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The West Kootenay Contact

Newsletter of the West Kootenay Chapter of the Multiple Sclerosis Society of Canada Volume 8 Issue 2 March/April 2009

Our Mission: To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.

10 am – Check-in 11 am – WALK! Noon – food, fun and entertainment

Register at www.mswalks.ca

Godfrey’s Grannies at Nelson’s 2008 Walk… the Grannies are unable to attend this year, but if you’d like to make a donation in their honor, please mail a cheque to our office… Box 202, Balfour BC V0G 1C0.

Lakeside Rotary Park in Nelson AND Trail’s Gyro Park Sunday, April 26th

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The MS Society of Canada is offering the third annual post-secondary scholarship program for teens and young adults in Canada who have a parent with MS, or have MS themselves. This is an annual scholarship program that will be sustained through ongoing sponsorship support and other fundraising initiatives. This year, we hope to award up to $75,000 in scholarships to eligible Canadians. The MS Scholarship Program was supported in its initial phase by the popular Juno Award-winning punk rock band Billy Talent, and through the exceptional commitment shown by the band’s drummer, Aaron Solowoniuk. In addition, through collaborative efforts with colleagues at the National MS Society in the United States, the concept of a Canadian scholarship program for teens with MS or a parent with MS, based on the hugely successful US model, was developed. On February 4, 2009, the program was officially launched for 2009. The program is featured prominently on our website where application forms and complete background information is available. The Spring issue of MS Canada will also highlight the launch of the program. We are pleased to announce that Tyler Hale of Nelson was awarded a scholarship for the 2008-2009 academic year. Tyler is attending Civil Engineering (Year 3) in Calgary.

“MS doesn’t only affect the person who is diagnosed. It also affects all the people close to that person such as family and friends.”

“I have a first hand look at how MS affects people, as my mom has multiple sclerosis. Things you did as a family become more difficult. It becomes difficult watching MS take over your family.”

“One of the most frustrating things with MS is trying to do daily activities. Something as easy as going to the grocery store has become more challenging for my family than most people would think. MS also makes going on trips difficult. Even though we can use a wheelchair, there are many places a wheelchair can’t go, and many of these places are the most interesting.”

“I watch my dad suffer from the effects of MS as well. Even though he doesn’t have the disease, he is the main person that looks after my mom, and when he isn’t home there isn’t much she can do. Because of this he finds it hard to leave home for any length of time to do things he enjoys, knowing that while he is having fun, she is sitting at home not doing very much.”

“Ever since my mom was diagnosed with MS I have hoped that a cure would soon be out there. This hasn’t happened yet, but I hope for the sake of my family and other families that it is found soon.”

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The Registered Disability Savings Plan (RDSP) is now available. To be eligible for a RDSP, the beneficiary of the savings plan must be eligible for the Disability Tax Credit (DTC). A few good sources of information about RDSPs that you may be interested in: 1) Planned Lifetime Advocacy Network (PLAN) has a RDSP calculator to help people figure out how much they can contribute and receive from government grants. www.plan.ca 2) RDSP.com has a lot of FAQs about the plan itself as well as some really good tips on things people need to keep in mind when they're opening a RDSP www.rdsp.com. In BC, the Bank of Montreal (BMO) is the only bank currently offering RDSP’s and only through their investment center in Toronto. This is expected to change later in the year (but probably not before the 2008 contribution date of March 2, 2009 comes and goes). Individuals need to have a BMO account and then they need to call 1-800-665-7700 to speak with the investment centre and get an application mailed out to them. Don’t forget that this is an investment so individuals need to think about where they want the money invested and what risks they are willing to take. This is especially critical in today’s global financial hard times. 3) The Vancouver Foundation Endowment 150 grant is explained here: http://vancouverfoundation.ca/specialprojects/endowment150.htm Information we have received about the Endowment 150 grant is as follows: The Province's and the Vancouver Foundation's key message is that "In just the first year, a British Columbian on income assistance can turn $25 into $1700 with Endowment 150 and grants and bonds from the Federal Government. When British Columbians on income assistance open an RDSP with $25, they can apply to receive a $150 grant from the Endowment 150 fund. In addition, the

federal government will provide a grant of $525 and a $1,000 federal bond. Within one year, clients can earn $1,700 plus interest from their original investment of just $25." Given that the Endowment 150 grant will be not be available until this Fall, the message above relates to 2009 only. You may recall an earlier announcement of note is the fact the deadline for opening an RDSP, making contributions and applying for the matching Grant and the income-tested Bond for the 2008 contribution year has been extended to March 2, 2009 from December 31, 2008. The 2009 RDSP contribution year will effectively begin March 3, 2009.

Trail Volunteers Needed! Come on people… support your West Kootenay Chapter of the MS Society and challenge Nelson. Show them that you can be bigger and better with your second Walk for MS than they are for their 8th!!!! If you can raise money for the Chapter, go to www.mswalks.ca and sign up for the Walk. If you can be available on April 26th, from 10 am till 2 pm, call Lonnie toll free at 1-866-352-3997 and sign up. We need your help, and the funds raised will be used to support programs and activities for you and your friends and family!

Message from Lonnie Facchina

Community Services CoordinatorWest Kootenay Chapter It’s been a busy new year for me with my new duties as Fundraising Coordinator… and I’m loving it! Our Nelson and Trail Walk’s are gearing up, with 30 people registered in Trail and 64 in Nelson (as of March 9thyour friends and family and ask them to get involved this year. With the global economic situation making everyone cautious about where they put their money, we will find it easier to achieve our goals if we have more people asking for pledges. The money raised at our Scotiabank Walk for MS in the West Kootenaysour services and programs here. programs include this newsletter bimonthly opportunity to reach evermember in our region with news, information, events and stories. The Gym and Swim Program is our way of giving members practical help. Exercise keeps your body moving when MS seems to want it to stop, it decreases stress levels, which can precipitate MSand it’s been proven to work in alleviating depression. Our new, improved program has increased our funding to up to $250 annually for the exercise program of your choice. Swim, go to Curves, buy a piece of equipment and work out in your home… it’s your choice. And now we’ll also fund the same amount for your primary, live

Community Services Coordinator

It’s been a busy new year for me with my new duties as Fundraising Coordinator…

Our Nelson and Trail Walk’s are gearing people registered in Trail and

March 9th). Talk to your friends and family and ask them to get involved this year. With the global economic situation making everyone cautious about where they put their

achieve our goals if we have more people asking for

The money raised at our Scotiabank Walk Kootenays goes into

our services and programs here. Our main programs include this newsletter – our bimonthly opportunity to reach every member in our region with news,

The Gym and Swim Program is our way of giving members practical help. Exercise keeps your body moving when MS seems to want it to stop, it decreases stress levels, which can precipitate MS flare-ups, and it’s been proven to work in alleviating depression. Our new, improved program has increased our funding to up to $250 annually for the exercise program of your choice. Swim, go to Curves, buy a piece of equipment and work out in your home… it’s your choice. And now we’ll also fund the same amount for your primary, live-in,

unpaid care giver. We know that being the spouse, child or parent of someone with MS means extra work around the home, extra stress with trying to juggle family and job, and the occasionally being the brunt of some venting! We want to encourage those amazing unsung heroes to enjoy a good workout on us. Lonnie Facchina Community Services Coordinator1-866-352-3997

Feldenkrais in TrailIf we have enough our members in Trail, Rossland, Fruitvale, etc… we would love to hire a Feldenkrais practioner to run a workshop or two. If you like it, we can arrange for regular classes. Please call the office and let Lonnie know if you would be interesteparticipating, and what times and days are best for you.Call toll free to 1-866

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unpaid care giver. We know that being the spouse, child or parent of someone with MS means extra work around the home, extra stress with trying to juggle family

frustrations of occasionally being the brunt of some venting! We want to encourage those amazing unsung heroes to enjoy a good

Community Services Coordinator

Feldenkrais in Trail we have enough response from

our members in Trail, Rossland, Fruitvale, etc… we would love to hire a Feldenkrais practioner to run a workshop or two. If you like it, we can arrange for regular classes. Please call the office and let Lonnie know if you would be interested in participating, and what times and days are best for you.

866-352-3997

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CHAPTER NOTES

BOARD OF DIRECTORS The Board of Directors of the West Kootenay Chapter meets on the last Tuesday of each month, at 7:00 pm at the boardroom in the Nelson and District Credit Union. Because the date changes when there are holidays, please call our office if you wish to attend the meetings. Board Members are: Chair – Dan Carlson Vice Chair – Mike Sherwood Treasurer - Alita Mann Secretary - Dave Wayling Sandra Helbecque Carolyn Zabawa Lynn Hale Yev Malloff Bobby Scott If you would be interested in letting your name stand for a two-year position on the Board, please email Mike Sherwood at m.b.p.sherwood@shaw.ca, or phone the office at 1-866-352-3997.

Next Board Meeting: March 24, 2009 (not the last Tuesday in March, as Dan Carlson, our Chair will be away then)

Next Newsletter: Mid May 2009

SELF-HELP/SUPPORT GROUPS ……are informal get-togethers. People can share helpful tips, information, resources, and experiences. Phone a contact person for further information.

The Boundary MS Support Group is on hiatus, however, Norma would be happy to join anyone in the Grand Forks area for a coffee at a local restaurant. Call her at 250-442-4085 to make arrangements. If you would like a meeting of the Boundary Support Group, the contacts are Jo-Ann at 250-442-0805 and Cathy at 250-449-2177.

