Sep 24, 2014

"In fact, Parkinson's has made me a better person, a better husband, father & overall human being" Michael J Fox

Well now, how about that for a statement?  I wonder when I read that where in his process he came to this realization.  I have read his books, it was almost eerie reading the first one 'Lucky Man'.  Some of the first signs he spoke of were things that I had experienced that I didn't always know how to put it into words.  It was as if he was describing it for me.  I often think of his denial of his diagnosis for so long, his constant search for another opinion to dismiss it.  I am thankful I did not go down that road but I can see how easy it would be.  I do believe that this diagnosis for me has it's purpose which is yet to be determined but I wonder when I hear that quote at what point in my life might I hit a stage where I would whole heartedly believe in such a statement? 

It hasn't even been a full week of trying to process things and I'm sure there's a long road ahead yet, but I think overall I'm accepting it fairly well.  After all it wasn't a huge surprise to me and I had months to get used to the idea.  However, that being said I must admit that I am finding it ALOT different to say the words "I have Parkinson's Disease" as opposed to saying I'm being treated for PD.  Not much of a change in that phrase although the two seem to be worlds apart at the same time.  I think however the most difficult part of processing all this is the realization that although I do have hopefully some control over not getting worse too fast I have no control over getting any better.  I had held onto hope that despite that appointment likely leading to this being official that there would be an alternate course of treatment that would further improve upon my ability to complete fine motor related tasks and settle the tremors for more than a 2 hour period.  I am so much better than I was before starting on Levodopa the end of May.  I'm extremely grateful for the fact that I can indeed time doing exercise around my dose kicking in, or time using a pair of scissors or doing a little craft or whatever have you with my kids.  Afterall 4 months ago those things were almost impossible all of the time.  Now I at least have a window of opportunity and I have joy in those windows albeit brief.  However, finding out that I should indeed find joy in those approximate 2 hour periods and continue to do my best to time things appropriately and manage the "off times" as best as possible for an indefinite amount of time was a blow.  I was expecting (although in the back of my mind always hoping otherwise) my PD diagnosis, I was not at all expecting that I would remain in a standstill.  That thought had honestly never crossed my mind.  Of course I had read in my countless hours of research about how often young onset patients will choose to delay any form of treatment at all, in order to ensure it will be effective down the road when it will be much more necessary.  Clearly I was not at liberty to do that, however being told I should not change medications around or increase anything as it could alter it's effectiveness later when things do get worse.  Sadly that is the reality, I can exercise as best my body will allow and hopefully maintain where I am for as long as possible or at least not get worse faster than need be; but it will get worse.  So accepting the fact that bad days aside where I'm often useless that even on good days I will be most likely unable to work.  That my ability to perform many tasks most people take for granted is approximately 6 hours a day, broken into three parts.  Sometime in the vicinity of 8am-10am, 1230-2:30 & again from 5:30-7:30 give or take.  On a really good day I may get more than that, but that would be the average on a 'normal' day.  Don't get me wrong, I did not have those 6 hours before and I am very grateful for them.  But I am also extremely angry that it's the best it's going to be.  How can I expect any employer even the best one to work around those hours.  Essentially able to work 4 hours a day with a 2-3 hour break in between?  So the thoughts of returning to my career without any advances in research/treatment options seems an unattainable goal at the moment and I am angry about that. 

THAT was the one thing I was still holding onto hope for.  After all I left PEI at 17 years old to get an education and build a career.  One I think I was very successful at for a young age, one I was very proud of and enjoyed.  Not to mention the fact that I love being a Mom but having a husband that works on the opposite end of the country meant that going to work was not only often my only social interaction but my only break as well.  Not being able to work is depressing to me and has been for quite some time now.  Knowing I likely may not be able to go back to work at all (or at least in the foreseeable future) feels oddly like a loss in identity.  I understand I have bigger fish to fry right now, being a good mother to my girls and taking care of myself so I can continue to be that for many many years is much more important, but that doesn't necessarily make the loss any easier.  It doesn't ease the sense that I am yet again mourning another loss that PD has taken from me.  But, the reality of it is I need to change my way of thinking.  Because who knows what the future holds as far as options.  One strange realization in the last week for our family has been to change our pre programed way of thinking of the future to focusing on the present.  We spend a lot of time planning out our futures and what we'll do next year, or when our kids are older, or when our children leave the home or when we retire.  Suddenly those thoughts aren't dream worthy anymore in fact they can be down right scary.  So whether it be about work, or whatever have you the mindset must change to simply being joyful and grateful for what blessings we have today and not thinking too far ahead. 

