Just a quick update for those people who read my blog to find out how I’m doing.

I continue to have problems with digesting food. I am losing weight again. I suspect this is more of a problem with my small intestine rather than the large intestine. I have been taking high doses of Nystatin to try to eliminate the candida infection in my intestines.

I had a severe pain in the right side of my face four nights ago. I increased the dose of nortriptyline to help with that. I have been working with a few new professionals to try to get things back on track but I am starting to get discouraged.

My left foot and leg are getting weaker. I continue to have difficulty sleeping. If I were stronger and digesting food, I think I would be doing better but I’m in bad shape.

I have been able to eat more and maintain a stable weight at about 107 lbs. Although I’ve been able to eat more it has translated into more energy to walk but not enough to gain weight yet. I did a test for gastroparesis that came back “normal” but I am definitely much slower than I used to be. As they do not give numbers or data in the report, I have to assume that the bell curve for normal is rather broad. And as I was noticing improvement about a month ago, it is more likely we would have picked up the something below normal in July.

Regardless, I need to work on eating more if I’m to get any type of life back. My mood has been affected significantly and I am hopeful I can improve my sleep, the ongoing case of thrush (mild now) and get the feeling back on the left side of my face. Bowel movements have been more consistent but still far from normal.

I received a copy of a note that the neurologist #5 wrote to some doctors about my current condition where he states that gastroparesis from MS is rare and therefore unlikely the cause of my current condition. (I gave up communicating with him on July 6 as it was leading nowhere with him offering me a referral to a gastroenterologist or a psychiatrist.) He claims to have discussed this issue with me in his report when he did not. I would have argued with him — and reminded him of the lesion in my left medulla — and no doubt would have remembered that! He did all of this without attempting to contact me which really disappoints me. He is a decent man but there were others who acted by breaching confidence and interfering with my personal decisions.

Apparently, in neurologist #5’s words, I am “not severely affected by the MS.” Well, I would gladly give up the use of my legs to NOT have the trigeminal neuralgia and and digestive problems that I do have. Who has that choice with an unpredictable neurodegenerative disease?

Rare or not, I have a lesion in the part of the brain stem where the vagus nerve arises. I’m not sure how exactly one identifies the exact location of a problem lesion in relation to its cranial nerve. They seem to be able to do it easily with lesions in the pons (trigeminal nerve) but not as easily with lesions in the medulla.

And Trigeminal Neuralgia from MS is rare too.

I haven’t had a decent bowel movement since June 28.

I self-referred to the palliative team and they have been mostly wonderful.

Not sure what the next steps are but I feel like I am running out of options. Fortunately, I am able to eat a bit more than I was able to a few weeks ago, so the weight loss has stabilized somewhat but I seem to be quite a ways from putting any of it back on.

Doctors are always told “When you hear hoofbeats, think of horses not zebras!”

Well, I’ve been a zebra ever since the start of my problems and continue to be one, even to the old neurologist who is the “expert”. Their default position is always psychiatry even though I have MRI evidence of the cause of my zebraness.

My sister Miriam was visiting this week from New York. She snapped this photo of me and Daniel yesterday. I’m 108 lbs and still suffering from the gastroparesis where food just sits in my stomach and doesn’t digest quickly.

I sleep on a wedge so I don’t breathe in or taste my stomach contents at night and I think that gravity helps with clearing my stomach overnight.

Three quarters of my face is numb, I move my bowels every 3-4 days in small amounts. I’ve lost most of the ability to taste food.

It’s difficult literally starving to death and I’m fortunate that I have a palliative care team supporting me. The worst part about this wasting away is that it’s so slow! Fortunately, I’ve been able to continue going to the bathroom on my own and walk short distances.

I guess it’s one day at a time for now.

