I was invited to speak in Portland at OHSU on August 3, 2015 about my experience in the health care system and the difficulties I encountered along the way. This was an enrichment week for 2nd year medical students at OHSU and attendance was voluntary.

The tech people at OHSU provided me with a link to my talk — it’s about an hour. Perhaps there will be an opportunity for me to do this in Vancouver. I’m not sure how long it will be available online. I hope there is a way to get a digital copy of the talk.

At the very end I talk about the lack of a swallowing assessment by swallowing experts in Vancouver but I do not name the hospital. I also go into a fair bit of detail about the errors that Dr. E. made in the initial consult report that coloured my whole stay in that hospital, although a senior internal medicine doctor had the opportunity to be a bit more inquisitive and wasn’t. I think Dr. E. demonstrated “anchoring bias”, “premature closure” and “confirmation bias”. In other words, he didn’t think when he evaluated me. (For more discussion on diagnostic errors, there is a great post here .) And it was likely compounded by the the neglect of the neurologist who failed to take my complaints seriously in the fall of 2011.

Marc Gosselin (radiologist) introduces me at about 3:00. I start at about 5:00 and go to 1:07:00.

The link below takes you to where you can see two screens — one of my powerpoint slides and the other of me in the classroom while I speak.

https://echo360ess.ohsu.edu:8443/ess/echo/presentation/accc0447-e32f-473c-bd66-d9149ac4f027?ec=true

This next link just shows you the powerpoint slides and you hear my voice only.

One of the concepts Dr. Gosselin wanted them to really understand was “diagnosis momentum” in my long journey to diagnosis. And he could not believe that we have a practising neurologist in Vancouver at VGH who cannot diagnose MS with an MRI!

I received great feedback from the students. One came up afterwards and told her own story of not being listened to before being diagnosed with a serious medical condition. And another female student wrote to me:

I am one of the second year medical students that came to your lecture today at OHSU. I just wanted to say thank you for coming to speak with us. I was so moved by your story–it is one that I will carry with me throughout my career.

We had a bit of fun while in Portland . . . for a future post!

I have been invited to share my story with second-year medical students at Oregon Health Science University. It inspired me to make a video of my exercise class that I participate in twice a week. I have really gained in strength, balance, and coordination since I started the program last October, after my second rhizotomy.

I have been given a full hour to talk to the students. I hope there is a good turnout! I’ll be speaking right after a very entertaining radiologist, who also happens to be an old friend, so chances are he’ll encourage the audience to stay for my presentation.

My talk is in three parts: the first about the nightmare of getting diagnosed and the multiple medical errors made. The second part is on the treatment approaches via conventional medicine plus alternative medicine, including the ‘controversial’ areas of CCSVI/Dysautonomia and diet/lifetstyle. And I end the presentation with the picture of my life today.

I’ve been sending out the youtube link of my talk to several people as I want people to know my story and also to see how well I’m doing. I am hoping that I will be able to speak to other health professionals about my experiences. At my exercise class this morning, a nurse suggested that I approach nursing schools as they train nurses to be advocates for patients. Having worked in the system myself, it takes a fair bit of guts to challenge the power hierarchy and doctors are not always willing to listen. But I do think it could be a place to start.

I sent the link to the team in Winnipeg at the Centre for Cranial Nerve Disorders. This afternoon I received this very special e-mail with the subject “Well done”

Hi Jennifer;
I enjoyed your MS Society presentation. It was excellent, highlighting the suffering and obstacles associated with TN (and MS) while providing inspiration and hope.
Thank you for sharing!

Anthony M. Kaufmann, MD, MSc, BSc (Med) FRCSC
Associate Professor, University of Manitoba (Neurosurgery)
Director, Centre for Cranial Nerve Disorders
Co-Director, Centre for Cerebrovascular Disease
Co-Director, Winnipeg Centre for Gamma Knife Surgery

This is a high compliment from a man who is in huge demand from so many people around the world desperate for help. I wrote back and said, “not only did you save my life, you made my day!”

So, I decided to open up the comments section on the video and I posted his comment there.

Other nice comments I’ve received include:

You’re a great speaker. And you look fantastic!

you are inspiring and speak so eloquently about your experience…thank-you for sharing.

Wow! Thanks for sharing. I understand more now about what you’ve experienced.

Thanks for sending this video – you look and sound strong and fit.
Your story will encourage hope to all who hear it.

It was excellent! Your story makes me want to scream. You need to write a book! I’m proud of all that you are doing to bring awareness to others about MS and TN.

That was a very nice, quite personal talk And…You’re looking strong!

I just finished watching your talk on youtube. You present very well. You do give people hope about MS.

Good to see you’re advocating for this, it seems to me this is what you are good at.

Comments from facebook friends:

Bravo Jennifer! Well done!

You shine!

How interesting. Very well done. Congrats.

Wow Jennifer….what an excellent presentation. You certainly sound like an expert to me. You give such an encouraging message….

Just listened to your talk Jennifer. What an amazing testimony of survival! It’s humbling to know that there are some things worse than death, and that you were required to face that. I especially appreciated the “reasons to hope” that you shared! May you continue to improve and boldly encourage and lead others to better health! You inspire!

well done the reasons for hope will inspire many with MS and i bet there will be a run on lavender bikes. you have amazed me since the BC Aphasia centre days and you still amaze and encourage me Jen. so proud to be your friend.

Great job my fellow MSkuteer you rocked that!!!!

Thank you, again, for mentioning CCSVI! I think they’re seeing the light a bit more!

Always enlightening to hear and rehear your story!

Yes Jennifer, you are a “gifted” presenter and an important voice out there! Everything you do is with excellence!

