Dad Recently Diagnosed -Exploring Possible Causes-Can Anyone Relate??

[crytl27]

My dad was recently diagnosed with ALS a few mos ago. He began having CHRONIC HIVES in 2002 (& has had them everday ever since) - he was exposed to DIESEL FUMES the day he broke out. The muscle cramps started throughout his body about the same time.
He had a HEAT STROKE in 2001 in which he passed out & had to go to the ER. I have noticed that a lot of people w/ALS seem to be very ATHLETIC or have undergone an extreme physical regime. My dad was a "WORKAHOLIC" and he worked lots of overtime and then would come home and do additonal physical work on his farm. He also worked outside in the heat (no a/c in his work truck).
Recently my parents have been researching a theory regarding MERCURY FILLINGS possibly causing ALS. There are a few different websites that describe this theory, the Dr.s and Dentists that support it & their research.

My dad has 9 silver mercury fillings in his mouth & has an appointment to get all of them pulled out in a week.
Has anyone out there with ALS experienced any of these things leading up to their diagnosis?

ps-or is anyone else exploring other theories?

[Meg1]

Scientists who have spent their entire professional lives studying ALS don't know what causes it (although I think it's safe to say that none of them believes it has anything to do with mercury amalgams). Why do you think you can do what they so far haven't been able to, and why does it matter? Your time would be better spent learning about the upcoming challenges your father will face and staying ahead of the disease.

As you research illness in general and ALS in particular you will learn that the world is full of people who apparently exist for the sole purpose of separating vulnerable and desperate people from their money. It seems you have already encountered at least one of them. Even if mercury amalgams do cause ALS (they don't) there's no reason in the world to think that once the symptoms of ALS manifest themselves that removing fillings will do any good (cf: lung cancer and smoking). I'd never dream of advising a person who is already sick to go through such an extensive, expensive and useless dental procedure.

[LeoGreene]

Even if there's the remotest possibility of mercury as the cause - and it would be extremely remote - going through the dental procedure makes no sense unless he has high mercury readings in his blood. And checking for mercury and other heavy metals is pretty standard in diagnosing ALS. I have often wondered what caused my ALS. I was extremely active -- and a workaholic. But so far, scientists have been unable to pin down a cause. There are studies going on where they are looking at possible case clusters. Despite all that --- and I've been a professional journalist for 35 years and would love to investigate this ---- the main thing now is to focus on immediate and long term needs. Getting in the right frame of mind is important. I personally plan to fight this by keeping healthy, taking some supplements, staying active and keeping myself busy. And for fun and to keep my weight up ----- lots of ice cream parties.

[Howdy]

Crytl27 I had aprox 15 fillings replaced about 9 or 10 years ago. I also had about 35 IV Chelation (http://www.alsforums.com/scamwatch/chelation-therapy.php) treatments done about the same time. I tested very high for mercury. This was about 4 or 5 years before I started showing signs of ALS. Howdy

[crytl27]

Thanks for your replies. I really appreciate everyone's opinions & info. The reason my dad was interested in this topic (specifically dental amalgams) was from "scientific studies" discussed in the following websites:


1. ** scam site** link removed

2.Mercury Free and Healthy, The Dental Amalgam Issue
** non-authorative link **

3.Where Do Environmental Toxins Come From?
**scam site** link removed

The reason we have been looking into this is that it is my family's hope that indeed a cure will one day be found for this awful disease...in the meantime we are definitely cherising every moment spent together & consider each day w/my dad a blessing. I cannot feel bad for researching to try & gain a better understanding of the disease that my dad has been dx with, and if I am at a stage that seems immature to some, then I guess I can only apologize and say, "we aren't there yet and we are still holding out hope while trying to deal with reality". Even if a cure is not found in time to help my dad, hopefully it will help someone else's.

[Meg1]

Did you not notice that the sites you referenced are marketing sites--not informational sites? A word to the wise--real scientific information sources don't come with instructions for how to use your credit card and PayPal account on them. This is quackery of the worst kind because it preys on people with real serious illnesses, not on the worried well who can better afford to throw away their money.

http://www.quackwatch.org/01QuackeryRelatedTopics/mercury.html

[xsparklingwinex]

I had my mercury amalgams replaced. I figured it was worth a shot. I'm not for or against it. People do what they feel they have to. I had taken a heavy metals test and came up + for only mercury but in all honesty if toxins is the cause it could be a different toxin then mercury for some, could be a cluster of circumstances. I'm sorry to hear about your dad and I totally understand grasping at straws as I'm sure most ppl with ALS have been there at one point or another. Good luck w/ the fillings. Stay positive!
Love, *Holl*

[Boots]

Can't keep myself from jumping in here on this......I am Crystal's mom and appreciate the fact that she is supporting her Dad in his decision to have these mercury amalgams removed. We only became aware that they contained mercury a couple of weeks ago upon visiting our primary care physician. We aren't gullable people ready to fork over hard earned dollars for dream cures. Yes, the heavy metals test is one of the very 1st tests they do and yes we did it. But, mercury does not show accurately in that test due to the fact that it is absorbed into your fat and organs. Mercury is the most toxic metal known and if more people were aware of the fact that "silver" fillings are 50% mercury I don't think they would want them in their mouth whether or not they "cause" ALS, alzhiemers or a host of other ailments. It is well worth the peace of mind in our case to not wonder "what if". After all when it comes down to it what do we have to lose. Sometimes you just have to take the bull by the horn, you don't just sit there and wait for him to run you over. (Yes we are cattle farmers!:) Thanks to all who comment. It feels good to share...and thanks Crytl for getting me on here. I love you.

[Al]

You have to do what you think is right at the time but armed with a little bit of knowledge. I asked my dentist of 25 years and he said this topic is brought up at every convention and there is no real evidence presented that would convince him to take mine out. If I insisted he would be glad to take the money but doesn't feel it is necessary. So I still have mine. Lots don't. But I have the money to spend on other things. Personal choice as to what is important. Go with what you think is right. Take care. AL.

[MtPockets]

I'm sorry for the pain and worry you 2 must be going through with this disease. I hope your dad, husband does well with this procedure. You are not alone in your thought process right now and in your worries. We have been there and feel your pain and concern. It's a hard walk you have ahead of you, but know we are here to comfort you as much as possible and answer any questions that may arise.

May God Bless and keep you during this journey. Peace and Love.
Big AL
:cry:

[BWk]

Boots and Crystal,
I've had 13 amalgams removed [ Jan. through March] my dentist was not really for it, but I thought I would try it anyway. Did cost me around $3,500 dollars, though ,and it was tough to go through. Can't really tell if it helped or not. I guess it's each persons decision to make. Also it puts a Lot of merc. in your system when they are removed. I based my decision on a report put out by a non profit organization in my state of N.M. I can locate it [report] if intersted in reading it. Barry
May the Lord be with you.

[David]

Well said Meg; that als-options website is one of the biggest scams online when it comes to "effective" ALS treatments.

It's very disturbing that the owners of that site are able to actively market themselves online, purchasing pay-per-click advertising through Google.com etc...

Grrr, hopefully one day there will be a better solution to detering people from visiting those types of websites.

For now, we'll just have to continue making people aware of these scam sites through these forums.

[hope]

cyrl27,

I think your father is lucky to have a son that cares so much. There is absolutely nothing wrong with you searching for hope. I think you should be very proud of yourself for trying to find a cure to help your father. I too am cherishing every moment with my love one. It hurts terribly to be in this and it hurts so much to feel helpless. Doing what your doing shows courage and strength to fight and never ever give up. Sometimes even searching the same thing over and over is okay too. It means that something may have been missed. Keep up the fight and do what you feel in your heart. No one else in this world knows exactly how you feel. We only know how each of us as an individual feel. The road can be rough but if we keep hope in our hearts then we know that our loved will may someday be cured.

Sandy.

