Dunchurch woman died from little-known condition, now her husband would like to warn others

Now, following the death of his wife last year, Michael would like to make people aware of the little-known illness that claimed his wife, and reach out to her friends, who may be wondering what happened to her.

Michael Beale met Jackie when they both played trombone in the Dunchurch Brass Band – Jackie was a popular figure at Harris School.

They were married in St Peter’s Church in Dunchurch, and Jackie worked as a telephonist at the AEI in Rugby before the couple’s first child was born in 1971, with the family later moving to the Leicester area for work.

Michael said he began noticing signs that Jackie was changing. He said: “The first thing we noticed was that her voice changed from being well spoken to slurring and using ‘back street’ language.

“Then her top lip had gone and she couldn’t use a straw. Her breathing sounded terrible at night, and she began to have difficulty in lifting anything.”

Jackie’s GP suspected she had sinus problems.

“She lost a lot of friends and stopped going out. Her illness affected the muscles in her face - I think her facial expression made people think she didn’t like them,” Michael added.

Things began to change when Michael received a call from a police sergeant last year to tell him that his wife had been badly injured falling over.

Jackie was taken to hospital and for a long time, doctors were confused as to what was wrong with her – until a consultant quizzed Michael and ascertained that Jackie was suffering from myotonic dystrophy – a genetic neuromuscular condition for which there is no cure.

After receiving care in several hospitals, Jackie died last year.

Myotonic dystrophy is a genetic condition which causes progressive muscle weakness and wasting, states Muscular Dystrophy UK.

“It typically affects muscles of movement and commonly the electrical conduction system of the heart, breathing muscles, swallowing muscles, bowels, lens of the eye and brain. The age when symptoms start varies a lot,” the organisation adds.

All but one of the couple’s children have been untouched by the condition. Gareth, their second son, shows some symptoms and lives in a supported community in North Yorkshire he greatly enjoys.

Michael would like to contact one of Jackie’s friends, Melanie Dickens. If Melanie would like to get in touch, she is asked to contact the reporter who wrote this story.

Visit www.musculardystrophyuk.org to learn more about the condition.