Show some love!

Today is World MS Day.

If you know someone with MS, go give them a hug, write them an email, or make a call.  Let them know you are thinking of them today.

It's all about having love and support.

To all those I know with MS - thank you for advocating, sharing your stories, and helping me navigate through this.

And to those who support me - the hugest thank you possible.

This medication thing...

We had 6 months to think, assess, and figure out the next course of treatment to consider.

My brain MRI results indicated no change, but my spinal symptoms have been brewing, and have become daily, and worsening, reminders that things are not okay.

Six months ago, the last time I saw my Neurologist, the only treatment option to progress to was Gilenya, an oral medication.  An upgrade from my daily injections, and with proven potency, but with nasty side effects involving the heart and eyes. 

I have literally spent 6 months researching, thinking, and trying to make some sort of coherent decision.  I was this close to just accepting Gilenya as my fate.

After my physical neurological exam today, I was told even that is no longer normal.  I am now exhibiting some classic reflex and sensation signs. 

The Hoffman sign occurs when the middle finger is bent back and flicked (while I don't look), and the thumb and index finger jerk instead of remaining still.   In MS, when there is weakness and spasticity in a limb, the reflexes will be increased and a pathological reflex will be present.  If there is ataxia in a limb, the reflexes may be decreased. Thus, the relative presence or absence of reflexes serve as confirmatory signs to document a lesion in the spinal cord, brain stem-cerebellum, or cerebrum.  My reflexes were wild and uncontrolled.  Not normal at all. 

I also couldn't balance on two feet with my eyes closed.  I fall to the left.  And I couldn't perform the "drunk walk" (walk in a straight line, heel to toe, heel to toe) without needing assistance.

Add that to the never-changing spinal symptoms, and it was decided to put in an application to see if my extended health plan will cover the cost of Lemtrada (alemtuzumab). 

Lemtrada is an IV infusion drug administered only two times.  When starting it is administered daily for 5 days, then one year later for 3 days.  Then, potentially, nothing ever again.

Doesn't that sound nice?

But, as with all potent drugs, come the side effects.  Lemtrada is essentially a drug usually used for Leukemia, but adapted for MS.  It is an immune "reboot" so to speak.  It kills off certain parts of your immune system, and it is left to readapt, hopefully without the auto-immune disease properties of MS. 

The side effects are many.  Life altering ITP (lowered platelets, meaning the blood cannot clot), kidney disease, and thyroid disorders.

And monthly blood and urine tests for FOUR YEARS after the treatment stops.  Essentially making that 5 years.  Holy smokes.

There is no messing around with Lemtrada, but when it works, it works.  People report feeling "normal" again. 

It literally has just been approved by Health Canada, and only 36 people in BC have been treated with Lemtrada in clinical trials (more since it's Health Canada approval)

But, you know, for some reason, I am not feeling overwhelmed or scared.  For the first time in the almost-2-years since my diagnosis, I am seeing the massive advances into medication research, and I feel genuine hope.

First step:  the paperwork from my Neurologist to see if the treatment will be covered.  If yes - I'll most likely do it.  If not:  we reassess (again).  There are still months to go in this process.

And we wait, with bated breath.

Remembering

It's been 12 years since the loss of one of the most important people in my life.

Today marks the anniversary of his passing.

Of course there are still tears, still huge outpourings of memories.  But, the years are easier, and this day is easier.  Life does go on.

Each year I try to do something to remember him.  Sometimes I go to the tree planted for him, and simply sit and remember.  One year, my sister Erin and I went out an enjoyed a nice glass of his favourite red wine in his honour.  Sometimes I wear his old lapel pin.

Today is about some of Robin's favourite things.  In his honour - I will blast Jeff Buckley as loud as I can, I will eat a huge Oh Henry bar, and yes, I will enjoy some wine.  Most of all, though - I will smile through some happy tears, and be so grateful I had him in my life.

The reflections Erin and I wrote for his memorial are perhaps more poignant all these years later:

"...and the things we miss now are closer than we think.  They are inside of us.  And when we do something kind, laugh at a corny line, read a good book, or open a bottle of red wine - we are continuing him."

We love you, Robin,  And still think about you every day.

World MS Day

World MS Day is on May 28th.

The Multiple Sclerosis International Federation, based in London, which documents, supports, and brings awareness to MS world wide, has chosen me to be part of their "One day" campaign to promote MS initiatives.

All of the MS ambassadors (which seems to be the coined term) had to choose our one wish for our lives with MS, plus discuss this year's theme of "access," and how it affects our lives personally.

It will be very interesting to see the global differences in terms of access to healthcare, medication, and treatment.  I am very, very aware of how lucky I am to live in Canada.

The "One day" pre-launch website has gone live, and if you wait for all 21 people to be featured, you can see my "One day" wish.  On May 28th, the full site will be unveiled and all the MS ambassadors from around the world will be featured with their wishes, plus issues surrounding MS and access.

Click here to see the World MS Day website.

It is such an honour to be included as a "MS One Day" representative from Canada!

 

 

MRI update

I finally received a copy of my brain MRI from the Radiology department.  Here's their (a little too concise) summary:

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Type:  MRI Brain

Indication:  Relapsing Remitting MS on Copaxone.  Still having relapses.

Comparison:  May 2013

Findings:  Several juxtacortical, deep white matter, and periventricular hyperintensities (lesions) are noted consistent with known diagnosis of multiple sclerosis.  No infratentorial disease identified.  No new lesions seen.  Brain volume is normal for age.

Impression:  Stable diseased.

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That's me - stable diseased.

I am happy there are no new brain lesions.

But this was expected.  My brain MRIs have always been stable, whereas changes in imaging and increases in symptoms are from my large spinal cord lesion.

It is odd that I never have both brain and spinal cord imaging done at the same time, to assess physical symptoms and medication effectiveness concurrently.  I suppose it is the schedule I stumbled upon during the diagnostic process, and now it's just stuck.

And as the boys and I returned from school, plus a long, sweaty playground visit, my Neurologist called.  (I hope he didn't hear the rowdy screams in the background...).  Even though there was nothing of note to mention from this MRI, I was impressed to receive a live call from him.  No assistant staff, no residents, no leaving message after message for a nurse.  He wanted to go over my MRI and see how I was doing. 

It's nice to feel like a human patient.

My appointment with him is in 10 days, so then we chat about a medication switch - and whether that possibility still exists.

MS Moms

Before an MS diagnosis, many women just assume the exhaustion, brain fog, and clumsiness is just part of being a Mom.  Mommy-brain.

It goes on for years. 

Then starts to include other symptoms.

And usually gets bad enough that a diagnosis is made.

I find it so ironic that the scars of Motherhood overlap so greatly with those of MS.  Yet, with added irony - one of the largest groups of people with MS are young Mothers.  They are the "typical" person with MS.

And I think it's harder for Moms to focus on their own health.  Their own well-being, and daily happiness.  Simply put - it's not easy to overlook those small faces of yours; to not put them first.  I think all Moms struggle with this, living with a disease or not.

On this Mother's day weekend, I am going to appreciate all the Moms I know.  With MS.  Without.  Those with a smile on their face, and those fighting a battle they didn't ever think they could conquer.

If you are on Twitter, let's get some action for #MSMoms.

And check around your neighbourhood to support the MS Society's Carnation Campaign.  I love that it happens on Mother's Day weekend.