Apr 11, 2014

The beginning, or the end? Guess that depends on how you look at it...

My journey began about a week before Canada Day 2013.  Although looking back now perhaps it began years prior.

Sitting in my office working on an excel spreadsheet the wave first hit.  A rocking sensation.  That feeling you get after being on the rough seas on a boat for a long time and finally hit dry land.  It left as quickly as it appeared.  However in the weeks to come it would come more frequently and last longer periods.  Finally assuming I had vertigo something cause by my inner ear I went to the Doctor.  Some medication was started.  It did not have any effect.  By now the headaches have hit full force and rarely go away.  Next came a mild shaking in my right hand, likely something nobody else would notice but I sure did.

By the time August 5th came it was so severe I was unable to sit still for any length of time and was unable to concentrate or focus for long periods of a time on a computer screen.  Oddly enough the only time the sensations got better was if I actually went on a boat.  Blessed with friends that have them I spent much time on theirs and it was as if I was at sync with the sea?  So another trip to my amazing family Doctor resulted in being put on sick leave while he attempted to get me some concrete answers on what was going on.  A referral to a Neurologist, and an ENT were sent.  By now on some days my shaking was visibly noticeable to others, not just myself.

To speed this along...  The ENT determined my issues were not inner ear related, given my strong female family history of MS as well as my now compounding list of symptoms far too many to list, it was more likely that the disease that plagued many of my family members was the culprit.  At one point I had a trip to the ER as things were so bad, an emergency CT scan was done and the ER Doctor informed me that I should see a Neurologist and again suggested MS a possibility.  A subsequent ER visit gave me the same speech but an order for an MRI as well as a second referral to a Neurologist.

Now moving on to September.  Getting worse by the week, a slew of added symptoms to the mix and most days feeling frustrated to say the least.  I finally see a Neurologist who says it's good news, my MRI is clean, as was my Catscan.  No scary stuff like strokes, tumors etc... She suggests that I may have something called Essential Tremors.  She suggests a medication that could tame the tremors and help the excruciating headaches at the same time.  Although ET is typically on both sides she thought it was worth a try.  One week on the meds and I could barely get out of bed.  A Mom of a 5 year old and a nearly 2 year old with a husband that works away, this was not good.  I stopped the medication. Next appointment to her was to attempt a 2nd type of medication and now ET's had been dismissed.  Three month trial with slow dosing.  I was stoned most times, as each increase of dose happened I felt horrible for about 2 days.  Again no avail.  This time the Neurologist I had been seeing has officially given notice she is leaving the province and therefore will not be sticking around to figure out what's wrong with me.  Her words and I quote "I just have to throw in the towel here".  And she did.  Not before sending a referral to another colleague of hers however.  I see a second Neurologist, this appointment does not go well, he dismissed my symptoms, made me feel like I must be going crazy and said to come back in 6 more months.  In fact his exact treatment plan for me was to Meditate, Do Yoga and Reconnect with my Religion incase I was angry at my faith for my body falling apart.  Not that I'm opposed to any of those things, but seriously???   It has now been over 8 months, some days I cannot turn a door knob or lift my arm above shoulder height.  Some days the simple tasks we all take for granted are so difficult for me that it brings me to tears.  I KNOW something is wrong, I am too young for the right side of my body to fall apart.

Finally thanks to my incredible family Doctor who never gave up on me and knew something was wrong he pushed for two referrals to two different Neurologists in two different provinces.  The day has come to travel off island to Saint John, New Brunswick.  April 3rd, 2013.  A very long 4 hour drive by myself after hearing of the passing of a friend the night before gone too soon.  To say I was heartbroken, upset, stressed and worried about the appointment on top of it would be an understatement.  However in the back of my head I thought, I've gotten nowhere with any other specialist why would this be any different,  Maybe I am losing it?

I wait impatiently for my name to be called.  Praying that this Neurologist that came so highly recommended by my own family Doctor would be the one.  The one to figure this all out.  The one that would take it seriously, believe me.  I think to myself I cannot handle one more medical professional giving up on me.  Sadly this seemed to be the theme the last several months not only by the medical community but by some friends as well.  He calls my name.  This is it....

After a few questions in his office he tells me to go for a walk down the hall.  Watches me closely, then tells me to go into an exam room.  Does a battery of clinical tests, some of which the other two had done.  However this time is different.  He is asking me to perform movements, checking my balance then asks me to go for a walk again.  My right arm is not swinging only my left.  Something I had noticed months prior it's as if it's dead and hanging.  When I get on the treadmill to walk it bounces off my leg as I increase speed but that's the extent of it's movement.  He then takes me back into his office, asks me to write a sentence, draw a spiral and some other things.  Again things neither other Neuro asked of me.  My handwriting is a mess, my drawings liked like that of my now two year old.  He asks me how long it's been like that.  I tell him I'm not sure that I have been unable to hold a pen to write for quite some time now with ease so I had stopped trying.   We talked a bit, discussed the physiotherapy I'd been doing, the time I've been spending on the treadmill to keep my leg from turning to mush like my arm has been.  The increasing symptoms and difficulty sometimes with daily tasks.  More questions, more movement tests etc...

The long and short of this appointment results in something I was not expecting.  I had at some point despite the clean MRI so far expected to hear the letter's M & S be announced to me.  I knew a lot of people with the disease that had clean MRI's at first.  I was prepared for that diagnosis.  I had an association with it.... I knew I would stay healthy and active and combat the disease.  I knew there were great treatments to slow progression.  I knew it would be ok.

What I did not know anything about however, was Parkinson's Disease.... 'What did he just say?'  went through my head.  An instant response to him first was "Thank you for not telling me I'm crazy".  To which he gave a gentle smile and said, "You are not crazy, there is something very wrong and we will get to the bottom of it.  You have a tremendous amount of signs of having Early Onset Parkinson's Disease.  At this point we call it 'suspected' not 'confirmed'.  You will need to see an expert on the disease to confirm it.  I just so happen to have a colleague here at this hospital that is such expert and I will speak with him, send a note to your family Doctor and we will get you back here as quickly as we can." 

What the hell just happened here????  Is all I can think to myself.

And so begins the journey of finding Joy....

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