Status
Not open for further replies.

Howdy

Active member
Joined
Jun 22, 2006
Messages
65
Reason
PALS
Country
US
State
In
City
Bloomfield
This survey is a series of questions about your lifestyle prior to diagnosis? There are 86 questions that will take approx. 20 minutes to complete. I am hoping the answers from everyone will show a pattern that leads to the cause of ALS, PLS or PMA. Your answers are confidential and the final report is by aggregrate totals. No personal contact information is asked. If any questions, please PM me. Thanks, Howdy.

**survey link expired**
 
Last edited by a moderator:
Re: Als survey

So who is doing this survey and who is using the answers? Is anyone (Howdy) getting paid to put this here? I won't do it till a few questions are answered.

AL.
 
AL,
I'm doing this on my own to see if there may be something that has caused our ALS. I will post the results here when the survey is done. I'm just tired of reading of all the people that are dying from ALS. I've had ALS for 11 years now and it just does not look like the researchers are any closer now then they were 11 years ago. I have been a member of this forum since 2006. There is no way I can tell who answers what to this survey. This will only give the total count of each question that is being ask. Al if you have any other questions please PM me . Howdy
 
There are simply not enough people on this forum - even if everyone participated - for there to be any kind of statistical validity to your "survey". Perhaps your time could be better used participating in the national registry and encouraging others to. Even if I have person issues with the structure, it's still the best tool out there at the moment.
 
Sorry Howdy no offense intended, just making sure everything stays above board here. Have to keep our reputation as an honest forum.

AL.
 
ok, so I took the survey, and think a couple of the questions about workplace leave out a lot of potential environmental factors... for instance, working at a newspaper, worked with a lot of photo and other chemicals... working at a computer company, in front of the old CRT monitors... not to mention the awful smelling new rugs they put in their buildings. Also, phrasing things as what is your "favorite" fruit or vegetable, doesn't necessarily mean that it was the one you ate the most of. And as we all know, the "onset" for most of us was probably well before we ended up noticing that anything in particular was wrong. For instance, I had ankle sprains/loose ligaments in my left ankle for nearly 17 years before I noticed I was tripping on things with it. And still didn't think too much of it, as it had been a problem for so long.

I hope you get some insight, keep us posted!
 
I took the survey. Hope my input helps.
 
when do expect to be done with the results?,just wondering
 
Testingbbbbbbbb
 
Testing testing testing
 
Howdy, there is absolutely no way that this survey will tell you anything at all, but it's probably an interesting thing for you to do for a bit of fun. Just please don't think there will be any usable data coming from it at all. If only it was that easy:)
 
I did the survey and there a few questions that if everyone answered yes to, it might make you think something was up.

AL.
 
Katie C, I encourage every PALS to sign up on the National ALS Registry I did. I just think that more question need to be answered about ALS. Helen I agree with you there are many more question that can be and should be ask. Al, I've not found any 100% yes's but I have found some that are in the 88% to 92% Range that need to be looked at. Alyoop, You may be right but I'm not doing this for fun I'm just sick of all the PALS that are dying from ALS. I'm the only one in my support group that is still alive or able to attend meetings after 5 years. I believe that the more questions that we get answers to will help the Researchers to put this puzzle together. Just need more of you to fill out the Survey.
 
Just need a few more to fill out the Survey.
 
Love your idea, Howdy. One problem is that there could be many different and unrelated environmental triggers that might start the horrible cascade of neuromuscular breakdown we know as ALS. Also, familial ALS is probably very different from sporadic. That's why HUGE numbers of PALS are needed for these kinds of studies. However, if you do see a trend, it would be interesting - and you might try to bring it up to the folks anaylizing data at the National Registry. .
 
Status
Not open for further replies.
Back
Top