where are the warriors?

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pearshoot

Senior member
Joined
Feb 6, 2011
Messages
636
Reason
PALS
Diagnosis
02/2010
Country
US
State
mo
City
nixa
know this site is a place place to vent but after reading several pages of entries i find it surprising so little is posted from the positive side. i am sure there are some out there
doing things the believe is slowing the progression of als. know we can't stop or reverse
this terrible monster but can we slow it? where are the warriors? local pals asked me
how can you maintain positve mental attitude after reading several posting and was not
interested in logging on. is there a thread of positive listing?
 
Im sort of suprised to read this, as i see all sorts of positivity on this forum, every single day.
Where are the warriors? Well, we are all over the place. We are all warriors- we battle in our own ways.
Im sorry if you havent been getting the support you are looking for. Is there anything that I could do to help?
 
the fact that were are all posting here and talking about how we over come the everyday strugles we face is what has helped me the most . educating ones self i feel is so important when it comes to this disease. hearing how other pals have problem solved a hurdle i've not yet reached is a big load off my mind and releaves some stress. warriors are all pals and cals that post here just because we all lose someting daily and still have the courage and will to post.
 
posted this not to offend but find postings that were positive thank you all for directing me to threads of hope
 
Perhaps you are missing the warrior spirit displayed here each day.

Many of our fellow PALS have to type their posts with one finger; some with eye recognition software. Many cannot raise themselves....they have fully functional and sensitive minds, but their bodies do not respond. And still they come here to offer solice to others and share their presence.

These are persons with a warrior spirit.
 
Pearshoot. You want a warrior..... You are a warrior. You sound like you have amazing strength. Feel free to Come for tea Its an off topic thread just for friends to have a natter. No medical talk aloud (although its always me that breaks that rule) :)
 
where are the warriors was a very poor choice of words i am very sorry i know all pals
and cals are warriors everyday to battle this monster what can i do to make amends
thanks joel for dirrecting me to yor site
 
https://www.alsforums.com/forum/members/1027-albums.html

My husband doesn't "do" forums, but you can see him in the link above! As you can see, he has engaged this opponent called ALS for a while now.

And if you really want to see an example of a pALS with the fighting spirit, look this guy up:

https://www.alsforums.com/forum/sto...-amyotrophic-lateral-sclerosis-residence.html

Oh - take a look here at these inspirational threads by Roderick:

https://www.alsforums.com/forum/search/result-1111004/

We are not all gloom and doom, but just as in real life, stuff happens! ;-) I think most of us here try to maintain our sense of humor for the most part. You just have to keep reading!
 
You don't have to make amends. There is not one of us writing on this forum who has not at some stage, " put their foot in it" . Least of all me. :)
 
I hope that each time you read one of my posts, you don't see doom and gloom. I have related how happy my PALS and I are, how we keep on going as much as possible, and what a great attitude he has... and me too. I try to take everything in stride... and have even told how I snuggle up to the Bipap and claim to love it, as it does its job well. I am thankful for every bit of advice, every help, every friend, and every hope for slow progression. I see my PALS change every few days or weeks now, but we intend to help him and others as well as encourage. I am sorry if we have related things negatively. I think it was exactly opposite. There is no good side of ALS except that it makes you count your blessings where you find them. I hope no one comes here to be titilated, entertained, or fooled. It's the real thing here.... real disease and real people......... real love and caring.
 
pearshoot,

You're right in my backyard!

A couple of neurologists have concluded I must have PLS (presumptive at this stage). I feel pretty crappy on a daily basis and have been feeling worse these past few weeks but I'm going to blame that on upping the dose of baclofen and gabapentin.

Anyway, I get up every morning and plow through the workday, smiling with added pleasantries to each of my clients. I fight this creeping crud with the mindset that it won't stop me.

Visit my forum pub. We serve alcoholic and non-alcoholic beverages of all sorts and the jukebox is always playing something you like! Oh, the pub! I forgot to tell you it's where we warriors meet to have a good time!
 
We can all be tougher warriors by enrolling in a clinical trial. Take our fight to the disease. Clinical trials always struggle to get enough PALS to enroll. Trials stretch out for far too long, trying to pull in the required number of participants. I realize part of the problem is access to trial sites within a reasonable distance of travel. But that can't explain why the Ceftriaxone trial has been underway for at least 16 months, and still hasn't signed on the 600 PALS needed to provide a statistically defensible verdict on whether the drug works or not.

Folks are disinclined to participate becuse there is a chance they may get a placebo. By not participating, they're 100% certain they won't get the placebo. It makes better sense to me to enroll in a trial, and bet on the 50% to 66% chance that I'm getting a drug that might actually slow my disease progression. If I get the placebo, at least it helped the research.
 
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