Bill's Journey to the Unknown

It's a funny thing to hope for a tumour... that's what I was doing during my brother's battery of tests to determine the nature of the degenerative disease that began affecting his left hand. It wasn't until he was finally diagnosed with ALS (Lou Gehrig's Disease), that I was able to reflect on the absurdity of what I was doing. Lesser of the evils I guess. Despite all that, the one thing that remained unwavering was my utmost love and respect for Bill as he calmly and bravely accepted the diagnosis along with the knowledge of what lie ahead. There are many sources of information regarding this affliction except of course the origin, how to treat it, cure it or manage it's progression in even the slightest way. However, I've included some links in the footer as a starting point for anyone who would like to find out more. I thought I might know what to say at this point... I imagined that I could convey to you the bond I have with my brother... maybe recall for you how dependant I became upon him when we were very young and separated from our parents; having to stay with relatives in the United States. I was so young that I became confused as to who my mother and father were. But I knew my brother... he always was and always will be my mentor and dearest friend. He recently told me that he felt like he failed at his life... his marriage... no kids... etc. I started to weep not because of his feelings of depression, which were absolutely understandable given his pronosis, but because I had failed to let him know how important he was to me. I had failed to express my sincere and utter gratitude for the millions of times he inspired and influenced me; for the myriad ways he demonstrated the importance of seeking constant improvement of oneself.  He has saved my life on more than one occasion.  I owe him everything.  I wish I could give him back even a fraction of what he's given me.  Unfortunately, all I can provide for him is a place to lay his head at night, some food in his belly and whatever companionship I may as he wrestles with the idea of when and how far he will allow his condition to pillage his body.  I wish I could point you to a promising treatment or assistive device that would make things so much easier... but the cold truth is that there is nothing.  He wants to use whatever funds are generated to help pay for his car (and yes, I told him to forget the car) and to allow him to see our family in Nova Scotia and fulfill our promise to bring our Mother's ashes back to her home there.  I guess I can understand the car thing... it's one of the few things that help him feel independant right now.   The selfish part of me wants to seek out experimental clinical trials... anything for that last bit of hope... but the little brother in me would just like to see him laugh and smile a few more times before it's time for him to leave.  

For those of you wishing more info:  I will add to this later but for now, you can find more information here:
https://www.als.ca/about-als/what-is-als/


 A word from Bill...

My name is Bill Rutherford.

I'm 51 years old and I'm dying of ALS (Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease) which has no known cause, cure or treatment.

You may know the disease from helping out with the "Ice Bucket Challenge" a few years ago.

I'm writing this after my wonderful brother convinced me its worth a shot after I suggested it.

I was diagnosed in August and had to leave my job as an I.T Manager in November 2016.

Things have gotten progressively worse since then.

At present, I've lost about 20 pounds, my left arm and hand is completely dead and wasting away and my now my right hand is almost gone too. Soon I won't be able to wash or dress or eat or do anything on my own (with things being extremely difficult even now).

Most likely, very soon, I won't be able to walk, I'll need a feeding tube, and I'll even lose my ability to speak.

Finally, I won't be able to breath on my own.

Unfortunately, after working most of my life and having no savings, I'm now trying to get by on a pathetic disability pension and its making my final days a living nightmare. I've already had to give up my own place (which I could no longer afford).

I could go into great detail on how living in virtual poverty is hastening my demise but I'm sure you folks can imagine how tough this is while simultaneously facing such a brutal prognosis.

I have no children, no girlfriend, few close friends, and I've been divorced since 2010 (after 20 years of marriage) so my brother Jim has selflessly taken on the burden of taking care of me and letting me live with him, his girlfriend Barb, and his awesome 12-year old son, Nick.

Barb and Jim both work hard but they struggle to make ends meet - especially with me in the picture.

All I'm looking for is some money to pay off my car (so I can leave it to my brother) and maybe take a trip to our boyhood home of Dartmouth, Nova Scotia to visit some relatives (who we haven't seen in many years). We'd also like to scatter my mum's ashes near where she grew up there (she died in December 2014). To be completely honest I'd love to maybe have a couple more fun days with a drink in my hand on a nice bar patio somewhere too :) I'm not worried about any special medical equipment or anything because I don't think Ill let myself get to the point where I need it.

Any assistance you can offer would be appreciated much more than you know and it would help a dying man renew his faith in the kindness of strangers - and in all of humanity in general :)

Thank you all so very much.

Remember to tell everyone you care about that you love them - everyday :)


Bill Rutherford