To stress his analogy that the province's ALS sufferers are in a David and Goliath-like fight, Donald Penney purchased three slingshots for a news conference Monday.—Photo by Steve Bartlett/The Telegram

Taking on Goliath
ALS sufferer may end marriage to qualify for assistance

STEVE BARTLETT
The Telegram

Divorcing his wife of 30 years is an option Donald Penney may consider as his disease worsens.

"It's possible, very possible," said the Mount Pearl man who suffers from Amyotrophic Lateral Sclerosis, or ALS.

"It's possible," he said when reporters pressed him on it again later. "To make a point, I may just do it."

Penney, also director of communications for the provincial ALS group, made the comments during a news conference early Monday afternoon.

For himself and on behalf of the 23 others with his condition in the province, he is asking government for help.

He wants government to cover expenses incurred by people with the progressive neuro-muscular condition that is also known as Lou Gehrig's disease.

According to stats from the ALS Society of Canada, a person with the illness requires an average of $137,000 in equipment and nursing care costs can be 10 times that.

To illustrate the predicament such expenses put people in, Penney told the stories of two deceased ALS sufferers who struggled with the system for funding and answers.

He then turned to his own story.

Once his health deteriorates, Penney said his family could face drastic choices to cover the cost of items such as ramps, special beds and home care.

Divorcing his wife to lessen his family income and qualify for social assistance - and 100 per cent coverage, Penney stressed - is one option.

His other choices are moving to a province that pays ALS expenses for everyone, cashing his wife's retirement savings to fund his care and even something termed 'death hastening.'

The latter would see him refuse all medical intervention and suffering through the fatal disease without assistance.

Penney, who needed help tying his tie and buttoning his clothes before the news conference, said he is totally consumed with protecting his family from having to deal with such decisions. He also has two grown children.

He said things need to change so ALS sufferers can focus on enjoying what remains of their life, not worrying about what will happen to loved ones.

The system, he continued, makes families vulnerable and discriminates against those with progressive disabilities.

He said people either qualify for everything or for nothing.

"In fact," Penney said, "the system makes me more vulnerable than ALS ever will."

Along with covering the costs of care for everyone, he also asked that government co-ordinate the services it offers people with Lou Gehrig's.

He may see between 12 and 15 specialists from various health fields as his disease progresses, but he said there is little co-ordination between them and that makes it difficult for the patient.

He'd like to see an ALS clinic or centre established here. Every province - except Prince Edward Island and this one - has such a facility, he noted.

Penney compared the plight of ALS sufferers to the Biblical battle between David and Goliath.

He even placed slingshots in front of where he sat to emphasize that point.

"We're the Davids here," he said. "There's only 24 of us in the whole province."

Diagnosed in January 2005, Penney said he made a number of recommendations during a meeting with former Health minister Tom Osborne a few years back.

He said nothing has been done and he became frustrated enough to go public.

He acknowledged the upcoming provincial election helped in the timing of the decision to speak up.

"You think I'm ****** off?" he asked.

"Oh yeah, just a little bit."

Contacted for comment, Health Minister Ross Wiseman issued an e-mail statement.

He said government has made "significant investments" to improve health and community services, including enhancements to the Newfoundland and Labrador Prescription Drug Program, "which benefits patients with movement disorders."

"We will consider the needs of individuals with ALS, and all other needs that are presented to us, during our budgetary process," Wiseman stated.

sbartlett@thetelegram
http://www.thetelegram.com/index.cfm?sid=61406&sc=79