Old 09-15-2011, 08:35 AM #1 (permalink)
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Default Speaking of head trauma

If you were a FALS family would you discourage your children from sports like football?

We have the SOD1 gene mutation in our family and my sons are 2 and 4. My mom had the mutation but it remains to be seen if I do.

It's quite possible that the sporadic form which has in some cases been linked to head trauma would have positively no relevance or increased risk factor for FALS.

But I just have my head in prevention mode and feel scared to let my boys play football.

What does everyone think?
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Old 09-15-2011, 09:49 AM #2 (permalink)
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Default Re: Speaking of head trauma

Prevention mode is a safe concept in all aspects of life. It sounds like you have a few years to decide while the doctors continue to evaluate and study head trauma and the effects it has on the human body. We need to remember that ALS is a neurological disease diagnosed after All Other Diseases are ruled out. Because ALS affects all of us differently, there becomes no rule of thumb as to what the disease truly is other than the fact that our nerves breakdown and starve our muscles resulting in paralysis.
I almost find it humorous that we might finally have a connection between one cause of ALS and everybody seems to discredit it. It is almost as if people are saying " That can't be ALS because we know what caused it."
By studying the bodies of a few players after their death, the researchers determined the former players’ bodies contained high levels of two proteins known to cause motor neuron degeneration. They had never seen those proteins in other patients diagnosed with ALS, which lead them to believe football players who have suffered concussions and head blows are experiencing something similar to ALS that develops in a different way.
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Old 09-15-2011, 01:20 PM #3 (permalink)
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Default Re: Speaking of head trauma

I don't think there's an easy answer to this one! You can't wrap them in bubble wrap (much as we as parents might want to) and yet you don't want to take foolish risks either. I think head trauma helped accelerate Glen's illness, especially the FTD portion.. long story but he fell off his bike and damaged his helmet badly enough to make it unusable.

I think my first step would be to talk with a knowledgeable neuro. Are you on good terms with the doc who took care of your mom? After that, I would want to know how current the teams your sons would be playing on are on following safety rules regarding high hits, concussion prevention, etc. Be proactive. Make sure they are using up to date equipment, etc. And of course make sure the boys are wearing helmets when they bike, skate, etc.
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Old 09-15-2011, 03:49 PM #4 (permalink)
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Default Re: Speaking of head trauma

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Originally Posted by Daniel Hopper View Post
I almost find it humorous that we might finally have a connection between one cause of ALS and everybody seems to discredit it. It is almost as if people are saying " That can't be ALS because we know what caused it."
It gets discredited because for every one person who has a head trauma and gets ALS, there are thousands of people who suffer similar traumas that don't ever get ALS. At best, someone could attempt to make a case that head trauma might possibly increase your chances of developing ALS, but the data simply aren't there yet even to support that theory, much less designate head trauma officially as a cause of ALS.

Using that type of logic, you could make nearly anything a cause of ALS. I can guarantee you that a greater percentage of PALS have drunk carbonated beverages and have eaten potato chips than have had head trauma. Does that make Ruffles and Coke causes of ALS?

Quote:
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By studying the bodies of a few players after their death, the researchers determined the former players’ bodies contained high levels of two proteins known to cause motor neuron degeneration. They had never seen those proteins in other patients diagnosed with ALS, which lead them to believe football players who have suffered concussions and head blows are experiencing something similar to ALS that develops in a different way.
Do you have a link to any published papers about this? Or the names of the researchers who are making these claims? I'd be interested in seeing what proteins they are talking about, especially in light of the recent discoveries made at Northwestern.
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Old 09-15-2011, 04:58 PM #5 (permalink)
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Default Re: Speaking of head trauma

Allen... there was a story a few months back about the athlete/protein thing. When I get a chance, I'll see if I can dig it up.
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Old 09-15-2011, 05:52 PM #6 (permalink)
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Default Re: Speaking of head trauma

OK, the study was done by researchers at Boston University and published in the September, 2010 issue of the Journal of Neuropathology and Experimental Pathology. It is available free on their website. I seem to remember we discussed it at some length when it was first published.
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Old 09-15-2011, 07:14 PM #7 (permalink)
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Default Re: Speaking of head trauma

Quote:
Originally Posted by Katie C View Post
OK, the study was done by researchers at Boston University and published in the September, 2010 issue of the Journal of Neuropathology and Experimental Pathology. It is available free on their website. I seem to remember we discussed it at some length when it was first published.
Sorry, KatieC, but that paper does not support this statement that Daniel Hopper made.

