I had the great pleasure of meeting Dr. Wahls at a conference held here last month, sponsored by the Canadian Neurovascular Health Society .

As soon as I heard she was speaking, I signed up. According to the conference organizer, I was the very first person to register. (For a nice summary of the conference, Joan Beal wrote up a post about it. Of course, that was another thrill for me — the chance to meet her! She is a true champion and very smart woman and I was really glad she attended.)

The day before she spoke, I found myself face to face with Dr. Wahls. I desperately wanted to know how to get across to people with MS that it’s worth trying her diet. She told me that I just need to accept the fact that some people are so attached to their foods and habits that they will resist. The best I can do is to encourage and set an example. But it continues to be very difficult for me to watch others in the MS community in decline while I continue to improve. No fatigue, able to work out, able to see clients again . . . I want this for everybody.

It was wonderful for her to have the chance to continue spreading the word about her own amazing story and others’ successes by following The Wahls Protocol.

After the talk, Dr. Wahls had a book of The Wahls Protocol signing in the hallway. I had mentioned to the audience that we have a Wahls Protocol Support group in Vancouver, and I encouraged people to talk with me if they wanted more information. When I went out to the book signing, there was still a long lineup. I waited until the end so that I could talk with Dr. Wahls.

Dr. Wahls was so generous with her time. She answered everybody’s questions thoroughly. I first mentioned to her that I had been in Marshfield, Wisconsin at the same time that she was there. She was a physician at Marshfield Clinic and I was doing my clinical fellowship.

I talked to her about the drug I have been taking for two years. The natural way to promote the antioxidant NRF2 pathways is through diet, exercise and stress reduction — all parts of The Wahls Protocol. I considered the side effects — which for me, were minimal — the recent cases of PML, and the recent discovery of the lymphatic system existing within the brain. After discussing a bit more with my husband, I decided to discontinue Tecfidera.

I bought another copy of her book and had it autographed. I’ll use this as a fundraiser or a gift for members of our local support group. I was really pleased to see how many of our group who attended the conference.

I left the conference early as there was election work to be done . . .

I shop regularly at Organic Acres , a nice organic store a few blocks away from my house. One day I started a conversation with one of the employees and I enjoyed our continued interactions. I told her a bit about myself and gave her one of my business cards. When I learned that Sarah was an artist, I took one of her business cards and viewed her website where I recognized her talent.

One day at the store, I asked another employee where Sarah where she was as I hadn’t seen her on her regular shifts. I learned that she had a deadline for the work she was doing illustrating a book. The next time I saw Sarah she told me that she was hired by Kathryn Govier for the book. I used to volunteer for the Vancouver Writers Festival, so I knew who Kathryn Govier was and had even met her in the mid-nineties.

Sarah told me about the book launch for her book, “Half for You and Half for Me” scheduled for Saturday, April 26, at Collage Collage, 15th and Kingsway. I know that it’s hard for most women to promote themselves, so I took it upon myself to drop off event cards to all my neighbours that I know who have children.

By the time I arrived at the book launch, she had already sold out! I looked through a copy of the book and was so impressed with the beauty of the book and the gorgeous illustrations. I got sort of choked up because I was so excited for Sarah and so proud of her accomplishment. I guess when you are a middle-aged woman with no children, you tend to ‘adopt’ the young people in your life. We asked one of Sarah’s friends to take a photo of the two of us.

The next time I saw Sarah, she told me that the book had been selected as one of “Heather’s Picks” at Chapters/Indigo. That’s so amazing — sort of like the Canadian Oprah endorsing your book!

There is a lovely feature about Sarah Clement in a blog “papergirl” that gives you some insight into who this young woman is and how she lives the life of an artist in Vancouver.

I’m happy to say that I quickly ordered my own copy and brought it to Organic Acres to get signed. Now I’m the proud owner of a signed copy of the first printing of the first edition of “Half for You and Half for Me.”

If you want to know more about Sarah Clement and her work, you can visit her website .

On Wednesday evening, I attended a book launch and a retirement party for Colleen Kelly. After fourteen years as the Executive Director of Vantage Point , Colleen is retiring. She began her work with the organization when it was “Volunteer Vancouver” and through her visionary leadership, transformed it into one that inspires not-for-profits to deliver their missions by engaging volunteers and encouraging them to use their hands, hearts AND their minds. At Vantage Point, they refer to the people who donate their skills and expertise as “knowledge philanthropists” and emphasize the importance of full and joyful engagement.

The BC Aphasia Centre rented a small closet with a window as our first office at Heritage Hall, across the hall from Volunteer Vancouver. It was like having a treasure trove there and we benefited from their example and support. I learned about writing comprehensible by-laws, running efficient AGMs, as well as learning when it was time to encourage and facilitate a merger when we did not have the capacity to continue.

