01/29/2012 0 Comments Contact Our News Editors

Susan Hanna has read an eight-page pamphlet on Huntington's disease. She knows that at the start, the brain disorder causes clumsiness and fidgeting.

The difficulties grow. Speech is slurred. Attention slides. Chewing and swallowing are difficult and weight is lost.

Susan sees what it is doing to her husband Ric, 65. She lives it.

"I'll give you an example," she said, sitting in the cafe at the Mendel Art Gallery. "It's Sept. 7, my birthday. It was 30 degrees that day. I was out. Ric went on his bike to the mall to find me a birthday present - flowers or something. He didn't have to get me anything, but that's the type of guy he is.

"When I came home, I noticed his bike was gone. My dad was visiting from B.C. and I asked him. He didn't know where Ric had gone. I went down the route I thought he used to go to the mall and didn't find him."

She received a call from hospital. Although Ric was OK, riding a bike in the heat and being dehydrated wiped him out. Because he has advanced Huntington's and can't talk, he couldn't say he needed help. He couldn't ride his bike home either.

Ric was diagnosed with Huntington's disease in 2000. His ability degenerates. There is no cure. He is now in the Sherbrooke Community Centre on the east side of the city. Susan is in their home in Lawson Heights.

"What I miss," she said, "is Ric is no longer able to put his arm around me.

"He doesn't see the sleepless nights, the tears at bedtime, the toll it takes on me. Part of my strength is he's a good man and husband. Knowing what he has given me it's easy to be loyal and reciprocate."

Twelve years ago when Ric was in his early 50s, Susan knew he was having problems. She saw the signs. A distance runner who ranked in the top in his age group, his running style changed. His times slowed and not just because of age.

At work, he wasn't the Ric people knew.

His work involved going to schools and helping students with special needs. He could recommend a visual aid to use or how to manage their bus schedule, whatever the students needed to develop independence. He met some of these students three times a week, others once a month. He went to several schools every day, finding the work more fulfilling than his previous job as a physed teacher.

By having Huntington's, he loses touch with people.

The results of a blood test in 2000 confirmed the disease. Huntington's is genetic. His sister has it - same as his father.

"He lost his job," Susan said of Ric. "He lost his (driver's) licence. He lost his ability to compete. He lost his speech. I could go on and on."

As Ric changes so does Susan. She has become firm and forceful about certain things, ready to make a stand. She wasn't that way before. When Ric was in hospital last fall, not eating well and losing weight, three doctors talked with Susan in his room and said he should be tube fed.

"I don't think so," she said. "I'm here. If I have to feed him I will."

She did.

The other day on the pedestrian and cycling path of the University Bridge, a man she knows stopped to say he appreciates what she is doing. He said he is going through a similar situation with his wife, not Huntington's, but emotionally draining. Susan realizes we all have challenges.

There are friends for her and Ric to lean on. They also have two sons, Christopher and Thomas. She can turn to a small support group. Yet she does much of the journey alone.

"I'm doing the best for him I can," she said. "I'll tell you another story. This was in September in 2010. He usually leaves me a note about where he is going. When I got home he wasn't there. As I was preparing supper at 5 he still wasn't there. It was getting dark and he's out in his singlet and shorts.

"Finally he came home, shaking with fatigue. I was livid. I started slamming cupboard doors."

She gave directions. She huffed and puffed. This was her way of venting steam while being stressed. Susan knows she has limits in caring for Ric. She can't do it all.

Before his disease she worked her schedule around his. Now it's reversed. She does a lot for Ric, but needs time of her own. She goes to school. She bikes. She gardens in the yard. She travels.

"I have good things going on in my life," she said. "I think I'm successful in doing the best for him that I can. He definitely knows he has lost so much independence of movement; to initiate activity and go where he wants to go."

He used to run for miles. Now he depends on others to wheel him from floor to floor at the Sherbrooke Centre.

Ric recedes. In a way, Susan grows. They do it together.