Hope, Recovery and a New Life WINTER 2015 INSIDE THIS ISSUE HOPE, RECOVERY LIFE

AND A

NEW

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PEER TO PEER

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CONGRATULATIONS DALE!

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U OF O INTERPROFESSIONAL UNIVERSITY CLINIC

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WRESTLING WITH ANGELS

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HEART & STROKE - ACT FAST!

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NEUROGYM FIT PROGRAM STROKE SURVIVORS

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FOR

2014 Benefit Dinner & Auction

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THE QUESTION BOX

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Still Throwing A Few Elbows

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OTTAWA YOUTH STROKE SURVIVORS GROUP JANUARY 2015 SSAO CALENDAR FEBRUARY 2015 SSAO CALENDAR MARCH 2015 SSAO CALENDAR GUIDEBOOK ON STROKE IN YOUNG ADULTS PROGRAMS

AND

SERVICES

Stroke Line 613 237-0650 www.strokesurvivors.ca Charitable # 84767 9073 RR0001

SURVIVE · STRIVE ·

The moment came when I realized that I had to make a decision whether to live or to die. It was at that poignant crossroad that I was flooded with feelings of Love for my wife Tish, all of my friends, and the experience of freedom in painting, singing, drumming and of Life itself and all its beauty and expressions of Hope, Peace and God’s Glory. Suddenly there was Light, where a moment before there was only darkness. It is difficult to put into words as it was all happening from such an inner state of conscious awareness beyond the body, and yet including the body. I chose to live! I was fortunate as there was much prayer from my wife, her parents, their pastor and my friends. Tish came to see me twice a day and her parents almost every day.

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I often repeated and felt a statement from Mary Baker Eddy “Keep your mind so full of Life Truth and Love that sin, disease or death cannot enter.” Also a statement from Kenneth G. Mills my mentor, “Prayer is activity dedicated to realization” So I knew my recovery would have to be an active one, mentally, physically and spiritually.

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I passed the tests by being obedient to the wonderful professional and compassionate nurses and staff there and tried not to complain too much.

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Having a sense of humor even in the most dire circumstance can lighten the load for all involved.

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In ICU when I went for my first walk of 20 steps down the hall and 20 steps back (With the help of a walker) A nurse followed behind me pulling up my pants every few steps as I had lost 20lbs being on intervenes. I later wrote a short little poem describing the event.

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WE ARE A COMMUNITY ASSOCIATION THAT SUPPORTS THOSE WHO ARE AFFECTED BY STROKE THROUGH COMMUNITY REENGAGEMENT, EDUCATION & ADVOCACY 323 COVENTRY ROAD, UNIT 72 OTTAWA, ONTARIO K1K 3X6

After suffering a devastating stroke I was admitted to the ICU at the Queensway Carlton Hospital where I was to spend the next 6 weeks and then another 3 and a half in Re-Hab. The original prognosis was that I may never speak, eat, drink or possibly walk again without a tracheotomy, a feeding tube or a wheelchair.

Funny Bone Funny you should say that How could you have known That a joke or a humorous quip Would tickle my funny bone. Now which bone is funny? And which is not? My pants falling down Before they are caught?

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went to the gym every day. I could stand on one leg for 3 or 4 seconds at first and then 2 days later for 10 seconds. I thought this was pretty miraculous and so I looked up what they call neuroplasticity and saw that the brain has billions of connectors or dendrites that connect the brain to the body and each time a pattern is repeated that connection becomes stronger.

Declarations - Count the blessings every day upon waking. Listen for God whispers. Not my will, but Thy Will be done. Persistent prayer. I am grateful for the awareness to question anything that would limit my life or the lives of those whom I know. I am so grateful for my wife who is doing so much in making my recovery a reality. I am grateful for the air that I breathe, the food that I am able to swal- I further experienced this in speech therapy as they low, and for the ability to speak, sing and ride my said that my one vocal chord was paralyzed. I asked bike. what she mean by paralyzed and she said that the vocal cord is still intact, it's just that the brain isn't The Tracheotomy - Having a tracheotomy was not making a connection to it. I got so excited that the an option. It was a necessity in order to breathe. I possibilities were still open to recover my voice. I felt at the doctor’s mercy and, fortunately, capable went home that evening and was able to sing tones hands when this invention was attached to my traI hadn't heard since the stroke. chea. When I arrived home on June 5th 2013 I was still I later on asked one of the nurses if she had any gaining strength and had to go slow. Everything had information on the “trachea.” She came back with to be done consciously. Swallowing, walking, taking many pages including a picture of the inventor of a shower etc. this item as he sat in a wheelchair, seemingly covered in metal on his throat, arms and legs. The im- It was in Sept. that I met with Dr Christine Yang age was way over the top for me even though the who said that I had scored 28 out of 30 on my motrachea that I had was plastic and not so threaten- tor skill test and that I could drive a car. In my naivety I thought, well, if I can drive a car, I should be ing looking. able to ride a bike. My response to the image and information that I had requested was to turn the pages over and start I was able to balance enough to ride 1k around the to write poetry and pleasant sunny ideas instead. It block a few times. The next ride was 5k then 10k was great! I had all these new pages to fill. When and the longest ride so far has been 65k. Tish and I you are in that vulnerable non-speaking state, those ride indoors now on our trainers, Paint in our studio around you who do not know you can only assume and give gratitude for the miraculous continuing rewho you are. covery. Fortunately the nurses were sensitive and compassionate. We are so defined and so known by our words. Without words or the tone that goes with them we are only know by our eyes or possibly hand gestures if we are still fortunate enough to have those motor skills. If you can’t speak...write! I had so many tubes attached to me that my right arm was heavy, and my wife had to put a pen in my hand. The writing went from very tiny to very large on the clipboard they gave me. It was difficult and frustrating to communicate when very basic writing was all I could do.

I donated two of my paintings to the nurses, staff and patients on the ICU and Rehab floors of the Queensway Carlton Hospital as I knew as a patient what it meant for me to see color. I was given the opportunity to speak to the nurses during “Nurses week” week in gratitude for the care I received there. Also did an interview on a show called “One on One” on Rogers cable 22 and told my story to a writer who did an article which they sent out as a fund raiser for new equipment for the ICU at the QCH. So far the 700 generous donors have given $50,000.

It was five weeks later when I could breathe on my If you are interested own and the trachea was removed. my book “Hope, Recovery and a New Now, six months later, there is only a trace scar Life” can be found that barely implies it ever happened. It saved my on line. life and was my friend until we happily parted. All the best, A joyful day and one of many tests to come. Terry Stevens I was moved to the Re-rehabilitation floor where I

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PEER TO PEER As bells ring and chants sing.... it’s the most wonderful time of the year...We look back To the Grinch who stole our livelihood (the painful reality of having a stroke- a devastating event) to Hark the dedicated Wonderful ANGELS (whom of which I refer to as our blessed volunteers who have been a constant chant in our lives and truly give us wings and tools to help us continue on our lifelong journeys throughout the whole year. We truly thank our dedicated volunteers who have brought the courage to give the gift of time and instill the message of HOPE. A Universal message for sure! We know that illness such as stroke does not carry religion, colour nor language so as these ANGELS CARRY THIS universal message of HOPE and possibilities... THERE

ARE NO BOUNDARIES TO HUMAN good and kindness IN AL MANKIND!! . Goodwill in these festive times is always strongly felt during the holidays and continues to be the constant tool used by stroke volunteers in our community. Putting all differences aside we welcome and appreciate the dedication and warmth brought by everyone who participate and welcome all those who wish to give back and experience this true feeling (of good hope and deep appreciation).Let this true great feeling of boundless love, joy and happiness be part of your New Year’s resolution! Join us to take part in these great sensations! Hark to our blessed Angels...and peace to all! Happy Holidays! - Nicole

CONGRATULATIONS DALE! Dale Johanssen is one of the founding members of the Stroke Survivors' Association. In fact, she has been on the Board of Directors since our inception in 2005. Dale has consistently proven her value to the Association by giving freely of her time to advance the mission of the SSA. She was our first Peer-to-Peer coordinator and has three times chaired the Annual Benefit Dinner and Auction (a time gobbling and often thankless undertaking). Dale has served as Chairperson of the Board of directors from 2010-2011 and is a regular at our monthly support group and has graciously and willingly encouraged anyone who has asked her for assistance. On behalf of all the members of the SSA it is our pleasure to present this “Outstanding Community Volunteer Award” to Dale Johanssen and to say thank you from every single one of us.

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WRESTLING

WITH

ANGELS

I've learned to manage my disabilities pretty well; but sometimes they sneak up on me and I get so frustrated with myself. Then I tend to blame myself for being too tired, or too forgetful, or for not being careful enough and bumping into something. In those moments I become my own worst enemy. Its then that my disabilities turn into a real handicap.

In time, the loving kindness meditation can be broadened to include others. For example, we might be especially mindful of others at SSA. Or we might think about recent stroke patient's at the hospital who are being visited. I know I especially want to be thinking about the nurses and doctors doing shift work who are real heroes to so many of us.

Then the words of the loving kindness meditation change from "I" to “we”. Then they might become It's been helpful learn about mindfulness medita- something like: tion - to relax and become more gentle in my attiMay I & may all the members of SSA be safe, tude. Learning how to meditate has been a long or slow process for me, yet I think it’s been worth the May I & may all the recent stroke patients be effort and has helped me in a personal journey tohealthy, ward self-understanding, acceptance, healing and or renewal. It has also helped me to relate better to May I & may all hospital staff be happy, others. or I recently l have begun to learn an additional pracMay I & may each person I meet be at ease tice called “loving kindness meditation". Christo- this holiday and throughout the new year. pher K. Germer describes loving kindness meditaJim Lee tion in his book The Mindful Path to Self Compassion.. Its focus is upon self-love as the basis for learning to love others. Christopher K Germer points out that you can't love others if you don't first learn to love yourself. The biggest handicap for me in my recovery after stroke hasn’t been the loss of memory, confusion or fatigue. My biggest hurdle has been learning to love myself-even my disabled self. Maybe this has been my biggest challenge all along - even prior to having a stroke. Loving kindness meditation involves saying a few short words to yourself for a brief period of time each day. The words are simply this: May May May May

I I I I

be be be be

safe. healthy. happy. at ease.

Deb, Jim and grandson Elliotpicking apples

GUIDEBOOK ON STROKE IN YOUNG ADULTS

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Stroke is a Medical Emergency - Know the Signs of Stroke & Act FAST! If you or someone with you experiences any of these signs, call 9-1-1 or your local emergency number immediately. Acting quickly can improve your survival and recovery. Do not drive yourself or the person having a stroke to the hospital – an ambulance will get you to the best hospital for stroke care. What to expect at the hospital The paramedics will take you to the closest hospital with a specialized program for stroke care. They can call ahead so hospital staff are prepared for your arrival. You should receive medical attention soon after you arrive. If you don’t, let the emergency department staff know. Provide detailed medical history and information about past medical conditions if possible. Knowing the exact time that the stroke signs began is helpful. A brain scan should be done soon after you arrive, to find out the kind of stroke you experienced. If the stroke was caused by a blood clot, you may benefit from a drug called tPA. It can re-open blocked arteries which reduces the severity of the stroke, helping you recover more fully. tPA must be given as soon as possible and within four and a half hours from the start of symptoms.

