newsletter summer 2010

Telephone : 416‐922‐6065 • email : [email protected] • Fax : 416‐922‐7538

Chair’s Report

The Spokesmaster

Since our last newsletter we have successfully wrapped up our two major fundraising and Ms awareness events; the Walk and the Carnation campaign. It takes many wonderful volun‐teers to make these events happen, thank you to all of you who made things happen. The Walk committee, headed by Alison Foreman from the MS Society, was comprised of Vinnie Wong, Lise Amyotte,Victor Chen, Savita Bhimsen, Christeena Samuel, Jeff Scott, Hilje Armstrong and myself. In addition, special thanks go to Richard Fujimoto and Rob van Velzen for their hard work Walk weekend. The Carnation Campaign was efficiently Co‐Chaired by Hilje Armstrong and Savita Bhimsen. CCSVI continues to be a topic of much discussion. The MS So‐ciety of Canada is calling on the government to provide $10 million for research into chronic cerebrospinal venous insuffi‐ciency and MS. The request for funding comes as Canadians with MS continue to seek diagnostics and treatment for CCSVI elsewhere, paying out‐of‐pocket for tests and experimental therapies that could be provided in Canada. Regular updates can be found at www.mssociety.ca . Thanks and much appreciation go to Shishee Dhillon for her years of Board service as Volunteer Director. She has done an amazing job, and has retired from this position to focus on her career. We wish Shishee all the best.

Inside this issue:

Chairs Report

1

Carnation Campaign

2

Research Update 4

Ask the Expert 5

Confessions of a Desperate MSer

8

Upcoming Events 10

MS Walk 6

MS Resources 9

York East Chapter ‐ MS Society of Canada

Summer 2010 The spokesmaster provides information on services, activities and people of interest to the members of the Multiple Sclerosis Society of Canada – York East Chapter.

(continued on next page)

PO Box 64614 • 4721 Highway #7 East • Markham, ON • L3R 0M9

In early Spring we were joined on the Board by Ankit Shah and Cassandra Belo. Ankit is very interested in developing the position of Volunteer Director, and Cas‐sandra will focus on the role of Research Director. Welcome to Ankit and Cassan‐dra. We are having our June meeting and then breaking for the summer, but our Client Services portfolio, in the capable hands of Jeff Scott, will continue actively serving our clients. Have a great summer,

Jan van Velzen

June 2010

The 2010 MS Carnation Campaign has come to a close and co‐chairs Hilje Armstrong and Savita Bhimsen are happy to report that this year’s campaign was a success with a net profit of over $2,000.00!

Advanced sales were steady, participation was great at American Express on Friday May 7th and sales were constant at Markville Mall on Satur‐day May 8th.

Many thanks to Donna Sardone, who has organ‐ized our event at American Express for 5 years, for promoting and recruiting a group of com‐pany volunteers to assist us with on‐site sales. This year, sales at the McNabb Street Head office and a second location on Micro Court totalled $1,358.00.

A number of businesses, churches and restau‐rants in the Markham/Stouffville area also par‐ticipated in this year’s campaign. Together, they helped us raise another $1,446.00 in flower sales. We even had a local high school come on board. Bur Oak Secondary School participated this year and are looking forward to joining us again next year. Student sales were so good that all the carnations were purchased by the end of the first lunch period. To top it all off, they even stuffed our coin boxes with just over $38 worth of donations. We are touched at the generosity of the students at Bur Oak and grateful for the interest and the commitment they showed to

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(continued from cover) Carnation Campaign Results

our cause.

Sales at Markville Mall were similar to last year at $1,297.00. Every last flower was sold without any discounting. Advanced sales and Amex sales were so successful that our quantity of flowers for Saturday was re‐duced considerably, but it worked out per‐fectly. Despite ordering more potted carna‐tions than the year before, they still were the first to sell out. You can be sure that we’ll order even more of them for next year.

Thank you so much to all the volunteers on a variety of tasks including the planning, sorting, the delivery of orders, the set up

3 MS Society—York East Chapter

and take down and the sales events them‐selves. Each job is vital to make the cam‐paign a success as we promote awareness of Multiple Sclerosis in our community. Con‐gratulations to everyone on your hard work and a job well done! Special thanks goes to former co‐chair Rita Berzins for all of her guidance in the planning stages of the cam‐paign.

If you would like to volunteer next year, or involve your company with advance sales or an on‐site event, please contact us via the Chapter phone number or website.

