Author Archive

UBC NMO Patient Day 2014

Written by on November 25th, 2014 –

nmo dayOn Saturday, November 1st, 2015, I attended the UBC NMO Patient Information Day. There were a number of topics covered, including Patient Experiences, Pediatric NMO, Sexual Health, Pain Symptom Management, Current & Future Disease Modification Therapies for NMO, an update on the NMO Walk/Run and an update from the MS Society.  As you can see, the day was jam packed!

The most exciting thing to come out of the day was that in Canada we are, as of THIS WEEK able to finally join the CIRCLES* Studies. The ability for NMO patients to give blood for the biorepository** has been in place for quite some time in the US, but because Canada has different rules and ethics around a study like this, Canadian NMO patients have had to wait while all the red tape was dealt with. Now, that wait is over- UBC has begun enrolling patients  in the study!

The other really important thing that was discussed was a petition that has been started, urging the provincial government to approve and fund Rituximab*** for NMO patients. Currently, Canadian NMO patients can get compassion coverage of about $3000 towards the cost of the drug, but the remaining balance must come from the patient or via third party insurance. The cost is prohibitive for most patients. In conversation with our local NMO clinic, arrangements are being made to have this petition available online and to extend the request to include that the federal government approve coverage Canada wide.

For those of you who are interested, I did manage to live tweet from the conference and you can review those tweets on Twitter, by searching the hashtag #UBCNMOday . I know there were several people from the NMO community following along and I was pleased to be able to help include them in the day’s events in this way.

The next NMO event coming up will be NMO Patient Day in Los Angeles on March 4th, hosted by the Guthy-Jackson Foundation. I am hoping to be able to go to learn more about what’s being done to help those of us living with this disease. If I am able to attend, I will of course report back and let you know what I learned!

 

*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies. This work is funded by the Guthy-Jackson Charitable Foundation for NMO research.

**Biorepositories are “libraries” where biospecimens (materials taken from the body, such as blood) are stored and made available for scientists to study for clinical or research purposes.

*** An immunosuppressive agent, given intravenously to prevent NMO attacks.

 

Visiting the Neuro-Opthomologist

Written by on October 21st, 2014 –

eyeMany of us living with Multiple Sclerosis and Neuromyelitis Optic (NMO) are likely to experience optic neuritis at some point, making it necessary for us to see a neuro-opthomologist. I thought I would take this opportunity to share what happens during a neuro-opthomology appointment.

Ophthalmology is the branch of medicine that focuses on the anatomy, physiology and diseases of the eye. Most people with visual issues see an opthomologist on a yearly basis. Generally speaking, an opthomologist is an expert in medical and surgical eye problems and will perform standard tests to evaluate the health of your eyes and if needed, prescribe glasses or contact lenses to correct your vision.

Neuro-ophthalmology is the sub-specialty of both neurology and ophthalmology focusing on visual problems that are related to the nervous system, so those of us living with MS or NMO are usually referred to a neuro-opthomologist through our clinic when we develop optic neuritis. A neuro-opthomologist’s skill set is very specific and they have a number of specialized tests allowing them to recognize even subtle changes to the optic nerve so they are better able to diagnose optic neuritis and other neurological conditions that can affect vision.

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#SwimMS

Written by on August 26th, 2014 –

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(Kits Beach, Vancouver, BC, Canada)

So a few months ago, you may have read my post about Taryn Lencoe’s 12 hour solo ocean marathon swim for MS. My husband has known Taryn’s dad since he was a kid (he was my husband’s swim coach) and we had crossed paths at Vancouver Open Water Swim (VOWSA) events, but the day I interviewed Taryn to write the post was the first time we’d met.

Taryn is a beautiful woman-she is warm and funny and has a gentle, thoughtful spirit that belies the fierce competitive streak that lies beneath. When I met her, I just wanted to hug her and by the time we’d finished talking, I did just that. You can’t help but like her instantly.  (more…)

Pharmacists: Important Allies in Health Care

Written by on July 8th, 2014 –

pharmacyLike it or not, most, if not all of us with MS or NMO are on daily medication. Understanding how to use that medication properly to get the optimum benefit from it and avoid the risks of drug interactions is important. That’s where your pharmacist can help.