NeuroGym FIT Community Exercise Program for Stroke Survivors NeuroGym has been a leader in improving function for stroke survivors in Ottawa for over 15 years. Our approach to rehabilitation and innovative equipment is designed to allow people with limited mobility to attempt, and experience success, in the functional tasks that they find most difficult. NeuroGym FIT (Functional Independence Training) is a program that emphasises functional activities like standing, balancing and stepping. Previously, this training has only been available as one-on-one physiotherapy at NeuroGym’s clinic locations. In the coming months, NeuroGym is hoping to create a poststroke exercise program in partnership with a community gym. The program would use NeuroGym equipment and methods to target the functional activities that many stroke survivors find challenging. The program would consist of three weekly sessions on an ongoing basis, and be offered at a price consistent with a monthly gym membership. Call NeuroGym (613.523.9905) or Stroke Line (613.237.0650) for more information.

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2014 Stroke Survivors Benefit Dinner & Auction The 2014 Benefit Dinner/Auction on Nov.5th was the best time yet! The party atmosphere was set by the award winning Blue Grass Band Jan Purcell & Pine Road generously donating their talents to supporting our cause. As people bid on their favourite silent auction items they also had a chance to win Senators tickets and the coveted Treasure Chest. Again, K&S on the Keys took home the Treasure Chest! After dinner we wrapped up with the Live Auction.

vors in the community through education, advocacy and peer support. The Auction directly supports the Peer to Peer Visitation Program. Volunteer Stroke Survivors visit Stroke Survivors, Care partners & family members in hospital to deliver a message of hope and that they are not alone. Equally important is our call backs where we talk to them to navigate them to the services they need plus give them moral support.

For those of that were at the Auction be sure to Thank-you to all that participated. The night was thank our sponsors when you meet them. It will lively. There was something for everyone… Thanks help greatly for the future when they feel appreciatto our faithful supporter’s. ed. If you had fun or suggestions let us know, if you Putting the Auction together is a lot of time and ef- can volunteer some time, you are an angel. The fort. The support that we were shown by the com- new committee needs to expand to promote the munity, was heart-warming. They realize it is for a event to the public, as part of stroke awareness and good cause. We promote better life for stroke survi- to expand our corporate sponsorships for this event. - Dale

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THE QUESTION BOX DO YOU HAVE AN AGING PARENT WHO EXPENSESS & HEALTH CARE COSTS? Whether it be doctor bills, pharmaceutical costs, or installing a stair lift, elderly people have many needs and additional expenses beyond what their income allows, but they have equity in their home. As an alternative to informally loaning your parents money, setting up a personal mortgage to them may be the answer. Susan lived closer to her parents than her four siblings. When her mother began having health issues they decided to hire a caregiver. She needed someone to help with her exercises, meals and bathing. Initially, it was a few days a week, but eventually, 24-hour assistance was required. Her parents could not afford it and they were not eligible for traditional loans. Susan began loaning them money. When she consulted an elder law attorney, he told her it was not a good idea. “I’ve seen it happen too many times,” he said. “One sibling pays out of pocket. The parents die, but then the child is not reimbursed when the estate is settled because it was not a formal loan.” Susan’s attorney suggested a personal mortgage (also called an intra-family mortgage) with a formal interest rate. The interest rate must be at least what the IRS has established as the annual federal rate. It can be open ended, allowing you to give them $50,000

STILL THROWING

A

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FACING INCREASING MEDICAL

one month and $10,000 the next. The mortgage actually becomes a formal note or lien registered with the state. When the house is sold, the note/ loan is settled. For Susan and her parents, a personal mortgage was the best solution. It relieved her father from the stress of trying to figure out how to come up with the money. It gave him back his independence. “And it’s not charity,” says Susan. “My father is happy knowing that one day I will be paid back, with interest.” A personal mortgage also decreases the likelihood of strife when it comes time to settle the family estate. It’s a formal business arrangement. Your parents remain in control and they decide how the money you loaned them will be spent. There is no question about whether or not the money was lent. It’s all documented. Points to remember:  Consult an elder law attorney to draft a personal mortgage.  Officially record the mortgage with a state agency, placing a lien on the property.  Keep accurate records. Document all money disbursed. - Anastasia A. Saterson

