Richard & Elizabeth Evans family, Vancouver, ca 1910

On Saturday evening, October 26, there was a special event at Mountain View Cemetery, “All Souls”, the 9th Annual Night for Honouring the Dead. Shortly after 6:00 pm, there was an aboriginal chant, then the lighting of a Swedish fire, an interesting log that burns from the inside.

In the Celebration Hall they were serving tea and had materials for making memorial candles. I brought photocopies of photos with me and we used them to decorate the candle holders.

Then we walked over to the four side by side plots where the majority of my ancestors are buried, in the section called OLD. All the above in the photo are there, except for Anne and Will. In addition, two of the Evans children were buried as infants in 1899 and 1901. My biological mother Elizabeth (Evans) Fleming (1925-2013) was buried there this past April, and her sister Barbara Evans (1927-2005) had her ashes interred at the same time.

Mountain View OLD/3/02/021/0013 to 0016

My great-aunt Anne (1898-1999) was buried with her husband Bill Metcalfe in ABRAY. Coincidentally, they are in the same row, about 10 metres from where my adoptive mother Maureen (Evans) Sweeney (1933-2010) is buried with her mother Laura (MacDonald) Evans.

ABRAY /*/15/*/0592

Once in a while I hear from people who used to be in my life. They ask me how I am, usually by e-mail. Or the odd time I see somebody who knows I have MS and they wonder why they can’t see it. A couple of months ago, I dropped by an old friend’s workplace and she wondered where my cane was.

For people who don’t know I have MS, many say that I look great. In fact, I think I do look better than I looked 5 years ago. I am at a good weight, I eat very well when I’m not in pain. Of course, I never dreamt that eating could be painful.

I continue to take Tecfidera. The most encouraging thing with it is that brushing my teeth feels almost normal. Ever since the rhizotomy Dec 27, 2012, I’ve had a buzz at my lower right teeth when brushing — that used to be a trigger point for the pain, or what the oral specialist called ‘atypical odontalgia’.

I have eliminated dairy, wheat, refined sugar and alcohol from my diet. I minimize salt. I eat as much organic food as possible. I take supplements, including alpha lipoic acid.

I used to spend a lot of time pursuing pleasure in my life, through food, conversation and social activity. Now I am focused on avoiding pain. I will do anything I can to avoid the pain I experienced.

So, how am I? I’m a different person now. Thanks for asking.

At the Allies in Health Fair, panelists were asked to respond to specific questions and relate it to their own experiences as patients.

I prepared a simple handout quickly the night before. It was good to see that the other panelists touched on the same points. I’ve reproduced it here with links to relevant stories about poor communication demonstrated in my care.

What obstructs good communication?

Not taking time to set the tone – avoid being abrupt and imperious

Not listening – see if you can manage to listen without saying anything for at least two minutes.

Not asking appropriate follow-up questions. If you have already made up your mind about somebody, you will miss important information.

Reinterpretation of the words of the patient . If a patient describes something to you, use their words in a report.

Omitting information patient tells you. Resist the urge to be the editor of their history.

(e.g., dismissing visit to ER because of numb arm )

Taking a history for the attending physician who then dictates the report. We all learned that telephone game when we were children. This common practice seriously affects accuracy of medical records.

What, from a patient’s point of view, could improve communication with health care providers?
Better listening

Suspension of judgement

Not leaping to conclusions

Ask for clarification if stories aren’t clear (e.g., why does your wife say her mother is alive when you say she’s dead? )

How should health care professionals ask difficult, but necessary, questions?

Be direct but sensitive

Try to think of how you would ask a relative or friend

Maintain curiosity

I had copies of this excellent article from a series called ‘On Being a Doctor’, Curiosity , by Faith T Fitzgerald, M.D., compliments of my good friend, radiologist Marc Gosselin.

