PHA Canada’s Monthly Electronic Newsletter
Vol 3. No. 3 March 2013
MAY 5 IS WORLD PH DAY: HELP US CELEBRATE
In 2012, PH Associations around the world celebrated World PH Day for the first time. At the time, the largest celebration was held in Europe (where the idea originated) and additional activities, on a smaller scale, took place in other parts of the world.
This year, the international PH community is working together very hard to ensure that World PH Day becomes an increasingly important event: one that brings together the PH community around the world to show that while PH may be a rare disease, there are hundreds of thousands of people across the world living with it, that our community reaches beyond the borders of individual countries, and that the fight against PH is truly a global one.
For the past three months, we have been working in collaboration with other PH associations around the world to put together a unified campaign for World PH Day. The theme, as chosen by PH Associations around the world, for this year’s World PH Day is: A Need for Early Diagnosis.
Each country will be doing something a little different and unique but we will all be doing it under this theme. A World PH Day website, a collaboration between all of the PH Associations, is being designed and we are all in the process of planning our own events.
I’ve sent my photo, what else can I do to help celebrate World PH Day?
The "Lend a Hand for PH" campaign is back! We are encouraging you to order a Lend a Hand for PH kit, which contains everything you need to set up an awareness table and collect some hands on May 5th.
Hospitals, community centres, libraries, shopping centres and any other public places are great areas to do this. Your event can be strictly an awareness one: tell passers by about PH and World PH Day, share your story and ask them to sign a hand in solidarity with PHers around the world or you can add a fundraising component and ask participants to donate a loonie or toonie when they sign a hand. Kits will be available starting in early April to allow you plenty of time to prepare your activity. Pre-order today at email@example.com
All hands collected during World PH Day will be displayed on a Lend a Hand banner at this year's National Conference. In 2011, we collected a total of 1964 hands, help us beat that total and get to 2500 this year!
Other ways to get involved
The Lend a Hand campaign is a great and easy way to get involved but, if you prefer, there are many other activities you can do to raise awareness of World PH Day.
Send us your “need for early diagnosis” photo, or share your full story with us (firstname.lastname@example.org)
Create a World PH Day personal page (or update your existing page with World PH Day info) www.PHACanada.ca/PersonalPages
Pennies for PH - help the government collect all the pennies still floating around out there and put them towards a good cause - helping in the fight against PH and raising awareness!
Organize a 6-minute walk, a house party, or a workplace giving event. PHA Canada has information and help with planning all of these events in our new Fundraising Guide: see the resource tip of the month section below
No matter how big or small your plans, get out there on May 5th and help us show that PH has a whole world of people PHighting back against it.
Write to us at email@example.com
and tell us what you will be doing: we can help you to publicize your event and provide you with any materials you may need. Stay tuned for more information on World PH Day activities in the next issue of The Pulse.
MARCH IS NUTRITION MONTH
Last month, we celebrated our hearts in the figurative sense and there were definitely a few pieces of chocolate on the menu for most. This month we're celebrating ways to keep our hearts healthy by eating well.
March is Nutrition Month - this is a month dedicated to promoting healthy eating habits and choices. We have all heard "eat your veggies" and yes, it is important to eat your vegetables, but there are so many other ways to make sure you keep your nutrition on track.
As PH patients, you have most likely been told countless times by your physicians and nurses, maintaining a low sodium diet is critical to staying healthy with PH. One of the best ways to do this is to avoid highly processed foods.
There are ways to enjoy your favourite foods by doing your research, making a plan and finding healthy alternatives. This sounds like a lot of work and it is in the short term. In the long run, creating personalized nutrition plans helps us track and create new nutrition habits.
Here are five steps you can follow this month to help you keep your nutrition on track and support a healthier you:
1. Plan your meals
. This is a great opportunity to pick out those easy or complicated recipes you have always wanted to try. Keep it interesting and healthy.
