Chapter 4: Know Thy Enemy
“If you know the enemy and know yourself, you need not fear the result of a hundred battles. If you know yourself but not the enemy, for every victory gained you will also suffer a defeat. If you know neither the enemy nor yourself, you will succumb in every battle.”
There is no viable treatment for ALS, so pALS will try anything and everything under the sun out of desperation.
So what do we know about the enemy? Jamie and I have scoured the internet, driven to hospitals across the country, and consulted with multiple neuromuscular and ALS specialists only to discover that the answer is a resounding “We don’t know much.” Two points for honesty.
We just got back from our trip to one of the most well renowned hospitals in the world and have never felt more alone in this fight. Obviously, that feeling has changed upon our return to the showering of love and support from our friends and family, for which we are eternally grateful. But the fact of the matter is that research on this disease has been painfully underfunded for over a century.
The “ALS Ice Bucket Challenge” was a big step in the right direction and raised both money and awareness (to the tune of $220M and 2.4 million videos). Yet there are still only TWO FDA approved drug treatments for ALS and they are extremely underwhelming, impractical, and expensive. The best option of the two MAY extend my life by two to three months. It’s not nothing but its not super encouraging either when that’s all your doctor can offer you after he just tells you that you have a disease where, on average, people die after 3 years.
So that’s what we are up against. The medical equivalent of guerrilla warfare. An enemy cloaked in the shadows, shrouded in mystery. No way of knowing when, where or why for that matter it will attack. Historically, that has always made for a scary adversary. Time for a little reconnaissance.
Amyotrophic lateral sclerosis (ALS) is a neurological (nervous system) disease. Sometimes called Lou Gehrig’s disease, ALS belongs to a group of disorders known as motor neuron disease. While ALS typically progresses rapidly, it is a variable disease that progresses at different rates for different people.
ALS attacks nerve cells, called motor neurons, that control voluntary muscles (the muscles we are able to control). When these cells die, voluntary muscle control, and movement are lost. This leads to progressive weakness and disability. People with ALS eventually lose their strength, ability to move their arms, legs and body, and the ability to breathe on their own. In most cases, their minds remain sharp and alert. There is no cure for ALS.
While ALS is a considered a “rare” disease, it is one of the most common neuromuscular conditions yielding 15 new diagnoses in the US every day. Sometimes ALS is inherited (approx. 10% of the time), but in most cases, there is no known cause.
While it’s impossible to predict progression of this disease (and it can change suddenly), it would appear that I am pretty early on in this fight and I’m progressing relatively slowly. If I were diagnosed even 5 years ago, we would not have many reasons to hold on to hope as there were only a couple drug trials underway. But that number has grown to over 80 now in the pipeline, and I’m already enrolled in one.
Our current strategy is to take the medications and supplements already available, luck into the right drug trials (and NOT get placebo), care for my body and general health, and pray for slow progression until something more promising comes along. Basically, just stay alive until the reinforcements arrive.