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By studying the bodies of a few players after their death, the researchers determined the former players’ bodies contained high levels of two proteins known to cause motor neuron degeneration. They had never seen those proteins in other patients diagnosed with ALS, which lead them to believe football players who have suffered concussions and head blows are experiencing something similar to ALS that develops in a different way.
There are three proteins listed in that article: ubiquilin, TDP-43, and tau. As we know from the recent Northwestern study, abnormal ubiquilin is found in all types of ALS. TDP-43, likewise. And tau proteins, while not yet found in all forms of ALS/MND, are found in a not-insubstantial fraction of them, especially the Guamanian cluster cases.

There is no doubt that playing contact sports leads to the risk for head injury. There is also no doubt that some types of head injury cause similar effects that disorders such as ALS, Parkinson's, FTD, etc., also cause. "Similar" doesn't mean "same", however, and "possible" does not mean "inevitably" or "certainly".

And, to the original poster of the thread -- if you are concerned enough about your family's history of FALS that you would hold your children out of sports because of the risk of head injury that might lead to ALS later, then it's probably time for you to confront your own personal fear and determine whether or not you're a carrier or not. Then you'll be reasoning from a position of knowledge and not hiding from it. Hiding from it doesn't make it go away -- it simply allows fear, well-founded or not, to enslave you and and your loved ones.
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Old 09-16-2011, 02:54 PM #8 (permalink)
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Default Re: Speaking of head trauma

Gotta agree with Allen here. Can you find out for sure if you're a carrier? I'd hate to have my kids living in the shadow of fear needlessly. Personally, I don't think I'd shelter them too much--as it could potentially lead them to develop health anxiety.

There does seem to be some type of correlation of sports and ALS (can't remember the study I read) but certainly not all PALS are or ever were sports players, and not all had head trauma.

If I had boys, I'd probably be afraid to let them play football--but not for fear of ALS. I'd be more worried about other types if injuries that I've seen as an EMT at football games.

To be honest--contact sports scared me as a parent.

For me personally, if I had FALS in my family I'd drive myself insane if I didn't get checked.
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Old 09-16-2011, 04:08 PM #9 (permalink)
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Default Re: Speaking of head trauma

On one hand can you cushion them from all things that would/could cause head trama? No way! Bicycle, skate board, basketball, baseball, ect. ect. The equipment continues to improve, the rules continue to change to attempt to make it safer so if a child felt strongly about it I wouldn't hold them out. On the other hand, as a former football player my body is trashed both knees, one shoulder, and yes numerous concusions. However, I played till I was 27 and started in pee wee at 8 yrs old. I was also in a couple car wrecks and had head injuries from them so you cant protect them from everything. I'm no help. Sorry
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Old 09-16-2011, 04:51 PM #10 (permalink)
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Default Re: Speaking of head trauma

Nope I would let them play. You can be preventive in your life but there comes a point where it is no longer preventive but actually hurtful and inhibiting. For instance, my family has a Serious past of heart disease and breast cancer. There are preventive measures I take...ie. I don't eat tons of dairy and watch my soy and red meat intake. But do I stop them all because it could lead to it in the future? No. Take the proper percautions...get the latest helmets for football that actually help prevent concussions if you need to but don't stop your boys from having fun. They are only young once...let them enjoy this time they have now...there will come a time soon enough they will realize the past of the disease in your family and will be affected it. Plus kids are young and resilient. Even if they do get hurt they should bounce right back
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Old 09-17-2011, 07:52 AM #11 (permalink)
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Default Re: Speaking of head trauma

Well I asked from a stand point of discouraging football not holding them out of all sports. If they really wanted to play I wouldn't stop them. But here in Oklahoma kids start playing really early like 6 yrs I think? There are several other reasons not to let them play football so i'm merely suggesting i push other sports and discourage football not that I would put an all out ban on it. There are plenty of other non contact sports I can encourage. He played T ball at 3 yrs and now plays soccer at 4 yrs. He also runs and jumps and plays like a maniac to which I give no thought of head injury and ALS. So please don't misunderstand I'm not some nut who wants to go into overprotective mode because I'm definitely not.


I do however want to make responsible decisions and if we are already have risk there I don't want to add any unnecessary catalysts.