2. Make a grocery list.
When you have a list and you stick to it, you can avoid being tempted by the treats that can be found in the grocery store.
3. Keep a food diary.
Yes, it can sometimes be a pain to write down everything you eat but much like a budget, it's a great tracking tool. Think of your food as energy and you want to track what kind of energy you are putting into your tummy account. This helps you find trouble areas and modify your meal plans accordingly. This will also help you track how much sodium you are consuming and can be very helpful for your nurse coordinator to see if you start having heart failure issues.
4. Keep your sodium low.
Nutrition is important and in a culture where food is associated with social activities, it helps to make it fun. Look for new low-sodium receipes you can try. Experiment with vegetables or fruit you've never heard of and consider having theme nights where you try different types of dishes. Keep your meals fun and healthy.
5. Keep hydrated.
Water is the key to a happy mind and digestive system.
PHA Canada includes an Ask Your Nurse section in our Connections Magazine. If you have any questions about your nutrition options or you are looking for resources to help you put together your own plan, send us a message at firstname.lastname@example.org
For more information about Nutrition Month, please visit the Dietitians of Canada
DISCLAIMER: This article is for information only and is not shared as medical advice. Please consult your physician for your personalized medical and nutritional advice.
REMINDER: SPRING CONNECTIONS
We’ll be publishing our next issue of Connections in the Spring and we would like to hear from you. If you have a story you would like to share, an exciting project or some fun PH tips, please send us a message at email@example.com.
Deadline for submissions extended to March 15, 2013.
Connections – The Official Magazine of the PH Community
RESOURCE TIP OF THE MONTH: PHA CANADA GUIDE TO FUNDRAISING RELEASED
Have you been thinking that you would like to get involved in some way, and maybe organize a fundraiser, but have not been sure how to get started?
We are thrilled to announce the release of the PHA Canada Guide to Fundraising. This guide is a 40+ page resource containing all the information you need to get your fundraiser going. The guide is divided into three parts and contains information, step-by-steps, ideas and templates for: organizing a special event, fundraising in the workplace, and fundraising through special occasions.
The guide also includes a USB flashdrive, which contains electronic versions of all of the samples and templates in the guide allowing you to easily customize them for your event.
To order the guide or for help getting your event going, email us at firstname.lastname@example.org
WHAT'S HAPPENING ACROSS CANADA
REMINDER: JE RÊVE - VIDEO RELEASE
PHA Canada is pleased to announce the release of the video ‘Je rêve’. This video was made possible by submissions from our colleagues in Quebec. Special thanks to Judith Ross who helped us coordinate the creation of the video which includes music from Martin Deschamps!
The video is now up on our website
BCPHS AND PHA CANADA CO-HOSTED THE WESTERN REGIONAL PULMONARY HYPERTENSION SYMPOSIUM
The BC Pulmonary Hypertension Society (BCPHS) in conjunction with PHA Canada hosted the Western Regional Symposium for Pulmonary Hypertension from February 22nd to 24th in Vancouver, BC. The theme of this year's Symposium was "PHighting Back: Supporting Mind, Body and Soul". Participants shared stories and took part in energizing sessions geared toward engaging their minds and bodies in ways to deal with the effects of PH. The yoga session was very well received and PHA Canada Staff is looking forward to including this element in an expanded format in the program for the 3rd National Conference being held in Ottawa, Ontario in September 2013.
2013 WESTERN REGIONAL SYMPOSIUM: AN OVERVIEW BY LANGFORD SUPPORT GROUP
Written by: Jas, Dianne, Jill, Lenore and Lynda.
The Langford PH support group recently had the pleasure of attending the 2013 Western Regional PH Symposium held in Vancouver BC at the Terminal City Club. The 2.5 day event was presented by BCPHS/PHA Canada and ran from Feb 22-24. Friday night started with a meet and greet reception with great appetizers and beverages. A bingo game was handed out to give everyone a chance to get to know each other in a casual atmosphere. We were able to reunite with old friends and make new connections as well. It gave us time to exchange our stories. One of the most satisfying parts of this event is when a new patient or caregiver comes and says, " I'm glad I found you guys."