1. Camp Latona

2. Little Flower Academy – high school

3. Solo trip to Europe

4. Purdue University — SLP study, work as a staff resident, trips to Chicago, Toronto, and New Orleans

5. Marshfield Clinic — clinical fellowship in Speech-Language Pathology

6. SLP work at GF Strong Rehab Centre — community outreach service, outpatient program, special, memorable clients

7. Volunteer at Vancouver Writers Festival — picking up writers at the airport, including Rohinton Mistry (his first trip to Vancouver and I showed him around Granville Island on the way to his hotel) and hosting a couple of memorable events, including ones with Alberta Manguel, Michael Moore, Sherman Alexie and many others

8. Went to a Harvard Continuing Education week in Boston on “The Neurology of Behavior” hosted by Antonio Damasio . Also managed to squeeze in a Vancouver Canucks vs Boston Bruins game at the old Boston Garden. Pavel Bure scored the overtime winning goal 4-3. On that same trip, I took the train up to Stamford, Connecticut to see very good old friends (Martha and Phil) and had a personalized tour of the highlights of New York City that included an elevator ride to the top of one of the World Trade Center towers.

9. Travel to visit good friend in Vermont and drive through several states and see the fall colours in Quebec, New Hampshire and Maine as well as Vermont

10. Finding my biological family in 1997 and a new cousin in 2014.

11. Daniel and the summer of 1998

12. Buying my dream house in 1999

13. Many trips to Merville, Vancouver Island and Saturna Island, thanks to generous friends

14. Road trip to Yosemite National Park via Washington, Oregon and California coasts in 2000

15. Trip to Helsinki, St. Petersburg (Russia) and the Baltics (Lithuania, Latvia, Estonia) in 2001

16. Trips to Haida Gwaii — first one solo in 1996 and second one with Daniel in 2002

17. Winning media award from national SLP organization and going to St. John’s Newfoundland to receive the award in 2003.

18. Founding of the BC Aphasia Centre (2000) with lengthy article by Daphne Bramham in the Vancouver Sun (2003), Volunteer Vancouver Award nomination and CBC National Radio interview with Shelagh Rogers, June 24, 2004 ( see media page )

19. Provincial jobs — great opportunity to learn new skills and learn more about the diversity of British Columbia with two contract positions: Coordinator for “Strengthening Families and Youth” with Canadian Mental Health Association, BC Division, and Provincial Consultant for Pediatric Therapists, contract through the Ministry for Children and Youth. The website I started is still there!

20. My dad’s death — I wrote a special letter to my dad on his 75th birthday to make sure that he knew how important he was to me in my life. When he declined suddenly with aggressive cancer two years later, I was glad that I had done that as we had little time for quality conversation. A talented friend help me make a beautiful funeral card for him.

21. Politics – I enjoyed getting involved in federal politics and went to my first national convention in late 2006. Being involved with the election of our local MP last year was also a life highlight.

22. I got involved with the Women’s Campaign School with the Canadian Women Voters Congress . I was president from 2008 to 2011. I met a lot of interesting people and learned a lot in that time.

23. Florida and astronauts. We were invited to the launch of STS-125 by a Purdue colleague, Drew Feustel, in 2009. It was a great and memorable experience. The year before I had a chance to meet Marc Garneau , Canadian astronaut through politics, (I found myself in a foyer alone with him and told him about Drew Feustel whom he referred to as “the half-Canadian”); John Herrington , the first American Indigenous astronaut, through a friend who was working on a children’s show through APTN. And then we got to meet Drew’s crewmate and space walk partner; John Grunsfeld , when he was giving a lecture at UBC about repairing Hubble and his experiences as an astronaut. Drew’s wife Indi let him know that we were attending the lecture so it made it easy to approach and chat with him before the talk.

24. Being present for my mother’s death in 2010 and organizing a funeral with her ahead of time and having it work out so beautifully.

25. Being well enough to travel again with Daniel, with a trip to Washington, DC, Long Island (to see my sister) and NYC.

26. Being well enough to enjoy life — good food, riding my bike, seeing friends again after changing my diet and becoming inspired and a follower of Dr. Terry Wahls and having the chance to meet her !

by Daniel Ouellet (husband and guest blogger)

Quite a while ago, Jennifer asked me if I would write a guest blog post, and I accepted eagerly although I didn’t know what to write about at the time. I let the idea simmer for a bit. I wanted in some way to portray my perspective on her story, or my experience as a witness to her ordeal and pain. Then it dawned on me that what many people seem to marvel at is that I stayed at her side through this hell, so I decided to write about why I stayed.

Chronic illness is a deal-breaker in relationships, and stories abound about it. A friend openly told me that he would have bailed out if he were in my shoes. In truth though, I never even seriously thought about leaving, and I would venture to say that there are also countless examples of committed partners who stand by their mate. I’ve met a few, so I know I’m not alone.

You might think that acceptance of your lot in life is part of it, but that to me sounds like quiet desperation. Maybe it does carry you through sometimes, but it takes a lot more than that to endure years of set backs, frustration, and tears. I did ask myself at times “What do I need to learn from this? Why should it be my fate to have to live through this? What did I do to deserve this?” You know, the Job questions.

I flipped the table too, and asked myself how I would feel if I became ill and my wife left me as a result. The answer is “shitty”, of course, but “Do unto others as you would have them do unto you” is still far easier said than done. That said, I’m one of those who have a conscience that won’t let them get away with stuff, so for me the Golden Rule applies. Besides, Jennifer didn’t ask for this any more than I did, and her suffering has been far worse than mine.

But at the bottom of it, I stayed, quite simply, because it is the only loving thing to do. It takes a good dose of selflessness to stay, and it has tested my patience and my capacity to love countless times. I should add that I can’t judge those who leave, because I can’t say that I would have stayed under all circumstances. Every situation is unique. What made a huge difference and tipped the scale for me is the tenacity and courage that Jennifer has manifested throughout this ordeal.

And in the end, despite all the arguments, tears, and emotional pain, I have absolutely no regrets about staying. It was the right thing to do.  It deepened our relationship, it taught Jennifer about the true nature of love and perhaps helped her realize that she is worthy of the deepest love, and it taught me a great deal about my own humanity.

When I first started the idea of writing about great life experiences, I was not feeling well and figured I’d never feel great again as MS is a terrible disease. I wanted to leave some evidence that I was HERE and I LIVED a life. The best I could hope for was not to get worse and that’s why I started the drug treatment. Little did I know that some of the people and ideas I encountered along the way would provide me with much more hope and some actual healing. I got to the point where I thought I might be one of the lucky ones who figured out how to stop attacks.

Now that I am suffering another brain stem attack so similar in many ways to the one in 2011, I realize I was wrong. Did I do something wrong? Exposure to gluten or dairy? Stress? Surgeries? Exposure to toxins? Re-stenosis of my jugular veins? I was tolerating the drug well but the only things that really made a difference to how I felt were the TVAM/CCSVI procedure in California in February 2014 , and the change in my diet following the example of Dr. Terry Wahls. After the TVAM/CCSVI, my energy improved, my blood pressure and pulse normalized, my hands and feet got warmer. I tolerated heat better and actually began to sweat.  With changes in my diet, I had quite a remarkable two years, ate food and enjoyed so many things in my life again that I thought were long gone, including exercise, swimming, riding my bike and hosting dinner parties with friends! I even had a glass of wine once or twice on very special occasions. Yet these times were interspersed with episodes of recurring trigeminal neuralgia, pain, stress and trips to Winnipeg for surgery.

Last summer, I recall saying to Daniel that it almost felt like the MS was gone. I was doing a lot of fun and interesting things. I felt mentally sharp. My feet felt normal and the feeling was coming back to my face as the rhizotomy healed. The only thing that persisted was a bit of tingling in my hands from the C5-6 spinal stenosis. But it wasn’t getting worse and actually had shown some signs of improvement with the annual MS MRI scans, plus I was seeing my chiropractor regularly and physiotherapist occasionally.

As I may not have time to go through all of the great experiences and scan photos, I’ll list them in the next post.

I have been losing a lot of weight again and it looks like in many ways we’re right back to where I was in late 2011. This time we know what is causing it and I have an official MS diagnosis. When I eat, food sits in my stomach for hours (gastroparesis) and I taste it regularly. I can’t eat enough to sustain my weight and I’m getting weaker each day.

The Vagus Nerve and the Digestive System

Beginning in the brain, the vagus nerve travels down alongside the esophagus to the stomach and other gastrointestinal organs and is primarily responsible for autonomic regulation involved in heart, lung and gastrointestinal function. The vagus nerve controls much of the activity of the stomach, intestine and pancreas and plays a role in food processing, including:

– contractions of the stomach to break food into smaller particles
– release of gastric acid required for food processing
– emptying of the stomach contents into the small intestine
– secretion of digestive pancreatic enzymes that enable absorption of calories
– controlling sensations of hunger, satisfaction and fullness.

