I love this interview because it’s a good summary of her amazing story, and Dr. Wahls encourages people to grow their own food. This fits in so well with our local farmers markets and community gardens, supported by the City of Vancouver.

This interview is a bit older but it really accurately describes how you just do your best to move forward even when you know there is something not quite right. The interviewer was really interested in learning about the emotional and psychological experience of dealing with a progressive neurological condition.

And the fact that she, as a doctor, as well as medical colleagues didn’t know what was happening, made me realize how striking it was that my pediatrician friend was the first one to connect the dots. He is an impressive diagnostician! The main difference was that he actually LISTENED to me, then did a lot of thinking and called me back to discuss further. Unfortunately, the doctors I was seeing, a neurologist and a gastroenterologist, totally pooh-poohed his suggestion that it could be MS.

I experienced a degree of denial for many years, dismissing general symptoms as “burnout” or “aging”. Her description of occipital neuralgia is similar to my trigeminal neuralgia.

She is the ultimate self-advocate and a real inspiration to me!

I have been preparing my talk for next week when I came across a letter I wrote to the senior internal medicine specialist when I was admitted to hospital in late 2011.

June 25, 2014

I am writing to you regarding our interactions from December 27-30, 2011. I had been admitted through ER to address serious malnutrition. It took me several attempts to get admitted as I had been abandoned by my GP and neurologist and was suffering a lot of pain while eating and had been unable to move my bowels for weeks.

Upon reviewing my records, I noted serious errors in history-taking by Dr. E, who proceeded to make me sound delusional. He was unable to distinguish between my adoptive family and my biological family. Unfortunately, you made no attempt to clarify any of the issues. You did not request a neurology consult for my facial pain or a speech-language pathology consult to address my swallowing problems. And you were the one to refer me to the care of Dr. M as you must have been convinced that I had an eating disorder.

I was disappointed and surprised that you did not write a single chart note. There was no record of our conversation about my right-sided facial droop. ( see enclosed blog post )

I requested all of my records two years ago because I needed to understand why I was laughed at following my discharge and left on my own to diagnose myself. Once I had a brain MRI, I knew I had MS. Unfortunately, because of my lack of visible symptoms, the neurologist I was seeing refused to diagnose me and argued with me. So I went right to the MS Clinic.

I was officially diagnosed with multiple sclerosis by Dr. (neurologist #5) on November 15, 2012, after a severe exacerbation of the trigeminal neuralgia, involving all three divisions of the nerve. He believes I have had MS since at least 2005, which helps me to understand the complexity and ‘atypical’ nature of many of my worsening gastrointestinal symptoms in addition to the trigeminal neuralgia. I have multiple lesions in the right pons as well as the left medulla, consistent with all of my reported symptoms.

I hope in future if you meet another woman like me that you consider the possibility of MS. I had the additional misfortune of a neurologist who did not believe I had MS either, even with the subsequent MRI evidence. As my husband and I have both learned through this difficult and painful ordeal, we will remind doctors that atypical presentations often require a bit more curiosity and investigation.

The hierarchy in the medical system does not seem to encourage questions of experienced clinicians. My radiologist friend calls it Eminence Based Medicine. The term originated from O’Donnell M. A sceptic’s medical dictionary. London: BMJ Books, 1997. It’s used in an amusing article by David Isaacs and Dominic Fitzgerald, Seven alternatives to evidence based medicine :

Eminence based medicine—The more senior the colleague, the less importance he or she placed on the need for anything as mundane as evidence. Experience, it seems, is worth any amount of evidence. These colleagues have a touching faith in clinical experience, which has been defined as “making the same mistakes with increasing confidence over an impressive number of years.”7 The eminent physician’s white hair and balding pate are called the “halo” effect.

Stephanie Mosher, Corporate Relations Specialist of the MS Society, invited me to the Surrey Women in Business Awards, to help promote WAMS (Women Against MS) and to inform people of the upcoming launch on March 31, and the gala lunch in November. Justin Trudeau , leader of the Federal Liberal Party of Canada, was the guest speaker at the awards lunch. I was standing at our table when I glanced over at the doorway and noticed Justin walking slowly into the room. I caught his eye, approached him and introduced myself by saying I was a member of Team Jody , I have MS and would be be OK if I took a picture with him in front of our poster board. He was gracious and complied. I am really glad I managed to be the first one to get a photo as I couldn’t get close to him later on.

Earlier I had spoken with Hon. Penny Priddy , the only woman in Canada to be elected at all levels of government, from school board, municipal council, member of the provincial legislature and cabinet minister, and federal member of parliament. She and I knew each other from her years as the honourary co-chair of the Women’s Campaign School when I was president of the host organization, the Canadian Women Voters Congress . She was very interested in knowing how I was doing and what I was doing to maintain my health.

I continued to help promote the event and managed to get several photos with some local high-profile people. Many of them had connections with people who had MS, so it made conversation easy.

I managed to get a photo with Tamara Vrooman, President and CEO of Vancity Credit Union , the major sponsor of the awards ceremony. She and I had met some years ago when I ran for the Vancity board of directors. And I asked Steve Darling of Global TV (and MC for the event) for a photo.

After the lunch, across the room, I spotted Vikram Vij , celebrity chef and member of Dragon’s Den . I told him I was a neighbour (we live about 5 blocks away from him) and I would love to have a photo with him. He was gracious and bowed to us after the photo.

There were some additional politicians there, including former MP, Sukh Dhaliwal , and federal candidate, Wendy Yuan.

I am super-excited about the gala lunch in November to hear the speakers, Janet Kestin and Nancy Vonk , creative campaign developers (Dove Real Beauty Campaign) and the leadership trainers of their company Swim .

But the best part about yesterday was feeling like I was in my element again.

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.

I had the opportunity to be a volunteer patient again last week, with appointments on Wednesday, Thursday, and Friday. This time, all of the instructors were neurologists. It was a great chance for me to tell my story and to help them and the students consider the possibility of cases that are not textbook cases.

All of them detected my loss of vibratory sensation in my feet and a bit in my hands, as well as the significant sensory loss on the right side of my face, post-rhizotomy. The one on Friday also dectected the pale left optic disc that Dr. Honey had detected. (I’m seeing my optometrist today, so I’ll ask her opinion.) The Thursday and Friday neuros noticed that I had facial asymmetry with a reduced nasolabial fold on the left. The one on Thursday also mentioned something about my left eye that I didn’t quite get, but it indicates that I have a lesion affected my left facial nerve.

The Wednesday neuro concluded that all of my reflexes were normal and recommended I not proceed with spinal surgery. But the one on Friday, Dr. Neil Cashman , spent a fair bit of time looking very closely at my reflexes and found a few abnormalities, including the ones that Dr. Dvorak had observed with the brachioradialus reflex recruiting finger flexion, an abnormal response. Granted, Dr. Dvorak also had the MRI information and knew exactly where to focus his attention. I hadn’t given Dr. Cashman any of that info but I did challenge him to examine me without the diagnosis to start with and he was willing to do it. He also noted that the triceps reflex was stronger than the biceps reflex, and that was abnormal. It makes sense as the reflex centre for biceps is at C5-6 where I have the spinal degeneration happening.

These exams were all about cranial nerves but it appears that all of these neurologists were a bit more interested in getting their students to think about bigger neurological questions and how the systems interact. I found them all really interesting and felt like I learned a few more things about neurology and my own case.

Dr. Cashman told me that he is connected with GF Strong (where I used to work) with the ALS Clinic. I found this interesting video on line: