summer connection 2011 - ms society...ms connection summer 2011 summer 2011 a newsletter for the...

MS Connection Summer 2011

Summer2011

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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ConnectionIn This Issue

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THOMPSON RIVER

RONA MS BIKE TOUR 2011

RIDE

JOIN THE ADVENTURESEPTEMBER 11,2011

12,28,40 or 57km Ride

Register online at msbiketours.ca Phone 250-314-0773 or

Toll Free 1-888-304-6622

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Staff Update

Chapter News

Third Party Events

MS Bike Tour

CCSVI Update

Community News

Services

Wellness

2011 MS Walk

Placebo Effect - by Heidi Redl

Events Calendar

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MS Connection Spring 2011

Life has this inevitable feature of always moving forward regardless of where we are or how we feel at any given moment. It has already been a month since I returned to the Kamloops & Area Chapter and it has been an incredibly quick year since I left on

maternity leave. What a year it has been! It is so bewildering to see how life moves so quickly and so slowly both seemingly at the same time. There have been days that have lasted an eternity for my new family (especially when my daughter has been sick or teething) and then whole months have gone by in a flash!

I believe it has been the same here at the Kamloops & Area Chapter. It seems like it was just yesterday we welcomed Natasha Chisholm as the Chapter Manager and now it has already been a month since she has left us. I am eternally grateful to her for filling my position over the last challenging year. She did an incredible job, as did Cyndi Lion, Leanne Fisher and all the volunteers while I was gone. To say it was a challenging, yet rewarding year, is an understatement.

Since I began at the Kamloops & Area Chapter approximately 3 years ago, the changes we have seen are incredible. Multiple Sclerosis has been in the news headlines and on the minds of Canadians at unprecedented levels. Individuals affected by MS are communicating and advocating for themselves and each other like never before. We have seen new self-help groups come together. Almost daily, more information becomes available regarding research

and education, and more research in areas such as CCSVI are moving to federal government funding for clinical trials.

Change in life is a given, but not all of it happens without a few bumps on the road. Unfortunately, given our current fiscal climate my hours have been reduced to part-time, but we, the Kamloops & Area Chapter will continue to meet our mission in the best way possible.

With you, our members, and our community, we are everything. Our door is always open; we hope to hear from you soon.

Trina Radford, Chapter Manager and Fundraising Coordinator

Photo: Trina and daughter Soleil enjoy the outdoors!

Staff Update

General Donations: Darcy Lynne Provencal Memorial Golf TournamentRBC FoundationCanada SafewayChase Lions ClubRotaract FusionCISKD - St. Ann’s AcademyService Canada (HRDC)

Recent support from Our Community

Donations In Memory Of:Florence Milman Mary Patton Douglas Olaf Tjader


StaffCyndi Lion, Community Services CoordinatorLeanne Fisher, Administration & Com-munications AssistantTrina Radford, Chapter Manager & Fundraising CoordinatorStephanie Schoen, Chapter Assistant

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

With the weeks flying by, it is hard to believe that I have already been at the Kamloops and Area Chapter for over a month. Hi, my name is Stephanie Schoen and I am

thrilled to be working as a Chapter Assistant at the Kamloops and Area Chapter until the end of summer. I grew up in Kamloops and graduated from Valleyview Secondary in 2009 before making the move eastward. I recently completed my second year of an Honours double major program in Biochemistry and Political Science with Co-op option in Biochemistry at the University of Ottawa, and I will return to Ottawa to continue my studies in the fall.

With several members of my family diagnosed with MS, I am familiar with the challenges that it can bring to everyday life. Working at the chapter office is such a rewarding environment, and I am inspired daily. My interest in nonprofit groups began when I was in high school, where I was an avid volunteer in the community and had the privilege to participate in a volunteer abroad trip in the Dominican Republic, and has continued in to my university career, where I both volunteer locally at a retirement home and am part of the organizing committee for the National Student Commonwealth Forum. My role as a Chapter Assistant allows me to combine my passion for scientific research with my experience volunteering and event planning, and I am having a great time!

My work at the office includes daily office tasks, wrap-up from the 2011 Scotiabank MS Walk, assistance on outreach visits, and planning the 2011 Rona MS Bike Tour. We are looking to make some exciting new additions to the bike tour this year and I am so excited to see where they take us. I am looking forward to the rest of my time at the office, and would like to take this opportunity to wish everyone an enjoyable summer!

