2011 connection - ms society...ms connection page 3 spring 2011 new medical update memo on march 9,...

MS Connection Spring 2011

Spring2011

A newsletter for the Kamloops & Area Chapter of the MS Society of CanadaOffice Location:#180-546 St Paul St Kamloops, BC V2C 5T1Phone: 250-314-0773 or 1-888-304-6622

Find the MS Society online!

Our Chapter Website:www.mssociety.ca/kamloops

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www.twitter.com/ MSSocietyCanada

ConnectionIn This Issue Staff Update

Chapter News Fundraising News

MS Society of Canada NewsCommunity ServicesWellness ProgramsOne in Three by Heidi RedlCalendar of Events

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worldmsday.org

mswalks.caMay 15, 2011

mscando.org


Wow time flies… it has already been over a year since I joined the MS Society, Kamloops Chapter and what a year it has been! I knew coming into this position that I had a lot to learn and was very excited to learn more about MS and the people in our

community living with the disease each day. I cannot believe how rewarding it has been meeting so many clients, donors, volunteers and fundraisers that take part in maintaining and using the services offered here.

I have now seen firsthand how devastating the disease can be, I have also seen such a great deal of positivity and strength in those fighting it every day and I am truly in awe of their courage.

It has been and exciting and unprecedented year to have joined the MS Society. CCSVI was the top medical news story of 2010, really putting MS at the forefront of every ones minds. It has created awareness not only amongst the general population, but also brought MS into the political spotlight. The federal government recently announced they will fund a National Monitoring System of MS patients, as well, multiple provinces have announced funding for further research of CCSVI. The seven studies funded by the MS Society of Canada and the National MS Society are underway; combined government financial support for further research could speed up the answers we are all waiting for.

Next up, the Multiple Sclerosis Society of Canada marks the month of May as MS Awareness Month. Across the country, our collective aim is to increase awareness about multiple sclerosis; inform the public about the MS Society’s services and mission; and to engage new and existing supporters in our efforts to end MS. Here at the Kamloops and Area Chapter, May MS Awareness Month is very busy. We will have a display at Royal Inland Hospital May 2nd and 3rd, host our

first one day Can Do MS – Jumpstart program on May 7th and of course our biggest fundraising event of the year the Scotiabank MS Walk on May 15th. I invite you to join us in any or all festivities and programs happening.

I have been honoured to have met many of you and heard your stories, and I want to thank you all for making this past year such a welcoming and rewarding one for me.

Staff Update

Recent support from Our Community

General Donations:Kamloops Hot Yoga - Karma Yoga ClassSun Life Financial

In Memory Of:Gordan R. Hay Corby-Ann Fehr

Sunday, September 11, 2011

Register online at msbiketours.com

Natasha Chisholm, Chapter Manager and Fundraising Coordinator


New Medical Update Memo

On March 9, 2011, Health Canada approved Gilenya® (fingolimod) capsules, the first oral disease-modifying therapy developed for relapsing-remitting MS.

Gilenya (prounounced Jil-EN-ee-ah) has been approved for use in people who have tried one or more MS therapies, but are unresponsive or intolerant to them. It is indicated for use as a monotherapy for the treatment of people with the relapsing-remitting form of MS to reduce the frequency of clinical exacerbations (relapses) and to delay the progression of physical disability. Health Canada’s approval is based on results from two large-scale placebo-controlled clinical trials, each with over 1,200 participants.

