Dec 5, 2015

Think outside the box & never give up!

Parkinsons Disease can be frustrating to say the least for both young & old who have it.  I can't speak to how frustrating it must be to be older and very advanced in progression but I'm sure it's extremely hard.  Being Young Onset has it's unique challenges, most of which are infuriating to someone who should be in the prime of their life and likely feel annoyed & fed up with the struggles our wonky bodies can give us.  Regardless of where you're at in progression we cannot give up!  We must keep fighting, keep finding new therapies and exercise regiments that work for us, that work for the stage we're at.  PD may have taken a lot from you already, but do not give it any more power than it deserves.

We all need our meds, we all need to listen to the guidance and advice of our Movement Disorder Neurologists, but we also like I've said a million times before need to be our own health advocate.  You have to do the work too, you can't just rely on a pill and give up on the rest.  If you do, one thing I know for sure is you are going to get worse fast and most likely depressed as well.  And we all know that PD comes with many non motor symptoms such as depression, loss of sense of smell, impaired cognitive function, insomnia and the list goes on.  Add to those the motor symptoms like tremors, stooped posture, rigididy, impaired balance etc... and well, who wouldn't be a bit depressed?  However the fact of that matter is, this is the body we've been given and regardless of if you have Parkinsons or not it is your job to take care of it, your job to take the advice from your care team and your job to do what you need to do to live the best possible life you can with PD.  You may have Parkinsons but Parkinsons doesn't have you, unless you allow it to own you rather than you showing it who's boss.

So, TRY things, anything.  Think outside the box when it comes to your overall health.  Give acupuncture a try (from a real acupuncturist) it can be an amazing therapy to help with depression and anxiety, dystonia & many of your motor symptoms.  I go every 3-4 weeks and trust me, it does the body & mind good.  Give a PD dance class a try, there's one that happens here in Charlottetown PEI weekly and it's similar to chair yoga but put to music.  It's great stretching for our stiffness and we have some laughs and fun while we're at it.  Get moving!  Doesn't matter how but MOVE... Chances are if you're like me and stiffness is a big (or for me your biggest) problem then staying in one position for any length of time can be excruciating.  This in itself should be enough to remind us to move, go for a walk or a run if you can.  Go for a bike ride, it's quite remarkable how people with PD even with severe balance issues can ride a bike beautifully!  Go to the gym, who cares if people are staring at you wondering if you're having a seizure cause you're shaking, just keep moving.  Do not allow yourself to give up and stay put because one thing is for sure you WILL get worse if you do.  I tend to be on the stubborn side of life (most of the time) and I go to bootcamp as much as I can.  It's hard as hell and to be perfectly honest I know in my heart that my time for this type of activity is running out, but I'm just not ready to give up on that yet.  I'm not ready to let Parkinsons take that vigorous form of exercise from me right now.  So I will keep going, keep struggling but most importantly keep being proud of myself for however much or little of the class I can pull off.

My personal favorite therapy I take part in weekly is horse back riding.  Yup, you read it right, a Parkie on a Horse!  Craziness you say?  Nope, it's awesome!  When riding English style you have to post in your saddle which means pushing up and lifting your butt out of the saddle and back down again as the horse trots.  This means you aren't simply sitting there bouncing.  To canter your legs need to be strong and in good position & squeezing the horse.  You also need to sit up tall while on the saddle.  So basically this form of activity works on your posture, leg strength & balance.  All huge things that one needs to work on when you have PD.  All things this Parkie needs to work on so I don't have to give up my high heel collection!!!  Not to mention horses are amazing and good for the mind & soul.  In fact there are many people that use horses for therapy without even riding, just by being with them and touching them etc... They are like magical creatures and they are very smart and in tune to people.  When I ride on a bad body day the horse typically knows it's a bad day and will be rather lazy.  It's like it can sense, 'nope, today's not a great day for her legs, she's shaking more than usual it's not the day to be fast & perky".  You may think I'm crazy saying that but trust me it's true.  There are so many studies that talk about equine therapy out there for many neurological issues and various other conditions as well.

 Roy was the first horse I started riding lessons with.  A rather lazy boy chosen by my instructor to teach me the basics of position, trotting & riding!


TBone was horse number two for me.  A quicker fella' that required better position and strength in my legs.  He was the horse I started to learn to canter with!

And you know what I love the most about it?  I progress!  I started riding lessons for Parkinsons therapy in April of 2014, right after I was told I most likely had YOPD and started treatment for it.  I've now progressed thanks to my amazing teacher who is very patient of my body obstacles, Amanda Tweety from Giddy Up Acres to my third horse, Whisky!  He's the guy who needs a rider that is in proper position to keep a canter going.  I'm still working on it, and it isn't easy for a Parkie but even on the bad days, it's fun!

My, what a wonderful thing it is to "progress" at something in a GOOD way.  PD progression sucks, big time, but when you find an exercise or activity that's good for your body, great for PD & slowing progression and you get better at it, then it's a beautiful thing.  Progressing in a good way for a change... Now I'm not saying that riding a horse is perfect therapy for anyone with Parkinsons.  Obviously there are some people who are farther along in progression and this would be dangerous.  My point is just because it may seem strange or "outside the box" it doesn't mean it won't be fabulous for you.  Try new things if it doesn't work for you move on to something else.

Always keep moving & think outside the box
Just don't give up, don't give Parkinsons that power
YOU are the boss, make sure PD knows it!

Are you going to the World Parkinson Congress in Portland in 2016?  It's going to be awesome, I cannot wait!  So much education will happen there about research, exercise, living well with PD, you name it!  Check out their website for info: 
And be sure to check out the Power Through Project and use that to encourage & motivate you to keep moving!

Here's an old post about riding from about 6 months after I had started riding therapy:

And an article in the Parkinson Society's National ePost from last fall: