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MDA’s award-winning bimonthly national magazine goes to everyone registered with MDA, as well as to MDA clinics, researchers and subscribers.
Quest publishes articles on all aspects of living with a neuromuscular disease, and updates on research findings. Quest’s circulation is 125,000.


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  Home> Publications > QUEST > QUEST Vol 11 No 3 May/June 2004
From Where I Sit

Sailing Off Into Paradise

by Kathy Wechsler

"I never see giving up sailing," said Jon Bloom of Orinda, Calif., who was introduced to sailing by his brother, Tim, some 20 years ago. "Even if Im not able to walk down the dock, somebody can drop my butt into a boat."

Bloom, 39, received a diagnosis of facioscapulohumeral muscular dystrophy in September but recalls having shoulder and hip weakness as far back as junior high school. Weakness in his right arm led him to seek a diagnosis.

Now Bloom has weakness in his face and lower legs as well as foot drop - the foot stays down after he pushes off while walking. His left arm remains stronger, so hes learned to work around the weakness in his right arm and use leverage to his advantage.

After Blooms diagnosis, his father, Edward Bloom, also received a diagnosis of FSHD but today has few noticeable symptoms.

"Dont let your disability automatically preclude you from trying to pursue something you want to do," Jon said.

 
Jon Bloom (left) and his brother, Tim, enjoy a ride on Risky. Photo by Mark Holtze
 

Setting Sail

Bloom sails in San Francisco Bay and on the coastal waters outside the bay, in the San Diego Harbor and offshore to the Channel Islands of Southern California.

He enjoys the technical challenge of sailing.

"In essence, you have to understand the effect of the wind and the angle of the wind in order to trim the sails and drive the boat as fast as possible," said Bloom, president of the Ed Jones Co., a business that manufactures police and fire badges.

"Its kind of this never-ending pursuit of being one with the boat because youre only able to achieve the optimal conditions for a short period of time and then they evade you."

Although he sometimes enjoys single-handed sailing for pleasure trips, Bloom typically sails double-handed, or with two people on the boat. He often sails with friends or his brother.

Or he may take his wife, Elisabeth, and kids, Patrick, 10, and Laura, 5, out for an afternoon of sailing on his 30-foot sailboat, Risky.

Besides sailing for fun, hes also passionate about racing.

The Ultimate Challenge

Jon and Tim, 37, participated this year in the Berkeley Yacht Club Mid-Winters, a four-race winter series.

In June, the brothers plan to enter the Coastal Cup, a 300-mile race from San Francisco to Santa Barbara. This will be 48 to 60 hours of nonstop, offshore racing in the windy and challenging waters of the California coast, "one of the nastiest stretches of water in the middle latitudes anywhere in the world."

Wanting the race to be about the journey instead of the finish time, the brothers decided to do the race double-handed, even though most boats will be larger, faster and fully crewed.

"Exhaustion, fatigue and sleep deprivation are much greater opponents than other boats heading south," Bloom said. "My goal is to finish the race safely."

Risky Business

Sailing, especially offshore sailing (technically, anything beyond 60 miles offshore), has many dangers. Falling overboard is always risky because the water is cold and hypothermia can set in.

"If were offshore, we use something thats known as jacklines, where we run nylon webbing from the front of the boat to the back of the boat and wear a harness and literally clip ourselves to the boat," said Bloom. "That way, if we slip and fall, the jackline will keep us from going out of the boat."

FSHD has increased Blooms risk of going overboard. Foot drop causes him to catch his toes on uneven surfaces, and sometimes stumble. Fatigue also plays a major role. With muscle weakness, he has to work extra hard to maneuver the sails, and fatigue increases the likelihood of injury.

"The wind changes, the current changes, the waves or the swells cause the boat to behave differently," said Bloom. 

"Its very tactile. Theres a constant give and take interplay between you and the boat."

Looking Ahead

If hes successful in Junes Coastal Cup, Blooms goal is to enter either the TransPac in 2005 or the Pacific Cup in 2006, both races from the West Coast to Hawaii.

"Feeling the wind, smelling the water, hearing the way the boats moving through the water theres a lot of sensory inputs that all combined are what the appeal is," he said of sailing.

"Its a part of who I am."

 
     
     
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