shared voices - ms society · 2016-06-21 · 4 shared voices | summer 2016 in the bookworm’s...
TRANSCRIPT
1
the voice of the lower mainland chapter
Shared VoicesSummer 2016
After being diagnosed with MS in 1990, I thought my independent travel days were over. My desire to see more of the Silk Road, and my wife Noriyo’s encouragement, however, resulted in 2013, in an eight-week summer holiday with our kids aged 4 and 13 to Turkey, Uzbekistan, and Iran. We travelled independently in Iran and Turkey, but in Uzbekistan used and recommend Advantour.com for travel to the “Stans.”
Despite the bad press, we found people in Islamic countries to be the most welcoming. In various cities, locals went far out of their way to help, even inviting us to stay with them. Many of the old sites were, of course, not wheelchair accessible, but with the help of strangers we managed quite well.
There were adventures in hygiene: squat toilets in rural Iran; and then a new Turkish hotel with glass-walled showers and nothing to hold on to for support. A shower chair was not available, but the staff promptly purchased one for me: ask and you might receive.
Problems were created for us by the Canadian government having severed diplomatic ties with Iran a few years earlier; it required us to get our visas abroad. We sent the visa fee to a travel agency in Germany, and received our visas at the Iranian consulate in Istanbul, Turkey.
With the international sanctions against Iran in effect at the time, credit cards, travelers’ cheques and wire transfers were not available: we needed to carry thousands in cash, but never once had any trouble. The trailer-mounted
ATM we saw in a public park attested to public order in Iran.
Temperatures often exceeded 40OC. An escort with Turkish Airlines assisted me from the check-in counter to the gate and then across the tarmac to the plane. It was most welcome!
Also memorable was the honesty of Iranians. A taxi driver appeared at breakfast in our hotel one morning in Yazd to apologize and return about $3 he had overcharged us the day before. We refused to accept, so instead he gave us a ride to our next destination. Most unforgettable was the
by paul esslinger
(Below Left) Toudeshk village tour and locals (Below Middle) Trailer-mounted ATM (Below Right) Turkish police “interrogate” my daughter
The Road Not Taken
Shared Voices | Summer 20162
Summer is Hereby brenda worthington
If you’re like me, you enjoy the special cold coffee and tea drinks, watermelon cubes straight from the fridge, and ice cream. It’s easy to appreciate the season’s long days, fresh fruit and vegetables, brilliant flower colors, gorgeous trees…the list goes on and on. And it’s always fun to sit in the shade at the park and read a light summer novel.
On another note…For twelve years, Derek Sampert has been Shared Voice’s layout person:
Editorial
friendliness and courtesy shown us by complete strangers. The Islamic proverb, “A guest is a gift of God” may have accounted for our warm reception.
High points of the trip were staying with local Iranians in their homes: Taku taku homestay in Toudeshk (Tak-Taku Guesthouse); and Khoone Geli guesthouse in Tonekabon operated by an Iranian doctor, Farzin. He had lived in Europe for 20 years before returning to Iran to start his guesthouse/guiding business.
While in Tonekabon, Farzin arranged for us to visit Mohammed Ali, a 40-ish man housebound with secondary progressive MS. Mohammed had farmed previously. We visited him together with the head of the Iran MS society
Cont’d from Page OneTonekabon chapter iranms.ir. The international sanctions affected them as well: they had limited MS medications over the years. As we were nearing the end of our travels (I can still walk short distances with a cane), I used the opportunity to help by leaving my wheelchair with him, to the family’s great appreciation. A wheelchair is a vast improvement over riding in a wheelbarrow.
4720 Kingsway, Suite 1103, Metrotower II, Burnaby, BC V5H 4N2 604.689.3144 1.800.268.7582 [email protected] mssociety.ca/chapter/lower-mainland-chapter
Editorial Committee:
Brenda Worthington (Editor) [email protected] Hoffmann (Co-Editor) [email protected] McGowan [email protected] Stopps [email protected] Hurtig [email protected] Frank [email protected] Jones [email protected] Hall [email protected]
Contributors:
Writers: Janet Uribe, Diana Guenther, Sydney Spraggs, Paul Esslinger Layout: Katie Lapi
Shared Voices is published four times a year by the Lower Mainland Chapter of the MS Society of Canada, BC and Yukon Division. The contents may be reprinted with customary credit. Your submissions to Shared Voices are encouraged. Forward these and any address changes with the mailing label to the above address.The MS Society strongly believes in the freedom of speech. The articles published in Shared Voices present different points of view, and are not necessarily shared by the MS Society, Lower Mainland Chapter.
Shared Voices
witty graphics that draw readers in as well as article placement that makes it easier on the MS eye are due to his careful work. His passion in helping the MS Society meant staying long after other commitments would have forced others to resign. We want him to know how much we appreciate him, and wish him a slightly less stressed and very exciting future.
Thank you, Derek, and the best of summers to you all!
Mohammed Ali and mother
Shared Voices | Summer 2016 3
Sepsis – Nothing to Take LightlyVoices
Ed note: On the Voices page, readers share their experiences. When Carol Grypiuk told us about her unexpected bladder infection last issue, Janet Uribe immediately responded. Her story underlines Carol’s warning. Thank you to both.
I was diagnosed with MS in July 1993 and started using a catheter in May 2001.
Early May 2014, I got up, but was back in bed a couple of hours later as I did not feel well. I napped an hour and woke up with chills. I took my temperature a few times and it was steadily increasing. My daughter insisted on calling an ambulance as I was becoming confused. The paramedics were not exactly sympathetic to my shakes, complaints of fever and vomiting. Once inside the ambulance, I started having pain which moved all over my body. I had explained that I had MS and most likely a bladder infection was causing my troubles. He kept asking if I took a lot of drugs or if I had fibromyalgia? No, just MS, thanks!
We arrived in emergency and one of the paramedics put in a saline lock should I need an IV. No vitals were taken at home, in the ambulance or when we arrived at triage. I last remember being transferred to the treatment area and meeting
by janet uribe
the nurse before I became unconscious. I woke up three hours later in acute care. The specialist looked at me and said, ‘Do you know how good you look for someone as sick as you are?!’ Nope, how sick am I? He told me I had sepsis! I spent two nights in the hospital on IV antibiotics and they sent me home on two more weeks of oral antibiotics. Recovery was slow; it took forever to get back to my normal.
Nineteen months later, it struck again — I didn’t feel well...I took my temperature...it was slightly elevated. Within fifteen minutes, it was rapidly increasing. I wanted to sleep but my husband wisely called the ambulance. He told the 911 operator I’d had sepsis before. The paramedics noted my heart rate was higher, too. I was quickly transported to emergency, and then whisked into acute care. I was seen almost immediately and IV antibiotics were started. I spent
two nights in the hospital and was sent home on a month’s prescription. A large kidney stone had been noted during a scan. It is considered a potential infection source for another sepsis incident so I had to remain on antibiotics until it could be removed.
Sepsis is a complication of a bacterial infection: once it gets into the blood stream can be lethal or cause severe complications if not caught and treated quickly. It is far more common than people realize, especially for those with compromised immune systems. We all need to get educated. It could mean saving a life; possibly your own. I now know that a rapidly increasing temperature and a heart rate of over 100 means I need medical help; it’s not the time for a nap.
Emergency Sign by flickr/Open Grid Scheduler / Grid Engine
Shared Voices | Summer 20164
In The Bookworm’s Cornerby anne stopps
Overcoming Multiple Sclerosis (an Evidence-Based Guide to Recovery)by Professor George JelinekAllen & Unwin, Crows Nest, NSW, Australia 2010
I have reviewed many books in the past few years relating to health (especially any relating to multiple sclerosis), but this book by George Jelinek covers everything you could possibly need to know on the subject. Though he does discuss all types of modern pharmaceuticals, his holistic approach really encourages patients to consider more.
The author is an emergency physician practising in Australia at the University of Western Australia. His mother had multiple sclerosis for over 20 years and became very disabled. Dr. Jelinek was diagnosed with MS at 45 and not wanting to go down the same path as his mother, set out to scour the medical research literature, the internet and the popular press for other ways to manage the disease. His findings discovered that despite MS being triggered by multiple environmental agents, the core principles to staying well is a lifestyle change. His keys to recovery include eating a low-fat diet, having adequate sunlight, exercising, meditating daily, preventing depression and resolving emotional issues.