FEW ELBOWS

Just a few weeks ago, Gordie Howe was bedridden, barely able to speak and on the edge of death. His family and close friends were preparing to say goodbye. But today the 86 year-old hockey legend is once again helping with household chores. Howe suffered a stroke on Oct. 26, after which his health declined rapidly. He received medical care at his daughter’s home in Lubbock, Texas and members of the family visited frequently as his condition appeared to worsen. But the Howes now credit a stem-cell treatment clinic with turning the hockey legend’s health around. Executives from Stemedica Cell Technolo-

SURVIVE · STRIVE · THRIVE

gies, based in San Diego, reached out to the Howe family in late November, offering a chance to be part of a clinical trial at a partner facility in Mexico. Howe underwent the procedure nearly two weeks ago. His family says that he received an injection of neural stem cells into his spinal canal and by intravenous infusion over a period of two days. Through the course of that treatment, Howe was able to walk on his own and chat with family and staff. Within five days, the family says, Howe was walking on his own and offering a hand with chores around the house and most likely throwing a few mock-elbows for good measure. Winter 2015 Page 8

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JANUARY 2015 SSAO CALENDAR Sun

Mon 4

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7 Peer to Peer Visits Civic Hospital 10-12

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13 Peer to Peer Training 10:00—12:00 Dymon Storage

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1/8 Monthly Support Meeting Survey 11:30 – 1:30 PM Our Lady of Fatima Church

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29 Board of Director Meeting

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14 Peer to Peer Visits Civic Hospital 10-12

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FEBRUARY 2015 SSAO CALENDAR Sun 1

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Supper Social LTD 6:00—9:00 PM Peer to Peer Visits Civic Hospital 10-12 8

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11 Peer to Peer Visits Civic Hospital 10-12

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17 Peer to Peer Training 10:00—12:00 Dymon Storage

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Monthly Support Meeting Guest Speaker Arm Therapy 11:30 – 1:30 PM Our Lady of Fatima Church

Peer to Peer Visits Civic Hospital 10-12 25 Peer to Peer Visits Civic Hospital 10-12

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MARCH 2015 SSAO CALENDAR Sun 1

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12 Monthly Support Meeting Author 11:30 – 1:30 PM Our Lady of Fatima Church 19

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Supper Social LTD 6:00—9:00 PM Peer to Peer Visits Civic Hospital 10-12 8

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10 Peer to Peer Training 10:00—12:00 Dymon Storage

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Peer to Peer Visits Civic Hospital 10-12

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25 Peer to Peer Visits Civic Hospital 10-12

GUIDEBOOK

ON

STROKE

IN

YOUNG ADULTS

Provides Tools, Tips to Promote Recovery

decade, the number of strokes among younger people has risen, according to a 2014 report by the Heart and Stroke Foundation. International studies predict stroke rates among younger adults will double in the next 15 years.

The first-ever resource book for young adult stroke survivors and their families has been released by the HSF Canadian Partnership for Stroke Recovery, University of Toronto Stroke Program and Heart and “Young adults will be living with the after-effects of Stroke Foundation. stroke for a very long period of time and urgently The highly anticipated 60-page Stroke in Young need help to make the best possible recovery,” says Adults guide shares the expertise of dozens of clini- Dr. Dale Corbett, Scientific Director and CEO of the cians, survivors and caregivers to answer more than Heart and Stroke Foundation Canadian Partnership 25 common questions and concerns facing young for Stroke Recovery. adults and their families after stroke. Although factors such as heart problems, neck injuTopics include dealing with pain, changing relation- ries, high blood pressure, diabetes, obesity, smokships, return-to-work, return-to-school, regaining a ing, sedentary lifestyle, stress, recreational drug drivers’ licence, prevention of another stroke, com- use, and genetics play a role, about one third of the munication disorders and more. time the cause of stroke among 18- to 45-year-olds “Although usually associated with the elderly, stroke is unknown. can happen at any age,” says neurologist Dr. Rick Stroke in the Young can be downloaded from the Swartz of the University of Toronto Stroke Program HSF Canadian Partnership for Stroke Recovery weband Sunnybrook Health Sciences Centre. “About site: www.canadianstroke.ca. Hard copies can also four of every 100 strokes happen in people ages 18 be ordered by emailing [email protected] to 45.” For information, contact Cathy Campbell, HSF CanaStroke affects about one of every 10,000 young dian Partnership for Stroke Recovery. 613-852adults in Canada every year. 2303; [email protected] While death rates have declined dramatically in a