Read the entire Medical Update Memo at: http://mssociety.ca/en/research/medmmo_20110310.htm

Staff

Natasha Chisholm, Chapter Manager & Fund-raising CoordinatorCyndi Lion, Community Services CoordinatorLeanne Fisher, Administration & Com-munications AssistantTrina Radford, Chapter Manager & Fundraising Coordinator (on leave)

Board of Directors

Dr. Paul Dagg, ChairMike O’Reilly, Vice ChairRoss Parkin, TreasurerJohn Grover, SecretaryBritt AntoniukDoug ClemisLee EnnisRay HarrisonJoan HughesDarlene KellyMarcia Popoff Geri Rines

Make a Difference in the Kamloops and Area Chapter Office - Volunteer!We are currently looking to recruit an office volunteer for a few hours a week or every other week. We are looking for someone who is comfortable answering phones, making calls, and has basic computer skills. If you are interested in volunteering please contact Natasha at the office 250-314-0773 or [email protected]

Kamloops and Area Chapter SurveyOur Chapter wide survey is now complete and we are working on summarizing the information provided. Please stay tuned for the official results. Thank you to everyone who completed the survey and provided us with valuable feedback.

MS Read-A-Thon UpdateWe’ve had four amazing schools complete the MS Read-A-Thon so far: Aberdeen Elementary, Abderdeen Hills Montessori, Bert Edwards Science and Technology School and Parkcrest Elementary. Cache Creek and a class at Westsyde Secondary will be finishing soon. Thank you to all of the great readers and fundraisers! If you know a school who might be interested in joining the MS Read-A-Thon for the 2011-2012 year, contact Leanne at 250-314-0773 or [email protected].

Chapter News

Volunteer for the MS Walk!Volunteers are also still needed for many areas of the MS Walk including set-up, take-down, food assistance, route marshalls and more. If you can help, please contact us at 250-314-0773.


Fundraising News

Comedy for a Cause – ms soCiety of Canada fundraiserOur Comedy for a Cause event was a huge success! A SELL OUT, raising just over $3150 for the Kamloops and Area Chapter. The comedians Sam Easton and Ivan Decker were great, and everyone enjoyed the show! It was a night of laughter and all for such a great cause.

A special thanks to all of those that attended, our wonderful partners McCracken Station Pub and Yuk Yuk’s, and the amazing support we received from the community in donations.

JOIN US SUNDAY, MAY 15, 2011!Interior Savings Centre - Riverside Park 400 Lorne StreetCheck in 8-9:30amWarm-up 9:40-9:50amWalk starts 10:00am Closing Ceremony 12:00pm

Register now at mswalks.ca or call 250-314-0773

New for 2011! Team MS Tent VillageAny teams that raise $5000+ or register 25+ participants by May 1st will get their own tent at the MS Walk. This is a great way to set up home base for team members. Tables and chairs will be provided, and teams can decorate and customize their tent to highlight their team.

Not on a team? It’s easy to join Team MS. Just get 4 family members, co-workers or friends together, choose a team captain and team name. Then register your team and members at mswalks.ca.


MS Society of Canada News

2011 MS Research Teleconference with Dr. Paul O’Connor, National Scientific and Clinical Advisor to the MS Society of Canada

The Multiple Sclerosis Society of Canada is proud to announce the ninth annual MS Research Teleconference taking place on Wednesday May 11, from 6:00 to 7:30 p.m., Eastern Daylight Time (3:00-4:30 PST).

This year’s guest speaker will be Dr. Paul O’Connor, national scientific and clinical advisor to the MS Society. He is also the director of the MS Clinic at St. Michael’s Hospital in Toronto. This is your chance to hear the latest on MS research as well as to have your questions answered by one of Canada’s leading neurologists. The teleconference will follow a talk-show format. A short presentation will be followed by a moderated question and-answer section.

Participants have the option to submit a question through the online registration form, by way of Twitter (@MSSocietyCanada) or through Facebook (Facebook.com/MSSocietyCanada).

How to register:1. Online at http://mssociety.ca/teleconf_research/2. Call 416-922-6600 or 1-866-922-6065 extension 3177.

For more details, contact: Claudette Villena Phone: (416) 922-6600 or 1-866-922-6065 ext 3177 E-mail: [email protected]

If you prefer to participate in this Research Teleconference event at the Kamloops Chapter office, please contact Cyndi for details or to register.

Dr. O’Connor is known for his expertise in clinical trials and has been principal investigator of a number of MS research studies in the past decade, publishing well over 100 peer-reviewed articles on MS research.

