PatientsLikeMe ™

"This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being a force of nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy.

I am of the opinion that my life belongs to the whole community, and as long as I live it is my privilege to do for it whatever I can.

I want to be thoroughly used up when I die, for the harder I work the more I live. I rejoice in life for its own sake. Life is no "brief candle" for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations."

                      ~George Bernard Shaw~

Me when Healthy 2002

          Tracy & I in Bermuda.
~Don't want to close my eyes ~ Don't want to fall asleep ~ Cause I will miss you baby & I don't wanna miss a thing ~ Cause when I dream of you the sweetest dream would never do ~  I'd still miss you baby & I don't wanna miss a thing ~
~~~I JUST WANT TO STAY WITH YOU IN THIS MOMENT FOREVER~~~
Aerosmith - I Don't Wanna Miss a Thing
http://www.youtube.com/watch?v=Vo_0UXRY_rY
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Rosa & Ethan 2008
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Wichita Man Creates Out of This World Tribute
No one would normally think to wear a mouse on their head. Normal attire might include a hat or a scarf. For Jeff Hallowell, however, wearing a mouse on his head is his way of communicating with the world.  Jeff was diagnosed with ALS in August of 2003. Jeff has lost his ability to speak and the majority of the movement in his hands. So, the only way he can communicate with people is through the computer. Since he has very little use of his hands for typing, he relies on the head mouse.
However, Jeff doesn't focus on the fact that he has Lou Gehrig's disease, or that he has lost much of his mobility and has to rely on a head mouse to communicate. Jeff is spending time with his family, his son in particular. In May of 2005 Jeff took his three year old son, Ethan, to Cape Canaveral. They both share a love of space and the moon.
Jeff wanted to create a memory that his son will always have.  He has also come up with a very unique way for his son to remember him after he is gone. In a recent e-mail from Jeff he said, through the help of a company named Celestis "I have chosen to have a lock of hair from both Ethan and I placed into orbit around the moon or on the surface of the moon. So wherever and whenever Ethan wants to think of me he can just gaze up at the moon and we can visit in spirit. This is much better then being in a cemetery."
Jeff and his family are thankful for everyday they have together. When their time together is up, Jeff will have left a lasting gift for his son, when Ethan looks up at the moon he will think of his father, and know he is with him.

                   Mariner's Cross

NURSING & CAREGIVER's
Cristyn RN & Director of Nursing at St. Raphael

Vanessa, my live-in RN

Vanessa - Cristyn & Holli

Shandria, my every other weekend caregiver

Angelo, 3rd shift, sleep cycle & every other weekend caregiver

The Cabin

Angelo

Ethan & I at the cabin

Lou Gehrig's Speech
http://www.youtube.com/watch?v=a4msaZTJrTA&feature=related

TOYOTA NASCAR: LOU GEHRIG'S DISEASE aka ALS!  WE WON!!
http://www.youtube.com/watch?v=jeopRPSl3Vk

http://www.toyotaracing.com/motorsports/video.html#dec-20-2010