On a side note I must take a moment to say thank you to the countless messages I've received.  Messages that were so very heartfelt and loving and full of beautiful words of encouragement.  In the moments of negativity they truly do come to mind and give me strength and lift me up.  It's incredible what a simple cluster of words can do for a person during a struggle.  I've also been asked a lot of questions in the past week and I do not mind being asked at all.  One piece of advice I'd like to give is to never assume anything about anyone's situation whether it be health related or otherwise.  If you think you know, trust me you don't.  If you read one article about an illness or disease do not assume you know what you're talking about.  Because it's guaranteed that whether it's someone suffering with PD, diabetes, cancer, chronic pain from an injury, or countless other conditions they or the caregivers of those have done countless hours of research and even they are likely not yet an expert.  So although you may be well meaning, don't act like you understand or know what is out there.  Don't get me wrong, educating yourself on such conditions is appreciated by those affected it's a simple process of asking a question instead of coming across like you know what they are going through.  Changing the way you say something can be a big difference.  Ask questions, it makes people feel as though you are engaged, that you truly care and are there as a support system for them.  Saying nothing because one is uncomfortable happens, but acknowledging things can make a big difference for the person going through it, or at least in my experience.   To everyone who wants to ask me a question, go for it... But I warn you don't ask if you don't really want the answer!  Because for anyone that knows me well, knows that I'm not one to sugar coat things I'm a say it like it is kinda gal! ;-)

One question I've been asked a lot is what is the difference between Parkinson's Disease and Young Onset Parkinson's?  Well, actually nothing.  It's still Parkinson's regardless.  Parkinson's disease in simple terms is a degenerative neurological condition where the cells of the brain that produce dopamine die.  It is unknown why this happens but the loss of dopamine is what causes the symptoms of PD and as of yet there is no cure.  Some of the early signs are tremor or shaking, small handwriting, loss of or decrease in sense of smell, trouble sleeping, trouble moving or walking, constipation, masked face (loss of expression), dizziness or fainting, stooping or hunching over.  I have 9 out of 10 of these early symptoms.  There are MANY others as well such as loss of arm swing, muscle rigidity and stiffness etc... which I've experienced, some of which I have had for nearly 10 years.  I am at a point where on a reasonably normal day for me I can still 'hide' my symptoms.  For example if I tense up my muscles I can often force the tremor to stop, although I pay for it later so it's usually not worth it.  As for Young versus not, it simply means diagnosed young.  That is all.  Parkinson's is typically a disease seen in people over 60 and often more noticeable in those people as they may have other health concerns already that make the symptoms worse; where as a younger person to get it is often more physically active and has no other previous health issues and therefore it doesn't appear as severe.  Only about 10% of PD diagnoses are under the age of 50.  I would be this unlucky rare 10%.  I always did need to be unique, go figure!

I've also been asked if I'm scared.  Well of course I am, but like I said earlier I need to change my mindset and think of the joy in the present and not think to far ahead.  That will help alleviate constant feelings of fear.  I've been asked how I'm coping and how I am mentally with all of this.  Well I think I've pretty much summed that up above.  I've never been a secretive person, always been an open book kind of individual.  I don't think there's anything wrong with either type of personality this is just mine.  I don't feel the need to hide or alter the truth and that is part of why I started writing this blog.  This way there is no need for rumors and assumptions because I am simply telling it the way it is.  I have good days and bad days.  I have days where some simple things that should be easy enough for a child to do will make me cry with fear and frustration.  I have days where I'm extra stubborn in compared to usual where my only attitude is 'I'm fine, screw you Parkinsons'.  I have days where I feel like a bag of crap and I'm angry and miserable because of it.  But more importantly I have a lot of days where I think my attitude is upbeat and I feel determined and strong enough to face the challenges and I find the joy in the little things.  Thankfully I think I am in that joyous space in my head more often than the others.  And on the days that I am not in that space I am grateful for those people around me that lift me up, encourage me and give me the push and the strength I need to get over it.  Some of those individuals have unexpectedly come into my life since this journey began, some are old friends I've had forever, some are new friends made recently, some are the people I would have always expected to be there for me as I would them and some that I did expect haven't been.  But regardless it is all part of the journey, all part of the process, all part of finding my new way in my life that had a very unexpected curve ball thrown into it.

And through all this sometimes sad but often joyous roller coaster ride I hope that a day will come where I can say that Parkinson's has infact made me a better person, a better wife, a better mother and a better human being.  Until that day I will just keep swimming!

Sep 19, 2014

The verdict is in... But with knowledge comes power

Well nearly 15 months after this fun little journey of mine started just 3 weeks shy of my 37th birthday it is official.  I am the mother of 6 year old Samantha & nearly 3 year old Izabella, wife of a wonderful husband Aaron who works on the opposite end of the country from us and I have Young Onset Parkinson's Disease.

Holy crap... How did I get to this place?  Well it took 6 visits to my family Doctor, 2 ER trips, 1 ENT appointment, 2 Osteopath appointments, 3 appointments with the Naturopathic Doctor, 2 Bowen treatments, a battery or lab tests, 1 nerve conduction test, 1 emergency cat scan, 2 MRI's, 2 failed Island Neurologist appointments, more massages than I can count, 16 sessions of physiotherapy & three 700km trips to Saint John, NB (one to a regular neurologist & two to the movement disorder neurologist).  Add to that a two page list of symptoms that have slowly been added to the initial ones, a lot of frustration, quite a bit of anger, a tremendous amount of fear and a whole lot of tears.  And after all of that, here I am.  Holy crap I have Parkinson's Disease!

As I sat in the waiting room today in Saint John it was the first time I waited for an important appointment that I didn't feel like I was going to throw up.  I knew in my heart what was going to happen.  I have spent literally so many hours it would be up to weeks of time reading, it all fit, the medication although it wears off after 2 hours worked.  Today wasn't going to be a big surprise.  I know what's going to happen even though it sucks, I know. 
And then..... I watched the woman before me come out of his office.  She only looked to be about 45, small and appeared to have taken care of herself over the years.  As she turned towards me I lost sight of her and all I could see was... her cane...  Yup it was like it was glowing in neon and suddenly she was lost and that's all I saw.  My stomach all of a sudden felt queasy and my mind started to race with questions.  Does she have PD or a different movement disorder?  How old was she when she got it?  How long before she needed a cane?  Am I going to need a cane?  When will that happen to me?  Oh dear... I shook my head to free the random crazy thoughts, swallowed hard and stopped myself from being ridiculous, you don't even know that woman or her circumstances... You know how you hate when people make assumptions about your health so don't do it to this woman.  My stern speech to myself seemed to work.  Then it was my turn in the hot seat... He brought me to his office and we discussed what his Parkinson's nurse had discussed with me over the phone a few weeks ago.  What benefits I'm getting from the Levodopa, how long it works, how long it takes to kick in the first of the day versus other doses and so on.  He checked my rigidity on my hands, looked at my tremor asked a few more questions.  Said he noticed an improvement from the last visit and looked at the clock realizing my meds likely just kicked in.  Then the moment I was waiting for, anxious for and dreaded all at once. 

"Well Natasha, there is without a doubt that you definitely do have Young Onset Parkinson's Disease.  There is no disputing it at this point."  I sigh, not sure if it was relief or not but I think so?  He then went on to tell me about my off periods and how although it's only lasting two hours it's important that I continue to time exercise and hand writing and any of those things I usually cannot do around my meds working and do my best to deal with the "off" periods as they are called with PD.  That given my age and the fact that this is a degenerative disease (yes, that's a scary shit word.  Degenerative... It WILL get worse as time goes on) and that I will most likely be on these types of medication for the rest of my life or better part of it that it's too soon to try and increase or add another med.  The side effects such as Dyskinesia are too real combined with it possibly not working anymore down the road from prolonged use and it's important I prolong any additional medication as long as I can.  He asked if I was still exercising, I told him yes, that I'm still trying my best to run, still horseback riding on the days I can.  His response "Good, keep doing it as much as you can.  If you need to give up other things in order to keep working out do it.  It is your only way of trying to slow the progression of Parkinson's Disease."  You see, some neurological diseases such as MS that are degenerative as well have medications that can slow the progression of the disease.  As of yet, there is no such treatment for PD.  He advised me that recently there have been studies to show that with regular exercise the brain sometimes has the ability to create more dopamine (this is the chemical your brain no longer creates that causes PD).  So for more reasons than one it is important to keep that up as much as I am able to do.  There were some more talks but the long and short of it were to call if my "off" periods start to get worse or unmanageable and then they'll look at another option but hopefully I can manage as is.  I am to see him again in 6 months time.

