1. Camp Latona

2. Little Flower Academy – high school

3. Solo trip to Europe

4. Purdue University — SLP study, work as a staff resident, trips to Chicago, Toronto, and New Orleans

5. Marshfield Clinic — clinical fellowship in Speech-Language Pathology

6. SLP work at GF Strong Rehab Centre — community outreach service, outpatient program, special, memorable clients

7. Volunteer at Vancouver Writers Festival — picking up writers at the airport, including Rohinton Mistry (his first trip to Vancouver and I showed him around Granville Island on the way to his hotel) and hosting a couple of memorable events, including ones with Alberta Manguel, Michael Moore, Sherman Alexie and many others

8. Went to a Harvard Continuing Education week in Boston on “The Neurology of Behavior” hosted by Antonio Damasio . Also managed to squeeze in a Vancouver Canucks vs Boston Bruins game at the old Boston Garden. Pavel Bure scored the overtime winning goal 4-3. On that same trip, I took the train up to Stamford, Connecticut to see very good old friends (Martha and Phil) and had a personalized tour of the highlights of New York City that included an elevator ride to the top of one of the World Trade Center towers.

9. Travel to visit good friend in Vermont and drive through several states and see the fall colours in Quebec, New Hampshire and Maine as well as Vermont

10. Finding my biological family in 1997 and a new cousin in 2014.

11. Daniel and the summer of 1998

12. Buying my dream house in 1999

13. Many trips to Merville, Vancouver Island and Saturna Island, thanks to generous friends

14. Road trip to Yosemite National Park via Washington, Oregon and California coasts in 2000

15. Trip to Helsinki, St. Petersburg (Russia) and the Baltics (Lithuania, Latvia, Estonia) in 2001

16. Trips to Haida Gwaii — first one solo in 1996 and second one with Daniel in 2002

17. Winning media award from national SLP organization and going to St. John’s Newfoundland to receive the award in 2003.

18. Founding of the BC Aphasia Centre (2000) with lengthy article by Daphne Bramham in the Vancouver Sun (2003), Volunteer Vancouver Award nomination and CBC National Radio interview with Shelagh Rogers, June 24, 2004 ( see media page )

19. Provincial jobs — great opportunity to learn new skills and learn more about the diversity of British Columbia with two contract positions: Coordinator for “Strengthening Families and Youth” with Canadian Mental Health Association, BC Division, and Provincial Consultant for Pediatric Therapists, contract through the Ministry for Children and Youth. The website I started is still there!

20. My dad’s death — I wrote a special letter to my dad on his 75th birthday to make sure that he knew how important he was to me in my life. When he declined suddenly with aggressive cancer two years later, I was glad that I had done that as we had little time for quality conversation. A talented friend help me make a beautiful funeral card for him.

21. Politics – I enjoyed getting involved in federal politics and went to my first national convention in late 2006. Being involved with the election of our local MP last year was also a life highlight.

22. I got involved with the Women’s Campaign School with the Canadian Women Voters Congress . I was president from 2008 to 2011. I met a lot of interesting people and learned a lot in that time.

23. Florida and astronauts. We were invited to the launch of STS-125 by a Purdue colleague, Drew Feustel, in 2009. It was a great and memorable experience. The year before I had a chance to meet Marc Garneau , Canadian astronaut through politics, (I found myself in a foyer alone with him and told him about Drew Feustel whom he referred to as “the half-Canadian”); John Herrington , the first American Indigenous astronaut, through a friend who was working on a children’s show through APTN. And then we got to meet Drew’s crewmate and space walk partner; John Grunsfeld , when he was giving a lecture at UBC about repairing Hubble and his experiences as an astronaut. Drew’s wife Indi let him know that we were attending the lecture so it made it easy to approach and chat with him before the talk.

24. Being present for my mother’s death in 2010 and organizing a funeral with her ahead of time and having it work out so beautifully.

25. Being well enough to travel again with Daniel, with a trip to Washington, DC, Long Island (to see my sister) and NYC.

26. Being well enough to enjoy life — good food, riding my bike, seeing friends again after changing my diet and becoming inspired and a follower of Dr. Terry Wahls and having the chance to meet her !

I met Shirley online in November, 2002. She had left a message on the National Aphasia Association website and identified herself as a woman whose husband had aphasia and they were located in Victoria. I responded to her call for help as I was working on the BC Aphasia Centre in my “spare time”.

That was the beginning of many years of working together to try to find support for her husband. In turn, she became a support to many other women across Canada dealing with similar challenges.

For many years, Shirley was a big support for me and my dream/vision of setting up an aphasia centre in BC. She nominated me for an award through Volunteer Vancouver where I became a finalist in the 2006 Community Service (individual) award. The awards dinner was a swanky affair at the Bayshore Hotel. I lost to a football player who volunteered with Big Brothers but it was amazing to have the whole story summarized and shown at the ceremony. And I was very pleased that Shirley and Dallas were at the dinner!

