Sun | Oct 21, 2018

Ice Bucket Challenge dedicated to dead wife - Ice Bucket Challenge for a real ALS victim

Published:Tuesday | August 26, 2014 | 12:00 AM
Robert Lee's wife was diagnosed with ALS in 2000. He takes the Ice Bucket Challenge in her memory.
Robert Lee's wife was diagnosed with ALS in 2000. - Carl Gilchrist photos

Carl Gilchrist, Gleaner Writer

When Robert Lee's wife was diagnosed with ALS in 2000, he made a conscious decision to put his business ventures on hold so he could care for her.

He cared for her for more than 13 years, and he, more than anyone else, understands what she went through during those years, before she departed last year.

The journey has become the foundation of a soon-to-be published book, by Lee, that highlights the couple's love for each other and how he himself managed to cope while doing everything possible for his wife.

The book will also help to draw attention to ALS, which is the next journey Lee has now embarked on. He wants to bring attention to the disease, of which a lot of people in Jamaica seem not to have been aware before the global advent of the ALS Ice Bucket Challenge.

Raising awareness

Lee is happy for the attention the challenge is bringing to the disease and hopes to use it to raise awareness in Jamaica.

"I've been challenged to do this by people because I've been associated with ALS through my wife," Lee told The Gleaner.

"For 13 years, I was her primary caregiver, so I have a front-row seat on what this disease is and we want to bring more awareness, especially to Jamaica. Most people don't know what this disease is. I know a few people in Jamaica that have it and nobody can really explain anything to them. It's relatively unknown in a sense, there is no (known) cure, nobody knows how it is contracted or how it came about."

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that affects nerve cells in the brain and spinal cord. It is characterised by deterioration of muscles, difficulty in speaking, swallowing and breathing.

After the early symptoms, victims will eventually not be able to walk or use their arms and hands and may lose the ability to speak and swallow food. Patients may become totally paralysed in the latter stages.

The disease is known to affect persons mostly between 40 and 60 years of age.

"I've been personally challenged to do the ALS Ice Bucket Challenge, so I'm going to do it down by the river," Lee said, hours before being 'baptised' in icy water.

The location was Irie River at Bonham Spring, near Exchange in Ocho Rios.

It will be an ongoing effort and it is hoped that the venue will become the unofficial ALS Ice Bucket Challenge location in Jamaica.

"It's a very scenic place to do it. We would like to make it a weekend event where companies will come," said Lee. "The challenge brings more awareness, and more awareness brings more funds to the ALS Association, so they can do research to find a cure for this disease."

Lee, in the meantime, is working to establish a database of persons with the disease in Jamaica in an effort to draw attention and get assistance for them.