[Boots]

FYI-Dennis had 10 teeth extracted today, nine of which were mostly "silver" filling. We chose not to disturb the poison anymore than necessary by pulling them and now have the peace of mind that they are gone. If any improvements occur involving his chronic urticaria (hives) or his ALS that's icing on the cake. The oral surgeon did make it clear that he did not believe in what we were doing and was actually kind of a smart a**. But then again he belongs to the association that forbids him to say anything else. I also believe if it were HIS LIFE we were talking about he would have a whole different philosophy. Hopefully some day everyone will know about the mercury content in a "silver" amalgam and choose not to use them. We only became aware of the fact this month and that was through our physician, a humanitarian who cares about us....Not someone trying to sell us bogus products. Anyway it's a bit of a hot topic these days, so I'm sure there will be more and more heard about it. Hope everyone is staying cool. Boots

[Meg1]

Oh for Pete's sake. The ADA doesn't "forbid" a dentist from expressing an opinion about anything. And there are plenty of us with health problems identical to your father's who would never dream of having a third of our teeth pulled in order to address a "problem" that doesn't even exist. I realize that this dental amalgams/ALS/poison thing is new to you, but that doesn't mean it's any sort of revolutionary idea--scam artists have been recommending it for years. 60 Minutes did a much-derided story on it over 20 years ago. It's well-recognized quackerey, even if your kindly doctor believes the hype (is he an ALS specialist, BTW?).

There are all sorts of ALS cures and treatments out there that can be bought for a price. None of them work. When an effective treatment does come around, you'll find out about it from ALS experts--not sympathetic family physicians, marketing websites and doctors in undeveloped countries.

I strongly suspect that the next sure-fire cure you'll fall for is the it's-really-Lyme-disease story. There are a number of doctors in the US who will, for a very high fee, diagnose Lyme in PALS and recommend long-term IV antibiotics. You will think it's some sort of brand new, untested idea and you'll jump on that bandwagon, subjecting your father to the side effects of strong antibiotics and possible infections from his PICC line. I've seen it happen here before (one poor man couldn't even use his long-dreamed-of new swimming pool in the last mobile summer of his life because he couldn't immerse his PICC line). When that fails maybe you'll travel to China for Dr. Huang's amazing olfactory cell treatment which you will believe is revolutionary because you've never heard of it until now. In fact, it's been around for years at this point, is dangerous and unsanitary and has lead to early deaths in many PALS. But why listen to me? You're determined to "try anything." Right?

Learn from the old timers here. I strongly believe that many of these pocket-padding "treatments" recommended by well-meaning but uninformed friends and relatives put PALS in early graves.

My advice for PALS? Put your financial/family affairs in good legal order then forget about them. Eat a healthy diet, exercise to the extent your muscles can tolerate it, lose weight if you need to, stop smoking, travel, spend time with your family, take antidepressants if you need them, live life to its fullest, think positively and get on with the business of living your life. Don't spend whatever time you have left tilting at windmills and subjecting your body to stresses that will do it no good. I firmly believe that you'll live longer and have a higher quality of life if you do the things I suggest than if you pursue "everything."

[Al]

AMEN Meg1. I agree 100%. I've seen a few things around here and other places over the last few years and I just removed another "Clinic" advertising great things with stem cells. People can be so cruel to take money from the uninitiated suffering from this disease and others.

[Boots]

Meg-As I am new to this forum, I am not familiar with YOUR story. Are you a PALS or connected in some way to one who is? Just wondered. You seem so strong in your opinion concerning the mercury amalgam issue. I'm sorry that you feel the need to preach to us about your view. We have several personal reasons besides the possible connection of mercury and one's health issues, for deciding to extract teeth. I am only sharing my experience here and looking to hear from those with similar views, which is why I participate in this forum. I'm not here to criticize or judge others nor do I need to be by you.

PS... Yes you are correct in saying that the ADA allows a dentist to "express their opinion" but they do pretty much forbid removal of a filling for the pupose of eliminating mercury. I have a copy of The Johns Hopkins Medical Letter dated September 1990 that I received from my mother-in-law the day before my husband's oral surgery. The article is titled "Are Your Dental Fillings Poisoning You?" It reads: "...The American Dental Association, concerned about the eagerness of some dentists to replace people's fillings, has included in its code of professional conduct the statement: "...the removal of amalgam restorations from the nonallergic patient for the alleged purpose of removing toxic substances from the body, when such treatment is performed solely at the recommendation or suggestion of the dentist is improper and unethical." Our oral surgeon even had us sign a paper stating that he did not believe in removing mercury fillings and that it was not his philosophy before doing the procedure. I believe he was protecting himself. The same article also mentions that every year 100 MILLION cavities are filled with "silver" fillings. Yes, it's a pretty big bu$ine$$. I'm sorry but just because they say it's safe doesn't make it safe. I guess you believe in asbestos too!!

[Al]

Ok guys I don't think anyone is criticizing anyone else here. Boots you are quoting a 1990 article. I think things and ideas have changed since then. While the filling issue is a bit controversial it as like most things with this disease a personal choice. Spending $5000 to remove fillings is the same as spending $30-$40,000 to have some chinese doctor drill holes in your skull and inject what he says are stem cells (ARE THEY REALLY?) Some are for it and others say it is quackery. Let's not lose sight of what we are here for.
Helping others and keeping informed. No harm intended by you or Meg I hope. Just information. AL.

[Boots]

Al,
Thank you for your comments. I fully understand you and Meg are on the same page concerning this issue. I don't care to debate it. I am actually through discussing it. I will say that since you two seem so concerned about the cost for extracting teeth, our insurance is AWESOME and the out of pocket was minimal. Also we have numerous reasons for taking the route we did. Nuff said. Boots

[MtPockets]

I don't feel anyone is here to attack whatever method of treatment a person may or may not chose to use if they think it will help them or a loved one. A problem may arise when some of us are so frustrated that there is no viable treatment for ALS that we get upset when we see anyone in our group do something that we ourselves would not chose to do for our loved ones or for ourselves.

For example when the time comes, I am getting a feeding tube put in even though I know it will not "cure me", it will give me more time with my family.

I have 4 children. One son is an emergency room Doctor, another is graduating from Law school, another son is with the Sheriff's department, and my daughter works with an agency helping the Katrina storm victims, since we live in Gulfport, Ms. I also have 14 grandchildren and the longer I can be with them, I'll do whatever I have to do. I however draw the line at CPR and I have a do not resuscitate order.

That being said I know there are others that decided not to have a feeding tube. God Bless them, that is their choice and I respect them for their decision. We all have difficult decisions every day, but lets support the right for others to chose their own treatment, even if we do not agree with it.

I know we all have our own quirks and differences, but one thing we have in common, we have or we are helping someone that has ALS and the best attitude we can have is to support each other to the best of our abilities.

To sum it up, Show some Love. compassion, and understanding.

Please I am not getting on anyone's case here, I am just saying we all are upset, even mad as hell about this disease and what it is doing to us, and we NEED each other to help us make this journey as painless as possible.

May God Bless you all and help us please to help each other.
Big AL:oops:

[Al]

AMEN and well said Big AL. Nuff said.

[Beebe]

Just wondering where my post from yesterday went. Actually two in a row because I needed to add something on. This thread was very upsetting to me and find this happening quite a bit lately. I feel bad for new pals it wasn't like this back a few months ago. Maybe people outside of the United States should do further research. There are many many research and clinical trials going on right now here in the U.S. Didn't want to bring up amalgans again but a Dr. Recommended my son=in-law have his fillings removed. Interesting a month later his metal levels went down. As I said everyone is different at least we know we did what we thought was best!!!! We are all in this together!! My Best to all , Beebe

[Al]

Hi Beebe. I read your 2 posts and know they were there last night. I can assure you I did not remove or move them. Possibly David has done something with them. He is the ultimate authority here. . I only get to play along and try to keep everyone happy. With a few moving and deleting privileges as well. Usually it works well but sometimes things get moved and I don't hear about it until later. Sorry. AL.

[BWk]

Crystal,
Have you ever had any clues as to what might be causing the hives? And for such a long period of time! Would help a lot I bet to get rid of that annoyance? Bad enough having als without anything else. BWK

[Meg1]

Here's some tough love, mcpal: Did you do the things you did for your father because you really believed they would help him, or did you encourage him to put himself through whatever lyme "treatment" he endured because it made YOU feel better? One thing I notice on these forums is that most PALS come to accept their condition well before their loved ones do.

And, you know, your anger at me is misplaced. If these miracle cures really worked, nothing I say could change their effectiveness--if lyme treatment (or mud baths or amalgam removal or Chinese herbs) really cured ALS, you could smugly go about your life, secure in my ignorance. But we both know that there is no effective treatment for ALS and it's frustrating--it feels better to lash out at someone than wallow in sadness.

