Exciting News!

Written by on December 4th, 2014 – No Comments

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So…I have been keeping something very exciting under wraps for just over a month now, but I can finally tell you about it. In September, I applied to be a Community Representative for the Canadian MS Society and I received an email indicating that I’d been accepted as the representative for British Columbia at the end of October.

 A Community Representative is someone who is affected by MS-either they live with MS themselves or have a family member who does. In my case, I lived with an MS diagnosis for 5 years before being re-diagnosed with Neuromyelitis Optica (NMO). I have a number of close friends who have MS and I also have members of my family who live with or have lived with MS as well, so my ties to the MS community run deep.
Community Representative assess MS research grant applications to ensure ease of comprehension and relevance to MS and offer valuable insight throughout the review process to ensure that research dollars are spent wisely on projects that will have a significant impact on those affected by MS. Each Community Representative spends significant volunteer hours reviewing, evaluating and recommending studies for funding by the Canadian MS Society.
I have been assigned to the Personnel Awards Review Committee, which is responsible for reviewing Masters, Doctoral and fellowship applications that are involved in both biomedical research and clinical and population health research. This committee is made up of one chair person, ten scientific reviewers (Doctors) and four community representatives.
Over the next month, I will be working hard on the review process and then in mid-January, I will be flying out to Toronto for a meeting to go over in detail each application our committee has reviewed.

I am very honoured to have been selected to participate in this process and to have the opportunity to have an impact on the future of MS research in this way. I am really looking forward to working with my committee (I think it will be an excellent fit!) and am excited to learn new things.

The Canadian MS Society will be posting profiles of each of the Community Representatives on their website soon. If you’d like to learn more about the Canadian MS Society’s research program, you can do so by clicking here.

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 – 1 Comment

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…)

Endorse someonelikeme.ca for the WEGO Health Activist Awards!

Written by on October 28th, 2014 – No Comments

WEGOWe are pleased to announce that the Someone Like Me community has been nominated for the WEGO Health Activist awards this year!

WEGO Health Activist Awards celebrate leaders in online health communities, making a difference in the lives of patients and caregivers. This allows health activists to connect, raise awareness and be recognized for the difference they’ve made in other patients’ lives. Someone Like Me has been nominated for Best Team Performance – This award is for those teams who work better together. Whether it be a group that runs an online chat, a non-profit organization, or a caregiver and patient duo – this award is for a team that takes their activism to new heights because of the assistance from one another.

WE NEED YOUR HELP!

Please endorse Someone Like Me for the awards by visiting the Someone Like Me nominee page and clicking the endorse button. An endorsement is a way to give nominees a visual show of support. The three nominees in each award category with the highest number of endorsements will automatically become finalists. Please share this link in your network to help spread the word!

We appreciate your support and all of your ongoing participation in this community! Thank you!

 

 

Visiting the Neuro-Opthomologist

Written by on October 21st, 2014 – No Comments

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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That constant employment question

Written by on October 14th, 2014 – 2 Comments

workSo I haven’t been blogging in awhile and I must apologize for that. I think partially because I have been slightly putting MS on the back burner. That’s not to say that I’m ignoring it, or not taking care of myself, it’s just that I’ve worked hard to be where I am, and now although I have daily symptoms I’m the best I’ve been for awhile and so am just putting less emphasis on the MS thing and more just trying to live my life. I hope that makes sense!

Well one of my perhaps biggest struggles I have living with MS is with juggling it and employment. As many of you may know I am trained as a teacher, but after 5 years teaching I was let go due to “low numbers”. So once again I was on the job hunt. I was offered a few interviews for fly-in reserve schools up in Northern Ontario, but I figured there was too much risk involved in that if I can’t easily see a doctor or get medication if I need it. I considered supplying but it makes me nervous to not have steady income or benefits for an indefinite period of time.

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My favorite SEASON IS HERE! What’s yours??

Written by on October 7th, 2014 – 7 Comments

DSC01602This topic is as simple as it suggests, what’s your favorite season? When does your body feel the best?

I LOVE FALL !!! Yes I love summer, but unless I’m laying by a pool with quick access to cool my body off – I prefer a temperature where my body doesn’t over heat.
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Win a Free F.U.MS T-Shirt! -Contest now closed -winners to be notified shortly!

Written by on September 30th, 2014 – No Comments

Tell us why this website is important to you? Is there anything that we can do to improve it so that it better meets your needs?

We are giving away free F.U.MS t-shirts donated by Aaron Solowoniuk of the band Billy Talent! Email Someone Like Me at someonelikeme@mssociety.ca to be entered into the draw!

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