You can reach the world...
With speech,
SMS text and email

Freedom and
dignity of speech

Home
 

Up JayBee and M.E. A letter to ALS

A Letter to ALS (MND)

Dear ALS,   

    As I sit here and ponder the future and what it has in store for me, I can't seem to quit thinking and asking how I got here. So many questions with so little answers. Why is everyone's progression so different? Why one day I can eat and other days I can't?  Why do you steal my voice but not my thoughts? Sometimes I think not remembering the daily hell would be better.  The not being able to talk without someone saying "what?" Or better yet not even being able to scratch ANYTHING because you have paralyzed my fingers, hands, arms, legs, feet, and toes. I mean did you intend on me being 100% dependent on someone to feed me, bath me, groom me, dress me, transport me, oh and god forbid go to the bathroom?  You couldn't of left me 1 of those? REALLY? Why so cruel? On top of that you haven't given us inclination of any type of cure or relief? 5,000 people a day are diagnosed each year with MS and ALS.  There are 600,000 people living with MS and only 30,000 people are living with ALS.  The difference: 7 treatments are available for MS and only 1 for ALS. And the 1 doesn't even work on the majority of people diagnosed.

 But wait I need to retrace and go back to the things you haven't stolen. Like my mind, my heart, and my spirit. Maybe remembering the daily hell helps me, helps me concentrate more, love more, and hope more. HOPE, wow that is a powerful word. What's wrong ALS? Does that word scare you? Does it weaken you? I think it does. I believe that your foundation shakes and quivers as the hope courses through my veins.

 My competitive juices are raging. C'mon, bring it! Is that all you got? C'MON DAMN IT. THIS IS MY HOUSE. NO ONE AND I MEAN NO ONE COMES IN MY HOUSE AND PUSHES ME AROUND. I have HOPE in my corner  and he is the best in the business. So ALS back off!!! As long as I can take a breath, I will have HOPE. “Dum spiro, spero (Latin), "While I breath, I hope"”

Sincerely,

Tim Bargar 

ALS Survivor and Warrior 

P.S. All of my friends and family have HOPE with me.

Dear friends, I am not able to use a keyboard. In order to type I use an on-screen keyboard. You move the mouse and click on one character at a time. Took me 3 hours to do this. May is ALS awareness month so please re-post this  for me. Thank you, Tim Bargar

 
 

Tel: +44(0) 1462 623625* www.jaybee.org.uk
email Enquiries@JayBee.org.uk