My name is Alan Rathbun. I am a 52 year old father of 10-year-old twin boys, a 28-year-old daughter, and husband to the wonderful woman that accepts me just as I am with all my moods, personalities, and querks. I am the youngest of six children raised on the Central Coast of California by my father, a high school agricultural teacher/university professor/department associate dean / international educator, and an amazing stepmother who from day one accepted the addition of my fathers six children to her own three making us a wonderful family of nine. My mother is a retired librarian/teacher and is living in Oklahoma with my wonderful stepfather.
In December of 2019 all the past problems in my life seemed to be equal to a skinned knee when compared to being diagnosed with ALS, also known as Motor Neuron Disease (MND), Lou Gehrig’s Disease, a progressive neurodegenerative disease which attacks motor neurons in the brain and spinal cord resulting in the wasting away of muscle and loss of movement. As this disease progresses, it will be as if I am trapped in my body unable to move, speak, eat on my own, and so many other things we take for granted.
You hear about others being told devastating news and we always feel for them but when the shoe is on your foot…damm, it’s hard to hear and harder to accept. There is no cure for ALS, only treatment to help slow the progression and ease any pain or discomfort. All aspects of life will change daily, weekly, and monthly not knowing what and for how long is a mental challenge I’d not wish on anyone.
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 of 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 overtime 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.
In December of 2019 after two more tests of my nerves and reflexes, it was ruled that my last card in the hat was ALS. Not the card I was hoping to pull but the closure of a diagnosis did add a little relief. My whole world changed with this news!
Being told that on average an ALS diagnosis comes with a 2 to 5-year lifespan was crushing. Even though in the rare instance there are people with ALS who can live longer and equal amounts of cases that live even less. It was a tough diagnosis to hear and my first thoughts were, how will I tell my children, how will Niki my wife handle this and what will her life look like when I am gone. My main worries still revolve around the “what” and “how” for my wife and children but I am needing to look at what and how I will do daily activities as I progress.
For me, ALS started in my legs and is slowly moving to my arms which currently makes dressing and showering difficult by myself but I am managing. I know soon I will need help dressing, showering, and using the bathroom. Then when I am unable to talk we will need to get a speech-generating device to communicate, a feeding tube to eat as I will not be able to chew food. At some point, I will need a ventilator because breathing will become difficult. 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.
Since my diagnosis, eight months ago, I am no longer able to use my walker and have had to move to a manual wheelchair to maneuver around. We are in the process of preparing me for a motorized chair because trying to maneuver with a manual chair is exhausting.
With the need for a powered wheelchair comes the question of how do we transport me and the chair. Also after insurance covers their portion of the wheelchair cost where do we come up with the difference and then there are the other durable medical equipment costs that are not too far in the future.
We are in need of financial help well beyond a little borrowing from family to get by. We are figuring we will be needing a wheelchair accessible van to get me around within the next month, the powered wheelchair, and additional equipment to transfer me out of the power wheelchair so that my wife does not get injured helping me. At this time our fundraising goal is 75k although more will be needed based on my lifespan. 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!
