Cuppa' Joe?

I recently came upon a little tidbit of information that linked caffeine to the prevention of MS so, I decided to look into it...

The effects of caffeine on MS have only been studied using mice so far.  Researchers gave our rodent friends the equivalent of 6-8 cups of coffee per day and found that this prevented them from developing the animal-model version of MS.  Poor things; I can only imagine their little running-wheels going 24/7 during the study!

Anyway, I'm going to hit you with a bit of science here to explain why caffeine has been shown to ward off MS. 

There are four building-block molecules that make up our DNA, one of which is called adenosine.  Adenosine normally latches on, or binds to the adenosine-receptors of our cells.  After this happens, T-cells/immune cells are activated and cross through the blood-brain barrier into our central nervous systems (brain & spinal cord).  The T-cells then begin wreacking havoc and causing lesions & inflammation, otherwise known as Multiple Sclerosis.  Simple right?!  ha ha

Well, caffeine apparently works to stop this process in it's tracks.  Those sneaky little caffeine molecules bind to the adenosine-receptors first, preventing anyone else from getting in there.  This stops the whole chain reaction and prevents T-cells from travelling into the central nervous system in the first place.

This sounds great...for mice.  This whole study needs to be conducted on humans to determine if caffeine will prevent T-cells from getting into our central nervous systems too.  If so, the hope is to develop a drug that will degrade adenosine or prevent it from being formed altogether, thus preventing the T-cells from being activated at all.

There is a problem with this 'easy-fix' approach though...I mean, it is MS, did you expect it to be easy?!

Turns out that there are adenosine receptors throughout our entire bodies.  So, a drug would have to be created that targeted the adenosine in our central nervous systems only.  Enormous undertaking to say the least.

If you're not into lining up in the Starbuck's queue 8 times per day, I suggest you wait for further research.  If you're up for it, I'd be happy to research human-sized running wheels for you.  Let me know...

Let's Get Outta' Here

There comes a time after every devastating diagnosis, traumatic event and heartache when you simply need to escape.  It's been just over three months since I found out that I have MS and, you know what, it's time for a vacation.

I'm off home to visit family and friends in Niagara, Ontario and then my Mom and I and two of our friends are off for a girl's trip to Quebec.  We're stopping in Montreal for shopping, the Eastern Townships to pamper ourselves and then to Quebec City to take in the sights and street cafes.  I can't wait to lounge at an outdoor bistro with a cappucino in hand and bone-up on my French.

Montreal



Eastern Townships



Quebec City

Not like we need an excuse to go on vacation but, here are the proven benefits of just taking a break from the daily grind once in a while:

• Relieve stress
  The very first benefit of leaving everything behind and relieving your brain of all your worries is reduced stress.  Several studies have shown a direct link between stress and health conditions such as headaches, cardiovascular diseases, cancer and other types of infections acquired as a result of a weaker immune system. It has also been scientifically established that taking vacations reduces the incidence of burnout.  Relief from stress often gives us a new perspective on life, allows us to regain energy and often to find simple and sometimes obvious solutions to problems that had previously seemed impossible to solve.
• Improve your mental skills
  Some studies have found a positive relationship between vacations and intellectual function. A well-rested mind that is free of worry is often more effective.
• Improve your physical health
  Besides getting you away from daily stressors, a vacation often gives you the opportunity to catch up on sleep and exercise, two simple remedies for many aches and pains.
• Strengthen family ties
  Too often, in our fast-paced daily routine, family relationships suffer. A vacation is a great opportunity to discover each other in a different setting and to build lasting memories.

I plan on doing all of the above over the next 12 days.  I'm also going to work really hard at strenthening the "family ties" between me, my favourite red wine and a lovely Quebec specialty cheese at the local Fromagerie!

I'll still be blogging while away so, I'll let you all know what treasures I find!

Love Ali




Special Mention Goes To...

Andrew C!!!

Andrew is participating in a half-marathon with the 2011 Scotiabank Group Charity Challenge.  The Scotiabank Vancouver Half Marathon & 5k is taking place on June 26, 2011 at 7:00 AM and is being held to support the Multiple Sclerosis Society of Canada - BC & Yukon. 

Andrew says:
Thank you in advance for all of your support!! I have chosen MS as it affects and demobilizes hundreds of thousands of Canadians each year. Personally, it hits home as my grandfather died with MS and two of my aunts are currently living with this disease. There is great hope as there are treatments currently being tested at the University of British Columbia's hospital that can help restore nervous system functioning and halt further degeneration. We are close to making significant gains on fighting MS, please support! Thank you again for any donation and I wanted to confirm that 100% of your tax-deductable donation is going to this charity!

If you are interested in donating to support Andrew, please see the link below and THANK YOU for any help that you can offer!

http://my.e2rm.com/personalPage.aspx?registrationID=1112927

Ali xoxo

Puff Puff Pass

"It's absurd.  I can go get morphine pumped into my system and nobody's got a problem, but all of a sudden they're really worried if I smoked a joint...I'll be smoking weed until the day I die." Montel Williams

Montel Williams is an American talk show host and author who also happens to have MS.  Since his diagnosis, he has become an outspoken marijuana advocate for treatment of the disease and relief from symptoms.

I have never been a major pot-smoker.  I was a sporadic social smoker in my teen years and early twenties; it was fun at parties when I had nothing to do later that day.  I barely ever smoke it these days and haven't given pot a moment of serious thought...until now.  

In Canada, there are two categories of patients that have access to legal marijuana and cannabis products.  Category 1 is for end-of-life care and uses the drug to relieve pain, unwanted weight loss, nausea and seizures prior to expected death.  

Category 2 is for patients who have debilitating symptoms of a medical condition; this is where we MSers fit in.  Don't get too excited all of you party-animals out there; you must have your physicians approval prior to going through a government application process and even then, approval may take up to five weeks. So, this is definitely not the route to go to score some legal bud prior to that weekend get together. 

The effects of cannabis products have been studied in large medical trials and the results are promising. Once thought to just improve mood and 'good feelings' (Captain Obvious says: "duh"), cannabis has now been statistically proven to help loosen stiff and spastic muscles.  Cannabis is also shown to reduce pain caused by MS (Ex. girdle band pain etc.) and helps with mobility in a major way.

The most exciting findings to come out of the studies to date are from the animal models.  In looking at long-term benefit from cannabis use, animal studies have shown that nerve cell death is slowed and the substance may actually prevent against further cell damage.  Now, this is amazing.  Can you imagine if pot could help slow down the damaging effects of our disease?!  Holy cr*p, like, hand me some rollies already!

In the largest studies of cannabis' effect on MS, researchers have used THC (D9-tetrahydrocannabinol) as an oral treatment (swallowed, not inhaled) and cannabis plant extract.  Now, I will admit, I tried the THC pill a few weeks ago; THC is the primary, active ingredient in cannabis.  

I wanted to see if it helped with any of my symptoms.  I can report to all of you out there that...I don't remember.  I simply recall it taking a super-long time to kick in (hours) and then, whammy, happy times.  Seriously, not a care in the world.  I guess that, for me, the THC pills worked to alleviate the stress and worry that have plagued me since my diagnosis.  This is good.  Could I have worked, written, carried on a normal conversation while using them?  No. Definitely no. 

There is always good, old-fashioned smoking marijuana instead.  This is Montel's method and the results are faster, less mind-bending and go away faster.  This seems to be the preferred method for getting your dose in the MS community. Multiple Sclerosis symptoms wax and wane in most cases throughout the day. The smoking-method gives you more immediate control over your treatment.

Of course, it's not all sunshine and rainbows.  It seems that the way you take your cannabis really does matter.  In people who simply smoke pot, long-term effects (12+ months) have shown deterioration in mental acuity and speed of thought processing.  There is also the cancer-issue; burning and sucking in this substance has been shown to increase cancer risk.

So, as is the way with all things MS, it's complicated.  As I've said before, if it makes you feel better and helps you with your disease, do what you need.  Just take care if you don't have a legal prescription; I'm sure shuffling along in leg cuffs is difficult enough even without a disease that screws up your walking.

Special Mention Goes To...

Dads!!!

Happy Father's Day.  To all of the dads out there living with MS or helping to support their afflicted kids, thank you so much and have a wonderful day!

Ali xoxo

Picking Up The Pieces

So, following the (stupid, unbelievable, ridiculous...) riot in Vancouver, local citizens have come out in the thousands to clean up our fair city.  I'm just guessing that 100% of the people contributing their efforts to clean up are not actually the people responsible for trying to destroy it.

There is an enormous sense of disgust and disbelief around town.  Just last year we were all riding high on the wonderful atmosphere of the Olympics; celebrating with guests from all over the world.  The feeling was so amazing, like a huge, global community all celebrating their own athletes and all supportive of each other's homelands.

This was the EXACT opposite.

So, to everyone inadvertently involved who came from far and wide to watch the game and experience Vancouver; we're sorry this happened and deeply embarrassed.  Congratulations to Boston on winning the Stanley Cup; you deserve it.

Okay readers...I can't believe I feel the need to discuss this on a MS blog but, back to normal next week.  Thanks for checking in, love Ali xoxo

UPDATE:  OMG, I just read the FUNNIEST article, opinion-piece on the Vancouver riot.  See link...you'll laugh, I swear...  http://www.dlisted.com/2011/06/16/this-is-why-we-cant-have-nice-things

The Vancouver we love - and the only one we want...

Shame On You!

In case you haven't heard, the Vancouver Canucks lost in Game 7 tonight to Boston and lost the chance to bring the Stanley Cup home.  Yes, we're talking about a hockey game here.  A hockey game.

I reiterate that fact because, there is a riot going on right now on the streets of Vancouver.  No, I'm totally not kidding right now.  I wish I was.

This is absolutely ridiculous.  There is talk that the group causing problems is the same group that began trouble in Toronto during the G-8 summit last year.  They wear black masks, rile up the crowd and start smashing things.

But...this is a freaking hockey game people!  Give me a break; this is Vancouver. The most calm, chilled-out city I've ever been in where people feel comfortable wearing sandals to church, where people were high-fiving each other on the street this morning in anticipation of the game tonight.

Now we've got the mayor coming out to speak and try to calm down all of these total psychos.  Really Vancouver, shame.  I'm embarrassed to live here right now.  Grow up.  It's f*cking hockey!

Nice Chompers

I have a dentist appointment tonight and it brought back a strange memory.  I recently heard about a woman who had near-perfect dental health and, once she was diagnosed with MS, had four cavities within a few months.

Is this a symptom of MS?  Was it due to stress, added nighttime grinding and perhaps a lack of upkeep with her toothy routine because she had bigger problems to deal with?  I am really interested in this so...I'm going to do some research...back in a bit....................................

Ahhhh well, crap.  Looks like MS and tooth decay MAY go hand in hand folks.  As with everything else I've found out about this stupid disease, there is no real answer and the subject is complicated.  I know you didn't really expect anything else right? 

Apparently the major issues are decreased saliva production from MS medications (Ex. Copaxone), loss of fine motor skills used to thoroughly clean the mouth and a higher acidic content in the bodies (and saliva) of MS patients. 

