Tue | Dec 18, 2018

The chilling effects of ALS

Published:Monday | August 25, 2014 | 12:00 AM
In this image from a video posted on Facebook, courtesy of the George W. Bush Presidential Center, former President George W. Bush participates in the ice bucket challenge with the help of his wife, Laura Bush, in Kenne-bunkport, Maine.

Jody-Anne Lawrence, Staff Reporter

By now, we are sure that you have seen the video, you may even have been challenged. Since the Ice Bucket Challenge began on social media on July 29 to benefit amyotrophic lateral sclerosis (ALS), it has gone viral. The ice bucket is reminiscent of the chilling disease and the support through this challenge is sound.

Neurologist at the University Hospital of the West Indies Dr Ivor Crandon told Flair that ALS is a disease that attacks the muscles and breaks down the motor functions of the body. An individual with ALS physically starts to slow down until they become immobile. This is something that Pia Baker witnessed happen to her father, Jeremiah Barrington Baker.

Her father was a very active man who enjoyed football and jogging along the Palisadoes strip. But then they began to notice a difference in his rhythm. Something was terribly wrong.

"He started to slow down. He realised that he was beginning to get winded. Then he realised he could no longer jog the same distance, he would have to walk some of it. Then he was unable to make the trip at all," Baker told Flair.

Everything seemed to happen so quickly. After visiting his doctor, he was not provided with an immediate answer. His lungs were checked and he was then referred to a cardiologist and other doctors, but there was never a conclusive diagnosis. No one could tell him what was happening to his body.

death sentence

But he was a fighter, and Baker was right there to fight alongside him. They started to look for doctors in the United States that might be able to help them, and flew to Miami in January 2007. Unfortunately, that mystery was the death sentence of ALS. But they were determined to fight for as long as they could.

The disease targeted his lungs first, which resulted in him having trouble breathing and being placed on a ventilator. When he returned to Jamaica, he was admitted to the hospital.

Baker had no intention at letting her father stay in the hospital until he passed away. She was advised by the hospital what she would need to take care of him, and after six months at the hospital, she took him home. "We knew if he did not use his muscles, the faster they would weaken, so we tried to put them to good use by having him ride a bicycle and maintain movement throughout the day. This worked for around two to three years," Baker said.

Baker watched as her father lost feelings in his toes, then legs, making him unable to walk, and then his hands. This was not the easiest thing to watch.

Helping my father was not a choice, he needed to be taken care of and I did not think that anyone could have done a better job. He raised me as a single parent and it took nothing out of me to give him the same care he gave me," Baker told Flair.

The experience brought them closer together, as her father had to depend on her for everything, from bathing, to helping him use the bathroom. Unfortunately, his fight with ALS ended on November 7, 2012. He was 56 years old.

One thing that she was grateful for was that this was not a painful disease. "He just lost function and this became frustrating, but it was not painful, and I am grateful he did not feel any pain," she said.

She has come to grips with his death, but the disease still affects many. The disease affects persons in different ways - but has the same end result - immobility and then death. There is no cure for ALS.

Crandon explained that they do not know what causes the disease nor determines how long each person might live, because some live up to the three years while others live as long as 10. However, the disease predominantly affects persons between the ages of 40 and 70. Dr Crandon is of the belief that Jamaica needs more support groups and facilities for people that are suffering from the disease.