The Castlegar Group meets on the 3rd Thursday of each month at 10 am at the Castlegar Community Services Clubhouse at 1005 2nd St. in Castlegar. Contact: Shana at 250-365-2669. Valley Support Group - meeting the last Thursday of each month from 2 till 3:30 pm at the Boardroom in the Slocan Lake Community Health Center Education Room at 401 Galena Avenue in New Denver. Contact Linda at 358-2220. Winlaw and area – contact Gabriella at 355-2765 if anyone would like to meet.

Golden – meets once a month for coffee and conversation. For information call Becky Kamstra 250-344-2010.

Nelson - Meetings are every 2nd and 4th Wednesday and are casual. Contact: Lynn at 825-0019 for time and location.

Wanted: Folding aluminum ramp to get power chair into back of pickup truck. Call JC at 250-355-2475 if you can help…

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The greatest gift of all is a future free from

MS.

NEWLY DIAGNOSED?

Contact Lonnie for Information and Services

Toll Free 1-866-352-3997

SWIM AND GYM PASSES AVAILABLE!

The Board of Directors of our Chapter

feels that exercise is one of the best things a person can do to stay healthy. We also

understand that it is not always affordable.

That is why we’ve created a local program to subsidize your choice for exercise

– gym passes or memberships, swimming, yoga, tai chi, purchase of equipment, etc.

Contact the West Kootenay Chapter

office at 1-866-352-3997

You and your primary, unpaid, live-in caregiver (e.g. spouse, sibling, parent, child) may be eligible for up to $250 in subsidies so call for more information!

Tysabri Update

by Allen C. Bowling, MD, PhD

Tysabri, also known as natalizumab, is an MS drug that was FDA-approved in June 2006. Clinical studies demonstrated that Tysabri is a very effective MS medication—it reduces attack frequency, slows disability progression, and decreases the risk of developing new MRI lesions. At the time of its approval, it was recognized that, in addition to its beneficial effects, Tysabri may, very rarely, cause a serious and usually fatal brain infection known as PML (progressive multifocal leukoencephalopathy). In clinical trials, three out of about 3,000 people treated with Tysabri developed PML. Two of these people died. All of the people who developed PML were treated with Tysabri “combination therapy”—that is, Tysabri was used along with other medications that affect the immune system.

What is PML?

PML is caused by a virus, the “JC virus,” to which most people have been exposed. As is the case with many viruses, the JC virus remains in the body but is kept under control by the immune system. If the immune system is weakened—typically by the AIDS virus or immune-suppressing medications, such as cancer chemotherapy or Tysabri--then the virus can be activated and infect and injure the nervous system. Continued next page…

Two New Cases of PML

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Due to the PML risk and its apparent association with Tysabri combination therapy, the FDA has established strict requirements: people treated with Tysabri must be extensively monitored and may only be treated with Tysabri as a “monotherapy,” which means that Tysabri must be used alone and not as a “combination therapy” in conjunction with other immune medications.

Tysabri and PML For more than two years after Tysabri’s approval, more than 30,000 people worldwide were treated with Tysabri and there were no subsequent cases of PML. Then, in July 2008, it was announced that PML developed in two people with MS who were being treated with Tysabri:

n A person who had never been treated with an MS medication was treated with Tysabri. After 17 months of treatment, PML was diagnosed on the basis of neurological symptoms as well as MRI and spinal fluid results. In order to restore normal function of the immune system, a blood-filtering procedure known as “plasma exchange,” or “plasmapheresis,” was used to quickly remove Tysabri from the bloodstream. According to reports, this person now lives at home, is able to walk, and is “clinically stable.”

n The other person, who had been treated in the past with chemotherapy and interferons, was diagnosed with PML after 14 months of Tysabri monotherapy. As of late July, the person was hospitalized. There is no additional information about their clinical situation or treatment course.

Implications for Tysabri Use

The recent diagnosis of two people with PML raises questions about Tysabri.

What new insight do we have about Tysabri? Should the new information change the way that Tysabri is used?

In order to improve our understanding and optimize our use of Tysabri, we should try to learn as much as possible from these recent PML cases. There are several new pieces of information:

Monotherapy Causes PML. These recent cases demonstrate that PML may develop in people who are treated with Tysabri as a single drug—in other words, Tysabri monotherapy may cause PML. This has not been recognized previously.

Monotherapy May Be Safer Than Combination Therapy. In terms of risk, it was thought previously, on the basis of the past clinical trial information, that the risk of developing PML with combination therapy was, very roughly, 1 in 1,000 (3 people out of 3,000 in the clinical trials). For Tysabri monotherapy, the available information indicates that 6,600 people have been treated for 18 months and 14,000 people have been treated for 12 months—the two recent cases occurred after 14 months and 17 months. Using rough approximations, the risk of PML in those on Tysabri monotherapy may be one in several thousand. It must be emphasized that, due to the relatively small numbers, these are very rough calculations. With the limited information, though, it may be that the risk of PML with monotherapy is somewhat lower than that with combination therapy.