Tooth injury is also a major concern because, as you know, most of us have problems with abnormal gait & balance and have a tendency to fall.  Sometimes you just don't have enough warning or coordination and instead of breaking your fall with your hands, you're breaking it with your pearly whites and freshly-applied lip gloss.  Trust; I know what I'm talking about here.

Anyway, I also looked up tips on combatting tooth issues and, they're pretty much what you've been hearing since the time of your first Batman or Little Mermaid toothbrush.

* Brush at least twice a day with a flouride toothpaste
* Floss daily
* Brush your tongue and use a tongue scraper
* Avoid sugary treats and eat a balanced diet
* Use an antibacterial mouthwash (I personally love Crest Pro-Health)
* Visit your dentist for regular (twice a year) check ups and cleanings

Also, if you have problems with hand control, invest in a flosser: a plastic wishbone-looking device that you thread your floss through.  Then it's way easier to floss...

I have never had problems with my teeth and was blessed with straight, strong chompers.  I admit that, since my diagnosis a few months ago, I haven't been as diligent with my dental routine as usual.  (I know, I know Mom - I'm working on it)  I guess I'll have to break out my night guard (for grinding my teeth) because, lord knows, I've been doing a lot of stress-related grinding lately.

So, now you know.

MS has taken several things from me over the past 6 years and especially the last 6 months.  I have been fighting to get them back tooth and nail but, I now realize, I'm not willing to give up any teeth, or nails, at all.  Screw you MS...you took my high heels but, you're not getting my smile!

Anyone else have dental-related information or advice?

Keep On Keeping On

Emotionally, I have been feeling pretty bad for about four days now.  It's been three months since my MS diagnosis and I think it's just really sinking in that this sucker is not going to go away.  It lives with me now and shares my body and there's not much I can do about that.  It's pretty difficult.

Anyway, I've been trying to get through this patch of...um, despair, hopelessness, fear...there isn't really a right word for any of it... I realized that this is SO particularly difficult because the person I was closest to and talked to about everything was my grandmother.  And she passed away in November.

I have been trying to keep her positive thoughts and words in my head at my darkest times and today, I woke up with a memory.  She always talked about this song.  She didn't know the artist and she didn't have any details about it except the name and that she loved the lyrics.

The song is You'll Never Walk Alone.  It was created by Rogers & Hammerstein II for the musical Carousel in 1945 but has been reproduced by several artists since then, including Elvis.  I looked up the lyrics though and, I can see why she found it so uplifting.

I listened to this song today and it made me feel better, more hopeful.  I'm including the lyrics here for anyone else out there who is going through the same thing as me or something just as difficult.  I hope it helps you too.

When you walk through a storm
Hold your head up high
And don't be afraid of the dark

At the end of the storm
Is a golden sky
And the sweet silver song of the lark

Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown

Walk on walk on with hope in your heart
And you'll never walk alone
You'll never walk alone

When you walk through a storm
Hold your head up high
And don't be afraid of the dark

At the end of the storm
Is a golden sky
And the sweet silver song of the lark

Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown

Walk on walk on with hope in your heart
And you'll never walk alone
You'll never walk

You'll never walk
You'll never walk alone.

That Stings

Several years ago, before MS was even a part of my vocabulary, I saw a news clip about an experimental bee sting therapy for the disease.  For some reason, I have always remembered that; I guess because it seemed so odd to me.

I am allergic to honey bee stings (the type of bee primarily used in this treatment) so, there is absolutely no way that I can try this out and let you know the results.  If any readers out there have information or experience on the subject, please share.  I am so curious!

I did some research on bee sting therapy though so, I'll share what I learned in case you're interested (and NOT allergic) - or squeamish!  

The technical term for this treatment is Bee Venom Therapy (BVT) and it falls under the umbrella of apitherapy.  Apitherapy also includes the use of bee products like pollen, propolis (a waxy substance), royal jelly and honey to treat autoimmune disorders and other ailments.  Currently, BVT and apitherapy are used mainly in the treatment of MS, lupus, rheumatoid arthritis, depression, menstrual cramps, varicose veins and dermatitis. 

In the majority of cases, a bee is held with tweezers next to the skin and allowed to sting.  The stinger is left in the skin for up to fifteen minutes with between twenty to forty stings administered per session.  Most patients have two to three sessions per week and report that MS symptom relief will be noticed after six months or more.  Some patients choose to have the bee venom injected under their skin using a syringe instead.

So, yikes.  That is A LOT of stings...and dead bees.  Well, actually, only the female bees die; their stingers are connected to their abdomens.  The male bees will go on to sting another day.  Lucky buzzers.

You're probably asking:  why bee venom?  What's so special about this treatment that patients will subject themselves to thousands of stings?  Well, I'll tell you right now...

The main, active component in bee venom is an anti-inflammatory substance called mellitin.  When I had a relapse a couple of months ago, my neurologist had me do a three-day IV treatment of Prednisone, a powerful corticosteroid.  This was used to reduce inflammation in my brain and spinal cord and to reduce the severity and duration of my MS relapse.  Mellitin from bee venom is rumored to be 100 times more effective as an anti-inflammatory agent.

Bee venom is said to activate our adrenal glands, which, in turn, stimulates a natural healing response.  It is also said to work because the bee sting itself causes inflammation at the puncture site, prompting the body to mount an anti-inflammatory defense. Presumably, this then works to reduce inflammation in areas where myelin is being attacked and voila, reduction of MS symptoms.

Bee venom also contains a substance called adolapin, which is known for its painkilling properties.  Together, all of these things are rumored to improve mobility, vision, feelings of numbness and are said to promote a sense of well-being and increase energy levels.

