ALS and the value of membership

This article is more about a truly great member than about the disease that killed him: ALS, or amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. It is also about the lifelong friendships that develop between members and the great support we give each other.

ALS

French neurologist Jean-Martin Charcot discovered ALS in 1869. While ALS can affect anyone, anywhere, at any time, there are two different ways cases are categorized:

• For about 90% of all cases, there’s no known family history of the disease or presence of a genetic mutation linked to ALS.
• For 5-10% of all cases, there’s a known family history of the disease. This is often called familial ALS.

ALS is a type of motor neuron disease. As motor neurons degenerate and die, they stop sending messages to the muscles, which causes the muscles to weaken, start to twitch (fasciculations), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements.

Although the disease can strike at any age, symptoms most commonly develop between the ages of 55 and 75. Males are slightly more likely to develop ALS. However, as people age, the difference between the sexes disappears. ALS affects people of all races and ethnic backgrounds. Some studies suggest that military veterans are about one and a half to two times more likely to develop ALS, although the reason for this is unclear. Nearly all cases of ALS are considered sporadic. This means the disease seems to occur at random with no clearly associated risk factors or family history.

With no specific test for ALS, diagnosis is often made late in the disease state. As of this writing, there are two new treatments that can slow disease progression but only in the early stages. There is no cure. The average mortality is within five years.

Helping hands

I first met George Hallenbeck 36 years ago. He introduced himself after moving into Shippan, my neighborhood in Stamford, Connecticut, and offered to help me with anything I needed. It was not a hollow offer. He helped me and virtually anybody he ever met, often putting aside his own tasks and agendas. He would check on ill neighbors, and one time when a woman’s husband was out of town, he dropped everything to bring her to Mount Sinai Medical Center in New York City. Another time, during a post-hurricane flood, he went to affected houses with dewatering pumps, without knowing most of the residents he helped.

A year after introducing himself, George invited me to join Stamford Sail & Power Squadron/2. I am still a member to this day, and my closest friends are America’s Boating Club members.

Six years ago, I knew something was wrong with George. At first slowly and then more frequently, he started to develop unexplained symptoms and events. I sent him to a multitude of doctors, starting with pulmonary and cardiac physicians. A year ago, he had seen three different local neurologists before going to Yale where he was eventually diagnosed. He went to two more neurologists to confirm the diagnosis and see what could be done. By that time, it was too late to use one of the new drugs effectively, but he did try.

George’s case is typical of what happens to an ALS patient. He died on Saturday, March 11, 2023, leaving behind his wife, Grace; his brother, David; his son, Robbie; a sister; and two young grandchildren. His final wishes were to be dressed in his USPS uniform for the funeral and to donate his accumulated boating equipment and books to the squadrons.

Some of George’s most treasured accomplishments included teaching many boating safety courses as squadron educational officer and later as district educational officer. For many years, he served on Connecticut’s boating safety board and provided guidance to the group. He organized and developed our Maritime Mobile Service Identities program and the Boating Skills Virtual Trainer. He achieved the rank of rear commander, the highest rank a member can achieve without becoming a national bridge officer.

He ran many cruises for Larchmont Yacht Club and the Corinthians sailing association. However, he was happiest every summer cruising with Grace aboard his beloved boat, Great Gales. He looked forward to the cruise for months and prepared for it just as long.