MS exercise group at Jack Purcell Recreation Centre enjoys disability-friendly environment

By Louise Rachlis
Multiple sclerosis can be isolating, and the MS group at Jack Purcell is a way for those with MS to exercise and also to connect with each other.
“There are many psychological benefits,” says group member Rebecca Cooney, who also runs the MS liberation support group in Ottawa.
“Physiotherapist Joan Heard and I started the group about four years ago,” says Rebecca, who was also the first client. “It was at a time when we were looking for something in downtown Ottawa for people with MS after rehabilitation. We chose Jack Purcell, a fully accessible city facility with an adapted weight room and staff who are familiar with disabilities.

Nancy Bullis, the trainer who works with the program on Wednesdays, designs individual programs for each client.
Clients are invited to get a weight room membership so they can drop in to use the room on Monday and Friday mornings when a trainer is available to help them access equipment.
However, because many people with MS are heat-sensitive, the warm-water pool at Jack Purcell isn’t a benefit for them.
Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord (central nervous system). MS affects women more than men. While the disorder is most commonly diagnosed between ages 20 and 40, it can be seen at any age.
MS is caused by damage to the myelin sheath, the protective covering that surrounds nerve cells. When this nerve covering is damaged, nerve impulses are slowed down or stopped.
Symptoms vary, because the location and severity of each attack can be different. Because nerves in any part of the brain or spinal cord may be damaged, patients with multiple sclerosis can have symptoms in many parts of the body.
There is no known cure for multiple sclerosis at this time. However, there are therapies that may slow the disease. The goal of treatment is to control symptoms and help maintain a normal quality of life.
“We meet at Jack Purcell every Wednesday 11:45 to 1:15,” says Rebecca, “and now there is so much demand, we also have a class on Saturday mornings 10:30 to 12 with another trainer.”
There is opportunity to do a variety of core and strengthening exercises with low tech equipment such as therabands and wobble cushions, as well as parallel bars to practice balance exercises.
Clients are also encouraged to continue progressing through their physio exercises. Nancy meets with them individually and advises on their program. “There are instructions for practising at home and in wheelchairs. The last 15 minutes is a warm-down with the group together.”
There are usually 10 or 12 in the group. Volunteers help clients use equipment, spot them for balance activities and assist with their stretching. “Sometimes people with MS don’t feel safe exercising, and in this environment everyone feels safe. The volunteers are fantastic.”
Up until a year ago, people with MS and others could have physiotherapy covered by OHIP if their doctor recommended it. That has now been cut out, and so a lot of people can’t get the help they need, says Rebecca. That makes the group even more vital.
“With our aging population, it’s important for everyone to get proper exercise and physiotherapy, and it’s unfortunate that it’s no longer covered unless you’re in a long-term facility,” she says.
“It’s very disconcerting trying to exercise when you have MS and you’re alone. It’s not a good thing. Fortunately the group is able to help.”
To find out more about the MS group, or to volunteer, please call Jack Purcell Recreation Centre, 320 Jack Purcell Lane, just off Elgin Street, at 613-564-1050.

New convention centre hosts National Celiac Conference May 13th to 15th

By Louise Rachlis
When Betty Salewicz was one year old, she was extremely ill with digestive difficulties, a problem that was finally diagnosed as celiac disease.
The toddler was in hospital for many months and then put on the "banana diet" — the treatment at that time when the cause of celiac disease was not known.
She ate just a bowl of mashed bananas, three times a day.
When she was seven, she was taken off the diet and told she’d outgrown her problem.
It wasn’t until she was in her thirties and had given birth to her third child that she was once again diagnosed with celiac disease. By then, the cause was known, and the treatment was for her to follow a gluten free diet for the rest of her life.
Now 80, Betty has seen huge progress in diagnosis and understanding of the disease. She is a member of the Ottawa Chapter of the Celiac Association, which is hosting the 30th Annual National Conference of the Canadian Celiac Association in Ottawa, May 13th to 15th.. They will be one of the first organizations to hold an event in the new convention centre.
“Celiac disease is no longer considered a rare disease,” she says. “Studies have shown that it may affect as many as one in every 133 people in North America, over 90 per cent of whom are undiagnosed. It is treated by following a gluten free diet for life because we react to the gluten in wheat, rye and barley. It is an autoimmune disease, not an allergy.”
Celiac disease is a medical condition in which the absorptive surface of the small intestine is damaged by a number of proteins found in grains, and referred to collectively as ‘gluten’. This results in an inability of the body to absorb nutrients such as protein, fat, carbohydrates, vitamins, and minerals, which are necessary for good health.

