What it's like to have "My Challenge"

I HAVE BEEN A LOT OF THE SAME QUESTION-HOW IS IT TO LIVE W/ ALS? I ANSWERED THIS AWHILE BACK BUT SINCE AMENDED IT. SO HERE IT GOES..........


I thought long and hard on this one and I have so many scenarios and pictures I want to paint for you. But I was driving yesterday and it came to me. I was thinking maybe I would write an analogy but that wouldn't give you an accurate gage on how you live with it(my challenge) step by step or breathe by breathe. So I came up with this:

It's like falling into quicksand! At first you know that there is a possibility that quicksand exists. And then you happen upon it by total osmosis. Not ever understanding how you got there or why. Your angry because it's blocking your ability to move forward and your scared because you know deep down what lies ahead. But you also have to try and get to the other side because it's what you always do-take a challenge head on. So you put on this brave face and keep walking forward knowing full well your in uncharted territory. You have no choice. So you take that first step and everything changes-life-love-outlook on life-your mental state-your physical state-relationships-that look in people's eyes when they see you for the first time-emails mean something different-questions you had answered before are now open ended-EVERYthing changes!
And as you take that first step you start to wonder why, how and oh shit! I'm going to die from probably the worst disease on the planet. As you sink deeper, things physically start to go one by one. -speech-hands-arm-leg and as you try and fight you know-you just know- to keep fighting till the fighting is done. As you lose your ability to articulate and tie your shoes and your balance goes and your ability to run, you say inside--don't give up trying. But your brain is clear and unaffected so when you want to do something physical your brain knows what to do and sends the signal to say your hands and there's no one home. THAT'S FRUSTRATING! And that's hard for me to accept(I haven't yet) because I try till I get it-yesterday it took me nine tries to button my pants----- so I am fighting! And when I was healthy I could do anything and everything! Articulating is what I miss most-I'm a guy that loves the ball in a tight situation-I lived for that scenario-I WAS IN SALES FOR A REASON-I AM A CLOSER-so when I'm sitting there wanting to do more and I can't-that doesn't sit well w/ me-so I try to speak or fall or say something that no one understands because it's built into my brain-to try at all costs! Plain and simple, I'm not giving in to this fucking disease-no way!!

Mentally I am great-there is no doubt in my mind that I will win-I don't know what that means(winning). If that means beating my challenge then I will and if that means staying alive a few more years than they(doctors) gave me(2 YEARS) then that's a victory also. HEY, I'M A SMART GUY-I KNOW THE ODDS ARE HEAVILY NOT IN MY FAVOR-LAST TIME I CHECKED NO ONE THAT HAS ALS, SURVIVES. AND IF THEY HAVE (LIKE ERIC AND STEPHEN H. AND OTHERS-THAT'S NOT LIVING TO ME-I'D RATHER BE IN HEAVEN AT THAT POINT. Only time will tell but until then I'm coming out WITH MY HEAD HELD HIGH AND FIGHTING! THAT'S ALL I KNOW HOW TO DO.


Hope that answers the question. That is the best I can describe it!!!!!!!!!!!

Keep in touch,
Keep smiling,
L,
Drew
There is no impossibility to him who stands prepared to conquer every hazard.
The fearful are the failing

Thought

I got this from a friend at the company that provides the stemcells. I concur with this!


"The most wasted of all days is that during which one has not laughed." -- Nicolas De Chamfort

Still working on that answer

Hey All,
I hope all is well.
I have been so busy-I have a standing 5 doctors appointments a week. So forgive me. I am doing well. Will answer in a few days.

Best,
Drew
"mind over matter-if it doesn't mind it doesn't matter"

Hope is a good thing-maybe the best of things!

This came from someone I know in China!

In our view: Hope where none existed
http://www.joplinglobe.com/editorial/local_story_248004049.html?keyword=topstory
— Need evidence that stem-cell research can produce miraculous results?Six-year-old Rylea Barlett, of Webb City, was born blind, with no hope of ever seeing. But her mother refused to give up, taking her to various specialists in the United States before finally trying stem-cell transplants from umbilical cords at a hospital in Hangzhou, China. After three spinal stem-cell transplants and two IV transplants, Rylea reacts to light, has seen the faces of her mother, brother and sister, and was able to detect a big “E” on the chart across the room in the office of Dr. Larry Brothers, her Joplin optometrist.Her vision is only 20/400. But that may be only the beginning. Rylea is supposed to return to Hangzhou for further stem-cell transplants in March. Although she may never see perfectly, as her mother, Dawn Barlett, said: “You continue to build on what you have gained.”Rylea’s experience offers hope to others who have been blind from birth or perhaps even were blinded in an accident or by a disease. The use of stem cells from umbilical cords has generated new optical nerve cells that allow Rylea to see.A man in Sikeston had stem-cell transplants in the Chinese hospital with the hope of repairing a spinal-cord injury that left him paralyzed from the waist down. He still can’t walk, but he is able to move his toes. No one can guarantee that stem-cell transplants, including the somatic cell nuclear transplants approved for research in Missouri by voters last year, will come up with cures or even ameliorate the ravages of debilitating disease or injury. But the research offers hope where little or none exists. Opponents of stem-cell research argue that the somatic cell nuclear transfer procedure amounts to cloning, despite the language in the amendment written into Missouri’s Constitution last year prohibiting human procreation by cloning, and want to put a stop to it through a grass-roots initiative petition campaign.The research in Missouri already is being hampered by an unstable climate being created by those who are continuing the efforts to overturn or thwart the purpose of the constitutional amendment. Plans for expanding this vital research reportedly have slowed. That is a shame. We don’t fault those who follow their consciences, but we think that they are caught in between rapid advances in medical science that have outpaced medical ethics and public understanding. Rylea is dramatic proof that research into the use of stem cells from the umbilical cord can work. That same hope exists for sufferers of other life-threatening, quality-of-life-dampening injuries and diseases. Their best hope is somatic cell nuclear transfer research here in Missouri, not in a faraway land or city like Hangzhou, China.
Copyright © 1999-2006 cnhi, inc.

Still searching for the right words

Hey All,

It is now 7 days (I think) since I was going to explain how "living with my challenge" affects me on a daily basis! Well, I am trying to find the correct analogy. But I am finding this assignment quite difficult-because it changes daily. And then I think long and hard and I get upset, mad and emotional. I never thought in a million years I would have to answer that question but I do and I will--provide an answer because it is there somewhere in the abyss(that is called my brain).

As for me-Positive as I have ever been. You know I have come to accept who I am today emotionally(my relationships and my state of mind are far better than I could have ever imagined) but not physically-yet. And with that said , Give me a few days to paint a work of art for you on how my challenge affects me on a daily basis!!

A question to a certain someone: Where have you gone KMR?

Smile at someone today!

L,
D