Stephanie Schoen, Chapter Assistant

Chapter News

Saturday, August 27, 20113rd Annual MS Charity Classic at Pineridge Golf Course4 person scramble, shotgun start at 1:00pm. Great hole in one prizes! Contact Adam at Pineridge Golf course for more information or to register at 250-573-4333 or email [email protected].

Follow us online at: www.twitter.com/MSKamloops

NEW! We’re now on Twitter


Third Party Events

Cyclist Jordan Kozina and his travelling companion Paul Huff (accompanying Jordan to Jasper) stopped at the Kamloops and Area Chapter, MS Society of Canada, in June to promote

Jordan’s Trek 4 MS (www.trek4ms.ca). Jordan is biking across Canada in support of the Multiple Sclerosis Society of Canada. The goal of his campaign is to raise awareness of Multiple Sclerosis in Canada as well as to stimulate funds to dedicate to MS research and to assist Canadians affected by the disease.

His trek will involve biking across the country, from Tofino, BC to Cape Spear, NFLD, and connecting with 29 Multiple Sclerosis local Chapters. Jordan departed June 12th and with a planned route of over 9000km he’s expecting to complete the trek in 3 months. He will be carrying all of his gear on his bike and camping, for the most part, along the way. Jordan says “I look forward to the challenges

I will be presented with as I see them as temporary and minor inconveniences compared to the continuous daily challenges people living with MS are faced with. My fundraising goal is $100,000 and I really do believe that together we can blow this goal out of the water. Let’s make this one of the most successful “Third Party” fundraising and awareness campaigns for the Multiple Sclerosis Society of Canada.”People can follow Jordan’s progress or pledge their support through his website www.trek4ms.ca or follow him on twitter at www.twitter.com/trek4ms.

The Kamloops and Area Chapter welcomed two members of Aimie Law’s Only Human Rock 4 MS Tour to the office on June 1st. When Aimie Laws’ father was diagnosed 7 years ago with MS, she struggled with how she could help him. The Only Human

Rock 4 MS Tour, an 11-day, 9-city tour, was Aimie’s way to give back to her father and others fighting with MS, as Aimie combined her passion for both music and finding a cure for Multiple Sclerosis.

The tour aimed not only to raise funds for the MS Society, but also to bring awareness of the disease to a younger generation who may have limited exposure to information about MS. With her powerful vocals and blues rock sound, Aimie was able to reach many in a powerful way. The tour started as an individual show, but quickly, many more BC artists jumped on board. The reaction from the public was extremely positive, and during Aimie’s stop in Kamloops, only half-way through her tour, she had already raised double her goal for the MS Society.

Aimie’s tour is notable because it was directed largely at youth, and included shows at the Pleasant Valley Secondary School, Chapters bookstore in Kelowna, and several other all-ages shows. After her stop in Kamloops, Aimie continued on to Vancouver, Kelowna, and back to her hometown of Salmon Arm. Through the tour, a portion of all Only Human Album sales, merchandise sales, and all donations were donated to the MS Society of Canada. The youth-driven tour was an extreme success, raising over $3,600.

Stephanie(Left) and Natasha (Right) meet two members of the Only Human Rock 4 MS Tour

Jordan and Paul


Rona MS Bike Tour/CCSVI Update

MS Society of Canada welcomes federal commitment to fund CCSVI trials

On June 29, 2011 the Honourable Leona Aglukkaq, Minister of Health, announced that the federal government will fund Phase I/II level clinical trials on chronic cerebrospinal venous insufficiency (CCSVI) and MS.

The MS Society of Canada has called upon the federal government and provinces and territories to fund therapeutic clinical trials and has committed $1 million towards the financial cost of a clinical trial. Many jurisdictions have responded and we encourage others to as well.

We are pleased to see that the federal government and CIHR have kept MS at the top of their healthcare agendas. The topic of CCSVI is an important one for the MS community and people living with MS have asked for definitive answers.

This recommendation was based upon a meeting of the CIHR’s scientific expert working group, which met yesterday, and unanimously recommended the design and launch of a Phase I/Phase II therapeutic clinical trial. The highlights from this meeting will be posted on the CIHR website.

The CIHR meeting highlights indicate that the seven funded studies are progressing well. As of July 1, 2011, the studies will be at their halfway point, concluding in July 2012. The year interim progress reports are now available on mssociety.ca and ccsvi.ca.

The MS Society of Canada will continue to monitor all developments related to CCSVI. People living with MS are at the center of our work and this will continue to be what drives us as we move through this exciting new phase of MS research.

