I\u2019ve been diagnosed with ALS \u2014 a terminal degenerative neuro-muscular disease.<\/p>\n\n\n\n
The common expectation is 2 to 5 years of life after diagnosis. They were a little late to diagnose me, so I\u2019m guessing it\u2019s more like 1.5 to 4.5 years for me. <\/p>\n\n\n\n
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DIAGNOSIS<\/strong> 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 \u2018I need to talk to your doctor.\u2019<\/p>\n\n\n\n Finally, an ALS neurologist zapped my nerves with a device, and concluded that I had ALS. I was diagnosed about a year ago.<\/p>\n\n\n\n SYMdPTOMS<\/strong> The challenges is: if I happen to trip and fall, my arms aren\u2019t capable of preventing me from injuring my head. This has happened three times \u2014 three times in the emergency room with injuries to my head.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n <\/p>\n\n\n\n BENEFITS<\/strong> Because I have a terminal disease, and use the wheelchair, I\u2019ve 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.<\/p>\n\n\n\n <\/p>\n\n\n\n IMPACT<\/strong> 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 \u2014 which went quite well.<\/p>\n\n\n\n I feel bad for my wife. I worked full-time for decades, and now that I\u2019m walking away from my job, I won\u2019t be around for very long. She committed her life to me, so I feel bad that I\u2019m parting ways in a few years.<\/p>\n\n\n\n It\u2019s actually a bit weird. Of my siblings and my parents, I\u2019ll be the youngest one to die. <\/p>\n\n\n\n <\/p>\n\n\n\n <\/p>\n\n\n\n CAUSE<\/strong> Another cause is athleticism. Professional athletes sometimes get ALS. I\u2019ve always been a runner, including running 10 miles every other day in college. But I wasn\u2019t a professional athlete.<\/p>\n\n\n\n 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.<\/p>\n\n\n\n <\/p>\n\n\n\n SUMMARY<\/strong> I\u2019ve been diagnosed with ALS \u2014 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\u2019m guessing it\u2019s more like 1.5 to 4.5 years for me. DIAGNOSISIt was interesting to diagnose me. They would say: do five squats, … <\/p>\n
It was interesting to diagnose me. They would say: do five squats, and I would do them. And then they would say: you don\u2019t have ALS. But of course they were wrong. My legs are still surprisingly capable. <\/dr><\/p>\n\n\n\n
I lost 20 pounds of muscle. My inability now is with my arms. My hands are somewhat capable, but my arms can\u2019t 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 \u2013 so my wife has a bit more availability.<\/p>\n\n\n\n
The ALS organization provided a free powered wheelchair. It\u2019s actually pretty beneficial. It only weighs 40 pounds, and it easily folds up \u2014 so we keep it in the trunk of the car. It took me a bit to accept that this was something to use. I\u2019ve now become OK with using it. The wheelchair has the ability to travel 9 miles, which is a big distance.<\/p>\n\n\n\n
I am taking anti-depression medication, plus I have a pragmatic head, so I\u2019m not swirling about my situation. It is what it is.<\/p>\n\n\n\n
When you search for the causes of ALS, there isn\u2019t 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\u2018s chemical warehouse, but the chemicals that we packaged weren\u2019t particularly impactful. Plus, my next older brother also worked at that same warehouse.<\/p>\n\n\n\n
It\u2019s a bit unfortunate that they don\u2019t have a specific cause for ALS, or a treatment for the disease. It\u2019s 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.<\/p>\n","protected":false},"excerpt":{"rendered":"