So, there it is.  I made one phone call only this time.  To my husband.  He didn't answer.  I left him a voice mail that said "well, you are officially married to a woman that has Parkinson's Disease.  But it's ok, at least I finally know."  Gulp.  He called back of course a few minutes later in his worried tone but loving voice none the same.  Asked if I was ok said to drive safely.  The rest of the folks that needed to know or those that were sweet enough to send me texts and messages wishing me luck received a copy and paste of the same text with the just of what happened.  To all of you that did, thank you it truly does make you feel like you're loved and cared about and not alone.  I appreciate every one of them.  Especially the ones I get at random times not just the day of a big appointment to simply check in to see if I'm ok & how I'm feeling.  Because those are the ones that you know really care.

I did not cry this time.  There was a well up in my eyes for a brief moment but it didn't last, because the feeling of relief of not being in limbo anymore and knowing I now have the power to gain more knowledge and research my options now.  Something I was powerless to do before today.  That is, I did not cry until I was parked to gas up and got a message from my friend Jeannie that as always said the perfect thing I needed to hear in the moment.  One part of which said 'Quote of the day "Hope is faith holding out its hand in the dark" '.  Among some other sweet words that made the tears flow.  I'm lucky to have people like her in my life and have been blessed to have her and others put in my path along this journey to help lift me up and I am very grateful for all of those people.  You help make this all easier.

As I continued home I admit I had a couple of 'moments'.  I had the Why me? for a bit.  After all I think I'm pretty nice, I try my best to be a good friend to those near me.  I don't steal or cheat or lie, in fact often I'm too honest which can get me into trouble.  I try to help others when they are in need be lending a hand in whatever way I'm able be it big or small.  I try and teach my children to put others first, to be kind and try to live that by example rather than it being a speech.  So why me?  Why can't some jerk that's mean and nasty and cruel have Parkinson's Disease?  I then had the dark moment, thankfully I didn't allow myself to go there for much more than a minute.  But I literally had a flash vision of my daughters wedding and me in a corner with a  walker like a big useless lump.  I told myself I'm way to stubborn for that to happen and that was enough of that foolishness.  I can't let my head go to that space, I won't.

Overall I am truly relieved.  I don't think I could have handled anymore 'unsure' time knowing damn well what is wrong.  Knowing damn well how hard little things can be for me some days.  There are so many options out there for me to look into and now I can.  But, of course I am NOT happy I have Parkinson's disease.  What crazy person would be?  And yes, I'm clean friggin' terrified in fact.  I do not want my body to continue to fail me more and more as time goes on.  I don't want to have to explain this to my kids.  I do not want to have to live life like this.  I do not want any of this.  But the reality is, this is the hand that has been dealt to me.  A new chapter of my life (our lives) begins today and I have to trust that God has a plan or this wouldn't have happened to me.  Maybe this is suppose to be my new way to help people?  Maybe I'm suppose to help other young Mom's (or Dad's) going through this?  Maybe I'm suppose to continue to learn hard ass lessons about myself and my life like have come my way these last 15 months about life and love and friendship.  Right now I do not know the reason and I do not know what the next chapter holds.  All I know is that I have Parkinson's Disease and it sucks but I have to accept It and deal with it in order to fight it and move on.

I have three main loves in my life.  My husband that God directed me to at the exact moment in life he was suppose to, I love him and I am grateful for him every day.  My two beautiful girls who are my world.  And let me tell you right here and right now... I will NOT turn into a puddle of jello because I will continue to be a wife and mom to them.  Making fun memories and living life to the fullest!  That is a promise to them!  But, aside from them I have two other loves (aside from the amazing family & friends in my life).  Well lets call them obsessions to be real! Ha!  Red wine (yup, I'm a wine-o) and my very beautiful, very tall, very large, very colorful high heel collection.  And let me tell you another thing.  I will continue to run (even though I don't do it well) and I will continue to horseback ride and I will continue to stay as active as my body will permit not only because I refuse to turn into a puddle of jello but because I refuse to give up those beautiful shoes without a fight.

So tonight I say to you Parkinson's Disease... You picked the wrong chick to screw with... Because I am not or will not go down without one hell of a fight.  So bring it on...

