Source: Canadian Chronicle Herald [Joel Jacobson BRIGHT SPOT]

JOHN McNULTY blesses each day he’s alive.

He could gripe every day, but that’s not his nature. He wants to get things done and improve the system while enjoying life.

The retired psychology professor and associate professor of medicine at Dalhousie University has multiple sclerosis. He lives, as comfortably as one with the neurological disease can, in his own home in central Halifax that’s equipped with most of what he needs to get around — a power wheelchair, stair lifts, grab bars and other aids.

Caregivers help him mornings and evenings. His wife and adult grandson lend a hand with meals and personal care.

It’s cost John thousands of dollars for his equipment and other assistance. He’s fortunate to have a health plan that covers some costs, and savings and borrowing power for the rest. He says he’s more fortunate that many people with MS living in their own homes.

"Many have nowhere to go for help," he says, having done thorough research on the issue and lobbied long and hard to government and the Multiple Sclerosis Society.

"There are programs for people with MS in nursing homes here, but this province and British Columbia are the only ones who don’t assist with equipment for the severely disabled at home. There’s a Red Cross equipment loan program on a short-term basis and limited support ($600) from the society during any one budget year. That’s it."

John was diagnosed at age 47 in 1981 and was mobile for 10 years until the disease crept forward and he had to use a cane. His condition worsened until, at 60, he retired early from Dalhousie. He worked at the Queen Elizabeth II Health Sciences Centre in Halifax until retiring at 65.

"I was always active. I was a scuba diver (much of his interest was in human underwater perception and performance and hyperbaric and undersea medicine) and that certainly helped me stay young," says John, who looks much younger than his 72 years.

"Activity certainly helped me avoid the difficulties of MS and to lead as normal a life as possible. MS affects people in different ways. My brain has not been affected, as it does others."

His brain and his typing fingers have certainly been active on behalf of others, although to little avail.

"When I see the needs of others who don’t have options, I write letters and briefs, hoping to create some action. I wrote every member of the legislature in May 2006 and received no response. I’ve always been a troublemaker, I guess, but I really observed the lack of assistance when I became part of an MS self-help group a few years ago."

Volunteers from the MS society were involved with the group, through which John met people living at home and wanting a reasonable lifestyle but without the finances to have it.

His battery-powered scooter to take him places he used to walk cost $3,500 and an $18,000 battery-powered wheelchair gives him independence at home. A porch wheelchair lift cost $6,000; about $4,000 in porch renovations enable him get him to his $26,000 refitted van capable of handling a wheelchair; an indoor stair lift set him back $3,700; and grab bars and other aids were $1,100. That’s more than $62,000, some of it a one-time cost. But most of the equipment will require maintenance or upgrading after a few years.

"Even things that are tax deductible have to be paid for initially before claims can be made," John says. "That’s almost impossible for many people."

Through it all he doesn’t complain about his MS. He can still feed himself, type on his keyboard, even though, he says, "I type with one hand now. But is that age or MS? I don’t really know."

Much of his scientific writings have been published. His last piece, coauthored with a dean at Harvard University, was published in 1997. Now he writes stories for his grandchildren based on animals he encountered while diving or surveying.

"The children like them and people have suggested I publish them, but I’m not there yet. Now I write mostly troublemaking stuff, like letters to the editor when I get pissed off about something."

He admits he’s never thought, "Why me?" but usually thinks, "Why not me?

"Who’s to say who gets MS and who doesn’t? I’m as likely as anyone else. I think it’s unfortunate, but I don’t resent it any more than getting old, and I have little chance of changing that. I guess my major concern with all of this is that people are being diagnosed at a younger age than I was and I wonder why more isn’t being done."

He thinks a moment. "With millions (of dollars) in research in the 25 years since I was diagnosed, only one thing, an interferon drug, has come out. Why isn’t there a cure already?

"Why can’t more be done for people with MS who want to remain in their own homes? That will certainly save the government money in the long run."

Contact Joel Jacobson via e-mail at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it , fax at 426-1158 or phone 902-426-0128.