We now suspect that approximately one per cent of the Canadian population is affected by celiac disease, and the rate is increasing. A wide range of symptoms may be present. Symptoms may appear together or singularly in children or adults. In general, the symptoms of untreated celiac disease indicate the presence of malabsorption because of the damaged small intestine.

Gluten is a collective term for proteins found in wheat, rye, and barley. It is the gluten in the flour that helps bread and other baked goods bind and prevents crumbling. This feature has made gluten widely used in the production of many processed and packaged foods.

At present there is no cure, but celiac disease is readily treated by following the gluten-free diet, and eating out is not the problem it once was. “More and more restaurants are serving gluten free foods,” says June Williams, the president of the Ottawa Chapter of the Canadian Celiac Association, who is looking forward to the May celiac disease conference.
“The biggest challenge is cross contamination,” she says. “One thing we learn as people with celiac disease is not to be shy about asking your server about the ingredients in the food you choose off the menu to make sure it is gluten free. They don’t mind, and many are eager to learn.”
The conference will feature a roster of expert speakers drawn from across North America. Among them are keynote speaker Dr. Daniel Leffler, of Harvard University, co-author of Real Life with Celiac Disease; Dr. Peter Green, Columbia University, co-author of Celiac Disease: a Hidden Epidemic; Dr. Jon Meddings, Vice Dean of the Faculty of Medicine, University of Calgary, and Dr. Ted Malahias, dentist, and frequent speaker on dental abnormalities in celiac disease.
“We are very excited to be hosting this conference,” says Mark Johnson, chair of the local publicity committee for the conference. “Delegates will hear the latest on the research, possible future treatment options, and more on how to cope with the disease.
”We extend a special invitation to Ottawa-area celiacs to avail themselves of this opportunity to learn. The wide array of gluten-free food that will be enjoyed makes it even more rewarding.”
As well as being active in the large support group, Betty is also part of a smaller group of eight or nine members who meet each month to discuss recipes and shopping for gluten free food. “We also go out together to restaurants, thereby spreading the word about gluten-free food. On one memorable occasion, we all showed up at noon at Colonnade Pizza and were served gluten-free pizza. What a wonderful treat that was!”
Among the benefits of membership in the Ottawa Chapter of the Canadian Celiac Association are a voice mailbox (613-786-1335) to ask questions about Celiac Disease, Dermatitis Herpetiformis and the gluten-free diet; four regular meetings a year in Ottawa, augmented by smaller meetings to provide support for the newly diagnosed; newsletters, literature, and sources of gluten-free products in the area. To join, call the voice mailbox and leave a message saying you want to be a member. Cost is $65, for which you will receive a hefty welcome package as well as a complimentary copy of the new book Celiac Disease for Dummies.
“The big problem we face in diagnosis is people who go on the diet before being tested,” says Quintin Wight of the Ottawa Chapter. "The gold standard is the blood test followed by an endoscopic biopsy. The blood tests used in Canada for the detection of celiac disease are extremely accurate, but when people who suspect they have celiac disease go on the diet first, it can interfere with later testing. The Canadian Celiac Association advises strongly against trial gluten-free diets prior to testing.”
“As there are 29 chapters across Canada, our turn to host the Annual National Conference does not come up very often and we really want to get the word out,” says Betty.
For more information on the conference or the Association, please visit www.celiac.ottawa.on.ca, or call (613) 786-1335.

Cyclists training for 2nd annual 270 km Ride to Turn the Tide September 5th to 7th

Ride supports Stephen Lewis Foundation’s
Grandmother to grandmother campaign

By Louise Rachlis


At last year’s inaugural Ride to Turn the Tide event, Sue Cousineau, the first Chair of the Grassroot Grannies in Kanata, was the driver of the Granny Mobile.

“My role was to prep the groups who were providing support for us along the route,” she says. “They billeted us or gave us lunch, all along the route. Once our rides went through, I stayed back and talked to the group and showed slide shows and videos of the Stephen Lewis Foundation work in Africa.” Sue went to Africa in 2008 herself and her visuals came from her own trip.

This year’s she’ll be cycling the route which covers 270 kilometres over three days.
The Ride to Turn the Tide cycle trip supports the grandmother to grandmother campaign of the Stephen Lewis Foundation.

Last year’s goal for the 19 cyclists of Ride to Turn the Tide was $10,000.

“We asked our cyclists to raise $500 each, and most support people chose to as well,” says Ride organizer Nancy Hough, “but 23 people raised just under $30,000, exceeding all expectations.”

