, how many diet cokes, coffees, jugs of milk did you have week, did you have carpeting or tile floors, what laundry detergent did you use, did you have any pets, birds, dogs, hamsters, where you physically active, running, swimming, cycling, soccer, did you have your tonsils removed, did you use a lot of topical acne medication, did you use a lot of anti-perspirants, bug repellants, sun screens,...etc...

The more I think about this, the more I am stunned that I have not been asked to participate in any type of epidemeological study. Nothing - no questionnaires - which amazes me for a fairly rare disease. I think there have been some epidemeological in specific cases, like on Guam - but I am not aware of any larger global studies - which I think is essential.

My fiancée worked at an eating disorder program, and the first thing they asked patients coming through the program is whether they were agreeable to participating in studies.

My fiancée is in 1st year Med School at U of Toronto right now, and for her 2nd year research project she and her friend plan on setting up some type of data base and research questionnaires.

 

[ruby ben]

Atten. all recently diagnosed PALS

Hi all, I have to say to rcharlton is that I only have 5 out of his 7. I think the head trauma is the biggest clue. My first neuro was very interested in the dead spot in my brain and where it might have come from. He finally decided it was from a bad birthing. But I have been knocked unconcusion twice in my life as a child (learning how to ice skate, running and didn't see the rope for new fence - caught it across my neck). Plus being in a bad car wreck. So I go with head injury...............ruby from vancouver

 

[Jerry Story]

My symptoms seemed to start after I quit smoking.I drank diet coke on a daily basis and chewed sugar-free gum alot when I quite smoking.Aspartame?1ST it was vertigo,then leg cramps,stiff neck[bad enough to take time off work] and loss of strength in my right arm.A couple of years earlier though, I fell off my bicycle and broke my jaw.Head injuries?Hmmmmmmm

Soft drinks contain aspartame. Alex Jones said that to call aspartame a poison is to do it a favor. Aspartame is especially bad for people with ALS. Stay off the g__d___ stuff!
If you see "sugar-free" a red alert should go off in your head. Read the list of ingredients. Chances are you will find aspartame as a substitute for sugar.

 

[ruby ben]

Atten. all recently diagnosis PALS

Sorry guys,

I meant to say I only had 2 of rcharlton's 7. That being big city and head bang

ruby from vancouver

 

[Jerry Story]

The topic of head trauma came up a while back. It was very interesting to find how many people had hit their heads a good one before they ever showed any ALS symptoms. My dad is one of those. He fell off a ladder and was unconscious for a short amount of time. We don't really know how long he blacked out because he was by himself, but he thought it wasn't very long at all (a few seconds maybe). Anyways, the whole "accident" happened probably 6-12 months before he noticed his speech going. INTERESTING!
Dana

I have some audio files of a lecture about Parkinson's. A blow to the head of sufficient force that it causes uncomsciousness increases the chance of getting Parkinson's by a factor of six. People who received such a blow to the head are 6 times as likely to develop Parkinson's as people who did not receive such a blow to the head. Not theory. Statistical fact.

A blow to the head can damage the blood brain barrier. This is a network of blood vessels that protects the brain against chemicals that would tend to harm it. Some chemicals just don't get to the brain, they are stopped by the blood brain barrier. But if the BBB is damaged, then stuff can get thru that can cause brain diseases. Not just Parkinson's. All brain diseases. Including ALS.

 

[Jerry Story]

I did not have head trauma.

My environmental factors: I live in a big city, Los Angeles (smog?) I own a dog. My eating habits were very bad for many years- fast food, frozen dinners, diet cokes, lots of sweets (aspartame? msg?). I also had a severe depressive episode about a year or so before my symptoms started, and wonder if this was related to upper motor neuron damage at an early stage.

Yup. MSG. Aspartame. Perhaps a few other dietary imperfections.
Depression can be a warning, so I read somewhere.

 

[Jerry Story]

Well if you want to explore that avenue. I had toxic exposure for 33 years as a firefighter. Diesel fumes: Yup. Did Fire and Flood restorationes for 17 years. Don't drink pop or sodas as they are called in the US and never diet drinks. Banged my head on pool bottom at about 25. No LOC but in 1977 fell on the ice and had 5-10 min. Loss Of Consciousness and concussion. Quit smoking long long time ago. Wasn't that stressful. Or so I didn't think at the time. Who the heck knows but you have opened a good avenue of thought Richard.

A blow to the head increases the chance of developing Parkinson's by a factor of six. I would be surprised if it does not do the same for ALS. Damage to the blood brain barrier. The BBB protects the brain.

 

[ladave]

Jerry- Well I have completely eliminated aspartame and severely limited my msg intake so we will see if that has an impact on my progresson.

RCharlton- I think I previously mentioned I've been in touch with the widow of a man who had pulmonary onset ALS. She too expressed shock and disappointment when I told her that no one from ALSA, MDA/ALS, or otherwise, had contacted me to take epidemiological information. Setting up some sort of system for this was apparently under discussion in the 1990's when her husband was diagnosed and she was disappointed to learn this has not yet occurred. It does seem like a big hole in the ALS research models.

 

[Jerry Story]

i think almost everyone in my family had some sort of traumatic injury before their symptoms! my dad was assaulted and suffered a head injury, 6 months later als, my grandmother fell over a gate, on and on. i know my cousin had high amounts of lead in his system. my brother played alot of hockey, i mean alot! so of course he's been banged around. not sure of the other family members but i do recall this discussion many years ago with my family thinking the same thing as you. so let's say it is a trauma or environment~
now what?

janice

Is there a study on professional boxers etc. who get blows to the head? Perhaps they have a higher rate of brain diseases than the general population.

 

[Jerry Story]

Upon diagnosis, I think every PALs should be given a super comprehensive questionnaire examining every minutiae of their lives: where do you live, where did you grow up, was it served by well water, municipal water, describe your diet, how many apples a week did you eat, how many diet cokes, coffees, jugs of milk did you have week, did you have carpeting or tile floors, what laundry detergent did you use, did you have any pets, birds, dogs, hamsters, where you physically active, running, swimming, cycling, soccer, did you have your tonsils removed, did you use a lot of topical acne medication, did you use a lot of anti-perspirants, bug repellants, sun screens,...etc...

The more I think about this, the more I am stunned that I have not been asked to participate in any type of epidemeological study. Nothing - no questionnaires - which amazes me for a fairly rare disease. I think there have been some epidemeological in specific cases, like on Guam - but I am not aware of any larger global studies - which I think is essential.

My fiancée worked at an eating disorder program, and the first thing they asked patients coming through the program is whether they were agreeable to participating in studies.

My fiancée is in 1st year Med School at U of Toronto right now, and for her 2nd year research project she and her friend plan on setting up some type of data base and research questionnaires.

I think that is a [insert cuss word] good idea!
Probably the reason why this has not already been done is that the drug companies wouldn't get to sell any drugs, and the MDs are not paid to do this. One MD told me that finding the causes of ALS is not his job. Of course it was his job! And doing it would be trivial for him, because he sees ALS people all the time anyway.

Make sure the questionaire includes Qs about MSG and aspartame and magnesium and anti-oxidants and veggies.

 

[Jerry Story]

Jerry- Well I have completely eliminated aspartame and severely limited my msg intake so we will see if that has an impact on my progresson.

It will make the progression slower than it otherwise would be. But if possible you should totally eliminate MSG, not merely severely limit it. And remember that MSG exist in dozens of hidden forms. Plus some foods naturally have free glutamate. And there are things that can minimize the effect of the free glutamate: magnesium, anti-oxidants, etc. Read Blaylock's books. And sleep is good.

 

[ladave]

Jerry- I've looked over all of the lists of things that have "hidden" msg and naturally occuring "free" or "unbound" glutamate. I don't think it is possible to eliminate it totally; if you have found a diet program that does so I'd be interested in hearing about it.

I'm going to post the program I've decided on in another thread, I invite your comments.

 

[Jeannie]

Jeannie - I think that you are one of the youngest PALS on this site - any thoughts on why you were sucker punched with ALS at such a young age?

Hi Richard, the only thing I can think of is stress & adrenaline

Check back later, must take my girls to school now.

Jeannie xxx

 

[MarciaA]

Jeannie,
If you don't mind me asking, how old are you? Your picture indicates that you are very young, but I'm not a good judge of age at all. What medications are you on? I know my sister is on Ritulek and her doctor has her taking Kerotine (sp?) (the diet supplement that helps build muscle). She may be on other supplements, too, that I don't know about.

Marcia