Sep 22, 2016

If you haven't been to the World Parkinson Congress boy are you missing out!

WOW is the word that comes to mind when asked to describe what it's like to be at the World Parkinson Congress here in Portland, Oregon.  Was it worth the 5895 km trip to spend the week with over 4200 people from 67 countries either living with, caring for, involved in, researching or treating Parkinson's Disease?  Absolutely & without question.  AND it's not over yet!!!

I arrived in Portland on Monday evening.  Technically today (Wednesday) is the first official day of the Congress, however I was here for "Day 0", the pre congress.  I will admit my head is already spinning with still two days to go, the information is overwhelming not because the content is extreme but rather there's sooooo many choices for what you want to learn about.  In fact I have myself wishing I had a clone or a travel partner so they could attend opposite sessions than I so not to miss out on any valuable information.
The opening ceremonies were truly mind blowing and I found myself fighting back tears at every turn.  Not because anything about it or any of us Parkies is or should be considered sad but rather that it's so incredibly powerful and inspirational.
The Parkinson's community is tight knit and like no other, the genuine care, concern support & love for one another shines through.  The amazing Parkie's out there with stories of hope, courage, strength, determination & how they find joy in their journey with PD is truly incredible.  The experience is difficult to put into words, other than to say it's empowering, inspiring and very emotional all at the same time.  Brian Grant, former NBA player with Young Onset Parkinson's spoke at the opening ceremonies and he was more admirable with every word he spoke.  I'll write a bit more about him, his foundation & life with PD at a later time, so stay tuned.  We were also in awe when the beautiful Maryun "May May" Ali took the stage with confidence, enthusiasm, honesty & grace.  She spoke of her father the great Muhammad that the Parkinson's community admired and sadly has lost and his personal PD journey.  How he was all about time, and how precious it is.  She spoke of his love for magic and how he would perform his magic tricks as much as possible.  But most importantly she spoke of his courage, his fight and his positive personality towards life & Parkinson's Disease.  I think it would be impossible for there to be a person in the room that wasn't inspired by her address as well as Brian's. 

I also had the great pleasure to meet some other inspirational Parkies.  People who fight every day, encourage others with PD to do the same, challenge, motivate & inspire the entire community.  And I must say aside from how amazing the content is of the various sessions (and there are a ton to choose from) meeting these people who share in the same battle although of various degree's and symptoms as we are all different, is an experience just as if not more rewarding than the congress overall.  It's truly a remarkable experience one I will never forget and cannot urge you all to think about attending next time.  Which by the way will be in Kyoto, Japan in 2019! 

For instance this evening while attending an incredible film night that showcased short films from all over the globe and how people are facing PD head on, I had the pleasure to see the entire story of and meet Andy McDowell.  Andy created a video submission for the last congress called "Smaller" which was one of the first things I showed my oldest daughter Samantha after being officially diagnosed.  I thanked him for that and for his courage to speak up and spread awareness that some of us affected with PD have small children and are not 'old'.  And although not better or worse or in any way meant to compare with someone who is older and their challenges, ours are simply unique when we have little people to care for ontop of it all.  You can view his poem here:  www.youtube.com/watch?v=3nI17vFWYaQ  And his film "Switched On" can be found:  www.youtube.com/watch?v=GJ3fDzCTXjk

Tim Hague Sr. was the Emcee for film night and you may recognize his name as the fellow from Manitoba, living with Parkinson's and the winner of season 1 of the Amazing Race Canada!  He's also a fellow WPC Blogger and it was an honor to meet him in person this evening.  I hope to get a chance to speak with him again before we both head back to Canada.  You can check out his blog & some video links here:  www.timsr.ca/watch-tim-speak/

I saw this man's video before one of the sessions this afternoon for the first time.  It was amazing, it came in 2nd place for the video submissions.  This man is Superman for sure!  Living with PD I believe he said 14 years now and rocking it!  He said many years ago his young son told him that he was Superman and Parkinson's was his kryptonite.  He fights everyday and is inspiring people myself included all over the globe!
www.bing.com/videos/search?q=alfredo+riuz+parkinsons&&view=detail&mid=99747C5F080946B8C41A99747C5F080946B8C41A&FORM=VRDGAR



The beautiful Soania Mathur.  Mother, Wife, Physician, Author, Educator, Ambassador & person living with Parkinsons.  I was honored to have her sign her book I brought along with me.  Ironically she's not only amazing and a Canadian but my family Doctor who thank heavens never gave up on me until we got answers on why my body was broken and her are good friends.

 WPC Blogger and friend Laura Kennedy Gould, Blog: "The Magic Trick - Life with Parkinson's"

For more photo's and information from the Congress visit the A Broken Body's Journey Facebook page at:  www.facebook.com/brokenbodysjourney

And sadly last but not least.  My WPC Buddy suddenly passed away last week.  I was so incredibly excited to meet and hang out with him this week.  We started talking back in the spring and despite how incredible the congress is I'd be lying if I didn't say there was a slight bit of it being bittersweet.  He's been honored with a moment of silence I know his presence is here with all of us and I can say with certainty he is thought of often.  I attended the WPC Buddy reception without you both, shed some tears & wore my Dallas Cowboys hat in your honour.
Jason Arwine, thank you for the inspiration during the short time I knew you.  Enjoy dancing with the angels free of any of PD's struggles.  To you Heather, I'm so incredibly sorry and I still very much look forward to meeting you and hugging you tight.
 RIP Jason Arwine
December 12, 1978 - September 15, 2016
 


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!

Aug 22, 2016

Portland, Oregon, here we come!!! 2016 World Parkinson Congress!

It's hard to believe that the 2016 World Parkinson Congress is less than a month away now!  I have to say I'm super excited to meet some fellow Parkie friends I've had the pleasure of making thanks to this blog that'll also be attending.  I'm also beyond thrilled to have the opportunity to meet the other 15 official World Parkinson Bloggers while in Portland.  Find all 16 of us here:  www.worldpdcoalition.org/?page=BloggingPartner  I'm honored to be a small part of this amazing organization that puts on a convention like no other in the world!  Where scientists, medical professionals, researchers, physicians & people with Parkinson's Disease will all come together under one roof for one amazing event jam packed with information.  A unique opportunity for the Parkie's of the world to hear first hand information and arm ourselves with knowledge; after all knowledge is power.  As well as the chance for the medical community to learn from those of us who live with the disease day in and day out.  WOW, is what I have to say about that!  There is no other health conference in the world like it that brings all these perspectives together.

