View Full Version : Attention all recently dx'd PALS
rcharlton
02-26-2006, 05:48 PM
My neurologist Dr. Strong has told me that he and his colleaques around the world have noticed a surge in ALS cases.
There could be a myriad of reasons for this - including better diagnostic tests - but it could also mean there is something going on.
Now it appears to me that there a number of fairly young males who have recently joined this site who were diagnosed around last summer. Any young femals PALS out there who are recently diagnosed?
Now I know that a lot of older PALS are probably less inclined to use the internet - so that may be why we don't hear from them.
OK - so all of you recently diagnosed younger males - what's up? What environmental factors have you been exposed to?
What do you do that different than those around you? Maybe there are some common elements....
For me:
I've eaten an apple a day for my life - pesticides?
I'm an avid cyclist - car exhaust?
I swam a lot - chlorine?
I have always had a dog
I grew up in big city
A few months before my dx I slipped and banged the side of my head and nearly had a concussion - trauma?
I burn easily
I'll keep thinking.
Obviously there are millions who do the same things I do - but maybe PALS have less tolerance to some environmental factors - so let's put are heads together to see if there are any links...
John1
02-26-2006, 06:10 PM
I'm a middle aged male (48 at symtom onset) but your ideas of PALS being more susceptible to some environmental shock that triggers the process resonates with me. Probably coincidence, but similarily to you, a few months before the first symptom I nearly broke my neck in a diviing accident and wore a neck brace for sometime. I did quite a bit of damage but none too serious UNLESS it triggered my ALS. I have often wondered about it.
Bugsy
02-26-2006, 07:57 PM
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
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
ladave
02-26-2006, 08:27 PM
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.
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.
joejoe
02-27-2006, 12:00 PM
Richard,as for me I am a store Mgr for a supermarket and I check on produce deliverys on a daily basis and the only way to check quality is by trying the product.I have not only apples but also grapes,all types of berries,and melons everyday for the past6 yrs(you would assume your getting all your vitamins) most times we wash but somtimes just wipe on your shirt.As for smoking I quit 3.5 yrs ago and chewed gum like a horse everyday for 6months ( lots of aspertame).In 1999 was in mexico and hit my head in a pool and ripped the hide right off of my head! Was in landscaping in the u.s. till i was 19...then moved to T.O.Most all my family members are in landscaping no one with any neuro issues. Hope this helps
Joe
On the enviromental note...my dad was a dairy farmer from his early teens until about 15 or 16 years ago. I know he was around all sorts of bugs and germs.
Dana
linken
02-28-2006, 02:52 AM
My former partner (35 years old)who has got als, has been exposed to pesticides which we sprayed inside the house several times, and has also been exposed to noumeros toxic substances. He likes to work with cars, motorcycles, opens up electrical devices and so on. I know this contains flame ratardants. Sorry for my bad language, I,m a norwegian.
I believe that it is the food we are eating. There are so many additives now in food it makes one wonder if this is what is wrong. It may effect some people more than others. Microwave cooking, quick meals, foods that are cooked you just heat them up, is it possible there is something to this?
Sandy.
TBear
02-28-2006, 08:11 AM
I'll wade in on this too. I'd known my wife since we were 14 so I know that she was pretty careful about what she ate, drank and what went on around her. About 3 years before she was diagnosed, her classroom was cleared of asbestos. The process took nearly a month to accomplish, and the only barrier that was in place was some 6 mil plastic. Following this, she managed to survive 2 at fault, major auto wrecks (try paying $10K a year for insurance for awhile)... cause or result? Also had a pretty good apetite for good wine.... but I won't even consider that. The thing is that we were together for nearly 36 years... she was stricken and I haven't been... so where is the consistency?
I'm thinking that there may be some susceptability to environmental risk that we may or may not have... but that's why I donate money to people who have a better understanding of genetics and cell interactions than me... yes, those demon doctors who also push drugs on us! At the ALS clininc that we used, the neurologist took a lot of ancecdotal information. I'm sure that there is a central repository on information on all of this stuff. The more we share the faster the linkages will form and, with luck, the quicker the solution will form.
CHeers
T.
When they take a few day old chick and force feed it for 40 days and it becomes a 3 1/2 pound mature chicken then I think we are putting too many chemicals in our food.
Granny
02-28-2006, 02:18 PM
Hey there,
We are all starting to sound like Jerry.
Maybe he is on to something.
Seriously, there has to be things out there that are really bad for us, the hard part is how do we find them and how do we avoid them and still live as full a life as possible??
Love and hugs, Leah
janicebuf
02-28-2006, 04:52 PM
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
Carol Deboer
02-28-2006, 10:26 PM
Henry played hockey all his life. At the amatuer level and semi pro. He took a lot of hits to the body. I cannot even beging to count the stitches, he broke his nose 4 times, wore a slapshot in his right eye in l996, and lost his sight for a few months in that eye. It was a bad injury. He also was a bricklayer builder that worked with mortar and dyes and antifreeze etc... Is it all related somehow? I would love to figure it out. It seems everyone has had some kind of bump on the head here except me!!! I am the only one that still has all my marbles !!! ha......And, is Jerry really on to something? For the most part I think so. However, we could go on and on about that subject too. And, for as much as my old memory can remember we have beat that horse a few times too. Concrete answers would be so nice, will we ever get them is another story. Have a good night all.
Stay Strong, Carol
ekoozmin
03-05-2006, 02:25 PM
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
03-14-2006, 10:18 AM
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
03-14-2006, 04:16 PM
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
03-14-2006, 04:32 PM
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
03-14-2006, 04:32 PM
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
03-14-2006, 04:39 PM
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
03-14-2006, 04:43 PM
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
03-14-2006, 04:48 PM
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
03-14-2006, 04:52 PM
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
03-14-2006, 04:55 PM
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
03-14-2006, 05:05 PM
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
03-14-2006, 05:12 PM
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
03-14-2006, 10:21 PM
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
03-15-2006, 02:28 AM
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 :confused:
Check back later, must take my girls to school now.
Jeannie xxx
MarciaA
03-15-2006, 07:39 AM
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
Jeannie
03-15-2006, 08:15 AM
Marcia,
I dont mind at all, I will be 28 on the 24th March, I take Quinine for cramps & baclofen for spasticity. I have tried numerous regimes, non of which have help my als, I even tried HUCB (human umbilical cord blood) which did improve my mobility for 5-6 months.
Jeannie xxx
MarciaA
03-23-2006, 03:12 PM
Jeannie,
Does the human umbilical cord blood have to come from a relative or how does that work?
Marcia
MarciaA
03-24-2006, 07:43 AM
Jeannie,
Hey there! Happy birthday! I hope you are able to celebrate!!
Marcia
Happy birthday from me too Jeannie
Al
Jeannie
03-24-2006, 11:23 AM
Thank you, Marcia & Al:D
HUCB doesn't have to be from a relative (mine wasn't), you obversely have to have blood type matched. Many pals had the same treatment at the same clinic as I (Atlanta Georgia), the results varied for each pal, some never saw improvements & some did.
It wasn't a painful treatment, just an IV in the arm or hand over a 3 day period (20 units of blood) sitting in a recliner chair, If it wasn't for the expense $20,000, I would do it all over again, maybe 3 times a year.
