MS Connection Summer 2011

Fall2011

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

www.youtube.com/mssocietyofkamloops

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www.twitter.com/ MSKamloops

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Kamloops and Area Chapter 2011 Office Open House -

Connecting With Our Community!We want you to join us in reviewing 2011 and

looking forward to 2012!Let’s celebrate our volunteers, supporters, donors and

achievments. We would also like your feedback of what has worked over the past year and hear about any changes you would like to

see as we move forward to next year!

Thursday, December 1st 4-6pmSuite 180-546 St. Paul Street

Draw Prizes, Goodies, Coffee/Tea and more!Everyone welcome!

RSVPs welcome, but not required. Phone 250-314-0773 or email info.kamloops@mssociety.ca for more information.

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Staff Update

Chapter News

A&W Crusin’ For a Cause

MS Bike Tour

Community News

Services

Wellness

Renewal Initiative

Meditation Study

Rural Views

Events Calendar

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The Kamloops and Area Chapter is extremely fortunate to have the support of numerous community volunteers.

Our major events like the MS Bike tour and the MS Walk would be impossible to run without this support. Over 100 volunteers are needed for each of these events, and many of these people take on more than one role. Tasks are varied from arriving at 5:30am to help with set-up, to serving food, registering participants or route marshalling. We are currently hoping to recruit more volunteers for our fundraising committees for these events to assist with communications, marketing and fundraising development. Please contact the Chapter office for more information.

In this newsletter we say goodbye to Heidi Redl, a regular volunteer contributor to our newsletter, as she changes focus and pursues other opportunities. We truly appreciate her commitment and sharing over the years, and wish her well in what lies ahead. We would now like to extend the invitation for other people in our MS community to write about their perspective and experiences of dealing with MS. This is open to people with MS, caregivers or friends of people with MS, and health professionals supporting people affected by MS. Topics could be varied, and we would be happy

for regular contributors, people who contribute once a year or those who write a single story.

Volunteers also support the Chapter office with many administrative tasks including answering the phone, assisting with fundraising events, newsletter mailout and delivery, calls to members or group participants and more. Pre and post event time is always busy, and this year we were fortunate to have two Japanese students from TRU World provide assistance with the MS Bike Tour. If you are interested in volunteering at the Chapter office or at one of our events, please contact myself or Chapter Manager and Fundraising Coordinator, Trina Radford. We would love to hear from you!

To all of our volunteers and supporters – thank you for your dedication to the Kamloops and Area Chapter!

Leanne Fisher Administration and Communications Assistant

Staff Update

The Kamloops and Area Chapter MS Connection Newsletter is intended to provide news and information to people living with MS, their families, caregivers, medical professionals and other stakeholders. Information/opinions contained in this newsletter are obtained from sources believed to be reliable, but their accuracy cannot be guaranteed. 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.

• New good quality office work chairs• LCD projector for Power Point presentation

or group webinars• Prizes for Family Events (new toys/books

or gift certificates to a toy/book store)• New flatscreen computer monitors

• Gift certificates for a local grocery store for refreshments for groups like Living Well with MS

• Sponsorship for the MS Walk or MS Bike• Gift Certificates to be used for fundraising

incentives or donor recognition

Current Wish List for Donations from the Community for the Chapter Office

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

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

Chapter News

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

We’re on Twitter

General Donations:

TRU WorldPineridge Golf Course - MS Charity ClassicKamloops Fusion Rotaract

Recent support from Our Community MS Walk 2012 - Save the Date!Sunday, April 29, 2012

Rona MS Bike Tour - Thompson River Ride

Summer Family Event at the BC Wildlife Park

Summer Student Stephanie Schoen and Community Services Coordina-tor Cyndi Lion at the Open Door Group International Disability Film Festival TRU World Japanese

students volunteer in the Chapter office

2011 Summertime Photos!

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A&W Cruisin’ for a Cause Day

A&W and the Multiple Sclerosis Society of Canada thank Canadians for their incredible support. A&W Food

Services of Canada Inc. (TSE: AW.UN) is proud to announce that more than one million dollars was raised in support of the Multiple Sclerosis Society of Canada during its third-annual Cruisin’ for a Cause Day held on August 25. In total, this national fundraising event has raised more than $2 million over the past three years to help end MS.

“The ongoing enthusiasm and commitment to this very important cause has been outstanding,” said Paul Hollands, president and CEO, A&W Food Services Canada. “On behalf of A&W, I would like to thank and congratulate all of our customers, staff, car clubs and other supporters across Canada who helped us achieve this significant goal.”

“This incredible achievement was made possible thanks to the people of A&W who made it their mission to raise $1 million with tremendous spirit and a deep commitment to the community,” said Yves Savoie, president and CEO, MS Society of Canada. “On behalf of all of those touched by MS, I offer heartfelt thanks to the entire A&W family who made this success possible. The funds raised allow us to reach into communities to deliver life-enhancing services and fund research that brings us closer to ending MS every day.”

More than 730 A&W restaurants across Canada helped raise funds through the sale of cut-outs, customer contributions and donations of

$1 from every Teen Burger® sold on August 25. Cruisin’ for a Cause (or le Rendez-vous A&W pour stopper la SP as it is known in Quebec) raised both funds and awareness of multiple sclerosis through a variety of events including classic car gatherings, retro music, car hop service and car hop relay races, hula hoop contests and Great A&W Root Bear® visits.

In the Kamloops and Area Chapter region all of the A&Ws showed amazing spirit and the communities responded generously. In fundraising, the Fortune Restaurant came in 1st in BC and 4th in Canada, and the Columbia Place Restaurant came in 2nd in BC and 7th in Canada. Congratulations and thank you to everyone for their support!

A special thank you to JT and 97.5 The River and Paul Graham and Radio NL for their on-site reporting at the Columbia Place and Fortune Restaurants.

A&W Rootbear at the Fortune Restau-rant

Taryn, our volunteer, speaking to JT from the River, at the Columbia Place Restaurant

Halston Restaurant

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Thank you to everyone who partici-pated in this year’s Rona MS Bike Tour on Sunday September 11th! So far our total raised is approximately $50,000!

2011 Rona MS Bike Tour Thompson River Ride

Riversbend Orchards

askAaron.ca

Top Fundraisers Photo: (from left to right): Myrna Hastings $10,720 , Dino Gnoato $2,590, Sue Whittaker $2132, Michelle Hennig $1293, Duane Hennig $1377, Leianne Anderson $1050, Heidi Von Schoening $1,470, Britt Antoniuk $1229, Lance Edwards $1,900. Missing: Martin O’keane $1670.

Sun River Organics

White Spot

Summit Gourmet Meats

Thank You to Our Sponsors

TITLE

NATIONAL

GOLD SILVER

LOCAL

BRONZE

Other Awards

Top Team: You Go Gang, $11,805Top Rookie: Lance Edwards, $1900Best Team Spirit/Attire: Team Loki (BC)Best Team Name: New Gold Block Cavers For a CureLargest Team: Tabroosky Pedalers - 29 teammates

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Our fall family event is scheduled for Friday, Oct 28th 2011. We are pleased to have received a generous donation of tickets to the Blazers hockey game. The game starts at 7pm and

is “Pink Powerplay Night”, so there will be events/info related to Breast Cancer research at the venue. Feel free to wear pink! Participants will also be provided with gift cards for McDonalds. The food gift cards and hockey tickets will be handed out between 5:30 and 6:30pm (to those who have pre-registered) at the 3rd and Victoria Street McDonalds location. Families can opt to eat with the group or save their gift cards for another time. Please contact Cyndi at 250-314-0773 or cyndi.lion@mssociety.ca by October 27th (before 3pm) to RSVP for your hockey tickets

and food GCs, or for more info. Families will be limited to 5 tickets for the game and 5 McDonalds GCs. Tickets and GCs will be given out on a first come first served basis. If you do not have children or grandchildren under 18 to bring to this event, but would like to attend the game, please call and you will be added to a list should there be extra tickets available. When registering for this event, please tell Cyndi if you require accessible seating. 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.

Community News

The Kamloops & Area Chapter hosted a very informative session at Desert Gardens on Saturday, October 15th.

Ulrike Kleeman, Director, Division and Chapter Resources and Candace Martin, Citizen Services Specialist, Service Canada did an amazing job of sharing information and resources aimed not only at people with MS who are currently working, but all people with MS.

Topics discussed included:

VLAP: which services can we provide to people with MS?

Leaving the workforce: What income options are available?

Overview of all income options available to people with disabilities.

Detailed information about:

• Employment Insurance versus Medical Employment Insurance

• CPP-Disability Benefits

• Provincial Disability Benefit Plan

• Registered Disability Savings Plan

How can you be your own best advocate?

If you missed this workshop, but have questions or comments related to any of the topics covered; please contact Cyndi at the Chapter office.

Fall Family Event - Blazers Hockey and McDonalds

Fall Education Event – Volunteer Legal Advocacy (VLAP) Presentation

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Cyndi visited the communities of Williams Lake and 100 Mile House in October. This year we welcomed guest speakers at both locations. Feedback from those who attended these sessions was very positive, so we hope to do it again next year.

If you live in any of our outreach communities and you were unable to attend the meetings, you can follow up with Cyndi if you have any questions or comments.

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.

Community Services

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

The new time, day, and format will be evaluated in November. Please be sure to share your thoughts and suggestions about this group with Cyndi before the end of November so that potential changes can be implemented as early as January.