I know that it makes some PALS hopeful to "do everything." Perhaps if they really believe they are treating their illness, that may increase either the quality or, less likely, the length of their lives. The placebo effect is real but it's more effective against things like headaches and gastric problems than a disease like ALS. And PALS need to realize that these miracle cures are not without risk themselves--they are often expensive, can be time consuming and many have severe side-effects. As I said before I think they almost always do more harm than good.

It's all a question of how we want to spend the last years of our lives. I've seen friends with cancer go through hellish and ultimately futile treatment regimines and thought about how much more pleasant their last few months would be without the ravages of experimental chemotherapies (and I'm not even talking about the quack foreign clinics some of them resort to). Of course with cancer, most of these treatments have some medically documented chance of working so it usually makes sense to at least try them. Unfortunately, the medical community hasn't come through for us. I'm crossing my fingers and continuing to happily live my life until they do.

[Howdy]

The Food And Drug Administruction has approved Chelation Therapy for heavy metal poisoning. I had about 35 IV treatments 4 or 5 years before I came down with ALS. I tested very high for mercury before the tretments. I don't think they will help for ALS Howdy

[hope]

If know ones minds I would like to through in my two cents here. I speak for how I feel. I personally believe that when you love someone you do everything you can to fight for there life. Some of the things tried may not work, they may work for some and not for others, but knowing that I as the wife of someone with als tried everything to help the one I love so dearly get well makes me and my loved one feel hope. It is so important to live with hope in our hearts. Yes, I agree there is anger and frustration because we cannot find the help or we cannot find a cure but for now I myself will exhaust every avenue to keep that hope alive. The human heart is amazing, you feel, you live. You stop feeling life will flow by. Never ever give up. Reach out if this is what you need to do, do what you feel in your heart is right not what others may feel is right. This illness brings many emotions with it and the anger yes sometimes is misdirected. I personaly feel that patients and families are given this diagnosis and are expected to figure it all out at times. We do not know what comes next, we are all scared, there is emptiness, lonliness,pain and all each and everyone of us are searching to hold on to our precious loved one. I will search and will continue to search to help my husband, I will never give up, I will ask questions to doctors, I will suggest that many things need to be looked at including helping families more cope. We are human, we are not machines, we are all precious and what is needed most here is a hand that reaches out to guide, to show compassion and care. I believe that many times we get angry and speak out because we just do not know which way to feel.

Everyone on this site is hurting so much. You hear the pain from the words. Everyone on here is searching, instead of saying to each other do this or do not do this we could say this did not work for me but may work for you. Support each other, be kind because no one knows more than we do how much this horrible disease hurts. I respect all of you and know that a rainbow is there somewhere, working together we may make the rainbow show.

Sandy.

[Al]

Ok mcpal89. I just went back through all the messages in this thread and deleted your messages because I have never seen such hateful messages posted on this forum and will not allow it. No one said anything justifying a message such as you posted. Opinion is one thing but hatefulness and bitterness are another thing. You don't give any information in your profile about where you are from or why you are here. Obviously you registered to cause trouble and if there are any more incidents you will be banned. Staff.

[David]

The user has been banned, the forums will not tolerate this behaviour.

This is a place to find help, not for ranting, raving, selling, marketing, advertising, or spreading misconceptions for the purpose of having individuals affected by ALS waste money and time. Enough said :)

[Beebe]

Hi there, Just wanted to tell you how beautifully you put in words what we feel. Our family is full of love and caring. We are all together in this fight. My grandson is 11 he spends a lot of time with his Uncle Jack. They live a few blocks away we are a close family. They play video games and talk and laugh he wants to be around to keep an eye on Uncle Jack and help him. My daughter is at work makes her feel better knowing Kenny is there. He's the best. As the months go by we see the progression and need to talk to someone who cares . We need to cherish every moment and do whatever we can to deal with this devasting disease. Thank you , I found some comfort in your words and that's why we are here. My very Best to you. Fondly, Beebe

[Al]

Thanks for supporting my decisions David. We're only here to help each other. AL.

[caregiver0204]

I was glad to read your post, something a lot of us would like to say but may fear the outcome. I know you have the right idea and we have chose that path as well. Cheers to you and yours. :mrgreen:

[hope]

Beebe,

Thank you for your kind words.

Sandy.