Sounds good right?  Well, before you run out to find the nearest hive, lets look at the medical research.  Studies using both mice and human subjects (relapsing-remitting MS patients) have not only shown no benefit, some studies report worsening of symptoms.

But...despite the lack of medical support, thousands of MS patients worldwide swear by their bees.  In the United States alone, it is estimated that 10 000 or more patients are actively using BVT as their main MS treatment.

So, whether this is scientifically proven to be beneficial or not, it's happening...and it's working for people.  Maybe it's all mental, maybe it's unexplainable so far, maybe it's undiscovered as of yet. 

I don't think it really matters as long as it's helping you.  When you have an incurable disease, you use what makes you feel better. 

Next time your gut tells you to run away from that little bee, perhaps stick around, offer him your arm instead and let him work his magic !

Can You Hear Us In Beantown?

Dear Canucks,



Signed,

Vancouver.
-------------------------------------------------------
UPDATE:  I guess they didn't hear us...   :(

Well, I Never!

So, a couple of Christmases ago, my mother, sister and I went to the symphony.  We got a few drinks and sat in the lobby, relaxing while waiting to take our seats.  A woman walked by and the three of us just zeroed in on her adorable shoes.  They were shiny black satin heels, about 5 inches, with an ankle strap ribbon that tied in a bow.  Oh my, we were entranced.  The woman noticed us all staring at her lower half and stopped walking, looking at us with a quizzical face.

I looked up and apologized.  "We're just staring at your shoes; they're beautiful!"  I said.  She nodded, laughed and said "I know, this is their first night out." 
See, fellow shoe-lover.

Since my feet are all numb and my balance is zilch, I have been unable to wear heels so, I'm into flats now and, funnily enough, hats.  Well, never did I think that I'd be into another "accessory" of sorts too - some things you just can't predict.

This week I was in the lobby washroom at work and while washing my hands, I noticed that a woman down the way had a cane.  Not just any cane; my cane!  I struggled with myself; should I say anything?  Is it kosher to compliment and discuss walking aids like women do clothes and shoes?  What is the etiquette here?

Anyway, I just said to her, "I have that cane too; how do you like yours?"  She looked surprised at first but, then she smiled and said "I wish I didn't have this thing but, I was glad to see that they're made in different colours and patterns!"  My thoughts exactly.  We had a short, friendly discussion and now I know, a cane can be an accessory too.  Therefore, using female-math, it's okay to discuss in detail.  ha ha

So, I was born a blonde.  I swore up and down that I would NEVER dye my hair another colour.  Well, scratch that because a few years ago, I got bored and wanted to see what it would look like brunette.  My father has really dark hair and light eyes with super-light skin like me so, I thought I'd look okay.  I took the plunge and had it dyed dark; I really liked it and swore I would NEVER go back to blonde.

I stayed brunette for over two years.  I got bored again.  I had it dyed back to blonde and there it stays.  I recently found myself saying to a friend "I will NEVER dye it dark again!".  Hmmm, I stopped and realized, I have learned a lesson.

Never say NEVER.

I thought I'd be wearing heels until my dying day.  I thought I wouldn't need a cane.  I thought I'd always be blonde.  I try not to say "never" any more because, as we MS people know, you just NEVER know.  When you say "never", it's kind of like saying "can't".  And we all know, when push comes to shove, there aren't many things we can't handle. 

Dream a Little (Crazy) Dream

A few posts ago I was b*tching about how the Low Dose Naltrexone (LDN) that I take for MS has stolen away my precious, crazy dreams.  ha ha  Well, last night I had my first abnormal and totally weird dream in months.  Perhaps the "realistic (AKA: boring) dreams" side-effect is loosening it's grip?!

So, I'm on a family vacation for someone's wedding.  I'm sitting on a beach on the ocean in Honduras and I'm lounging right beside a resort bar where my family is dining.  All of a sudden, this multi-coloured, cartoon-looking frog hops up and hangs out beside me.  He has the number 15 in marker written on his back.

My aunt notices him and gives me her camera to take a picture.  But, when I try to unzip the camera case, I find that it's layers and layers of different camera cases, like a Russian nesting doll.  The frog hops away and my aunt gets upset with me.

So, I get up and go into the ocean and while underwater, I see a lime-green fish lurking there in a cave.  He is enormous with an evil face and is made up of all of these leaf-like scales that fan in and out.

Then, it dawns on me why I'm actually in Honduras.  I'm a detective and I'm there to solve the missing person case of a tourist.  Suddenly (I'm still under water), a man swims in front of the fish and it grabs him, sucks him into his mouth in one gulp and he's gone.  Eaten by this evil fish.

I realize what's happened to the missing tourist, mystery solved.  Dream over. Me, happy that I FINALLY have an entry for my dream journal after months of stagnant, life-like dreams.

According to the drug information and patient testimonials for LDN, the abnormal dream side-effects typically go away after one to three months.  I'm right on target there at about two months.  But, in my case, I welcome back with open arms my NORMAL abnormal dreams and kiss goodbye those boring realistic ones where I'm cutting vegetables for hours or tying shoes etc.

And MS gets a tiny bit easier to handle day by day...

Ali.

What A Relief ?

We started talking about CCSVI and Libertation treatment for M.S. last week and I gave a brief overview of what it is and how the surgery is performed. 

