When flu season comes around again we’re met with the usual hail of encouragement to get our immunizations, and in Alberta fewer than half of us do.
For one former Westlock man who contracted H1N1 in December 2013, failing to heed that warning has had a life-changing result that goes beyond influenza.
Lance McNamara developed a rare condition known as Guillain Barre Syndrome (GBS), a neurological disorder similar to ALS, which has resulted in severe paralysis.
He has been in the Miseracordia Community Hospital in Edmonton for 10 months, where he has regained some of the use of his body but is still paralyzed from the shoulders down and is unable to speak.
With the help of a speech language pathologist, he told The Westlock News that he had not been too concerned about H1N1 when he first heard about it, and had never heard of GBS either.
It has, however, had an immeasurable impact on his life. Where once the 27-year-old man had typical hopes, dreams and aspirations, the short-term goal these days is simply being able to get out of hospital and back home.
A dinner-and-show fundraiser is being held in Westlock Oct. 25 to help him make his home handicap-accessible for when he’s ready to get out of the hospital, something Lance said is very positive for him.
“It makes me proud to be from Westlock,” he said.
Lance’s brother Ryan said the aim of the fundraiser is to get as much money as possible to put towards the required improvements in his home that will allow him to get out of the hospital — a wheelchair he would be able to operate through bursts of air in a straw, a ramp, and some other amenities to make the home more accessible.
“From what we can figure out right now it’s easily $50,000 we’re looking at just to get him a ramp and some basic mobility,” he said.
Dr. Kathryn Koliaska, a Medical Officer of Health for the Westlock area, said GBS is a very rare condition, with roughly one to two new cases per 100,000 people per year, and can range in severity from mild to severe.
“The way it happens is a person’s immune system attacks his or her own nervous system, and damaging the nervous system causes the muscle weakness,” she said.
As for the prognosis for patients, it’s difficult to say given there are many sub-types GBS and they’re not very well known. And the specific causes and triggers aren’t clearly understood either.
“The science isn’t perfectly there,” Koliaska said.
“We do know there are some common triggers out there, typically infection, whether that would be viral or bacterial infection.”
Infections such as influenza are one of the more common triggers, and she recommends people take the time to get their influenza vaccines.
Koliaska noted there may be evidence of some connection between getting an influenza immunization and contracting GBS, as well, but said the evidence isn’t clear — it relates to some post-vaccine surveillance in connection to the 1976 strain of the swine flu, and while there may be a correlation no causal relationship has been established.
“We can say with a lot of confidence that the risk of getting GBS from influenza is much greater than the risk of getting GBS from an influenza vaccine,” she said.
For the McNamara family, they hope to get the message out that influenza immunization can reduce the risk of this condition that has had such a major impact on their lives.
“It’s pretty traumatic to see somebody’s whole life change, basically overnight, and from there it gets even more frustrating,” Ryan said. “It feels like there’s no resolution. We’re 10 months into this process and Lance is still in the hospital, still struggling to talk and unable to move for the most part.”
There have been some significant improvements in that time, however. For the first several months, Lance was much less communicative than he is now, and he is slowly but steadily regaining some limited use of his body.
That said, there is a long, long way to go and the path forward is not an easy one. There are some supports available once Lance can get into the Glenrose Rehabilitation Hospital, but he’s still waiting to get in.
Once he’s in the Glenrose, there would be access to some rehabilitation equipment — but only once he’s in.
“There are ways to apply for grants for wheelchairs and things like that through the federal government, but to do that you have to give up short-term disability and it’s not beneficial for him to give up short-term disability until it runs out,” Ryan said.
That is why the family thought it important to take matters into their own hands and try to raise some of the money sooner to get Lance home — it could significantly improve his quality of life.
And at this point, Lance’s outlook is not entirely positive when he describes his typical day and the way he copes.
“I lay around for physiotherapy and lay around and stare at the clock,” he said.
“I cry a lot.”
For Ryan, seeing the kind of support from the community that has already come in is great.
People have made cash donations, provided silent-auction items for the fundraiser and are very supportive in buying tickets as well.
“It’s been pretty incredible to see that this town we grew up in and spent most of our lives in has really come to rally around Lance,” he said.
The evening will include dinner, speeches from a doctor, Ryan and Lance’s former employer, as well as some live music and a DJ. Tickets are $40 each and can be purchased at the Flower Shoppe in Westlock.
