Dec 21, 2015

A Parkie's year in review... Goodbye 2015!

As 2015 comes to a close it marks my first full year living "officially" with Young Onset Parkinsons.  Of course I had PD all of last year and the year before and lord knows how many years prior to that.  However it was April of 2014 before I was told that I likely had PD, 6 months trial on Levodopa & an official diagnosis on September 19th, 2014.  However this marks the first full year without wondering why my body wasn't working properly.  The first full year being treated for the disease.  The first full year of my new Parkie life. 

As last year came to a close I was happy to see it go, it was a year of trials, many unknowns and a lot of fear, yet relief in knowing what was wrong.  This year seems to have been a bit less of a roller coaster ride but it certainly still had it's frustrations.  As 2015 started I was ready... I knew what I had, I had read thousands of articles and pieces of information to arm me with the knowledge needed to live well with PD and to do my part in slowing progression.  I started the year in full force of my "Screw you Parkinsons" attitude and was on the war path to show it who's boss!

Did I accomplish this task?  I'd say to some extent yes.  I like to think I still have my warrior attitude about life with PD and am still stubborn and determined to keep it in check, still focused on thinking outside the box for therapies and treatment and still holding my own.  There's one thing however with my new found fighting attitude that I wasn't expecting and didn't plan for.  To get worse...  Foolish I know I have a progressive, degenerative neurological disease, of course I'm going to get worse.  But not in a year, not me, no way that's going to take many years to happen.  Well, that bubble was officially busted.  By the time April hit which would mark the one year anniversary of being told I likely had PD I had such pain in my hands (right in particular) that I was told by my movement disorder neurologist I had developed Dystonia in my hands. Another movement disorder you can get on it's own or as a symptom of PD.  I was advised that with that and my levodopa not lasting a full 4/5 hours for stiffness relief and fine motor skills that perhaps I needed to add another medication.  Another med?  I don't think so, after all I'm busy kicking some Parkinsons ass remember?  I drove the 350k trek home full of frustration and then commenced Spring Pitty Party 2015.  Total refusal to listen to my doctor and add the new med, total determination that he was wrong, total all consumed feeling sorry for myself time....  I finally snapped out of it and registered for bootcamp and started going for regular Chinese style acupuncture because no way was I taking more meds.  It had only been a year on them and there was no way in hell I was worse in a way I couldn't fix.

So with guns a blazin' I kicked it into high gear, working out like crazy running to treatments of various sorts and I was back to my 'Screw you Parkinsons' mindset.  I focused on what I needed to, moved into summer enjoying time with my girls at the beach and having family fun throughout the summer and remained in denial.  As fall started to peak it's head around the corner I was noticing my levodopa was wearing off now in 2-3 hours as opposed to 4, I was in agony with stiffness & subsequently pain from it an average of 2.5 hour intervals as I waited for the time to take my next dose to hit and it to kick in.  My feet, oh my feet were hurting so bad.  Somedays so painful I would be limping.  With a little help from Dr. Google & my own refusal to believe PD had anything to do with it I quickly diagnosed my issue as planters fasciitis.  Went for some physio, extra acupuncture and was prepared to deal with that.  Until my next Neuro appointment came up the end of October.  Where my bubble was burst yet again.  Good try on the planters fasciitis, wishful thinking in fact.  Nope it's Dystonia again, it was in my feet and calves and that's what was causing the pain.  The twisting of the muscles.  This time with more firmness my doctor urged me to listen to him.  Take the new medication in addition to my levodopa.  There are no added risks of Dyskinesia happening with Pramipexole like there is with adding more of my little yellow friends.  It would help with the muscle spasms & pain and would help level off the crashes from the "on" and "off" periods from my yellow saviors.  When I questioned him on the fact that I'm so young, this seems so fast that I need more meds that it had only been 13 months since officially being diagnosed and 18 since starting treatment his response was simple "it's normal progression for young onset Parkinsons".  I cried...

Now as we are about to venture into the Christmas season and subsequently ring in the new year I can admit defeat.  Not defeat in the sense that I have given up or have any intentions to.  But the kind of defeat where I admit my way didn't work and I have to let go and trust the expert on my disease.  Although it was a rough 5/6 weeks of adjusting to the new medication and a lot of very unpleasant 'stoned like' days I've now gotten used to it... and much to my surprise the pain in my feet has drastically improved, in fact most days I have none at all and when I do have it it's minimal and nothing in comparison to before.  I do find that my crashes aren't as severe either I am a bit more levelled out.  He assured me that if I tried this I would most likely see an improvement, that I would likely even be able to get back to working out harder again like a year before, that I would likely be able to start running again and that I would simply feel better.  I'm having some major set backs in sleep disturbances since the new drug was added but that's another story for another time.  Overall, and as much as I hate to admit it sometimes, he was right.  I fold, you win, my cards weren't as good as yours. 

So what have I learned in 2015 that I can take with me into the new year?  Well I've learned that I need to keep fighting and be stubborn, because that's just who I am.  I need time to process changes in my fight with Parkinsons and attempt to try various things in my own way just like I did this year.  I need to know that more medication is the last resort and not just accept another pill.  That in doing this and attempting 'my way' there may be frustrations, but at least in the long run I'll know I was my own health advocate and I tried to the best of my ability to fight it my way.  But I also learned that sometimes you have to admit defeat and listen to the expert even if that makes you frustrated and cry a lot.  I'm 'learning' to accept the fact that I am going to progress even though that sucks, it's a process and I won't ever master that one I don't think, but I will work on acceptance of the negative not just positive.  And most importantly I've learned that as always I have amazing people in my life to help pick up the pieces when I feel like I've completely broken apart.  Family & friends that are there to listen to me scream and shout when I'm angry, cry with when I'm upset and most importantly laugh with and laugh/shake it all off.  I now venture into 2016 with alarms set on my phone for two sets of medication to take at various intervals to which I still get annoyed and roll my eyes at when they go off.  But I have 'improved' since admitting that defeat.  I shall ring in the new year with a body that's working a little better, a body that has a bit less pain during the day and fewer "off" periods and I find joy in those improvements.
Life is a journey and although sometimes I don't know what road I'm travelling I'm grateful for the road and even it's twists and turns!
So, goodbye 2015, thank you for the lessons, thank you for the friends & family by my side throughout the struggles and the happiness, but good riddance to you.... 
Hello 2016, this Parkie is ready for you!!!

To my Parkie friends out there...
Never stop fighting!
Merry Christmas & Happy New year!

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: