Any thoughts on why you got M.N.D ?

[feeling helpless]

Hi there, me again.
As you probably all know now, dad doesn't have long and one question still bugs him and would like to know if anyone else has any ideas on why they may have got M.N.D and can you relate to any of his theories.
Theory one : A few months before onset of first simptoms he had an operation on his hip. He was woken up during surgery in agony and asked to wiggle his toes. The surgeon denied this at first but when he persisted and threatened legal action the surgeon admitted he had woken him but never admitted why. He has since been told this was highly irregular to wake someone in the middle of an operation unless they had a concern about something they had done.
Theory two : He has always worked on a farm , firstly on a dairy farm using highly toxic chemicals for sterilization etc and later with various other chemicals related to pesticides etc.
The third theory which we have all pretty much dismissed is the car accident he was in shortly after his hip operation. It was only a minor bump and he suffered minor whiplash for a couple of weeks.
It's the one thing, with all this research going on, that no-one has ever asked him about and can't understand why they haven't asked him.
So he's asking you guys,... any thoughts/theories you may have on why you got M.N.D and if you have had any similar probs to any of the above with similar time scales ?
Thanks .

 

[joelc]

Everyone speculates on what might have caused their ALS. But the real truth is that there is no way to know and there is no known cause.

You could drive yourself crazy trying to figure it out so I encourage you to not think about it and move on with your life!

It is just one of those things that happen and it is nobody's fault. It can't be blamed on anything or anyone.

Best to concentrate on other things and enjoy each day to its fullest.

 

[rocmg]

Serious past head trauma and/or genetic predisposition or vulnerability to toxic/environmental poisons have been brought up a possible causes. but no one really knows -- if they did, perhaps finding a cure would be easier. as joel says, no one knows why. it certainly isn't the fault of the person who got it. it would be "nice" to have something to blame... unfortunately there isn't. all we can hope for is that something works to arrest this disease and reverse the damage it as soon as possible.

 

[kylisa]

My mother didn't have anything in common with any of them. She was playing ball in the yard in late April 2007 and progressed from slight footdrop, to cane, to walker, to wheelchair by January 2008. She is now bedridden and fed through a tube since Oct 2008.

The only thing that stands out as a possible cause of her's is that she had a reaction to a flu shot in 2005. It made her so sick she was in the bed for almost a week.

 

[DgtofTNfan]

I wonder if there is any organization out there taking a history of each person who has been diagnosed with ALS to find similarities given the cause is unknown. I know that some PALS are participating in research but research is not an option for some. So does anyone know if there is a national or global effort to at least catalogue history of people with ALS?

My Dad was diagnosed with ALS in Feb 09. The neuro MD took a history and specifically noted that Dad was a veteran and that he worked in an assembly plant for 35 years.

 

[GlenBrittle]

I have thought about this myself.
The answer is not really known, YET. Go researchers go.

My current theory is "SHIT HAPPENS" :evil:

I have been struck by lightening when I was young. I do remember my left leg being numb for hours .

I have had many hits/smacks/bangs on the head through the years. Yeah , I'm clumsy.

Never being scared or showing a respect for electricity , starting at age 5 , I have given myself some really good zaps over the past 45 years.

Going forward , it doesn't matter, I'm fighting for my future , I've already had a good past.

 

[rose]

There is another thread about this, titled What did everyone do for a living? (or similar wording) You should find it interesting to read through the several pages of responses.

I think there are too many variations of how a person experiences MND for it to be only one cause.

& Glen,yeah, that's pretty much my current theory too!

 

[BethU]

DatofTNfan ... After many really stupid delays, a bill passed Congress in 2008 calling for a nationwide (US) database of ALS patients. I don't think it's started up yet, but hopefully it will begin soon.

When it does, I think they may find some surprising information.

 

[feeling helpless]

Interesting point from DatofTNfan... My father actually requested to take part in some research and be a guinea pig for any future experiments for want of a better word. He was refused because 'he had progressed too far at diagnosed' ? Go figure !
His way of thinking was he's led a very fortunate life and managed to do all the things he wanted to so far. There's nothing left he wants or would have wanted to do. But his way of thinking was, not everybody is this fortunate and he genuinely wanted to help those in the future, near or far to find a cure or at the least a positive way forward in this disease.
It's like cancer... we don't know why some people get some kinds of cancer but we have gained some pretty good ideas of what doesn't help ! It's not a cure but there's hope and some procedures have already been proved to work in a lot of cases. If cancer hadn't had as much research or guinea pigs, would we have got this far ?
I think there should be some more intensive questioning on peoples lifestyles etc at diagnosed.
The only opportunity to discuss what he felt were possible traumas or incidents in his life was last week, when the district nurse came round with his end of life drugs, drips and equipment to be placed in the house ready for when he needs them. I think dad felt this was a bit late in the day to be asking these questions, especially as he can only talk for a couple of minutes. Not exactly much time to get your point across !
He remains as positive as he can be at the moment, bearing in mind he has been told he has not got long, he harbours NO regrets and is not bitter at all about this illness... Just curious to know more given the chance..
Thanks to evreyones thoughts so far.

 

[CRF8]

why you got it

my wife, her sister & I have filled out a long form and given blood to a study attempting to find common denominators in ALS. I urge everyone to check current studies & see what they can donate.

 

[hgsunny]

My dad was recently diagnosed, and I would like to do all I can to help with research on the disease.

Has anyone compiled a map that shows where PALS live (or have lived for a period of at least five years or more)? I haven't found anything like that. I would like to look at that information.

Can anyone suggest the best course of action in conducting my own study? To make sure I contact as many PALS as possible, would I need to contact local ALS groups/chapters?

Thanks.

 

[BethU]

hgsunny ... I'm so sorry about your dad's diagnosed. I'm glad you found this forum ... you'll meet many helpful people.

So far as I know, there are no demographics yet on the distribution of ALS. A comprehensive national (US) study has been approved by Congress, but who knows when it will begin.

Contacting your local ALSA chapter is a great idea. You will surely find some great information on your dad's situation, and gain some support too. As far as doing a map, that would be a huge undertaking, but I'm sure would reveal interesting and important information.

Good luck.

 

[LeeLee]

Hi--I wonder every day how I could have contacted this disease. I have had Mono, Lyme's Disease, Crohns Disease, many surgeries and neck surgery. I guess I have inherited every bad gene in my family but I have accepted this disease and while it is moving slowly, I am moving as fast as I can! Blesssings and best wishes.

Bulbar onset October 2007
Dx ALS December, 2008

 

[hgsunny]

I found a paper that discusses mapping/database of ALS patients; however, the link no longer exists. I have contacted the three authors of the paper. If the database exists, I will let you know.

 

[Wendi]

Where I was living in 2002-2003 there was spraying overhead by a plane to eradicate a moth that had got through the borders. We were sprayed 14 times. People tried to stop it, but couldn't.
Now I have found out that in that area there is a cluster of ALS/MDN cases, and me. Helps with the depression, and replaces it with anger.

I think it is toxic chemicals and a predisposition. Just my thoughts.