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?
    xoxoxoxo
     
     
    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?  

    Aug 18, 2014

    "Guilt to Motherhood is like Grapes to Wine" ~ Faye Weldon

    I've often talked about my 'Mom guilt' in my posts.  Well I would be lying if I didn't say it wasn't pretty heavy this past week.  Last week after pretty near 2 days in bed and a couple of physio/acupuncture appointments my 6 year old cried before bed one night.  She again did the same thing today.  A child worrying about adult issues is wrong in so many ways.

    Before I explain more, let me take a step back.  My grandmother sadly passed away in November last year.  She had been plagued with MS for years, was wheelchair bound and near the end was bed ridden.  My kids called her "GG" short for Great Grandmother.  She was an amazing woman and a huge part of our lives.  Her death was the first real death of someone close to her that Samantha had experienced other than when she was a baby and doesn't remember.  She was of course extremely upset when her GG died and we read a lot of books about it and talked about it a lot.  Now, a mother knows their child like none other.  Recently out of the blue Samantha has had brief fits of crying saying she misses GG.  I would console her and explain that we all miss her but that we need to be happy knowing that GG is out of her wheelchair and happy with God in heaven.  I've recently noticed however her moments of this seem to coincide with times Momma is having a bad day.

    Last week when she started to cry about GG, it was day two of me being down and out.  Her Dad at urged me when I got home from my 2nd physio appointment to go outside to see her that she was worried about me.  So when I sat down with her I asked if perhaps she was upset over something else.  She admitted that she was scared and worried about me.  Insert sound of a shattering heart here.... :-(  She went on to explain to me that I was in bed a lot the last couple days and kept going to Doctors appointments and she was worried and scared because I wasn't ok.  So I swallowed the big lump in my throat forced the tears away and tried as best I could to explain to her why.  She knows Mom shakes, she mentions it quite often when she sees it despite my best attempt to clench muscles and keep it hidden from her.  So I simply explained to her that sometimes because of the thing Mom has that causes her to shake it makes my body soar and sometimes I need to go for appointments to people like massages to help me not be soar.  To help me feel better so I can fix it up quickly and get back to fun playtime with her.  I explained as best I could that I am fine, that there is nothing for her to worry about, that I'm not going anywhere.  Hardest conversation ever...  but by the end of it she seemed content with the explanation and we finished it off with a laughter filled tickle fight to lighten the mood.

    Since that day thankfully I've been back on the upswing of better days.  This morning however out of the blue she came to me, tears in eyes again crying over GG.... I did my usual explanation over it's ok to miss her we all do but she's happy in heaven and we need to be happy for her.  I asked what else was bothering her, explained that often when she's upset over that something else is 'also' bothering her.  She simply cried and said "I'm sad cause I miss GG and I'm worried about you"  I think to myself, 'dear Lord give me strength'.... So on we go for another chat.  This time we talk about how when she has a soar throat or something we often go to the doctor to get some medicine to make her feel better, and how Momma has been going to New Brunswick to that Doctor who is giving me medicine to make me feel better.  And how sometimes we have things wrong with us like a soar throat or an ear infection and it doesn't mean anything bad will happen we just need time and medicine to feel better.  Assured her that I am not going anywhere, that just sometimes Momma needs some rest time so I can get the soar parts fixed and get back to the fun stuff again.  After a chat that was likely 5 minutes but felt like an eternity we simply cuddled for a while.  I asked if she was ok and understood and wasn't worried and she said yes.  So back came the tickle fight for laughs again....



    Being a Mom is HARD.... It's especially hard when you have something like this to deal with.  When you try your best to put your game face on and hide the bad things but sometimes you just don't.  So the Mom guilt is pretty heavy right now.  I find myself thinking that I'm doing a bad job of hiding it.  That clearly I need to try harder.  It was easier when school was in as I could rest when the babes was napping and laze around if needed on a particular day and she was in school so she didn't notice any of it.  Then these situations of guilt make me also think of the people who are always commenting about how busy I am, how 'on the go' I always am and make me feel as though they think I'm full of crap.  Make me feel as though I shouldn't go anywhere, do anything fun and I certainly shouldn't try and look good.  The people that think because I dress nice and do my hair that nothing is wrong.  The people with the really bad assumptions because all they see of me is my 'game face' days... Maybe they should hang out at my house on a bad day, maybe they should be the ones to sit and have this type of conversation with a 6 year old that you try your hardest to hide the bad from but clearly aren't doing so great at it.  Maybe they should see the heartache in her poor little face and feel the guilt weighing down my chest like a cement block sitting on it in those moments...  Maybe then they would understand why on my good days I'm 'on the go' and doing my best to have enjoyable days of fun.  Or maybe I should just do what I typically try and do and ignore it because I know my own truth and that should be all that matters.  Sometimes harder than you would think however. 

    I love my girls like nothing else in this world.  I will always do my best to love and comfort them.  I will continue to keep the bad days to a minimum, hide it as best I can and get up, stand tall, look as pretty as I can and make memories on the good days.  Bask in the joy of the smiles in my girls and not take any moments for granted.  Because those moments of joy outweigh the days of guilt and thank God for that...

    Aug 13, 2014

    The vicious cycle

    I'm not sure at which point in the cycle it starts and ends because once it's going it's a bit like a snowball that's simply getting bigger and bigger.  Eventually and thankfully it breaks apart never really knowing where it begun or ended.  That's the best way to explain the 'off' days and the vicious cycle I often experience.

    It may start with the tremors and your many muscles constantly being active which causes others to be tired and then in turn hurt.  It may start with the insomnia which leads to exhaustion which causes the tremors to be worse which causes your body to not have it's time to heal and in turn causes pain.  Where it starts I don't really know but when it starts each problem seems to get worse and snowball.  Sleep is at a premium often I can't sleep for no good reason at all, sometimes I can't sleep because my body is twitching and keeping me up.  But when you don't sleep the tremor usually gets worse as it is affected by exhaustion, stress, over exertion etc... Who knows why there's pain, could be lack of sleep, tremors or many other things.  In researching I've found that insomnia is a huge factor in PD and pain is often a very common complaint in PD patients as well that was often overlooked.  Some studies suggest up to 80% of PD patients have it.  But when the pain in my shoulder and often neck hits it makes sleeping even more difficult.  Hence the vicious cycle of unknown origin.  All I know is when they hit it kicks my ass.  I usually end up in bed a lot and frantically on the phone trying to get no notice appointments for things that help such as massage, physiotherapy, acupuncture etc... I'm learning that I cannot rely on a small 'care team' as they often call it.  That I need to have multiple physiotherapists and massage therapists in my rolodex that I can go to.  Because one never knows when I'll need such services and therefore pre booking appointments is not always possible.

