Local woman shares her story of living with ALS

By Katrina Squazzin/Contributing Writer

When Nancy Haddock was diagnosed with ALS in September 2010, her husband made a vow to care for her and tend to all of her needs. Three years later, it is a promise he continues to fulfill.

Haddock, 72, has Amyotrophic Lateral Sclerosis.  The illness, more commonly known as Lou Gehrig’s disease, destroys motor neurons and leaves voluntary muscles paralyzed.  The cause is unknown and there is no cure.

“I was in denial,” said Haddock about receiving the diagnosis.  “It took me a while to admit that that’s what it was because I thought ‘I can’t have ALS.’  I knew people who had had it and I thought ‘that wouldn’t happen to me,’ but it did.”

The disease has left Haddock with function of only two fingers on her right hand, which she uses to control her wheelchair; and 20% lung capacity. She uses a device that puts air into the lungs, called a bipap, throughout the day and while she sleeps.  The only basic functions she can preform are talking and swallowing.

Her paralysis has left her unable to do many things she used to enjoy, including travelling, visiting family, and needle work.

Her husband, Bob, has since taken over the domestic duties, although she jokingly disclosed that his skills in the kitchen are not comparable to what hers use to be.

“My husband does all the housework, he does the laundry, he does everything … He had never done anything like that before, but when I was diagnosed, he said ‘I will look after you.’”

Many people have publicly taken notice to the deep devotion and compassion that Bob has for his wife.

“We have had people come over to us and say to my husband, ‘I commend you for the way you are looking after your wife,’” she said.  “A woman one day walked over and said, ‘Your husband is so good to you’ …  For a long time we wouldn’t accept help; Bob did it all.”

Haddock now also receives support from ALS Windsor and Community Care Access Centre.  She praises both organizations for their help with care and funding.

ALS Windsor contributed towards the cost of Haddock’s wheelchair and bathroom lift while CCAC provides palliative care.

Haddock is also extremely thankful to her daughter, Vicki, for providing constant support and “always being there.”

She also said the support she receives from members of the community is truly moving.

“Little children have opened the door and that’s special, when a child will do something like that,” said Haddock.  “We go to Smitty’s restaurant all the time and they are amazing.  When we get there, they have our table set up with coffee and water and they have the chair pulled away, so I can get my wheelchair in.”

Although Haddock receives ongoing support from her family and people in the community, she believes that much more needs to be done to raise awareness.

“I think I want more people to be aware of not just people like me with ALS, but all handicap people so that they can get out and do stuff and not be stuck in their houses,” she said.

The number of deaths caused by ALS is more than twice the number caused by cystic fibrosis and multiple sclerosis combined, according to ALS Windsor co-ordinator Sharon Colman.  The disease kills two or three Canadians every day and there are currently 30 known people living with ALS in the Chatham-Kent, Windsor/Essex area.

“I don’t think there is enough awareness about this disease and that’s why I wanted to make sure it gets out there, because more people are being diagnosed,” she said.

Haddock also says that her diagnosis has made her realize that many handicap resources are not truly handicap friendly. During a recent trip to the Chatham Cineplex with her family, Haddock said that she noticed one of the handicap washroom doors opened from the wrong way. Haddock was also unable to get her eye examination done because there was no wheelchair access in the building.

‘It’s amazing what you run into that is supposed to be for handicap and it isn’t, and more needs to be done,” she said.  “When we go out, people look at me and say ‘you are taking this very well,’ but they only see this smile on your face, they don’t see what you’re going through.”

The ninth annual ALS Windsor Walk will take place Sept. 15 at Sandpoint Park in east Windsor.  All of the profits will be used to fund research and provide services and equipment to ALS patients in the Windsor/Essex and Chatham-Kent area.  Pledge sheets can be found at www.alswindsor.ca.

“Until you go through it, and your family goes through it, I don’t think you fully realize just what it’s like,” said Haddock.  “I would never in my lifetime thought I would have gotten ALS, but you don’t have a choice and if I can do something to help one person, it will have been worth it.”