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!


  1. Wow I love your post! I can relate to so much of it. It's hard but try to let go of the mom guilt...much easier said than done I know, but you are doing the best you can. I'm happy the medication is helping, even if it wasn't what you hoped for...This may sound chliche but I read Michael J Fox's book "Always Looking Up" before I was diagnosed with breast canser and love it...it resonates even more now, but if you haven't read it, it may be one that esp resonates with you since he is going through similar to what you are...(I know no two cases are identical) Keep your chin up and know you have an Albertan cheering on your fight as I battle my own. Two strong warrior Mom's just trying to get through each day as it comes....sending prayers for strength and patience your way xox

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    2. Oh you are just far too sweet... Your kind words of encouragement brought tears to my eyes. I've been following your blog and you are inspiring in your battle. You are indeed a true warrior and when I read your posts full of your incredible attitude and determination to fight it and be your own advocate it makes me realize if you can do that with such grace than I can deal with this...
      I actually read that book back in April when I was told it was suspected I had PD, a friend suggested it to me and it was a great book. He's one to look up to for sure on this road I'm travelling. It was almost eerie reading it hearing about his finger twitching and some of his initial symptoms it was like he wrote the words to describe some of the things that had been happening to me for so long that I didn't know how to put to words.
      It's an honor to have an Albertan especially a strong woman like you (even though I've never met you I can tell your hard core and I love it) cheering me on. And you my friend can know that you as well have a PE Islander cheering on your fight too! Ever since your cousin Jo told me about you I started following you and sending prayers for quick healing your way too. I have no doubt you will win your battle and kick that big 'c' in the ass! xo

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  3. Aww you are awesome :) We will cheer each other on from each side of the country and walk our paths together, knowing we are not alone, even if on different paths. xoxoxox

    1. Definitely not alone... it's funny how crappy circumstances can bring you closer to people you never expected or sometimes never knew to begin with! Life can be mysterious sometimes that's for sure, but everything even the crap stuff happens for a reason, right? Hope that someday we can meet in person! Keep on kicking that cansers butt girl! xoxo