I’ve been diagnosed with ALS — a terminal degenerative neuro-muscular disease.
The common expectation is 2 to 5 years of life after diagnosis. They were a little late to diagnose me, so I’m guessing it’s more like 1.5 to 4.5 years for me.
DIAGNOSIS
It was interesting to diagnose me. They would say: do five squats, and I would do them. And then they would say: you don’t have ALS. But of course they were wrong. My legs are still surprisingly capable.
I went to a physical therapist, and each time, even though I tried to improve, I could do less. On the third visit, the physical therapist said ‘I need to talk to your doctor.’
Finally, an ALS neurologist zapped my nerves with a device, and concluded that I had ALS. I was diagnosed about a year ago.
SYMdPTOMS
I lost 20 pounds of muscle. My inability now is with my arms. My hands are somewhat capable, but my arms can’t really do much. This means that my wife has to help feed me, dress me, and shower me. We have hired a gardener and a housekeeper – so my wife has a bit more availability.
The challenges is: if I happen to trip and fall, my arms aren’t capable of preventing me from injuring my head. This has happened three times — three times in the emergency room with injuries to my head.
Also, my lung capacity has degraded. So I find that my energy level is low. Plus, the oxygen to my brain has diminished, which impacts my memory.
BENEFITS
The ALS organization provided a free powered wheelchair. It’s actually pretty beneficial. It only weighs 40 pounds, and it easily folds up — so we keep it in the trunk of the car. It took me a bit to accept that this was something to use. I’ve now become OK with using it. The wheelchair has the ability to travel 9 miles, which is a big distance.
Because I have a terminal disease, and use the wheelchair, I’ve been identified as disabled. We have a sticker that we hang from the car rear view mirror. That gives us the benefit of parking in disabled parking slots, which are close to the entrance of the stores, restaurants, etc.
IMPACT
I am taking anti-depression medication, plus I have a pragmatic head, so I’m not swirling about my situation. It is what it is.
I recently had a feeding tube installed in my abdomen. This provides the ability to add calories if my ability to eat through my mouth declines. Three days after it was installed, I accidentally pulled it out. We rushed to the hospital ER to get it reinstalled — which went quite well.
I feel bad for my wife. I worked full-time for decades, and now that I’m walking away from my job, I won’t be around for very long. She committed her life to me, so I feel bad that I’m parting ways in a few years.
It’s actually a bit weird. Of my siblings and my parents, I’ll be the youngest one to die.
CAUSE
When you search for the causes of ALS, there isn’t a lot of good information. One cause is chemical exposure. The house that I grew up in had an alley behind it where they would spray pesticides once a year. Also, I worked a couple summers at my dad‘s chemical warehouse, but the chemicals that we packaged weren’t particularly impactful. Plus, my next older brother also worked at that same warehouse.
Another cause is athleticism. Professional athletes sometimes get ALS. I’ve always been a runner, including running 10 miles every other day in college. But I wasn’t a professional athlete.
A third cause is metal exposure. I do have some fillings in my teeth. Plus, i did have a metal rod in my shin bone when I broke it in college.
SUMMARY
It’s a bit unfortunate that they don’t have a specific cause for ALS, or a treatment for the disease. It’s sad to be diagnosed with a terminal disease, but I have no control over it. My goal is to make the most of the rest of my life.