Sunday January 21st 2018

A painful reminder

Jeff Donegan endures pain that most people couldn’t fathom.

He suffers from a condition so painful–trigeminal neuralgia (TN)–that its nickname is “the suicide disease” because of what it causes some sufferers to do.

“It’s the most painful thing I’ve every felt,” he says of the shooting pain that can be triggered by stress, shaving or even a cool breeze.

But debilitating pain from episodes of TN is not even Donegan’s biggest problem. What has him truly fearful is the progression of his multiple sclerosis (MS)–which is likely linked to the TN–and what it is doing to his eyesight and his ability to play with his three children.

The numbness that has taken over more than half his body also doesn’t compare to not being able to play with his kids.

“I’ll be in a wheelchair before I’m 50 or 60,” he said. “I can walk and play with my kids, and I am happy. But maybe 10 years from now I won’t have that. I’m petrified of that.”

What he is also petrified of is needles; something that can be a great challenge for an MS sufferer who has to inject himself frequently. And something that will prove to be a hurdle this weekend as Donegan is off to a clinic in Newport Beach, California to receive the controversial Liberation Treatment.

The treatment was designed by Italian surgeon Dr. Paolo Zamboni to open up blood flow for a condition he called chronic cerebrospinal venous insufficiency (CCSVI).

The idea behind the treatment is that some MS patients have narrow blood vessels or stenosis. The theory is that routine balloon angioplasty can help open up the blood vessels, increase blood flow and help relieve the symptoms of MS, long believed to be only a neurological condition.

Neurologists have dismissed the effectiveness of the treatment outright and few studies are under way. On Aug. 26, the Canadian Institutes of Health Research (CIHR) convened a meeting of leading MS experts in collaboration with the MS Society. At that time, CIHR representatives showed their skepticism of the connection between blood flow and MS and recommended baby steps forward.

Since that time, the MS Society has taken steps to encourage study of the treatment and has set aside $1 million for clinical trials, that is, if anyone ever develops and approves them in Canada.

The MS Society has defended its position as an advocate for patients based on the available science, which just isn’t there for Liberation Treatment. In an interview with the Times, a spokesperson for the society conceded that MS sufferers don’t want to wait for the process of studies and trials, which are actually being done faster than for most disease research.

“Even though they say this is incredibly quick, I understand people who are suffering with MS say this isn’t fast enough,” said Suzanne Jay, a spokesperson for the BC/Yukon division of the MS Society.

On Oct. 15, Manitoba’s health minister announced $500,000 will be set aside for future clinical trials to test the connection between MS and CCSVI.

Donegan is just 31 years old and he, like other MS sufferers who have had Liberation Treatment done, can’t wait for doctors to study what some patients report has worked. He said the doctors at the MS clinic are “pretty solidly against it,” but when his eyesight began to deteriorate further in August, he decided to look into the surgery.

He applied to a hospital in Poland, but a long waiting list discouraged him. He and his family don’t have a lot of money, but with support from some family members and a fundraiser held last week to help pay for the CCSVI testing, Donegan is ready to pay the approximately $13,000 it will cost for the surgery and the trip.

He also doesn’t understand the seeming reluctance on the part of the mainstream medical establishment to consider that relieving blocked veins could help with MS symptoms.

“I figure that if they find a blocked vein and they clear it and it doesn’t help my MS, I will still be happy,” he said. “That’s dangerous. I’m not taking the procedure believing that I’m going to be cured. If it helps, that’s wonderful. If I have a blocked vein, that’s even better. And if I go and nothing, well then, honestly, I sit right back where I am now.”

It is that sense of hope that has Donegan, like so many others, looking offshore to a treatment that they simply can’t receive in Canada.

While he is petrified of needles, that’s something he has to overcome to try to do something to halt the progression of his condition.

“If five years from now I go blind and I did nothing . . . I can’t not do something for fear of that.” he said.

As if Donegan’s pain and restrictions weren’t enough, the financial constraints on his family are only increasing as he was put on unpaid leave by his employer, something he is currently in the process of fighting.

But Donegan is a fighter, something his son Brendon recognized and expressed in a speech he gave two years ago to his Grade 6 class.

“Often I wonder why this has happened to him, to me and to my family,” Brendon said in the speech. “I lay awake thinking about it, about how some days he is unable to walk, others he walks with a cane, and some he walks like the dad I remember. He can no longer play sports, run, or even wrestle with me.

“In all, I love my father and I miss what we used to have. I always hear him say God gave him this disease because he knew he could beat it. If this is true, I guess God truly feels that I candle handle it to.”

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