The PH Symposium opened with Dr. John Swiston, Medical Director of the UBC PH Program at VGH, giving us an update on “What's New in the World of PH”. He discussed the different drug trials on Riociguat, Imatinib, Macitentan, Caripul, oral Treprostinil and Selexipag. He explained what the drugs were targeted towards, how a drug trial works and how participants in the study are chosen. The studies are “double blind” meaning that neither the patients nor the doctors know who is receiving the drug being studied and who is receiving a placebo (sugar pill). Dr Swiston also talked about the Griphon Study and the Ambition Trial. These studies are all ongoing and some will reach their conclusions in about 2 to 3 years. These studies are encouraging and it is reassuring to know that research is current and ongoing and that the PH community has not been forgotten. There is information online about each of these studies if you are interested and can manoeuvre your way through the scientific language.
We all enjoyed a session on questions and answers, “Everything you want to know about PH”.
Dr. Robert Levy, Dr. John Swiston (our PH doctors) Lisa Kolkman-Nurse Practitioner (Vancouver PH clinic) and Carolyn Pugliese (RN PH Clinic Ottawa Heart Institute) sat on the panel.
The audience participated by asking questions, everything from what should our water intake be to how much sodium should be in our diets. We should be weighing ourselves daily. Participants asked what they could do for dryness of the nose for those who use oxygen. (Vaseline inside nostrils).
Chest pain, trouble breathing, edema and dizziness are all signs we need to head for the ER.
Pulmonary Rehab is very useful and exercise is good for PH patients if you are able. At one time it was thought to be harmful. A lot more information came out of this discussion."Living With PH" website is a great source for information.
Dr Melady Preece (Clinical Psychologist, Vancouver General Hospital) spoke on the topic “ Your Emotional Health: Coping With Chronic Illness”. She introduced the concept of mindfulness: the process of becoming more aware, being alive and living in the moment.
Focusing on the present reboots your mind so you can respond thoughtfully rather than automatically. Many psychologists believe mindfulness increases self-control, reduces stress and chronic pain, lowers blood pressure and helps patients cope with illness. Mindful people are said to be happier, more exuberant, more empathetic and more secure.
Instead of getting stuck in your head and worrying, you get to let yourself go. Focus on savouring the present. Usually, it involves the senses, helping you become more serene and focused on things outside oneself.
You can become mindful at any moment just by paying attention to your current state. You can do it right now. What do you see, hear or smell? It does not matter how it feels, just roll with it, do not judge it.
Mindfulness means living in the moment and awakening to experience, giving attention to the present, observing your thoughts and feelings from a distance without judging them good or bad. Rest in stillness, stop doing and focus on just being.
A PH patient's introduction to yoga, presented by Louie Ettling of The Yoga Space, was well received by all who were brave enough to attend. When I think of yoga, I picture a healthy person standing on one foot and contorting their body into positions that my limbs would laugh at hoping to achieve. Louie Ettling's expertise and warmth made it all seem an attainable goal. She explained that Iyengar Yoga was effective for PH type conditions, chronic pain, fatigue, hypertension, depression, anxiety and shortness of breath. This method works on the principal of meditation in action, drawing attention inward to quiet and integrate mind and body.
Iyengar is a therapeutic yoga taught by specifically trained instructors who assess your individual needs and progress slowly to help achieve better mobility, stability, strength and alignment.
It was not difficult to obtain volunteers to the inviting pillows and stability props arranged on the floor or in chairs. Louie and her assistants demonstrated the progression through some postures.
Iyengar Yoga practice helps to improve breathing and exercise capacity. Patients also reported improved well-being, posture, mood, flexibility, concentration and confidence. Sign me up.
The Keynote speaker at dinner was Carl Hicks, Vice President, Field Operations Pulmonary Hypertension Association-USA. Carl spoke to “Hope is not a Method: The Power of One”. He was a passionate speaker and his presentation included many photos. It followed his progression from not participating in his daughter's fight against PH, to becoming an active part and motivational speaker, encouraging all to “PHight against PH and not take it lying down”. Carl's presentation included many quotes such as:
“ I kept hoping somebody would do something about that and then I realized that I was somebody.” (Lily Tomlin).
“ You can't help everyone, but everyone can help someone”. (Ronald Regan)
No words were truer to describe BCPHS' own Liz McCall. Liz saw the need for PH patients to advocate for themselves and support each other. She founded BCPHS and was instrumental in the start of PHA Canada. Despite her own medical challenges, Liz never tired of spreading the word about PH and offering support to those with the disease and their families. One person truly can make a difference and we honour Liz by carrying on with her selfless dedication.
In this light, the name of the Hometown Hero Award was changed to the Elizabeth McCall Hometown Hero Award and presented this year to Margaret Lehmann, Liz’s best friend, for her tireless effort on behalf of those with PH.
The BCPHS Annual General Meeting was also held on Saturday with a great turnout of members. Roberta Massender was elected President of BCPHS at the AGM and presented with a President's necklace (ED NOTE: this necklace belonged to Liz: it was given to her on the 10th Anniversary of BCPHS: her family has returned it to BCPHS and from now on it will be worn by the BCPHS president).
We wrapped up our stay at Terminal city, headed home with great door prizes and memories of the wonderful accommodations and food. But mostly, we carried with us hope, new information, friendships and inspiration to continue the PHight.
TELE-WORKSHOPS FOR CAREGIVERS THROUGH THE CARING VOICE NETWORK
This month the Caring Voice Network is hosting free tele-workshops for caregivers. For more information about the Caring (Care-ring) Voice Network and their tele-seminars, please visit their site
. Below is a list of some seminars that caregivers may find useful:
March 14, 2013 7:00 PM (PST)
What Does True Helping Really Mean?
Host Organization: Family Caregivers' Network Society
March 26, 2013 6:30 PM (PST)
Making Caregiving Decisions: Which Hat Am I Wearing Today?
Host Organization: Family Caregivers' Network Society
INSIDE PHA CANADA: NEW GOVERNANCE COMMITTEE
On February 24, 2012, PHA Canada’s Board of Directors voted on and established a Governance Committee. Over the next few months, the Committee will be charged with developing terms of reference, and beginning its work.
The purpose of the Governance Committee is to ensure the strategic governance of PHA Canada. This new Committee is responsible for ongoing review and recommendations to the quality and future viability of the Board. It leads the Board in reviewing and updating Board Roles and Responsiblities, as well as expectations of individual trustees as well as assisting the Board in updating and clarifying primary areas of focus based on the strategic plan. It is also charged with ensuring effective continutiy over time of PHA Canada through assessing and predicting current and anticipated needs for Board composition (ensuring that the correct skills, attributes, knowledge etc are all present on the Board), and developing and overseeing a Board recruitment process. The Committee is also charged with Board Knowledge (implementing a Board mentorship program that will allow new incoming Board members to learn their role and have a mentor of whom to ask questions), Board Effectiveness (conducing Board performance reviews, provide counsel to increase effectiveness, and regularly review the Board's practices) as well as Board Leadership (succession planning, helping with nomination of Officers etc).
This new committee will play an important role in the overall stewardship of the organization and the development of PHA Canada’s Board members.
PHA Canada is pleased to announce the Governance Committee members:
Harry Rozakis, Chair
The creation of the Governance Committee is a sign of how PHA Canada is working to create more transparency and accountability and is committed to ensuring solid foundations that will allow it to continue as an entity through transitions. In 2013, PHA Canada will develop new by-laws and seek out new ways to strengthen its Board and focus on strategic outcomes for the organization.
