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:
https://www.youtube.com/channel/UC1j96wgdc_JiNIrMgeTZjIA

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:  http://parkinsonambassador.ca/



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

Oct 25, 2016

What do you get when you cross Parkinson's & Dystonia?

You get a boat load of meds and a bit pissed off!  Dystonia & Parkinson's are both Degenerative Neurological Disorders.  You can get Dystonia as a disease on its own or as a symptom of Parkinson's.  For some reason people with Young Onset Parkinson's are more likely to develop Dystonia.  YAY there's that gift that keeps on giving right? 

It's been 2 years and 36 days since I was officially diagnosed with Parkinson's.  2 years and 7 months since first being told 'I think you have YOPD" and subsequently starting treatment.  However it's been 3 years & 4 months since my symptoms started & the road to figuring it out began.  In that period of over 2.5 years since starting treatment I'm now on my 3rd medication change/addition or increase.  A tad bit frustrating to say the least.  However the silver lining this time around was I was expecting it, it wasn't a denial based shock for the first time in my 7 trips to the Saint John Regional hospital for diagnosis and/or follow up appointments.  Sadly I've gotten worse at least half the time.  Of course I've gotten worse it's degenerative, progressive, those words we Parkie's hate because it's the one time "progressing" isn't a good thing.  It's not like playing the guitar and progressing that's great, this not so much. 

This bi annual 704km nearly 12 hour day that I make twice a year to see my Doctor was different.  It was the first time I had a "list" of all the negative changes my body has been having.  The first time that it wasn't him asking a question to discover progression, but me knowing full well I had indeed gotten a bit worse and wasn't in denial about it.  Hate it yes, but not in denial.  My forearms have begun to feel very tight and sometimes pain or ache much like my calves, hands & feet all which have been plagued by Dystonia.  My ring finger on my right hand has started to pull in to the palm of my hand and often will twitch in that direction which is painful.  My right leg has started to have noticeable tremors when standing still.  My right foot started to tingle months ago in between my big toe & next one and up the top middle part of my foot, it now is numb all the time.  It feels like when you go to the dentist and get frozen.  My apathy without a doubt is much worse and I'm struggling with some emotional issues still like social anxiety and my new loss of identity having both my girls in school, being unable to work and home alone.

The long and short explanation of almost all of the above is the continuing gift of Dystonia.  I have most definitely come to the conclusion that although Parkinson's Sucks, so does Dystonia and it in fact can be worse as it's painful.  My forearms are Dystonic and there's a tendon in the right forearm that's significantly twisted and that's what's causing the pulling in of my ring finger.  My caves are so dystonic that although the numbness isn't a result from the brain he figures it's a direct result of the dystonic muscles one of which is likely pressing on the nerve to my right foot.  The increase tremors & stiffness are simply PD itself progressing.  So the result of all this?  Yup, you guessed it my medication alarm will be going off more often.  I'm not getting enough levodopa so I have to increase a full extra dose a day starting this morning to try and keep my dopamine levels more consistent as There's too much time in between doses,  I'm to try that for a week and then call the PD nurse for a discussion on how it's working.  If it's a drastic positive change perfect, if not I must increase my dosage of pramipexole to 3 pills three times a day rather than 2 pills.  If we make that increase it should also help with the apathy.


On a positive note.... because remember even when things are rotten there is always a bit of joy in every day it's just sometimes really hard to find.  However I've been playing the fiddle and taken up the guitar a bit again.  I can't play the guitar long it hurts my dystonic hands but the fiddle has a small neck and I can play it longer.  Since starting to play music I've been doing that at night rather than watching TV after the girls go to bed.  I've noticed after doing that for a couple of weeks that I've been getting more sleep.  Rather than my usual 3-4 hours a night I've been getting more like 5-6 consistently and sometimes even 7.  I asked him if it was a coincidence and he said absolutely not.  That I should continue to play music that there are tremendous amounts of research proving music therapy can be very beneficial in anyone but particularly neuro related sleep issues.  So if you are having trouble like probably 90% of other Parkies sleeping, maybe take up an instrument, or listen to soothing music for at least 20 minutes before bed. 