MS Society welcomes new national monitoring system

Ottawa – March 23, 2011 – The Multiple Sclerosis Society of Canada welcomes the federal government’s announcement of a national monitoring system that will capture information to help identify disease patterns and track treatments and long-term outcomes for people living with MS.

The system announced today will be developed by the Canadian Institute for Health Infor-mation (CIHI) in close collaboration with the Canadian Network of MS Clinics and the MS Society of Canada. Federal funding through the Public Health Agency of Canada will sup-port its development. Representatives of people living with MS, clinical and technical experts from across Canada and provincial and territorial governments will provide input into the design and development of the sys-tem.

Visit: http://mssociety.ca/en/releases/nr_20110323.htm for the full article.


Community Services

Winter Family EventEveryone had a great time at the Valentine’s Party at Ruckers Family Fun Centre on Febru-ary 11th. Our next family event will be scheduled sometime over the summer months and details will be announced via Newsflash and on our website.

Our family events are open to parents and grandparents with MS and their children or grandchildren under 18. If you are on our family phone list and/or receive our MS News-flashes, you will be notified in advance of these fun family events. Please contact the of-fice if you would like to be added to these lists.

Self Help Groups

Chase Regular monthly meetings occur on the third Monday of each month at 10am in the Chase Health Centre conference room. Please call Georgie at 250-679-3505 or Lorraine at 250-679-8844 for more information.

Williams LakeThis group meets on Tuesday evenings every 6 weeks. Meetings are held at 5:30pm in Education Room A/B at Deni House. Contact Christina Price at 250-305-6008 (after 5pm) or via email at [email protected] for more information.

The MS Summer Camp is an opportunity for children and teens with MS to meet at the banks of the beautiful Big Rideau Lake for a week long adventure full of fun and new friends. The camp also allows participants to enjoy a break from the stress associat-ed with MS, in a supportive environment.

For more information or to register online: http://mssociety.ca/en/help/camp.htm

To register by phone, please contact 416-922-6065 extension 3135.


Living with MS

On Thursday, April 28th (12-1) we are welcoming guest speaker, Erna Stassen, Physiotherapist from Focus on Health Physiotherapy.

Erna Stassen is a physiotherapist registered with the College of Physiotherapists of British Columbia and a member of the Canadian Physiotherapy Association. Erna has received her training in The Netherlands, and graduated with a Bachelor of Science in Physical Therapy from the University of Utrecht in 1998. She also has a Bachelor of Science in Kinesiology en Posture Therapy from the University of Amsterdam in 1990. The last 20 years of work experience in the medical field, include private practice, rehabilitation center, hospital, home and community care, extended care and Early Intervention and School Aged Children. She has extensive experience working in a multi-disciplinary team and has special interest in treatment of chronic disease and chronic pain, and specializes in functional rehabilitation. To further develop her skills she has taken a wide variety of postgraduate education in the areas of neurological dysfunctions, developmental dysfunctions, exercise physiology, and how to support life style changes.

She has worked with people with MS in acute care, rehabilitation and home and community care. Currently she works with MS clients at their residences and in a warm water therapy pool. She has just started a monthly group at the Hamlets through the MS society.

Hamlets

Cyndi Lion, Community Services Coordinator, visits residents with MS in a casual group setting at the Hamlets on the 2nd Wednesday of each month. Individual visits can also be arranged by request if this is preferred to a group discussion. Residents of Hamlets

interested in individual appointments can contact Cyndi at the office, or have a family member or health professional call on their behalf.

Of note, family members are always welcome to join in the group discussion, and individual appointments can also be arranged for family members.

Cyndi will be participating in the First Annual Wellness Fair at the Hamlets on May 27th (10-4), so if you’d like to meet her, or have any MS related questions, please look for the MS booth at the Fair.