PML May Not Always Be Fatal. It is encouraging that one of the recent cases, as well as one of the past cases, actually survived PML. As noted, PML was typically thought to be fatal. However, in the past, it was mainly observed in people with permanently weakened immune systems, such as those with AIDS or advanced cancer. In contrast, for people with MS who are being treated with Tysabri, the immune system is not permanently weakened—removing Tysabri with the blood-filtering process may quickly improve immune function and actually allow the immune system to fight off PML and limit the nervous system injury that is caused by the infection. If this proves to be the case, then PML

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may still be a very significant side issue--but somewhat less concerning.

Application to Day-to-Day Practice

The recent cases of PML have been a “reality check” for health providers as well as patients. MS specialists were concerned and saddened by the news. At the same time, most felt that more cases of PML were likely to occur. For some, there was a lingering hope that perhaps PML would not occur with Tysabri monotherapy. Based on the current information, the PML risk is in the same range as previous estimates and thus does not significantly change how many practitioners think about the risk-benefit profile of Tysabri and which patients should be considered for treatment.

For people with MS, I have had many discussions with my own patients who are taking Tysabri. The vast majority has chosen to continue with Tysabri, but many wanted to hear—again, in detail—their other treatment options. For the rare people who have chosen to discontinue Tysabri, the decision did not appear to be based on any evidence for higher risk. Rather, the new PML cases—occurring in the present to people not in clinical trials—seemed to “hit home” and perhaps lead to a consideration of risk that was more realistic than that made previously.

Each person’s situation is unique. If you are receiving or considering Tysabri treatment, you should have a detailed discussion with your physician. This discussion should include detailed consideration of the risks and benefits of Tysabri and other treatment options.

A New Wave of MS Decision-Making?

In the MS community, we have been fortunate that the initial FDA-approved medications (Avonex, Betaseron, Rebif and Copaxone) did not carry high risks. Tysabri may be the first in a new wave of MS therapies that provide

significant beneficial effects but also carry significant risks. The type of “higher odds” decision-making that we now make with Tysabri may be more commonplace in the future. Like Tysabri, many experimental drugs in the MS “pipeline” have significant beneficial and adverse effects. Since risk-benefit discussions are likely to be common in the future, it is timely for all with MS to consider these issues carefully and develop their own views regarding how much risk they are willing to take to achieve beneficial effects.

Additional Information

More information about Tysabri may be found at the Biogen Idec website: go to www.biogenidec.com, click on “Products,” and then click on “Tysabri.”

Dr. Allen C. Bowling is the Medical Director at the Rocky Mountain MS Center. He is also the director of a wellness program based at the center and is a Clinical Associate Professor of Neurology at the University of Colorado Health Sciences Center. Dr. Bowling received his undergraduate, M.D., and Ph.D. (pharmacology) degrees at Yale University. He completed a residency in the neurology department at the University of California, San Francisco and was a Fellow in the Neurology Service at Massachusetts General Hospital and Harvard Medical School. Dr. Bowling has published numerous articles in clinical and basic science journals.

Dr. Bowling has presented information and original research on CAM and MS at national and international medical conferences. His work on herb and vitamin use in MS was awarded the Labe Scheinberg award at the annual meeting of the Consortium of MS Centers in May 1999. The information that he has developed on CAM and MS is available in a book, Alternative Medicine and MS: a Practical Guide, published through Demos Medical Publishers.

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Do you have questions about MS and are you unsure of where to go for answers? Do you have concerns about family issues, complementary medicine, or MS symptoms and their management? Whatever your area of interest, at Ask the Expert you have the opportunity of connecting with top health professionals and researchers in the MS field. Our experts are here to answer your MS-related questions. Go to www.msanswers.ca to ask a question or read about what other people have asked.

Q :

I have read articles about the promise of Trimesta (estriol) in the treatment of MS. Apparently it has been available in Europe and some parts of Asia for many years and has been proven to be a mild, safe and effective way to treat post-partum depression. I also read that studies are underway in North America looking into its value as an MS treatment, and that results so far have been very promising ” even pointing to possible regeneration of myelin ” but that availability to the general public in North America is many years down the track. This boggles my mind. If it has been proven to be safe and free of harmful side-effects, why can't we just go to the doctor, get a prescription, and try it out?

