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Scotiabank MS Bike West Kootenay Glacier
Challenge News
2—3
IChallengeMS—What is it
and how can you get
involved?
4
Active Living Leaders Peer
Support Training
5
Start a Support Group in
your Community
6
Foot Care Subsidy 6
Local Support Groups 7
Keeping Cool with MS—
Strategies to beat the heat
8—9
MS breakthrough:
Replacing diseased immune
system halts progression
and allows repair
10—
13
Clumsy Cook—Refreshing
summer recipes
14
Volunteers Wanted! 15
www.mssoc ie t y .ca 1 -800 -268-7582 , ex t . 7259
The West Kootenay Contact
July/August 2016
Inside this issue:
Some of our MS Bike riders endured the rain
to ride out to Procter for a cinnamon bun in
our first Gearing Up Ride in May. They’ll be
doing it again July 23rd for the final
cinnamon bun run before the big ride.
Will you gear up to end MS?
Page 2
Only 4 weeks until the Scotiabank MS Bike
West Kootenay Glacier Challenge!
2016 West Kootenay Glacier Challenge
Scotiabank MS Bike
August 20th and 21st
222 Km / 2 days - check out our relay option Fully supported with meals included.
Minimum $350 in fundraising, donation or
sponsorship to participate
Will you Gear Up? Late Registration starts August 4th - Register today
and avoid the extra fee .
Don’t think you can
ride the full distance?
Check out the FAQ’s
on our website for
information on the
Relay Option!
www.westkootenayglacierchallenge.ca
To celebrate the 5th Anniversary of the West Kootenay Glacier Challenge, we’ve teamed up with Oso Negro to create #SADDLESORE ELIXIR—Dark Roast
Email Leona to order yours, or take a trip down to Save-On-Foods in Nelson to grab a bag or
two! $8.50 per 1/2 lb bag.
$3 from every bag goes to the MS Society!
Will you say “Lunch is on me!”? - For just $12 you can buy lunch for
a rider or volunteer on the first day of the tour, and your name will go
up on the banner recognizing all the donors. They are riding to show
their support, will you show your support for them? BUY A LUNCH
Did you know our riders have to raise a minimum of $350 to ride? Help them reach their goal:
www.WestKootenayGlacierChallenge.ca
The smallest act of kindness is worth more than the grandest
intention. ~Oscar Wilde
Interested in Volunteering?
We’re in need of photographers willing to take candid shots - no fast action
experience required. Contact: [email protected]
Our final
Gearing Up Ride is taking
place Saturday, July 23rd.
All abilities welcome.
Come on out and
meet other riders taking part in the WKGC. Join us at
the main entrance to Lakeside Park, and be ready to ride at 9 am.
The route will be out to the Village
Bakery in Procter—and you know what their specialty is!! Cinnamon
buns! Our treat! So get registered, and we’ll see you there!
SPONSOR HIGHLIGHTS We are joined by some fabulous sponsors that help make our MS Bike such a great event, both for our participants and as a fundraiser. Please support the businesses that support the MS Society.
MEDIA SPONSORS - PLATINUM
EZ ROCK is a long-time supporter of the MS Society
and we welcome them back as a media sponsor for all our events, including the MS Bike. As well as
hearing them talk about the tour on the radio, you’ll catch them at the rest stops on EZ Hill, and you
may even be able to ride alongside GM, Nicole!
GOLD SPONSORS
SATURDAY SAVE-ON CELEBRATION - Thank
you to Save-On-Foods in Nelson for sponsor-ing dinner for our riders and key volunteers
during the tour, and for coming along with us with a team of 12 riders! Way to go!
SEE YOU AT THE FINISH! - Thank you to our
Finish Line Sponsor, ATCO Wood Products in Fruitvale. Give a wave to the ATCO Wood’n
Wheelers team who will be cycling with us as well!
JUICE FM & THE GOAT are both back again this year
helping to promote the MS Bike. Great supporters of the MS Society, they bring fun and enthusiasm to the
tour each year. Be sure to stop by their tent at Lakeside Park where they will be busy greeting our
riders as they finish their first day of the tour!
What is I Challenge MS?
Simply put, I Challenge MS is you. It's any personal activity, event or group gathering where you are making a difference and raising money for Canadians living with MS. Your challenge may be setting up a bake sale or coin drive in your community; it may be training for and running a marathon to collect pledges; it may be organizing a week long fundraising campaign at your workplace; or it might be crossing an item off your bucket list halfway around the world. No challenge is "small" when you are dedicating time, effort, and passion in the fight to end MS.
I Challenge MS is an online platform where you can access an incredible library of resources and tips, share updates about your Challenge, and easily gather secure donations. MS Society staff are also here to help you plan, develop, and run your challenge. If you need help getting started, call Lonnie at 1-800+268-7582, ext. 7259. Or visit the IChallengeMS website at:
http://mssoc.convio.net/site/PageServer?pagename=ichallenge_homepage
Disclaimer
The Multiple Sclerosis Society of Canada is an independent, voluntary health agency and does not approve, endorse or recommend any specific product or therapy, but provides
information to assist individuals in making their own decisions.
Show your support with a Banner Ad in
The West Kootenay Contact
The newsletter of the West Kootenay Chapter of the MS Society of Canada
$50/issue or $200/year (6 issues)
Contact Lonnie at 1-800-268-7582, ext. 7259 or email
Active Living Leaders is a three-part training program with a goal of helping you to develop into a peer mentor who is able to use the latest physical activity knowledge, sport resources, and transformational leadership principles to inform and motivate adults living with physical disabilities to lead more active lives. In other words, the goal of this program is to help you be an informed and confident champion of physical activity within your community! By the end of the Active Living Leaders Peer Mentor Training Program, you will know and understand:
1.The latest physical activity knowledge for people with a disability;
2. Where a person with a disability can get information on sport participation, as well as the resources available to them if they want to use sport as a way of staying active;
3. Some of the barriers people with physical disabilities face when it comes to being active, as well as some coping strategies they can employ in order to overcome those barriers; and
4. Some basic information on transformational leadership, a leadership style that looks to maximize the quality of the relationship with others. Transformational leader empower those who they lead and encourage them to go beyond what they thought was originally possible.
Call Lonnie at 1-800-268-7582, ext. 7259 if you are interested in taking this program.
Upon completion of the program, you will receive a certificate of completion from SCI Action
Canada.
Show your support
with a Card Ad
$25 per issue
or $100/year (6 issues)
West
Koote-
nay
Chapter
Wall of
Fame…
Page 6
Foot Care Clinic for West Kootenay Chapter Members
Are you interested in subsidised foot care? Is it difficult for
you to trim your toenails and remove callouses? Our
Chapter, with financial help from Kokanee Chapter IODE can
pay for $20 (about half) of each visit from a certified foot
care nurse, who would come to your home every six to
eight weeks to help keep your feet healthy. Contact Lonnie
at 1-800-268-7582, ext. 7259 if you have MS and
have difficulties caring for your feet.
SUPPORT GROUPS WANTED?:
Would you like to see a support group in your community?
One that is tailored just for you and people like you?
Perhaps for those newly diagnosed, youth, caregivers,
people with progressive MS, exercise buddies, coffee groups,
etc. Choose a theme and lets see if there are others who
would participate. Contact Lonnie at 1-800-268-7582, ext.
7259 and let us help you organize one.
West
Koote-
nay
Chapter
Wall of
Fame…
……are informal get-togethers of two or
more people who can share helpful tips,
information, resources, and experiences.
Phone a contact person for further
information.
West Kootenay Yoga for MS Group—Offers
regular, specialized yoga classes for people with
MS. Offered in Trail and Castlegar, and open to
all. Call Janice for more information at 250-365-
5428
Trail MS Support Group - meets the first
Wednesday each month at 10 am at Rose Wood
Village in the Games Room in Trail. For more
information, call Jenny at 250-364-1767 or Inge at
250-368-9493.
NEW!! Active Living with MS Support
Group—meets in Trail on the 2nd Thursday of
each month at 6 pm. Call Heidi at 250-231-3046
or email her at [email protected] for more
information.
NEW!! Valley Support group—just in the
formation stages. Call or email Kerry at 250-365-
0365 or [email protected]. Meetings are
the first Wednesday each month in Slocan at 11
am. Subject to change, so please call for details.
Self-Help Groups are formed
by volunteers who are
interested in bringing together
individuals and families whose
lives are affected by MS.
These groups operate
independently, supported by
the MS Society of Canada with
information and resources.
The West Kootenay Chapter
recognizes the importance of
support in one’s own
community, and of providing a
means for individuals and
families to reach out and
connect with each other. The
following is a list of
communities in which there
are volunteers who provide
support to individuals with MS
and their families. Each
community is unique in the
kind of support that is
available. For further
information on a particular
SELF-HELP/SUPPORT GROUPS
Keeping Cool in
Summer with MS For most people, summer is the most enjoyable season: the weather is perfect for taking vacations and spending time in the sun. But when you have MS, summer is more likely to be associated with worsening symptoms. MS is strongly associated with heat sensitivity, which manifests as a short-lived exacerbation. Symptoms occur when the person is exposed to heat, and go back to normal after the body’s temperature returns to normal. Most symptoms of MS will get worse when you are heat intolerant, most commonly increased numbness and tingling, more fatigue, blurry vision (known as Uhthoff’s sign) and more weakness.
Virtually all MS symptoms can be aggravated by heat, and sometimes that aggravation can occur when the body’s temperature is raised by as little as one quarter or one half of a degree in the body’s core temperature. And it’s not just hot weather that can do it; a hot shower or bath or a dip in a heated pool can cause the same problems.
A 2013 study conducted by scientists from the Kessler Foundation shows that hot weather correlates not only with cognitive
decline in MS patients (as it was confirmed in previous studies), but with MRI changes as well.
The MRI was taken after the subjects with MS were exposed to heat and asked to perform certain tasks to stimulate cognition. The MRI revealed and increased in
disease activity in certain areas of the brain: frontal, dorsolateral, prefrontal and parietal areas. In healthy subjects these MRI changes were not found.
Strategies to Deal with MS Heat Sensitivity There are lots of things you can do to keep yourself cool and avoid a symptoms flare. You should notice
Page 8
an improvement in your symptoms very quickly when the temperature decreases.
Keep out of the sun – When you have to be outside, seek out shade. In your home, try to keep the sun out as much as possible. Putting in drapes or blinds that block out the sun will help keep the temperature lower inside.
Invest in air conditioning – Make sure that you have an air conditioning unit in your living space. Many older homes in colder climates do not have physical air conditioning units installed in the house, so you may need to invest in a window or portable one. You can deduct the cost of cooling equipment as an expense with a doctor’s prescription.
Carry cold packs – Have cold packs handy when you have to spend time outdoors in the summer, as well as iced beverages and popsicles, to avoid an increase in your body’s temperature.
Dress appropriately – Wear a large sun hat and light-colored, loose and breathable clothes (cotton is ideal) that cover most of your body so your skin absorbs less of the sun’s heat. You may also want to consider a cooling vest or scarf.
Exercise in a cool room – Exercise in an air-conditioned room with an oscillating
fan running, and consider wearing items like bandanas and cooling vests.
Stay well-hydrated – Drinking enough water helps you stay healthy, and it also helps the body to maintain optimal core temperature.
Carry a fan – Have a small battery-powered fan with you all the time.
Take cooler showers – Keep the water warm (not hot) when you take a shower. Avoid hot tubs and replace long, hot baths with quick, warm showers.
Think about your bedroom – Keep the room’s temperature on the lower side, ideally between 65 and 72 degrees, and avoid sleeping with too many blankets. Sleeping alone may also be an option you want to consider, as it will reduce the amount of body heat you retain during the night.
Adjustable mattress – However, if you do not want to sleep alone, there are mattresses you can invest in that will allow you to adjust it to your desired temperature. Either way,
you are reducing the temperature around your body at night to make sure your symptoms do not worsen while you sleep.
With some careful planning and precautions you can conquer your MS heat sensitivity.
MS breakthrough: Replacing diseased immune system halts progression and allows
repair
JUNE 9, 2016 – OTTAWA, CANADA – A clinical trial published in The
Lancet, a top medical journal, shows that an intensive procedure that
completely wipes out the immune system and then regenerates a new
one using blood stem cells can eliminate all signs of damaging brain
inflammation in people with early, aggressive multiple sclerosis (MS),
and facilitate lasting recovery.
Led by Dr. Harold Atkins and Dr. Mark S. Freedman of The Ottawa Hospital
and the University of Ottawa, the trial included 24 participants who were
followed for up to 13 years. The $6.47 million trial was funded by the
MS Society of Canada and its affiliated Multiple Sclerosis Scientific
Research Foundation. The research was also supported by The Ottawa
Hospital Foundation, The Ottawa
Hospital Department of Medicine and Canadian Blood Services.
“Our trial is the first to show the complete, long-term suppression of
all inflammatory activity in people with MS,” said Dr. Atkins, a stem cell
transplant physician and scientist at The Ottawa Hospital, and associate
professor at the University of Ottawa.
“This is very exciting. However, it is important to note that this therapy
can have serious side effects and risks, and would only be appropriate
for a small proportion of people with very active MS. People with MS who
have had significant disability for a long time would likely not benefit.”
“This procedure should be considered
as a treatment option for people with early, aggressive MS,” said Dr.
Freedman, a neurologist and senior scientist at The Ottawa Hospital and
professor at the University of Ottawa. “Although this trial was relatively
small, it was intensive, with the longest prospective follow-up of any
such treatment group to date, and that is what makes the results so
convincing. However, this is a very
complex procedure that should only be performed at very specialized
centres with expertise in both the
Page 11
Page 11
management of MS
patients and blood stem cell transplantation.”
MS affects approximately 2.3 million
people around the world, causing symptoms that range from blurred
vision to extreme fatigue to partial or complete paralysis. It occurs
when the immune system – which normally protects against foreign
disease-causing organisms – mistakenly attacks the body’s own
central nervous system, which includes the brain, spinal cord and
optic nerve. Early in the disease, people often experience temporary
episodes of worsening symptoms accompanied by active inflammation
in the brain (called relapses),
whereas later on, disease progression is inevitable.
The trial evaluated a treatment called immunoablation and
autologous hematopoietic stem cell
transplantation (IAHSCT). The procedure begins by giving a person
medication to coax their hematopoietic stem cells to migrate
from their bone marrow into their blood. These stem cells are then
collected from the blood, purified and frozen. Then, high doses of
chemotherapy drugs are used to eliminate the person’s diseased
immune system. The stem cells are then transplanted back into the
same person, so that they can give rise to a new immune system that
has no “memory” of the previous
pattern of attacking the central nervous system.
The trial included 24 participants
with aggressive, relapsing MS. They
were followed for anywhere between four and 13 years after treatment
(with a median post-treatment follow up of 6.7 years).
After the treatment:
Not a single participant experienced a clinical relapse
(zero relapses in 179 patient-
years), whereas before treatment, the participants
experienced an average of 1.2 relapses per year (167 relapses
in 146 patient-years).
Not a single new active inflammatory lesion could be
detected in the brains of any of the participants (zero lesions on
327 MRI scans) whereas before the treatment, participants had
188 lesions on 48 scans.
Not a single participant required MS-specific drugs to control
their disease.
70 percent of participants experienced a complete stop in
disease progression.
The average rate of brain
shrinkage, typically a measure
that correlates with MS progression, returned to levels
associated with normal aging.
40 percent of participants
experienced some lasting
reversal of symptoms such as vision loss, muscle weakness
Page 11
Continued next page...
and balance problems.
Some participants were able to return to work or school, regain
the ability to drive, get married and have children.
Trial participant Jennifer Molson
was diagnosed with MS in 1996, when she was just 21. She
received her transplant in 2002.
“Before my transplant I was unable
to walk or work and was living in assisted care at The Ottawa
Hospital Rehabilitation Centre,”
she said. “Now I am able to walk independently, live in my own
home and work full time. I was
also able to get married, walk down the aisle with my
Dad and dance with my
husband. I’ve even gone downhill skiing.
Thanks to this research
I have been given a
second chance at life.”
“The MS Society is
proud to be a part of an important turning
point in the treatment
of MS,” said Yves Savoie, CEO and President of the MS Society of
Canada. “What started as a bold
idea has translated into a treatment option for people living
with highly active, relapsing MS. Publication of the results from this
study will inform clinicians of the
risks and benefits of the procedure, and pave the way for
further research which could help
people with all forms of MS.”
“A variation of this procedure has
been used to treat leukemia for
decades, but its use for auto-
immune diseases is relatively
new,” said Dr. Atkins, who is also
the Medical Director of the
Regenerative Medicine Program at
the Ottawa Hospital Research
Institute. “It is only used in very
severe cases because participants
face a significant risk of infection
and other side-effects, including
death.
The risks are similar to those faced
by leukemia patients undergoing
this kind of treatment.”
Indeed, one participant in this
study died of liver failure due to
the treatment and another
required intensive care for liver
complications. The treatment
regimen was modified over the
course of the study to reduce
toxicity, but all participants still
developed fevers, which were
frequently associated with
infections.
“Several recent clinical trials from
other groups have examined this
procedure in people with MS,”
said Dr. Freedman, who is also
the Director of MS Research at
The Ottawa Hospital. “Our study is
unique in that we used a stronger
cocktail of drugs to eliminate the
immune system, we followed the
participants for a very long time,
and the majority of our
participants have had significant,
long-lasting responses.”
People who are interested in this
therapy should speak with their
own neurologist, who can request
a referral to The Ottawa Hospital
MS Clinic or another major
hospital with experience in this
area. Note that The Ottawa
Hospital cannot treat people
without valid Canadian health
coverage.
This study was approved by the Ottawa Health Sciences Network
Research Ethics Board, and is
registered at https://clinicaltrials.gov/ct2/show/
NCT01099930. The lead
researchers are affiliated with the Stem Cell Network, the Ontario
Institute for Regenerative
Medicine and the University of Ottawa Brain and Mind Research
Institute.
“We thank the patients from
across Canada who participated in this clinical trial, as well as their
family members,” said Marjorie
Bowman, trial coordinator and advanced practice nurse at The
Ottawa Hospital. “Their courage
and dedication are remarkable.”
Full reference: “Immunoablation and
autologous haemopoietic stem-cell
transplantation for aggressive multiple
sclerosis: a multicentre single-group phase 2
trial.” Harold L Atkins, Marjorie Bowman,
David Allan, Grizel Anstee, Douglas L Arnold,
Amit Bar-Or, Isabelle Bence-Bruckler, Paul
Birch, Christopher Bredeson, Jacqueline
Chen, Dean Fergusson, Mike Halpenny, Linda
Hamelin, Lothar Huebsch, Brian Hutton,
Pierre Laneuville, Yves Lapierre, Hyunwoo
Lee, Lisa Martin, Sheryl McDiarmid, Paul
O’Connor, Timothy Ramsay, Mitchell Sabloff,
Lisa Walker, Mark S Freedman. The Lancet.
E-pub June 9, 2016.
THE CLUMSY COOK Shannon Jones
Well Summer is definitely here and the heat will only
increase as the month goes by. If you are anything
like me, the worse the heat gets, the worse your health
will get. And while it may be only temporary, a
homemade popsicle is a tasty way to get a nice rush
of iciness into your body to help cool you down. The
possible combinations are endless, limited only by
your imagination. Here are just a few of the many
ways to make a delicious Summer full of cooling
popsicles! :)
FROZEN JELLO POPS
Kids big and small will love these fruity summer
sweet treats, no matter what flavour combo you
make!
