Mar 26, 2016

"Sometimes you have to stand alone just to be sure you still can" ~ unknown

In an effort to be open and honest in this blog sometimes I write difficult posts.  Although overall I think it's essential to be upbeat, positive and see the glass as half full always finding the joy in each day it's also important to be authentic about the crappy stuff too.  I get a lot of messages from readers and see a lot of comments and posts on PD related social media from fellow Parkies saying they feel 'alone'.  And that often the PD community when sharing our journeys can make that empty space not feel as lonely. 

So, the honest truth is being someone with Young Onset Parkinson's is often a very lonely place to be.  It's as if you're stuck between two worlds.  The world where you're still 'young' raising children, being a wife, an active member of your community or work and the world of Parkinson's where the simple day to day activities that should be easy at 38 are hard.  Where your brain thinks you can jump out of bed and rush to get the kids packed up for school perhaps frazzled cause you overslept but you get the job done.  When in reality your body is not that of a 38 year old anymore, it's slower, it's stiff, you feel your inside's moving and twitching and jumping up out of bed before meds kick in is just plain impossible.  Then comes the social world where you are still in your prime, still wanting to go play with your kids, go out for dinner and wine with friends, do some fun stuff like you always had.  Yet because you have PD you're exhausted and just going through the regular routines of day to day life wears you out.  Your body is exhausted because it's in constant motion even if you're not plagued with major tremors visible from the outside.  Or perhaps you do shake badly and you are embarrassed of it.  Either way the social withdrawl begins no matter how much you fight it.  Add to this being a young onset Parkie who can no longer work and you've just removed an entire component of your social interaction in life.

These scenario's often start a viscous cycle.  The cycle where you want to be a 'normal' 30's or 40's adult who has fun with their family but also has fun with their friends.  However in your exhaustion and perhaps new friend anxiety (because Parkinson's is the gift that keeps giving) issues with apathy and all the scenarios mentioned above and some, a lot of that stops.  Friends stop asking as often if you want to do something because perhaps you've said no too many times.  Or perhaps you're down in the dumps as depression is a common symptom and who wants to hang out with a 'Debbie downer'?  Or maybe you have extremely supportive friends and you push them away unintentionally because you just don't have it in you to go out or go to them.  Or maybe you try really hard to get out there despite it all but you don't feel others think you're putting enough effort in.  Then you begin to feel 'alone' because your social life as you once knew it is slipping away, your friends becoming fewer and fewer or touching base with you less and less.  Maybe they used to call to check in and now you only get a text, perhaps they used to visit and don't very often anymore.  It can be a variety of things small or big.  So you then feel sad that you're not the same person anymore, feel like nobody gets what you have to deal with on a daily basis and struggle with the fact that you wish you were 'normal' again.  And so the cycle turns and turns.

The reality is as I've said in posts before, major catastrophe's in life tell us who are true friends are and you most likely did or will lose friendships after being diagnosed.  That's a tough pill to swallow but add to that your remaining social world feeling like it's crumbling especially if you've had to give up working too soon and it can be a lonely situation.  You'll likely find yourself thinking that nobody understands how difficult it is to get out there and put a smile on your face and pretend you're ok and how they don't understand the struggles you deal with.  However, you don't want them to understand it, because if they did it would mean they have PD too and that's the last thing you'd wish for your loved ones. 

What can I say about all of that?  Well, you just have to keep trying to get out there.  Try as best you can to explain to your friends when you do say no that it's not them it's you.  Try to be honest about the challenges and difficulties you face and how sometimes it's just tough to get out there like it was pre PD.  If your friends & loved ones truly are there for you they will understand and hopefully adjust things to make it easier for you, or at least make you feel like they completely understand & will keep asking anyway.  As for your part in it, you have to push through and get out there too.  Let's face it, not every day is a bad day, so stop using PD as your total excuse.  On those good days take advantage of them, spread your wings and fly!!!  Get dolled up with a pretty pair of shoes and force your lack of motivation self out the door.  You'll be glad that you did and you'll feel like you still have some form of a social life outside of the PD World.  Most importantly don't give up and resolve to a life of yoga pants, your husbands way to big hoodie & pony tails while eating a bag of chips and having total refusal to leave the house.  You're still young, you're still human, you still need social interaction so try and get out there.  Hopefully there'll be some give and take and you'll get some company on the days you don't want to leave too.  Last but not least regardless of your situation on social life/friends & family know that you are NOT alone, there are people who understand exactly how you feel both body & mind, an entire community of people with PD who 'get it' and are happily there for you.  Seek them out they along with the ones who love you will guide you back to the joy!


  1. So very true, and let not the 'gift that keeps on giving' separate you from a life well lived with our 'special' qualities. And when you are a choir member, don't offer to hold a book or paper for another to sing with you. Others just don't have the 'nack' of reading and singing while the page keeps moving!!! Irene

  2. Nicely written! And I understand all too well exactly what you mean. Most days the pills work well for me, and I can hide the tremors. What I can't hide is the fatigue, and sometimes the shuffling clumsy way I walk when I get really tired. Most of my friends, family, co-workers understand,and they help me go with the flow. But every once in a while I'll run into someone who just doesn't get it.

  3. Natasha, there is much truth in your words. I've accepted that the people who can understand me and my Life with PD, are my friends with PD. I've stopped searching for acceptance or understanding from other people around me. I am who I am, and I have had to emotionally let go of those people in my life who require me to explain myself so I can feel their acceptance.

  4. Thank you all for those beautiful comments and sharing your world... You're all amazing, don't forget it even if others might!