To start, let me say that I am discouraged today.

Why? Because the President left ALS out of the speech last night while specifically mentioning other diseases in his list of priorities, and it is abundantly clear that the FDA of the United States not only doesn’t care about ALS patients, they are ACTIVELY slowing the approval of treatments. ACTIVELY. How can we have approved vaccines for COVID in less than a year, and some approved COVID treatments, but some ALS treatments have been in their approval pipeline for over 10 years? We need to worry about side effects? Seriously?

ALS is 100% fatal.

Don’t take my word for it, read the excerpt from the NIH, and pay special attention to the italicized parts.

The National Institute of Neurological Disorders and Stroke says:

What is amyotrophic lateral sclerosis?

Amyotrophic lateral sclerosis (ALS) is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease.

In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to twitch (called fasciculations), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements.

Early symptoms of ALS usually include muscle weakness or stiffness. Gradually all muscles under voluntary control are affected, and individuals lose their strength and the ability to speak, eat, move, and even breathe. Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. 

If you are having trouble understanding this cold description, let me simplify their words. ALS is 100% fatal. It is a horrific disease that eventually leaves most people with their cognition and emotions intact, but the entire body fails. No walking, no eating real food, eventually, no breathing. Some places refer to it as the “glass coffin” disease.

There are no real treatments or cures. Period. NONE. Imagine going to your doctor and being told you had cancer and then be told to just go home and get your affairs in order because there are no options for you. No chemotherapy. No radiation. No surgery. Sounds awful, doesn’t it?

So, now that you are probably about to walk away from reading this post because it is too much, let me tell you the good things.

• The doctors and nurses (with a few notable exceptions) who choose to work in this field are the most dedicated and passionate group you will ever meet. Imagine going to work each day knowing that 100% of your patients will die a God-awful death, and yet you still show up and try your best.
• Families and patients with ALS are rock stars of strength, humor, and creativity. As we have been on this road, every day, I learn from my companions on this journey, and their ability to remain centered and filled with love amazes me. I’ve read WAY more people complaining online about having to wear a mask during COVID than I’ve heard ALS families or patients complain about what the universe has handed them.
• ALS helps you strip away all the unnecessary garbage in your life. When you are fighting for survival, and for each precious moment with people and creatures you love, you stop worrying about things like wearing a mask or whether your favorite beverage is in stock at the store.
• It has shown me again the strength of our children, family, friends and creatures. You want to see love in action? Watch our huge sheep Hila gently walk up to Paul to rub his face, or watch her walk beside him as he leaves the barn so he has something to hold on to. Watch our grandchildren help their grandfather take a walk and hear them make peace with the reality that he will probably be in a wheelchair at some point. Watch our sons help turn our house fully accessible. See the containers of soup that arrive from our daughter. See the notes, texts, emails and random acts of baked goods that arrive. See our phones light up with video calls just to check in on us. See local practitioners learn how to help someone with ALS. That is love. That is strength. That is a gift.

So, yes, today, I am discouraged beyond belief that a system (our government) has failed the ALS community again. But I also am grateful for what this journey is teaching me each day.

Today, I choose to be grateful for love, strength and laughter.