Bookworm
In his initial research he discovered Dr. Roy Swank of the Swank Multiple Sclerosis Clinic in Portland, Oregon (he wrote The Multiple Sclerosis Diet Book in 1950). Dr. Swank observed that the incidence of MS seemed to follow consumption of saturated fats, and his studies found the countries with the least daily fat intake had the lowest rate of MS. A 34-year and then a 50-year study found that if people with MS can rigorously follow the diet with no more than 10-15g of saturated fat per day, they can expect to “survive and be ambulant and otherwise normal to an advanced age”.
The book goes into great detail on dietary fats, supplements, sunlight exposure and vitamin D, exercise, stress, mind-body connection, pharmaceuticals, new drug therapies, pain and fatigue. A chapter on the recovery program gives the complete diet to keep active.
Dr. Jelinek has an extensive website with information, news and research, community and MS A to Z. Click on Recovery Program for the
complete rundown of the diet at overcomingms.org. He wrote another book in 2013 entitled Recovering from Multiple Sclerosis, with real-life stories of hope and inspiration of people regaining their health after following the low-fat diet. Look for it in the next Shared Voices.
Dr. Jelinek was diagnosed with MS at 45
and not wanting to go down the same path
as his mother, set out to scour the medical
research literature, the internet and the
popular press for other ways to manage the
disease.
Shared Voices | Summer 2016 5
Tips and Whatevers — Incontinence
Helping Ourselves
No one loves to discuss this all-too-frequent symptom. However, a study from April 2016 by the Capital Medical University, Beijing, reported 70% of people who have MS have urinary tract symptoms. While it may be an embarrassing chat choice, it’s on our minds.
compiled by committee members
“This is my experience on the subject of incontinence and should not be mistaken for qualified medical advice.
After the initial shock of having to catheterize, my sister had me laughing hysterically about taking my metal reusable catheter through airport security. So I bought a box of 100 disposable intermittent female catheters. I simply do not have the income to purchase one box per week (that is how frequently I was going through them at first, but it has
I would love to hear of the modifications that make your life easier, and that you would like to share with others. Please email me at [email protected]. Put “Shared Voices” in the subject line so I don’t skip over it as spam.
Submit Your Tip
BurnabyIrene 604.951.3563
MetrotownSam 604.273.7574
North Shore Lower Lonsdale Gerry 604.987.6701Success MS Richard [email protected] Companions Mary 604.984.0144
RichmondPat 604.271.6065
SurreyBarb 778.373.0284
Tri-CitiesClaudette 604.942.5561
White RockBridgit 604.541.4091
Vancouver Kitsilano Wendy [email protected] Van Deanne 604.432.9111Wahls Protocol Jennifer 604.874.0797Maple Ridge/Pitt MeadowsGreg 604.895.8202
LangleyMichele 604.882.9120 Sherry 604.888.7855
Langley-AreaParents and/or Mid Career Group Tracy [email protected]
The Younger Persons With MS604.689.3144
Family Members Group604.689.3144
Self Help Groups
reduced greatly after working with medications, my doctor, urologist, and neurologist).”
“Disposable undergarments I call Pull-Ups-For-Parents. As luck would have it, I need to make them go further, I place a wide strip of masking tape along the perineum so that I can easily remove and replace an incontinence pad whenever necessary. This can make them last for 3 or 4 days.”
“I rinse the catheter out and wrap it in a paper towel. When I have collected 20 or 30, I unwrap them, put them in a special pot, boil them for 15 to 20 minutes, and then wrap them again in a clean paper towel ready for me to reuse. Once it has been used a few times, it breaks down and goes in the garbage.”
Shared Voices | Summer 20166
WestJet westjet.com/guest/en/travel/special-arrangements/special-needs/personal-attendants.shtml
Contact small regional airlines for their eligibility criteria.
Out & About
PaddleboardAn accessible paddleboard
program is being offered at False Creek Community Centre
This peaceful stretch of water is surrounded by parks and condos, with beautiful views of Vancouver at its finest.