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PROGRAMS

AND

SERVICES

VOLUNTEER HELP WANTED! Stroke Survivors Association of Ottawa is the only local stroke support organization. We are still looking for volunteers for the Benefit Dinner & Auction Committee, our programs and services including monthly support meetings, drop-ins, public education, advocacy & fund-raising. SSAO welcomes help in all these areas - from survivors, caregivers and friends. Please call us at 613-237-0650.

PEER TO PEER VISISTATION TRAINING Peer To Peer Volunteer training for survivors and care partners. Next 4Sessions will be: Jan 13th, Feb 17th, Mar 10th, Apr 7th 10:00—12:00 PM (Dymon Storage) Call to enrol today! 613-237-0650

NEXT MONTHLY SURVIVOR/CAREPARTNER SUPPORT MEETINGS Where:

OUR LADY OF FATIMA CHURCH 153 Woodroffe Avenue (Richmond Rd & Woodroffe)

Dates:

Jan 8th —Discussion Feb 12th —Arm Therapy/Guest March 12th— Author/Stroke Survivor Apr 9th —Travel to Alaska/Guest Time: 11:30 AM TO 1:30 PM All Stroke Survivors, Partners, Caregivers & Guests all welcome! Light lunch served. Non-members $5.00 to cover lunch expenses POST STROKE PROGRAMS:

POST STROKE AQUA FITNESS

Dovercourt Community/Tel: (613)-978-8950 (Subsidies available – on approved application)

SUPPER SOCIAL FINDING NEW LOCATION FEBRUARY

Dates: Feb 4th, Mar 4th, Apr 1, May 6h Time: 6-9 p.m. Callll Lise @ 819-682-2776

‘LIVING WITH STROKE’ CAREGIVER & SURVIVOR EDUCATION

SIGN UP NOW! Learn Coping Strategies Understand Treatment Options Manage Stress Share Experiences and Support Take Control of Your Condition LIVING WITH STROKE is a popular free 6-week course to help stroke survivors and family members manage the challenges of living with stroke. Six weekly-two-hour sessions (10 a.m. to noon) will be offered: Led by trained volunteer stroke survivors, The meetings are highly interactive and focus on building skills and sharing experiences and support.

There is no charge! To inquire/register call the Stroke Line 613-237-0650. Thank you to our Living with Stroke Coordinators and the Instructors who volunteer

REHAB WALKING Dovercourt Community/(613)-978-8950 (Subsidies available – on approved application)

POST STROKE AQUA FITNESS Soloway Jewish Community/(613)-798-9818 x300 AQUA THERAPY, CITY OF OTTAWA

Jack Purcell Community Centre

SSA provides a forum for those affected by stroke to tell their story in their words without any changes/editing by Stroke Recovery News. The opinions expressed in the story are not necessarily reflective of the opinions of SSA. If you have a story to share please contact Stroke Recovery News at 613.237.0650.

Unfortunately, SSA does not have the resources, staff or training to provide assistance for personal care during our functions. We ask for your cooperation in planning for your personal care needs when you attend member’s events. If you need assistance in finding attendant care, please contact SSA at 613.237.0685

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