Wednesday, 21 January 2015

Fundraising

Christmas is done.  We rang in the New Year.  Time to focus on fundraising for the MS Walk. 

Here are 5 excellent reasons to donate or join my team:


1.  Canada has the highest rate of MS in the world.

2.  Over 100,000 Canadians live with this disease.

3.  The MS Society of Canada does A LOT to help people with MS.  In 2013, they funded $8 million in Canadian MS research, $9 million in programs and services for people affected by MS, $6 million in public education and awareness, $2 million in government and community relations and $4 million in volunteer and chapter development.

4.  There is no cure for MS.

5.  Your support will have a direct impact on my life, and I'll be forever thankful.

Click here to see my fundraising page.

Team Making Lemonade starting the 2014 walk.

Saturday, 10 January 2015

Saying goodbye

This week we said goodbye to our beloved Nanny after her long battle with Alzheimer's disease.

This was a day we knew was coming.  She was 90, and had been in the late stage of the disease for years.

Despite that, I am so sad. 

But I also want to capture a few memories of her, right now, in the middle of all this...

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She loved to cook.  And hosted a mean dinner party. 

Her pickled onions were legendary.

She always wore the fanciest high heels. 

And had the best lipstick (and would literally stop traffic to re-apply it - which makes me smile).

She loved the musical Cats and the Nutcracker ballet.

When I was sick as a kid, she'd drive all over the city to bring me fresh Matzo ball soup.

She let us jump on the beds and her fancy furniture (don't tell Jack!).

She spoiled us rotten.

She could play anything on the piano.

She loved ice-cream.

Even when she was fighting early Alzheimer's, she still stood up and gave a speech at my wedding.

When she lost her ability to speak, and could no longer recognize us, she'd still smile and wink.


Meeting Jack for the first time, 2007.


As our very involved Grandmother, she also became a friend, confidant, and mentor.

She loved her family like nothing else.  Her incredible dedication to us all was amazing.   I am truly grateful to have had her in my life.

We love and miss you, Nanny.

Monday, 29 December 2014

A schmaltzy Christmas

The presents have been opened, lots of wine has been consumed.  The half-dead tree dragged to the curb.

The frenzy of Christmas seems to be petering out.

Despite the various forms of flu currently festering, I am finding myself counting my blessings.  All of my swallowing test results are in - and they are all normal.  There are no anatomical or functional problems with my larynx or esophagus.  I can still choose to have an endoscopy done in March to look for further issues.  But for the most part - my swallowing is back to normal.  I don't have to watch what I eat, or when I eat.  It's so nice.  We just assume it was a month long relapse of sorts.  All of my blood work just in case also came back excellent, which was a huge relief. 

We have had an abundance of family time this Christmas, with family visiting from the UK.  It's so nice to watch the boys have some extra people here to love, play with, fight over - and of course - to help babysit!

My mushy side can come out during the holidays.  I think I love these guys just a teensy bit more right now.  Maybe it's their Christmas awe, maybe it's because we can sleep in and there's no homework to get done.  Or maybe it's just because I love watching them love each other.  With no fighting. Or kicking.  (Santa's still watching...)





And look - YES, they are sleeping together.  And YES - they are holding hands!

I hope you and yours had a magical Christmas too!


Tuesday, 9 December 2014

The swallowing saga

It's been a month of the delights of dysphagia. 

I've managed to do my barium swallow and fluoroscopy.  Which were a treat.  Nothing like downing 3 cups of unflavoured barium in record time, to be put on a topsy-turvy table, tipped back and forth, all while being poked by a radiologist "to get it all moving."  I will get those results this week.

And today, in record time, I had a consult with a gastroenterologist.  Another appointment with a 4-year-old in tow.  Considering this is my new speciality, I was wiser this time.  We stole his brother's 3DS, and it kept him mesmerized and quiet the entire time! Although this doctor is also suspecting MS activity as the cause of the dysphagia, he still wants to do an endoscopy to see if there is any esophageal narrowing and to take biopsies (once you're in there you might as well just do everything...).  That doesn't happen for a few months.

So many appointments, soooo little time!  Only about 5 more to go before the Holidays.  And one final post-Gilenya check.

Squeeze in a haircut, and call it a day...

Monday, 1 December 2014

2015 MS Walk!

I'm pretty sure I was the first to register (again).

But this is my thing.  The thing that spurs me into action each year, working hard to raise money for the MS Society of Canada.

It makes living with MS just a little easier; it makes me have hope.

The walk is later this year - in May, so the weather should be perfect.  And it has a new location in Vancouver, at the Plaza of Nations.

My team - "Making Lemonade" - has raised over $14,000 from the past two walks!  Thank you to all the amazing people who have helped to make this happen.

Let's try and continue the success this year.  If you'd like to join the team (please do!) or donate, here's is the link to my page:

http://mssoc.convio.net/site/TR/Walk/BCandYukonDivision?px=1643137&pg=personal&fr_id=4221&s_locale=en_CA


Thursday, 20 November 2014

MS fast fact - Dysphagia

Dysphagia:  Difficulty swallowing.  Usually indicative of a problem with the mechanisms controlling the movement of the mouth, throat, and/or esophagus.  It is common in people with MS, can become a permanent manifestation of the disease, or be associated with a temporary relapse.

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It's been 2 weeks now, and after a choking-during-dinner episode, I thought I just had food stuck in my throat.  It would pass in a couple days, I told myself.

But it hasn't, and it's getting worse. 

It's a odd sensation.  I can swallow, but I can't.  Like my esophagus just won't allow food to move down it easily. 

There could very well be something stuck in there, but there also might not.  And these sensations I am feeling could be right-on-par nervous system damage.

Today I finally got the ball rolling and now have a series of appointments.

I start with a fluoroscopy next week, to watch the mechanics of how I actually swallow (on x-ray, which is actually pretty cool).  I am waiting for an endoscopy to take a physical look down my esophagus as well. 

But there's a wait for that.  So if you, or anyone you know, is an ENT specialist, I am your new best friend.  I pay in wine and (sometimes) useful parenting tips... Ha!

It's a frustrating process.  Something is definitely not right.  But is it my MS? It's highly likely, but who knows.

I'm kinda just hoping I wake up tomorrow and feel normal.

Not too much to ask, right?

Sunday, 16 November 2014

What's an Ambassador?


I was asked to be an MS Ambassador way back in May.

I like to think it was because of the blog, but really, I think it was all that yellow.  Two years of walks, and lots of lemons, to boot.

Not easy to ignore.

I was able to unofficially get involved over the past few years with TV spots, local newspaper interviews, the Action On MS campaign, and involvement with the International MS Federation.

But this weekend it finally came a little closer to home.  Along with my new MS "bible" this was my official training.  It was an intensive time full of presentations, people, mingling, chatting, and learning.



And lots of coffee.  Plus a long nap.

So - what exactly do I do?  It varies, and depends on what I am needed for.  It can mean speaking to groups of people, or at events, to people with MS or without, speaking to the media or to government, and to be "a face" for the disease.

I have known the staff at the MS Society of BC since my diagnosis, and cannot say enough about them.  But this was my first chance to meet Dr. Karen Lee, VP of Research for the MS Society of Canada.  I follow her through social media, so feel fairly connected to the research and development in MS.

Listening to her speak about the actual stats on MS; the stats about research dollars, how they are allocated, and how they sometimes need to be spread thin, was something new for me.

The piece that hit me perhaps the hardest - discussing the prevalence of depression and mental health issues in people with MS.

Then comparing these people to those with ALS.

Two similar, yet different neurodegenerative diseases.

ALS has been in the media a lot recently with the ice bucket challenge.  It is a disease that is typically radically more progressive than MS.  It becomes more serious, more quickly.  It is a terrifying disease.

However, as I learned, the rate of suicide is much higher in people with MS than with ALS.  Simply because, unlike ALS (or, another example that was given to compare patient populations, cancer), absolutely no prognosis can be given to the patient.  There are no estimates of when things will happen, or how bad things will get.  There is no certainty at all. 

I completely get this statistic, and the logic behind it, but was still shocked by it.

(So when I try and hit you all up for MS Walk donations in a few months, let's try and remember the other sides of MS - like mental health, and the great need for better support.)

It was a very worthwhile weekend for me.  And I am so, so grateful to have this opportunity.