Onit paddleboards from Access Revolution (founder Jordan Kerton) are designed for wheelchair use. Paddleboarding, a fast-growing sport, is a stress-busting way of enjoying an hour on the water.
If you’re travelling with an attendant within Canada, all Canadian airlines have a policy that allows your attendant to travel for the price of taxes. You must be pre-approved by the medical department of the airline that you’re travelling on.
Air CanadaAn attendant may travel
with you at the charge of tax if you are travelling only within
Travelling with an Attendant in Canada
When: May 25 – August 27Cost: $10 per 60 minute paddling sessionTo book either: Eric Molendyk 604.688.6464 ext. 117 or [email protected]
BCMOS is launching two new adventure programs in Metro Vancouver for people with disabilities. Both will run through the summer months.
FlightIn conjunction with King
George Aviation in South Surrey, you can fly a powered aircraft using hand controls to get a taste of flying. You will fly an ultralight plane, a two-seat fixed-wing aircraft.
Flying will be the second Tuesday of each month, April – October.
Cost: $25 for a 20 minute flight.
Check out the website and video: bcmos.org/main/flying.php
Adventure Programs
Canada on: An Air Canada flight or an Air Canada Express flight operated by Jazz, Sky Regional, Air Georgian and Exploits Valley Air.
All applicable taxes remain payable.
Print a copy of the Air Canada Fitness for Travel form and Follow the instructions: aircanada.com/en/travelinfo/before/specialneeds/attendant.html
Shared Voices | Summer 2016 7
Out & AboutEvents Around Town
Caribbean Days FestivalThis event draws a crowd of exuberant
fun-lovers to North Vancouver’s Waterfront Park for a weekend of parading, dining and dancing in the sunshine.Dates: July 23 – 24Location: Waterfront ParkWebsite: caribbeandays.ca/events
Summer Sundays Concert Series Join us for concerts, from Blues to jazz to
swing.Dates: July 3 – August 29 Time: 6 – 7:45 pmCost: Free admission Location: Beside Bob Prittie Library – Metrotown Branch at Kingsborough and MacKay.Website: burnaby.ca/Things-To-Do/Festivals-and-Events/Summer-Fun-at-Civic-Square.html
London Heritage FarmThis 1898 London Farm House has been fully
restored and furnished to illustrate rural life in Richmond between 1890 and 1920. The lower level of the house, including the Tea Room, is wheelchair accessible.
Location: 6511 Dyke Road, Richmond, BCPhone: 604.271.5220 Website: londonfarm.caFarm: Cost: By donation Hours: Wed – Fri 12 – 5 pmTea Room: Cost: $12.50/person Hours: Sat – Sun 12 – 5 pm
Fork and Finger Foodie EventCalling all Foodies! Join us to celebrate the
unique and delicious restaurants of Downtown Langley at the Fork & Finger Foodie Event. Visit McBurney Plaza for exciting live demonstrations by local chefs and live music performances throughout the day. $5 Sample plates will be available at select restaurants, along with other exciting event day specials.
Date: Saturday, August 27Hours: 11 am – 4 pmLocation: Fraser Highway between 204th & 206th Streets
North Vancouver Burnaby
Langley Richmond
Shared Voices | Summer 20168
Searching for BalanceVoices
In my ongoing quest for better health, the most important thing I have learned is the principle of creating a pH balance in my own body. What you eat and how you live always affects your acid alkaline balance, and I’m sharing a summary, hoping it will help others.
If we eat a lot of highly processed foods such as bread and pasta made with white flour and sugar plus fatty meat and dairy (which have an acid forming effect on your system), it can lead to health issues. An alkaline diet primarily moves the balance to fresh fruit and vegetables, whole grains, wholesome protein sources such as beans and legumes, and healthy oils such as olive or flax seed. The US National Library of Medicine concludes (ncbi.nlm.nih.gov/pmc/articles/PMC3195546) “it would be prudent to consider an alkaline diet to reduce morbidity and mortality of chronic disease that are plaguing our aging population”.
by anne stopps
Doing a few simple things will solve many of our nutritional worries.
1. Eat lots of fruit and vegetables • Keep vegetables cut up in
the fridge and have a big bowl of colourful fruits on your counter to snack on.