I just received a related comment and Deanna says:

Hey Ali,
I just found out my veins need a plumber. So I'm trying to get the funds together to go to a specialist in California.
I've tried stem cell treatment in Israel in 2009 and that worked amazingly (I didn't need my cane for about 7 months and I no longer needed to get 'stoned' to relieve my excruciating pain!)
But I've slipped drastically since then and I'm desperate for any help!
Since I have PPMS, there's no med out there for me.
Why doesn't the medical system say 'gee this method isn't yet approved as a MS treatment BUT your veins shouldn't be clogged in any event'?
So hopefully in a couple months I'll be on my way!
I am scared yet excited and ANGRY to think that my life may have been unnecessarily full of torture.
What are your thoughts on this procedure?
Take care,
Deanna

Let me begin by saying that you're a very brave woman and I applaud your efforts to manage your M.S. by any means.  I am 100% on-board the "if it's broken, fix it!" band wagon with you.  Even if CCSVI testing and Liberation surgery is not approved for use specifically as an M.S. treatment, if your veins are f*ucked up, they should be fixed.  Is this not why we, as Canadians, pay huge taxes towards health care?

This story will probably make you angry.  My Grandmother had a heart attack back in the day and was in ICU at the hospital.  It was discovered that her veins (jugular et al.) were not draining properly and they did a Venoplasty for her immediately.  Just like that, totally covered by health care.  Exactly the procedure being performed out-of-country for tens of thousands of dollars and all being paid for out of pocket by desperate M.S. patients like you and me.

I have no answers, just conspiracy theories.  I do however, have hope.  Call me naive but, I still think that basic decency and honesty will always prevail.  After posting on this site about Merck and how they are paying off neurologists to prescribe Rebif even though it may not be their best option, I was FURIOUS.  Not to mention extremely sick to my stomach and jaded.  But, I can't help it; I think bad karma on that big of a scale is going to come around in a major way and bite every single one of them involved.

It also made me realize that sometimes you just need to get on with it, take the bull by the horns and do your own thing.  I've heard this and that from doctors, radiologists, counsellors etc. regarding Liberation surgery but, you know what, it's our decision to make.  Even if the results help you for a short time, it's a bit of much-needed relief.  Even if the surgery gives you no relief, at least you tried everything you could.

So Deanna, that's what I think.  I want Liberation surgery too and once I get the $13 500 saved up, there is not a person in the world that can stop me. 

If it makes you feel a bit better, the M.S. community is not taking the situation lying down.  My friend's father was interviewed by the Globe & Mail recently based on letters that he wrote to the M.S. Society of Canada.  He asks why the Liberation procedure has not been made available in Canada; the country with the largest M.S. population in the world.  See below for the article:

http://www.theglobeandmail.com/life/health/new-health/health-news/multiple-sclerosis-patients-navigate-the-minefield-of-for-profit-care/article2015967/

I know that it's so incredibly frustrating to have that 'possible cure/relief' carrot dangled in front of your nose.  I can only hope that, while I'm saving my pennies for Liberation, Canada steps up and decides to treat its suffering citizens at home where we belong.

Deanna, please keep me posted on your progress and I wish you all the luck in the world!  Ali

 

Smokin'!

I have this song stuck in my head: 

"It's gettin' hot in here; so take off all your clothes".  Do you know the one I'm talking about?  Or, "The roof, the roof, the roof is on fire.  We don't need no water...".  Well, you likely know the rest.

So, basically...I'm hot!  I blow dry my hair...my forhead sweats.  I go to the tropical bird conservatory...I turn as red as a beet.  I sit in the hot tub...my legs turn to jelly and I see white spots.  I looked it up and apparently, this is what's going on:

"As people with MS, we have lesions on our nerves where demyelination has taken place. This slows the ability of the nerves to function, and heat further slows down nerve impulse transmission in demylinated regions. Even a very slight increase of as little as one-quarter to one-half a degree in the body’s core temperature is enough to cause symptoms of heat intolerance."

Blah, blah, blah.  My hair is getting flat!



Now, I'm going to embarrass my Mom but, this is the best reference I can think of.  When I was living at home in Ontario, I would sometimes wake up in the dead of night FREEZING cold.  I'd get up, look outside and see falling snow through the built-up ice on the outside of the window.  I'd feel the heat vent and, all seemed fine but, why were my teeth chattering?! 

I'd make my way out into the hallway, tiptoe quietly along and from under my mother's bedroom door...a cold draft.  Hmmmm?  I'd open the door slowly and.........whoosh!  An Arctic freaking cold front would hit me in the face from her wide-open window.  I'd look over to Mom laying spread out on top of the duvet with the icy wind ruffling her hair, dead asleep and a big smile on her face.

What the hell you ask?  And my answer to you is:  Menopause.

Yes, that's right.  I have feared The Change ever since those freezing cold nights back in Niagara.  Well, I fear it no longer because I'm already experiencing the make-up-sliding-off, burning-bra feeling, sweat mustache effects of it now!  What the heck is a girl to do?  How do you beat the heat?

Well, from the Menopause Files I bring you the following suggestions.  A couple of years ago I bought my Mom a Chillow for xmas and I'm thinking I should be getting one too.  See here if you want one: http://www.chillowstore.com/om/  FYI, they also make them for dogs because apparently pups get really hot too.

Swimming is always a good idea; it is recommended that you wear a hat if you're swimming outside (good excuse to go shopping for cute head wear!).  There are even outdoor air conditioners.  Seriously.  They`re called Misting Fans; check it out... http://www.cool-off.com/.  So, we're not alone by a long shot and there are several options out there to keep the heat at bay and still enjoy the summer.

Hey, if all else fails, I can look at it like a test-run for later on and start compiling the above items.  And to  the M.S. guys out there, you can be more sympathetic to your wives while gaining insight into those dreaded hot flashes.  If anyone is wondering what to get me for my birthday this year, I would like to request one of those little mini fans and perhaps a new blender.  I figure cold Margaritas will work just as well as anything else and if I drink enough, I won`t care how flat my hair is.