Carepartners

Carepartners can participate in our Living with MS group, Social Lunch, Wellness Programs, and other special workshops and events. Of note, the Jumpstart workshop on May 7th will include a session specifically for support partners (carepartners). This is a great opportunity to meet and share with other carepartners, so we hope you will attend.

It is important to remind carepartners that they can access 1-1 services by phone, email, or in person. Services for Carepartners includes MS education, referrals, and supportive counselling. If there is enough interest, we will resume regular carepartner specific education and/or support group meetings.

www.facebook.com/mssocietykamloops

Community Services

For any questions regarding the in-formation on the Community Services pages or to register for an event, please contact Cyndi Lion at 250-314-0773 or [email protected].


Spring Outreach

It is time again for the annual outreach to our rural Chapter areas. Session details will be shared closer to the dates, but in the meantime, mark your calendars if you live in (or near) these outreach communities and wish to participate.

Merritt: Monday, May 30th, 10:30am-12:00pm – Nicola Valley Health Centre, 3451 Voght St. – Conference Room

Chase: Tuesday, May 31st, 10:30am-12:00pm – Chase Health Centre, 825 Thompson Ave – Multipurpose Room

Lillooet: Monday, June 13th, 11:30am-12:30pm – Lillooet District Hospital, 951 Murray St. – Board Room.

Clearwater: Monday, June 20th, 11:00am-12:30 – Dr. Helmcken Memorial Hospital – Room B

Barriere: Monday, June 20th, 2:00-3:30pm – Location TBA

Social lunch –Venue changes for 2011

The social lunch venue has changed a few times since the New Year. Most recently we have held the lunch at Denny’s on the North Shore, and the group seemed to enjoy the food and location. As long as everyone is happy at Denny’s, it looks like this will be our lunch venue for the next couple months anyway. This casual group meets the first Wednesday of each month at 12:30 pm and is open to all people with MS and their partners/family members. Participants cover the cost of their own lunch, and occasionally we have prize draws for participants.

Find our Events Calendar Online at:www.mssociety.ca/kamloops

Wellness Programs

We are pleased to announce that our new wellness classes are well underway, and those who have participated in the new classes have shared positive feedback about them so far.

Yoga for MS Wellness with Cylynne Edgelow Abdullah at St Paul’s Cathedral 360 Nicola Street. Upcoming classes:

May 16, 2011 10:30-11:45amMay 27, 2011 4:15-5:30pmJune 10, 2011 4:15-5:30pmJune 20, 2011 10:30-11:45am

Hamlets Movement for Wellness with Erna Stassen, Physiotherapist. Upcoming Classes:

May 2, 2011 10:45-11:45amJune 6, 2011 10:45-11:45am

Both of these classes are offered free of charge to people with MS and/or their carepartners. It is not required that you are a current MS Society member to access these wellness classes. If you do wish to become a member, or want to check on your membership status, please contact the office.

Further, if you have a limited income and are seeking fitness opportunities beyond what we are offering in our Wellness Program, you may want to consider applying for a subsidized membership at the YMCA-YWCA. Additionally, the City of Kamloops has funding available (ARCH) to individuals and families with financial challenges. You can contact Cyndi to discuss these options.

Community Services

For any questions regarding the in-formation on the Community Services pages or to register for an event, please contact Cyndi Lion at 250-314-0773 or [email protected].


Wellness ProgramsCan Do Multiple Sclerosis One-Day Jumpstart ProgramThe Can Do Jumpstart program is fast approaching and if you are interested in attending, you will want to register ASAP to secure a spot. Call or e-mail Ron Wheeler at Can Do MS to register at no charge at 1-800-367-3101 ext. 1277 or [email protected]

This event is open to all people with MS and/or carepartners of people with MS. If you are unsure if this event is suitable for you, please contact Ron Wheeler (contact information above) or Cyndi Lion at the Chapter office to discuss program details, and any concerns that you may have.

If you are travelling from out of town to attend Jumpstart and require accommodations, the Kamloops Towne Lodge is offering a group rate, and they have a few wheelchair accessible rooms available. There are also several other hotels nearby the Kamloops Convention Centre that may suit your individual needs/preferences.