Sep 12, 2014

"There is something about the outside of a horse that is good for the inside of a man" ~ Winston Churchill

There are many forms of therapy that an individual can undergo with many forms of illness.  Some conventional, some not so much.  Part of the frustration of not being officially diagnosed lies with the inability to properly advocate your options for your own care.  There are numerous studies in our region even, such as through the Dalhousie Dept. of Medicine where PD patients can participate to help with more research and in turn possibly a cure.  Clinical trials, Natural treatments, you name it.  So many options that can be explored other than the simple pharmaceutical approach and typical treatments such as Physiotherapy and Occupational Therapy.  Sadly without an official diagnosis a patient is often in limbo and at the mercy of a drug with no real options to explore alternatives until it becomes 'official'.  This is a part of my frustration on this journey, although I am extremely grateful for how far I've come since my initial trip to Saint John in April.  Slowly we are getting there, but confirmation at this point would be a nice thing as strange as that may sound.

I have however taken some control outside of being at the mercy of a drug.  Now don't get me wrong, I'm not opposed to the pharma way if it helps, but it would be nice to have other options as well.  And so far my little yellow friend Levodopa has made parts of my life easier for periods of time and for that I find joy in that part of the journey.  However once I was told at that first appointment in SJ that it was suspected I may have Young Onset Parkinson's, and then that opinion being seconded by the Movement Disorder Neurologist there 6 weeks later I started reading.  A lot.  Read some books, read nearly every article I could online about PD, joined just about every PD network I could through social media and beyond.  There is power in knowledge so I try and saturate my brain with this stuff.  Upon some of that research I stumbled across Equine Therapy or Therapeutic Riding.  This sparked a big interest in me since I have always had a love for horses and did do a bit of riding in my teens.

Wikipedia explains Therapeutic riding like this:
Horses provide a unique neuromuscular stimulation when being ridden through their one of a kind movement. Horses move in a rhythmic motion that mimics the human movement of walking. While riding, the horses stride acts to move the rider's pelvis in the same rotation and side-to-side movement that occurs when walking. The horses adjustable gait promotes riders to constantly adjust the speed to achieve the desired pelvic motion while promoting strength, balance, coordination, flexibility and confidence.
The amount of benefit gained through therapeutic riding differs from person to person based on many factors such as the type of disability, severity of disability, motivation of the rider and connection between horse and rider. Unlike exercise machines that only focus on one muscle group at a time and do not use natural body movements, riding forces the rider to make use of the entire body to steer, control, adjust the horse and maintain balance. Because horses require not only physical skill but also cognitive skill for achievement, riding reveals the strengths and weaknesses of the rider. While most traditional therapeutic techniques often reach a plateau where the patient may lose motivation, the pleasure and excitement of riding acts to encourage patients to work through the pain and discomfort. The act of accomplishing something many able-bodied people are afraid to try is a benefit to those with disabilities in itself.

The physical benefits of Equine Therapy are incredible.  The list includes:
  • Improved balance and muscle strength
  • Improved coordination and faster reflexes
  • Increased muscular control
  • Improved postural control
  • Decreased spasticity
  • Increased range of motion of joints
  • Stretching of tight or spastic muscles
  • Increased endurance and low-level cardiovascular conditioning
  • Stimulates Sensory integration
  • Improved visual-spatial perception
  • Improved gross and fine motor skills

  • Now that all being said/read and being a lover of horses and always wanting to learn to ride English better why wouldn't I want to check this natural option out?  So that's just what I did.  My daughter had been taking riding lessons a while back from Amanda Tweety of Giddy Up Acres located just about 5 minutes from my house.  So I sent her a message asking if she would be interested in taking me on.  She thankfully said yes!

    Now, what's really incredible about Amanda is she knows why I am there.  I am not simply another lesson to her.  She knows that I am there to maintain muscle control in my legs and help my balance.  So my first round of lessons were on a big boy named Roy.  A fairly lazy fellow and as she called it after the fact "a good confidence booster horse".  Of course I did not know at the time that this is why she gave him to me.  As I started to progress, got my mind wrapped around the art of posting and practiced some techniques from years gone by she knew that my body needed a more challenging horse.  So TBone was my next friend.

    Roy, the first guy I was riding!  My sweet little Izabella loves horses and she always enjoys a little walk with Momma on the horsie when my lesson is over!
    Now TBone is a much faster horse than Roy.  But also required more leg strength. Roy was lazy so I would use a stick to get him to trot where as if you used that on TBone he'd be gone up the field likely in a minute, most likely with me left behind on the ground!  Ha!  He however required a squeeze each time you sat back in the saddle from your post to keep him moving.  I went to that first lesson with him excited thinking how easy it was going to be compared to a lazy horse and boy was I wrong.  I learned very quickly that day why Amanda chose to switch me to this horse.  My leg strength was clearly not as good as I thought it was and it was and continues to be quite a challenge for me.  I struggle on bad days with keeping my heels down and legs back in the proper position.  I am however now conscious of my wrong position and therefore focus on those muscles and keeping them where they should be.  It's very much a mental and physical activity and a sweat fest most days.  For anyone that's never ridden and I don't mean a trail ride where you just sit with the horse on auto pilot and have ridden English style you'll know that it is most definitely a form of exercise.  It can be hard work.  But it's particularly hard work with an often uncooperative body.  So for me it serves a double purpose.  Therapy & Exercise combined.  Both very important for my body.
    I've noticed some small changes in the left side of my body whereas so far my issues have been contained to the right.  When I went for my lesson last week I woke up thinking, this is a good body day, I'm going to have a great ride!  Well, it's funny how sometimes you can think it's a good day because perhaps you actually got a little sleep the night before, or your tremor is mild when you wake up, or you're able to move a little easier before you get your morning pill in, or you're not experiencing any major pain.  Until... you try and do something physical.  This was one of those days.  Once I got up on that horse I realized it was not a good body day at all.  While in the saddle I struggled to keep my body still.  My legs were not staying in place and simply did not want to move or do what I was trying to get them to do.  My poor position and moving body confused Tbone which in turn frustrated me.  But I did learn some new techniques on how to maintain control of him on days like that with my reigns, so it was still a great lesson.  But when I got off him I had legs that were like bowls full of jello and I could barely walk. 
    It's clear to me now after nearly 5 months of weekly lessons that there is no doubt in my mind that Therapeutic Riding is beneficial to me in amazing ways.  Both mentally and physically.  It's also clear to me that Amanda is very much a part of my "care team".  Although she may not have a medical background she knows why I'm there, cares that I get the benefit I require out of it and adjusts my lessons accordingly.  On days she can tell I'm struggling to get my body to work the way it should she alters her plan for that lesson to accommodate my body's needs.  On days she sees me mount and can tell it's a good body day, she pushes things a bit more teaching me new things, doing a bit more.  Either way I know in my heart that to her I am not just another riding lesson client.  Not just another client that she goes through the motions of teaching.  I am to her a client that she is flexible with and patient with and understands my needs and my limited abilities, but still pushes me to try new things in a safe manor.  I thoroughly enjoy my lessons even on the days where I leave frustrated and soar because even if my body didn't cooperate that well I love the horses and they make me feel peaceful and comforted and give me a little fun while getting therapy.  It's been a joyful experience for both mind and body and I'm so grateful that I found this option for treatment and that I found the perfect teacher for me.

    "The mind and body are like parallel universes.  Anything that happens in the mental universe, must leave tracks on the physical one" Deepak Chopra

    Sep 8, 2014

    Your goals are the roadmaps that guide you and show you what is possible for your life...

    I think Goals are important for anyone's life.  There's a great quote I read once that says "What you get by achieving your goals is not as important as what you become by achieving your goals".  I think particularly in tough times goals are important.  Last fall I lost sight of goals due to frustrations and I laid on my couch feeling sorry for myself a lot.  That resulted in feeling crappy emotionally, gaining 25 pounds and feeling crappier physically.  Thankfully when the new year hit I made a decision that I had to change that.  Like the saying goes the definition of insanity is doing the same thing over and over and expecting different results.  Well my results with that phase were not good.

    So when the new year hit I vowed that I would get up and moving again.  That I would simply have to alter what exercise looked like for me.  Instead of hard core bootcamps and personal training sessions that once were a ritual I would have to find things that I could do with my uncooperative body.  So I started by hitting my treadmill.  Usually walking but slowly was able to get running a bit.  I started eating better and I stopped laying on the couch.  Thankfully in less than 4 months I lost that 25 pounds and was feeling better.  Still struggling with simple tasks that required my hand and bad days where I was crashing, but at least I wasn't feeling sorry for myself and I was moving, to the best of my 'new' ability.  When the weather got nicer I started biking again, at first it was a challenge as my balance is a bit off, thankfully not as bad as some. 