UPDATE:  My Aunt Peggy just sent me this information on cooling neck ties (made in Canada) - thanks Peggy xoxoxo   http://www.practicaldesign.ca/ties.php

A Dream Come True

I'm walking outside with my friend; I can hear every step.  Click, clomp, click, clomp.  My cat is winding in and out between my feet and I almost trip.  It begins to rain.  I can hear the drops hitting the leaves on the trees and I can smell the moisture in the air.  It's a bit chilly.  We keep walking for what seems like hours.

BEEP   BEEP   BEEP

I wake up, turn off my alarm and when I look at the display, I can't believe it's already 7am.  I'm not rested at all.  I feel like I've been up all night walking in the rain.  What is going on here?

It's the Low Dose Naltrexone (LDN).  Some of you are nodding your heads right now.  The rest of you...keep reading.

LDN is an experimental oral medication used to treat M.S.  In its full dose, it is used to manage alcohol and opiate addiction.  In much lower doses, it helps to relieve the symptoms of M.S. among many other diseases.  I take this drug.

The great thing about LDN is that it began working for me within three days, it speeds up the time taken to recover from a relapse and several patients report that they have less lesions as evidenced by regular MRI's.  The major bonus is that LDN has virtually no major side effects.

Except One:  abnormal dreams.

Before LDN, I was already a vivid dreamer whose nights were jam-packed with magical trolls, flying bodily through the clouds, purple people, talking animals etc. I kept a dream journal and delighted in replaying my movie-like experiences upon waking. It was exciting going to sleep every night; it was an escape from reality and there was no way I could mistake my night life with the daily routine.  Until now.

Who has dreams about making coffee, putting on shoes (flats, no less), talking on the phone and sitting on the couch?!  For hours; all night?!  If I wasn't already asleep, I'd pass out from boredom.  My dreams (eight looooooong hours of dreams) are mimicking daily life so, it's like I'm doing what I always do on an average work day...24 hours a day.  Another M.S. patient taking LDN described her experiences like this: 

"…my dreams were psychedelic epic tales of suspense and surrealism." 

Lucky lady!!

Although, I am extraordinarily grateful for LDN and the relief I've gained from being on it, I can't help but laugh when I see the warning "may cause abnormal dreams".  I already had those in spades.  I really liked them.  I think that my pharmaceutical literature should be altered to read "may cause dreams so realistic that you realize you may have to spice things up".

So, I'm taking some travel plans down from the shelf, dusting them off and am planning a trip to Ireland.  Maybe I can see a real-life Leprechaun and then I'll be able to sleep a little less easy.  Although, I mustn't whine too much; even though I can't fly in dreams anymore, I can walk in real life.  And that, my friends, is better than anything.

Do any of you M.S.ers out there have any weird LDN-inspired dreams you'd like to share with the group?  I need them for my journal; it's getting a little sparse.

A Sheep In Wolf's Clothing

My Grandmother Dorothea used to always say "everything happens for a reason" and if you can't see the reason in front of you, you'll see it down the road.  Such a wise woman she was.

When I got my diagnosis, all I could say was WHY?!  I was utterly gutted, depressed and most of all, angry.  Like, furious.  A few weeks ago when I was on my way into this remission and doing well, I saw a woman about my age at the drug store.  She obviously had M.S. too and I remember thinking "she looks so mad".  Every movement she made and every facial expression conveyed a sense of anger and betrayal.  She was whipping her cane around like she wanted to hit something...really hard.

I remarked on this to my friend at a later time and she simply said to me "that is what you looked like". 

Wham.  What?!  I did?!  I thought I was doing such a great job of hiding it and being positive. Oh well.

I am doing MUCH better now.  If I had to wager a guess I'd say I am about 99% into remission and speeding along pretty fast.

But...

M.S. has taught me to open my eyes (now that I have my vision back! ha ha), smell the roses and enjoy life.  I used to power through everything with the end goal of getting it completed.  I was always looking to the future and looking forward to what it held for me.  Now, I know that the future is uncertain.

These days I have a new appreciation for "Right Now".  I smile more.  I laugh more and I look around more.  I'm not in such a great hurry and I spend less time in my head living in the future.  I am still a planner (don't think I'll ever lose that analytical side) but, I concentrate on planning the fun things that I can see down the road.  I try not to worry so much about the stuff I can't see yet.

Now I know what Gram was talking about.  I think there was a reason for me to get sick.  Maybe it was to force me to slow down and live in the moment.  I've never really done that before.  Maybe it was for me to reach out to other sick people and draw us together; maybe I can help someone else.  Maybe even just one other person.  I hope so because that's a lot of 'maybe's'.

She also used to say "This isn't a road block, it's just a speed bump". 

You know what Gram, you're right.  You were always right.  I'm listening now.

Love Sugar xoxo

UPDATE:  Several people have enquired so, to answer your question, my Grandma is 90 years old in this picture.  Yep, for real. 

Eye Spy

Right after I was diagnosed with M.S., I was sent to see an opthamologist within the same clinic.  I was in a state of shock and had no idea why I needed to see an eye doctor.  I sat in the hallway with my cane just waiting and staring into space.

A woman came up and sat beside me in the hallway.  Making small talk she asked "Do you have Optic Neuritis?"  I replied "No, Multiple Sclerosis." Well, she began to laugh and couldn't stop.  I had no idea what was so funny and thought briefly, maybe M.S. makes you crazy too.  Great.

It turns out that Optic Neuritis is a symptom of M.S. that affects approximately 30-40% of patients.  I had been showing signs of it for about 3 years before I was actually diagnosed and thought it was the old 'aging process' explanation again.  I was experiencing blurry vision that would clear on its own, flashes and spots and one day, I lost the bottom half of my vision in one eye.  It eventually came back right before I went to see an opthamologist on my own and I didn't think of it again until the whole M.S. thing.

