I am Angela H Ferguson

The waiting time for a person to see a neurologist is months. If a person were seriously injured, they would be shit out of luck. From January through June, I took more tests than I have ever done – multiple MRIs, EMG, nerve conduction test, blood test, DNA test, and x-rays. They all came back inconclusive.

My last neurologist appointment in August revealed a diagnosis – the doctor said I have a motor neuron disease, amyotrophic lateral sclerosis, or ALS. It is a neurodegenerative disease that has no cure and is fatal. One of the three hardest days of my life. But what differs from almost every person is how fast and in what order symptoms and progression occur. And, while the average survival time is 3 years, about 20% of people with ALS live 5 years, 10% survive 10 years and 5% live 20 years or longer. Progression isn’t always a straight line in an individual either. It is common to have periods lasting weeks to months with very little or no loss of function.

A gradual onset of progressive muscle weakness – which is generally painless – is the most common initial symptom in ALS. Other early symptoms vary but can include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and uncontrollable periods of laughing or crying. Since ALS attacks only motor neurons, the senses of sight, touch, hearing, taste and smell aren’t affected. For many people, muscles of the eyes and bladder are generally not affected. Unfortunately, chewing, swallowing, and breathing are affected. Imagine smelling your favorite food but you cannot eat any of it.

Every 90 minutes, someone is diagnosed with the disease (5000 average per year), and someone passes away from it. Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in people in their twenties and thirties. ALS is 20% more common in men than women. However, with increasing age, the incidence of ALS is more equal between men and women. About 90% of ALS cases occur without any known family history or genetic cause. The remaining 10% of ALS cases are inherited through a mutated gene with a known connection to the disease. For unknown reasons, military veterans are two times more likely to be diagnosed with the disease than the general public.

The disease was identified in 1869 by French neurologist Jean-Martin Charcot and became more widely known internationally on June 2, 1941, when it ended the career of one of baseball’s most beloved players, Lou Gehrig. For many years, ALS was commonly known as Lou Gehrig’s disease. Remember the ice bucket challenge in 2014? Around the world, people were dumping full buckets of ice water on their heads and committing to donating money and supporting ALS. The challenge was started by two people having ALS and helped awareness of the neurological condition. The Ice Bucket Challenge donated over a hundred million dollars to boost research efforts.

The point is to illustrate the lack of research and attention this disease receives. Currently, there are five drugs approved to treat ALS, the last one being approved in 2022. Additionally, there have been a few genes discovered that are markers for the disease. ALS is not at the top of the most serious diseases facing the world, so the research and attention are not there.

When one first hears the diagnosis, it is a matter of disbelief. A person is angry, sad, and asks why it is happening to them. A person cries and curses in the same second. And to be quite honest, it took me about a month to come to grips with the outlook. We are all going to die but the age-old question has been “when?”. It becomes real when a person is able to put a time frame on it.

The first month after diagnosis was filled with anxiety and panic attacks. I did not want to go to work because I did not want anyone to see me gradually get worse. Until August, all the symptoms I had were in my left arm but now my left leg is gradually exhibiting weakness which includes stepping and pushing off and my right arm is starting to lose grip and coordination. Fortunately, my workplace allowed me to cut hours and work remotely. Personally, I do not like working remotely because one is so disengaged from their co-workers. Even during COVID-19, I was at work almost every day and might have worked remotely two to three times during the past two years.

Even today, I still cry, because of the frustration of being trapped in my own body and for those who have to care for me until the light goes out. A few weekends ago, I had to sit in front of my four children and tell them important things they needed to know as I got sicker and after I die. Yes, a very difficult conversation but it needed to be had while I am still able to speak.

I am terrified to go to sleep only to awaken and determine which body part or function does not work the next morning. This disease robs a person of function and it is very stressful as you see your body shut down. I believe a person suffers if only mentally. I heard the other day the more a person suffers the closer they are to God. If that is true, I am probably standing across the football field from Him now.

Since the diagnosis, I cannot tell you how many times I have heard “live your best life.” Well, let me say, if you have not lived your best life before being diagnosed, it is too late. For those that have known me, I have always been a strong independent person and outspoken at times. Today, my independence and strength are waning because it takes help from my wife to do much of anything – from putting on my shoes, to opening a Gatorade, and to get up from a bench.

I don’t want your pity or your most sorrowful condolences. I tell you these things because I want your action and commitment to help end this disease. I want you to remember my strength, humor, and how I have approached this disease. I want you to think about your own lives and know this could happen to you or someone you love. I want you to know that ALS will only be cured by research. And, research takes money and time. I fully believe with today’s technology and medicine that a little serious application of time and effort will cure ALS.

I tell you these things because I have found tomorrow to be less important than today. Tomorrow is not guaranteed to anyone so why is everyone putting things off until tomorrow? I tell you these things because no matter what situation a person is in, live each day to the fullest. Do not make plans for tomorrow and do not have any regrets over what you have done today.

Do I have any regrets or advice? Do not sweat the small stuff. Tell people you love them more often. Figure out what you love to do and be the absolute best. Question status quo often. Give others immediate and honest feedback. Get angry less often. Hug more often. Have fun at work. Care about other employees. Share your experiences with others. Forgive others if possible. Believe in yourself!

To wrap this up, in less than one year, my life has changed. Going from a comfortable life, not caring about the world, and finally getting the things that I wanted in life to becoming a prisoner in my own body. To all my friends and connections, especially those I have had personal relationships with over my career, I want to thank you for your mentorship and overall friendship. You’ve been great! I do not like saying goodbye so let us leave it at au revoir.