Thursday 21 August 2014

Of buckets o' research

It's been a loooong time since I've used this blog, but since I can't fit everything I want to say into one tweet (or even facebook post!) I thought this would be a good medium to share my story. Or rather share Ed's story, I suppose.

Ed is my brother-in-law. We met when I was 18 years old and had just started dating Mr. Light, who is one of 5 children. I probably shouldn't say this lest my in laws find this blog, lol, but Ed and his wife have always been my favorite of Mr. Light's siblings.

Ed and his wife met in the 9th grade. He met her the first day of school and told all his friends that he was gonna marry that girl one day. They went out for a few weeks... at which point her Mom told her she was too young to be in a serious relationship and forbade her from seriously dating anyone until college. Ed refused to go on a single date with anyone else, even when she went out with other guys in their grade... even when they made fun of him for it. In 12th grade, his wife told her Mom she wasn't waiting any longer and that she was only ever REALLY interested in Ed. They started dating again even though she wasn't supposed to yet and married a few years later.

After high school Ed took an apprenticeship and went to work as a stonemason. He was extremely proud of his work... and his STRENGTH. I've never met another man (not even Mr, Light... sorry  honey) who could toss a bag of rocks over his shoulder and carry it around all day like it was nothing. Of course, Ed did like to show it off a little too, lol.

If you can't tell, Ed was a guy's guy. He was into restoring old muscle cars, home renovations, jet-skiing, and sports. A few years after they got married, he and his wife had two baby boys. They are now 11 and 13 and share their Dad's passion for football and cars. And GOSH are they strong (I wouldn't dare mess with them)!

A few years ago, Ed and his wife bought their dream home; an old century home in a small town in the country, right by a little lake. It was a wreck, but they were both handy and knew they could restore it. It took them three years of working every night, but they finally got it done; Ed took every chance he could to teach the boys how to use power tools, how to make sure something was structurally sound, how to hang drywall, how to know when their Mom had her mind set on a particular paint colour and wouldn't change her mind. ;) After the house was done, he started taking them into the garage with him and teaching them how to work on old cars.

Late in 2011, as winter was starting, Ed started having problems at work. He was having issues carting his work around with him. This wasn't a problem for his company; most of the other guys at the shop needed other workers to carry around the product anyway. But it annoyed Ed that he had to let someone else do part of what he considered HIS job. Soon afterwards, his work started suffering. His hands would cramp up, and he had problems holding his tools without shaking. They thought perhaps he was finally going to need carpal tunnel surgery, like most people in his profession eventually end up getting. But when he went to the doctor to get the diagnosis, they found no evidence of carpal tunnel. Take your vitamins, eat more veggies, they told him. You're older than you were when you started this job, take it easy on yourself.

A few weeks later he couldn't work at all anymore. Not only was his hand shaking, but he couldn't hold his tools at all, and his arms felt like they were going numb. He went back to the doctor, who agreed this problem was bigger than they original thought and ordered more tests.

They ran many different tests, and many of those tests they did multiple times. At first they told him they suspected Lyme disease. As a matter of fact, they suspected it so strongly that they didn't believe the first few negative tests and ordered them done over. Then they told him he had Multiple Sclerosis. After several months of believeing this diagnosis, the symptoms progressed further and began to be mis-aligned with MS. They re-tested him over several more months and eventually decided to rule out multiple sclerosis, along with a host of other possible diseases. The only thing that fit was ALS. From the onset of symptoms to official diagnosis was over a year.

THERE IS NO TEST TO DEFINITIVELY DIAGNOSIS ALS. It's diagnosed by analyzing symptoms and then slowly and carefully ruling out every other disease under the sun. If a patient is mis-diagnosed, some of the treatments for those diseases can actually speed up the progress of ALS.

By the time of his diagnosis, Ed was in a wheelchair. Not one to let the disease show him up, he and his wife tricked out his wheelchair to make it do crazy spins, wheelies, have a cupholder and even a heated seat! That chair became a bit of a symbol for them, I think. Yes, the disease was taking bits and pieces of him away, but he was still ED no matter what it did to him.

One day, Ed was doing  a wheelie in the kitchen. His chair tipped backward and he fell over. His vocal chords had already degenerated enough that no one could hear him calling for help. He was unable to move enough to get himself up off the ground. He wasn't able to get himself to the bathroom when he needed to use it (nor was he able to control that much anymore anyway). He lay there for about two hours before his boys came home from school and found him like that.

When you talk to his wife now, she says that was the day everything changed for him. That was the day he stopped feeling like he was still Ed.

Over the next few months, all Ed could really do any more was talk, and even that was barely possible. He used his energy to help plan a month-long trip to Italy for his wife and sons, for "when they finally were free to go."

Eventually he could no longer speak, or move. He was confined to bed and was in pain all the time. Thankfully (though it's an odd thing to be thankful for), this final stage passed more quickly for Ed than for many others with ALS. They knew the end was coming and everyone was able to say their goodbyes. Sleep did not come easily for him at the end because of the pain, but when he did finally fall asleep, his lungs stopped working and he passed peacefully.

It has been 11 months since Ed died. We are trying to decide how to honour his memory for the anniversary. This challenge seems like a good start, but there is no happily ever after here. ALS does not leave room for happy endings.

Please, when you do this challenge, realize that this is not a nameless, faceless disease. It is horrific. And who knows, it may well be perfectly treatable... but because there has been so little interest in research, we know very little about what can actually be done to help. Donation to this campaign MATTER. When you actively contribute, you are making difference. Please, keep it up, and know that what you're doing means the world to those who suffer.

The view from the villa in Italy that Ed booked
for his wife & sons, taken on their trip in May 2014.

Update: while we'd already done the icebucket challenge IRL, numerous people on twitter challenged us this afternoon, and so, here's a version just for our wizard friends! We now challenge Ditto, Kevin the Noob, and J. Todd Coleman!


  1. Oh my god! i'm gonna go shower in ice cold water right now, and i'm not even kiddin' :(

  2. What a well written and very touching way to honor his memory and to encourage us to make a difference by hopefully pouring enough money into this research and finally find something that works. It reminds me of that film Lornezo's Oil. It is a true story about a disease that only affect boys and one boy's father just would not accept the medical community's decision to give up so he self educated himself medically and discovered a cure for the disease.
    We need something to happen like that for ALS. To many are slowly and painfully wasting away.
    Thank you for writing this and being the curator of the museum of his life.
    *Huge Chrissy Hugs*

  3. This was amazing Katherine. I honestly don't know how to respond to this but I am so glad you have found a way to honor his memory and that your family has taken on the challenge. It is a sad story to hear about but I hope that one day we can raise enough awareness and money in order to find a cure for this horrid disease and that no one will have to live with it anymore. We as a community stand together and we will all fight this battle against ALS and raise awareness together. You are an amazing person and you never stop to amaze me.

    Keep inspiring us all and do what you do because you are truly amazing! I wrote a blog post earlier and wrote a quick blurb about how Ed's story made the Ice Bucket Challenge more personal for me and how it changed the way I look at it. If you want to read that, you can do so here:

    You are amazing. May Ed's memory never be forgotten.