Rob Ford

Another PALS died today. I could start every blog entry with this sad note; we die at a prodigious rate. It was another PALS whom I knew through the Internet. My online friend, his sister, is really the person I know. Now she has lost a brother, a man near my own age who struggled with this nasty disease for only 14 months. A family and community grieves.

As I started my day today, I read a news article about Rob Ford, the celebrated mayor of Toronto. He has been diagnosed with Liposarcoma, a rare and aggressive form of cancer. This type of cancer is highly treatable through chemotherapy, radiation and possibly surgery. Rob Ford has hope, a fighting chance. We with ALS don't.

Here are a few thoughts to consider as we think about the lives of these two men, with two different and terrible illnesses, one still fighting for his life, and Jim, a Person with ALS who fought a battle that had only one possible conclusion.

Rob Ford has a form of cancer called liposarcoma. It attacks 2.5 out of every one million people. Jim had, and I have, ALS, a form of motor neuron disease that attacks 60 out of every one million people.

Research into other forms of cancer has lead to treatments for all forms of cancer, giving Rob Ford a fighting chance to beat his illness. Research into ALS has lead to no truly viable treatments, offered no chance of a cure. There are other forms of motor neuron disease such as progressive bulbar palsy, pseudobulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy Type I and Type II, Kennedy’s disease, and post-polio syndrome. This doesn't even begin to look at similar diseases that are quite possibly related to MND and certainly fall under the broader net of neurological illness, things like MS, Parkinsons, and Alzheimer's.

Rob Ford has a disease with a 60% five year survival rate and a 40% ten year survival rate. That sounds terrible yet it gives him more than a fighting chance to live well into old age. Jim had, and I have, ALS, a disease with a 20% five year survival rate and a 5% ten year survival rate. I will almost certainly not live much past 60, and I was 57 when I was diagnosed. Jim only lived 14 months after his diagnosis; he was 63 when he died. Most PALS die with the first three years.

Every year we raise millions to find a cure for cancer while only a fraction is raised for neurological illness such as ALS. I think I know why. You can see cancer, or if you cannot see it you can certainly visualize it in most cases. It's a lump growing wildly inside of you, your body destroying itself. We actually know that some things in specific will cause cancer, and we know how to avoid a great many kinds of cancer. It is a tangible thing,

Neurological diseases, on the other hand, are largely hidden away in our brain. We cannot see ALS; all we can see is its results. We cannot visualize the complex, microscopic functions that this disease uses to kill PALS; we just see them wither away and die. ALS is a hard sell; it is largely intangible and it deals with the brain, a part of the body we still know so little about. ALS, along with a great many other neurological illnesses, will be beaten one day. I hope that day comes soon.