A :

Estriol has been of interest for some years due to the observation that relapses of MS are reduced in pregnancy and increased after delivery. Estriol is the weakest of the three natural estrogens but the one of greatest interest in seeking answers to this observation and as a possible therapy. Because it also seems to be able to reduce the number of new MRI lesions, there is a California study of 150 patients to initially test the hypothesis that estriol may be a

valid treatment for MS. The answers are not yet known and the answers will be only short term answers at first (MRI effects; relapses) as the important question about long term benefit on progression of the disease take years of study to become clear. Estriol has been used in Europe for decades, but usually for other reasons such as menopausal symptoms. There has been a precaution that women taking the drug long term should also take progestin to reduce the possibility of uterine cancer. Paradoxically there appears to be a beneficial effect on protecting from breast cancer. As to the "promising results" they are on indicators that MRI may show beneficial effects, but no trials have yet demonstrated benefit in patients. There is a normal process for any drug to be licensed for sale in Canada and estriol could be put through that process if there was a clear indication of effectiveness and safety. If studies show that estriol is safe and effective it would not be long before some company would make the necessary submission. In the meantime it is still an unproven therapy for MS, along with over 200 other therapies said to be useful without good evidence or studies to substantiate the claims. On the other hand, 30 agents are now under study where there is information to suggest they might be effective and 140 clinical trials underway to study various therapies and combinations of therapies. These are very expensive studies to do well, and the California estriol study is expected to cost $4.7 million US. I realize it is difficult to wait for study results as studies take a long time, but many therapies suggested for MS have been shown to be useless, some very expensive

and some harmful to MS patients, so it is wise to consider therapies with good evidence from good studies of effectiveness and safety DISCLAIMER: Please be aware that this information does not necessarily represent the opinion of the MS Society of Canada, and is not intended as medical advice. For specific advice and opinion, always consult a physician.

Susan Grimble’s Feldenkrais Classes Classes are Wednesdays 5:30-6:30and Thursdays 11:00-12:00 at the Kootenay Feldenkrais Center 206 Victoria St. 250-352-3449 The first class is free and those connected with the MS Society can drop in for $8.00. Individual sessions are available to Society Members for $40.00 (call our office free 1-866-352-3997 to see if you qualify for a subsidy)

CALENDAR OF EVENTS

March 24 – Meeting of the Board of Directorspm at the Nelson & Dist. Credit Union Sunday, April 26 – 10 am Scotiabank Walk for MS Lakeside Rotary Park –Nelson Gyro Park – Trail Next issue of West Kootenay Contact – May is MS Awareness Month – Call otoll free at 1-866-352-3997 if you’d like to volunteer MS Carnation Campaign – Mother’s Day weekend… Book your bouquets now! Call 1-866to buy carnations for $15 /doz.

and some harmful to MS patients, so it is wise to consider therapies with good evidence from good studies of effectiveness

Please be aware that this information does not necessarily represent the opinion of the MS Society of Canada, and is not intended as medical advice. For specific advice and opinion, always consult a physician.

Susan Grimble’s Feldenkrais

6:30

at the Kootenay Feldenkrais Center

The first class is free and those connected with the MS Society can drop in for $8.00.

to Society Members for $40.00 (call our office – toll

3997 to see if you qualify for

Full Service Gas Stations in BC Whether going on a trip within the province, or just doing your everyday commute, knowing where to find a full service gas station saves time and brings peace of mind. The BC Paraplegic Association has compiled a comprehensive listing of full service gas stations across British Columbia to assist people with disabilities. Please copy the link to your BC stations on Google Maps; http://maps.google.com/maps/ms?hl=en&ie=UTF8&msa=0&msid=116813908452566971521.00045899e3d1acf1f2636&z=5 To get a PDF listing by city or a PDF listing by gas company please check out the website; http://www.bcpara.org/default.aspxdon’t have access to a computer, phone our office and we will mail one

The West Kootenay Chapter acknowledges the financial

assistance of the Province of BC in producing our newsletter.

CALENDAR OF EVENTS

Meeting of the Board of Directors, 7 pm at the Nelson & Dist. Credit Union

10 am Scotiabank Walk for

– mid May

Call our office, 3997 if you’d like to

Mother’s Day

866-352-3997

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Full Service Gas Stations in BC

Whether going on a trip within the province, or just doing your everyday commute, knowing

ind a full service gas station saves time The BC Paraplegic

Association has compiled a comprehensive listing of full service gas stations across British Columbia to assist people with disabilities.

to your browser to view all BC stations on Google Maps; http://maps.google.com/maps/ms?hl=en&ie=UTF8&msa=0&msid=116813908452566971521.00045899e3d1acf1f2636&z=5

To get a PDF listing by city or a PDF listing by gas company please check out the website; http://www.bcpara.org/default.aspx or if you don’t have access to a computer, phone our

to you.

West Kootenay Chapter

acknowledges the financial of the Province of BC in

producing our newsletter.