Creating a Sustainable Rona MS Bike Tour

One of the goals for the Kamloops Thompson River Ride is to provide and promote sustainable, local and, if possible, organic food for our riders as well as our volunteers.

This year we are excited to already have Gardengate Horticulture, Thistle Farms and Riverbend Orchard on board. As we progress through the summer we hope to add additional local growers and producers to our

tour. To find out more about the tour you can visit us in person at the Saturday Kamloops Farmers Market on July 30th, August 13th and August 27th.

On each of these Saturdays you will also have an opportunity to win a free registration to our RONA MS Bike Tour by successfully completing our “Minute to Win it” Challenges. We hope to see you there!

You can also go to our tour webpage at: www.msbiketours.ca to register or find out more information.


Community News

MS Read-A-Thon UpdateOur 2010-2011 schools have now completed the MS Read-A-Thon. Thank you to all the amazing readers and fundraisers at Aberdeen Elementary, Aberdeen Hills Montessori Preschool, Bert Edwards Science and Technology School, Cache Creek Elementary, Parkcrest Elementary and Westsyde Secondary. Schools raised $8618.44 and read 104,665 minutes (that’s

adds up to over 72 days)! Thank you to everyone who supported us so far this year! Schools can now register online at msreadathon.ca!

MS Ambassadors Needed for MS Read-A-Thon or MS Read & Walk Presentations Are you a person with MS who would be willing to share your story with children in your community? We would love to have you join us in our MS Read-A-Thon or MS Read & Walk kick-off assemblies! This is a great way for students to understand more about MS and how it affects different people. It also is a great way to inspire children to be involved in our programs. MS Ambassadors are asked to share a little bit about how MS affects their daily life and answers a few questions from students. Please contact us for more information, or if you are interested in being part of a kick-off assembly.

United Way Community CarnivalThe Kamloops & Area Chapter joined a number of non-profit organizations on July 15th for a day of fun for the whole family in downtown Kamloops. The United Way Community Carni-val was a great way for the Chaper to promote the MS Bike Tour and our Chapter Services. Photos: Volunteers Laura Muraca (left) and Kelly Byrne (right) demonstrate our “Minute to Win It” activities at the carnival.

The MS Society of Canada introduces someonelikeme.ca, a new online commu-nity to give Canadian youth impacted by MS a place and space to be heard, to learn, to connect, and to effect positive change in their communities. This site hosts forums, blogs, information resources and more.

Photo: 2011 MS Read-A-Thon B100/CJFC TV Broadcast Centre Tour


Summer Family EventOur summer family event has been planned for Saturday, August 13th at 10am-12pm** at the BC Wildlife Park (www.bczoo.org). Admission to the park will be covered for all participants, and light refreshments will be provided. Prizes will also be available for the kids! Contact Cyndi at the office if you wish to RSVP for this event. Please note that this event is limited to no more than 2 adults (18 and older) per registered family. Families requiring more than 2 adult

admissions will need to purchase additional tickets. Don’t forget your swim suits and towels if you want to get wet in the Splash Park!

**participants can stay as long as they want, but chapter staff will only be on site until noon. 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 Newsflashes, you will be notified in advance of these fun family events. Please contact the office if you would like to be added to these lists.

Living Well with MS Support/Education GroupThe Living with MS Group will be changing in the fall to the Living Well with MS Support/Education Group. This group will take place on the 4th Tuesday of each month from 3:30-4:30 pm. As before, the group will focus on sharing with, and supporting others with MS and their carepartners. We will also continue to invite guest speakers as long as there is a continued interest in doing so.

HamletsStarting this September, Cyndi will be visiting Hamlets on the first Monday of each month at 10:30 (dates will be altered for stat holidays) before the Hamlets Movement class with Erna Stassen. Residents of Hamlets and/or their family members can request individual meeting times as needed. Call Cyndi for more info.

CarepartnersCarepartners can participate in our Living Well with MS group, Social Lunch, Wellness Programs, and other special workshops and events.

Carepartners can access 1-1 services by phone, email, or in person. Services for Carepartners includes MS education, referrals, and supportive counselling. If regular carepartner specific education and/or support group meetings interests you, please contact the office. When enough individuals phone, we will schedule a meeting.

Self Help GroupsChase - 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 Lake - This 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.

Community Services


Jumpstart ConferenceWe were very fortunate to have hosted the Jumpstart Conference on May 7th at the Kamloops Towne Lodge. Participants enjoyed the following keynote and workshop topics: “Getting Your Head Around the Cognitive Changes In MS”, “Evaluating Complementary and Alternative Therapies for Managing YOUR MS”, “Support Partner Workshop”, and “Pilates for People with MS”.

