Sep 14, 2016

A Parkie's emotions gone wild!

For those of us with Parkinson's Disease we know all too well what's it's like to have the waves of emotions come crashing at us like a raging sea.  Because the reality of PD is that although most people know the common motor symptoms like tremors, rigidity, stooped posture etc... they usually know very little about the non motor symptoms of the disease which often can be just as bad if not worse.  Loss of sense of smell, bladder & bowel dysfunction, insomnia (that stands out as I write this at 2am), drooling, cognitive impairment and the list goes on.   Problems with apathy, depression and anxiety are extremely common as well.

Now as far as I'm concerned my husband had always tormented me that I was 'cold hearted' because unlike most women I never cried.  It was a bit of a running joke for us and I teased him that he was like my wife because he was the sensitive, more emotional type.  (Shhh, don't tell him I told you how much he cried at our wedding Ha! Ha!)  Well my how times and rolls have changed now that I have YOPD.  I find myself chocking back tears on a regular basis, anything can set me off, a commercial, a thought, a happy thing, a sad thing.  I am always trying not to shed a tear it seems.  I went from being a social butterfly to having social anxiety, it's a real struggle for me to step outside my new comfort zone and be out and about in a new social setting.  I often am hurt by something or someone but have become somewhat of a doormat in a sense allowing people to take me for granted or be insensitive to my feelings for fear of losing a friendship or having to deal with a disagreement.  As I've mentioned before in previous posts, the motor symptoms of Parkinson's are often very well controlled with medications like levodopa etc... but the non motor and particularly the changes in ones personality are tougher pills to swallow.  To have your identity, who you've always known yourself to be change and it's completely out of your control can be difficult and challenging to accept. 

It's an odd situation to feel like a social being that you always were, but yet now have anxiety about social situations which in turn can make a Parkie feel very lonely.  I know that's complicated and confusing isn't it?  Ha!  But that's what it can be like, a constant struggle to remain the person you were before but accept the new person you are now.  To force yourself to get out and about despite the fact that your give up and go has gotten up and left the apathy station.  To not allow yourself to be lonely despite the fact you want to stay away from everyone.  My what a juggle it can be, my head is spinning just typing about it and my logical brain laughs at how ridiculous it all sounds.

Now back to the emotions gone wild.  I've most certainly had a week of a bit of a roller coaster that all of the above can sort of sum up.  I've struggled with a loss of identity from having to give up my career, one which I worked very hard for and loved.  It's been three years now since I've been able to work thanks to Parkinson's and Dystonia.  Although I to some degree continued to mourn that loss I adapted and played some mind games to make it easier to accept.  Like the fact when people would ask me what I did for a living, I would answer that I was a stay at home Mom.  Not a false statement, simply a bit of an omission of the fact of why that was the case.  I had one child in school and one at home with me, nobody questioned it, that thought process and mind game worked for me.  Until.... it didn't.  My sweet 4 year old Izabella, not to turn 5 until December hopped on the school bus last week with her big 8 year old sister Samantha and headed off to Kindergarten.  You'd think after all the screaming and fighting they did all summer and how exhausted their Parkie Mom was from being an entertainment director to them all summer that I'd be the parent screaming for joy that school was back in!!!  Well not so much, rather it was reality smacking me in the face.  PD reminding me that although technically I have been a stay at home Mom for 3 years, that it was a forced situation.  That I can no longer tell people when I'm asked that I'm a stay at home Mom, instead I'm a Mom, a Wife a woman who is on disability and cannot work because I have an incurable degenerative disease, two in fact because remember PD is the gift that keeps giving!

The first day both girls got on the school bus and I walked back into the very quiet house I was flooded with emotions, sad my babies are growing up, sad I am not heading to work, sad that there's no noise and sad at the reality that five days a week, ten months of the year (with the exception of when my husband is home from the opposite end of the country where he works) that I am all alone.  I have been dreading this sadness for months now.  I even got a mini dachshund puppy in the spring because I knew it would help to have a dog, my buddy and I love her and I'm happy I have her with me when the girls are gone.  Now as a week passed putting the girls on the school bus got easier and I'm working on changing my mindset.  I know I'll keep busy I always do.  I have time for my various therapies now (massage, acupuncture, physio, horseback riding etc) that I struggled with packing in two days a week last year when my little one was in pre k.  I can actually get to bootcamp 4 days a week now all the time rather than just when hubby is home.  This is all good... All positive... I simply have to continue to remind myself of that, remind myself that I still have purpose despite not having a "career" and not having my girls home.  Remind myself that I will continue to volunteer and do things that I love on the days I'm feeling up to it.  It's a huge shift in my life, there's no doubt about that.  I am sure I will still have sad days if I allow myself to overthink it much.  But there is still a ton of joy in the journey, even on this bit of rough seas I've hit recently.  I'm confident however that the sun will shine, the winds will die down and the waters will become calm and full of shimmering beauty.

Sometimes the hardest part about writing about my journey is being completely honest.  In order to be authentic about my life with PD I have to admit the bad stuff, the stuff that irks me, the stuff that angers me, that makes me sad.  Discussing the motor complications of PD are easy, but the non motor, particularly emotional symptoms are much more difficult.  However in admitting it one must accept it.  Like Michael J Fox said "Acceptance doesn't mean resignation.  It means understanding that something is what it is and there's got to be a way through it."  And I believe the way through it is finding joy in each day; which is the way I've tried to live each day since first hearing those two words that changed my life.  I will cherish the quiet and look forward to the noise at the end of the day from my beauties.  I will continue to push myself to be more social, to keep busy while finding the balance to not burn out like I have done to myself previously.  I will continue to learn and seek the lesson in each situation.  I will continue to write, to be honest and share the pieces of joy as I find them.  Last but not least, as always I will continue to bask in just how very blessed I am to have the life I have, two beautiful daughters that are my world, a loving supportive husband (and a super cute puppy) and a great group of friends & family that support me.  Yes the seas will get rough by times, but I'll ride the wave until they calm and enjoy the thrill of it all.  Yup, there's a lot of JOY in all that!
My beautiful little family!
How could I not find joy travelling life's road with them by my side?

and of course my new buddy, Xena our 7 month old Mini Dachshund!


  1. Natasha, as always you have given me my monthly strength injection! You and I may never meet, but you will always be in my heart! I get so energized when I read your blog! I remember I'm not alone on " my journey", even though it sometimes feels like it! Just keep pumping away girl!! You've got this!!❤️

  2. Girlie, I feel you! Although I was never a social butterfly, I tend to be a recluse because of my pain. I can't go at life like other moms do, and I know you understand that. Surprisingly, there's a lot of us out there like that, which reminds me of asking the question, do we as a society really have to go at the pace we do? That's why I miss the Island so much. Even those who can take life a little faster, don't. I'm glad you were able to use your insomnia to write. Hang in there!

  3. Well said..... I find though that most of my really bad moments are due to my own stubbornness or lack of commitment to keeping up with the medication and exercise. Although, it's not reality to always keep on a legalistic schedule....more times than not I have only myself to blame. It saddens me that you are going through so much emotional "stuff" alone; I sense that you have a difficult time to see the joy around you; to see the challenges as opportunities; to make new dreams with the new circumstances that have entered in to your life. Anyway, just thought I'd let you know that I'm listening, even though I'm not always good at communicating that....Hope your week gets better....Oh, and BTW.....I had about 6 donations from the Superwalk that were from the U.S. and the online donation site doesn't figure out the conversion, but my kids fells that once you figure in the U.S./Canadian conversion, I may have received as much or more than you :>)) Ha! Have A GREAT DAY!!!

  4. nice - take care of yourself Natasha.