Monthly Archives: January 2012

A Car Salesman, An Owl and A Vet

Posted on by
1

When a customer arrived at Andersons GM in Woodstock, Ontario to have his front grill replaced, a unique and touching story was set in motion. The customer had hit what he thought was a hawk that morning while driving to work. Thinking the bird dead, he carried on through his day and arrived at GM after work looking for a new grill. Mic Leuszler, a sales rep at GM noticed something moving in the hole in the front grill of the pick-up truck and upon closer examination, Leuszler, a bird enthusiast, discovered the victim was actually an owl – a great horned owl! He asked the owner of the truck to follow him to Yates Veterinary Clinic where Dr. Gord Yates carefully extracted the bird from the front grill of the truck. Miraculously the bird suffered no broken bones and was just generally shaken up. Dr. Yates cared for the owl and nursed it back to health in order that it could be released once again into the wild. It is impossible not to feel good after hearing a story such as this. Wouldn’t you agree? There is so little of people just doing for the sake of the good these days – everyone has an agenda, everyone is looking out for number one. My hat goes off to Mic Leuszler and Dr. Yates. Neither was to gain a thing from what they did for the owl that day – no money, no fame, no accolades. Just two people who cared about another living thing simply for the fact it was another living thing. So simple, so reverent, so compassionate – so refreshing in the sometimes dark, untrustworthy world in which we operate. On behalf of the owl, indeed on behalf of all of us, thank-you Mic Leuszler and Gord Yates. The world needs people like you.

Blogging Neophyte

Posted on by
3

Wanting to learn how to blog? Ya, me too. Sort of a strange statement from someone already apparently blogging isn’t it? The world of blogging is much larger than I could have ever dreamed. My intention for starting a blog was just to scratch this itch I have always had for writing. An online musings sort of deal. So I signed up with a host (fatcow) and downloaded WordPress as my web editor. Huh! I’m starting to speak the lingo! Web host and web editor are both phrases I never would have been using a month ago. So I started writing. I did the basics (VERY BASIC) to get my blog up and running. I thought that I should at least start writing – that was the whole point wasn’t it? I started keeping a list on my phone – every time an idea pops in my head I write it down so I have an extensive list of writing topics. And then I stalled. A bit of life got in the way, and I came up against a wall as far as WordPress goes. Well last night I did something that every realistic, technologically unsavvy, wannnabe blogger should do. I went out and bought WordPress for Dummies. I am 20 pages in and already I have learned a great deal. The main thing I’ve learned is I have a great deal MORE to learn. So wish me luck (she says to no one since she has no readers yet!). I am on a steep learning curve but very excited about the whole thing.

I’ve Learned

Posted on by
3

A few years back there was an email going around called “I’ve learned”. I loved it. It was honest and real. Just how I like things. In that spirit, I have made my own “I’ve learned” list. It’s a little cynical. Just to warn you. :)

I’ve Learned

….that there is a reason 40-somethings should not hang out with 20-somethings.

….that human beings have a never-ending capacity for self-denial.

….not many people will admit it when they’ve made a mistake.

….some people are just nasty. Plain and simple. Nothing caused it and nothing will change it.

….that honesty is not always the best policy.

….that blood is not thicker than water.

….that society blames men more than women in most relationship issues.

….most men are not “pigs” which is how most women label them.

….that money can buy comfort.

….people usually act out because they are craving attention.

….romantic passion never lasts.

….it is probably easiest to know very few people a very little bit.

….keeping up an emotional wall is not always unhealthy.

….learning graceful acceptance is more important than expressing every frustration, complaint and lament.

….there is no such thing as a god in control. He does not cause things to happen, decide people’s fate, nor fix wrongs. He is, however, there to talk to should people feel the need.

….it is insulting when people say “God only gives people what they can handle.” There is absolutely no side of tragedy that is a gift. In any way, shape or form.

….not everything has a bright side.

…. the only guaranteed way to stop a bully is by punching them in the nose.

….women are highly competitive.

….lots of men speak to women as if they are stupid.

….that you come into the world alone and that you go out of the world alone.

….staying neutral can be as bad as being the oppressor.