I am not interested in tube feeds this time, nor am I interested in experiencing trigeminal neuralgia on the other side of my face. I have decided to let nature take its course without life-saving medical interventions. I have chosen to engage with the local palliative care team. I am seeking comfort and pain relief, if necessary. As the oral route for pain medications is compromised, I will need some help.

Through all of this, Daniel has remained steadfast and loving. He is making me beautiful soups that should be easy to digest but they’re still a challenge for me. At least I am getting some nutrients into my body while we plan next steps.

Last week I found the most interesting and informative blog written by a local young woman with gastroparesis who is keeping herself alive with TPN. She is brave, smart, and a great writer. She expresses much of what I am feeling in some of the posts.

People have been suggesting I consider something like this to buy myself some time . . . spend some time reading it and you may understand why it’s not an option for me . And I ask myself, buy some time . . . for what? More misery? More suffering?

What is also interesting to me is that if any doctors I saw (besides my two friends — radiologist in Portland and pediatrician here in Vancouver) had actually LISTENED to me, we would have arrived at the recognition of the symptoms of gastroparesis and the possibility of MS a lot sooner than we did. This problem happened for a long time in 2011 along with facial pain. And the brain stem lesions in the MRI (two or more in the right pons, large lesion left medulla) fully explain all the symptoms.

Interesting to see that in 2006, an article in PubMed said that upper GI problems are rarely reported in MS. Well, I guess this confirms that I continue to be rare and unusual. Gee, I hope some keen neurology student can learn something from all the stuff I’ve put up here! It will probably take the profession of neurology another 20 years before they even ask questions related to GI problems. I’ve been asked about swallowing a couple of times. And I’ve been asked about constipation a total of once!

In 1998, I was 38 years old, working in a job I enjoyed, and in the process of developing a business. But there was one thing missing and that was somebody to share my life with. A friend in Minneapolis had told me about a book I should read by Harville Hendrix, “Getting the Love You Want.” It helped me think about the significance of a primary relationship and the commitment and honesty required for a successful one.

I decided to take a course called “I’m Ready for a Relationship” at the local community centre. While taking the course, one of the challenges was to get comfortable with rejection as that meant you could move on and focus on other people who might not reject you. And the instructor asked us to write a long list of all the things we were looking for in an ideal mate, shoot for 100% and settle for 90%. Yes, it’s true — nobody is perfect!

My business partner had started corresponding with a man in Germany and it inspired me to try an online matching service. Now bear in mind this was May of 1998, so not many people were doing this. I signed up for one that gave me three weeks for free and sent messages to a few of the men who had similar interests.

One of these men wrote smart and thoughtful emails and during the three weeks of correspondence we moved on to our personal emails and arranged to meet. I learned that he was smart (PhD in Mechanical Engingeering), was an adjunct professor at UBC, was an accomplished researcher who published and had international recognition in his field of mechanical pulping. He had a business trip planned back east and took some vacation while there. And during that time we corresponded a lot. He was well aware of the Harville Hendrix book and was pleased that I mentioned it. So, before we let too much time go by and get lost is the fantasy of perfection, we arranged to meet at a coffee shop right after he returned from his trip.

On June 1, 1998, we met and began the glorious process of falling in love. After we had known each other for a few weeks, I showed him the list of things I was looking for in a mate. He read the loooooong list, handed it back to me, then said, “It sounds like me.” That was what amazed me too. Over the years, I have come to learn that he has many more pluses that I hadn’t even considered — like being a great cook! And an amazing handyman!

The weather that summer was glorious. I can barely remember a rainy day from June through September. And we did so many things that were so much fun.

We swam at the beach. We went to the Vancouver Jazz Festival. We went on a camping trip on Vancouver Island, visited my friends in Courtenay, then went all the way to the tip of Vancouver Island to Cape Scott. We brought back fresh crab to share with a friend of his visiting from Montreal.

That was also the summer we hiked “ Black Tusk “, all in one day. We went with my brother, and it was the hottest day of that summer. We were so hot that we swam in the ice cold glacier fed water of Garibaldi Lake.

We rode our bikes, we enjoyed each others’ company. We went to movies and even met each others’ families. My mom, Maureen, quickly fell in love with him too!

I am forever grateful that I had the experience of falling in love and spending my life with an extraordinary human being.

I love you Daniel.