Recently, I switched pharmacies from one I had been using for 23 years to one closer to home. (I stayed with the same company, just chose a different location.) It took me awhile to make this decision because I had a history with my former pharmacy-the staff all knew me by name and the pharmacist understood my extensive drug allergies. I had always received good service from them.

The reason for the change was that the store was located right in the middle of a very large and drawn out construction project (the extension of our sky train line) and getting in and out of the area was becoming more and more difficult. The other issue was that the pharmacy staff were having their hours cut in some misguided attempted by the powers-that-be to save money, which meant I’d often spend upwards of a half an hour standing in line waiting to pick up or drop off my prescriptions. My time is valuable and between the commute and the wait times, it just got to be too onerous. I finally decided to make the switch. (more…)

In Case Of Emergency

Written by on June 17th, 2014 – 2 Comments

rootsI recently replaced my Medic Alert bracelet. For those of you who aren’t familiar with what that is, it’s a bracelet with a medallion engraved with my emergency medical information on it. It has a serial number that is unique to me on it as well as a toll free number that can be called by medical personnel (Paramedics, ER Doctors, etc.) 24 hours a day, from anywhere in the world. It gives them instant access to important information, if I am unable to communicate it for myself. (more…)

Swim MS

Written by on May 27th, 2014 –

(Taryn Lencoe training in the ocean at Kitsilano Beach in Vancouver, BC.)

Like most people, before Multiple Sclerosis touched the life of someone she loved, Taryn Lencoe knew nothing about the disease. All that changed when Taryn’s cousin was diagnosed with MS 10 years ago when she was in her 30’s. After that, Taryn began to meet more and more people with MS and saw how it affected them. She saw the struggles they were going through and she felt she needed do something to help. She began to think about how she could raise awareness and money for research and support services for the BC & Yukon Division of the Canadian MS Society, using her own unique skills. She bounced ideas off her co-workers and together they came up with the idea of a marathon swim. Why a marathon swim you ask? Well, Taryn grew up swimming. In fact, she swam competitively for 14 years with various clubs, including 2 years for the University of British Columbia Thunderbirds and was also a member of the Canadian National Team. (more…)

Rare Disease Day 2014

Written by on February 24th, 2014 –

What is Rare Disease Day?

Rare Disease Day, which takes place on February 28th, is a day to raise awareness about rare diseases and their impact on patients’ lives.

What is a rare disease?

A rare disease is defined as a condition affecting fewer than 1 in 2000 people. There are more than 7000 diagnosed rare diseases and many more undiagnosed diseases. Nearly three million Canadians have a rare disease. 

In North America, NMO affects 4 in 100,000 people. Currently Canada has 2000 NMO patients. 200 of those NMO patients reside in British Columbia.

How does having a rare disease affect patients?

Financial and administrative barriers deter physicians, researchers and scientists from submitting funding requests for small patient markets. Standardized drug trials require a certain number of subjects for a specified length of time. Due to the small patient market of a rare disease population, there are limited drug discovery initiatives funded by pharmaceutical companies. Therapies may be available but are not distributed or developed further due to the limited demand. This means that the drugs available to a patient are severely limited and often the drugs used to treat their diseases are used “off label”, meaning they were developed for a completely different illness. This can lead to a lack of drug coverage by the Canadian government.

For example, the current drug therapies approved in BC for NMO are two immunosuppressant drugs in pill form, which were developed as anti-rejection drugs for kidney transplant patients. A third drug which is administered as an infusion is being used in the US, but does not currently have coverage in Canada. If the two immunosuppressant drugs in pill form fail for any reason, there is no back up drug for an NMO patient to turn to. My NMO specialist in BC is working hard to change this by lobbying the provincial government for coverage.