• Eat salad with your lunch and dinner; keep a salad made up in advance with all of the greens minus salad dressing, cucumbers and tomatoes, which you can add later. Alternately, try a smoothie. (A recipe is in this issue.)
2. Eat 80 percent alkaline & 20 percent acidic foods by volume daily. Most fruit and vegetables have an alkaline-forming effect on our bodies and most grains, processed and animal products have an acid-forming effect.
Most fruit and vegetables
have an alkaline-forming
effect on our bodies and
most grains, processed and
animal products have an
acid-forming effect.
There are many websites with printable food charts that show the most alkaline to most acidic, plus give correct combinations. You can also buy test strips at a health food store to instantly show your pH balance.
Here are a couple of websites for you to check out:
• acidalkalinediet.net• natural-health-zone.com• erasems.org — type:
“august.diet” under news for his list. The website is setup as a CWW (Centre without Walls) program and includes six neurology specialists across the USA, including Dr. David Hafler from Yale and Dr. Peter Calabresi from John Hopkins, who are all studying the effects of diet and MS.
The MS Society strongly believes in the freedom of speech. The articles published in Shared Voices present different points of view, and are not necessarily shared by the MS Society, Lower Mainland Chapter
Shared Voices | Summer 2016 9
Power Spinach Salad
Ingredients:1 pound fresh spinach2 tablespoons lemon juice1/4 cup olive oilA few drops of liquid honeyTamari or Bragg Liquid Aminos to taste1 avocado, diced1/4 cup chopped walnuts, (can be roasted until golden to enhance flavour)2 mandarin oranges
Recipes
healthista.com
Alkaline mint-chocolate ice cream smoothie
This recipe is low-fat, packed full of nutrients and lactose-free alternative to dairy ice cream. The key to this recipe is some really ripe frozen bananas in your freezer, and a high speed blender to make your ice cream very smooth.
Ingredients:4 very ripe, frozen bananas4 small dates or 2 large medjool dates5 ml carob or cocoa powder200 ml almond milkA few sprigs of fresh mint leaves
Directions:Put all ingredients in the blender for 1-2 minutes. Add more or less milk for your preferred consistency. Garnish with a sprig of mint.
Serves 1-2 (600 calories total)
Greens are the highest alkaline-forming foods and are full of vitamins A, K, and D. Adding spinach to your meal is an excellent way to alkalize your diet. This makes a very simple and tasty salad.
Directions:1. Wash and trim spinach;
pat dry with paper towels.2. Combine lemon juice,
oil, honey and Tamari or Braggs in large bowl; add avocado cubes, coating well with the dressing.
3. Toss spinach and walnuts with avocado and dressing.
4. Add mandarin orange sections and enjoy. “Spinach” by flickr/kerotab (CC BY 2.0)
“Avocado” by flickr/arsheffield (CC BY-NC 2.0)
Shared Voices | Summer 201610
On Saturday, October 15th an informative workshop for people recently diagnosed with MS will be held at the Accent Inn, Burnaby. Come learn more from professionals in this field and hear from a panel of people who are living well with MS.
To register, please contact Stacey Bradshaw at the Lower Mainland Chapter at 604.689.3144 or [email protected].
We thank the Province of British Columbia for their financial support of this workshop.
Chapter News
Newly Diagnosed Workshop
Off Balance Dragonboat Team Update
Our Off Balance Dragon Boat Team is back on the water for the eleventh year. Each year we have some new paddlers join us and experience the delight of being on the water and moving under our own power, quite unlike being on land!
On April 27th, our team was invited to join Eye of the Dragon, a team of paddlers with
visual challenges, to celebrate the opening of new adapted docks at Dragon Zone near Science World. Included in this new renovation will be a hydrolic lift to help those with disabilities participate in water sports including dragon boating. We paddled across False Creek to Concord Pacific where dignitaries joined us to
by sydney spraggs
Cook with Me Independence Celebration
This year on World MS Day, Wednesday May 25th, an enthusiastic group gathered at the Blusson Spinal Cord Centre in Vancouver to participate in the Cook with Me event with certified nutritionist Kari McDougall. This event aimed to celebrate all the ways that people affected by MS can maintain their independence, and
what better way to do so than by cooking delicious and nutritious food!
