Compared to most, Carol Crouse has started cheerleading late in life. She can't help herself, she's sitting on the edge of her seat for the first time in 20 years.

Multiple Sclerosis put the Melvern Square woman in a wheelchair in 1990. For the last 10, she didn't sit in her living room because she wasn't able to get up from the sofa or the chair. Her legs had become painful lead weights and she could barely raise her right arm.

On December 18 Crouse flew to a private clinic in the United States and underwent a controversial treatment based on a November 2009 study on chronic cerebro-spinal venous insufficiency (CCVI) conducted by Dr. Paolo Zamboni.

Since her Liberation treatment a month ago, Crouse has noticed immediate improvements in her hearing and circulation. With effort she's regaining mobility and balance, and her pain is manageable. She can (with some assistance) walk 12 lengths of the pool in Greenwood and raise her right arm and wave it around.

Feels Great

“I want to go up to strangers in the grocery store and say, you don't know me but I feel really great,” she said. “If you know anybody with MS, you go home right now and tell them to get on a plane and get this treatment.”

These days Crouse is devoted to her new full time job -- getting back on her feet. She is practising physiotherapy about three times a week and is exercising at the Greenwood pool. She is sitting on the edge of her chair and can't wait to grab a walker.

One of the biggest changes is that Crouse is counting the improvements, rather than keeping track of  what she's losing. She has a growing list of 14 symptoms that are better, some on their own, some with effort ever since the treatment.

It took awhile for doctors to diagnose her condition. It all began with a clumsy phase when she was a teenager. She was having trouble with her knee, when her foot started turning inward. Doctors tried to correct it with a cast, but the cast broke.

This phase eventually passed and the problem was helped with physiotherapy. Over the years, she had more trouble walking. A fatigue settled over her.  Then, one day she was sitting at the dinner table and the world went out of sight, as her vision left.

Her sight eventually returned, but it was never the same. By that Christmas, she couldn't move her arm. As terrifying as it was, this flare-up turned out to be the one that gave her the diagnosis of Multiple Sclerosis.

‘Crappy Disease’

“It's a really crappy disease, but aren't they all?” she said. “You gotta fight it with everything you have. If you don't, it will kill you. This procedure is not a cure, but it is a great band aid.”

Crouse said she was the woman who was up and dressed with her housework done early just in case someone should drop in, “I never wanted to be caught in my pyjamas.”

By 2010, it was taking her all morning to get dressed. The relentless pain, her limited mobility and the debilitating fatigue caused her to need eight rests before she could get from her bed to the bathroom, and over to the breakfast table. A shower required at least one nap. 

“I wanted to crawl in a hole and pull it shut around me and go to sleep,” she said. ”People would see me and tell me how wonderful I looked. I wanted to say, I may look okay on the outside, but boy do my insides hurt.”

She stopped reading because she couldn't concentrate. She began losing words and thoughts in mid-sentence. In addition to the growing physical inertia, her mind was now slipping away in a soupy-fog.

If she needed groceries, or had a doctor's appointment, she prepared three days ahead, getting lots of rest. And then she needed three more days of sleep afterwards. She said she tried everything there was to try and now they were telling her to use morphine to manage her pain.

Final Option

“That was the final option. You need something in reserve for when the pain gets worse,” she said. “I was always the glass is half-full-girl, but I was empty and out of options.”

She began measuring the onset of days with how much more independence she could bear losing. Like many people, as the new year approached Crouse took stock of how her life is going and the thought of  another year terrified her.

Then a W-5 program aired last February about a new treatment for CCSVI called Liberation and raised the possibility that there may be help. Looking back now, Crouse said it seemed like a wild idea. Not only was it a lot of money, but if she had trouble getting to the grocery store, how could she travel outside the country?

But then Yvonne Anderson, a former neighbour and fellow MS sufferer, had the treatment and came to see her. This visit and changed everything. Crouse decided if it could stop the progression of her disease and helped lessen her pain, it would be worth it to try.

“Yvonne was doing things I know she was physically incapable of doing before,” she said. “I knew it was real. I saw the before and the after. It was real.”

Turning Around

Crouse remembers when her world started to turn around. She was lying on the table during the procedure, they had just removed the first blockage and nothing happened. As soon as they opened the second, she heard a crinkling sound by her ear. People began shouting and the sound of the equipment was deafening.

“I thought all this noise is making me crazy, why do they have to shout?” she said. “I didn't realize I had become deaf in that ear. It took me awhile to adjust to hearing again.”

Later in the recovery room, her husband was rubbing her feet and noticed they weren't their usual purple blocks of ice. They were a toasty warm, pink colour. And later she felt sensation in her left leg. Best of all, the pain was lessening and the impossible fatigue was lifting.

Crouse is quick to point out that while the procedure may have given her another chance, she's working hard to make it life-changing. Some things returned on their own, but she is doing everything she can to get stronger. She hopes to trade up her wheelchair for a walker this year.

“I've been given this opportunity to change my life around and I'm working very hard to take full advantage of it,” she said. “If the physiotherapist says 10 is good, then 15 is probably better if I can manage it. I'm working my tail off”

http://www.annapoliscountyspectator.ca/News/2011-01-25/article-2169573/Liberation/1?action=sendToFriend