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How to Treat Weak Muscles Caused by MS Weakness can definitely be a primary symptom associated with MS. Weakness can also be a secondary symptom secondary to disuse or deconditioning. At this point, the only treatment that can be used is exercise. Exercise can definitely improve the strength of muscles over time. Exercise is generally recommended to address weakness that is the result of disuse of deconditioning. It does not have a demonstrable effect on primary weakness which is due to problems with nerve conduction. Therefore, it is important to approach your strength training prudently. A consultation with an occupational therapist or physiotherapist may be appropriate to accurately assess and make recommendations for the specific strengthening exercises which can improve strength. The assessment will provide valuable information on which muscles or muscle groups require strengthening as well as whether the goal is to improve muscle power or muscle endurance. The ultimate goal of the strength training program is to improve overall function and performance (such as specific mobility activities). In some cases, this will mean that you will have to ‘rethink’ how you have done strength exercises in the past. Many times we have been taught that we must exercise our muscles to the ‘point of fatigue’ to gain the benefits of strengthening exercises. With MS, it is generally not recommended to exercise to the ‘point of fatigue’ because it is often neurological or short circuiting fatigue. Exercising to the point of neurological fatigue does not increase strength, but usually leads to substitution with other muscles or muscle groups and therefore promotes unwanted movement patterns and therefore actually decreased strength in the muscles you are trying to strengthen.

One must also consider spasticity when assessing strength and designing a strength program. Spastic muscles are generally weak. For many years, it was thought that we should not strengthen spastic muscles because it would increase stiffness. We now understand that these muscles are weak and should be strengthened (and stretched). Many people will use their spasticity for functional movements (i.e. using leg extension spasticity to aid in a sit to stand transfer). Therefore, spasticity management interventions need to consider how spasticity is being used to maximize function. Many of the medications being used to treat spasticity will increase weakness and adversely affect a person’s function. Therefore, a balanced exercise program of stretching and strengthening should be utilized. Research has demonstrated that people with MS can increase muscle strength over time. This has been demonstrated with traditional strength training activities such as weight training and resistive tubing. In addition, increased strength has been shown with aerobic activities (stationary bicycling) and aquatics. This further demonstrates the effect of physical activity on improving strength secondary to deconditioning. Physical activity has been shown to be beneficial in improving strength in people with MS. Each person’s needs and goals are unique and therefore their exercise program may be different. Consulting with a rehabilitation professional, with experience in working with MS, before initiating your strength training program is recommended to provide the most efficient program which will maximize the benefits and your function.

THE CLUMSY COOKShannon Jones

Spring is just around the corner! And with Spring comes the Easter Bunny and all the chocolate he brings. So when the urge comes to bite that tempting chocolate bunny’s head off, along with his tummy, feet and little chocolate tail … try these surprisingly delicious yet healthy chocolate alternatives! VEGGIE BROWNIES These brownies fool everyone! But it's not until they're completely cool that the spinach flavour totally disappears. • 3 oz. semisweet or bittersweet chocolate• ½ cup carrot puree • ½ cup spinach puree • ½ cup firmly packed light or dark brown

sugar • ¼ cup unsweetened cocoa powder• 2 tbsp trans-fat-free soft tub margarine

spread • 2 tsp pure vanilla extract • 2 large egg whites • ¾ cup oat flour or all-purpose flour• ½ tsp baking powder • ½ tsp salt

Preheat the oven to 350°. Coat an 8" x 8" baking pan with cooking spray. Melt the chocolate in a double boiler or over a very low flame. In a large bowl, combine the melted chocolate, vegetable purees, sugar, cocoa powder, margarine and vanilla and whisk until smooth and creamy, 1 to 2 minutes. Whisk in egg whStir in the flour, baking powder, and salt with a wooden spoon.

THE CLUMSY COOK

Spring is just around the corner! And with g comes the Easter Bunny and all the

chocolate he brings. So when the urge comes to bite that tempting chocolate bunny’s head off, along with his tummy, feet and little chocolate tail … try these surprisingly delicious yet healthy

These brownies fool everyone! But it's not until they're completely cool that the spinach flavour

3 oz. semisweet or bittersweet chocolate

½ cup firmly packed light or dark brown

¼ cup unsweetened cocoa powder free soft tub margarine

purpose flour

Preheat the oven to 350°. Coat an 8" x 8" baking

Melt the chocolate in a double boiler or over a

In a large bowl, combine the melted chocolate, vegetable purees, sugar, cocoa powder, margarine and vanilla and whisk until smooth and creamy, 1 to 2 minutes. Whisk in egg whites. Stir in the flour, baking powder, and salt with a

Pour the batter into the pan and bake 35 to 40 minutes. Cool completely in the pan before cutting into 12 bars. NOTE: HOW TO PUREE Carrots: Peel, trim the ends and cut into 3 inch chunks. Steam for 10-12 minutes. Puree in a blender or food processor for about 2 minutes, with a few teaspoons of water if needed for a smooth texture. Spinach: Steam baby spinach leaves for 30 to 40 seconds or just until wilted. Puree in a blender or food processor for about 2 minutes, until smooth and creamy. FROZEN CHOCOLATE PEANUT BUTTER CUPS Who needs all that Easter chocolate? You can have these any time of year• 1 nicely ripened banana• ¼ cup light peanut butter• 2 tbsp cocoa • 1 tbsp sugar substitute, • 2 tsp vanilla extract