As for me worrying about getting it, I absolutely do all the time. I actually was very seriously considering getting tested, in fact I posted here a few months ago asking for feedback on pros and cons of it but got no replies

I had made my mind up I WAS getting tested but my sister convinced me not to when she shared her reason for not. Her view was if you test and you're not a carrier then that is the greatest news a person can get but if you are don't you think you'll be a mess? And she's right, if I do have the SOD1 mutation then every single muscle twitch or body fumble I’d be sick to my stomach thinking THIS IS IT!

Of course I'm half way there now. I've mentioned to other posters I'm probably going to be taking a very long break from here because coming here puts ALS at the forefront of my mind all the time. I visited here very regularly when my mom first passed for support and realized after a point it wasn't mentally healthy for me to dwell on ALS so much.

The only reason I came back was to ask the question and get feedback on whether I should just get tested. Which shows its on my mind whether I'm here or not but being her definitely exasperates it.

The problem with getting tested is that even if I have the SOD1 mutation, its not a 100% guarantee I will develop the symptoms of ALS. So its very possible I can get tested and STILL not really know. The only real good that could come is I may get the news I am not a carrier which quite honestly would be life changing for me. I really am scared to death it will strike me. I know everyone will say just go on with your life and enjoy it and I really do for the most part. I probably enjoy life more than most because I know it may be cut short and I watched my mom's life cut short so I have a good attitude I just can't shake the fear deep inside me that ALS is in my future.

Thanks everyone for replying.
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Old 09-17-2011, 01:21 PM #12 (permalink)
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Default Re: Speaking of head trauma

Any cancer or heart disease in your family? Do you worry about getting them? Do you worry about accidents every time you drive? Can you see where I'm going with this?

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Old 09-17-2011, 01:38 PM #13 (permalink)
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Default Re: Speaking of head trauma

HI

I can understand how you'd feel from both sides with FALS in your family. But, if you're worried about it to the extent that you think of it daily--then there is a chance you could put your mind totally at rest by being tested.

NOT being tested isn't letting you remain positive; it seems to be putting you in a sort of limbo land that hopefully you will avoid.

As it stands now; with a mom with FALS--aren't you going to panic at every twitch? I certainly would--unless I'd been tested and KNEW I was clear.

So if you think of it in this light--it could give you much peace of mind by getting tested--and 'knowing' may not make that much of a mental difference.

Fear of something is very often paralyzing. If you test positive; it's not a guarantee you'll get it--but on the chance you DON'T have the gene--your mind can be at peace.

I think I'd take the chance at the peace of mind, sweetie. You're worrying now not knowing--will you worry more if you find you have it?

If it wasn't the FALS version, I'd tend to agree with AL a little more. On this one--I think I'd want to know either way.

Does knowing if you have the gene affect your kids at all? Are they clear if you are? That's another consideration. Please PM if you ever want to chat and I'd be happy to send you my number. You're a sweetheart and deserve to live in some sense of peace.
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Old 09-17-2011, 01:38 PM #14 (permalink)
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Default Re: Speaking of head trauma

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Any cancer or heart disease in your family? Do you worry about getting them? Do you worry about accidents every time you drive? Can you see where I'm going with this?

AL.
Not to mention all the European soccer players that have been identified with ALS. There are more of them than there are either American or Canadian football players, I believe.
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Old 09-17-2011, 06:46 PM #15 (permalink)
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Default Re: Speaking of head trauma

Al,
I appreciate your point I really do, but I'm a numbers person. If auto accident rates were 1 in 2 yes I would worry. If I had a 50% chance of getting cancer, same deal yep I'd be darn worried.

notme, yes I do notice every twitch where I never did before my mom's diagnosis. Two years ago I panicked, today I notice and then quickly move on. If I am clear then my boys are clear. I need to weigh the pros and cons of getting tested some more. One of my greatest concerns is how it could affect my future in terms of health insurance. Also, life insurance, I want to get another policy in a couple years since I have only been able to find 20 year ones, I want to be sure I get one when I'm 38 which is 4 years away. I got one when I was 29, which takes me up to 49 but my kids will need one beyond that for last years of high school and college.

I'm just a planner to the extreme. I think and plan everything and always error on the side of preventative so I don't want to let my kids play a sport that would contribute to als and i don't want to get tested if it will mess up life insurance or health insurance coverage in the future. Lord knows if I test positive i'll need them both!

Are there any theories on the soccer players why they get it? It certainly does seem to strike active people!

Thanks everyone for the dialouge its nice to let some of this stuff out. While I may come off a bit nutty in these threads, outwardly to people who know me I'm completely sane, well close anyway

xoxoxoxo

Last edited by asantiago : 09-17-2011 at 06:55 PM
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