    I have a silly little chant I have in my head when I'm having a hard time doing any exercise,  On those days where I don't feel like getting up and moving or on the days when I am doing it but struggling hard and want to give up.  I say to myself  "Screw you Parkinsons" and as silly as that sounds it usually gives me a big enough push to keep trying.  Some days I can't do anything but walk on the treadmill, some days are a bit better and I'm able to run a bit.  I have been trying to get to 5k for months now and I still can't do it.  My legs just don't seem to have it in them but I have continued to try.  2k is about my norm but I have hit 3.5 a few times on a good day.  But it's not easy.  I have to focus.  It's not the same as before, I can't just tie up the laces and run.  I have to focus on my stride, on my feet hitting properly and put a lot of thought into it so don't go off balance or tire too much.  It's a mental game as well as a physical one, where as before all my body issues it was a thoughtless thing.

    Yesterday was the PEI Parkinson's Society SuperWalk which happened across the country.  I knew about it a few months ago and was reluctant to register for it or create a team given I hadn't been "officially" diagnosed and was just being treated for YOPD.  But as my levodopa started to make my life a little easier and a couple of chats with my movement disorder neurologists nurse I decided to register.  I did not ask anyone to do it with me, I simply created a team (Team Nat) and posted it on facebook asking for people who might be interested to make a pledge towards the walk or join my team if they so desired.  The love and support from that was truly overwhelming!  A group of friend and family started registering on my team and many people started to make pledges.  I was getting emails almost daily telling me someone had sponsored me, or someone new had joined my team.  It really was heartwarming,  I had set a team goal of $1000 (not even knowing if I'd have a team) and figured that was pretty aggressive, setting a personal goal for $500.  I'm thrilled to say that not only was I blessed to have 8 people join me along with my two girls that day, but also to have had 19 people there at the end of the SuperWalk cheering me on.  Let me tell you my emotions were running high and yes I cried when I saw then all.  It was a very emotional experience for me, it's been a long journey and well... it was just emotional.  I can't quite explain it.

    Team Nat!

    I struggled the last few weeks with some added stress in our lives, worse than usual insomnia and in turn a series of days where I was crashing.  My body does not respond well to stress of any kind.  As opposed to stress being typically a mental thing for most, now it is a very physical situation for me.  If I am upset or anything like that you can physically see it in me.  My tremor gets worse, starts from the shoulder down and it's very visible, where as on a 'normal' day I can typically hide it by tightening my muscles.  But during a stressful time that is next to impossible.  Those are the times or just on really bad days when I will sit on my hand to hide it or keep my hand in my pocket.  Why I try and hide it I don't know, but I guess you just do.  Anyways, to get back on track.  When I first registered for the SuperWalk my goal was to run the 3K route that day.  Hopeful that it would be a good body day.  Well the week leading up to it was rough.  Pain in my neck and shoulder that I'm often plagued with was severe, keeping me awake at night even more than usual.  Physiotherapy & acupuncture did not help.  And I was only able to exercise one day that week after not doing anything for the two weeks prior.  I still woke up that morning with the intention that I likely couldn't pull it off that day, but I would at least try.  Even if I could run just 1km at least I could say I gave it a shot.  That typically takes me between 7 and 8.5 minutes to do.  I was blessed to have three friends come that day willing to run with me, at my pace, to walk if I needed to and even had one offer to carry me if I needed it!  Thankfully it did not come to that!  I am proud to say that I did run the SuperWalk.  In fact the four of us from my team that did were the only runners that day, we even sort of got lost on the route.  We ended up doing 3.23km in about 26 minutes.  I needed a couple of walk breaks and the last block I did stop entirely for a minute.  My girls stopped with me and simply asked, what do you want to do?  So, I put my earphones back in with Footloose playing and I started to jog again.  I then shouted out "Screw you Parkinsons" and off we went and finished!  It was awesome. 

    More so because I have struggled so much the last few weeks and this week in particular was rough.  I guess adrenaline is a great thing!  Because as uncooperative as my body was this week, somehow I managed to pull it off.  I have no doubt it was because of those girls jogging with me, encouraging me and the others that were walking as part of my team.  When we were near the end I could hear my sister (my biggest cheerleader in life) cheering and then I saw the big group of supporters and it truly was an overwhelming experience for me that I honestly don't know how to put to words.  I had tears and I shook bad, and was hugged by people that loved me, and congratulated me and I had more tears... and well... it was amazing.  So to that group of 19 people at the end waiting for me THANK YOU.... To the 8 people & my two girls that were part of my team because they wanted to be, not because I asked them THANK YOU... to the three girls who ran with me, one who does run, one of which hasn't been able to run in two years due to a hip problem and another that despises running THANK YOU....  To all the people that I know truly love me whole heartedly, those that have been there for me this entire journey I've been on, those that are genuinely concerned about me, those that call, text or email often to ask how I'm feeling and if I need anything but could not be there yesterday... THANK YOU...  Because of those people and their caring thoughts and hugs and talks I've had with I feel like I am not alone.  Because this journey can be a lonely one, but I am blessed to have a handful of people who I know are there for me, don't judge, don't assume and ask.  And for that I am so grateful.