I took advantage of their workshops and other learning opportunities. And they were so nice to me and asked me to contribute to their ‘knowledge bank’. I wrote an article for their newsletter on the process of merging with a larger organization and the commitment of our board to see it through. I see that a blog post is still there that I wrote in 2009 after attending a workshop they hosted. Virginia said nice things about me in the intro.

I am so grateful to Colleen and the rest of the staff at Vantage Point for always making me feel like part of the family. She did a great thing by nurturing and supporting the talent within the organization, so that as she leaves, the vision and mission are still alive.

When I first developed facial pain and had the diagnosis of ‘trigeminal neuralgia’, I did what I could to learn about the condition and treatments. I joined the TNA/Facial Pain Association in the U.S. as well as the Trigeminal Neuralgia Association of Canada . When I joined the US organization, I ordered a copy of the book “Striking Back” which provides comprehensive information about the condition and the variety of treatments. (I received another free copy this year when I renewed my membership and I donated it to the Vancouver Public Library . I’m glad to see it’s being catalogued right now.

Anyway, I have read a ton of stuff about nerves and diagnosis and treatments. I’ve watched the education sessions from the conferences available through the TNA/Facial Pain website. I considered going to the Centre for Cranial Nerve Disorders in Winnipeg for surgery if it was indicated. My sister wanted me to go to New York where I could get the best diagnostic evaluation done. She and I were both frustrated with the lack of local resources or even interest in investigation. I had specifically requested a referral to the neurologist I was seeing as he came highly recommended by the local support group, yet he didn’t seem to have a lot of tools for differential diagnosis other than the MRI. Classic TN is pretty easy to diagnose. If you have ‘atypical’ TN, it’s not as clear. I had great hope when I saw the neurologist that he would say ‘yes, I’ve had people with your problem before and it’s _____ .’ That didn’t happen. Instead, he would look at me with a puzzled expression on his face, then write a note to my GP.

When you are at the mercy of doctors to order tests or prescribe drugs or help you with pain, you are in such a vulnerable position. You get the feeling that they start to categorize you as needy and perhaps think of you as having Munchausen syndrome . The last time I saw the neurologist on February 14, I told him that nothing would make me happier than to never have to see him again.

I had five weeks to wait for surgery.  If I wanted to cancel, I was instructed to do so two weeks before the scheduled date. I went back to the book “Striking Back” and read everything they had on sinusitis.

Dr. Parker E. Mahan, a dental professor emeritus at the University of Florida, says the starting point is figuring out whether the pain is originating in the trigeminal nerve or merely being transmitted through the nerve from some other part of the body.

“All other tissue — bone, teeth, muscles, skin, glands — send signals through the nerves,” he says. “So, it is important to ask, ‘From whence does the pain come?”

On that same page, there was a story of a woman who had congenital sinus problems and was able to reduce her pain significantly with sinus surgery. She says “my own conclusion is to keep an open mind and remember that the cranial nerves can be irritated for a variety of reasons, just like the other nerves in the body.” One of the board members of the TNA/Facial Pain Association tells of her story with Haller cells in the sinuses and her successful surgery.

I posted a question on the TNA/Facial Pain support group page and received a response from a woman in California who strongly recommended I not have surgery. However, she did suggest that using prednisone to reduce inflammation of the sinus nerves could give some valuable information. If it failed to do so, it would be more definitive of TN.

I continued my research. I contacted a specialist in New York and I wrote a series of questions  to Dr. Javer. He had operated on people with trigeminal nerve pain before and it was usually from inflammation of the nerves from infection. I also asked him if the surgery would help with the frontal sinus as I had sensitivities on the ophthalmic branch of the trigeminal nerve. He replied that he believed they would be opening the frontal sinus as well but would review with me pre-surgery after re-reviewing the CT scan.

I found this abstract and took it to heart.

Trigeminal neuralgia associated with sinusitis.

Sawaya RA .

Source

American University Medical Center, Beirut, Lebanon. [email protected]

Abstract

When a patient presents with trigeminal neuralgia, one usually thinks of a vascular loop at the root entry zone of the nerve and consequently of vascular decompression. An image of sinusitis on the MRI may be considered an incidental finding. We present a case of an elderly woman who experienced severe neuralgic pain in the distribution of the trigeminal nerve on the left side following a mild upper respiratory tract infection. Routine MRI revealed severe sinusitis with no pathology in the brain. Following antibiotic treatment for the sinusitis, the symptoms of the neuralgia resolved completely and no other therapy was necessary. A review of the literature reveals a wide variety of etiologies for trigeminal neuralgia. A vascular loop compressing the nerve may be the most frequent cause of trigeminal neuralgia. Nevertheless, other etiologies must be considered prior to decompressive surgery since some can be treated medically.

