Dec 31, 2016

It's all about perspective...

"If you don't like something, change it.  If you can't change it, change your attitude" Maya Angelou

As we embark on the newness of a fresh year, rather than the typical goodbye 2016 I'm kicking you to the curb cause you suck let's instead say well hello 2017 what shall you bring!

I've been working lately on changing my perspective about things, situations, people.  About myself and having Parkinson's & Dystonia at such a young age.  My motto shall remain "Screw You Parkinson's" as I don't see it in a negative way, I see that in an 'I'm going to fight you and not give up' kind of way.  However the last few years have been tough, spending 15 fearful, confusing, sad months wondering why my body wasn't working and why day by day it continued to get worse was horrible.  Getting diagnosed although I joke that after that long road of the unknown I said thank you and was grateful to finally know what was wrong, it was still awful.  Nobody has a plan in life to get a progressive, incurable neurological disease let alone two in your mid 30's.  Dealing with progression and the fact that I started out in the spring of 2013 with one prescription and 4 pills a day and now as 2016 comes to a close I have three & 18 pills a day.  Although the outside world doesn't see it for the most part because my constant tweaking and additions of medication keep me looking and functioning at the same level as before for the most part it's a real hard pill to swallow, pardon the pun.  Progression is and will continue to be a real struggle.  Realizing that I did not cope with having to give up my career like I tricked myself into thinking by replacing it with being a stay at home Mom; only to have my youngest start school this fall and reality slap me in the face was eye opening and a challenge.  One which I'm still working on.

Now how does one take all that negativity and see it as positive?  Well it's a work in progress and a one day at a time thing.  The pitty party days shall remain, the days of being in a 'fog funk' as a dear Parkie friend of mine called it shall remain.  But as I said to him it's a matter of clearing the fog before too much time passes to see the sun again.  There is always joy in the journey as I always say but sometimes it's harder to find, balance if you will of good and bad.  So here's my list on the flip side:

1.  That long diagnosis period taught me to listen to my instincts, gave me confidence to never let someone else (Doctor or otherwise) sweep it under the rug when I know better.  To be my own health advocate and that sometimes you have to fight for yourself because nobody else is going to do it.

2.  Getting diagnosed taught me to have courage and learn acceptance.  Acceptance in particular is something I needed to get better at in all areas, accepting of disease, of offers of help, of how other people differ, accepting my own life & situation etc...

3.  Dealing with progression taught me patience, teaches me to slow down and learn to say no as sometimes I have to take care of me first, to accept help.  I've never been good at putting me first or accepting assistance, I'm still a work in progress in that regard.  But most importantly to savor life's moments and not take time or memories for granted, not push something off to another day.

4.  Giving up my career, well being forced to is a better term is still one I have a tough time changing perspective on.  However it has enabled me to grow in many ways.  I've been able to take better care of my health and body and in turn help slow the progression by being able to exercise when I'm "on" where as if I was working I'd never be able to.  I've been able to help reduce my cognitive impairment by taking up playing the fiddle & picking the guitar up again after 20 years.  It has allowed me to continue to volunteer my time to groups & causes that mean something to me as I can do it when I have the energy and ability to do so on my own time.  Most importantly it gave me more time with my girls, not simply the crazed supper, bath time and put them to bed in the evenings after a work day.  It taught me to appreciate them more and my time with them. 

So I suppose when one changes the way you look at things it's not all that bad is it?  Perspective...  It doesn't mean your situation, diagnosis or whatever you're dealing with isn't rotten but if you change your perspective perhaps you can find the good in it. 

"The smallest change in perspective can transform a life.  What tiny attitude adjustment might turn your world around?"  Oprah

So with all that in mind as opposed to previous years and me saying to hell with you 2016, there were too many hardships and I can't wait for you to be gone and a fresh year to start.  I'm choosing to be grateful for all the lessons, the good times and the bad that the year has brought.  The lesson's I've learned some of which were very hard.  I've gone from wishing it gone to wishing it would slow down.  Time for a Parkie that's progressing moves FAR too quickly and I'm only now seeing how wishing a year to be over and a fresh one to start is rushing time.  It flies by on it's own there's no need to wish it away faster, so I shall breathe and take it all in and hope that I can focus on the moments and not rush things.  After all as time goes on I'll continue to get slower so that should be easy right?  Ha!  My 8 year old daughter refers to me when my meds aren't working as a tortoise.  When I asked her why a tortoise she simply replied "because turtles are slow but tortoises are slower!"   Perspective from an 8 year old!

So may 2017 be a year full of balance, that you may see that any bad that comes your way has something good in it as well.  That it may go by far too slowly.  And that you find the joy in each and everyday.

Dec 24, 2016

Merry Christmas my Parkie friends & here's to a healthy joy filled 2017

On this Christmas eve and as another year comes to an end it's always a time of year where people tend to reflect on what life brought their way and what they hope to achieve in the coming year.  2016 like the last couple has had it's challenges, it's good times, it's rotten ones, lesson's, struggles and yes continued joy in the journey. 

I've yet again had to experience progression, that dreaded word that those of us with the unwanted gift of the progressive neurological disease of Parkinson's receive and in my case Dystonia's progression as well.  To the outside view looking in on my life, watching my movements when I'm out and about, life with PD likely doesn't look much different to them.  My tremors are still usually non existent to the untrained eye, I'm still sporting my high heels (which I will never give up  tremendous fight), I'm still 'on the go'.  I'm still horseback riding for therapy once a week, I've taken up playing the fiddle and started playing guitar again after 20 years.  I'm busy with my kids, coping well with a husband on the opposite end of the country where he works.  I'm doing very well for a person with Parkinson's Disease.  And this is all great and I count my blessings for all of that.  However what the untrained eye doesn't see is the internal tremors, the ones nobody sees but I can literally feel my body vibrating from the inside out almost always.  The untrained eye likely doesn't notice the rare times I do have significant tremors but keep my hands in my pockets or keep moving/walking so while still they aren't as noticeable.  The untrained eye doesn't notice me wince with pain from Dystonia that's plagued my muscles in my arms, hands, calves & feet when I try and exercise or do certain things.  The untrained eye does not see my morning shuffle when I first make my attempt to get out of bed (sadly usually at 2, 3 or 4 am most days).  The untrained eye doesn't see me cry on the inside when the stiffness gets so bad it's painful.  The untrained eye doesn't see the struggle & torment I sometimes experience emotionally while walking this journey with YOPD.  The untrained eye doesn't see my eye roll of frustration every time the medication alarm goes off on my phone to take any of my three prescriptions 8 times a day totaling 18 pills daily in order to enable me to have said untrained eye not see any of the struggles. 

Now that all didn't sound very Christmassy and joyful did it?  However perspective is important.  Although I struggle with too many pills going down the hatch and all the things noted, there are such important lessons and joy in all of it.  I hate the pills but I am so grateful for them too, they are a gift, another one I wish I never wanted/needed but a gift none the less.  (See an old post about the unwanted gifts of PD  If it weren't for all those medications the view looking in would be quite sad likely, full of pity even.  It would be easier to see what Parkinson's is really like, how horrible it can be as you would watch me struggle to pick my feet up off the floor to move forward or saw me hunched over like a 90 year old, or worse saw me unable to walk unassisted, if you saw me barely able to feed myself because the tremors were so bad and so on.  Because the reality is, that would be my life without the medications.  So when thought of in that respect what a glorious gift it is!  I shall try and remember that comment the next time I am rolling my eyes at a med alarm!  There's also lessons in being strong even when you don't feel like it among all that.  I may have fear and frustrations but I don't want my children to grow up that way, so it teaches me and they remind me daily to keep going and focus on the joy in the day rather than the struggles.  It's all taught me to focus on blessings and try and let go of things that we shouldn't hold on to.  I suppose in a sense although not a death sentence like some diseases can be it teaches you to try and live life to the fullest, experience things that you might put off til another day but you don't as much now because you aren't sure you could do it as time goes on.  It teaches you to not wait for certain things, to be present in the moment more. 

I'm a very lucky woman, I have an amazing husband that puts up with my torment and my stubborn ways and loves me despite anything negative, loves me even with Parkinson's and an unknown future.  I have two beautiful girls that are smart, funny, caring and keep me going.  I have an almost one year old miniature dachshund named Xena that I've always wanted & keeps me company when my husband is away at work and my girls are both at school as now that I can't work that can be rather lonely.  I have a roof over my head, people that care about me and there's so much joy in all of that.  It makes my heart hurt a little for the friends I have with Parkinson's who aren't as blessed, who don't have all that to keep them going and keep them feeling uplifted on the days where we want to give up.  And trust me no matter how positive I or any of us struggling with Parkinson's or anything else for that matter is, we all have our days where we just don't think we can go on and keep fighting.  A Parkie friend of mine said to me just this week while having one of those days "sometimes you just need to have a cry and vent to someone who gets it.  Because you just can't always do that with your family or close friends because then they worry too much.  They think you're losing it or can't cope anymore."  And this is so very true, I can assure you that if you have a loved one with PD chances are they fake it well for you, a lot.  So just because they don't complain a lot or seem down be mindful of that, don't take their positivity for granted.  Take time to pick up the phone and call just for a chat, just so they know you are still there for them.  Take notice of their changes socially, emotionally and physically and talk to them about it I guarantee you they'll appreciate it.