So, what are you waiting for?  Didn't register?  Well log on now and do so, I didn't make it to the last conference in Montreal as it was prior to my official diagnosis, but I know many people who attended and said it was incredible.  With a combination of plenary sessions, round table workshops, presentations & lectures it's sure to be likely a little overwhelming but in an amazing information gathering kind of way.  And they have thought of everything to try and make the experience enjoyable for anyone with PD, there's even an area called "Wellness Way" with meditation rooms, renewal room, massage/reike and even a care partner room for those who attend as our support.  There's an art walk, book nook (featuring books & authors that speak directly to us), the WPC Choir, Film you name it!  They had the 'WPC Buddies program' where upon registering you could request to be paired with a buddy and have the opportunity to talk to them ahead of time so you'd feel like you knew someone when you arrived.  I think this is brilliant especially for a group of people who can have social withdrawal and anxiety as a symptom.  I was paired with a man in Texas and his lovely wife, Jason & Heather.  We have a lot in common and have skyped and emailed back and forth and I'm really looking forward to meeting them in person.  In the welcome package they even have cards to keep in your passport explaining you have Parkinson's and listing facts about the disease, an area to note your medication etc... They have this down to a science and I cannot wait to experience it!

For those of you who are reading and planning to attend I hope I get the opportunity to meet you, it's a privilege to be a part of your journey even though our road is a tough one, together we can lift each other up and always remind ourselves that we are not alone.  So please, if you plan on attending and haven't registered yet don't wait another minute.  Register here:  www.wpc2016.org  

I cannot wait to soak up information from the medical community, arm myself with whatever knowledge I can gather about how to live better with PD, find out about treatment options for the months and years to come & to meet so many others that know exactly what life with Parkinson's is truly like.  It's going to be awesome, I'll see you in Portland my Parkie friends!!! 

Jul 23, 2016

Courage is dealing with one loss after another but continuing to find the joy in each day

Change is inevitable in life, but with Parkinson's it can be one frustrating/heartbreaking change after another.  When you are diagnosed obviously there is a huge change in your life an a big focus on acceptance.  However that mental state and process will continue to repeat itself time and time again as your new life with PD unfolds.  I often joke that Parkinson's Disease is the gift that keeps on giving because the issues a person with PD can get tend to be astronomical when you combine the motor and non motor symptoms.  However, jokes aside the reality is that it's really a disease that takes... a lot.

In the grand scheme of things I have been lucky and PD hasn't taken nearly as much from me as it has other Parkie friends of mine.  However I've still suffered loss at the hands of the disease and one mourns loss when it's stripped from you and out of your control the same as one mourns a death.  The disease has taken my career from me and although it's been 3 years now I still mourn it sometimes daily.  It's one thing when a person retires and struggles with what to do next, or chooses to give up work to be an at home parent or whatever the case.  However when your career is taken from you and you love it and it's out of your control it's a great loss.  I've spoken of it before and how it feels like a loss of identity.  Sure I keep myself busy volunteering on my "on" times and busy with the kids, I do that so I don't go crazy and feel totally useless.  But I can assure you that for anyone living with Parkinson's disease or any other health issues that has been forced to give up their careers they struggle greatly with this.  I think it's worse for those of us who are younger, but regardless of age it's something the disease has taken from you, it's out of your control and it's hard to accept.

Then there are the typical losses of friendships/relationships, sad but true it happens.  Any major crisis or change in life tends to show you who your true friends are and getting sick or diagnosed with something like PD is no different.  And it's definitely confusing, frustrating very sad and something you mourn when you lose someone from your life you love.  I've been here and I know most people I know have as well.  Other typical loses and things PD takes from you are physical.  Perhaps it takes your ability to hold a fork with food on it with ease because your tremors are bad.  Maybe it takes sleep from you as most of us with PD suffer from Insomnia or at the least severe fatigue.  It could be your ability to perform a certain task that has been taken from you maybe you used to play guitar but now you cannot.  There are so many things that are taken from us.

And then there's the big things that are taken from you, the make you want to crawl in a hole and bawl your face off or punch holes in the walls.  I have witnessed this from some of my older Parkie friends and it's terrifying to watch.  For someone who's young onset it's like a glimpse into your future, it's heart breaking and you feel helpless.  When PD hits the stage where it takes the HUGE things from you like your independence it must feel like your entire world has come crashing down on top of you.  When you're told that you can no longer be home alone, you need round the clock care, you are no longer able to drive your car in turn losing the last things you've held onto in your mental game of feeling like you still exist, that you still have some form of an independent life, that you still have some control.  Let me tell you when a disease like Parkinson's takes from you, takes things you love, takes your independence, takes, takes and takes some more it is heartbreaking, it's crushing, it's depressing and it's so very very hard to accept.  And although I haven't gotten to the stage I'm speaking of here I know the tremendous feeling of the dark cloud overhead and the empty feeling inside from losing my career, fine motor abilities, sleep and some friendships.  I know what it feels like to put on a brave smiling face when you go out in public when you feel like your dying inside.  I know what it's like to want people to think you've got this, you're strong and a fighter and then cry yourself to sleep at night.  I know what it feels like to know your family & friends love you and want what's best for you, but at the end of the day you feel entirely alone because nobody truly understands what you're feeling physically or emotionally.  So when I see people I've come to love who have this disease who have hit those walls far beyond where I am in my PD life I do understand to some degree the anger, the resentment, the fear, the sadness they must be feeling.  And watching it scares me but also breaks my heart because I wish I could fix it for them.