For more information about the committee or any other workings of PHA Canada, please contact us at email@example.com
If you have a question about some aspect of how PHA Canada works please send it to us at: firstname.lastname@example.org
Low-sodium recipe of the month: Halibut with Tomato Basil Salsa
Here's a low sodium recipe just in time for Nutrition Month. Enjoy your halibut!
Dietitian's tip: Halibut — in addition to cod, flounder and perch — is a lean fish, having less than 2.5 percent fat by weight. For a variation to this recipe, grill the halibut and spoon the tomato basil salsa over each fillet to serve.
2 tomatoes, diced
2 tablespoons fresh basil, chopped
1 teaspoon fresh oregano, chopped
1 tablespoon minced garlic
2 teaspoons extra-virgin olive oil
4 halibut fillets, each 4 ounces~
Preheat the oven to 350 F. Lightly coat a 9-by-13-inch baking pan with cooking spray.
In a small bowl, combine the tomato, basil, oregano and garlic. Add the olive oil and mix well.
Arrange the halibut fillets in the baking pan. Spoon the tomato mixture over the fish. Place in the oven and bake until the fish is opaque throughout when tested with the tip of a knife, about 10 to 15 minutes.
Transfer to individual plates and serve immediately.
Nutritional analysis per serving
Serving size: 1 filet
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Source: PR Newswire UK 5th WORLD SYMPOSIUM ON PULMONARY HYPERTENSION, NICE, France, February 28, 2013 /PRNewswire/ -- New data presented at the 5th World Symposium on Pulmonary Hypertension reveals hidden but significant impact of PAH on patient's well-being Results from an international survey providing new insights into Pulmonary Arterial Hypertension (PAH) have revealed the impact of the disease, beyond the physical burden, is under-estimated. Significant findings from the Interna..... [more
Source: Health News Network February 26, 2013 This March, Dietitians of Canada is asking Canadians to put their 'Best Food Forward' and 'Plan Shop Cook Enjoy!' - in celebration of Nutrition Month 2013. Nutrition Month is dedicated to serving up practical advice from registered dietitians, the food and nutrition experts, to makeover your grocery cart. "Healthy eating begins at the grocery store. It's where most people purchase their food," says Francy Pillo-Blocka with Dietitians of Cana..... [more
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Vol. 3 No. 3 MAR 2013
Connect with PHA Canada
VIEW PAST ISSUES: www.phacanada.ca/ThePulse
PHA CANADA NEWS & UPDATES:
3rd National PH Conference
Share your story
PH Resources: your help needed
Community Events Calendar
SHARE YOUR STORY
Delta City Centre, Ottawa
Keeping the PHlame of Hope Alive
Our 2-day National Conference is coming soon. Registration will be delayed due to technical updates and will now open on March 18th. Visit our site next week
. For more information about the conference and available scholarships, contact us at email@example.com
We are looking for articles to include in our Spring issue of Connections as well as in The Pulse monthly e-newsletter. Do you have a story, a recipe, tips on living with PH or something else you would like to share? Send it to us at firstname.lastname@example.org
YOUR HELP NEEDED
We are compiling a list of resources available to patients across the country, if you’ve taken advantage of any resources available in your province, or city (through government programs, other foundations etc.) please share the information with us so we can help others in your region. Email your resource info to: livingPH@phacanada.ca
UPCOMING COMMUNITY EVENTS
(click the event to go to information for each event)
Louise Riley Library
6:45 PM - 8:30 PM
The Pulmonary Hypertension Support Group of the Southern Alberta Chapter meets the first Tuesday of each month at the Louise Riley library located at .....
Condo Party Room
1:30 PM - 4:00 PM
The PH support group provides a place where patients, family members and caregivers can share their experiences, learn about PH, treatments and how .....