Hamlets Care Facility Visits

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

Please note: Cyndi is also available to visit other care facilities or make home visits upon request.

Fall Outreach

For any questions regarding the information on the Community Services pages or to register for an event, please contact Cyndi Lion at 250-314-0773 or cyndi.lion@mssociety.ca.

Williams Lake outreach - Stewart Bell (centre), Physiotherapist with ProPhysioworks meets with participants.

100 Mile House outreach - Katherine McKibbin from Sweetgrass Yoga and Healing leads participants in a visualization exercise.

Did you know the Kamloops & Area Chapter includes:Merritt Lillooet ClearwaterLytton Cache Creek Williams LakeBarriere Chase 100 Mile House

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Community Services

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 coolcanadian73@hotmail.com for more information.

MS Social Lunch

The next social lunch will take place at Denny’s on the North Shore on Wednesday, November 2nd at 12:30pm. We will be spending the first few minutes discussing potential changes for the Social Lunch in the New Year. Even if you are not a regular of the Social Lunch group, please feel free to share your comments and suggestions either in person at Denny’s, or by contacting Cyndi at the Chapter office anytime.

The MS 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.

MS Holiday Lunch

Our annual holiday lunch will again be held at the Army, Navy & Airforce Veterans (Anavets) hall on 444 Tranquille Rd. December 7th 12-1:30pm. We hope you will join us for this fun and festive event. We’ll have a few activities and prizes to keep you entertained! Feel free to wear your finest holiday attire, or your tackiest Christmas sweater! Cost: to be announced, we are hoping the cost will be the same, or very close to what it was last year ($8.50 per person for a full hot turkey dinner).

People with MS, carepartners, family members, friends, MS Society staff, volunteers, and board members are all welcome at the Holiday Lunch. Please RSVP by Monday, December 5th. Payment for lunch is to be made in advance at the Chapter office (no later than December 6th please).

Self Help Groups

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

It is important to note that carepartners 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.

Carepartners

Please Join Us for our Chapter Open House - Connecting

With Our Community! Thursday, December 1st, 2011 4-6pm

Kamloops and Area Chapter OfficeSuite 180-546 St. Paul Street

All are Welcome!

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Wellness and MS

For any questions regarding the information on the Community Services pages or to register for an event, please contact Cyndi Lion at 250-314-0773 or cyndi.lion@mssociety.ca.

HamletsErna Stassen facilitates a monthly class at the Hamlets in Westsyde on the first Monday of each month (dates will be adjusted for stat holidays) at 10:50am. The next sessions are set for Monday, November 7th and Monday, December 5th in the Grand Hall.

Individuals interested in attending the Hamlets Wellness classes who do not live at the Hamlets can contact Cyndi at the office to discuss details about participating. The Hamlets movement classes are all chair based.

Yoga for WellnessCylynne Edgelow Abdullah continues to teach one yoga class monthly for us at St. Paul’s Cathedral at 360 Nicola Street. The next two sessions will be on Wednesday, November 9th and Wednesday December 14th at 10:15am (please try to arrive 5-10 minutes early).

Both of these 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. Please check with Cyndi regarding the January 2012 yoga and movement classes.

Other Wellness Opportunities

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 potential options.

We also have several City of Kamloops swim passes to give away. Please call the office if you are interested.

Feedback

In order to provide high quality service to as many people with MS (and their family members) as possible, we will once again be evaluating our wellness program. We plan our programs based on participant demand and funding, and we are always looking for ways to improve our service while ensuring adequate funding to do so. Your feedback is always welcome!

Movement Classes

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Renewal Initiative

For over 60 years, the MS Society of Canada has kept people living with MS at the centre of our work. The MS Society

mission, to be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life, has kept us focused on only those activities that move us closer to a world free of multiple sclerosis.

With 55,000 to 75,000 Canadians living with MS and 1,000 more diagnosed in Canada every year, the stakes are high, giving us the impetus to constantly look for ways to deliver on our mission as effectively as possible.

Against this backdrop, we are pleased to announce the MS Society of Canada Renewal Initiative. Under the direction and leadership of the national board of directors, a taskforce will work to ensure that the purpose of the

Renewal Initiative is met, which is to examine all aspects of the MS Society including its internal structure, roles and responsibilities to determine if there are ways we can more effectively and efficiently deliver on our mission. To ensure a rich and balanced reflection of interests, membership on the taskforce includes people living with MS, volunteers, the research community and staff. The taskforce will report directly to the national board over the course of its 18-to-24 month mandate.The Renewal Initiative will include opportunities for your input and we look forward to hearing from you. Please stay tuned to mssociety.ca for details and for periodic updates on the Renewal Initiative. Questions? Email renewal@mssociety.ca.