But when it's all said and done, despite the unimaginable loss, all the things this disease "takes" we dust ourselves off, we put on a smile even when sometimes it's fake, we get stubborn, we fight and most importantly we find the joy in each day regardless of the battle at hand.  And this is what keeps us going this is what sets apart the person who has given up from the courageous person who's continuing to go to war.  It's not easy and I am positive that for those friends of mine who are at the later stages and having all the big things they love taken it's overwhelming.  But I can tell you this, those people are still fighting, still finding the joy in their journey and although they have their moments they are amazing, to be admired, to be looked up to.  They are brave beyond measure, courageous beyond your understanding and even when they are angry or sad they are still fighting with everything they have.  So don't underestimate their super powers and most importantly their need to process their loss in their own way in their own time.

One of the worst things of being a younger person with Parkinson's Disease is that you become friends with and grow to love alot of people that are significantly older than you.  You have a unique front row seat to the progression of the disease you have, you will watch people you love suffer, you will watch them struggle, you will hurt when they hurt and you'll be brave despite the fact that it scares the living daylights out of you.  I sat by the hospital bed of a fellow Parkie not long ago who I have come to adore over the last couple years who is sadly in the final stages of his life and very unfairly battling cancer in addition to PD.  As I tried not to cry for my own sadness this man continued to be joyful in that hospital bed, continued to talk to me about the joy he found in that day and the joy he would have in the day to follow.  It was truly inspirational that when at a stage when most would just give up and want to let go because life and health have continued to take and take and take again that he could continue to be so positive.  THAT is courage, THAT is bravery, THAT is admirable because acceptance sucks sometimes!

Courage comes in all forms, but when you continue to lose, when something like Parkinson's disease continues to take and a person continues to smile and look for the joy in the journey despite the extremely unfair hardships.... That my friends is to be courageous....   and to my Parkie friends who are suffering with so much being taken from them, you are the definition of courage because you continue to smile, you are brave, you are STILL strong although you may feel weak, you are still amazing and you are still YOU in all your wonderfulness.... These are the things Parkinson's cannot take from you, ever....


Visit my facebook page:  www.facebook.com/brokenbodysjourney

Jun 26, 2016

"He who is not courageous enough to take risks will accomplish nothing in life" ~ Muhammad Ali

I think quoting the great Muhammad Ali is appropriate in a post about not giving up and pushing yourself as hard as you can.  The world was saddened when this man left us, and the Parkinson's community of course felt the blow like an opponent to his punch.  He was an advocate, inspiration and a fighter both in the ring and when it came to PD.


I find great inspiration in fellow Parkie's that refuse to give up and fight in ways that most people who aren't living in broken bodies would never think of.  Like Alison Toepperwein, a woman the same age as I am, single Mom and not only living with Young Onset PD but literally kicking it's ass!  She works out like a mad woman, she tosses herself in the air with rings grabbing onto the next pin, does chin ups like a champ, climb's stairs with her hands from the wrong side of the steps and a bunch of other insane things I cannot even fathom trying.  Why you ask?  Well because she's a fighter and she refuses to let PD take any more of her than it already has.  She recently trained and got herself a spot on America's Ninja Warrior and her story before she ever got on the show is incredible, she's one of my new Parkie Mom Hero's without a doubt.  Although when she actually hit the obstacle course she did not finish she's still a rockstar and although I have never met her in person I am incredibly proud of her, inspired by her and in total awe. 

I've always talked about how exercise for me is done through 'fear based motivation', seeing people more advanced than myself, reading about what can happen as time goes on with this degenerative neurological disease motivates me to do the only proven thing to slow progression... exercise.  And when I do and I feel better, and my body cooperates more it motivates me to try and get other Parkie's moving too.  Now I do not claim to be even remotely anywhere in the ballpark as Muhammad Ali or Alison Toepperwein, but I do know one thing for sure.  I too am a fighter.  I too am determined.  I too work as hard as I can.  I too refuse to give up...  And when you see people fighting as hard as they can despite their disease/obstacle, then really what excuse do I have?

I finally caved after a year of fighting it and added another medication (Mirapex)  to my current levodopa cocktail.  The thoughts of being 38, on treatment for less than 2 years and already needing a second drug were horrifying to me.  However with painful Dystonia (neurological movement disorder that causes muscle twisting which people with YOPD often get) making it nearly impossible to exercise because just standing was excruciating combined with my levodopa wearing off in 2 short hours I just had to finally take my movement disorder's neurologists advice.  As usual he was right and I should have done it sooner, but sometimes I just need to find my own way in my own time, this disease is still relatively new to me after all.  With significant improvements however it was time for bootcamp again.  I've gone to a place called 3rd degree training for several years now on and off since having my second daughter.  Since getting diagnosed with PD I have done portions of an 8 week round here and there but it's been very hard and I never pulled off more than 3 classes in a week.  I decided however that this time was going to be different.  No excuses not even Parkinson's Disease.  I was doing this and I was going to work hard even when it felt nearly impossible.  I would modify what I had to (the team there are wonderful to help me with this) and I would keep moving even during the moves the rest of the class were on that my wonky body couldn't do.

Well, I'm proud to say that I just completed that 8 week bootcamp.  I combined bootcamp with a weight circuit class there once or twice a week and I worked out at 3rd degree 6 times a week for the first 6 weeks and 5 times a week for the last two because my hubby was away and that's all I could get to being alone with the kids.  I modified ALOT of things especially in the beginning weeks, the Dystonia in my legs acted up horribly during class particularly in the later weeks requiring me to go for physiotherapy, massage therapy & acupuncture treatments each week in order to get enough relief from the pain in my legs to keep working.  I showed up with weird braces on my ankles, my legs taped up with sports tape and looking ridiculous a lot of times but I showed up.  I had tears during a couple of classes from frustration of how hard some things are for this body and I even bawled and cried the entire way home from a morning class around week 4.  Not because it was a bad workout or painful but because I was flooded with emotions.  I had many sweet kind bootcampers tell me how great I was doing and that when they think they can't do it they see me and figure they have no excuses, they are all beyond supportive and kind.  However on that day I didn't want to be anyone's motivation, I just wanted a normal body that could go do all the same things the rest of the class was doing.  So it didn't come without it's challenges or meltdowns on occassion but that's ok.