You are an excellent speaker, and you look mighty fine in those high heels, too! You did a great job describing your journey in only 11 minutes. I agree with Dr. Kaufmann’s comments. Well done!

And from one of my professional speaking friends, a comment that made me laugh:

Love your outfit! You’re looking great! Oh, yeah, content…it was good to see and listen. You’ve still got it! (more exclamation marks than I’ve used in a year!!)

So, keep in mind that these people are friends and acquaintances — nothing purely objective. But one of my friends sent it to another friend of hers with MS, who was OK with me getting her feedback:

I thought the video was great. I can totally relate to the isolation she must have felt . . . Thanks again for sending it to me. I found it very moving.

I was invited to be one of the speakers at the BC Launch for Women Against MS, or WAMS. As 75% of people with MS are women, and Canada has the highest rate of MS in the world, MS is a disease of Canadian Women.

I invited our local federal Liberal candidate, Jody Wilson-Raybould , to attend and present the welcome letter from Joyce Murray, Member of Parliament for Vancouver Quadra, the riding where the event took place. The letter that Ms. Murray wrote was thoughtful and moving, as she had a personal connection to MS and has visited MS groups, including a visit with our Kitsilano Group.

All in all, it was a successful launch. Other speakers were Karimah Es Sabar, President and CEO, Centre for Drug Research & Development, and Dr. Cornelia Laule, WAMS grant recipient.

Dr. Laule brought all the researchers in attendance up on the stage with her. It was a really nice gesture as she described the important work they are all doing to help us.

I wore a few pieces of jewelry that represent hope that I put on as I got dressed. I had a ring from my mom, a teal bracelet from the Trigeminal Neuralgia Association of Canada (you can see it on my right wrist), starfish necklace and earrings from a special day with my husband, Daniel, and a pin in the front of my dress from the Evelyn Opal Society , who was one of the founders of the MS Society of Canada.

I also got a chance to reconnect with Sarah Le Huray and Lori Batchelor . I regret not getting a photo with Lori but Sarah was on the ball and came by to take a photo!

I’m pleased with how the evening went and I hope I get asked to speak again.

On Wednesday evening, I went out to Surrey for an educational forum on “Current and Emerging Therapies” hosted by the MS Society. The organizers told me they were expecting about 50 people but were surprised that 147 had registered. I jokingly told them that if they had put my name on the poster, we might have been able to draw more! I’m not a neurologist but I think there are many of us in the MS Community who have very interesting stories and many of us have a lot of knowledge. One thing that this new MS community doesn’t really know about me is that I know a lot of people.

Some of my friends and supporters came to the event and I appreciated that a lot. One of them volunteered her husband to come and film my presentation, and I am so thrilled that he did because it has been a long time since I’ve spoken publicly about anything. I was pretty relaxed seeing the warm and friendly faces in the room.

The hardest part of putting the presentation together was keeping it to 10 minutes. My story is complex and there are a lot of details. But now that I have the arc of a basic story, I can adjust it to different audiences. One day I hope to speak to a room of doctors and/or medical students to encourage them to maintain their curiosity and question everything and everyone, even if that person is a well-established specialist.

I got really good feedback from people and the most special feedback was from one of my MS mentors who told me that my presentation was much better than the neurologist’s. The difference, of course, was that I was telling my story and tried to stay optimistic. The neurologist gave information on drugs. Most of the information she gave is widely available online, and most of us are keeping up-to-date. However, as I was there, I enjoyed hearing a summary.

I hope I can get a chance to do this again.

I met Stephen Hammond through the Vancouver chapter of the Canadian Association of Professional Speakers (CAPS). I joined because I wanted to learn how to communicate issues related to aphasia and my work as founder of the BC Aphasia Centre. I learned so much there from our guest speakers and other members. During that time, I led the organization I founded to transfer assets to a larger organization to continue the work. But I stayed involved with CAPS on the board and made plans to try to develop a new specialty area. Stephen was President of our chapter during my first year as treasurer.

Stephen is a former lawyer who in now a speaker, author, educator and trainer in workplace and community human rights. Over the years, Stephen and I have remained friends. We have a common interest in politics, and his mother was an MLA in Manitoba. Stephen and his husband Jack have been generous with us, inviting us to interesting social events. And every time I ask for a donation for something, they are there to support me. They are usually among the very first to step up. It means a lot to me to have that unquestioning support.

During my time at CAPS, I became known as a networker and informally coached a couple of colleagues on the art of networking. It served me well as I have a very good memory for faces and names. I pray that the MS doesn’t take that away from me.

In 2009, I helped Stephen get a chance to meet up with his old professor from Osgoode Hall, the former UN High Commissioner for Human Rights, Louise Arbour.

He wrote a nice blurb about it on his blog.

On Monday night at the University Women’s Club in Vancouver, I was lucky enough to get a ticket to a sold-out speech given by Louise Arbour, thanks to my friend and networking maven, Jennifer Sweeney. Anyone who knows me, knows how much of a fan I am of Ms. Arbour. I’ve talked about this uber-talented and brilliant woman, since she taught me Criminal Law at Osgoode Hall Law School years ago.

As I look at this photo and read the blog, I find myself missing that person who could ‘work a room’ and figure out who should meet whom. That was my favourite thing to do, to help people connect with each other as my way of helping. Exactly one year later, my serious facial pain started and I haven’t been the same since. But since my surgery (balloon compression rhizotomy of the right trigeminal nerve) almost four months ago, I am starting to come back . . . stay tuned.

My personal fundraising page can be found here.

Thanks Stephen and Jack for believing in me.