Shirley was like a big sister and mother to me, always there to encourage me and offer support. I kept all of her emails. This is what she wrote to me after filming our interviews for the video above.

Of course on the way home I mentally slapped myself for NOT saying some of the things I thought were important — mainly when it came to thanking you. I should have thanked you for giving 5 years of your own live to making the lives of others better; for never giving up; for always working towards making a real concrete Aphasia Centre a reality and for speaking for those who could no longer speak for themselves. I also should have said that my husband was in the hospital for 6 months and in that time I met one person who truly cared about what would happen to him, and that was you — the one person who was “only” a volunteer’ the one person who was making a difference and not getting paid for it! . . . well, next award because there are more to try for and I will keep entering your name because in my heart you are the most wonderful person I have met in many, many years . . .

With a cheerleader like that, is it any wonder that I loved this woman? She was so kind to everybody and so heroic in her support and love for her husband. She was a petite woman yet so determined and strong.

While I was suffering from the trigeminal neuralgia, we stayed in touch via email and facebook. She continued to support me with her kind thoughts and words. Two weeks after my official diagnosis of MS, I learned that Shirley had had a stroke on November 30, 2012. I was in so much pain at that point and unable to consider seeing her until after the rhizotomy in Winnipeg on December 27.

I did make it over to Victoria to see Shirley once while she was in the hospital in January of 2013. It took a lot of energy to do things like that back then but I really needed to see her and tell her I loved her. While I’ve been getting stronger over the past year, I was making tentative plans in my head to go back and visit again. And then on facebook, one of her sons gave updates on an acute hospitalization for pneumonia. And a few days later, another son wrote about her death, June 12, 2015, at the age of 66.

My husband and I spent a few days last week at Saturna and I thought of Shirley the whole time. She always told me to do what I could when I was young and able so that I’d have no regrets if and when Daniel or I lost our health. She was right. So, as we hiked and watched the orcas, I thought of Shirley smiling and cheering me on.

Thank you for being a part of my life, Shirley. I was honoured to call you my friend.

Over the course of my working life, there were a few clients I’ll never forget. Sometimes it was because they presented challenges to me and taught me a lot. Other times it was because I was really able to work with the client, and often the family, to have an impact. Today, I thought about it and realized that there were seven of them in total. One of them died last week at the age of 89, two months shy of his 90th.

A few days ago, I was contacted by the daughter of this client I worked with almost ten years ago. She called to tell me her father had died and gave me details about the service. This was a special invitation and I was honoured to be asked.

In September, 2005, just after my dad died, I was contacted through my private practice to have an interview with a family who were interested in hiring a speech-language pathologist to work with their father while he was in the hospital, following a large stroke. It appears that a decision was made at the hospital to deny him rehabilitation because of his complex health needs and the type of aphasia he was left with following the stroke.

One piece of information I was able to provide them was to tell them not to allow him to be discharged or he would have no chance for rehabilitation. And the biggest challenge with the type of aphasia he had often meant that people would be admitted to extended care units and placed on dementia wards. The family had every intention of taking him home and were fortunate that they had the financial means to provide for him. (A few months before this meeting, I had quit a job in Vancouver Community health because I advocated for a man who had Wernicke’s aphasia and was locked up on a dementia ward — but that’s another story!)

This man was moved over to UBC hospital for sub-acute rehabilitation where he had one visit from the speech-language pathologist each week. The family hired me to visit him every day to assess and treat him. But the most valuable part of my work with the family was to teach them about aphasia, especially Wernicke’s aphasia, and to pay attention to his behavioural intelligence as it was evident to me at our first meeting.

The members of the family were amazingly strong and assertive, especially the eldest daughter. Over time, she and her mother insisted that people learn about aphasia and they made plans to bring him home once he was medically stable. Although it was challenging for the family in the past couple of months, they enjoyed his company at home for almost 10 years. He had the opportunity to see his grandchildren born and grow up a bit. He also was able to see his siblings and other relatives who lived overseas.

Yesterday at the funeral, I heard more about this man and his life. He had a multitude of near death experiences and with all of his health complications, he should not have lived to 60, let alone 90. But he had a stronger will to live than anybody I have ever met. And after his stroke, he greeted people with a big smile, and said “I love you” freely, even if they were not the exact words he wanted to say. The sentiment and the sincerity were there for all to see.

His two daughters shared the story of his life with the attendees at the funeral, and the amazing stories of his strength and survival. At the end, the eldest daughter wanted to thank four people who had made a difference in their father’s life, especially following the stroke. First was the family doctor of 40 years, then next I heard my name — I have to say I was so gobsmacked and moved to tears, that I didn’t hear who the third one was. The fourth was the nurse the family hired ten years ago and has helped them manage at home for all these years. It was nice to see her at the reception as we were both a big part of the transition from the hospital. She provided love and support to the whole family.

I went to the reception for a few minutes as I wanted to make sure I extended my greetings to the family. And I spent some time by the hearse to have a few words with this remarkable man.

