You and your spouse or loved one is at your umpteenth doctor appointment over the past 10 months to find out what is wrong with you. You have been poked, prodded, jabbed, and stuff in MRI’s with no word of what you have, though some very scary conditions have been ruled out like MS, Parkinson’s, and a few other neurologic conditions. So the doctor performs two final tests by shooting an electric shock through your nerves, not fun, then jabs a needle into your muscles in different spots to read the muscle’s response waves, really really not fun. At the conclusion of the final test, the doctor in his most empathetic voice says the worst three letters, ALS (Lou Gehrig Disease)…he continues to inform you that unfortunately it is 100% fatal. There are two medications on the market that could, maybe, or possibly extend the average post diagnosis life span of 2 to 5 years by 6 to 9 months. There will be additional drugs prescribed to ease some of the effects.
Imagine is not what happened to me, I was/am the patient that was there at the appointment. What do you say? What do you think? What do you hit? Who do you scream at? My wife and I were numb and in shock. It took a short time for my wife to start sharing her emotions and all I thought was what will she do when I am gone. I did become angry and still am that this has happened to us.
For those, which is most, ALS is a vicious disease that kills motor neurons. As they die off you lose strength and use of muscles. You lose the ability to walk, move your legs and feet. You lose the ability to use your arms, hand, and hold up your own head. You lose the ability to talk, eat, and swallow. It even affects your ability to breathe on your own.
What does the motor neuron do?
Motor neurons of the spinal cord are part of the central nervous system (CNS) and connect to muscles, glands, and organs throughout the body. These neurons transmit impulses from the spinal cord to skeletal and smooth muscles (such as those in your stomach), and so directly control all of our muscle movements.
Of course, there are devices to help you day in and out, special eating utensils, power wheelchairs, bathing benches, speech assistance computers that use Eye-Gaze technology. And depending how and what you consider quality of life to look like there are feeding tubes and you can go all out by having a Tracheotomy to keep you breathing assisted.
The journey to my diagnosis seemed to have started in February of 2019 when I first started to fall down but now after learning more about how ALS affects our motor neurons, I believe the journey started much earlier, sometime in the middle of 2017 when I noticed I was walking with a heavier foot, which at the time I put off to the shoes I was wearing. After 3 to 4 months my new walking just became the norm and I didn’t give it a second thought. In the fall of 2018, I began having a small limp that over time increased and became more noticeable.
In late January of 2019 while in Fremont, CA for a work conference we took a tour of the Tesla Manufacturing Plant. A plant large enough to hold one hundred 747 airplanes. After the basic tour, we walked the building and grounds which was more difficult than I had expected. Trying to keep up with my group was not just difficult to maintain the speed but I had the overwhelming feeling that I may trip or fall. It was an amazing experience but exhausting. Then in February of 2019, my limp increased and now my right foot started to drag a little which caused some falls so I went to the doctor to see what could be the problem. After blood work and a head MRI which didn’t tell anything, I was referred to a neurologist who sent me for 3 MRI’s of my spine, more blood tests, and a bone scan to rule out what was not wrong with me.
It was like there was a hatful of ailments that I could have and the doctors were working to eliminate possible diseases I didn’t have. During this process, I did have a large fall at work. I tripped over a bolt in the concrete floor that stood up maybe ⅛ of an inch and down I came on a block of wood…BAMM, now I have a cantaloupe size injury of my right hip that took over three months to heal. Also during this time my walking and ability to step up curbs increased in difficulty so my wife purchased me a rollator walker to get around more safely and we were able to get a disability place card so I could park in handicap spaces getting closer to buildings to help eliminate any more possible falls. I am lucky that my employers worked with me for work accommodations for my walker, without it I would have had to change jobs to a more desk related job because I would have no stability on my own to walk around without falling.
For me, ALS started in my legs and is slowly moving to my arms which makes dressing and showering difficult and tiring so now I have help dressing, showering, and using the bathroom. I am becoming unable to talk so we are working to get a speech-generating device to communicate. There are so many different options to help continue life but to me it’s about what quality looks like. The doctors tell me it is up to me how far and what devices I want to add and use, which is a challenge in itself to decide on as part of me wants none of it and the other part wants to be able to enjoy life and my family as long as possible but all while having a quality of life.
We are in need of financial help well beyond a little borrowing from family to get by. We have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses
My wife and I thank you all for your generosity. Please keep in touch as we will continue to post health updates as well as information about the ALS community.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