Mash all ingredients together with a fork until well blended. Place 6 muffin papers in a muffin tin. Divide the chocolate batter up evenly between the cups. Freeze for at leastTake one out at a time and eat frozen. Makes 6 snacks. ICED MOCHA LATTE A refreshing drink to pick you up in the afternoon! • ¼ cup decaf coffee • ¾ cup skim or 1% milk• 2 tsp cocoa or hot chocolate mix• 1 cup ice • a dollop of 95% fat-free whipped topping

Put coffee, milk, cocoa and ice container. Blend until smooth. Pour into glass, top with whipped topping and serve. Serves 1.

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Pour the batter into the pan and bake 35 to 40 minutes. Cool completely in the pan before

Carrots: Peel, trim the ends and cut into 3 inch 12 minutes. Puree in a

blender or food processor for about 2 minutes, with a few teaspoons of water if needed for a

Spinach: Steam baby spinach leaves for 30 to 40 seconds or just until wilted. Puree in a blender or

processor for about 2 minutes, until smooth

FROZEN CHOCOLATE PEANUT BUTTER

Who needs all that Easter chocolate? You can have these any time of year!

1 nicely ripened banana ¼ cup light peanut butter

1 tbsp sugar substitute, such as Splenda

together with a fork until well blended. Place 6 muffin papers in a muffin tin. Divide the chocolate batter up evenly between the cups. Freeze for at least a few hours.

eat frozen. Makes 6

A refreshing drink to pick you up in the

¾ cup skim or 1% milk 2 tsp cocoa or hot chocolate mix

free whipped topping Put coffee, milk, cocoa and ice in a blender container. Blend until smooth. Pour into glass, top with whipped topping and serve. Serves 1.

Members Voices

Submitted by member JC Bradford: I started January 2009 with the delivery of a used power chair, thanks to the generosity and support of the MS Society Equipment Provision Program; Scott Rookes OT, who assessed the size and type of chair required, helped with the application; Lonnie Facchina,Kootenay Chapter of the MS Society, helped round up the paperwork; and my partner, Robert Macdonald, located the unit and encouraged me to apply. Because it has a lift that raises you up to counter height, I am now able to cook, do laundry and dye textile projects at the sink; it is so much easier getting around, mobile but sitting down comfortably; I can go outside on the deck for fresh air and a change of scene; it has restored my zest for life. In 2008, thanks to CMHC funding, we were able to build a covered access ramp for using the wheelchair to get into and out of the house, and inside we had a chair-lift installed so that I can get upstairs to the bathroom, bedroom and office. I am grateful for these changes also: they allow me to stay in our home and cope with increased challenges in the mobility department. The Slocan Valley Threads Guild, where I volunteer, has added a covered ramp and walkway for

Submitted by member JC Bradford:

I started January 2009 with the delivery of a used power chair, thanks to the generosity and support of the MS Society Equipment Provision Program; Scott Rookes OT, who assessed the size and type of chair required, helped with the

ina, of the West of the MS Society,

helped round up the paperwork; and my partner, Robert Macdonald, located the unit and encouraged me to apply. Because it has a lift that raises you up to counter height, I am now able to cook, do

ry and dye textile projects at the sink; it is so much easier getting around, mobile but sitting down comfortably; I can go outside on the deck for fresh air and a change of scene; it has restored my

In 2008, thanks to CMHC funding, we able to build a covered access ramp

for using the wheelchair to get into and out of the house, and inside we had a

lift installed so that I can get upstairs to the bathroom, bedroom and office. I am grateful for these changes

stay in our home and cope with increased challenges in the mobility department. The Slocan Valley Threads Guild, where I volunteer, has added a covered ramp and walkway for

wheelchair access to their restored schoolhouse, and so I am able to continue my involvement there with a creative community, in the power chair.

Thank you to the MS Society for your assistance in making this happen.

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wheelchair access to their restored schoolhouse, and so I am able to continue

involvement there with a creative community, in the power chair.

Thank you to the MS Society for your assistance in making this happen.