….that the popular saying “do not judge” is not only impossible to carry out but is also dangerous.  Many wrongs throughout history have been corrected only because someone had the courage to judge. If you don’t believe me ask Rosa Parks.

….no matter how much you love your children, they are going to blame you for at least one of their character flaws.

….contracts, policies and legal agreements are not worth the paper they’re written on.

….everything is political. There is very little you will encounter that is not simply people maneuvering themselves within a group in order to gain control or power.

….having children may not necessarily harm a relationship but it definitely won’t help a relationship.

….people who believe that somehow life is just giving you “what you asked for in order to grow” are never people who have suffered the illness and subsequent death of a child, the murder of a loved one, the loss of more than one member of your family at a time,  the witnessing of torture, inhumanity, cruelty or suicide, or been the victim of betrayal of any kind. (Not to mention a person who has suffered all of these things in one life time.)

Who knew?

Posted on by
Reply

I have played more roles in this life than I care to count but here I go again. Boys (because it is predominantly boys) who have DMD have only one option in the way of medication. Steroids. They are no miracle. They won’t come anywhere close to curing DMD but they do keep the heart stronger for longer. And the lungs. And breathing is important. If we can avoid that tracheal intubation it would be a very (VERY) good thing. They have their down side. Swollen face, chubby body, stunted growth, increased appetite to name a few. But when you’re dealing with something that could rob your son’s life in his teens you do what you have to do. Which leads me to my new “role”. I think I am morphing into an advocate. I never thought I would say that but here I am, seven years after diagnosis, seven years of hoping maybe the doctors were wrong, seven years of saying “it won’t take over my life” and here I am. An advocate. It’s an insidious disease. It creeps up like a thief in the night. Slowly, methodically. Before you know it, there it is in your face at every single turn. “Look at me” it mocks. Right now the only defense is deflazacort - a steroid. However our health care system, in all its wisdom,  is not funding it – they will fund prednisone but not deflazacort. Does that make any sense? Dr. Doug Biggar at Holland Bloorview has worked with deflazacort for twenty years. He is adamant it is the superior steroid. Fewer side effects and more readily tolerated. So I’m on a mission. I am starting with our MPP and the Minister of Health. Dr. Biggar is in full support. Wish me luck. Let’s hope I can see it through to the end and that I can accomplish something. It’s a little thing but it’s better than nothing. In the words of a very wise and favoured author, Dr. Seuss, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” With a heart heavy with caring and love and hope, forward I go.

Dreams

Posted on by
1

I am not one to have dreams very often. And certainly not one who is lucky enough to recall every dream in vivid detail. But once in a while, once in a blue moon, on a rare, and fortunate occasion I have a dream that stays with me. It happened the other night. I dreamt of my Mom who’s been gone now for 10 years. I was in some kind of shop in the dream and I looked up and in walked my mother. Her smile, her hair, her eyes. My heart soared. I walked to her and we hugged. And it was the most divine hug I have ever experienced. In the morning I could not shake the feeling that I had seen her for real. What a gift. There are those who believe that loved ones really do visit us in dreams. I am usually one to balk at that kind of quackery. Regardless of what made the dream materialize – my mother’s soul, or just random brain chemistry – it sure felt good. I was comforted by it the entire next day. It got me to thinking about her. Ten years. Wow, what she has missed. She never could have imagined that I’d be sitting in my kitchen blogging away on my laptop computer. She’d be surprised at so much of the changes in the last 10 years. Most of all she’d be surprised and proud to see her oldest grandson (and the light of her eyes before she died). Fifteen and tall, with a deep voice, a reserved demeanour, and a unique sense of humour. Oh how she’d love to have known him. She’d be saddened by my youngest son’s challenges with DMD. I really am not quite sure how she would have handled the horrible news at diagnosis – nor how she’d be coping now as he becomes weaker and weaker and more dependent on equipment and his parents and other people to help him. You know what? I’m glad she never had to see it. I am thankful she died before we found out. For her devastation, I’m sure, would have been as complete as mine. So wherever you are Mama, I sure do miss you. And thanks for the hug.