I don't tend to shake much, my main issues are stiffness, being hunched over like the hunchback of notre dame when my meds aren't kicked in & the pain from Dystonia.  However when I work out and get using the muscles on my right side I shake quite badly.  But, by the time week 8 hit, I barely shook during a class.  I would still during balance moves, for some reason balancing brings it out, and if I did a lot of upper arm stuff, planks etc... I had people comment to me that I wasn't shaking, or that I only started to shake at the end of class.  I got strong, I could do a tricep hold from my toes where as at the beginning I could barely pull one off from my knees.  I could hold a plank even when shaking for a really long time.  I found muscles I thought were lost like my abdominals and although I still can't see them I know they are there because they burn when doing core work, Ha! Ha!  I slept better (insomnia and sleep issues are a huge problem for people with PD), my anxiety reduced because PD is the gift that keeps giving and anxiety and depression are symptoms.  My entire body just worked better.  In fact they say that you cannot get better when you have PD, that you can only "slow" progression through exercise, but the reality is... that's not true, or at least it's not for me.  With adding the extra medication and much to my dismay taking 11 pills a day of three varieties combined with bootcamp I DID get better... I went from a 2 on the five point PD progression scale (5 being worst) down to a ONE... yup, that's right... Screw You Parkinsons!   I'm in no way cured, if only that were possible, I still can't use my dominant hand for anything, still can't hold a pen to write and still am stiff and have lots of challenges through the run of a day and some days I'm crashed but overall I feel better!  OH and I am happy to say I lost some inches & toned up, although I do not go anymore for size or appearance, I go to kick some PD's ass but it's certainly an added bonus!
 Before & After Shots from
my 8 weeks at
3rd Degree Training



The team at 3rd degree training are amazing, they continue to motivate me to not give up and encourage me to get one more push up in.  They are kind and caring and best of all they don't care that I have Parkinson's they just want me to be the best I can be, and I love that!  The people I work out with there encourage me and keep me going.  I cannot wait to start the next round, I will continue to go even when I think I can't do it anymore.


I even got strong enough that I decided to take my own advice and stop saying "can't" or I "shouldn't" try that and gave vaulting a try!  I take horseback riding lesson's once a week for therapy (balance, leg strength & posture work) and vaulting is basically gymnastics & working out on a moving horse!  I thought there was NO way I could do it so I wouldn't try.  However thanks to my workouts I had enough core and arm strength and I tried it and I LOVED it and cannot wait to try it again! 

If Muhammad Ali can fight the way he fought both pre and post PD and inspire people, and Alison can train like a madwoman and be a Parkie on America's Ninja Warrior and this exhausted, anxious Parkie Mom of two can hit bootcamp or weight circuit 6 days a week and even try something crazy like vaulting and actually improve my PD symptoms; then what in God's name are you waiting for?  Maybe you're not able or interested in bootcamp's or being a Ninja, but that doesn't mean you can't get off the couch, set goals for yourself and move.  Do not sit there and let Parkinson's (or anything else for that matter) take control.  This is your life, your one and only body you're going to get and YOU should be the one in charge of it's destiny.  Fight for it, fight to keep it healthy and strong.  Refuse to give up no matter how far along you are in progression, there's always something you can do to fight and to keep moving even if you have to do it all from a seated position.  Think outside the box... Do not say "can't", say "I'll try".

As I've stated from the beginning and I think my very first post on this blog....
Parkinson's you picked the wrong chick to mess with, so bring it on PD, bring it on!
OH... and Screw You!

 
I hope this is me someday!!! 
 
Check out my FB Page, 'A Broken Body's Journey' www.facebook.com/brokenbodysjourney
 
 

May 25, 2016

Let's talk Dystonia...

Unless you have it, or know someone who does you likely have never heard of it or have any idea of what Dystonia is.  Wikipedia defines Dystonia as:

Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.  the movements may resemble a tremor.  Dystonia is often initiated or worsened by voluntary movements, and symptoms may "overflow" into adjacent muscles.  Treatment must be highly customized to the needs of the individual and may include oral medications, botulinum neurotoxin injections, physical therapy and/or other supportive therapies, and/or surgical procedures such as deep brain stimulation.

Now that you've read about what a boat load of fun dystonia can be you're likely wondering what does this have to do with Parkinson's Disease?  Well, as I've said a million times before PD is the gift that just keeps giving.  Not only does it hand out the typical motor symptoms of tremors, rigidity/stiffness, stooped posture, slowness of movement and such.  It also has lots of fun non motor symptoms like loss/decreased of sense of smell, bladder & bowel dysfunction, depression, anxiety, insomnia and the list goes on.  As if ALL of that isn't enough Parkie's tend to also get dystonia as a symptom of the disease.  Yup that's right, because one degenerative movement disorder isn't enough, why not give them two to deal with simultaneously?  So those of us lucky enough to get this extra gift must wrap it up pretty and do the best we can with it.  You can get dystonia on it's own or as a symptom of PD and for some reason dystonia is also more likely to present in young onset patients with PD than older ones.  I guess that's PD's twisted sense of humor kicking in, saying "well, you are in better shape likely than an older person who gets PD so we best throw some curve balls in there for you to make it a tad more challenging!"  Didn't you know that Parkinson's is one funny disease, I suppose that's why I laugh so much at it and make jokes of it often.  After all one might as well laugh as to cry.

I started to feel the effects of Dystonia first in my hands, when you get it in your hand they call it focal dystonia and sometimes even writers cramp.  Initially it only hurt if I tried to hold a pen to write or use my hands for anything.  As time went on however they started to ache and pain 24/7 right around the time I started having trouble with my feet and often could barely stand on them the pain was so bad.  I had myself convinced I had planters faciatis, subconscious denial perhaps?  I get acupuncture treatments in my hands every 3 weeks, I highly recommend it.  Although it doesn't solve the problem I now only have pain when using my hands for any length of time as opposed to all the time before.  That is a HUGE improvement.  Not to mention acupuncture from a real acupuncturist can do wonders for a million other things whether you have PD or not.  But I digress... A year ago my movement disorder neurogolist confirmed that my self diagnosis was incorrect and simply wishful thinking and in fact I had dystonia in my calves and the twisting of the muscles was pulling on my achilles tendon making the pain refer into my feet.  He suggested botox injections which is the standard and apparently very effective treatment of dystonia.  My mind however instantly goes to that's poison being injected into your muscles and no way am I doing that to myself.  He suggested a medication called pramipexole (or Mirapex) which would be effective in helping not only the dystonia but levelling off my crashes from levodopa during the "off" times.  I of course refused any more medication yet, you can read about that in the previous post.  Long story short by the time last fall hit and I could barely walk let alone exercise I finally listened and added the new medication.  It did wonders for my dystonia, I could walk again without being in extreme pain and as he said I was able to get working out again. 

