picking at your brains!

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slopokahontas

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Dangerous Waters

Found this very interesting! Since I've realized my Dr. isn't very hopeful and I'm not one to just give in, I'm a fixer, I will fight for myself and others. Since so many vets and football and soccer players have gotten ALS I want to know what I have in common with them. A well a the clusters of people diagnosed. It has to come down to toxins! I myself visit lakes all the time and I also drank from well water for many years. Anyone else have input?
 

GilWest

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Yes, I have some advice. Don't spend the time you have left trying to make more time. I have issue with blaming every illness on these mysterious "toxins". Enjoy every day and take this disease as it comes.
 

dalvin

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I don't try to figure out the causes or connections. I don't bother looking for the fixes out there either. I figure just dealing with the day to day issues, keeping myself safe and trying to keep a positive outlook is more than enough work. When just going to the bathroom is a major undertaking, I don't have time or energy for the what ifs
 

Nikki J

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My neurologist always says ALS is in fact a cluster of diseases with different causes. My ALS is different than yours and may have a different answer. ( that is certainly true for me as FALS with an identified gene defect but is probably true of SALS people too). You sound like you might be interested in trying supplements browse the forum if so especially the research and clinical study subforums and use search.
I think trying to understand and find a cause is a really common initial reaction. Unfortunately it usually does not go anywhere. It is your choice of course but figuring out if you want to try anything beyond riluzole and any clinical study you can access implementing that and then living your life might be less frustrating
 

MaxEidswick

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>Enjoy every day and take this disease as it comes

Ditto that!
 

krnNdug

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I understand your feeling that way slopo, especially as newly diagnosed. I am totally enjoying my time and doing what my wants me to do. I think it is more a benefit for her than me...I would never have gone to a natural-path, but she wants me to so I do, and it makes her feel like she is helping and value her ideas(which I do anyway). We know it is terminal, but everyone is. It is only a matter of time.

Good luck. If you feel like searching I think that is great. It is a positive thing for YOU!
 

Atsugi

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I'm all in favor of doing whatever makes you happy. Perhaps you could share your research or even write something for the world to read.
 

ECpara

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I thought the train of thought on the high incidence of ALS among football players, soccer players, boxers and wrestlers was brain injury. My husband participated in all but soccer. He can remember getting his noggin knocked around a bit. Just more food for thought.
 

nebrhahe53

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I think Nikki is right. Just like the so called war on cancer turned out to be a war on thousands of different diseases, so to will the war on ALS, if ever there is enough interest to even call it a war.
Its like your car stopping running and saying your car has car disease-yes but what in the car isnt working. Probably whats not working for you is not what is not working for the next person.
 

slopokahontas

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I was adopted so I'm not sure if mine is hereditary or not. I am definitely in to more natural remedies even if they just help with the symptoms. I will be getting my medical marijuana card next week. I plan to enjoy life as fast as I can or as slow as needed. I might still be in denial stage. It's always been against my nature to just accept being told there is nothing I can do. I have to at least show my kids I tried to be here for them. HIV was incurable too. Now, people are living with it. Thank you all for your input!
 

SMP51

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I hope with doing the medical marijuana you have plans other than smoking it. ALS will eventually inhibit lung capacity so you want to keep those as healthy as you can
 

Barbie

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You seem very interested in the reasons behind ALS and alternative cures/treatments and I think that is important to all pals in the future. Good for you--you should definitely talk to your clinic about drug trials. But do enjoy the time you have as well and be careful of charlatons and scams that promise complete cure or reversal. read ALSuntangled.
 

Music67

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I was at my local ALS weekly meeting when I was told last Thurs. by a recent widow of an ALS victim that the one thing that all veterans (who have a 60% greater chance of being exposed) have in common were their massive numbers of shots consumed. I was also told by the local Paralyzed Veterans Of America rep that the common factor was the stress & physical requirements of the military. A lot of theories out there.
 

MaxEidswick

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I have heard the stress theories. in 'nam it was mostly sittin' on our butts, don't remember the shots except boot camp.
 

slopokahontas

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Is it all military or ones that have been in war zones that are diagnosed mostly?
 
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