Archive for the 'Stroke' Category

My friend Shirley, 1948-2015

Posted by on Jun 20 2015 | Aphasia, Life at home, Stroke

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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.

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Funeral yesterday for former client

Posted by on Mar 06 2015 | Aphasia, Events, Speech-Language, Stroke

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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.┬áThe 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.

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Jose Suganob

Posted by on Oct 28 2008 | Aphasia, Stroke

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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.

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Roberta Elman wins award

Posted by on May 15 2008 | Aphasia, Stroke, Women in Leadership

Roberta Elman

http://cbs5.com/video/?id=17560@kpix.dayport.com

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

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