"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!

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...

"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

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:

https://www.facebook.com/natasha.mccarthy/media_set?set=a.10154608124060501.1073741876.686625500&type=3

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?  

"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...

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

"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!

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.

"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!