Yesterday, I was a panelist at the 5th Annual Allies in Health Fair at UBC. I had been inquiring about the Health Mentor program and then was invited to participate as a panelist. I was on a panel to discuss “Barriers in health care communication” which was a perfect topic for me. I could have used the whole session but was sharing the platform with three other women. One had Parkinson’s disease, another NMO, and the third was a member of the Patient Voices Network. The woman with NMO, Lelainia Lloyd was pretty impressive and I expect we will be seeing each other again. You can get a sense of her and learn about NMO by reading her blog posts at Someone Like Me .

Most of our audience were in areas like pharmacy, genetic counselling, dietetics, kinesiology — a couple of us were disappointed that there weren’t any students in medicine, nursing, occupational therapy or physiotherapy. Dr. Perry popped in near the end so he missed my presentation, but it was really nice that he came by. I had let him know that the event was on and I encouraged him to send students over.

After my panel, I went to the panel on Aphasia with the Aphasia Mentoring Program . I had met Gord earlier in the refreshment area for panelists. He reminds me a lot of Brantford’s Steve Goff as he has presence and charm and no words.

Dr. Barbara Purves and Gord

I also spent time in the main exhibit hall, meeting people from different organizations and talking with a couple of young people who are going to be great care providers when they’re finished their programs, David, a medical student, and Andrea, an OT student.

I recently asked an experienced neuroradiologist to review my MRI from 19 May 2012 as I wanted to know if my brainstem lesions were visible on that MRI. I wasn’t sure if I would even get a response. I am so amazed and impressed. I have encountered the extremes in our healthcare system but once in a while the response is more than you could hope for. He was generous and very kind in his willingness to help me out.

In the letter I had written to him:

I am requesting a favour from you . . . I would like to know two things.

• was the lesion in the pons visible on the first MRI?
• was the lesion in the medulla visible?

As these lesions would explain my facial pain and my GI problems, I wanted to fully understand the negligence of neurologist #3.

On Thursday, October 18, I received a response. He reviewed all three of my scans:

In answer to your question, both the lesion(s) on the right side of the pons (there is probably more than one) and the lesion in the medulla were visible on the first MRI, although not as clearly shown as on the MRI at UBC which was performed with a dedicated MRI protocol and somewhat thinner slices.

Your case is unusual although certainly not unheard of, in that you have quite a number of lesions on your brain MRI (many of which appear old) with little in the way of “classical” symptoms and signs.

That tells me a lot. Yes, my MS is old. And yes, my presentation is unusual. Neurologist #3 had everything he needed after that first MRI to diagnose my MS and my pain. Perhaps neuroradiologists should be given the authority to diagnose MS and remove it from the hands of neurologists? I am sure that we would get earlier diagnoses that way. In my case, it would have saved the system a lot of money.

And at least two lesions on the right side of the pons — yikes. No wonder I had so much pain.

I felt it was important for future patients at the hospital I was in (Dec 27, 2011 – Jan 6, 2012) to continue educating the doctor who was in charge of my care — the one who almost pulled my feeding tube out because I was being ‘non-compliant’ with the treatment plan that was developed without any input from me. At the time I wrote the first e-mail, I knew I had MS but I was unable to identify a lesion in the pons. I was holding onto hope that the facial pain had been resolved, although when it worsened a couple of weeks later, I was pretty sure I had MS-related trigeminal neuralgia .

August 24, 2012

Dear Dr. M:

I’ve been working on some trauma issues related to my health and the care I received. There are a couple of outstanding items I want to bring to your attention and hope that this will be of value to you with future patients.

First of all, the sinus infection and subsequent surgery has been most effective in removing my facial pain. I have been able to manage without Lyrica since May. Following the surgery, I have had two MRIs that reveal MS type lesions in my brain — cortex, cerebellum and brainstem. I haven’t been officially diagnosed yet but the numbness in my feet that I reported while in hospital is likely connected to that.

I was powerless in my situation and wasn’t prepared to argue with you when you were my lifeline. Yet, it was difficult for me to have you say that my swallowing difficulties were ‘perceived’ when there had been no assessment of it. As I was being treated as psychiatric attention-seeker, there was no discussion with me about my care at all, yet, I was supposed to comply with the ‘plan’. It was very tough.

For a bit of background, working with swallowing disorders was one of my areas of clinical expertise. I did focused training on it during my clinical fellowship at Marshfield Clinic in Wisconsin. Ironic, eh? I have taught lots of people about swallowing, including other speech-language pathologists, occupational therapists and radiologists. Not being seen by any swallowing expert was difficult for me. Fortunately, I had compensatory strategies to use to help me as things improved, reaching near ‘normal’ by late February.

The only ‘assessment’ I recall having was one of the residents who ran in to check my gag reflex. Ever since then I have been bothered by the thought that the old myth still survives in medicine. An intact gag reflex tells you that the gag reflex is working. It tells nothing about swallowing.

Thank you for listening. My great hope is that you and your residents take advantage of some internal expertise and learn a bit more about swallowing.

Thank you for your care. I needed your help to survive. Now that I’m alive, I need to figure out what to do with the rest of my life, even if it leads to greater disability. I may continue to do some more speaking and teaching once I get on a handle on the next step of my health journey. I have just started reading “The Autoimmune Epidemic” where surveys have revealed that 45% of people (mostly women) in the early stages of autoimmune diseases have been labelled as hypochondriacs. I am not alone.

December 3, 2012

Dear Dr. M:

I just wanted to give you an update on my status. Following sinus surgery, I had an MRI that revealed evidence of demyelinating disease. A follow up MRI supported the probability of MS. Unfortunately, my neurologist didn’t believe I had MS because I have no evidence of motor problems or reflex problems. I believe this is why I have been dismissed as a ‘psychiatric’ case.

I worked with my great new GP to get a referral to the MS Clinic and had the official diagnosis on November 15. It was an easy diagnosis for neurologist #5 to make just looking at the MRI and listening to my history. He believes I’ve had MS for at least 7 years now. There is a lesion on my right pons (trigeminal nerve) that is consistent with my recurring facial pain. And the lesion on the left medulla (autonomic nervous system) likely explains my gastrointestinal/slow digestion problems.

It’s a relief in some ways to have the diagnosis as it’s validating. I can’t imagine what it would have been like for someone like me before MRIs. Likely would have jumped off a bridge.

It has been a long and difficult road over the past 15 months but at least I have answers and can move forward.

I did mention my numb feet several times in hospital. It didn’t make it in any chart notes or on my discharge summary. Interesting that I have reported numbness on other body parts at different times and it never seemed to make it into reports. I always tried my best to give full and accurate information.

My grandfather, Charles Edward Evans , was the father of both of my mothers who were sisters. As I grew up, my parents always told me that I was ‘adopted’ and I didn’t learn who my biological parents were until after my grandfather died. I was 12 years old.

After mom died, I found a photo of him among her pictures. I had known about him being a pilot in the First World War.

Charles Edward Evans, Royal Flying Corps, WWI

I have since found a cousin of my mom’s, Len Metcalfe, making him my first-cousin once-removed. I’ve been meaning to write about that visit for some time and will soon. He was close to my grandather (his uncle) and told me some things about him that I liked.

For now, I’ll just say that one of Charlie’s wartime friends, Bill Metcalfe, came to Vancouver after the war and married his sister, Anne.

After my biological mother Betty died this past April, my sister came to visit from New York. She and I decided that we would like to have everyone who descended from Charles to be commemorated at Mountain View Cemetery in the Evans plot. My sister has a gift for words and created the epitaph.

I wanted him to be remembered with his full name.

The “final curtain” on CCSVI and Liberation Therapy for Multiple Sclerosis? .

photo by Ward Perrin

Pamela Fayerman had a longer version of her article on her blog. I’m pleased to see she questioned the comment about a “final curtain.”

The photographer wanted to take the photo with natural light by a window. I like this photo better than the one used for the print edition. Unfortunately, our dining room still looks like its last renovation in the 60s. Fourteen years in this house and we’re just about finished upstairs. My health has interfered so much with our plans and our lives. That’s how life is.

The extended article on her blog can be found here .

Link between venoplasty, MS needs more study
JENNIFER SWEENEY Jennifer Sweeney is a retired speech- language pathologist and consultant who worked with preschool children, young adults and seniors in the health care system and in private practice.
The Vancouver Sun
Oct 11 2013

In 2005, I had three weeks of leftsided facial numbness. In 2009, I started having some strange sensations on the right side of my face that my dentist thought could be from the onset of trigeminal neuralgia ( TN). I asked my GP for a referral to a… read more…

Well, that was cool. I am trying e-paper for the Vancouver Sun and it gives you the options of sharing stories on your blog. It looks sharp! I’ll scan the hard copy as I don’t know it this link will be there forever. It’s a nice feature. If you click on the picture, you get a view of the article as it was in print. And if you click on the ‘read more’ link you get a different display with no pictures.

I’ve had a few interesting calls from people who read the story and an e-mail this morning. I’m easy to find on a Google search and I appreciate the some people have taken the time to look me up.

My cousin wrote:

Jennifer, thank you for writing that article. I am sure it was difficult but it is very enlightening and could help others who are misdiagnosed, as well as encourage more research . . . it is often on the backs of those who are courageous that these battles are won

I wrote back to him and joked that there is a fine line between courageous and stupid.

And a dear friend wrote to me and said I was very brave. That meant a lot to me.

Yesterday, a photo of me holding this picture of my jugular veins, was on the front page of the Vancouver Sun, and again on the front page of the next section. In the article, I had been quoted along with a short bit about my diagnosis and recent MRI to assess my veins. I got an e-mail from a friend in Calgary who saw it and several facebook messages from people who were glad to see my smiling face and were sorry to hear of my diagnosis. I used to be very active and I knew a lot of people but I have not been able to do the things I used to do.

Many people asked me how I managed to make the media contact. It’s all about timing and you never know what opportunities may cross your path. This time it was the same type of coincidence that led to my favourite media piece ever, the CBC interview with Shelagh Rogers .

I contacted Pamela Fayerman, the Vancouver Sun’s Health Issues reporter, on the weekend as I hoped she could do a story on trigeminal neuralgia as Monday was the first International TN Awareness Day. I was late in getting around to it but I felt an obligation to the TN community to at least try as there had been a really good article on TN in the Victoria Times Colonist.

A friend and neighbour who has been involved in some great health initiatives for cardiac care gave me Fayerman’s contact info and I sent her an e-mail. She responded, inviting me to call her on Monday, so I did. We had a nice conversation and we talked about TN and MS and she asked me what I thought about the ‘liberation therapy.’

I’ve just started looking into it knowing that I have the blood flow problem. While we talked, she asked me if she could quote me. I was happy to do that. Then she asked me if I’d be OK with a photo and the next thing I knew Ward Perrin was on his way to the house to take my photo. He used to live in the neighbourhood and he knew the people who sold us the house. While he was here he asked me if they gave me any copies of the scan and I told him I only had digital but I could print one up and see how it looked. He thought it was perfect

Anyway, I believe she sort of misquoted me, making it sound like the Traboulsee study was making me rethink the procedure. I let her know what I thought but she didn’t agree with me, as she says she portrayed me as being in a contemplative stage, and that’s true. I told her I generally liked the piece and really liked the way she ended it.

What I do like is seeing my name right beside Traboulsee’s face. The major irony around all of this is that I requested a referral to Traboulsee in February of 2010 for TN and he turned down the referral because he was limiting his practice to MS. If he had accepted the referral, I likely would have been diagnosed with MS back then. Instead I saw a young man who lied to me about my serious drug reaction, who told me that my left arm numbness was ‘normal’ and wrote a report that omitted all of that information. I refused to see him again.

Fayerman also invited me to make a pitch for an op-ed for publication on Friday. I submitted it yesterday and it looks like it’s a go — unless of course, other big news bumps it.

You’ll see the photo of my jugulars again.