We had a beautiful day for the MS Walk. We took our time doing the longer route and when we got to the finish, most people had left! We missed the announcement of the total raised for the day, $125,000. It was a great success. I finally had a chance to meet Dr. Traboulsee who decided to walk in Vancouver this year.

I didn’t raise as much money this year as I did last year. I decided to give people a break and I only sent out one notice to all the donors from last year and told them I would not ask again. About half of them responded and contributed. My combined total for the last two years is just over $10,000.

Our team had set a modest goal of $6,100 and we surpassed it by a couple of hundred dollars. There were only five of us who did any fundraising, so I’m pleased with that.

A special thanks to all of my generous donors!

For the past three days we’ve had about 30-35 young women and men all over our house, with ladders and paint trays, painting every inch of our 103 year-old house. They were such nice people and we can’t believe our good fortune in receiving this gift.

And best of all, Student Works Painting supports the MS Society in this way every year, painting houses of MSers all over the province. They participate in the MS Walk each year and all fund raise for it.

Thank you to Student Works Painting for donating the planning and the labour, and to Dulux for donating all the paint. We are so fortunate to have this gift. And thank you MS Society of Canada, BC & Yukon Divison !

Every year, Student Works Painting paints houses for people who have MS. The owner has a personal connection with MS and gets all of his employees to contribute to the cause. They form teams for the MS Walks in their communities and paint houses. We put our name forward through the MS Society and were thrilled to learn we were chosen.

Student Works Paining donates the planning and the labour, while Dulux donates all the paint. We are so fortunate to have this gift.

We chose to keep the colour scheme much the same but to change them a bit. We will be using Vancouver Heritage colours: Strathcona Red, Harris Cream and Comox Gold.

This morning, 30 young people and their supervisors showed up and started the work.

We are really excited to see the outcome. We are fortunate that the weather looks good for the coming week.

From May of 2010 through to November 2012, I had sporadic support from the public medical system. I did get some support privately and the significant turning point for me was getting a good GP in late January 2012. She helped me with referrals to deal with my chronic sinus infection (which I believe contributed to my MS and may explain why my MS has been stable across all the MRIs I’ve had since the surgery with the great Dr. Javer), as well as helping me to get to the MS Clinic.

Being at UBC hospital in November 2012 was another turning point for me, with doctors who cared and investigated and listened. Since then I’ve been building a support team.

With the recent recurrence of shocks in my mouth, neurologist #5, my MS neurologist, made a referral to Winnipeg to Dr. Kaufmann. I have been in contact with them and they are ready to take me in for a repeat rhizotomy when/if necessary. They are pleased that I’ve been out of pain for this long as this is what they expect as normal. They were also very pleased to hear that the lesions in the pons are smaller.

Knowing that I have Dr. Dvorak and Dr. Kaufmann on alert to see me gives me great assurance. And with my team of chiropractor, naturopath, acupuncturist and my friends at the MS self-help group and the women’s WOW group at GF Strong, I have a solid support network or safety net.

To the two old friends who have stayed with me and my sister Miriam, I thank you.

To my love, Daniel, thank you. I wouldn’t be here now without you.

I’ve had many questions asking me about how I’m doing since my surgery or venoplasty. In general, there are two significant changes.

The first major change is the reduced level of fatigue. I haven’t “hit the wall” once since coming home. Today, I was outside working a bit in the garden (in the rain) with Daniel for the first time in years. This was after a morning at the farmers market.

The other most significant change is warmer hands and feet. Sometimes it surprises me that they’re warm at the end of the day.

The recent good MRI was only one month after the procedure, so it can’t account for that good news. But I’ll take any good news for my health.

Yesterday, after my appointment with Dr. Dvorak, I walked through VGH as I wanted to visit somebody I know who works there. As I walked down one hallway, I recognized a face. It was Resident N, the one who was involved in my care in a different hospital in December 201l.  I stopped her as I wanted her to see me. I told her that my symptoms were real and I was diagnosed with multiple sclerosis. I wish I had had enough presence of mind to remind her that she was the one who almost pulled out my feeding tube when her supervising doctor decided to do a ‘tough love’ approach with me to force me to comply with their plan or they would send me home.

She said she vaguely remembered me but I look a lot different now. I wish I had given her one of my business cards with the URL on it. But if she’s doing a placement at VGH right now, I could write her a letter. Maybe I will.

I wrote about it here if you want the whole sordid story.

I received the report of my last MRI from my GP on March 20. It was good news because there are no new lesions and no lesions getting bigger. I asked my neurologist to take a closer look at the brainstem lesions to see how they were doing. When I met with him on March 27, he told me that they were getting smaller. So this was all good news. That led us both to conclude that the recurring shocks in my mouth are from the healing trigeminal nerve (peripheral nerve) outside of my brain. He offered to put in a referral to the neurosurgeon Dr. Kaufmann in Winnipeg for continued management and perhaps another rhizotomy. I had hoped for a full three years pain free. At least with the lesions getting smaller, I may never have as much pain as I did. There will be residual scarring, so things will never be “normal” unless there is a miracle.

(Right now, I’m on drugs at a relatively low dose and I’m managing well. I have had three full days of no shocks at all, so that makes me very happy.)

There is a new problem and that is edema (swelling) around my upper spine that is compressing on my spinal cord. at C5/C6. It was significant enough of a potentially serious problem that my neurologist wanted to refer me to a spinal specialist. There is evidence of osteoarthritis and bone growth that is interfering with my spinal canal. I had thought that the increased tingling in my hands was from the MS but my MS is stable and I have no lesions that would cause that. So, my neurologist spoke to me on Thursday about referring me to the Spinal Centre at VGH. I told him that the only spinal surgeon whose name I remembered (from my time at GF Strong Rehab Centre) was Dr. Dvorak. My neurologist laughed and said it wasn’t likely I’d ever be able to see the #1 spinal surgeon.

I figured it would take some time before I heard anything. But yesterday, less than a week after the referral, I got a phone call from the doctor who is on call this week and it happened to be Dr. Dvorak. They asked me if I could come in the next day for an early appointment. So, this morning at 7:00 I walked over to VGH for my 7:30 appointment with Dr. Dvorak. The new building, the Blusson Spinal Cord Centre, is right next door to VGH Emergency and is a very nice building.

Dr. Dvorak took my history, asked good questions, and then examined me. We viewed my MRI images together and discussed what he saw. I’m doing pretty well. He did mention that some of my reflexes were “brisk” and there was something he noted about my finger flexion. The left arm numbness that I experienced on June 15, 2010, can be explained by the MRI images. He is the first person to examine me who was skilled enough to detect these subtle changes but I think he is used to looking for those subtleties with spinal cord patients.

I have mild Cervical Spondylotic Myelopathy (Spinal Cord Compression) with effacement of the subarachnoid space. He described the surgical procedure he would use which would be an anterior discectomy and fusion. He described some of the possible risks affecting voice and swallowing. This is all territory I’m very familiar with because of my work as a speech-language pathologist. It was so nice to talk to him and I felt like I was being treated like a knowledgeable peer.

There is no real urgency to my situation and he encouraged me to think a great deal about proceeding with a surgical intervention. When I need an appointment, I’m to call and he’ll be able to see me within a couple of weeks. Waiting lists for surgery are about 4-6 months.

I am now officially his patient. After having been so mismanaged by the public system with my delayed MS diagnosis, I am now seeing the best of the system. I’m a bit flabbergasted — Dvorak is legendary in the spinal community.

I will do what I can to help the situation. My cousin has the same problem and he told me he had success with physiotherapy. And I’ll discuss with my chiropractor as well.

This page highlighting Dr. Dvorak’s positions has a great interview with Fanny Kiefer. He is most impressive and charming. In part two of the interview he describes the osteoarthritic changes in my spine causing me problems.