1 package jello powder, 4 serving size, any
flavour (regular or sugar free)
(optional liquids) 1 cup hot water + 1 cup cold
water
(optional liquids) 1 cup juice, heated + 1 cup
juice, cold
(optional liquids) 1 can, about 398ml, fruit pieces
in juice + 1 cup hot water
(optional fruit ideas) - canned - peaches, pears,
cherries, crushed or tidbit pineapple, fruit
cocktail, mandarin oranges - fresh -
blueberries, strawberries, blackberries,
raspberries, grapes, bananas, peaches, pears
(never use fresh pineapple in jello)
Pick your jello flavour and your choice of liquids.
Dissolve powder in the hot liquid, then add the cold
liquid. If using fruit, fresh or canned, chop into small
pieces before adding. Distribute chosen fruit loosely
into popsicle molds. Pour prepared jello over top,
leaving a ¼ inch space at the top for expansion once
frozen.
Use your imagination with this. You can make
colourful tasty layers by freezing a layer for a couple
hours before adding the next. Be sure to leave enough
room in the last layer for your inserted handle! Use
various flavours of jello and/or fruit in each layer or
do a solid flavour with or without fruit. Do what you
like!
Some great flavour combos are lime jello with
pineapple, orange jello with peaches, lemon jello with
pears, cherry jello with fruit cocktail or anything else
you want to try.
Freeze at least 12 hours. Unmold under hot water and
enjoy!
FROZEN PUDDING POPS
Be prepared to make lots of these wonderful creamy
treats in every combination possible this summer!
1 package pudding mix, 4 serving size, any
flavour (regular or sugar free)
(optional liquids) 2 cups of any type of milk, such
as 2%, skim milk, almond milk, coconut milk
(optional creamy add-ins) ½ cup of softened
cream cheese or cool whip or whipped
coconut cream or ¼ cup softened peanut or
other nut butters
(optional fruit/solids ideas) berries, grapes,
bananas, peaches, mini chocolate chips, small
candies
Pick your pudding mix flavour and type of liquid.
Blend according to package directions. Beat or fold in
any optional creamy add-ins if using. Fold in any
optional solids if using. Spoon pudding mix into your
popsicle molds. Leave ¼ inch space at the top for
expansion once frozen.
Have fun with this by layering different types of
puddings and add-ins. No need to freeze between
layers. Let the kids join in and make their own
personal popsicles. Layer chocolate pudding with
practically any other flavour for delicious striped
pudding pops (butterscotch, banana, pistachio,
vanilla, etc..) or just make solid flavoured pops with
or without add-ins. Combine it however you like.
Page 15
Volunteers always welcomed!
With busy lives, it can be hard to find time to volunteer.
However, the benefits of volunteering are enormous to
you, your family, and your community. The right match
can help you find friends, reach out to the community,
learn new skills, and even advance your career.
Volunteering can also help protect your mental and
physical health.
Do you have special skills that would benefit our Chapter?
A great phone voice, organizational skills, financial, legal
or medical background? Able to do physical work? Own a
truck that would help us during our fundraising events?
Maybe you could volunteer in our Resource Centre for
three hours a week, or sit on a planning committee for
educational events, fundraisers or public awareness?
Can you help us collect new, interesting items
that we can sell at our Taste of Nelson Silent
Auction in September? Please contact Tara at
1-800-268-7582, ext. 7254 or
for more information.
Printed and Distributed by
622 Front Street, Nelson, BC V1l 4B7 Tel: 250-354-1299
Box 10, 518 Lake Street
Nelson BC V1L 4C6
1-800-268-7582
Programs/Services, ext. 7259
Fundraising, ext. 7254
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.
The West Kootenay
Chapter gratefully
acknowledges the
financial assistance of
the Province of BC in
producing our
WEST KOOTENAY CHAPTER, MS SOCIETY OF CANADA