[MarkNH]

David & Al, I have a question for you. After lots of research I chose to have my amalgams out 6 weeks ago. My symptoms doubled in a couple of weeks and I lost half of my upper body strength in the same period. Any thoughts on this? If mercury isn't related to ALS then is this in your opinion coincidental?
Meg1, I would be interested in what you are doing/have done for treatments as you are a 7 year survivor of ALS and haven't filled out your treatments profile on PLM.
To all three of you, I haven't heard you express an opinion on the PON gene studies yet. Is the toxin connection an abberation or a clue?
Thanks, MarkNH

[Al]

Well for one thing there are theories about trauma having something to do with ALS. To some people having a lot of dental surgery is considered trauma. Could just be coincidence or if the theory is right and you believe others that taking out fillings releases more mercury into your system than leaving them in then maybe you made a big mistake. Who really knows? You have to do what you think is right for you at the time.
I'd have to read up on the gene studies to offer an opinion but I do believe in the environmental toxin theory.
By the way may I ask where you are from? AL.

[MarkNH]

I am from New Hampshire. I am a PALS of over 4 years duration. I'm still driving and working full-time. I don't take prescription meds, only herbs and supplements. Here's the link to one of the gene studies:

http://www.mda.org/publications/als/als-curr.html#detox

I'd be interested to know what you think Al, because this study gets almost completely ignored on other sites. It's like noone wants to hear it for some reason.
MarkNH

[Meg1]

Meg1, I would be interested in what you are doing/have done for treatments as you are a 7 year survivor of ALS and haven't filled out your treatments profile on PLM.
To all three of you, I haven't heard you express an opinion on the PON gene studies yet. Is the toxin connection an abberation or a clue?
Thanks, MarkNH

Hi Mark. Good to see you--I haven't seen you around in a while.

I haven't filled out my treatment profile because I haven't attempted any treatments. By the time I was officially diagnosed (in 2003) it was apparent that my progression was very slow. I was offered Rilutek, of course, but refused it because I was taking other drugs that taxed my liver, was concerned that there was scant long-term experience with Rilutek (and I knew I would be a long-term survivor) and because I didn't want to upset whatever was making things work so well for me. I suppose that if I had begun progressing more rapidly at any point I might have begun the Rilutek (and still could, I guess) but basically I have just kept on doing what I was already doing--eating a good, healthy diet supplemented with lots of things I like such as diet sodas and desserts, exercising regularly and taking a multivitamin, a B supplement and magnesium for leg cramps. And that's pretty much it.

As for the study you mentioned, I have read it and it sounds promising. I have long thought that even though I clearly don't have FALS there is likely some genetic component to even the sporadic disease. Other than that, the causes don't interest me a whole lot. There are plenty of diseases whose causes we know all about that we can't cure (lung cancer, liver cancer) and loads of others that are very successfully treated and/or cured without knowing the cause (childhood leukemias, several of the ALS mimics like MG and MMN). I'd much rather the researchers concentrate on cures than causes.

[MarkNH]

Ah, but Meg my dear! If you can find the cause, such as faulty Pon genes, then it should be a relatively simple matter to deliver a gene modifying virus to help cure it, right?
And the red flag in this study is two fold...genes and toxins. Everyone seems to be missing the point that at least in some cases toxins cause ALS. This is the first Western supported clinical, unrefutable evidence of this, and it seems rather important to me. MarkNH

[Meg1]

Ah, but Meg my dear! If you can find the cause, such as faulty Pon genes, then it should be a relatively simple matter to deliver a gene modifying virus to help cure it, right?
And the red flag in this study is two fold...genes and toxins. Everyone seems to be missing the point that at least in some cases toxins cause ALS. This is the first Western supported clinical, unrefutable evidence of this, and it seems rather important to me. MarkNH

Can you name me another illness/condition for which a gene-modifying virus can be delivered in a relatively simple manner to cure it?

You know, Mark, this may be it. This may be the holy grail of a cure. But anyone who has been around the ALS community as long as I have has seen lots of promising research and drug studies that looked (to a layman's eye) pretty bulletproof. I've learned not to get my hopes up.