    And I'm excited to say that I myself raised $810 surpassing my personal goal by $310 and 'Team Nat' raised a total of $1230.00!!!  The Charlottetown SuperWalk raised over $30,000 that day!  And I was proud to be a part of it regardless of what the future may hold for my official diagnosis or not.  Time will tell, I'm off to Saint John again on September 19th, so we'll see what happens then.  But I can say I am no longer nervous, no longer scared.  I simply want things to be finalized, so I can continue to move on to more goals and hopefully more successes, whether they be small or large!

    How can you not be happy with this much love at the finish line?
    The struggle you're in today is developing the strength you need for tomorrow... Don't give up!
    You can find more pics from that day here:

    Sep 3, 2014

    Cherish every moment of your life, it is the greatest journey you will ever take...

    We all know in our logical minds that we should be full of gratitude and cherish our loved ones and each moment we have.  However, do we really do a good job of practicing that?  I think we all intend to, but often life and little things get in the way.  Or we allow ourselves to be down in the dumps for petty things, or sometimes big things when we really should be focusing as much as possible on how lucky we are.

    Two weeks ago tragedy hit our tiny little island, hit our extended family.  Shattered our hearts and the hearts of our loved family.  A senseless death of two of our loved ones, one that there's no way to wrap your head around.  A story that you think only happens in the movies, or maybe a big city.  A scenario that you think is simply a bad nightmare that you're all going to wake up from.  But then reality hits and you realize you're not going to wake up.  Nobody is, because it is real.  It's a tragic and horrifying way to be reminded that we shouldn't take any moment or person in our lives for granted, not even for one second.  Because in the blink of an eye our lives can be changed forever.  A sad realization that we should slow down and enjoy every little thing and moment because tomorrow is not promised.

    I admit I have my days.  Sometimes days of anger of why my body has failed me so young.  Days of frustration when I want to do something that I can't.  Days where I just want to stay in bed because I'm soar, or exhausted or just not having a good day.  Days where I just want to scream.  I do try my best to focus on how blessed I am, how lucky I am to have so many wonderful things in my life.  I try to breath and enjoy the little moments, I think we all do.  However, I know I fail at that often.  Let my mind wander to less grateful thoughts.  Don't we all?  But I think it's important to remember that we are human that is going to happen, but despite any issues I may be having with my broken body, IT COULD be worse.  I am lucky.  I could have a life threatening illness where the possibility of leaving my family behind could hit.  I could be much, much worse off than I am.  As I sit here contemplating this I realize that the tremor that I can literally feel from the inside of my body outward is manageable.  The exhaustion I am feeling from last nights bought of insomnia is not the end of the world.  The sense of being off balance a bit more today than usual could be worse. 

    So today, I say... Love with all your heart.  Forgive not for the person that wronged you but for your own peace so you can move past it.  Realize that sometimes you just have to let it go, even if the outcome is not what your heart longs for, because holding on is too much of a burden.  Tell the people that you care for that you love them, often.  Live your life focusing on the little moments that will become memories.  Take the good with the bad and on those days where you feel defeated focus on what you have to be grateful for and just get through that one day because hopefully if you're lucky you'll have another one to conquer tomorrow.  Be kind to each other.  If you can give someone a hug, or a smile or a kind word do it!  It just may be what that person needs to get through the day because maybe, just maybe they are feeling alone and helpless and that one gesture is what they needed to make it through until tomorrow.  Some days it might be harder than others to focus on these things.  We simply have to remind ourselves that it could always be worse.  That without a doubt no matter how rough a day you are having it's guaranteed that someone out there is having it much harder than you are.

    Be kind.  Love Deeply.  Forgive.  Savour the moments.  Be genuine.  Care about others more than yourself.  Let go of anger.  Make memories.  Be grateful for all you have.  Be honest, not fake.  Love, Love, Love.  And on the bad days, simply focus on the blessings in our lives...
    If we all do this, imagine what an incredible world we will live in?