    I was in such a scenario this week.  In pain, exhausted, shaky and pretty much useless all while trying to get appointments for much needed therapies.  What started this round?  Who knows.  Could be still lingering from the 'paint day experience' from my last post.  As I rushed for 2 massages 3 days apart to try and ease the starts of a cycle then.  Could be from camping last week with the family and sleeping on an air mattress and simply being overtired from the fun.  Or it could simply be for no good reason at all, just because it happens.  Who knows?  Regardless, if it were one of those things and despite the agony experienced now it was worth it.  Because they were joyful events and moments that I wouldn't trade even if I knew what was to happen as a result. 

    I think the 'off' periods and such viscous cycles are important in a sense.  It reminds you to really savour every moment of the 'on' days and to be joyful in every little moment that you're feeling good.  To bask in that glory and soak it all up.  But it can also be a bad thing because often I think you want to find such joy and happiness on those good days that perhaps you push too much to do too much and cram too much in before the next low because it will happen again and maybe that adds to it's severity.

    At the end of the day there's no real answers.  You learn as time goes on how to manage off times whatever they may be.  You learn to cope with them, you learn to be happy for the good days and you get little pieces of new information that may help you tie it all together.  Might help you link the pieces and figure out what makes what worse.  What causes the next part of the stage to come or get worse or go away.  But it's also often still a guessing game.  One that can be frustrating, upsetting and put you down in the dumps.  But what I'm learning is most important is to remember on those 'off' days that the 'on' ones will be back again and focus on the joy from behind and that's to come in days ahead and to just keep on swimming.

    Thankfully after a couple of days of whirlpool baths, heating pads, a day wasted in bed, the usual guilt that comes with that and two days of physiotherapy & acupuncture I'm on the upswing again to 'on' days.  The upswing of the good cycle again as opposed to the vicious one. 

    And on that note, here's hoping on September 7th it's an 'on' day, as I've decided to participate in the PEI Parkinson's Society SuperWalk to raise money for Parkinson's.  Although I'm still on the suspected list and not officially diagnosed I certainly feel a connection to it already for obvious reasons.  So I felt it was important to participate.  If you would like to support me in this you're welcome to make a pledge.  Or better yet, if you'd like to participate in the walk with me and join my team, even better!  I'd love the support.  There's a 1, 2 & 3k option and if I'm having a happy body day I am hoping I can possibly run all or at least some of the 3k, so some team mates for motivation would be greatly appreciated!  To donate a pledge or join my team you can visit the link below & thank you!
    http://donate.parkinson.ca/site/TR/SuperWalk2014/MR_superwalk?px=1025204&pg=personal&fr_id=1169

    Aug 4, 2014

    "Time is really the only capital that any human being has, and the only thing he can't afford to lose" ~ Thomas Edison

    It's really quite amazing how a month which in the moment seems to be such a short yet long amount of time can ever so quickly turn into a year in the blink of an eye.  We often take time for granted in busy lives trying to cram it all in, often missing precious simple moments without even thinking twice.  I've learned as yet another 'anniversary' hits not to take time or many other things for granted.  Or perhaps I'll say I'm 'learning'.

    One year ago tomorrow my dizziness and vertigo along with tremors and had gotten so bad, medications did not help, nor did Natural treatments that my family Doctor put me off work for "a month".  A simple month to figure things out and give it time to go away.  A month to try and get me into a neurologist and an ENT to see what was going on.  It's really quite hard to believe that this one little month of being off work has turned into a year.  How is it possible that a healthy 36 year old wife & mother of two could hit a point of being unable to work?  I really didn't put much thought into it at the time.  As I really thought I'd be back to work in September at the latest, no biggie.  But as each month passed and more issues hit my breaking body it became clear that this month was going to be the longest month ever.  Already 12 times longer than the average month, I often find myself wondering when this long, long month will be over.  I love my job, I love my children but I have always loved having a career.  I miss it terribly.

    Since being on the full dose of the Parkinson medication Levodopa I have seen improvements as I've spoken of before.  Mostly in the area of stiffness and not being so slow to get going and some in the fine motor skills department.  That has been a pleasant thing given the challenges I've faced and I'm am grateful for those little positive changes.  I find joy in those little abilities even if they are only for short periods of time.  And then, I'll hit a moment where I convince myself I'm getting better and I can do something I once could with ease.  I call it body amnesia.  I tell myself the meds have been working and I haven't tried something in a while so I can do this if I time it right.  And then in that moment of attempting it I often get a huge reality slap in the face... This past week I got one of those dreaded reality checks.  My daughter Samantha turned 6, she wanted a bedroom makeover for her birthday.  I love to decorate and come up with a vision for a room and bring it all together.  Love to paint and match colours etc... So I thought I have two months I can do this.  I picked at little projects for weeks upon end, giving my body time to do a task and then rest from it.  Mostly giving myself time to hit a wall on a bad day where I had to stop and try again another time without the panic of time going by too quickly and not having it done.  I got this one!  I found joy in a few days where I was able to hold a paint roller to paint a dresser.  This is exciting, I can do this!  A few days I struggled and brushed it off that I didn't time it with my meds right, it was ok.  I'd try again tomorrow.  Then came the day before her birthday and paint day.  I prepped the night before so I had little do to day of other than paint.  Turned my husband's offer to paint for me down.  I had a plan.  I'll wake up, take my meds, sit and relax with a coffee for a while for it to kick in and then I'll get at it.  The time had come and off I went.  This is going to be awesome, I'm going to accomplish something big given the year I've had!  Well I won't bore you with the details of that day, lets just say I could not have been more wrong.  My bubble didn't just burst it exploded in my face.  I could not balance on a ladder, I could not hold the brush steadily enough to cut in, I could not do it.  But by the time I realized I could not do it I was so pissed off I was refusing to admit defeat and I pushed on.  Well it ended up in a mess of walls that looked horrific, a split gallon of paint and my husband hugging me while I cried.  Him offering to do some sanding, fix the mess and finish it for me and while he did so I simply hugged him, cried and said "it's not the point, I don't want you to do this, I want to be able to do this, it shouldn't be this damn hard".  But it was.  Pretty near impossible in fact.  It's the first time in a while that I've tried to push myself to do something and been very quickly reminded that meds or not I am not capable of doing simple things I once took for granted anymore, and I don't know if I ever will be.  In the end, my hubby saved the day, he sanded off some really big messes in the paint and finished it off... I then did the fun part of putting everything in place the following day and the surprise makeover in the end was a huge success with a very happy girl.

    I paid for that stubborn attempt at doing something a normal body could do for days upon days.  It's like my body wants the pain and agony I've wreaked on it to linger long enough that I'll clue in to it's cues and say 'ok body I get it, I can't do stuff like that'.  My body wanted the pain, shaking and agony to last long enough so I would realize that I cannot get time back once it's gone by.  That if I want to choose to do things outside of my current ability I will lose that time while attempting to 'recover' and not get it back when I'm suffering.  I'd like to say I get it, that I won't do it again.  And I have come to terms with the fact I only have so much steam in me.  Which is why my housework has gone to crap because I need to exercise to keep my body strong and my children need their Momma for memory making and I can't pull off all three.  But there are still times where supermom persona comes out and I think I can do more, just one time.  I suspect that this will not be the last time for this type of scenario as time has a funny way of making us 'forgetful'.  Enough of it passes by that you think well I was bad then but I'm better now I could likely do more.  I guess we call these lessons learned over and over.


    Despite the agony, despite the pain after, despite the frustration, despite the meltdown and crying it was still very joyful to see my girl so overwhelmed and happy with her new beautiful room (thanks to Aaron's help).

     

    Time can make you miss a lot.  I miss the ability to do certain tasks with ease that I once took for granted.  There are people that were once active parts of my life that aren't so much anymore that I miss terribly, more than words could express.  I miss working, I loved my job and have always taken pride in the career I've built for myself over the years and I miss it terribly & the amazing people I worked with.  But one thing I refuse to let time have me miss is memory making with my family.  My children deserve to have memories of good times with a fun Momma, not memories of a Mom laying around in bed useless.  Of course there are days I have like that but I try to keep them at a minimum.  I will continue to find joy in the simple things in life, like beautiful beaches in PEI where my kids laugh and play and have fun where their memories include me but I can also be lazy there (it's like an illusion memory for them lol).  Like the camping trip our family is about to go on this week in Nova Scotia with dear friends.  I will not let time take away all the joy.  I will continue to push myself to excercise and keep my body strong.  I will continue to memory make.  I will continue to 'try' to do things that used to be much easier even if it pains me.  I will continue to be the best Momma I can possibly be.  I will continue to try.  I will still have days like I did last week where I feel defeated and have a poor me moment, but I will get back up and I will not give up.  And I will find joy in the lessons I'm learning along the way, good bad and otherwise.


    And on one last note... When I started writing this blog I didn't even share it.  I did it simply for my own therapeutic reasons to get things off my chest  One day I decided that maybe it night help someone else understand things better.  Or maybe it night help someone else struggling with a health problem.  Well last week I received an email from a woman named Lainie in Oklahoma.  She said she read my blog and that she as well is starting treatment now for Young Onset Parkinson's disease in order to diagnose.  She went through the Wilson's testing etc... all a similar story to mine.  She reached out to tell me that it really touched her and made her feel as though she's not 'alone' and kindly offered her prayers.  I have to say it was humbling getting her note and uplifting at the same time.  I'm happy if my writing can help someone else in any way shape or form.  But know this Lainie, I know the alone feeling.  As much as we may have love and support which I'm lucky to have by many, it's still a journey that you truly do take alone.  One that can make you feel sad, lonely and empty by times.  A journey that nobody can truly understand without going through it.  Whatever 'it' may be for that person.  So your note to me did the same as what reading the posts did for you.  It also made me feel like I'm not 'alone'.  So thank you for reaching out, we are not alone!  Let us find the comfort in each others struggles and find the joy along the journey!

    Jul 12, 2014

    All good things come in yellow

    Yellow has always been my favorite colour.  It's bright and cheery.  It seems like a fun colour to me.  Many beautiful and wonderful things come in yellow.  It's a colour that has always made me happy if I wear it, paint it on a wall, find a great pair of heels in it.  It's just a great colour that makes me feel happy because I think it's a happy shade of the rainbow.  Most recently I've found myself wondering if one can find joy in the colour yellow for something unusual?  A little yellow pill perhaps?  My levodopa is yellow and at first when I started taking it I hated it.  But as time goes on my attitude about that is changing.

    First of all, I hate pills of any kind.  I have never been one to take even so much as an Advil unless I absolutely have to and nothing else has worked.  I'm not an all out health hippy or anything, but I do believe our society as a whole relies far too much on a pill to fix everything and anything.  Parents rush their children to an walk in clinic the moment they have a sniffle, adults rush to the Doctor for a miracle pill for whatever ails them.  Don't get me wrong there are times we all need a pill of some sort to fix things, but I think generally we are becoming too dependent on the quick fixes of such.  People are becoming immune to antibiotics and super bugs are being formed because they are antibiotic resistant.  These things should tell us something.  I have an amazing family Doctor that I trust and if he thinks I should take something I will, so don't get me wrong I'm not opposed.  But I also have an amazing Naturopathic Doctor who often has wonderful solutions to things outside of western medicine and the need for a pharmaceutical.  I was put on a couple of neurological meds in the initial months of my health issues when they were still trying to figure things out.  Both rounds of meds were nasty.  The first I wasn't even able to function, let alone be a mother with a husband that works away for weeks at a time.  The second I tolerated a bit better but it still had some pretty nasty side effects and most importantly I wasn't being treated for the right thing, so it had no benefit to my issues.