[Al]

Hi Mark. I read the link you submitted and found it interesting. My neurologist has told me he is leaning towards a genetic weakness combined with toxic exposure as a cause for ALS. He is now attempting to get funding for a research study. As for the Gulf War Syndrome no one really thought that the military would admit they poisoned their own people. That is just not done by any military anywhere. Not sure if you're aware of this but this will be a Canadian study. Not that that should make a difference but similar theories coming from different countries makes me think that maybe somebody is on to something. Lets hope so. AL.

[MarkNH]

Al, I'd be happy to be an enrollee! Meg, I know, I know! Since about a month and a half ago most of my time is spent in a wheelchair, so I'd love to find something to at least stabilize my condition.
Mark

[Al]

Hey Mark. You might NOT want to part of this study yet. He wants part of your brain and spinal cord tissue at autopsy. I told him he could have mine but I'm not finished with them yet. Hopefully we won't be in his study for quite a while yet. Take care. Have a good day. AL.

[susantarlton]

I believe that when the cause is determined it will be a combination of spinal cord injury, either sports related or an accident, and environmental contaminants. I feel that everyone should do a lot of research and determine a plan to follow, then follow it. My only suggestion to anyone is to remember that HOPE is not a plan...it is only hope. I am so glad to find so many old friends here, it is like old home week. Hugs

[Al]

Hi susan. Welcome. Where do you know anyone from? I don't recognise your name and you didn't give any info in your profile. AL.

[John1]

Hi susan. Welcome. Where do you know anyone from? I don't recognise your name and you didn't give any info in your profile. AL.I think Susan is from the presently moribund BT forum.

[Snowbird]

Hi Crystal!

I am sorry to hear about your dad. As everyone has mentioned, spend your time, money, and energies enjoying your dad and your family. Build more precious memories, lots of them.

What really helped me to make our days happier (and this is not a commercial), was purchasing Dr. Laura's book on the 'Proper Care and Feeding of Husbands', which is spiritual feeding of course. It came at just the right time, and I have since adopted my life to many of her theories. I have no regrets and no anger over the time that my husband and I "LIVED WITH ALS".

Yes, "LIVED", ...........that is the key!

I also researched possible causes of ALS in the hopes that the information might help future victims in preventing them from acquiring the disease. I did my research on this forum by asking other members what their life experiences had been. Some will remember when we all worked on this. It was a great discussion.

What we noticed were a few similarities, and to this day, I would put my life down saying that 'inhaled fumes' attribute to 90% of ALS.

Where I live, the stats indicate that the highest incidence of ALS is amongst farmers, second is the auto industry, and third is firefighters.

Well, quess what! My husband has farmed his entire life. (Lots of chemicals, sprays, aerial sprays, etc. etc.)

He also owned an auto and ag equipments dealership. Chemicals, you bet, including paint shop.

AND he was fire chief for many years. Three strikes against him.

All of those contrubute to countless opportunities for inhaled fumes. AND my father-in-law and brother-in-law also died at very young ages of cancer. They worked with my husband in the same industries.

All three of these men were private pilots, and fueled their own aircraft.

They also used diesel fuels and gasoline extensively.

We found on this site that there were a few ALS victims that were involved in aviation maintenance. Once again, fumes. I don't think that we had any commerical pilots, but I could be wrong.

There was also the soccer or football team in Italy in which half of the team acquired ALS. They found that the grounds were maticulously groomed and lots of chemicals were used on the greens. Lots of 'face plants' on the grass.

One of our equine vets told me that he lost 5 middle-aged large-animal veterinary colleagues to ALS.

You will find that the people on this site will be far more helpful to you than much of the other commerical research. As suggested, some of those have hidden agendas. However, the people on this site are actually LIVING WITH ALS. They welcome you and your family on this site, and they will help you with any of your questions.

If you can think of the wiring to your muscles being like an electrical cord, imagine that one or more of the interior wires gets damaged and the messages no longer reach the muscles. That is how our neuroligst explained ALS to us. With MS, the insulation becomes damaged, but not the wires themselves. That makes sense to me and helped us to understand the disease.

Keep asking your questions on this site, and see what others have experienced.

Above all, treat your dad like the king he is, and your mom like the queen she is. Try to enjoy your lives, and above all, look after yourselves. I didn't look after myself, and I paid the price. Now I am healthy again, but there isn't a day that goes by that my husband doesn't talk to me in one way or another. I am so grateful for his memories and his constant presence.

Best of luck, and we all love you.

Pat