4 The Spokesmaster

March 1, 2010

They’re some of the most highly pre‐scribed drugs in the country and now they’re being explored as a part of a possi‐ble combination treatment for MS pa‐tients.

Statins have long been prescribed to treat people with high cholesterol, or those at risk for heart attacks. Now however, the popular medication is being investigated as a combination therapy for those using interferon beta‐1a treatment for relaps‐ing‐remitting multiple sclerosis.

Evidence from recent studies suggest that statins may have anti‐inflammatory bene‐fits and could be therapeutic in immune‐related disorders like multiple sclerosis.

A recent study reviewed the effects of low‐dose atorvastatin in combination with high‐dose interferon beta‐1a in patients who showed a low response rate to the interferon treatment on its own.

After a two‐year trial period, the study group on the combination therapy showed a better result in MRIs for brain lesions

than the group on interferon beta treatment alone.

The study suggests that patients with low response rates to interferon beta therapy, may benefit from the use of prescribed statins as a subsidiary medical therapy to their interferon beta‐1a treatment.

The findings were also discussed at the American Academy of Neurology annual meeting, held in Toronto in April. Neurologists there were hopeful of the possible role statins may one day play in the treatment of relapsing‐remitting MS.

You have questions? We have answers.

www.MSanswers.ca

Combination Therapy May Prove Helpful in Treatment of Multiple Sclerosis

Research Update

Photo by Andrzej Gdula

The Spokesmaster

Ask the Exper t


Q. :

When should steroid intervention be used to fight against an attack? Does it make a difference when I start the steroid treatment?

A :

Sometimes neurologists use high dose ster‐oids to try to shorten an MS relapse or attack. The steroids work to settle inflammation. Very high doses of steroids are used, usually for 3 to 5 days (prednisone by mouth or methylprednisolone through an IV).

Such high doses have a lot of side effects: the most severe and most common are psychiatric – people may feel manic or very

depressed, or irritable, they usually can’t sleep for the time they are on the steroids. Rarely, people can get psychotic. The steroids also cause water retention and rare possibility of a hip problem.

Many of the long‐term effects of the steroids are avoided, by using such high doses of steroids for a short period of time. Steroids don’t improve the recovery from a relapse any better than if a person didn’t take the steroids. So, a person will achieve the same amount of recovery from a relapse whether or not they have taken steroids. The steroids just help to shorten the duration of time the relapse occurs for (which is variable from days to weeks to months).

So, the rule that is commonly used by neu‐rologists is if the attack is limiting your daily functioning to the point that you are finding it difficult to cope, then taking steroids may help. Theoretically, it is better to start the steroids while you are worsening with your relapse symptoms or if you have plateau’d in the relapse symptoms.

If you are already improving, then usually you will be coping better with daily activities at that point. “Good” inflammation helps in repair of the myelin when the relapse symptoms are improving, so theoretically, steroids could be impairing the inflammation that is trying to repair the lesion, although it has never been proven.

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2010 Markham - Stouffville Markham - Stouffville


Visit our website at MSsociety.ca for more photos

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Twenty five years ago when I was diagnosed with multiple sclerosis I couldn't have imagined I would end up as disabled as I am. I walk with a walker and get around out‐side on a mobility scooter. I was okay for many years but the last five have been very troubling. I am happily married and I was lucky enough to have two great daughters (17 and 12). Recently there has been a very positive development in the treatment of MS, discov‐ered by a researcher in Italy. He discovered a blockage in the veins of people with MS. It is called Chronic Cerebral Spinal Venous Insufficiency (CCSVI) and affects about 90 percent of people with MS. This came to my attention on Nov. 14, 2009 through a TV news show called W5. I watched it 5 times because I just couldn't believe that my mira‐cle had finally happened. It showed people walking after many years of using canes or wheelchairs. After a few days of feeling positive and relieved I started to think about how this news may have received by the MS Society, neurologists, drug companies and the medical community in general. I imagined a lot of meetings and realized everyone would have to take a stand on how to proceed. People in similar situations as myself formed websites and the communications began. Many people have decided they are not willing to wait for this amazing treatment and some have gone to other countries where the treatment is available – for a fee. Luckily a vascular surgeon in Barrie, Ont. took it upon himself to get the training to do the echo doppler on his MS patients and saw first hand how effective the angioplasty treatment was when he performed it on six of his patients. He believes that if a patient has block‐age in any of their veins it should be treated, just like heart patients receive treatment for blockages. This has been met by much controversy by the medical community and MS patients have been told to continue with their current medications and to be pa‐tient. I was patient for six months but now I am running out of patience. I am only one attack or fall away from ending up in a wheelchair full time and that presents a whole slew of problems (attendant care, upgrades in mobility equipment, changes to make my home more accessible).

Confessions of a Desperate Mser Confessions of a Desperate Mser

Sue Baiden


People are reporting a range of changes in their symptoms from very small to miraculous. These are the list of changes; better mobility, less numbness, better or complete bladder control, improved swallowing, less or no fatigue, an over‐all feeling of wellness. All this information has actually brought out a lot of emotions that I have suppressed for years. I have coped with MS by having a positive atti‐tude, setting goals for myself and always saying I am okay, accepting my mobility losses and try‐ing to move on. Dare I dream about walking outside again, being able to go places that I could not access before, stay awake the whole day, stay up past 10 pm, sit at the table and have dinner, go to a restaurant and not have to stay on my scooter, go out without having to think about where the washrooms are, drive again, get a job! I have not forgotten about how this will affect others; the two teenagers at the MS clinic I go to who could no longer even speak, those who have invisible symptoms but suffer as well, those who are affected financially because of their in‐ability to work, those parents who have to care for their children with MS, those patients that can no longer look after themselves and end up in a seniors home, people who have to sit by and watch their loved ones slowly deteriorate. I also feel very lucky and whenever I feel very down I always hear or see something tragic that makes me feel fortunate and it reminds me to suck it up and move on.

visit MSsociety.ca/ccsvi For the latest CCSVI news

I don't have a lot of fight left in me but with people like Dr Sandy McDonald (Barrie Vascular Imaging) out there fight‐ing for us I feel like this will happen. I confess I have MS and I am desperate. I have not written this article to get sym‐pathy but to make help people under‐stand what some people with MS are faced with and to explain that we are fac‐ing to try and get the new vein therapy that could change our lives.

Sue Baiden has been a member for many years and is also the former editor of the York East Chapter newsletter .

Dancap Productions Joins the Fight Against MS

– they can help in the fight to end MS. The Jersey Boys and Dancap productions have announced that they are part-nering with the MS Society of Canada to help raise funds for the society. Theatre goers simply have to purchase tickets giving the special offer “MS FUND” and $5 will be donated to the MS Society of Canada.

Dancap currently has discounted tickets on sale for the Jersey Boys. The fundraiser offer will also include any tickets purchased for Miss Saigon which is on stage in July and South Pacific, which starts in the middle of Au-gust.

This summer theatre lovers can do more than just catch a great performance

Purchase tickets now and a portion of the proceeds will benefit the Multiple Sclerosis Society of Canada Begin your Rewarding Broadway ExperienceTM with Dancap Productions


Upcoming Events

Markham Village Music Festival http://www.markham‐festival.org/

Our chapter will once again be setting up a booth at the Markham Village Music Festival this year on Saturday June 19th. Come join us for the best in local music, delicious international foods and ABBA Gold Live (@ 2:30pm on Main St. Markham at Robinson St.)

visit endMS.ca today

A&W Cruisin’ for a Cause Day One dollar from every Teen Burger sold on Au‐gust 26th will be donated to the MS Society. In addition to Teen Burger sales, paper car cutouts will be sold for $1 and coin box dona‐tions will be collected throughout the month of August.

Board of Directors

Social Action

Research Advocate Cassandra Belo

Public Relations Vincent Wong

Chapter Secretary Christeena Samuel

Member At Large Savita Bhimsen

Walk Committee Member and Hilje Armstrong Co‐Chair Carnation Campaign

Medical Advisor Dr. Caroline Geenen

Past Chairperson Margaret Gaukel

Chapter Chairperson Jan van Velzen & Walk Chairperson

Client Services Jeff Scott

Treasurer Bert Duncan

Volunteer Director

Disclaimer

The opinions expressed in the articles contained within are those of the authors and do not necessarily reflect those of The Spokesmaster or of the Multiple Sclerosis Society of Canada. Articles on products or services are for information only and should not be seen as endorsements. Your submissions are encouraged.

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The MS Society—York East chapter would like to thank The FSA Group for their continued support and for publishing The Spokesmaster at no cost to the chapter, the society or its members.

Do you have photos to share? A story to share? Some time to spare?

Share your photos and stories with us at [email protected], or volunteer to help out at a future event and meet some of your fellow members. We’d love to see you!

Hope you all have a most wonderful summer,

The Board of Directors

MS Society of Canada, York East Chapter

newsletter summer 2010

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