Now 7 months later I'm still walking pain free, still taking the added medication, still going for acupuncture every three weeks in addition to physio & massage therapy and still working out 5/6 days a week.  However, the pain is resuming when exercising and in the moment can be bad enough to bring tears to my eyes.  I'm not sure though that it's actually the pain doing that but more so the frustration I have because of it.  It seems that dystonia is much harder to deal with and treat than Parkinson's is over all.  Now I'm sure I'll have days where the opposite is true, but from my standpoint today PD is managed well with meds & exercise where the other isn't.  I've found wearing ankle support braces and working out shoeless helps however that will cause problems in my feet down the road so it is merely a temporary solution.  I will be returning to Occupational & Physio therapy to see if we can try something else, I may up the acupuncture treatments for a while as well and definitely must get those calves as painful as it is massaged more regularly.  Long and short is my goal is to find a solution that doesn't involve botox injections into the muscle.  Sadly however it seems my cycle is about 6 months of fighting it and eventually giving in.  Whatever "it" may be, new meds, increased meds etc...   What frustrates me the most about this scenario is that when it came to new medications or increases my initial response was "not yet, it's too soon" when I would fight it.  I always knew I'd need to do it at some point.  However with botox injections my mind was set on never, ever, ever... and yet now I'm saying "last resort" and it feels as though that last resort is getting closer and closer.  If any of my fellow Parkie's reading this is dealing with dystonia and you have found an alternative treatment to the injections I would love it if you'd take the time to send me a note!

At the end of the day I'm still doing very well, I'm still working out even if some days it frustrates the hell out of me and that is keeping my body working better plus it's helping with sleep issues and stress/anxiety.  So giving it up on that is definitely not an option.  It keeps me healthy, it keeps Parkinson's in check and from getting worse.  Sometimes this broken body's journey hits some forks in the road where I have to find solutions to issues or decide which road to take.  These forks are never easy and I suspect as time goes on will become even more difficult, but the important thing I try and focus on is that I still have choices.  I can give up, or I can keep being stubborn and fighting.  And I have learned to forgive myself for giving "in" on some of my mindsets knowing that sometimes giving in doesn't mean you've given up, but rather that you have made a hard choice to improve your quality of life even if there's a cost.  And although you may have many great supporters in your corner you are on your own and the choice & direction you choose has to be made by you!  Struggle with as many of them as you want, but regardless of the frustrations always take a minute to find the joy cause it's there even on a tough journey!

May 23, 2016

"A mind that is stretched by a new experience can never go back to it's old dimensions" ~ Oliver Wendell Holmes Jr.

Two years ago today I was sitting at the Saint John Regional Hospital just a month after seeing a neurologist there that told me he thought I had Young Onset Parkinson's.  This time I was waiting to see the Movement Disorder Neurologist that specializes in the disease.  I remember feeling sick to my stomach wondering if after a year and a half of unknown, a year and a half of days where I had next to no fine motor skills, a year and a half after having many days where I could barely get out of bed and walk, a year and a half after many attempts to console my oldest daughters tears because she was scared her Mommy was dying.  A year and a half of hell...

I left that hospital 2 years ago today full of fear, anger, sadness but yet relieved.  I left after a 2 hour session with the Parkinson's Nurse followed by an appointment with the doctor; with a prescription in hand for levodopa to be taken 4 times a day.  The gold standard treatment/medication for Parkinson's Disease and another appointment date for 6 months later to confirm my diagnosis.  Because once diagnosed you are officially uninsurable for life (ridiculous, but that's for another post) and "labelled" they tend to wait on their official diagnosis until they can confirm the treatment works even if you have it, particularly in young onset cases.  Or so my Doctor tends to do particularly on early stages of the young according to his nurse.

Now, two years later life is so much different.  Although the medication did miracles in the fact that I had windows of opportunity to use my hand and the stiffness was much better so I could move freely it was short lived and I got worse in a year.  Dystonia in my hands, feet & calves was added to my long list of symptoms of the disease, that's another movement disorder that you can get on it's own or as a symptom of Parkinson's, particularly in Young Onset.  So now two years later after fighting it & my Doctor for six months I am taking 3 levodopa carbidopa a day, 2 controlled release of the same medication at bedtime so it doesn't wear off in the middle of the night and curbs the agony and 6 pramipexole a day, 2 at a time.  It irritates the hell out of me that my alarm goes off on my phone 7 times a day to take meds.  However after fighting my neurologist on the new medication this time last year I was a mess and unable to run anymore or do any real exercise.  Come last fall he assured me that if I would just trust him and add the pramipexole I would most likely get better and be able to run and do bootcamp again.

Now trust, that's a tough one for me.  I have no problem trusting that my doctor is an expert on Parkinson's Disease.  I have no problem trusting his advice for treatment when it comes to exercise and other alternative treatments.  However when it comes to medication I fight him every time.  Taking pills drives me mad and having to add more pills & new types in what feels like a short amount of time with this degenerative disease is a tough pill to swallow.  I'm going to turn 39 in October and I fight with every bit I have in me to not get worse and when I do and I need more meds it's a big blow.  However I'm trying to get better at trusting him in all avenues.  After all he is right every time or has been so far.  When I finally caved last fall and took the new med in addition to my levodopa I did get better.  As promised I was able to get working out harder again like I had before.  Now I do bootcamp or weight circuit at least 5 times a week sometimes 6.  It's still hard, but it is for an able bodied person, I still modify lots of things that my body can't do, but I am doing it.  So my advice to my fellow Parkies reading this is to NOT be like me on the trust side when it comes to your Doctor.  Do your research, be your own health advocate but trust their recommendations too and don't be as thick skulled and stubborn with them as I am.  I am working on getting better in this area.