Yesterday, I was a panelist at the 5th Annual Allies in Health Fair at UBC. I had been inquiring about the Health Mentor program and then was invited to participate as a panelist. I was on a panel to discuss “Barriers in health care communication” which was a perfect topic for me. I could have used the whole session but was sharing the platform with three other women. One had Parkinson’s disease, another NMO, and the third was a member of the Patient Voices Network. The woman with NMO, Lelainia Lloyd was pretty impressive and I expect we will be seeing each other again. You can get a sense of her and learn about NMO by reading her blog posts at Someone Like Me .

Most of our audience were in areas like pharmacy, genetic counselling, dietetics, kinesiology — a couple of us were disappointed that there weren’t any students in medicine, nursing, occupational therapy or physiotherapy. Dr. Perry popped in near the end so he missed my presentation, but it was really nice that he came by. I had let him know that the event was on and I encouraged him to send students over.

After my panel, I went to the panel on Aphasia with the Aphasia Mentoring Program . I had met Gord earlier in the refreshment area for panelists. He reminds me a lot of Brantford’s Steve Goff as he has presence and charm and no words.

I also spent time in the main exhibit hall, meeting people from different organizations and talking with a couple of young people who are going to be great care providers when they’re finished their programs, David, a medical student, and Andrea, an OT student.

I have recently started attending a group at GF Strong Rehab Centre called the WOW group — or Women Supporting Women. It feels very strange to go to the place I used to work and receive support but I very grateful that these things exist. Walking down the hallway, outside of the physiotherapy/occupational therapy section is the bulletin board that I had put up in about 2002.

Anyone who knows me knows that I am a woman of action. I may grumble and complain for a while but I think about solutions and then take steps to make them happen. The speech-language pathology group was running really good aphasia conversation groups and we would talk about how well they were going. The group attendees were also benefiting and really enjoyed the groups, yet they weren’t able to tell their families or other therapists about what transpired in the group. I  had purchased the book “Beyond Aphasia” published by the brilliant therapists in England at Connect , and there was a sample of ‘aphasia-friendly’ minutes in the book. So, Michelle K and I started to take minutes for the group and at the end of the session, we would provide a copy to each member to take with them to share with family and friends.

It occurred to me that it would be valuable to post the minutes in a central location so that the GF Strong community would be aware of the group and the word aphasia, have samples of aphasia-friendly writing, and perhaps start to learn about the interests and lives of our people with aphasia. So, I called Frank in maintenance and asked him to build me a bulletin board and post it on a prominent wall. And, he did.

I cannot tell you how happy I am to see the board is still there, being well maintained, and the aphasia-friendly minutes are still being produced and displayed. Thank you speech-language pathology practice group!

I just learned of a new Canadian-made app for people with communication problems, called My Voice .

It looks really promising and I hope to be able to try it out.

The app is free for the next 6 months.

From the news article:

“One of the most devastating aspects of aphasia is its potential to isolate someone because they can no longer communicate as they once did,” said Dr. Alexandra Carling-Rowling, who is leading research into the app’s possible benefits for the Aphasia Institute, Toronto Rehab and Sunnybrook Hospital.

“They can lose their communicative confidence and they lose their ability to participate as they used to. But with MyVoice, they don’t have to constantly rely on a family member, they can go out and do things for themselves.”

MyVoice, created by a team based out of the University of Toronto’s computer science department, is designed to do the job of much more expensive devices designed to assist with communication.

I enjoyed a webinar this afternoon with Christina Merkley, Shift-It-Coach, a “visual-thinking expert” on uses of graphics for different situations. In my work with people with aphasia, I started to learn how to communicate with pictures and drawings. I had never fully understood the power of graphics until I learned that my clients could tell me a lot about their lives, their emotional states, and their activities by using a pencil and paper.

I am going to start using more graphics in meetings and start to work on increasing my comfort with drawing. When I’m ready, I’m going to take one of her courses. For people with aphasia, the graphics person will need to be skilled in understanding. This is where a skilled communication partner comes into play. When you watch her videos and her great work, she is acting as a translator – speech to graphics/words. In aphasia groups that I have facilitated, we did a combination of techniques, words, gestures, and drawings. Even though people laughed at my stick figures, I gradually got better at communicating concepts in graphics.

I’m looking forward to doing more of it.

I had a chance to reconnect with Jose Suganob at the Stroke Recovery Association of BC’s Open House on Friday, October 24. Stroke Recovery has moved into new offices in the same building as the Heart and Stroke Foundation of BC/Yukon.

Jose is a stroke survivor and has aphasia. He is also an award-winning artist — a talent he discovered and nurtured after his stroke. He just sent me an e-mail with some photos he took. I’ll write more about the Open House later.

Jose works in a studio in Burnaby called Artists Helping Artists .

http://cbs5.com/video/[email protected]

Roberta Elman from the Aphasia Center of California was an inspiration for me when I founded the BC Aphasia Centre.