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The Gift of Accessibility

Written by on January 21st, 2014 – 3 Comments

Six years ago, when I was having a major NMO attack, which lead me to mistakenly being diagnosed with MS, I lost all the feeling in my hands and arms. At first, I was a mess-I couldn’t do the simple everyday tasks that most people do without thinking-I couldn’t manipulate the buttons and zippers on clothing, put keys into locks, carry things without dropping them and so on. It took months of just muscling my way through it before my brain finally adapted to the new normal and I could manage most of these things again.

One thing I have continued to struggle with is writing. Small motor skills are hard. I can block print for a few minutes, but then my hand starts to hurt and I have to stop. I am hopeless at cursive writing-my brain knows the motions, but it has a hard time getting my hand to sync up, so I end up with loops and swoops where they don’t belong and the whole thing looks like backhand chicken scratch. About the only thing I make an effort to do writing-wise at this point is sign my name on medical documents.

In November, I underwent major surgery to repair a broken wrist. I had a bone removed from the heel of my hand and my arm bone cut in 3, shortened and then bolted back together with 6 screws and a plate. It was (and is) an extremely painful surgery that has completely taken away my ability to write, at least until I regain range of motion. It’s going to take months of physio therapy to do that.

Some time ago, I realized that the only reliable way for me to communicate by written word, or to record information for myself, was to type. My fingers may be numb and clumsy, but for the most part, I can get words down on a page fairly efficiently, using my computer. The one problem with this is that my lap top is too heavy for me to lug around. About a year ago, I discovered that they now make a tiny, wireless keyboard for iPads. The only problem is that at over $700, an iPad mini was not in my budget.

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NMO Day 2013, Vancouver

Written by on November 19th, 2013 –

Thursday, October 17th, 2013 was NMO Patient Information Day here in Vancouver. I was invited to gave a presentation on the Health Mentors Program which went very well. There was alot of positive feedback.

My friend Nancy Reimer talked about being an advocate and organizing the first NMO 5 km walk/run (the first anywhere in the world!) this past May. She did a great job. When she talked about her 9 year old son’s battle with NMO, it brought me to tears. Little kids should not have to deal with life threatening illness!

Dr. Katja Van Hurle, from the Guthy-Jackson Foundation spoke about the work the foundation is doing. It’s easy to see from her energy and enthusiasm that she is such an asset to the foundation. Listening to what she had to say, it was impossible not to feel hopeful and encouraged about the progress the foundation is making. I hope to be able to attend GJF’s NMO Day in San Diego next year to connect with the larger NMO community in person.

The MS Society Lower Mainland Chapter also did a presentation on the support services they offer. Since the Guthy-Jackson Foundation is based in the US, the Canadian MS Society has kindly offered to take NMO patients under their wing and offer all their services to us as well. 

I got a nice surprise when they were showing their slides. There, up at the top left of each one was one of my photographs! This particular photograph has been used on the cover of the Peer Support information pamphlet and now as part of their slide show header! 

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F.U.MS in Vancouver

Written by on November 1st, 2013 –

Billy Talent was here in Vancouver the last two nights, playing concerts at the Commodore. Loribelle and I were invited to come and help Aaron out by manning his F.U.MS booth. We had a great time meeting Aaron’s fans, sharing information about someonelikeme.ca and letting them know about Aaron’s new “Ask Aaron” section in the forum, as well as selling t-shirts to help raise funds for the Canadian MS Society. We did a lot of tweeting and even gave away a signed copy of their latest album to one lucky couple who saw the tweet to be the first to visit the F.U.MS booth to win it.

Last night Aaron came to meet Loribelle, her husband and I before the doors opened. It was nice to finally put a face to a name, after all this time. We had the chance to chat and I gave Aaron an NMO awareness bracelet, which he immediately put on. He very kindly asked us which of the band’s t-shirts we would like to have and then took them and had them signed by the entire band.

Loribelle and I had also never met before, so doing this volunteer gig was the first time we’ve crossed paths. It was great hanging out and getting to know her and I am sure we’ll get together the next time she’s in town.

THANK YOU Aaron for the opportunity to help out. Have a great time on the European leg of your tour!