    So to say I was reluctant to start taking the new 'little yellow pill" when the Parkinson's Neurologist talked to me about it would be an understatement.  Sadly in order to be properly diagnosed it was a necessary evil, as its commun particularly in young onset patients to diagnosed based on treatment working.  So, after doing as much reading on it as I could I popped that first little yellow pill.  I certainly did not see beauty in it like I typically do in the colour yellow, especially in the beginning with the nausea and stoned feelings.  However, I will admit that now that I have started on the full dose after 6 weeks of slow increasing of doses and my body has adjusted I am starting to feel as though perhaps there is some joy in my new little yellow friend.  Not 24/7 joy but periods of time.  Particuarly an hour or so after taking one my tremor seems to ease off (I've even had a couple of days it was gone for a couple of hours entirely, despite the neurologist telling me it likely wouldn't help the tremor) and I'm able to hold a pen to write a note, or do some fine motor tasks with much less frustration than before.  That along with the slowness and stiffness in moving particularly after sitting for long periods is much better.  So, perhaps despite my hate for pills, maybe this ones worth liking.  I hope not forever, but for the moment, for now.

    I hear quite often things like "you're so busy, always on the go" or "you look really great, you don't look like your sick" and many other such statements.  At first hearing these things really irritated me.  My thought process was this... So I'm having health problems, I'm sadly unable to work because of them.  So does this translate to people that IF I leave the house I should only do so in a ratty old pair of sweats, not do my hair or makeup and make sure I look the way I feel, which is often crappy?  Am I suppose to sit around the house with a 6 year old and a 2.5 year old and not let my children have any fun?  To these types of statements my feelings on them are this. 

    1.  Just because you do not feel great, it does not mean you should look it too. 
    2.  If you look pretty (or wear a rockin' pair of heels) you will feel pretty and in turn better to an extent at least.
    3.  Confidence and courage to endure a crap day can often be found in looking good and getting a compliment.
    4.  I refuse to walk out my door in a pair of pj pants, or wear sweats everyday just because my body does not cooperate.  It is not me, and I will not do it. 
    5.  IF the day comes where you see me dressed frumpy and never wearing heels anymore that is the day my friends and family should worry... because that is the day I officially gave up... and I do not plan on doing that...
    6.  I have a 6 year old and a 2.5 year old I am a MOM FIRST... They come first.  Their needs, their hopes, their dreams, their desires, their happiness comes first and ALWAYS will.  Any of my health issues or uncooperative body parts come second to them.  No matter what.
    7.  I will make sure my children have great childhood memories that include a mother that played with them, had fun with them and took them to gain new experiences and memories if it kills me.  If I pay for it dearly which often I do, so be it.  They deserve that and I refuse to let my body deny them of that.

    Don't get me wrong.  Most of those comments and statements I hear are completely just compliments, which I appreciate so very much.  If you haven't complimented someone yet today you really should.  Sometimes you just don't know what that person may have going on in their life that day and a simple, kind gesture or compliment might just be what they need to get through the rest of the day.  Be kind, be sensitive and genuine to everyone. 

    So after that little rant Ha! Ha!  I guess my point to all of that is that in my journey of finding joy I'm sometimes finding joy in the most unexpected places.  Like in the little yellow pill.  I've found in the last couple of weeks I'm able to do a little more.  I'm not back to my old self by any means.  But I'm able to do a craft with my kids provided I time it right with my little yellow friend entering my system.  So it's something to be grateful for.  I also find tremendous joy in that bright yellow beautiful sun that summer brings.  Vitamin D is a huge and very beneficial thing for anyones health but particularly in sufferers of neurological conditions such as MS, Parkinsons and many other health problems.  So there's no doubt that you get an automatic pick me up or energy boost from that beautiful yellow thing in the sky.  I also find joy in the fact that we live on an Island surrounded by beautiful beaches.  Where even on a bad body day I can take my girls to one and literally sit on my butt and do nothing all day long while they play happily for hours on end.  They don't realize Mom's not feeling well because they are too busy having fun and I don't need to fight with my body to make it cooperate because I can just sit and do nothing. 


    And how can you not be happy even if you feel crappy with the summer smiles & cuddles of two sweet girls!






    So there is just so much joy to be had in all things yellow.  Even a little yellow pill.



    Jul 2, 2014

    "True happiness is an acceptance of life as it is given to us, with it's diminishment, mystery, uncontrollability, and all" ~ Michael Gellert

    I stumbled across this quote and I have to admit it's a great one.  Acceptance is sometimes a tough pill to swallow, but one can't move forward in life and find any joy or happiness unless we learn to accept any obstacles that have come into our path.

    This week has been a week of acceptance, a week of happiness, a week of Joy.  I have officially been on the Parkinson's medication Levodopa now for a full month.  Still slowly increasing doses once a week and still 2 weeks to go until I'm on the full amount.  (I was told once I was on the full dose for a good 2-4 weeks I would know for sure if it works).  When I first started taking it I was still praying in the back of my mind that the tests for Wilson's disease would come back positive, I would be able to stop taking it and the fear of having PD would be gone.  When those tests came back negative I had some soul searching to do.  After a year of being sick and each month impairments being added to the list and my body getting worse I had to resolve to the fact that I needed to accept.  To accept the fact that when I read up on Young Onset Parkinson's Disease that I do have the majority of the signs and symptoms, it all fits.  That it's not by chance that two neurologists are suspecting it.  Accept that I needed to come to terms with what I wanted out of taking these pills.  About a week and a half ago I finally got there.  I accepted the fact that if this medication works and gives me the ability to move a little easier and to hold a pen and do some fine motor things with less trouble then I would be happy.   I have had so many days on this journey filled with Mom guilt.  Days this past winter when Samantha would beg me to go build a snowman and I just couldn't do it.  Days when she would ask why I didn't build their sledding track in the backyard like past years.  Days where Izabella had to watch movies all day long while I laid on the couch when Samantha was at school.  Days where a 2 & 6 year old can't quite understand why Mom isn't doing the stuff she used to.  Days where Samantha will ask me "Momma, why is your hand shaking so bad?" The guilt is often worse than the health issues.   So I accept that if the meds work and I have PD that's ok cause I just want to feel better and be able to do a craft with my kids and if a pill is what it takes for that to happen along with my push to continue walk, jog, bike and horseback ride then so be it.