Guess what? Money can buy health

Posted on by
Reply

My son has Duchenne Muscular Dystrophy (DMD). I am registered on a site called PPMD (Parent Project Muscular Dystrophy). This organization is in the United States. There are various PPMD’s around the world – I often wonder why Canada doesn’t have its own PPMD. Anyway I digress. DMD is a genetic mutation. To put it in the most simplest way possible in boys with this disease, something is either missing, duplicated or nonsensical in the gene that produces dystrophin. These things are called exons and due to one (or more) being missing, or duplicated, or nonsensical, the body does not produce dystrophin – which is the protein necessary for healthy muscles. Hence boys with DMD have muscles that are literally “wasting”. Having attended a conference in London a few years ago and staying abreast of the latest in research I have discovered a dark side to medical research. There have been two tests world-wide to test boys with “exon 51″ deleted. Then a new trial started in which they are testing boys with “exon 50″ deleted. You would think they must be testing the most prevalent forms of exon deletions wouldn’t you? Well that is not always the case. There is a charity in the USA called Charley’s Fund – run by a doctor and his wife whose son Charley has DMD. His deletion is exon 50. Guess who donated five million dollars to fund the trial testing exon 50 deletion? You got it – Charley’s Fund. Anyway, after much discussion in a thread on the PPMD site I wrote a response that sums up the fact that money CAN buy health. I thought that for today’s blog I would paste my response below. Please read carefully. I am not criticizing Charley’s Fund at all. In fact, if I were the parents I would do the same. But I like my response because it brings up the fact that there are so many ethical questions raised when you have a son with a disease as serious as DMD.

“I agree that is seems unfair and at times even unethical but money DOES make the world go round. I never used to believe that but I sure do now. Money can even sometimes buy health. The drug companies really only have one aim and that is to make money. Is there really anything wrong with that though? It is the political system in which we live – if we want drug companies to all make the same money wouldn’t we have to change our entire capitalist system. Communism perhaps? I don’t believe that the individuals working in the labs think only about money – I am sure when they treated that Duchenne dog and brought it from almost not walking at all to running down a hallway they must have rejoiced for reasons far deeper than money. But the shareholders of the company are in it for one reason and one reason only – to make money. In defence of Charley’s Fund – if you were the parents of a boy who was fortunate enough to win a lottery of 100 million dollars, would you not be tempted to approach a drug company who had already shown success in exon skipping and offer to fund the next trial IF they test the exon your son happens to have deleted? Of course you would. I agree that Charley’s Fund did not “win a lottery” and in fact have used monies raised from the public in order to fund the next trial however that is a whole other discussion. It is up to the families of Duchenne patients to become knowledgeable about the various charities and to work to raise funds for the charity that seems to do the most for all Duchenne families. Or – invest in the one that is going to give money to a company that is testing YOUR son’s exon deletion next. Ultimately, it is a personal decision. It is a bit of a philosophical discussion – something that has happened over and over again since we found out about our son’s diagnosis. This disease is not just a physical/emotional thing, it brings about very deep questions about many different topics. On a lighter note, the successful skipping of any exon will only open the gates to chemistries that can skip other exons – and from what it seems the drug companies are in discussion with the FDA as well as the governing body in Europe (forget what they are called) to expediate the testing process once exon skipping of one exon has proven to build dystrophin in the cells of the body. We can’t forget that some boys have the disease due to a nonsense mutation or exon duplication – so the ‘Golden Willie Wonka (great way of putting it by the way) exon skipping ticket’ is useless to them regardless of what company is skipping which exon. Every family needs to count. Every boy needs to matter. Unfortunately we live in a world where sometimes (many times) money over-rules that.

 

 

Winter

Posted on by
Reply

Winter: a really terrible season for people dependent on wheelchairs. Think about entering your home after you have been outside. There is snow on your shoes so what do you do? You take them off and carry on with your day. My son is not so lucky. He enters the home but because his feet never touched the ground it is the wheels on his power chair that have snow on them – not only on them but literally in them – the deep treads in the front wheels full to the brim with snow. I guess I need to just accept that winter at our house will always be a bit of a flood after coming in from an outing in the winter. A small thing perhaps, but an irritating obstacle just the same. Life on wheels. It ain’t easy.