During this time, I also noticed that my normally blue eyes were turning grey and kind of a steely colour.  I brought this 'phenomenon' up with my doctor very recently and now it was my turn for someone to look at me like I was crazy.  He chuckled and said "you've been diagnosed with Optic Neuritis right?"  I replied that I had indeed and then....duh, light bulb moment.  A symptom is loss of colour vision.  Textbook. Ughh.  My eyes weren't turning colour - I just couldn't see what colour they were any more.

I'll bet that a ton of you out there had no idea that this was a symptom of M.S.  I sure didn't.  I'm happy to report that I have almost all of my normal vision back and my eyes are blue again - well, at least to me.

So, now you know.  If you see an M.S.er out there with horribly mismatched clothes or perhaps studying paint swatches or eye shadows with an utterly lost look on their face; have pity.  We probably won't be out of style for too much longer...  :)

Presented (Mostly) Without Comment

All I have to say is, I'm glad that I did my own EXTENSIVE research before beginning any M.S. drug regime and did not listen to my doctor's extreme insistence that I use Rebif and Rebif only.  I'll stick with my Low Dose Naltrexone, thank you very much.  :)  My gratitude to Stephanie M. for sending along the following link; I had an inkling already but, now I know for sure...

http://www.wheelchairkamikaze.com/2011/05/big-pharma-behaving-badly-and-making-me.html

It's A Numbers Game

When I started this blog roughly one month ago, I thought that I'd write a few times, like, two people would read it and then I would shut it down. 

I was wrong.  I LOVE writing; it is such a stress-reliever and it has made me realize that I am not alone.  Not by a long shot.  M.S. tried to take me down; it tried pretty freaking hard actually but, due to the support of all of you out there, I'm doing really well.  I feel...happy, and...hopeful.  And strong.

My page views reached 5000 hits today across 21 countries and I would just like to say THANK YOU for reading.  I used to be such a private person but, when I got sick I couldn't do it anymore; I needed help.  Now that I've received such an outpouring of help and support, I don't want to be introverted anymore.  I realize how important a large network of supporters is, especially when you're ill.  I'm tearing up here...ha ha

I am taking the long weekend off (Victoria Day here in Canada) and will be back Tuesday.  Enjoy May 2-4 all you Canadians and for everyone else, have a great weekend!

Love Ali.
   

You're So Vein...

Before my M.S. diagnosis, I'd never heard of CCSVI.  If you don't have M.S. yourself or know someone with it, you may be scratching your head right now too. Well, a brief synopsis:

Until recently, most people were under the impression that Multiple Sclerosis was an autoimmune disorder.  In the case of M.S., this means that our immune systems recognize myelin (the protective coating around our neurons) as an enemy and begin attacking it.  This in turn causes lesions or sclerosis (scars) in the brain and/or spinal cord.  Hence the name Multiple Sclerosis.

Enter Paolo Zamboni, a professor of medicine at the University of Ferrera, Italy and loving husband to his wife, Elena.  Elena was diagnosed with M.S. at the age of 37 and Zamboni, watching her decline, vowed to do whatever he could to solve the mystery of her disease.  Romantic right?  And not just that, but maybe lucky for the M.S. community too.  So, in 1995 Dr. Zamboni began his quest to save his wife...

What he discovered is that M.S. may not be an auto-immune condition at all, but a vascular disease; a matter of simple plumbing.  Basically, Zamboni proposes that the veins draining blood from our brains are blocked, malformed or even twisted, causing blood to accumulate and flow back into the brain.  This is a problem because iron is a heavy metal (not the kind you can rock out to) and can cause cell death and inflammation. And basically, what is Multiple Sclerosis?  Let's all say it together:  cell death and inflammation.

Dr. Zamboni named this disorder Chronic Cerebro-Spinal Venous Insufficiency or CCSVI.  You can stop scratching your head, now you know.

So, how would someone go about fixing faulty brain veins?  Well, according to Dr. Zamboni, you perform a venoplasty and in some cases, a vein stenting.  This procedure involves inserting an IV catheter into the femoral vein on the upper thigh.  Following on x-ray, the doctor winds it all the way up to examine the azygos vein (that drains the spinal cord), the subclavian veins (that drain our arms) and the internal jugular veins (the brain-drainers).

By squirting dye through the catheter in the thigh, you can see on x-ray where any drainage problems are happening.  If an obstruction is found, a balloon is inserted into the problem vein or veins and inflated, stretching the walls and restoring proper blood flow.  This surgery in reference to M.S. has been termed the "Liberation" procedure.  Usually the balloons are good enough to keep the veins open and flowing properly but, in some cases the veins will get lazy and go back to their old ways.  This is when a stent will be inserted to keep those suckers open...and this is where there is A LOT of controversy.  Those little stents can come loose and travel to places like your heart or more commonly, blood clots can form around the stents in place; this is called thrombosis.

This is not the only controversy surrounding CCSVI and Liberation.  Take a peek at any article, show, news spot or even talk to a few different neurologists and you'll see the major polarizing effect that this information is having on the M.S. community around the world and especially, here in Canada.

Now, I know I promised to keep this post a brief synopsis so, I'll continue on this topic over the next few entries because there is a ton of info to cover.  I also know that we Canadian M.S.ers and our families have STRONG opinions and feelings regarding how our country is addressing (or not addressing) the issue of CCSVI.