    I can say that this past week was by far one of the best weeks I've had in months.  Was I back to the way I used to be?  NO.  Will I ever be?  I don't know but probably not.  However, I have had significant improvement in many areas.  The Movement Disorder Neurologist told me that the PD meds would help primarily with muscle rigidity, so I wouldn't be so stiff after sitting for a while etc... and help improve my hands ability to perform fine motor movements.  He said it would not help the tremor. 

    The first thing I noticed was that if I wanted to sit down and relax, watch some tv or something I did not need to time my sitting.  I was in fact able to simply sit without needing to get up every 10 mins or so to move around so I wouldn't freeze up.  Even when I would before I would be hunched over and felt crippled up until I got up and moving again for a minute, almost shuffling my feet while trying to get going.  It made me feel very old.  I am thrilled to say that I am able to sit for much longer periods of time now and do not feel crippled and hunched when I get up.  Or at least not to the extent as before.

    Then came the side effects, nausea wasn't very pleasant but seems to have subsided thankfully for the most part.  The kind of 'stoned' feeling as each week's increase would hit.  However the BEST side effect happened.  Sleep!  :-)  I had only slept about 2 hours a night, sometimes 4 for at least 6-8 months now.  Twitching, pain and other things kept me from getting much of that.  I am now sleeping.  Not an 8 hour night or anything but averaging 5 or 6 hours, which in comparison is huge!  It's a side effect I know but if there has to be one it's a GREAT one...

    Next I was able to time some little projects.  I have found that if I wait about an hour after taking a dose I seem to be able to handle a pair of scissors, or hold onto things with my right hand easier.  I still can't do it for long periods of time, but I can pull it off for a bit.  I am working on a bedroom makeover for my soon to be 6 year old as that's what she wants for her birthday.  I gave myself two full months to complete little projects and tasks knowing I would find a lot of them difficult to do and would need to do in stages.  Something that normally I would have banged out in a day or two.  But I was able to hold a paint brush and paint a dresser and a shelf last week.  I was able to cut up some cardstock to make name letters for her room.  I was able to use a putty knife to fill some nail holes.  I know this does not seem like a big deal and these do not seem like giant tasks, but to have been able to do these things for me felt almost like a miracle.  It brought me so much joy I don't even quite know how to put it into words.  These simple little tasks have brought me to tears over the past 6 months many times.  I remember trying to use a stapler to put tickets together for a fundraiser back in March and between dropping it and not being able to push it down with ease or hold it I had a 10 minute frustration cry.  There have been many such instances.  So to have been able to time medication with a little project and complete it without either screaming with anger or crying with frustration has been HUGE...

    Overall the week was so great I was so blessed.  My tremor hasn't even been as bad.  Despite him telling me that it would not help the tremor.  I've done some reading and some places say it will help others say it won't.  Part of it may be that I'm getting some sleep, as exhaustion makes the tremor worse.  Dont' get me wrong it's still there and still worse some days, but there are more days of it being manageable.

    Maybe this is all fluke, maybe it's meds working.  All I know is that I've had good body days before, good weeks even and I've had some terrible weeks where it was all I could do to just get out of bed, in fact I had that a couple weeks ago and it reminds you to be grateful for the good body days.  However this past week I was able to do a few things that I could not have done 6 months ago.  I still have to 'time' when I do it, I still have to do them in stages as my hand cramps and tires quickly but I was able to pull off some things that I once took for granted.  It was joyful regardless of why...

    So in my road to acceptance I have come to terms with the fact that IF this medication makes my life better, improves my ability to do things, to be a better Mom and feel less guilty when I'm unable to do certain things with them and in fact leads to an official PD Diagnosis then I am happy & content with that.  Uncertainty is worse.  Not knowing what's causing your problems sucks and without a diagnosis you can't even effectively research ways to improve your own health.  You can't look at alternative therapies or trials, studies, or options.  So if this phase of the journey leads to being officially diagnosed with Parkinson's disease and I have treatment options that make my life easier, better, more manageable and with less 'Mom Guilt' then I will be joyful for that...

    "Joy does not simply happen to us.  We have to choose joy and keep choosing it every day." ~ Henri J.M Nouwen

    I will be joyful in being a better Mom and having more days of fun memory making than I do guilty days where I feel useless and like a bad Mom.  More days like yesterday's Canada Day Fun!

    Jun 25, 2014

    An Anniversary not worth celebrating... or is it?

    A year... Wow...  It's been about a year since that first wave of vertigo hit which started off a whole slew of issues with my body.  In one sense it's hard to believe it's been that long, yet in another particularly on a bad day it feels like my body's been tortured for an eternity.  I suffered through it (the vertigo) for about 5 weeks last year and then it became so bad that I had to stop working.  In fact driving even made me nervous and I only did if I absolutely had to.  I sure as heck wouldn't have through that a year later I'd still be such a mess and I definitely wouldn't have imagined that 11 months later I would still not be back to work.  It's really crazy when I think about it.  But thankfully at least the vertigo went away last fall.

    So yes, it's hard to believe a year has passed.  The anniversary of the beginning.  Sadly things have gotten much worse than that initial day as the months went on and there's still there is no definitive answer on why.  Suspected young onset Parkinson's disease and a summer long treatment plan as a tool to use as a potential diagnosis, but nothing 100%.  However, despite the journey being long there are many things to be grateful for and I guess in a sense worth celebrating as this anniversary comes around.

    First and foremost it seems I am close to my answers being final, whether they are what I would want out of life or not.  Upon talking to many people with serious health issues it's come clear to me that I am lucky with this time frame.  Yup I said the "L" word.  Lucky because a lot of people go many years without being as close to the fork in the road as I have come.  Although somedays it feels like it's really dragging on I am luckier than most.

    I find Joy in the many advocates that have crossed my path on this journey.  Most importantly my family Doctor, who believed in my issues, took them seriously, always tried to make me laugh despite any frustrations, has filled out countless forms and pressed to get me to the right specialists in the right places.  I am forever grateful for him.  I hear many stories of people that are not fortunate enough to have a family Doctor, let alone have one that's remotely as wonderful as mine.  I am lucky.  My physiotherapist who went out of her way to write letters to Health PEI (incase I needed them which thankfully I didn't) to get me off island as it was clear to her I had serious problems that she felt were neuro muscular and needed solving.  A lovely individual named Tonya who's a nurse and reached out to me on several occasions with advice, care and concern and offers to help advocate for me in the journey when I was getting no where fast with Island specialists.  She touched my heart and her loving, caring, genuine nature meant the world to me.  And there are many others from the medical community that have been amazing.

    I've learned many life lessons in the past year about myself and about others.  Lessons help us grow into better people and therefore regardless of the circumstance for it I find joy in those lessons.

    I have learned that sometimes the people you want the most to be there for you just aren't and that's ok because it teaches you how to accept those disapointments.  Makes you find a way to try and put yourself in their shoes and understand that maybe it just makes them uncomfortable because they don't know what to do or say and that is ok too.  I've learned to not be angry at that but rather try and empathize with it and I will admit I'm still trying to learn that art.  We'll call it a lesson in progress!  I've learned that there are people who just don't give a crap, but yet want to read up on my 'news' but have yet to acknowledge what's been happening despite that they are people that should and that is also totally ok.  Those disapointments and figuring out who really cares sends you on a path to surprises.  A path to the ones that are really there for you that it was never expected and that's a beautiful surprise to get.  I've learned I have a wonderful loving support system and family & friends that check on me often daily and do it because they love me and want to and I'm grateful for all of them.  I've learned that there are many people I have crossed paths with that are beautiful people with many words of wisdom that I can learn from and in turn grow because of.  Some are people I know well and others not as much, but they have been put in my path for a reason.  I've learned that sometimes the most unexpected act of kindness can be very emotional and that it's ok to not be the tough girl who never cries like I once was.  I've learned that everyone has an "Internal Doctor' in them in one way or another.  Sometimes this can be good, sometimes annoying and sometimes just plain ridiculous, but it's usually meant with good intentions and often found with great ideas.  So there's joy in everyone's 'ID attitude'!  I've learned patience.  Boy have I learned patience and most definitely a skill I'm still trying to master as this journey has been a true test to ones patience level in more ways than I can count. 

    Most importantly I've learned to find the joy in each day even on the bad ones.  To dig deep and search to find that one positive thing in the day that made that day .  To look forward to the next one to come with a positive attitude that it will be a good one where I can do more.

    And on a side note this week I had an Anniversary that doesn't require thought to celebrate!  My wedding anniversary to my very own Prince Wesley (my favorite movie is the Princess Bride).  7 years married, 8.5 together and not a doubt in my mind that my life before him led me to the very specific time and place I needed to be to end up with him for the rest of my life.  This journey of mine would be a lot harder to find joy in if it weren't for him.


    So at the end of the day there are many reasons to celebrate this health (or lack there of) 'anniversary' like you would any other.  As this time of year was approaching and I was reflecting on my thoughts of how long it has been I thought otherwise.  However the more thought I put into it the more I realized that in life you can wallow in your own self pitty and hate the bad roads or you can find the lesson's in them, look for the joy along that road and better yourself for it.  Don't get me wrong I have days where I'm just plain pissed off, but I am learning to roll over those rocks until I find the flower underneath one that's not giving up so I can try and shed some sunlight on it so it'll flourish.  Have I mastered this art?  Absolutely not.  For instance even as I write this my left arm has been twitching uncontrollably for over 24 hours now.  This scares me because I worry that things are moving to the other side when everything has been contained to the right so far.  But my right hand is working fairly well today, in fact I was even able to use a pair of scissors.  So as silly as that may seem that's a joyful thing.  It's something I often cannot do.  The little things we take for granted that I now wish I hadn't before.  All part of the lesson I suppose. 
    However there are enough positives, enough joyful things, enough gratifying lessons, enough love and support from the people I need it from that have come my way in the last year that it IS an anniversary worth celebrating.  Not to celebrate the illness, but to celebrate the lessons, the love, the little things and the ability to still find the joy in all of it.

    I have joy, I am blessed, I am lucky.

    Jun 18, 2014

    Some days just suck...

    Aint that the truth?  And the case for all of us...

    Today is one of those days for me, it just sucks.  I'm feeling incredibly nauseous, like the kind of nausea you have when you have pregnancy morning sickness where you don't know if you want to barf or eat a cracker dipped in gingerale.  I'm feeling a bit 'stoned' as well which is an unpleasant feeling.  I know the meds are the culprit of both, most likely this weeks most recent dose increase but it still sucks.  It's also a very shaky day and my right leg is vibrating much more than usual since this new body part has been added to the tremor list.  In fact I went to leave the house today sporting as always a pretty pair of heels (those that know me know I love my heels, I think in my mind I was really meant to be 5'8" not 5'4") but I had not much luck.  For the first time on this journey I put them on, walked through the house, got the baby in the car and quickly realized my legs could not pull of heels today.  I know, some of you are thinking how trivial of a thing.  But it is not trivial to me.  It's not about my obsession, my love of pretty heels, it's about the fact that for the first time I put a pair on and realized it was a bad idea and had to take them off.  The first time I've felt defeated by my legs.  The first time I've felt like 'uh oh, is how bad my arm is moving downwards?'.  To me, this is not a trivial thing, it scares me.

    I've struggled this week with exercise, been telling myself it's not big deal just a bad week, when the reality in my brain says the more often one tries to run, bike etc... the better they get at it, the farther they can go, or faster they can do it, that's why they call such things training.  This week however I seem to have gone backwards and my legs can do less.  Again I keep telling myself it's just a bad leg week, just like the many bad arm weeks I've had.  Until I couldn't pull off the heels, then my mind races to a place I don't often let it go.  To a place of fear that my often useless arm is now going to becoming as well my now useless leg.  But, despite that I will continue to tell myself 'it's probably just a bad leg week' and move on to the next day.  And tomorrow I will run, or walk or bike again.

