Archive for November, 2014

UBC NMO Patient Day 2014

Written by on November 25th, 2014 – No Comments

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.


1 year anniversary

Written by on November 18th, 2014 – No Comments

It’s November already, wow! How time flies. Here in Edmonton, we’ve been enjoying a beautiful fall, with temperatures still in the double digits (on the plus side). That being said, we know winter is almost here, and I think I speak for all of us when I say we are dreading it!

November is an important month for me, though. This November marks 1 year that I have been relapse free. I really can’t believe it sometimes. Going from relapses every 6-8 weeks to a whole year without a single problem feels amazing. I have a life again, and it’s pretty sweet. Thank you, Gilenya!

The past few months have been a blur of changes. My boyfriend and I bought a house and moved in this past June. Then we brought home 2 black lab/border collie cross puppies shortly after. These two little dogs (Bo and Ruby) have been so good for me and my MS journey, and I just love them so much. They definitely keep me active with daily trips to the dog park where we go for hour long walks – and I can actually keep up. My dream for my pups is to volunteer with them as therapy dogs, specifically with MS patients, although I’d happily take them to nursing homes, children’s hospitals, or wherever they are needed. They’re a little young for it now (they are 6 months old) but we’re working with them every day to get them trained for when they are older.

Do any of you have pets that make a difference in your life and/or your MS journey? Please share in the comments, I’d love to hear about them!

Getting back to exercise

Written by on November 11th, 2014 – 2 Comments

So I always make an effort to exercise, but I find that I’m much more motivated to exercise and likely to stick with it if I sign up for a fitness class.  Since my last major relapse I did a class for people with a variety of medical conditions (read, they were all 40+ years my senior!) but I’m getting stronger, so this fall I signed up for group fitness at my local community center.  Basically it’s a variety of different classes and times each day that you can choose from. The classes are for adults, but largely the population that goes to them are seniors.  For the most part, it’s pretty good.  The instructors are great.  There are several different ones and I’ve told many of them about my MS and just explained that my goal is to increase strength, raise heart rate and generally get a work out, but provided I’m not hurting myself.  I might not be able to do everything as they suggest but I’m okay with that. (more…)

Decision Making with MS

Written by on November 4th, 2014 – No Comments

How many times have you had that feeling in your gut that it wasn’t right, but everyone around you was telling you it was the right thing to do. A year or six months passes by, and you knew that you should have gone with your gut. Living with MS is an emotional roller coaster, and you rely heavily on your support system. However, no one knows you better than yourself. MS does make your decision making ability difficult at times because of the fogginess that experienced with the disease. Making a decision based on emotions can be one of the worst things that you can do. For many youth with MS, the decisions that you make now can really have an effect on you as an adult…your career, the city you live in, and your friends. (more…)