Please email me (address in my profile to the right) or comment if there is anything regarding this topic that you'd like to weigh in on and I'll address it.  I also have very strong opinions and many, many, many questions on this topic so, I am looking forward to diving in.  If any of you have had, or know someone who has had the Liberation procedure and would like to share, please feel free to contact me.  I know that there are a ton of people out there right now wondering if they should take the leap and get the procedure themselves (including me) and all we need is some more information.


As always, thanks for reading!
Love Ali.  xoxo

Special Mention Goes To...

HAPPY BIRTHDAY KIM!!!!!!!

Have a large glass of wine and enjoy the day; I'm sending birthday wishes your way!

Ali.

Pro Fur

Fur, down, feathers, fins, whatever; I love it!  I can't name one person in my entire family, immediate or extended, that doesn't adore animals.  I am one of those people that thinks babies and children are really cute but, put a goofy puppy in my path and I just melt.  I am fully versed in the animal baby-speak voice; you fellow animal lovers out there know what I mean by this.

I currently share my home with two adopted cats named Montie and Roper.  Well, it's actually more accurate to say that, by all appearances, I live in their house and exist to cater to their every wish.  If you look in the dictionary under the definition of "pampered" you'll see a picture of my pets.  Check this out... 

That being said, I don't mind it one tiny bit.  I don't mind the little tumbleweeds of fur that I vacuum up every other day, or the constant expense of industrial sized lint roller refills.  I don't mind the ever present threat of asphyxiation due to Roper's penchant for sleeping on my pillow or Montie's old-man snoring while nestled in the crook of my arm. 

They make me feel better.  They rely on me and don't care if I walk funny sometimes (unless I step on a tail accidentally) or can't go to work or drive.  The only time that they stare at my cane is if it interferes with the sight line to their food bowl.  Actually, my recent disability leave went in their favour as I was at their beck and call 24/7 and they always had a warm lap to sleep on.  My M.S. does not affect them at all and I really like that; it makes me feel healthier somehow.

If I didn't live in a condo, I would most likely have an entire petting zoo situation going on.  I have always wanted horses, dogs and funnily enough, a cow.  Not to work or ride or even do anything purposeful at all really; I'd just like to adopt and be surrounded by a bunch of animals.  Some people want a brood of children, some want absolute privacy and space; I want fur.

My sister and I went to the zoo yesterday and when we approached a gorgeous cheetah, she was resting under a protective tree branch (it was raining) and she was purring.  A wild, huge cheetah...purring.  So, of course, I totally turned to goo.  The animal-baby voice came out.  Embarrassing.  Unavoidable.  Animal-baby-voicing a cheetah!  ha ha

Can any of you out there relate?  Who or what makes you feel better when you're ill?

Here are a few more pictures of the animals in my life because I just can't resist:

Jake & Harvey

Cessna

                                                                 

Zarino

Buddy

Sly

 If you have any special pet-nurses that you love, send along their pic and I'll post it here for you.  :)

Ali.

Poof !!!

So, the blogger website was down for the past two days and I see that my last post (the sadness one with reference to footie pajamas) has disappeared.  Well, perhaps it's for the best; I received A LOT of emails from worried family & friends!

Yes, I am going through a tough time and yes, sometimes I get really down but, not all the time.  Not even most of the time.  I think I'm following the normal path of a Multiple Sclerosis diagnosis and I'm not too worried about spending a few days in the p.j.'s if you're all not!  I would however, like to share some of the beautiful comments that I received because they help not only me, but maybe someone out there going through something difficult as well.  Enjoy...

From:  Dad

"That picture even looks like you at what seems like about ten  years ago.  I'm sad too Al.  If I could swap your problems for my bum hip, I'd do it in a second.  There is not much that I can help with, and it  is frustrating me.  I wish that I could give you a big hug every day and make it all better.  Your blog must be difficult to scribe. I know that it makes me laugh,  it makes me cry, it makes me sad,  but when  I think of some lost soul travelling down your same rocky road reading it and being comforted by it, I'm mostly so damned proud of my 'Little Girl'."

From:  Uncle Mike & Auntie Diane

"It must be hell to have MS.  As you mentioned, there are a number of stages of reaction, and by the look of it you're sampling them all.  Heavy stuff:  sadness, grief, guilt and God knows what else.  Did I say grief?  Good grief!  When some folks find a private hell, they have trouble climbing out of it.  That's a bad neighborhood, not nice at all.  Start digging upward." 

   

From:  Uncle Kent

"My mom, your grandma, had a way with these things.  Time after time as I was growing, she would direct me thru THE DOOR.  In other words, have all those feelings but work towards going through the door, closing it on that side and get on with what you find on the other side.  She told me that way you don't miss what is on the OTHER SIDE."

From:  Mom
"I have a new one, SOTT's Guilt (sign of the times).  The world, especially the media, is, to me, the biggest contributor to guilt.  Pressure to be perfect is very pervasive in our society, even when we are ill.  Take this pill, do this diet, work harder and then you too will be perfect and happy.  What a crock of sh..............!!!!!  Like Gram said, just try and enjoy all the moments, good and bad."

From:  Tom & Carol
"You are always in our thoughts.  It would be easy for us to say have a postive outlook, enjoy it to your fullest like Grandma would like you to.  We know you are trying hard so just keep up the good progress."

These inspiring and supportive words have helped me to realize that, even though I'm sad sometimes, I'm certainly not alone.  Thank you to everyone who wrote me; you are all so special to me and you really do help so very much.

Almost all of you mentioned Grandma and I miss her more than any words could express but, her memory and spirit is with me 24 hours a day.  I know with the lessons and words of wisdom that she bestowed on me my whole life and with your support, I'll be on my way back up in no time. 

Hugs & Kisses, Ali.  xoxoxoxoxoxoxoxoxoxooxoxoxoxoxoxoxo