    So with nausea, feeling stoned and foggy, being exhausted, shaking badly and not being able to wear a pair of heels... today just kinda sucks.  BUT I know myself that even on days that suck there are moments of joy to be found in them, sometimes you just have to look a little harder to find them, or sometimes you need someone else to show you the way to the joy.  Today it was the friend that did that by a very sweet, thoughtful caring text message right at the moment I needed it.  It made me cry (no joy in that LOL) but the words had a push to keep on pushing.  The words had joy in them.  Included in those many joyful words was a quote she read and forwarded along with the rest that I particularly needed to hear today. 

    "Toughness is in the soul and the spirit, not in the muscles."

    I also found joy in some 'me' time.  I had a hair appointment booked and despite the fact that I could have easily stayed in my pj's and not left the house I went.  So I found joy in getting pampered a bit while my parents watched Izzy for a couple hours.  I look better, I feel better.  Mind over matter right?

    The end point I guess is this.  There are days when I would much rather crawl back under the covers cause it's just a crap day and I know from the start how it's likely going to play out.  But the fact of the matter is I am a MOM first and I have health problems second.  There are two sweet girls that need a Mom to take care of them (even if my almost 6 year old thinks she can do everything for herself) and they do and always will come first regardless of what kind of curve ball my body might be throwing at me.  And I am happy to push through for them on those kinda days because they are amazing and they are joyful and my love for them makes everything better.  AND even on a day that just plain sucks, there are moments that come your way to bring you joy.  Even if you can't find it yourself and need someone else to show it to you, or you have to look really really hard.  It's still always there if you are open to finding it.

    Jun 10, 2014

    Twas the night before... Diagnosis?

    Well tomorrow's the big day... As I sit in a hotel room in Moncton my mind is racing (well to be honest it has been all week). 

    My husband and I dropped off our youngest Izabella in Montague at my Mom & Step Dad's today and then picked our big girl Samantha up from school and dropped her off at my step Mom's before driving to Moncton to spend the night so we wouldn't have as early as a morning departure to Saint John tomorrow to determine my 'fate'.

    I'm trying my best to find the joy among the fear today especially.  Enjoying alone time with my hubby which is rare for us.  We did some shopping, checked into a nice hotel and went for a lovely dinner at a nice Italian Restaurant and had some laughs.  But to be honest my mind is drifting often in between the 'joy' moments. But I am grateful my husband is home right now and is by my side.

    I have come to the conclusion that no matter what the outcome is tomorrow it's going to suck.  IF I'm diagnosed tomorrow with Parkinson's Disease that sucks.  Sucks the big one.  It's scary as hell...   But if I'm not diagnosed with Parkinson's that sucks too, cause I'll be back to square one all over again.  Back to a place where I know something is screwing up my body but no idea of what and therefore no treatment options.  So, tomorrow sucks.  No matter how you look at it, it just sucks.

    So I shall find the joy in my glass of wine
     make an honest attempt to get some form of sleep (which is rare for me at the best of times, let along this week) and say a prayer that tomorrow has a definitive answer.  A diagnosis for the turmoil my body has been increasingly going through.  A start of a new chapter where I can deal with things as opposed to wishing I knew what was causing them.  No mater how I try and spin it though, I am clean terrified...
     
    Until tomorrow....

    Negative

    I'd be lying if I didn't say that I was remaining silently hopeful that perhaps my tests for Wilson's Disease would come back positive.  Odd to be hoping for a diagnosis of a neurological condition, however it was the lesser of two evils.  Treatment would mean that the disease would never progress any further than where it had, unlike all other conditions that are degenerative.  However, that is not the case for my journey.  I received notice today that my copper levels were normal and therefore Wilson's disease has been ruled out.

    So, I shall carry on with my Parkinson's treatment plan over the course of the next two months.  After a bad first week of remembering the meds I now have a system down and yesterday started on the 2nd dose increase of many yet to come.  Has it worked?  Not yet, but they advised me that once at the full dose for about 2 weeks I should know if it's working.  At this point in time it looks as though I have two possible outcomes.  An official Parkinson's diagnosis, or further unknown territory and to be perfectly honest out of those two scenario's the unknown territory seems more frightening.  Sounds rather odd doesn't it?  Don't get me wrong I certainly do not want to have Parkinson's disease, however there is something causing my body to break down and not cooperate.  Something causing what can sometimes be violent tremors.  There is something causing me to have extreme difficulty with fine motor skills among many other issues and having everything ruled out and then having this treatment not work would mean I'm back to square one.  Back to a world of frustration of not knowing why and still getting worse.  So at this point in my journey now that Wilson's has been ruled out I pray that the medication works.  That it provides me with some relief and periods where I'm able to hold a pen and write a note among many other things.  Thankfully at this point in time I still have more good days than I do bad ones, so I find joy in those good days.

     
     
    All and all I am blessed.  I have many things despite my health issues to be joyful for.  My two beautiful daughters, a loving husband, family & friends I love that support me and a wonderful Church family that does the same.  A wonderful family Doctor & now a great specialist in NB.
     
    As I said last week in a facebook post, that in the recent week with so many suffering such great loss like the three fallen RCMP officers in Moncton a family, a community and a country mourning such a great loss, any of my troubles seem very minor.  So today as I'm about to watch the funeral service for these men I pray for their families to have strength to get through so they themselves can find joy in their memories.
     
    

    Jun 2, 2014

    Even I have to admit some days it's harder to find the joy than others...

    I am still impatiently waiting for the results of my testing for Wilson's Disease, my Doctors office assures me they will let me know either way.

    I also now have a week under my belt on the Parkinson's med's.  Well the first round of minimal dosing.  I'm struggling with remembering to take them (I don't even take a Tylenol) and I have reminders set on my phone etc... but I have to say I've missed a couple.  I think I have a new system a bit better sorted to try and fix that from happening.  Increases are suppose to gradually happen every week for about 7 weeks before I'm on the proper amount to see if it works.  I hate pills. 

