I am like Dr. Jekyll and Mr. Hyde when it comes to spending my time researching and then putting to use what I have learned from my research.  I run hot then cold would be another way to put it....

Sometimes, when I am feeling better....I just wish to put my medical issues in a shoe box and then place that shoe box on a shelf out of sight in the back of a closet...thinking that the BAD is just a nightmare that I am slowly waking up from that BAD and all will be BETTER....
that the disease will just disappear and go away....IF I hide it all away in the closet etc.

or, that maybe we live in dimensions of good/bad  and I just need to find the key to the good dimension and stay there and lock the door.....
and during those times, I avoid the research...

though
sometimes when I am feeling better....that is a good time to do a little more in depth research that I DO/WILL put to use in a timely fashion  with the realization that I am not having a BAD dream...that my life as I know it now IS reality and I must move forward with it in a POSITIVE manner not only for my benefit but also for the benefit of others near to me.....
AND
for people like you who, may share the disease of ALS <> or <> something similar..... 
and that you may share these same issues that I do....
that maybe,  you will be LOOKING at my posts and the info I have....
AND
that the way I put it forth to you helps you...

OR
helps others who are not themselves afflicted with actual disease BUT are affected by the disease either as a caregiver or medical professional, friend/relative etc.. 

and that THAT will be a positive for YOU....
and, thus in turn, that makes it more of a positive for me....
and keeps me motivated and in feeling that I have a reason for being...existing until the end whenever that is.
and, so I will CARRY ON!  :)

AND, the same goes for when I am feeling worse....having a BAD day be it physically, mentally (cognitively) or emotionally (being an EMO as my boys would say) or any combination of those things. 

On the BAD days, of course....I cannot HIDE from the disease as easily and be it out of fear....guilt....boredom etc.,  
there are moments I feel I must pursue the answers to the many questions of WHY....
to things that I am feeling 
as, it points to the fact that I cannot stop the ticking of the clock and that my time of doing my research will...
run out.
I do NOT want to have regrets later,   
when
I can still THINK...
about the research I should have done....while I was still able to do it!!

After-all, how difficult is it to sit here, and become 'one' with my laptop....sitting here in my recliner, tv w/ remote, pillows, snacks, phone, BiPap, nebulizer,  the pup-dogs, etc. in an air conditioned room...?!?

Granted, going back to do a lot of retyping of text due to the clumsiness of my hands and fingers these days...may seem annoying to me now (you would not know, as I feel it a necessity to correct the mistakes I am aware of...and I don't catch them all)
BUT,  I  could neither live nor die with that hanging over my head. ;)

I have written all of this ^^
in this post...
in relation to my research.

I collectively put together what I 'glean' from various websites and printed material I pick up when I am out and about as well as all the knowledge I gain from my contacts with the medical community at my appointments.
I mentally sort it and prioritize it.
I CAREFULLY look for  untruths and shams from person like the 'snake oil' salesmand as not to get caught up in them....
&
I will try to point them out to you when I come across them to protect you when you may be desperate for cures etc.   

THINGS and knowledge of those things that I feel is important or helpful, I will try to pass along as I have already been doing.

MY DISCLAIMOR:  Sources, when I can, I will give kudos to....BUT, that is not my priority to endorse people OR products...but rather to help others with the found info,,,,,and I think that would be a priority to those persons also.   My neglect of giving credits to sources is not intentional. 
As I pointed out, I tend to collectively combine info to put out to others.

and lastly....
I will share as best I can my own personal experiences.  Some things are quite personal...and possibly a little embarrassing (though, after having 3 kids and a few hospital stays in my life...I should be  beyond the embarrassment at this point)  and some a little more difficult to come to terms with and thus, it will take a lot of thought on my part as to what I can share and how I will share certain things.  

So, this brings me to the end of this post................
finally <> you say.

I HOPE that what I post on my blog  ALS/JournalLKC and elsewhere, is helpful to you and your plight.

It is certainly a therapeutic outlet for me.   
:)

THANK YOU   for letting me imbibe.

Lindsey