Then I read some more about neuritis. From “Striking Back”:  “Trigeminal neuritis is often described as dull and burning, sometimes with tingling, numbness and/or hypersenstivity in the affected area. It can occur in any area that the trigeminal nerve serves and it’s always a constant pain, not fleeting as in classic TN.” What was interesting to me is that I had all of those sensations at different times, plus the shooting pain at other times. I also knew that the nerves would scream until I paid attention to the problem, i.e., the source of the pain.

There were no promises or guarantees that all of my pain would be gone or that the sinus infection was the cause of all of my pain. I did know that the more pain you introduce into the system, the more likely it is to overwhelm the nerves and cause them to misfire.  I consulted all of my therapists and asked family and friends for prayers and support.

Once I started the pre-op prednisone and had reduced symptoms, I became more confident that it was a good decision. I knew there were risks and possible damage to other nerves, including the optic nerve. I am legally blind in my left eye — my right eye is my good eye. I was willing to accept the risks as I would prefer to be blind than to live with the pain.

I am a huge fan of Volunteer Vancouver .  The BC Aphasia Centre had a tiny little office next door to Volunteer Vancouver when they were in Heritage Hall.  They provided us with a lot of support — I took books out of the library and attended their AGMs and Open Houses.  I found myself in a community where I could learn new ideas and skills and meet new people.

Since they moved downtown, I don’t get to their office as often.  I get their newsletters, have maintained a personal membership, and the organizations I’m affiliated with get a gentle nudge to join and take advantage of the network, the learning and the general excitement that Volunteer Vancouver generates.  The courses they offer and the network of people they can draw in now makes it an incredibly wonderful place for me to visit.  Going downtown for a 7:30 meeting . . . always worth it because I meet the most incredible people.

This morning I went down to “Books for Breakfast” where the discussion was on Peter Block’s newest book, “Community:  the structure of belonging”, facilitated by Brian Fraser of Jazzthink and Kathleen Speakman, the Executive Director of The Centre for Sustainability .  Kathleen is a graduate of the Women’s Campaign School and she told me that the campaign school was the best professional development course she has taken.  I will get her to write it in her own words for our website.  And, coincidentally, Brian spoke to our board of directors this week to talk about leadership using a jazz metaphor.

We had a great discussion this morning — one of the biggest challenges in the work we all do is to create the spaces for conversation.  I’m looking forward to reading the book and increasing my comfort with the process of “co-creating” a future.

I love spending time in bookstores.  In the last few years, I’ve found some amazing treasures in discount stores.  When I found this book by the brilliant Globe and Mail foreign correspondent, Stephanie Nolen, I had to buy it.

Who knew that there were women aspiring to be astronauts in the late 50s?

Seeking Balance: Conversations with BC Women in Politics .

Chronicles and Interviews with 75 Women who have served BC as MPs and MLAs

Richmond and Vancouver on Friday, November 28 , 2008.

Richmond:

2:00 pm at Hon. Linda Reid’s Constituency Office, 8040 Garden City Road , Unit 130

Vancouver:

5:30-7:30 pm at the home of Darlene Marzari

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Victoria, Thursday, November 27 :

12:00 pm, Ned de Beck Lounge, Rm 357 of the Parliament Buildings, Victoria

Both Lotus Books and Katrina’s Book Store in Cranbrook will be hosting signings in early December.

In Seeking Balance , Anne Edwards shares her conversations with more than eighty British Columbia women politicians, including Rita Johnston , Rosemary Brown , Grace McCarthy , Kim Campbell , Pat Carney , Darlene Marzari, Joy MacPhail and Carole James . These women who served as members of the provincial legislature or the Canadian parliament reveal their ambitions and their reactions to serving in a political system designed and dominated by men. Women struggle to find their place in the pyramids of power. They reach decisions in ways untraditional to Canadian politics; they bring ideas to a system ill-suited to respond; and they see clearly the jagged edges that should be smoothed in order to create a vibrant democratic state. These women–of many ages, across party lines and from all parts of the province–share attitudes and insights into the lively world of British Columbia politics , at home and aross our nation.

Anne Edwards was born, raised and educated in middle Saskatchewan . She has worked as a journalist in radio, television and newspapers and as a freelance writer for various magazines. She has co-written three published books: Exploring the Purcell Wilderness, Cranbrook 1905-2005 , and The Purcell Suite: Upholding the Wild . She has lived for fifty years in British Columbia where she raised a family of four, instructed and managed at the College of the Rockies for a decade and represented Kootenay constituency for ten years as MLA. She retired from politics and the working world in 1996. She lives in Moyie, British Columbia .