    As the title reads it is sometimes harder to find the joy.  For instance this past Friday was a great day.  I felt great, my tremors were at a minimal, I had gotten some sleep, heck I even pulled off a 14k bike ride Friday morning followed by some outdoor fun with the family.  And then the weekend hit.  The days where I am thrown a curve ball and reminded just how bad the bad days can be.  I started my Saturday by attempting a short jog which I've done many times only to end up frustrated and annoyed because my body was just not cooperating.  I was a mess, shaking like a crazy person both arm and leg and just could not get out of my own way.  Both my girls had their big dance recital that afternoon and I struggled greatly trying to pull off hair and makeup.  Particularly the fine art of mastering a bun in my very curly big girls hair.  I pulled it off though and they were both ready.  Sadly by the time they were both ready Mom was done.  It was everything in me to get enough get up and go to get out the door.  I showed up at the dance recital wearing capri jeans, a tank top and flip flops.  NOW if you know me you know I do not go to an event without a pair of heels.  I LOVE my heels.  So for me to show up among all those people all dressed nicely to enjoy their children and grandchildren's performances flat footed meant I was definitely having an off day.  In fact my leg was shaking so badly that I didn't think I could pull off heels.  The girls took the stage for their performances and all my pain, shaking and troubles melted away watching them as proud Momma beamed.  Then it was home where sadly their Dad took them off geocaching on the trail near our house while I headed to bed for a couple hours when I would have much preferred to tag along with them on such a beautiful day, I simply could not.

    Sunday hit and not much had changed, in fact my tremor was even worse.  Normally I can hold onto something with some weight and the tremor will stop as my muscles are engaged, not so much this day.  By the end of the day it would shake sitting on a table.  I spent most of the weekend when in public with muscles flexed, hand in pocket or even sometimes sitting on my had to try and control it for others eyes.  Why?  I don't really know.  It's not like it's a secret.  It's physically exhausting to have all your muscles tense for hours on end and by the time Sunday evening came my body was nearly done in.  Completely and utterly exhausted and I enjoyed the quietness of home where I could just let it twitch and move and do it's thing without worrying about hiding it. 

    Now Monday has hit, I did get some sleep (another rare thing in my life lately).  So this morning I sported my runners again to attempt that run, it was better than the other day no doubt but it was way more walking than running.  My body is simply still recovering from two wickedly bad days.  Maybe tomorrow it will catch back up and get back to normal.  Ha!  Normal, what's that?  Maybe I should say it'll get back to being 'on'.  A good body day, a day where my body hates me a little less.

    So on those bad days I simply remember the joy I found on the good ones, like that long bike ride and the fun outdoor family fun.  Focus on those moments knowing that it may be a bad day where I have limited ability to do certain things with ease that another good day is around the bend.  Because lets face it, they can't all be bad.  Life is still good, it could always be worse!

    My girlies sure do make me joyful!'

    May 25, 2014

    Treatment without a Diagnosis?

    Well do I have the answers I was praying for?  Not really.  Am I getting closer?  I think so.

    After a nearly 2 hour appointment with the Parkinson's nurse followed by an appointment with the Movement Disorder Neurologist (who were both great) I am still somewhat in limbo.

    The Doctor said I do show signs of Parkinson's Disease but it's still early.  He doesn't want to label me with the disease yet incase it still could be something else.  There's one other Neurological Disease that he still wants to rule out called Wilson's Disease.  It's a condition that can be fatal if undiagnosed and not treated, so kudo's to him if I happen to have the rare thing.  It's unlikely as it's a genetic defect that causes your body to store too much copper instead of excreting it.  It can cause liver disease and neurological conditions including symptoms of Parkinson's.  I had never heard of it before.  In doing some research I do have probably about half of the symptoms of the disease so it's still a possibility.  It would mean that both of my parents would have to have been a carrier of this bad gene in order for me to have gotten the disease.  It's therefore a long shot but definitely worth checking into especially since if treated it's the only such Neurological Disease that will not progress any further.  So I'm off to my family Doctor tomorrow for blood work and to start a 24 hour urine collection test to see if that may be the culprit of my issues.

    That aside he said I'm not showing much rigidity and stiffness which is typical of Parkinson's however from my interview realizes that I'm experiencing it myself during certain times.  Particularly if I sit for long periods of time etc... And therefore tomorrow I start treatment of Levodopa which is a drug used to treat Parkinson's.  It helps your brain produce Dopamine which in PD is something your brain stops producing and therefore PD arises.  It's a complicated set of instructions on dosing slowly over the course of 6-8 weeks to get to the full dose.  If after I get to the full dose and within a few weeks of being at that level I start to feel better then it is another step in diagnosing PD.  Seems like a strange course of action to treat someone for a disease they are not diagnosed with in order to diagnose it.  I asked the nurse if this is common and she said that not always but sometimes in younger patients this is a method they use when it's early on.

    So that adds some confusion to my thought process.  I long for an explanation of what's been happening to my body, why it has slowly been getting worse and getting harder to do simple tasks. To find a way to help these tasks become easier and to feel better.  However I'm now in a place where I don't know what to hope for.  Do I pray the medication works so that I get the relief I so want and in turn determine that I do in fact have the dreaded PD?  Or do I pray that it does not work, excluding the potential of the scary disease but still feeling awful and still with no answers?  The thoughts of being in limbo for much longer are just as scary as a scary diagnosis.  So I'm just not sure how I feel about all of it.  Hopeful that maybe it'll be Wilson's Disease still and all be over.  I guess I'll know that in a week or so.  If that's negative then I just have to do this treatment plan and be patient.  Let it all take it's course and figure itself out I guess as it's all out of my control. 

    So it looks like I shall spend the better part of the summer treating something I ay or may not have and shall yet again wait impatiently for the next appointment,  I go back to Saint John again September 19th.  That will be 14.5 months after my initial symptoms hit and 13.5 months since I had to stop working,

    Only time will tell now and I must just trust there's a plan.  This journey is definitely a test to my level of patience.  However I will continue to find joy in the days ahead and be grateful that I was ever sent to Saint John as I've gotten father from two appointments there in a 7 week period than I did in close to a year in PEI.   So I shall wait....