We hope to be able to host Jumpstart again in the future if there is enough demand for it. If you missed it this time and you want to know more about Jumpstart and CanDoMS, please visit their website www.mscando.org.

Spring OutreachCyndi visited the communities of Merritt, Chase, Lillooet, Clearwater and Barriere this spring. Fall outreach dates to 100 Mile House and Williams Lake have not been planned yet, but these visits generally occur late September or early October. Watch your MS Newsflashes for detailed information. If you do not receive our newsflashes and are not a current chapter member, you can simply check our calendar of events on our website or call Cyndi at our toll free number 1-888-304-6622 to receive updated information.

Outreach Photos:

A special thank you goes out to the members in our rural areas who have been assisting with our quarterly newsletter distribution. If you live in one of our outreach communities and are interested in helping out with this task, please contact Leanne or Cyndi at the Chapter office for more information.

Social lunch The first lunch of the season will take place at Denny’s on the North Shore on Wednesday, September 7th at 12:30pm. The Social lunch 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.

Community Services

CanDo MS Staff, (Right-Left) Carrie Van Beek, Rosalind Kalb, Pat Kennedy, and Anna Cotton

ChaseClearwater

Lilllooet


Wellness and MS Wellness ProgramsWe are pleased to announce that our new wellness classes will continue in the fall with minor adjustments. If you’ve been thinking about attending, but have not yet done so, now is the time! We are currently looking at ways to enhance our wellness programs, so feel free to share your ideas.

Yoga: Cylynne Edgelow Abdullah will teach one yoga class monthly for us at St. Paul’s Cathedral on 360 Nicola Street. The first session will be on Wednesday, September 14th at 10:15am (try to arrive 5-10 minutes early). Please note the new time and day.

Hamlets Wellness: Erna Stassen will facilitate monthly movement classes at the Hamlets in Westsyde on the first Monday of each month (dates will be adjusted for stat holidays) at 10:50am. The first session is set for Monday, September 12th. Individuals interested in attending these classes who do not live at the Hamlets can contact Cyndi at the office to discuss details about participating. The Hamlets Wellness classes are all chair based.

These wellness classes are offered free of charge to people with MS and/or their carepartners (family members, spouses, close friends, etc.). 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.

Other Wellness OpportunitesWe are currently offering 2 for 1 swim day passes to City of Kamloops pools. (Families will be limited to 4 passes initially.) We are also providing a limited number of YMCA gift certificates for people with MS who plan to take Yoga and/or Feldenkrais classes at the Y this year.

In addition, if you have a limited income and are seeking fitness opportunities beyond our Wellness Program, you may apply for a subsidized membership at the YMCA-YWCA. The City of Kamloops also has funding available (ARCH) to individuals and families with financial challenges.

Summer Heat and MSFor many people with MS, summer is not a pleasant season due to their MS related heat sensitivity. The good news is that there are some strategies that can help. One strategy is to wear “cool clothing”, such as scarves, hats and vests containing substances to retain the cold or heat depending on your needs. If you’ve never tried “cool clothing” before, but would like to try it, we have cooling scarves available at the Chapter office. Please call to arrange pick up of a scarf. We would like to thank our anonymous donor from the Lower Mainland Chapter for the generous gift of these scarves. You have helped many people with MS through your wonderful donation.

For more information and helpful tips about finding relief from the heat, you can check out the following link http://mssociety.ca/en/information/tips.htm or contact Cyndi at the office.

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].


2011 MS Walk

askAaron.ca

2011 Top 10 Teams

1. Team Luce - $11,397 2. Puddle Jumpers - $8713 3. Dreamweavers - $7538 4. Spirit Walkers - $2705 5. Team NRI - $2425 6. The Daoust Nuts - $2420 7. Mommies on a Mission $2385 8. Arthur Hatton Friends $2236 9. Sassy Sisters $1939 10. The Lowrey Family $1660

2011 Top Individual FundraiserS

1. Adrian Enzlin $5643 2. Derek Luce $3918 3. Val Mackinlay $3075 4. Louise Sawchuck $2370 5. Lorraine Luce $2005 6. In Memory of Corby-Ann Fehr $1450 7. Doreen Frederick $1329 8. Dianne Parkin $1290 9. Karen Durston $1289 10. Erin May $1225

Thank You to our Local Sponsors:

Thank you to everyone who participated in the MS Walk on Sunday, May 15th, 2011! Our total raised to date is just over $65,000! The proceeds from the MS Walk will support multiple sclerosis research and services for people living with MS in our community, and your involvement means that you too are a part of the Canada-wide movement to end MS.

Paddlewheelers

Golf


Placebo Effect - by Heidi Redl“It’s just the placebo effect, you know,” my doctor said to me when I saw him last December and showed him how I was walking without the cane and footbrace after my CCSVI treatment the month before. That annoyed me, I don’t mind saying. I know a fair bit about the placebo effect, having done a lot of research on it and the CCSVI treatment before I went to Mexico so I was sure my new-found sense of balance was NOT placebo effect. Still, you know how it is, his words stayed with me.

In February Tom and I went back to Sanoviv Clinic in Mexico for a follow-up and despite a horrific crash I sustained while doing my balancing exercises here at home just before we left – doing them not well, obviously, - I showed small improvements at that point: two months after the surgery. Despite hobbling on sore muscles, I was walking better and still without the cane or footbrace. I also had enough confidence in my improvements to announce out loud that one day I would be dancing in high heels again. The Canadian doctor’s words were still with me though, I know that the placebo effect can last up to six months. Which is why I scheduled my six-month follow-up for June, seven months after the surgery.

This time around the Mexican doctor, and the neurologist they bring in from Mexico City to examine us, requested an MRI to see what’s going on inside my skull. Tom and I were all for that. How often do you get to look at your brain, after all? The last time I saw it, on an MRI scan, it looked like a piece of Swiss cheese with all those lesions all over it and I was rather surprised my poor brain still functions at all. To my way of thinking, with a holey brain like that, I should be a drooling idiot.

Going to Sanoviv for this treatment costs a lot of money but boy do they ever bend over backwards for you once you’re there. I can’t say enough about the level of care they provide. On our flight down to San Diego our flight was cancelled, due to mechanical failure, which was discovered while the plane

was still on the runway in Vancouver thank goodness. We had to reroute to Denver, and finally got to San Diego 8 hours late. The Sanoviv van was waiting. Pedro, the driver, was all smiles and still in a good mood. He drove us across the border and south for 45 minutes to Sanoviv Clinic and then back into Tijuana the next morning for the MRI. The following day, Tom and I met with my doctor and the neurologist, who had been studying the new MRI already back in Sanoviv.

“This is the first time I’ve seen something like this,” the neurologist told us. Then he put the new MRI up beside the old one from last November. There was my holey brain on each MRI film but – one of the holes has disappeared, ie. filled back in and the other holes are smaller on the new MRI. Where there were bright white spots on the old MRI, showing cell-destroying activity, the new MRI was just plain dull grey. Call me stubborn but I don’t believe placebo effect is physical. The neurologist gleefully pointed to the biggest spot on the old MRI and said that this one, which is right by the balance centre of my brain, had been causing problems last November. On the new MRI it is smaller. I felt like doing a tap-dance in his office.

I still have MS. I may always have MS. Who knows how much further the lesions will shrink or if any more will disappear. But what I also have is hope. I’m getting better – still. Slowly, yes, and some days it feels too slow but it is there and I know now, I can beat this thing called MS. The improvements continue... And – oh yeah! – I bought new high-heeled shoes to dance in. Placebo effect, my foot!!

PS: Tom just pointed out to me that I should mention we are still on the gluten-free diet and some of the improvements I’m experiencing may, just may be due to that. We honestly don’t know how much of the improvement can be attributed to just the CCSVI treatment. The gluten-free diet does have anecdotal evidence to support its claim to reduce the effects of MS.


Summer 2011

Please return undeliverable mail to:

Acknowledgements

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

Contributors

Cyndi Lion, Trina Radford, Heidi Redl, Stephanie Schoen, and Leanne Fisher

Kamloops & Area Chapter

Contact us at:

250-314-0773or Toll [email protected]/kamloops

Calendar of EventsJuly 30 - Farmer’s Market MS Bike PromoAug 13 - Summer Family EventAug 13 - Farmer’s Market MS Bike PromoAug 25 - A&W Cruisin’ for a CauseAug 27 - Pineridge Golf MS Charity ClassicAug 27 - Farmer’s Market MS Bike PromoSept 7 - MS Social LunchSept 10 - Early Pledge Drop Off for MS Bike TourSept 11 - Rona MS Bike TourSept 12 - Hamlets Visit and Wellness ClassSept 14 - Yoga for MSSept 27 - Living Well with MS Group

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.

summer connection 2011 - ms society...ms connection summer 2011 summer 2011 a newsletter for the...

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