The group started the class with a presentation about nutrition including information about inflammatory foods, gluten-free alternatives and healthy fats. Next, they started cooking (and sampling!!) a delicious southwest quinoa salad and a creamy avocado pasta. The group left with full stomachs and happy hearts knowing they had gained some fun skills and useful tips.
To check out the presentation and recipes from this cooking class, visit the MS Society website under the News section of the Lower Mainland Chapter mssociety.ca/resources/news/article/world-ms-day-cooking-class
paddle back to Dragon Zone to celebrate.
Join Off Balance on the water every Sunday morning leaving Alder Bay about 10:30 and heading for Science World.
Contact me by phone 604.879.7973 or email [email protected]
Shared Voices | Summer 2016 11
Caregiver’s Corner
On that cool cloudy day, just as the train was pulling into the station in Paris, it happened. With my sub-heroic powers I broke the metal handle off Brenda’s wheelchair. You know, the one you push it with? It might have been my unforeseen strength, or the submarine size piece of luggage I sometimes rested on it; either way panic started to set in. We had four days to discover Paris and non-workable wheels. It felt like my cape was gone.
We made it to the hotel, where the first of our superheroes was on shift, Jack, an American in Paris. With fluent English and a heart of gold, he phoned around, trying to find a bike shop to fix the impossible. Then a motorbike store - also no luck. Finally
by dorit hoffmann
a medical equipment place within walking distance. I found my powers and laughs again as I steered with one handle, other hand on the armrest, around lamp posts; countless people;
even up and down curbs; right to the door of A2; just before closing time; finally to be greeted by hero #2, Claude. He shook his head seeing the damage, disappeared and re-appeared with the most beautiful green rental chair — our little green lantern. He saved the days! And we were determined to conquer Paris, to walk as much as the wheels would give. After all, it was Walk to end MS day in Vancouver, and three days later World MS Day and we were on a mission. We totaled about 36 mi or 57 km discovering the café’s, croissants, sights and wonderful people all around Paris. Sometimes we walked around with our “We will conquer MS!” and “Nous allons vaincre la sclérose en plaques!” on the back; we threw a penny into the Trevi Fountain in Rome for good luck, we touched
Gaudi’s good fortune snake at Sagrada Familia in Barcelona, sent out a special prayer at Paris’ Notre Dame and donated to the MS Walk — something will end MS. We’ve called on all the super powers and are still so very grateful for all the little heroes along this journey. And our li’l green lantern.
Spreading the word at Notre Dame
Saved by A2
The Green Lantern saved World MS Day
We totaled about 36 mi
or 57 km discovering the
café’s, croissants, sights and
wonderful people all
around Paris.
12
The Lower Mainland Chapter acknowledges the financial assistance of the Province of British Columbia.
Canada Post Publication Number 40063333
Return Undeliverable CanadianAddresses to Circulation Dept:4720 Kingsway, Suite 1103, Metrotower II, Burnaby, BC V5H 4N2
World MS Day Lights UpThere’s something really
special about seeing famous landmarks lit up for World MS Day. Perhaps it is because, as the MS Society of Canada says, it helps people with MS to look up and know that they’re not alone. Seeing different places all over the world lit up highlights this. Check out worldmsday.org
Niagara Falls, Canada Titan Crane, United Kingdom
Capitolio, Puerto Rico
“Looking forward, I
would like to remove
the stigma associated
with the disease that
has prevented so
many people from
pursuing their dreams.
Unfortunately, it’s
still very common
for people who are
suffering with MS to
keep it very secretive.
Especially in their
place of work. It’s days
like today that can help
change all of that –
share your story and
let’s band together to
encourage one another
to keep after our
dreams.”
— JACk OSBORNE (in an open letter on
World MS Day)
• Canada, Niagara Falls and the CN Tower
• Uruguay, Palace of the Laws• United Kingdom, Titan
Crane • Puerto Rico, Capitolio• Greece, White Tower• USA, West Virginia Building• Egypt, Faculty of medicine
at Cairo University
Cairo University, Egypt