My Wife Joanne Has ALS, Lou Gehrig's Disease

Today I'm going to share a personal struggle with you. This is news I've largely kept to a small circle of close friends over the past few years and is difficult to talk about. The time has now come to enlist the support of a wider community, and perhaps together, we can make a difference.

Running this site and publishing commentary as frequently as I do demands a tremendous amount of my attention. However, my blog is not the #1 focus of my life. That would be my wife, Joanne.

Joanne has ALS, more commonly known as Lou Gehrig's disease. More specifically, she has Progressive Bulbar Palsy a particularly aggressive form of the disease.

Joanne's father and grandfather both died of ALS, although the general claim is ALS is not hereditary.

ALS is painless, non-contagious, and extremely cruel. The cause of ALS is unknown, but motor functions of the central nervous system cease to function although the mind remains fully aware to the end.

The symptoms in the above link are what we are going through now. For a year she has been on a feeding tube, unable to eat or drink anything, including water. She now struggles walking.

Joanne is the love of my life. We have been married 27 years. In the past two years ALS has taken away most of the things Joanne loves including golf, kayaking, walking, biking, and dining out.

Joanne has lots of support from her friends. One of her best friends, Kathy, stays with us 4 days a week to help take care of Joanne.

There is another love in Joanne's life and that is our dog Raleigh, a MiKi. He is tiny, weighing in at about 8 pounds. We got Raleigh shortly before Joanne's diagnosis. However, we both already knew the score.

I found Raleigh online, from a breeder located in Virginia. The breeder's kids were studying state capitals and Raleigh was named after the State Capital of North Carolina.

The one thing ALS can never take away from Joanne is her spirit and sense of humor.

Joanne's laughter is not quite the same now as she cannot manage to say even a single word. Sounds like laughing, crying, and pain are primarily recognizable by pitch. Nonetheless, when Joanne laughs, she still lights up a room, and that will never change.

Communication

For now, Joanne communicates on a Boogie Board Writing Tablet and also with "Proloquo2Go" a very nice text-to-voice application on her IPad.

Her writing ability is on the downside and we are now investigating eye communication devices that can detect words she is looking at.

Raffle in Support of ALS

I am sponsoring a raffle for the benefit of ALS research. 50% of the proceeds of the raffle will go to the Les Turner Foundation, with the money specifically earmarked for ALS research.

The other 50% will go to raffle winners.

My goal is to sell 30,000 tickets at $200 each. If we can sell that number of tickets, $3 million will go to ALS research and $3 million to raffle winners in the following breakdown (assuming all the tickets are sold, otherwise on a similar percentage basis).

1st Prize $1 Million
2nd Prize $600,000
3rd Prize $300,000
4th Prize $300,000
5th Prize $300,000
6th Prize $100,000
7th Prize $100,000
8th Prize $100,000
9th Prize $100,000
10th Prize $100,000

If all tickets are sold, 1 in 3,000 will win a minimum of $100,000, and the lottery winner will receive $1.0 million.

You cannot beat these odds in any lottery anywhere.

Buy Lottery Tickets Today!

Please Support ALS Research.
Click here to Buy Lottery Tickets today!

Note: In addition to buying lottery tickets, you can also click on the above link to make a donation of any size. Every bit helps!

Corporate Sponsors Needed

We also seek corporate sponsorship for $10,000 a link, with 100% of the money going to the Les Turner Foundation. Corporate sponsors will receive a permanent link (for the 6 month life of the raffle), from the ALS raffle page to a website page of their choosing. Ads must be tasteful.

Please Email Mike "Mish" Shedlock to discuss corporate sponsorship.

This is a good opportunity for sponsors to reach new audiences for minimal advertising dollars, while helping a very worthy cause.

Thanks for your help and understanding.

Mike "Mish" Shedlock