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We’re on Facebook Now! The MSN MS Clubhouse shut down and we were forced to find new digs. So now you can find us by going to Facebook and searching for West Kootenay Chapter, MS Society of Canada. In order to protect our privacy we’ve requested that all potential members be approved by our site administrators. If you’re a member of our chapter, I will know it and you’re in. If I don’t recognize the name, I send a message and request for information – where you live, what is your interest in MS, etc. Sometimes a friend or a family member would like to join, so as long as that person replies to my request for more info they’re in too, as long as they have a connection with MS the West Kootenays. The website address is as follows:

http://www.facebook.com/home.php#/group.php?gid=61113086472

If you have never tried Facebook, here are some tips:

Facebook gives people the power to share and makes the world more open and connected. Millions of people use Facebook everyday to keep up with friends, upload an unlimited number of photos, share links and videos, and learn more about the people they meet.

Health Council of Canada Launches Forum The Health Council of Canada launched a forum February 23 to engage Canadians in a national dialogue about value for money, to open a conversation about how to get 'the biggest bang for the buck' in health care. The Health Council poses a number of questions: When it comes to health care, are Canadians getting value for money? Do we care? We should, the Health Council argues. Health care now accounts for nearly 40% of provincial budgets. Last year, Canada spent $172 billion on health care. The Health Council says, it's time to ask: Are we funding the right things? Are we getting the best value for the money we already spend? Are we investing in the programs and services that will yield the greatest health improvements for Canadians? We must figure out a way to make our money go further without compromising the quality of care Canadians have come to expect and need. To join the discussion, as an individual, go to www.CanadaValuesHealth.ca (or for the French-language link http://www.valeurdelasantecanada.ca <http://www.valeurdelasantecanada.ca/> ) to read the Health Council's paper, Value for Money: Making Canadian Health Care Stronger, released today, as well as an array of interactive tools. Visitors will be able to debate the issues, post comments, take part in surveys, watch videos, listen to podcasts, read what other people are saying, and more. According to the Health Council, contrary to popular belief, aging and population growth are not the major causes of the rise in

Fair Pharmacare Calculator: http://www.health.gov.bc.ca/pharme/plani/calculator/calculator.html

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Canada's health care spending. In reality, half of the increase can be directly attributed to the accelerating use of the system. Canadians are now using the system more than ever. We have to understand why, question whether we're getting healthier as a result, and come up with new ideas for improving efficiency. The Council will release a series of follow-up papers on specific aspects of value for money throughout the year. Created by the 2003 First Ministers' Accord on Health Care Renewal, The Health Council of Canada is mandated to monitor and report on the progress of health care renewal in Canada. Councillors were appointed by the participating provinces, territories and the Government of Canada.

B.C. LAUNCHES PATIENT CARE REVIEW PROCESS

VANCOUVER – Health Services Minister George Abbott today announced a new toll-free phone number and website as part of a new process that better enables patients to register complaints about the quality of their experience in the public health-care system in British Columbia.

“We all want a quality health system – a system that provides us with appropriate, consistent and timely care; a system that is transparent and accountable; and a system that treats every patient with respect and dignity,” said Abbott. “And today we are delivering on our Throne Speech commitment for a new process that provides patients with the opportunity to better

resolve concerns and further improve the quality of our world-class health care system.”

In support of the new patient care review process, the Minister also announced the appointment of members to six new Patient Care Quality Review Boards, one for each health authority. The role of the review boards is to help seek solutions to individual concerns that have not been satisfactorily resolved by the health authority’s own patient quality care office. Members of the review boards are drawn from the local community, and are independent of the health authorities.

Effective today, each of B.C.’s six health authorities have a centralized Patient Care Quality Office. Patients, or family members of patients, who have concerns about their experience are encouraged first to resolve the issue with the service provider, and if still unsatisfied, to contact the local patient care quality office. The offices register all complaints and track them through the health authority review process to ensure a timely response. If patients feel their concern is still not resolved by the patient care quality office, they can take their concerns to the patient care quality review board for consideration of an independent review.

“The patient care quality review boards will not only directly respond to patients who have concerns, but also share the lessons learned with the health authorities and government so we can continue improving our health-care system,” said Dr. Jack Chritchley, chair of the Patient Care Quality Review Boards for Vancouver Coastal, Fraser and Provincial Health Services. “I am pleased to play a role in this new process and believe that the boards will support the public’s confidence and further strengthen the quality of our world-class health-care system.”

The review boards have been established as a result of the Patient Care Quality Review Board Act, which was introduced to create a robust complaints process and provide a mechanism to continuously improve B.C.’s health care system. The act requires:

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· Each health authority to establish a central patient care quality office, which can receive concerns from patients or their loved ones in person, by telephone, fax or email.

· Each health authority to follow a standardized process in receiving, tracking and responding to care quality concerns.

· Each health authority to meet timelines in responding to public complaints within 30 business days.

· Review boards to make recommendations to the health authorities and the minister with the goal of continuously improving the health care system.

· Review boards to report annually to the minister on the number and type of complaints received, the timeliness of service, the recommendations made, and other related information.

For more information on B.C.’s review boards please visit the website at www.patientcarequalityreviewboard.ca or phone toll-free 1-866-952-2448.

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