My MS: Coping with multiple sclerosis has reflected the rest of my life

By Dan Aznoff | Article Provided by Coeur d’Alene Living Local

My first impulse was to slug the doctor.

Not because he had just diagnosed me with the chronic disease known as multiple sclerosis. It was his bedside manner and an apparent lack of compassion.

My neurologist was probably being practical when he suggested that my wife and I stop on our way home to buy a cane and insisted that we purchase as much life insurance as possible “while I still could.”

This could not be happening to me. Not now. I had just started to live my dream. Susan and I had two beautiful children. We had just completed the construction of the home of our dreams nestled in the woods.

I can remember carrying my infant son down the stairs and holding the rail to steady myself from what I assumed was pure exhaustion. I needed two hands to grasp the container as I poured milk into his bottle. But it was the trip back up the stairs (pun intended) that worried me most. I remember literally crawling up the stairs to keep my infant son and his bottle above the carpet.

After Joshua was fed and safely tucked back into bed, I found my way back under the covers. It was not cold, but my body shivered as if I were standing outside naked in a snowstorm.

After I reluctantly admitted that something was wrong, Susan (as she has done a million times since) jumped into action. In a time before the Internet, she spent Sunday researching doctors and gathered information to cope with my unknown ailment.

By the time we got home from the doctor on that Monday morning, she had a dietary regiment that eliminated processed foods, reduced carbs and practically eliminated all sugar. Susan also ended my “pity party” by urging me take an active role in protecting my health for the sake of our family.

Multiple sclerosis is a disease that attacks the central nervous system by blocking messages from the brain to every part of your body. It can cause vision problems, muscle weakness, issues with coordination, numbness and lapses with memory.

However, I seemed to be an exception to the rule. The vast majority of individuals diagnosed with MS are women. Most of these women spend their youth in areas in higher longitudes, like the Pacific Northwest, the upper Midwest or Scandinavian countries. My wife and I both grew up in Southern California. We did not move to Washington until I was 25. Our son was born when I was 30.

Doctors diagnosed me with the relapsing/remitting form of MS, which meant my body would suffer exacerbations and (theoretically) get back about 80 percent of the senses and capabilities that had been lost, presumably over two or three weeks. When my symptoms subsided after my first episode, I was left with zero balance and had lost my ability to type. The senses that disappeared came back very slowly.

My writing for the past 30-plus years has been done with two-finger, hunt-and-peck. The running joke has been that I have the ability to type at 24 words per minute, per finger.

The one thing that was clear from the start is that MS impacts each person differently. For me, my left side was left completely numb, and my slurred speech made many people presume I had imbibed in too much alcohol.

Reality struck over the next few years after I was convinced to sell my beloved bicycle and abandon my routine of playing tennis three to four times per week. I had made my way through college playing competitive tennis, so it was a major blow when I finally agreed to sell my rackets at a garage sale. (I did keep my first racket. There is only so much one person can be asked to sacrifice.)

At first, I tried to hide my physical limitations from employers and colleagues. But I have since learned to accept my situation as the new normal. Friends accept the fact that I may not be able to join them on aggressive treks, but I can still enjoy a relaxed stroll.

We love to play games in our house, so I have been relieved of my turn to shuffle a deck of cards or pick up small tokens from a smooth surface.

Over the first several years, my exacerbations hit me every four years like clockwork. Usually during times of high stress, like when I started a new job, when relatives flew in to celebrate my son’s Bar Mitzvah and when my wife surprised me by flying in my buddies from college to celebrate my 40th birthday.

Gratefully, multiple sclerosis has been on the cutting edge of medical research. I was selected by lottery to receive the first medication available. However, my insurance company was hesitant to cover the cost of the first medication that promised to reduce the frequency and severity of exacerbations. It took my doctor to get on the phone with the insurance company to explain they could choose between covering the cost of the injections or be forced to pay for repeated expensive trips to the emergency room.

I am still not sure how my lovely wife maintained her demeanor a few years later when a representative from the insurance company made the decision to no longer cover the $6,500 monthly cost of my medication because I had not had an episode. Calmly and logically, she explained to the paper-pusher that the medication could be responsible for the lack of relapses.

My coverage was renewed.

Over the years, my doctors have prescribed three separate injectable medications for me. I’ve been on Copaxone since 1999 after a major exacerbation left me unable to walk. Despite the temporary disability, I refused to buy a cane. But I did use an old baseball bat to help me get around the house.

Truth is, I am luckier than most. Unlike most MS sufferers, I am still able to drive. I am not able to work 40 hours every week, but I am still able to maintain a major portion of my professional duties and my domestic responsibilities. That is probably because I work at my computer at home and not in a factory or on a construction site. When driving, I always carry a small card in my wallet next to my driver’s license that explains to law enforcement officers that my erratic driving may have been caused by a chronic brain disorder. Thank goodness I have never been forced to pull out my “Get out of jail free” card because I cannot walk a straight line even on my best days.

