Monday, April 29, 2013


I have completed an Advanced Directive; a legal document that outlines my wishes should I reach a certain, critical medical state.

I have completed my Will, documenting how all my various legal obligations should be handled.

Did I mention my expensive toilet seat?

I have had conversations about my life choices as ALS progresses. My favorite discussion sought to answer the question, "What is my ' Quality of life' threshold?"

I have modified my home to better cope with my functional needs as ALS progresses.

I fell over twice in 1 night last week.

I have ordered a comfy chair that also helps me to stand up. Yes, it's basically an ejector seat.

I'll need to find tennis balls to put on the legs of the walking frame I've ordered.

I ordered a wheelchair. A travel chair for when I feel tired on the road, and need to take a load off .

My wife has been forced to learn a lifetime's worth information on the subject of disability benefits, insurance, and the law regarding health care. In addition, she has been forced to learn every aspect of my daily routine...from how I like my food cut up, to how tight I like my socks pulled up.

Yet I feel full of love, laughter, and happiness for a ridiculous amount of the time.

I wish I could tell you that every day is free of tears and pain, but I can't...

I read a statistic that I'd never seen before: 50% of ALS patients die within 14 months of diagnosis.

My favorite nugget of information that I learned recently is, aside from 2 genetic tests, the only definitive test for ALS is conducted during an autopsy. I've heard rumors of new tests, but nothing definitive.

The toilet seat will clean my rear end for me. 

I believe I'll be happy as long as I'm able to watch my girls grow up, hear their laughter, and do something to help wipe away their tears.

Still, there are many more things that are many more times as important as planning the end of your life : Amanda must completely understand the offside rule, and comprehend aggregate scoring.


  1. I think of you and Amanda so often. I am amazed at your ability to put thoughts to words.
    Love, Steph

  2. Tony, we'll take care of the offside rule, aggregate scoring, and away goals (the easy stuff), just wish there was more we could do for everything else. Rick

  3. Nobody on earth understands the offside rule!

  4. It is a hard reality Tony. I'm going through the same. Be careful with that seat ejector. When I used a walker I was surprised to learn they sold the tennis balls. Why not make their on balls with their logo? I always figured people just bought tennis balls and made it up before I had to order from invacare. I want one of those toilet seats eventually!

  5. you are a strong man Tony. the body is only one tool life has to offer. you however are using all your tools God has given you. you see things others pass by, you hear things people don't want to hear or believe, you give love when love is all you can give. i believe the best is you have life and with it you give LOVE. thanks.

  6. Tony, you made me laugh and really think about your life all at the same time.