I mentioned my health care team in my talk and I didn’t have time to mention or name the many people who are supporting me. I am incredibly fortunate that I live here in Vancouver and have access to all of these resources. The major take-away message is that not all health professionals are created equal. Errors or neglect by prestigious experts can work against you if they make quick judgements. The trail of erroneous records still bothers me but there is not much I can do about it.

I’ll start with my core traditional medical people who have helped me, especially with managing the MS and TN:

Neurologist – UBC MS Clinic
Neurosurgeon – Anthony Kaufmann, MD FRCPC
General Practitioner/Family Doctor – Dr. Karen Van Wyk

In addition, I have a couple of other chronic conditions — sinusitis and spinal stenosis that currently require monitoring.

Sinus Surgeon – Amin R. Javer, MD FRCSC FARS
Spine Surgeon – Dr. Marcel Dvorak

I also require excellent dental, optometry, and pharmacology support

Dentist – Dr. Ernst Schmidt, Pacific Spirit Dental Centre
Optometrist – Dr. Patricia Rupnow, West 10th Eyes
Pharmacy – Rudy Chin (owner), Ed, Amy, Rebecca, Pharmasave at 30th and Main

Alternative medical practitioners, some of whom were there to help keep me grounded and supported when I was ignored by traditional medical people in Vancouver.

Venoplasty surgeon – Michael A. Arata, M.D., Autonomic Specialists, Newport Beach California
NUCCA chiropractor – Dr. Michael Foran, DC, NUCCA Spine Clinic
Naturopath – Dr. Alexina Mehta, N.D.
Acupuncture – Jennifer Jellis, RAc KLINIK
Psychologist/Counsellor – Myrna Driol, M.A., R.Psych
Massage Therapist – Jessica Farrow, RMT, Owner of Honey + Garlic Health Studio

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.

Eight days ago, I received the MRI report and CD in the mail, and then the next day I had an appointment with my neurologist. It’s all good news as far as the MS goes. No new lesions, no change. And the neurological exam has even improved. So, officially this makes me NEDA or “no evidence of disease activity”.

I haven’t had a chance to really examine the images closely until today. The two images above are from as close to the identical slice through my head as I can get. The image on the left is the newest one (March 21, 2015) and the one on the right is from my very first MRI (May 19, 2012.) It’s encouraging to see that things look much the same. I am not sure if the greater darkness of the new image makes some of the lesions look smaller but it did give me some encouragement.

The neuroradiologist who helped me look more closely at the images has given me a couple of names of other neuroradiologists at VGH so I can view the images more closely and ask specific questions. I had requested detailed reporting on the most problematic lesions but the report only stated that there was no real change. And although that’s good news, I’m looking for visual evidence of healing!

The MS Society published some photos on flickr from the WAMS event on March 31. While it’s nice to see that there are several photos of me and Daniel talking with people, there is only one distant shot of me speaking on the podium at the lectern. There would have been more but my photographer was busy filming my talk! I guess I was the low profile speaker. Note to self — bring two cameras . . .

Stephanie Mosher, Corporate Relations Specialist at the MS Society, and I spent a lot of time talking about the event. She did all the work organizing the event but we bounced ideas around. I suggested that since we would be holding the event in the federal riding of Vancouver Quadra, that a greeting from the Member of Parliament would be a nice gesture. As I have known Joyce Murray for several years, I offered to contact her office and see if she might be available. But as parliament was in session on that date, her assistant said that they would be able to provide a letter to be read at the event. So, we invited Jody Wilson-Raybould , the official liberal candidate for Vancouver Granville, to read the letter on behalf of Ms. Murray.

I thought the letter was really nice and I managed to get a copy of it. She mentioned visiting our Kitsilano Self-Help Group last year, as well as her personal connection to MS.

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.