A recent large study, shows mindfulness-based meditation significantly improves health-related quality of life,

depression and fatigue based on 150 people with relapsing-remitting and secondary-progressive multiple sclerosis. This controlled study provides important evidence on the value of an alternative treatment for MS symptoms, and it highlights the importance of focusing on quality-of-life issues to improve well-being.

Depression and fatigue are common symptoms of MS and can interfere with quality of life. For this study, investigators focused on whether a type of meditation, called mindfulness-based intervention, could improve well-being in people with MS. This

form of meditation is mental training aimed at changing an individual’s perception, and creating awareness and acceptance of moment-to-moment experiences. The goal is reducing reactions that may worsen any pain or emotional distress that occur from health-related changes.

Source: www.nationalmssociety.org/chapters/mnm/chapter-news/chapter-news-detail/index.aspx?nid=4132

A more detailed description of the study is available through MS Society of Canada Medical Update Memos: mssociety.ca/en/research/medmmo_20101021.htm

MS quality of life, depression, and fatigue improve after mindfulness training

We need readers!

Are you a teacher interested in finding out more about the MS Read-A-Thon/MS Read & Walk? Visit msreadathon.ca to learn more about the

program and to meet Bosko!

Join Us for 2012!

MS Connection Page 11 Fall 2011

Rural Views by Heidi Redl

It’s a strange thing, learning to live all over again. I was going to say, ‘learning to live without MS’, but technically, some

of the MS handicaps are still a part of my life. Nevertheless, I’m ready to accept those (mostly heat intolerance) and move on without the mental burden of dealing with MS. Almost a year ago, the doctors in Mexico told me that the best a patient can hope for with this CCSVI procedure I underwent is to halt MS in its tracks. So, the improvements I’ve noticed in the last year are a bona fide bonus. A year after the procedure I’m still improving, slowly, but surely. For example, I went for a short walk today without my hiking poles, a.k.a. substitute canes. I haven’t had the balance and confidence to do that in at least four years. I doubt I’ll use those poles ever again.

One part of the Mexico treatment that I wondered about when I was there last November, as in thinking it was almost foolish, was the two visits to the psychologist that the treatment package included. In hindsight, I was wrong. Now I realize that the way you think about yourself and this disease are key. The psychologist, “Loretta”, had me choose wooden dolls to represent my family and place them in a time-line row. Then she asked me to pick a doll that represented my illness. I pulled out one half the size of the doll that represented me and then when she asked where I would put it, I put it in the past. I knew then already, as I still know now, I’m done with MS. Yes, I still have some symptoms. But I don’t have excuses for not living a full

life anymore. No, I can’t run long distances but I can man a refreshment station for those who do. No, I can’t dig up a vegetable garden by hand but I can plant, weed and harvest a raised-bed garden just fine.

So, with MS in my past and no longer playing a role in my present, I’m looking ahead at being flexible with my plans for the future. My husband and I are building a smaller house, down-sizing now that the kids have moved on, and it is going to be handicapped-accessible in case one of us needs that in the future. Work for me will continue to be writing from home. It suits me and I’d rather work in my own office than somebody else’s. I’ll go back to teaching next spring at the university in Williams Lake. I think too that this column will unfortunately be part of my past. I don’t feel that I can honestly write about the trials and tribulations of MS from either a rural or any other perspective anymore. My heart just isn’t in it.

Like I said, I’m done with MS. I’ll make an appointment to see my neurologist at UBC, just to show her how I’m doing post-procedure but then I doubt I’ll be going there anymore. She’s a nice lady, but, she’s redundant. I’ll be still following the quest for the Cure for MS with great interest and I wish you all the very best with the eventual treatment for your disease. Good luck to one and all!

Author Heidi Redl

CCSVI.ca is a website dedicated to information about chronic cerebrospinal venous insufficiency (CCSVI) from the Multiple Sclerosis Society of Canada.

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Fall 2011

Please return undeliverable mail to:

Acknowledgements

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

Contributors

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

Kamloops & Area Chapter

Contact us at:

250-314-0773or Toll Free1-888-304-6622info.kamloops@mssociety.cawww.mssociety.ca/kamloops

Calendar of EventsOct 28 - Family Event - Blazer’s GameNov 2 - MS Social LunchNov 7 - Hamlets Movement Class and VisitNov 9 - Yoga for WellnessNov 22 - Living Well With MS GroupDec 1 - Chapter Open HouseDec 5 - Hamlets Movement Class and VisitDec 7 - Holiday LunchDec 14 - Yoga for WellnessDec 23-Jan 2 - Office Closed for Holidays

Final Notes

Online MS discussion boardwww.msdiscuss.com

Meal Deliverywww.bettermeals.ca/get/delivery.html

Clinical Trial Informationwww.clinicaltrials.gov

Websites of Interest