Amyotrophic Lateral Sclerosis (ALS)
What is ALS? I am not an expert. Much of this website is centered around my personal journey with the disease. I can only report with surety on how it affected me. I believe it is a syndrome with each patient having a different expression of upper and lower motor neuronal involvement. Each patient falls on the spectrum from primarily limb-onset to primarily bulbar-onset. I was fortunate to fall on the limb-onset side of the spectrum, which gave me time.
In Medical School you are exposed to many medical specialties. By the end of the third year, you are expected to know what direction you wanted to go. Each specialty has its own profile of curative potential. At the time I graduated in 1981, neurologists were viewed as the ultimate diagnosticians. How they rendered a presumptive diagnosis from the rudimentary tools at their disposal was nothing short of magical. Those were the days of detailed physical exams, tuning forks, pinwheels and pneumoencephalograms. When they rendered their opinion, there was often little that could be done. While I admired their craft, I never considered becoming a neurologist. Knowing my personal needs, I sought out a specialty where I could have more success in changing people’s lives. I became a fellowship-trained Cardiac Anesthesiologist.
Nowadays, detailed physical exams are a thing of the past, replaced by sophisticated imaging exams and other tests. The accuracy of their diagnoses is far superior but their ability to cure many of the diseases they diagnose remains limited. ALS, classified as a motor-neuron disease, remains frustratedly poorly understood. There is only one medication approved for ALS (Riluzole,1995) and it is claimed to be effective in prolonging life in some patients for three months. I have been taking it for 12 years. There is much ongoing research and patients are given opportunities to enroll, but they require commitment of time and energy. I have been selective in the studies I participate in, electing to not overcommit the time I have remaining. ALS is a fatal disease. Patients are devastated by the diagnosis. There is no cure. In most cases, they can’t even tell you how you contracted the disease. Despite the hopeless nature of the disease, there are many heroes.
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The ALS society has aggressively advocated on behalf of the “afflicted” with insurers, used the ADA to push for accommodation to the needs of ALS patients, and raised the profile of ALS in society which has resulted in prodigious fundraising for research.
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The multi-disciplinary clinic staff is comprised of empathetic professionals who support you on your journey. The team is composed of Physical Therapists, Occupational therapists, Speech therapists, Respiratory therapists, social workers, Chaplains, Nurses and led by Neurologists. They provide the structured environment necessary to cope with this progressive disease. The team advocates on behalf of the patient with other caregivers, insurance companies and support networks. They counsel on depression and spiritual needs. They help you make a Living Will and appoint a Power of Attorney. They do not offer false hope. They know it is a fatal disease.
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Researchers are hard at work searching for a cure. There are many promising studies in the pipeline. I remain optimistic that, with time, they will develop effective treatments for this devastating disease.
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Lastly, and most importantly, are the courageous patient advocates afflicted with ALS. People like Ady Barkan, Brian Wallach, Steve Gleason, Tim Shaw, and many more. They are heroic figures to me, so bravely sharing their journey on social media for all the world to see. They put a human face on ALS and make the suffering more real. Yet, they continue to joyfully live their lives with gratitude for the many blessings that life gives us. They give us something to emulate. I know I try to.
After I received my diagnosis, I elected to not read anything about ALS. I advised my clinic that I only wanted the bare minimum of information. I knew enough to know that it was all bad! I coped with this devastating diagnosis by Conscious Denial, acknowledging the reality but electing to dwell on it. I continued to work as an Anesthesiologist for another 13 months until my confidence that I could physically respond to a crisis was shaken. That revelation occurred on a Friday, and I knew I was done after the first case the following Monday. I was then caught in the vortex of the progressive slide for the next 2 years as I felt my body being taken from me. Then I found yoga.
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Helpful Links:
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https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als