Overall 2 years later life is good.  I'm very active, I work really hard to keep my body in check with exercise, the only proven way to slow the progression of this disease.  I still roll my eyes with every pill I have to take, but I know that I cannot live without them.  It's just part of the journey and one you have to accept.  And because of those 11 pills a day 97% of the time anyone that sees me would never guess I had YOPD and likely have a hard time believing me when I say I do.  Because of those pills it's rare I ever have to be out and about during an "off" time when they are not working, so unless you're very close with me or live with me you've likely never seen what it's like for me to complete a task if they aren't working.  I am determined and stubborn to stay active, healthy and keep my body working as best as it possibly can for many many years to come.  I am always thinking outside the box on therapies & currently trying to learn how to play the fiddle and possibly the drums to help with the cognitive decline that can come with PD.  I refuse to give up when it gets really hard, like I said in my last post we shouldn't say can't, just I'll try.  This is my journey, one I most certainly did not choose but rather had it forced on me but I can choose how I'm going to accept it, how I'm going to live with it and what my attitude will be about it.  And my attitude always has been and will continue to be "Screw You Parkinsons" cause you picked the wrong chick to mess with!  When I have my down and out days of feeling sorry for myself I try and kick myself in the rear and get that motto back front and center and if you ever see me being any other way then it's time to worry and time for you to start kicking me just as hard!



I am 38 years old and I have Parkinson's Disease.  I have known I've had it for 2 years now and I will have it for the rest of my life.  I am an a mother of two beautiful little girls and wife of an amazing husband.  I AM more than my disease (and so are you reading this) and I am going to live well on this journey and continue to find the joy at every turn, even when it goes downhill here and there.  And I will always be grateful for the people in my life that stuck with me through this & love me enough to pick me up on the down and up hill battles.

I've gotten alot of friend requests on Facebook through this blog and therefore I created a Facebook Page.  Here's the link:  www.facebook.com/BrokenBodysJourney
 
 

May 16, 2016

"It's hard to beat a person that never gives up" ~ Babe Ruth

I am blessed with two beautiful daughters, who could not be more opposite of each other in their personalities.  Samantha is a busy bee with a brain that I don't think ever shuts down.  She's not quite 8 yet and does math problems for fun, I can assure you she does not get that trait from her mother!  Four year old Izabella on the other hand is very smart but also very lazy.  When doing any kind of learning or work with her she often after a few minutes gets bored and will say "I can't do it, it's too hard".   Her junior kindergarten teacher I'm sure has had some frustrating moments with our spunky little girl.  But one thing she always stresses with her is:  "We don't say can't, we say I'll try"!  Wise words from a teacher of little ones don't you think? 

Such a simple little phrase that we should all adopt in our life, especially those of us with Parkinson's.  All too often I speak with people with PD who have in a sense or in some capacity given up.  It angers me, frustrates me and makes me extremely sad.  Don't get me wrong I have my give up days too, we all do and we're all entitled to them.  But what's important is that we do not allow ourselves to stay in that place for very long.  Those pitty parties will always come & go along with the hissy fits and perhaps even some major anger moments and you know what?  It's ok.  We have a lot to be angry over.  However this attitude that I "can't" needs to be always overcome with "I'll try".  The thought process that you used to do something but now it's just too hard so you give it up needs to get drop kicked out of your mind.  Yes, it may be harder, it may take longer but just keep trying if you love it enough.  The assumption that something you've never tried before can't be done shouldn't be there, because you just don't know until you try.  This applies in all areas of ones life, socially, physically, mentally.  And not just for people with Parkinsons.


Recently our Parkinson's group tried a boxing class for therapy, it was very well received by the group and 11 people came out to literally kick some Parkinson's ass!  And that they did!  From young onset like myself right up to senior with severe tremors and every single person gave it their all!  Some that were there hadn't done any real form of exercise in ages and they worked their butts off.  I'm always preaching about how the studies prove that exercise is the only proven way to slow the progression of PD.  If you are told there's this miracle fix that can ensure your body works the way it does (or maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn't you beg me for the secret?  Well, it's no secret, you just have to get up and move the more the better.  If you say you "can't" run anymore "try" walking.  If you say you "can't" do aerobics "try" water aerobics.  "Can't" handle impact on your feet "try" biking.  Your balance is bad and you say you "can't" because you'll fall, then try a stationary bike with a good seat, or chair yoga!

The thing is we all CAN exercise in one form or another.  The key is to being open to trying new things.  Boxing isn't for everyone but those 11 people came and they "tried" and I bet you that many of them were worried they couldn't do it, but they did and they all want to do it again!  It's awesome and I shed some tears on the drive home that day because I was so very proud of all of them.  I horseback ride once a week for therapy, it works on my balance, leg strength and posture.  All serious issues with PD, so my instructor and I are planning a "Parkie's and Ponies" day soon.  It won't be for everyone but just "try" it.  Do not assume that you can't do it no matter how far along you are in your progression.  There are some super lazy horses out there that you can hang out on! 

The reality is that many of us tend to get bored of exercise.  If you're that type of person than you simply have to "try" more.  And you know what, some things even if you love them are GOING to be hard, way harder than they ever were pre PD, but it does not mean you cannot do it, you may not do it as well, but just do it to the best of your current ability.  I am back doing bootcamp again and every time I register for a round of it it's harder than the last.  However I refuse to say I "can't", I have to modify all kinds of exercises because my body just isn't able to do certain things but that's ok.  It's hard, really hard but when I do it and stop saying I can't the benefits far outweigh how tough it is.  I feel better, my mind is less forgetful, my sleep has a slight improvement, my body works better and my medication seems to last longer so I have fewer crashes.  It's hard as hell but it IS worth it.  In fact since finally listening to my movement disorder neurologist & adding a second medication of Pramipexole to my Levodopa I have been able to get back exercising harder like before, something he told me would happen.  I struggle with listening to my doctors advice sometimes because I hate pills and I hate progression so I fight both sometimes not to my advantage. I'm working on that.  But between that & exercise I was able to go from a 2 on the stages scale (which is about where I was at last summer 5 being the worst) back down to a 1 as of my assessment last week!  Whoop, Whoop to that!  So do not tell me you "can't" improve because if you work hard & "try" you absolutely can!  I'm not saying you should all go sign up for a bootcamp, no it's not for everyone but find something that is hard for you but that you CAN do because you are determined to not give up and you'll try, try and try again... 

Variety can be the spice of life and as long as you are not giving up and you keep trying than you are a success story!  Trust me your body, your mind & that damn old friend you never wanted Parkinson's will thank you for it!
BE YOUR OWN SUCCESS STORY....
INSPIRE SOMEONE ELSE TO 'TRY'!

Our first (of many) Parkinson's Boxing Class!
Not one of the 11 people with PD in this picture said "I can't" that day,
they all tried & they all ROCKED it!
 
PD Boxing Day participants & the great crew at Island Impact Martial Arts & Boxing who led us!
 
Keep trying new things, think outside the box!
 
 
 
Radio Interview leading up to it:
 
 

 

Apr 9, 2016

"One's dignity may be assaulted, vandalized and cruely mocked, but it can never be taken away unless it's surrendered" Michael J Fox

I love that quote, because isn't it true?  We can have all kinds of things thrown our way in life both good and bad but at the end of the day we get to choose our attitudes about our circumstances each morning our eyes open.  We get to choose if we're going to surrender or we're going to fight.  A fellow Parkie friend of mine said to me this week "everyday before we go to bed we should ask ourselves the question, did I get better or worse today?  If we got better we need to get up the next day and do it again, if we did not we need to make changes."  So simple yet profound and yet how many of us actually look at our daily life in this way?

April is Parkinson's Awareness Month, so no better time for events that bring Parkie's together and help raise such awareness.  I had the pleasure of going to the Maritime Region Conference of Parkinson Canada in Halifax, NS last weekend.  It was my second conference and packed full of great information, captivating speakers and great social time with other people with Parkinson's.  It was wonderful to reconnect with some friends I made at the conference last year and meet some new ones. 

Aside from the great information there are three moments/stories that stand out from that weekend for me in particular and they weren't talks from scientists or presenters.  The first being a lovely lady I had the pleasure of meeting from Cape Breton.  I did not ask if I could use her name so in an effort of respecting her privacy I won't, but I know you're reading and you know who you are!  As I entered the room for Saturday's conference in my usual Parkie style wearing my 4" stiletto's (thank you horse back riding therapy for keeping me in my heels so far) I noticed a woman looking right at me as I approached.  When I got close enough she grabbed my arm and said "You're the one that writes the blog about PD!"  I said that yes that was me to which she responded, "I knew it the moment I saw your high heels!"  I had to chuckle at that and given my two loves aside from my family are wine and heels I thought this was great.  She proceeded to tell me that she reads every word of my blog and that it inspires her, that she greatly appreciated my honesty even about the hard stuff.  How on days she finds life hard my words lift her up and make her feel better, and that she knew I write to spread awareness that PD is not just for old people that it truly helps older people too (although she didn't look very old to me) and to please never stop writing.  Well to say I was emotional would be an understatement in fact writing about it again now has me tearing up.  What a way to start the day, crying!  However it was a touching moment for me to hear that this little blog gone wild that I started as a 'journal' per say to get things off my chest is actually helpful to other people is a true joy.  I'm honored that you let me into your life and am always grateful when I hear from people who read it.  So to you my dear, thank you for your kind words and I look forward to seeing you again and talking to you soon!  Keep fighting the good fight!

The second moment that yet again had me tearing up was this fine woman Cheryl.  We sat together last year at the conference and what a lovely woman she is.  She confided that she was at the conference in secret, she was trying to hide her diagnosis from pretty much everyone.  Worried in particular about how her son would take the fact that she had PD and trying to shield him from the worry.  We spoke a lot that day about telling our children, I felt sad for the weight of her diagnosis she must have been carrying around on her shoulders when that burden could be eased by support from loved ones.  I urged her to tell her son, knowing of course as a mother nobody knows our children better than we ourselves do and that she should do what she felt was right.  However I reminded her that kids are perceptive and that chances are her son knew something was different about Mom.  Well, when I saw her this year one of the first things I wanted to know was if she was there in secret... With a giant smile on her face she said to me "everyone including my son knows where I am today and that I have Parkinson's Disease!"  WOW... I was soooo incredibly proud of her and tormented her that I was thrilled to hear she was finally out of the "Parkie Closet" as I always call it.  You could see the peace and relief in her as she spoke of it.... And with her permission I share this photo of her and I, out in the open, not ashamed to have PD and no longer trying to hide it!!!  I love it, and love you Cheryl for your courage, thank you for letting me be some small part in this big victory for you!  I hope some of you reading this that may be hiding your diagnosis may find courage in Cheryl's story.

 
 

People with Parkinson's fight hard, some give up sadly but I think the vast majority of us are in it for the long haul trying to find ways to live well despite the disease.  Stories of their successes and overcoming obstacles are truly inspiring.  My friend Peter who heads up our monthy Young onset PD video calls for support could barely speak to be understood when I first met him.  Sadly PD had taken control of his voice and often he would have one of us co chair our meetings because he'd get stuck on his words.  He started music therapy for his speech and the transformation is a beautiful thing to have watched.  He no longer requires a co chair, if he starts to get stuck he simply taps his fingers and talks to the beat, or sings the words and they come out clearly and beautifully!  I often tease him if he gets stuck telling him to serenade me and he always does when I ask.  The brain really is a remarkable thing how it can be retrained if you put the effort into it like Peter has!


My point of these stories during PD Awareness month is that you should NEVER give up while we all fight for a cure.  We all have different battles with PD, but we all have it in common.  And if you think staying in the Parkie closet or steering clear of support group meetings because they either scare you because you're young (I get it) or you think you don't need them let me tell you, they are great, even when it's scary.  We learn from each other, we inspire each other, we motivate each other to do better.  WE are a community of capable, great people who can still achieve amazing things and do not ever let the disease tell you otherwise.  Find a Parkie friend to lean on, you can help each other through the tough days because as wonderful as your family and friends may be, sometimes you just need someone's ear that actually understands the challenges you face and lets face it; you don't want your love ones to understand it because you don't want them to have PD.  But you do, you didn't choose it but you can choose how to live with it!

So live on my Parkie friends, fight hard, find the joy in everyday, don't give up and keep inspiring each other!

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~

Feb 10, 2016

What you do/happens after being diagnosed with Parkinsons

I guarantee you that not one of us in the world who have been diagnosed with any disease ever thought it would happen to us.  Whether you live a healthy lifestyle or otherwise nobody sits around thinking "someday I'm going to have Parkinsons".  For those of us who have heard those dreaded words from a movement disorder neurologist I am sure you will agree that it was a life changing moment.  Or as I once heard at a conference a catalytic moment in your life.  Regardless of how you dealt with or continue to deal with your diagnosis, positive all the way, lock yourself in a room and feel sorry for yourself or a combination of both; there are things that will most likely happen to you, or you will do after your life changing, catalytic moment occurs. 

1.  You will throw a pitty party
It may be right after your diagnosis when you're in shock and scared about your future because you just don't know enough about the disease yet.  It may be long after when you hit a point where you know you've progressed in the disease.  Or it may just be a random party that happens here & there because your symptoms get the best of you.  The reality of it is, even the most positive person is bound to have days where they feel sorry for themselves or are frustrated that this particular day is just way harder than the already hard days.  Even the happiest of attitudes are going to have a moment where it's just hard to find the silver lining or see the glass as half full.  And you know what?  That's ok!  The key is to not let it drag you down day in and day out, have your pitty party.  Kick, scream, throw a fit just don't let it last for more than a couple days.

2.  You will try and hide it
Even if you are an open book like myself and the world knows you have PD and you're ok that they do, you will hide at some point.  You'll try and 'hide your symptoms'.  If everyone knows you have it this seems ridiculous; but even if you're "out of the Parkie closet" you're bound to have a time where you're either just sick of your symptoms or embarrassed of them.  Or worse yet, trying to save someone else from feeling uncomfortable.  You may put your tremoring hand in your pocket so nobody sees it, you may choose to stand rather than sit so they don't notice you're fidgeting as much.  Or perhaps you are the 'Parkie in the closet' and you're trying to hide the entire diagnosis from your family, boss etc...   Regardless each and everyone one of us will have a moment where to some degree you try and hide it.

3.  You will lose
The sad reality of life is that any major catastrophe or big change in our lives tend to show us who is genuinely there for us.  It could be divorce, moving away, having kids or having a diagnosis of a disease like Parkinsons.  No matter what it's for certain that you will lose somebody you love (or at the least have your relationship change in a way you don't want it to) and it's hard and it sucks.  After all when we are going through something as devastating as being diagnosed with PD that's the time in life you need your friends and family the most.  Sometimes you need to be patient because your diagnosis scares them and they don't know how to react, however that doesn't make it right or easier.  Sometimes the hard truth is that they just weren't as in love with you and your friendship/relationship as you were them.  But when you would run out in front of a bus to save your bestie, friend, spouse or family member and they run away like they are being chased by a lion when you get diagnosed it's a hard pill to swallow.  You will most likely mourn the loss like a death and it will be hard.  You will also most likely hope that someday they come back to you and perhaps they will, but you need to be ok with it if they don't.

4.  You will gain
On the flip side of #3 you will be shocked at the friends, love & support that you gain and are blessed with after your diagnosis.  There will be people you never expected to be there for you who suddenly are!  People who will show you in more ways than one that you matter to them and they are there for you on your journey, good bad or otherwise.  Not because they feel obligated but because they want to support you.  It will warm your heart in ways you never expected, hold onto those people because they are authentic and will make your good days amazing and your bad days great just because they are there for you!

5.  You will hurt
Not to be a Debbie Downer in this post, but refer to #1 I guess!  However it's true, you will most likely hurt physically from stiffness or PD in general.  Most people with PD experience pain in one way or another, but the hurt that you don't expect is the emotional hurt.  Many people with PD have depression or anxiety as a symptom of the disease.  Yes of course having the disease in itself can be reason enough to be depressed, but the reality is these mood changes and emotional hurts are a part of the disease itself.  And when you were always a positive person who didn't possess any of these traits it can be difficult to understand how to cope with them.  But know that it's normal and you will be ok and do not be afraid to talk to your neurologist about it.

6.  You will read too much or nothing at all
You'll become one of two types, the researcher who thinks knowledge is power.  Who will read every book there is about PD, read every article out there, every piece of information you can get your eyes on in an effort to stay informed and keep yourself as healthy as possible.  OR, you will not want to know another thing about it and keep living your life as is, figuring it out for yourself along the way.

7.  You will be blessed
I'm a true believer that everything happens for a reason, even the bad stuff.  After all if not why would bad things happen to good people?  Although having Parkinsons wasn't part of the plan and it's certainly not something you would have chosen there are gifts to be had from it.  The PD community is amazing, welcoming and full of care & support for each other.  Reach out to them and you'll see it was worth attending a support group meeting, or connecting online with other people who have it.  They can give you advice, suggestions and simply be there for you knowing what you're going through.  We all have a purpose in life and if the PD card was dealt to you (or any other bad card for that matter) look for the gifts that will come because of it.  Somedays it may be tough to find them but I assure you they are there if you're open to finding the blessings.


Although some of these things seem negative there's a positive in them all if you look hard enough.  The reality is that in the bad things you will find what's really important to you in your life.  Your perspective will change for the better because the little things so many of us fret or stress about just won't matter anymore.  We will focus on what's important moving forward and that could be a variety of things big or small.  You may have exercised in the past because you wanted to be a certain size or weight where as now that no longer matters to you and you are free of the numbers on a scale.  Because you now exercise to keep your body working properly!  You may have been the social butterfly that attended every event/party there was because you wanted to be surrounded by a ton of friends always.  Where as now you prefer to keep your circle tight with genuine people that care about you and you love to be around, this is likely much more fulfilling!  So my point being rather than focusing on what you lost or the negative "thing" you'll do or will happen to you look at it in more depth and see how the flip side of it can mean a blessing in disguise and a more enjoyable life experience.

 The most important thing you "should" do after your diagnosis is find the Joy in your Journey,
it's there... I promise...