I shall end with this... We are all lucky, we only have one shot at this life on earth and regardless of if you have Parkinson's disease or what the journey has thrown your way it can be a beautiful joyous life.  As Christmas comes tomorrow focus on your blessings, seek the joy you had in the year and look hard enough to realize there was much more of it then there was bad days.  As you laugh and enjoy time with loved ones, remember that not everyone is so fortunate.  Some are struggling at Christmas especially with loneliness, pain, loss of loved ones etc... Reach out to anyone you know that might be in that place, make sure they know you care and be grateful for all you have to smile about.  There is a lot in this life that is out of our control, but the one thing you can control always is your attitude, what you focus the majority of your energy on and how you treat others.  Be kind to one another as Ellen says, and in that be kind to yourself too.  We are often far too hard on ourselves.  Because remember there IS Joy in each and everyday, even the ones that are rotten and make us feel like we are losing the battle.  It is there, if you look hard enough for it on those days you will find it, even if it's a tiny piece of joy.  And on the good days fill up your bank with as much joy as you can, store and put it in a gift box to hold onto for the days where you may need a little extra.

To my Parkie friends around the globe this Christmas and as we approach 2017.  I wish you happiness, courage, new treatment options, medications that work so that those 'untrained eyes' around us see how well you're doing, strength and most importantly I wish you much joy.  I hope despite any struggles this year has presented you with you can find the lessons in it and move onto 2017 with a fighting, winning attitude.  I wish you health and happiness always and most importantly I say to you, YOU are not alone... We Parkies stick together, it is a community like no other, it's a beautiful gift which I am grateful for this Christmas and each day.  And I say a very sincere Thank you to those of you I've come to know because of this journey, you are a blessing to me and I thank each one of you who have reached out to me and have given me strength and a person to vent or cry to on the days where I needed it from someone who understands.  To the loved ones in my life, family & friends thank you for your support, love, encouragement and for being there for me even when I can be difficult.  Thank you for your offers of help even though I need to work on being better at accepting them.  Thank you for the love.

From my family in tiny little Prince Edward Island on the east coast of Canada to yours where ever you may be in the world... Merry Christmas & Happy New Year!

Dec 2, 2016

DNA Discrimination... Are you serious?

Yes you read that right!  Is it possible to be discriminated against based on your unique DNA?  Well in Canada sadly it is, but hopefully not for much longer.  Hopefully the members of parliament for our great country soon have a unanimous yes to vote for Genetic Fairness Legislation.

Let me explain what this is all about, and let me first tell you that this is not only a Parkinson's issue, this is an issue that affects ALL Canadians, healthy or not.  You see, Canada is the only Country in the G7 that does not have genetic fairness laws.  We are not allowed to discriminate against race, gender, age, disability etc... but we can be discriminated against for our DNA.  What this means is that an employer can not hire and/or not promote someone because of their Genetics.  An insurance company can discriminate against us for our Genetics, potentially denying or increasing the premiums of that individual.

Now you're thinking ok that may be crazy but how does this affect me?  I explain it like this, lets say you have a family member (parent, grandparent, aunt, uncle, etc...) who has heart disease or perhaps type 2 diabetes etc...   Maybe they are morbidly obese, smoke, do not exercise, eat horribly and basically do not take care of themselves at all and this has resulted in said health condition.  Would it be fair for you to be denied life insurance or given a higher premium than someone else because of that family member?  Of course it wouldn't, but that's the reality in Canada.  An insurance company, employer etc... can essentially discriminate against you for the 'possible' perceived future disability you may have.  This is ridiculous and of course who's the only group fighting this legislation?  You bet ya, the Insurance companies!!!  They're claiming it will result in higher insurance premiums for all Canadians and all kinds of ridiculous things.  When the reality is again Canada is the only country in the G7 that does NOT have this type of law and I'm pretty confident in saying that the bottom line isn't hurting for any of the insurance companies because of it.  I don't see any of them going bankrupt because the US or other countries have these laws to protect their citizens.  So if you are buying the crap the insurance companies are selling in regards to Bill S-201 then I have some ocean front property in Arizona I would like to sell you at a bargain!!!

I have two daughters Samantha is 8 and Izabella will be 5 in just a few days time.  The likelihood of them developing Parkinson's is likely no greater than it is my neighbor (after all I'm not contagious).  So why should they be denied life insurance or medical insurance or pay a higher premium because their mother has PD?  Why in the future should they be denied a promotion or career opportunity because there's a "chance" they could get PD?  We are not allowed to discriminate against someone for a visible disability and yet we can for an unseen one.  This is all really quite ridiculous and it needs to change now.

I urge you if you are a Canadian share this blog post, tag your local MP's in it on social media, send them a letter or email.  Explain to them that this legislation needs to be passed AS IS, no changes required.  It's our MP's jobs to work for their constituents not to please the insurance companies that are donating to their party.  This has been years we've tried to get this law passed and our politicians should not have the best interest in a multi billion dollar industries at hand, they should be focused on the interests of Canadian's and what is right.  So please spread the word and we hope they do the right thing and vote YES for Bill S-201 with NO changes.

Please find a report from CBC who recently did a feature on this that I was a part of:

Canadian Ambassador's, the photo on the left is myself & my MP Lawrence MacAulay after a meeting in regards to genetic fairness legislation, Seniors Strategies etc...
Become a Parkinson Ambassador:

These sweet girls of my deserve to have access to insurance of any kind.
As do ALL Canadians!