Thanks mostly to my wife’s ability to cover the major portion of our income and secure health care through her employer, finances have never been a major concern. Susan made certain our health care was covered last year when she created her own consulting firm. We are not looking forward to dealing with the bureaucracy when it comes time to transition to Medicare.

According to the National Multiple Sclerosis Society, there are 2.3 million people worldwide who suffer with MS. Research has been unable to determine any cause for the disease, and there are no cures. Medical advancements in the last few years have helped patients cope with symptoms, but there has been little progress toward reversing the loss of myelin around the nerves that transmit messages from the brain.

Many people have symptoms that are not identified as MS for many years. In fact, until the widespread acceptance of MRI imaging, the method for diagnosing the condition was the elimination of other conditions through a series of brutal tests.

For myself, I can think back to a time in college when I was even clumsier than normal, dropping my books, stumbling and forgetting important dates. Doctors hospitalized me at the age of 19 for a spinal tap to determine the cause of my awkward lack of balance. The diagnosis at that point was a pinched nerve. But those warning signs were quickly forgotten in a few weeks when I appeared to find my equilibrium.

Many people are quick to dismiss some of the early warning signs, like the feeling of pins and needles in your feet similar to when your legs are crossed too long or being tired all the time. Naps are a good thing, and I’ve learned to listen to my body and enjoy losing my eyes in the afternoon. But that is not by choice.

Issues with speech and swallowing are also common symptoms that people do not suspect as being a symptom for something more serious. For me, damaged portions of my brain have caused slurred speech. Ironically, my degree is in broadcast journalism. I would have been on disability 20 years ago if my career had taken me into radio or television.

A speech therapist taught me to slow my speech to help me enunciate. She also taught me to speak louder to help me articulate. But that did not work because people thought I was just yelling all the time.

Pain is a common complaint of people with MS. One lady I knew through a support group actually thought of having her legs amputated to eliminate the constant pain. Thankfully she did not follow through with her plans.

I was never much of drinker, but one cocktail is now more than enough for me to pass the car keys. I have also given up attempting to calculate the proper amount needed for a tip.

Many of my fellow patients have utilized prescriptions from their doctor to return to the altered state of mind they enjoyed during the ‘60s. Now that cannabis is legal, the thrill is gone but high times remain the norm.

My wife has always accused me of not being able to multitask, but I honestly cannot say if that is a result of MS or just not being very detail oriented. Lists have become an important part of my daily life, from a Honey-do list for chores around the house to simple trips to the grocery store.

There was a time that I would stand up on tables to voice my opposition to social injustice. Now I cannot trust myself to stand on the table or climb a ladder. My loss of memory is something else that can be blamed on either age or MS. Or both.

There have been numerous times when my daughter will blame my MS for my lack of control over my emotions. I’ve tried to explain to her that I am just a mean old man.

Anybody who knew me before I was diagnosed has not been surprised when I have tried to make light of the bleak prospects for my future. For example, I take great pride in the fact that I do not get seasick anymore. When I am aboard a boat filled with people turning green at the gills, I simply welcome them to the world that I live in every day. After my initial diagnosis, I realized that I could reach into a boiling pot of water to drain pasta without any pain. However, I forgot to realize that my skin would still turn red and form blisters.

When the director of the Washington Chapter of the national Multiple Sclerosis Society approached me and a friend about establishing monthly meetings for a self-help group, I was reluctant to participate until we agreed to name our little group the No Whiners. We now meet once a month at a local hospital to hear speakers who help us enhance the quality of our lives.

In one way I am thankful to MS. My wife and I made the decision to travel while I am still able to get around without a wheelchair. That has been a blessing.

When my doctor explained that a majority of my sensory losses would occur in the first five years after my diagnosis, I went out that day and purchased a sports car with a five-speed transmission. That was an expensive mistake.

When it came time to buy a new house when the kids were in high school, Susan and I limited our search to homes with a master bedroom on the main floor. Since then we have moved to a home filled with stairs and grandkids.

Modern medicine has limited the progression of my disease and healthy habits have given increased my chance to lead a long (and somewhat normal) life.

More importantly, I have been surrounded by an incredible support system, beginning with the self-help group organized by the National MS Society, understanding friends, compassionate children and a loving wife who never fails to amaze me. And I never did buy that cane.

Dan Aznoff is a freelance writer based in Mukilteo, Washington. He was a finalist for a Pulitzer Prize for his coverage of the toxic waste crisis and has received acclamation for his work in the areas of sustainable energy and the insurance industry. He is the author of three books that document colorful periods of history in Washington. He can be reached at [email protected].