If you live in the Kamloops area and require information or assistance in planning your transportation to the event, please contact Cyndi at the office. There is a city bus stop (#7 Aberdeen) right in front of the venue, and Handydart is also available to those who

are registered with that service. You may book the Handydart yourself (a couple days ahead), or you can contact Cyndi at the office, and she will make sure you are on the list for a ride.

Details of the conference are as follows:

9:00 am Participants Check-in (Kamloops Convention Centre main entrance)

9:30 am Keynote: Getting Your Head Around the Cognitive Changes In MS Rosalind Kalb, PhD

Workshops:

Evaluating Complementary and AlternativeTherapies for Managing YOUR MS - Pat Kennedy, RN, CNP, MSCN

Support Partner Workshop - Rosalind Kalb, PhD

Pilates for People with MS - Anna Cotton, CPI

2:30 pm – 3:00 pm Wrap-Up/Post-Program Survey Please note, detailed program agendas will be handed out the morning of the program. There will be two breaks throughout the day, and lunch is provided as part of the program.

A national nonprofit organization based in Edwards, Colorado, Can Do Multiple Sclerosis is an innovative provider of lifestyle empowerment programs that empower people with MS and their support partners to transform and improve their quality of life. For more information, visit the organization’s website at www.mscando.org or call 970-926-1290.


One In Three - By Heidi Redl

Statistics and numbers have been on my mind a lot lately and not only because it’s Income Tax time. I just had my first

follow-up trip to Mexico. So listed in order from the serious to the less serious (but more embarrassing) stats: One in three people who undergo CCSVI venoplasty show significant improvement, one shows mild to moderate improvement and one shows no improvement at all. I had forgotten those stats, right after my procedure in November. I was too busy showing people how I can walk without a cane.

My husband and I flew back down to Sanoviv clinic in February for the 2-3 month follow-up. The other two women who were down there in November 2010 and had the CCSVI venoplasty procedure done at the same time managed to show up for their follow-up concurrently so we could all reconnect.

The lady in the wheelchair is still in the wheelchair. Tom helped her husband transfer her in and out of the clinic van and noticed that she no longer uses her legs to support herself momentarily like she did in November. I noticed she kept her jacket on the whole time because she was cold. I have to say, Mexico even in February is not a cold place, especially when you come from Canada. But I have been too busy working out at the gym to notice the cold much this winter anyway.

Back to the stats: one in three women will be abused in her lifetime. I suspect the number is higher in women with multiple sclerosis who live under full-time care, at the very least as far as financial abuse goes. But I have been too busy claiming the expenses from the whole Mexico trip on my Income Tax to worry much about depleted finances. The procedure isn’t available in Canada so apparently, people who have had it done can claim it... we’ll see how that works out.

Back in Sanoviv, the first follow-up test was the ultrasound procedure. Both of my

jugular veins are operating “within normal parameters” and there was no indication of blood flow pooling or reversing. The lady from Kelowna is showing some restenosis and has had one MS symptom return – spasticity in her legs. She was unable to have one of three blockages opened in November due to problems with her neck and has to have follow-up procedures for her neck problems here in Canada. I was too busy walking up and down the stairs to my next appointments on my now blessedly flexible and strong legs to get more information on her condition but we hope to meet up at some point this spring.

One in three people will develop cancer in their lifetime. There are five members in my immediate family, so I hate these stats. HATE them. Tom has already beaten cancer and when I look at my children I have to hope it’s me who gets that disease next... then again, only 2% of people get MS I’m told and I’ve already beaten those odds.

My last follow-up appointment was with the Mexican neurologist who watched me walk and did the standard tests: touch your nose with your finger and then touch my finger, watch my finger go from side to side, walk down this hallway... He told me he sees improvement in my condition. I agreed there is improvement.

