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!

Mar 2, 2016

"Every champion was once a contender that refused to give up." Rocky Balboa

In the game of life we can choose to spectate or play the game.  That analogy is no different for life with Parkinson's Disease.  You can win by choosing to fight it or you can choose to sit back and watch yourself lose.  And trust me if you sit on the sidelines you will lose.  You'll lose your balance, your posture, your speed, your independence.  Now again I'm not oblivious to the fact that Parkinson's is a progressive, degenerative disease.  Yes, it will get worse over time, but as I've said a million times before; the studies prove that exercise CAN and DOES slow progression.  And it doesn't even need to be vigorous exercise to have an impact.  Perhaps you can only walk, then so be it walk daily.  Studies also say that even just puttering around the house rather than staying still have a huge impact.  Staying still and Parkinson's just do not go together in more ways than one.  Most of us have tremors, or twitch, have muscle spasms or maybe even dyskinesia, making "staying still" nearly impossible.  I can feel movement in my body constantly even when others cannot see it, I can feel it from the inside out.  The same goes with sitting on your butt, being still and PD do not go well together.  You'll get stiff being in one position for too long which will inevitably cause pain.  Point being just keep moving.... regardless of what method you're using just don't stay still.  Get in the game, play it, win it!

There are so many symptoms of PD that can plague us,  I'm always calling it the gift that keeps on giving.  As in a previous post it's a non refundable gift you never wanted, but you have it so you wrap it up pretty and make the best of it.  Everyone's symptoms are different, none of us Parkies are the same and the symptom list is extensive.  The motor symptoms themselves are tremendous and difficult to deal with then you add to it the non motor symptoms that most likely you experienced years before diagnosis which can add frustration to your game of life.

If Parkinson's Disease were a game of scrabble you'd likely win with a whopping 23 points just with the name alone, let alone all the side symptom words!  Here are some of those symptoms we deal with in scrabble Parkinson style.

As mentioned pain is most likely experienced in some way by all Parkies
Apathy is when you lose your motivation to give a crap & lose your get up and go
Rigidity is the stiffness most of us live with
Bradykinesia is the slowness of movement
Insomnia and fatigue are real struggles
Depression & anxiety extremely common.
Masked face is the loss of facial expression due to muscle control
Tremors speak for themselves
Balance is often lost and falls common
Drooling, who doesn't love a drooler?
Excessive sweating (cause being a woman that's going to go through menopause isn't enough?)
Swallowing problems can lead to serious complications & choking
Memory, confusion and general issues with cognitive function
Lack of arm swing
Stooped posture (I have a lovely 'hunched' morning walk)
Bladder & bowel dysfunction, cause that's just fun to talk about! 

I give you this list of some of the main motor & non motor symptoms of PD for the purpose of educating & raising awareness.  Not to throw you into that depression category double time.  I agree, there's no doubt about it the Parkinson's scrabble game of life you're playing is a difficult one.  However there's joy in the game, find the parts of it you can work with.  Make light of some of them because laughter is good medicine.  But refuse to give up and lose the game.  Just keep moving and you'll celebrate victories along the way, you'll slow the progression of the disease and that's putting 'it' on the losing end and that's worth playing for!

"Life is a game board.
Time is your opponent.
If you procrastinate you will lose the game.
You must move to be victorious!"  
~Napoleon Hill~