Helen's Story

I am writing in sadness but with the intent of expressing hope for all those who have been diagnosed with MG. I do not have myasthenia, but I had a wonderful marriage of 56 years with someone who did.

Helen died last October, at the age of 86. We had a few rough times, but she had a full life despite the problems. I’d like to share some of the specific problems as well as the accomplishments of my wife.

Receiving her diagnosis

Helen was in grad school in Boston, and she was very tired. She was trying to finish her thesis, studying for exams, it was the middle of winter, and she had a cold. Of course, she was tired, she reasoned, and so was everyone else.

However, excessive tiredness, droopy eyes, and a few times of slurred speech prompted her to see her PCP. He told us later that he had only seen one myasthenic before but was immediately suspicious. He referred her to a neurologist at Mass General and the diagnosis was indeed myasthenia gravis.

Getting a second opinion

Somehow, she managed to finish her degree and then flew to San Francisco for a second opinion. California confirmed the diagnosis and wanted to do a thymectomy. Boston said no surgery.

The doctors compromised on a course of radiation therapy, and she subsequently went through a 3-month regime of radiation to the thymus. This was followed by 3 more months of trying to find the right dosage of Mestinon (pyridostigmine bromide). From this point on she made slow but steady progress, and we met not long afterward.

Her experience with treatment

Mestinon is a good place to start. When we met, Helen was taking as many as 28 60 mg tablets a day, plus a 180 mg time-span tablet at night. Over time this came down to between 12 and 15 tablets per day and she continued at this rate throughout her life.

I should note that the Mestinon could not be scheduled. Only she knew how much and when it was needed, and she quickly learned to self-medicate.

Hospitalizations over the years

Except for the initial diagnosis period, Helen was never hospitalized for Myasthenia. However, over the years she had multiple hospitalizations for other reasons and the myasthenia was always a complicating factor.

Respiratory problems were always a big concern, and anything that required anesthesia was always major. Fortunately, the word “myasthenia” always commands attention, and we always got the best of care. Hospital staff were generally reluctant to allow her to self-medicate, but always gave in with a little encouragement from her neurologist.

Her triggers

Helen was allergic to any kind of alcohol. Any food cooked in wine, beer, or certainly the hard stuff always resulted in a severe gastrointestinal reaction like being overdosed on mestinon. We never knew if this was due to myasthenia or an interaction with mestinon but she had to avoid alcohol at all costs. Do not allow the waiter to tell you the alcohol has all been cooked away.

Summertime was Helen's enemy. She thrived in cold weather (although she did not particularly like the cold) but summer was always difficult. Central air conditioning was a must. It is worth noting that although Helen lived in the US from the time she was 10 years old, she was born and spent the first 10 years of her life in the Philippines. Despite growing up in a tropical climate, the heat was her enemy.

I've heard many people say, "I'm so hungry I'm weak." In Helen's case, this was true. We always traveled with snacks, even to a simple thing like a movie. If she got hungry she got weak.

Maintaining her career

Helen was a psychotherapist. Initially, she worked for an agency whose hours started at 8:00 AM. She woke each morning at 5 in order to be there on time. Each day I brought her coffee with 3 60 mg mestinon tablets.

She spent about 1 hour drinking the coffee and taking the 3 pills and was then functional enough to have breakfast. After breakfast, she took 2 more 60 mg tablets and was then able to shower and dress for work. I should point out that Helen was one of the most disciplined people I have ever known. We both credited this discipline for her doing as well as she always did.

Making the decision to start a family

At the age of 33, we decided we wanted a baby. We both begged, pleaded, and cajoled her neurologist as well as her gynecologist/obstetrician until they agreed. The first pregnancy ended in miscarriage, but she was pregnant again 3 months later. This time with success.

Helen, who was 5'2" and weighed 100 pounds gave birth to a 7-pound 11-ounce baby boy. We, as well as her doctors, were concerned that he might be born with myasthenia. I'm happy to report that there has never been a sign of myasthenia. As a matter of fact, at the age of 50, he completed a full triathlon (if you don't know that's a 2-and-a-half-mile swim; a 120-mile bike ride, and a full 26-mile run).

In addition to the joy of a baby in our life, the pregnancy had a positive effect on the myasthenia. All the symptoms remained, but her dependency on Mestinon was reduced to about half the prior dosage.

A fulfilling life

Shortly after our son was born, Helen opened a private practice with an office in our home. She continued to see clients there until the age of 70.

Following retirement, all I can say is we had a good life. We were in Europe multiple times, drove cross country 4 times, and saw lots of Broadway plays. Helen died of heart failure for reasons having nothing to do with myasthenia. I had 56 good years with her, and never once thought of myself as a caregiver.