This year, the goal for the event has been set at $30,000.

Two vehicles provide support to the cyclists along the route, liaise with the granny and church groups in towns along the way and carry bags.
Cyclists come from Grassroot Grannies, and two bike clubs: the Kanata Nepean Bicycle Club and the Cross Canada Cycling Tours Society, a non-profit group centred in Vancouver with affiliates across Canada.

Women on Wheels, a 30-year-old group, formed the core of the Grassroot Grannies when the group began, and so cycling was a natural fit when they started Ride to Turn the Tide.


“Our group is made up of 20 women, most, but not all, from Kanata, and more than just the WOW women now,” says Nancy. “Most of the women share a passion for gardening, hence the first and annual fundraiser, held on Mother's Day weekend, is a plant sale which usually raises about $8,000. The BBB ‘breakfast, books, bijoux,’ is held early in October and has been going for two years.”

Nancy was an original member of the Grassroot Grannies. In November 2007 she and her husband were cycling with a group in Cuba. They met two women from Victoria who were members of the Victoria Grandmothers for Africa and they had just finished their first three-day bike tour. “By the end of the trip we were friends and I had pummelled them with questions about their ride.”

The following spring Nancy did some research by contacting granny groups in the area with the idea of doing a similar ride here. In September of 2009 she made a proposal to the Grassroot Grannies which was accepted. Their first Ride to Turn the Tide took place last September.

This year's Ride to Turn the Tide will run September 7th, 8th, and 9th. “We will start and end at the new Bushtukah store in Kanata, a very exciting development.”

Their hosts along the way are the same as last year except for their first evening in Perth.

“In 2010, on the first night we stayed in the Perth Plaza Motel and we found this a bonding experience for our cyclists who had an impromptu 'tailgate' party in the parking lot and got to know each other better before we headed off to the Presbyterian Church. The second night, the billeting in Metcalfe by Grannies All About Kids was wonderful.”

They have enough cyclists already for this year, but welcome donations. Donors can give cash along the route, or donate electronically to sponsor a particular rider or the team overall. Their event page is on www.grassrootgrannies.com.

Ottawa women help raise over $40,000 for Parkinson Society

By Louise Rachlis
Two local women who climbed Kilimanjaro as a fundraising project for Parkinson Society Canada talked about their climb at the annual general meeting and strawberry social of Parkinson Society Ottawa.
Reta Currie and Sandy Bookalam helped to raise over $40,000 for Parkinson’s across the country, including over $18,000 for the Ottawa organization.
In 2009, Reta Currie had a fantasy of climbing Mount Kilimanjaro. She also had a dear friend diagnosed with Parkinson’s. She looked after him for a few months, and he got on medication and was able to do all the things he wanted to do.
Sandy works in biochemistry at the Ottawa Hospital and she had a friend with Parkinson’s, so she was glad to come on board for the climb.
Reta got in touch with Dennise Taylor-Gilhen, executive director of Parkinson Society Ottawa, and then she started her fundraising through a variety show for her business network group.
Sandy sold 50/50 draws and baskets.
Others on the climb were from across the country, including four nurses (one who is living with Parkinson’s herself), and a lab technologist.
To get in shape, Sandy did boot camp for six months, three times a week. Reta did a lot of distance walking. “It was important to walk slowly, to adjust to the altitude,” she says.
On the climb, they walked up 1,100 feet every day, summiting February 14th. They left base camp at 6:15 a.m. in the worst snowstorm in years. “Getting to the top was exhilarating, but we couldn’t see a thing. It was really treacherous and other groups turned back.”
It took them nine hours to reach the summit, and three hours to get back. On the way down, Sandy fell and tore her shoulder, but she persevered and finished the climb.
The AGM was held at the Ron Kolbus Lakeside Centre at Britannia Park June 27th, with strawberry treats provided by Leatherworks Catering.
Newly elected chair Sprague Plato appreciated the opportunity to speak to many people with Parkinson’s and their caregivers during the course of the meeting. “I was both saddened by the challenges many of them face on a daily basis, and impressed by their positive and even courageous attitude towards the future,” he says. “Virtually everyone I spoke to also expressed their deep appreciation for the Parkinson Society of Ottawa and its efforts on their behalf.”
As for himself, “because of Parkinson’s, I’ve found another community to be part of. As well as helping ourselves, we’re also helping those that come after us to age with grace and dignity.”
For information on Parkinson Society Ottawa, please view www.parkinsons.ca or call 613-722-9238.