Michael Abraham battles rare disease
Through thick and thin: Michael Abraham (right) and wife, Eleanor.
Through thick and thin: Michael Abraham (right) and wife, Eleanor.

… with full support of his family 

In 2009, Michael Anthony Abraham, A.A, a renowned son of the Rupununi, was strumming his guitar at an event marking the centennial anniversary of the Roman Catholic Church in the region when his guitar pick fell out of his hand.

He stopped, bent down to retrieve the pick with his right hand when he realised his fingers were not closing around the item. He had to seek help.

It was the early signs of amyotrophic lateral sclerosis or ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord and today remains without a cure since its cause (s) remain(s) unknown. It is also referred to as ‘Lou Gehrig’s Disease”, after an American baseball player who played for the New York Yankees. Gehrig’s career came to an end after he was diagnosed with the ailment. The disease forced him to retire at 36, and was the cause of his death in 1938.

More recently, awareness to the disease was made famous globally between 2014 and 2015 by the ‘Ice-Bucket Challenge,’ an exercise in which participants would pour ice-cold buckets of water over their heads.

Abraham and his family are familiar with the Ice –Bucket Challenge. More so, they have become familiar with the challenges they face daily as a result of the ailment.

(Courtesy of the ALS Association)

These days, the 70-year-old sits and watches television. The former parliamentarian who represented the then Opposition The United Force (TUF) from 1978-1992, follows current affairs via the newspaper but someone always has to be by his side to assist him in opening the pages.” I consider him relatively lucky, because he does not suffer any pain,” his wife Eleanor said.

She told Guyana Chronicle that in 2009 after her husband developed a lack of movement in his right hand, his shoulders also started to weaken. Several tests and a surgery for carpel tunnel syndrome were performed on his hands after they both showed signs of weakness.

Later, during the last quarter of 2014, following an operation on his hands at the Georgetown Medical Centre, the doctors assumed that his condition would improve at least by February the following year. This was not the case. Everyone was puzzled. Maybe because ALS is such a rare disease that detection was difficult.

WHAT EXACTLY IS ALS?

According to the ALS Association, the disease affects nerve cells in the brain and the spinal cord. “Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to death,” the organisation said on its website.

(courtesy of the ALS Association)

Once the disease takes effect on a human being, he or she loses the ability to walk, dress, write, speak, swallow and breathe, shortening the life span. It was noted that although the life expectancy after diagnosis is three to five years for the patient, he /she can live as much as five years and beyond.

Based on research conducted on population studies, a little over 5,000 people in the US are diagnosed with ALS each year. At 15 new cases daily, it is estimated there are more than 20,000 Americans with the disease at any given time.

Database records in the US indicate that 60 per cent of the people with ALS in the system are men and 93 per cent of patients in the database are Caucasian. Of note, the ALS Association said that most people who develop ALS are between ages 40 and 70, with an average age of 55 at the time of diagnosis.

FINALLY DIAGNOSED  

After travelling to Brazil in 2014 for more tests which led to no answer on Abraham’s condition, the family was searching desperately for any hint of a diagnosis. As such they contacted a Dr Crandon, a neurologist at the Balwant Singh Hospital. He was the first person who suggested that Abraham may have the “motor neuron disease,” another term which used to describe ALS.

Abraham travelled to the US in March 2015 and that month confirmation came after a visit to a clinic in Miami. “They tested everything and that’s when we knew for sure it is ALS,” his wife said.

Progressively, between 2009 to 2015 Abraham lost movement in a few of his limbs and was confined to a wheel chair during the latter years when he was diagnosed with ALS. “Around 2016 to 2017 he lost movement in all his limbs,” his wife said. Today, he is rapidly losing his voice.

Michael Abraham is a proud advocate of indigenous rights.

“He got very thin and it’s quite a lot, but I’m here,” his wife said. On a 24-hour basis someone monitors her husband’s condition. While he does not experience any pain, the family would take him to local doctors for colds or breathing ailments.

RECENT DEVELOPMENTS

Recently, a team of doctors wanted to discuss Abraham’s case since they could not determine what was wrong , prior to his diagnosis. And doctors in the medical field here in Guyana told this publication that the patient can only be treated for ailments associated with the disease since there is no cure. But there are some recent developments.

On September 26, this year, the day Abraham celebrated his 70th birthday, the official blog of the ALS Association reported that testing of a pill, called ibudilast or MN-166, which can impact inflammation in the brain and spinal cord has seen positive feedback from the United States Food and Drug Administration (FDA). This was based on tests performed by California-based biopharmaceutical company MedicNova on several persons suffering from ALS.

“There is evidence that neuroinflammation accompanies motor neuron death in ALS. Over 20 years ago, ibudilast was approved in Japan to treat post-stroke complications and asthma,” the report said. MedicNova plans to move ahead with another phase of testing based on the FDA feedback.

COMFORT IN THE INTERNET

This information may definitely bring comfort to the Abraham’s family. His wife partakes in regular conversations on a group-chat called ‘ALS’ on social media platform, Facebook. She said that she recognises that there are others around the world, who are in pain while the families of other patients provide regular updates and information on the disease such as findings and research for a cure.

“Most people confuse his condition with a stroke,” Eleanor said. “That is totally not the case, he has nothing that involves pain,” she said.

She said the family is trying their best to ensure her husband gets all the care he needs. “The neurologist said all we can do for him is to try to keep him comfortable,” Eleanor said as her husband sat nearby.

“He still listens to his country and western music, Marty Robbins and others so we always have hope,” she added with hints of positivism in her voice.


 

Signs of symptoms of ALS.(Video courtesy of the ALS Association)

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