The trip home was, nevertheless, a sad one. I am thrilled to be the ONE in three with good improvement. I am not thrilled that there can still be only ONE. Let’s get the wrinkles ironed out of this procedure and better those odds. If CCSVI isn’t the answer for everyone; let’s get going on this thing and find the answers.

The final stat for now: light bladder leakage affects one in three women in general but I suspect the number is higher in women with multiple sclerosis. ‘Nuff said here.

There is a terrific blog written by a fellow MSer named Marc Stecker. The blog iswww.wheelchairkamikaze.com. Marc gave me


permission to quote him in this column and he sums the CCSVI situation up very succinctly: “On the flipside, some of the most fervent CCSVI advocates portray the hypothesis as a breakthrough cure for MS, a viewpoint that, while possible, simply isn’t supported by the weight of the currently available evidence. A growing body of anecdotal reports certainly indicates that clearing blockages in the CNS associated veins of some MS patients provides relief of symptoms, but the degree of relief varies widely from patient to patient, and a signifiant number of patients experiences no relief whatsoever.

Although this lack of effectiveness of CCSVI treatment in some patients is of course disappointing, it really shouldn’t be surprising, as we do know that MS presents itself very differently from patient to patient, and gets increasingly more difficult to treat the longer the duration of the disease. Different subpopulations of patients almost certainly have different disease triggers, and there’s the distinct possibility that what we call Multiple Sclerosis isn’t really one disease at all, but rather a collection of similar diseases that share symptomatic and diagnostic profiles. Vascular issues may play a large part in the disease of some patients, but a much smaller

role, or no role at all, in the disease of others. There is still much to learn about CCSVI, and we don’t yet even know the prevalence of the venous abnormalities collectively known as CCSVI in the healthy population. Stating anything about CCSVI, pro or con, with unequivocal certainty only sets one up to be proven wrong.”

In the meantime, with the energy I’ve regained since the procedure I have a garden to plant... a new house to build... a political campaign to run... and Marc and I are going to climb Mt. Everest when he finally gets relief from his MS symptoms. I can still say with the utmost certainty that CCSVI worked for me. You will see me at the MS Walk in Kamloops again this spring, walking the course WITHOUT a cane, WITHOUT a footbrace and WITH a big smile. I will walk for those for whom the CCSVI procedure wasn’t the answer.

One in Three Continued - By Heidi Redl

Author Heidi Redl

On March 1, 2011 the MS Society launched a new website developed to meet the informa-tion needs of those wanting to learn more about CCSVI or considering CCSVI treatment. Visit ccsvi.ca today. Browse the ‘Your Story’ section of the site, which allows you to share personal experiences on CCSVI in a safe environment.


Spring 2011

Please return undeliverable mail to:

Acknowledgements

Thank you to the Province of British Columbia and Kamloops North Rotary Club for funding this newsletter.

Contributors

Natasha Chisholm, Cyndi Lion, Heidi Redl, and Leanne Fisher.

Kamloops & Area Chapter

Contact us at:250-314-0773or toll [email protected]/kamloops

Calendar of EventsApr 28 - Living with MS GroupMay 4 - MS Social LunchMay 7 - Can Do JUMPSTART WorkshopMay 15 - Scotiabank MS WalkMay 16 - Yoga for WellnessMay 22 - Darcy Lynne Provencal Memorial Charity Golf Tournament May 26 - Living With MS GroupMay 27 - Yoga for WellnessMay 30 - Outreach in MerrittMay 31 - Outreach in ChaseJun 1 - MS Social LunchJun 13 - Outreach in LillooetJun 20 - Outreach in Clearwater & Barriere

Final Notes

Disclaimer: The MS Society does not approve, endorse or recommend specific products or services and respects an individual’s right to make their own health management decisions. However, we can provide information to assist people in their decision process. For specific, personalized information, please consult your physician or other health care professional. Articles in this newsletter do not necessarily represent the position of the MS Society but are solely representative of the position and opinions of the contributors.

2011 connection - ms society...ms connection page 3 spring 2011 new medical update memo on march 9,...

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