I shall end on this...  I choose not to throw a pitty party this time.  I choose to remain positive and find the joy I each day.  Our circumstances may be entirely out of our control but our attitude daily is entirely up to ourselves.  Wallowing in your negative circumstances in life whatever they may be will do nothing but make you feel worse and when you have a crap load of rotten stuff to deal with why in heavens name would you want to feel even worse?  It's ok to be pissed off don't get me wrong and I most certainly am often at the cards dealt to me, but that being said life is precious we only get one chance at it and do you want to spend it being angry or do you want to spend it joyfully?  So I shall choose to laugh at the crappy circumstances, make light of my situation because that's just how I deal and I think laughter is great medicine.  I will choose to be grateful for the medication that's available to me that allows me to live my life not without struggles but where I still am fortunate enough that most people don't "see" my symptoms or how I'm affected daily.  If it weren't for the many meds I take I would not be able to walk properly, I would often struggle to get out of bed if I could at all, I would be in severe pain 24/7 and life would be pretty bad.  So if I think of it in that respect I am indeed very lucky and as my many medication alarms go off in the run of a day on my phone I will remember to be grateful for the pills that make my life possible while rolling my eyes! 

I mean really, how lucky am I?  Two beautiful girls to "play" with everyday!
That's a lot of Joy!


If you'd like to know more about Dystonia you can view a previous post about it here: http://natashachronicles.blogspot.ca/2016/05/lets-talk-dystonia.html
Visit a Broken Body's Journey Facebook page:  www.facebook.com/brokenbodysjourney


Oct 18, 2016

Brian Grant ~ Life with & Parenting with Parkinson's ~ A candid conversation between 2 Parkie's

I had the utmost pleasure to meet former 12 year NBA player Brian Grant while at the World Parkinson Congress.  On two occasions we had brief conversations and photo’s taken.  I was particularly struck on the fact that despite his insane schedule that week with the congress itself and media given it was happening in his home town, he never rushed a conversation with someone with Parkinson’s that wanted to meet him.  He spoke on a couple of occasions and participated in one of the panel sessions on living well with PD and he was genuine, honest and very down to earth.  I watched from afar on several occasions his willingness to oblige handshakes and photo ops and he was attentive to each person that crossed his path.  I watched this with great respect.  In one of our brief conversations I told him that he was very gracious to the countless people there that wanted to meet him and that I thought that was extremely kind of him.  He told me that when at other public events if he’s tired or his tremors are bad or he’s not feeling great he has the ability to simply leave.  However that at the WPC there was no way he could or would want to do that, he said he respected the fact that people with PD wanted to meet him and speak to him and he appreciated that they wanted to.  He said simply “how could I not take the time for them?” 
 

When I was given the opportunity to “interview” Brian for an article for my blog I was over the moon!  There was no way I would refuse that once in a lifetime chance.  We were originally set to meet in person at the congress to have our conversation however things were hectic for him and I told his assistant that I’d be quite happy to chat with him after the congress was over and things settled down for him.  I was exhausted so I could only imagine how he was feeling given his schedule that week.  And well, it’s pretty cool to be able to say that Brian Grant has my phone number, I’ve told a few people “Brian called the other day we had a great 20 minute chat” Ha!  I’m considering us friends now, but at the very least he’s incredible and an inspiration to the PD community, we are lucky to have such spokes people to bring awareness to the disease, particularly that it’s not only old people that get it like him and Michael J Fox.

 To give you a brief background, Brian was diagnosed with YOPD around 36 years of age, he had recently retired from his NBA career.  It started with a slight wrist tremor while still playing in the NBA where he joked in one of his speeches that upon asking one of the team doctors about it and what it was they simply responded “old age” as when you’re a professional athlete that’s considered old I suppose.  Brian has 6 sons and 2 daughters and has been married and divorced twice.   Below you'll find the questions I posed to Brian.


How did your children handle your Parkinson’s Diagnosis?

My older boys 20’s & late teens handled it alright.  They started to dig into finding out what Parkinson’s is and how will it affect Dad.  When they ask me things I try and be honest and answer as best I can.  I tell them about new meds and things that can help life be better with PD and about dyskinesia’s and other side effects.  They’re at the age where if I say something like that they run to the internet to Google what dyskinesia is.  My now 13 & 14 year old daughters were quite young.  They’d ask ‘why does your hand shake?’ and I’d tell them because I have Parkinson’s.  When they’d ask what that was I’d simply say it’s when your hand shakes.  And at the time they would simply associate PD with a hand tremor.   I always try and be honest with all my kids about it but at the same time I don’t want to scare them.

Do you think overall it’s important to involve your kids in your PD journey?

For me it was important, I can’t really speak for you or anyone else, but for me I found it to be very important because if I’m not telling them what PD is they might go to the wrong web site or the wrong friends.  I want to give them my definition of it and what that means for me, because otherwise they could go to their friend who’s Grandpa has it and what it means to them might be something totally different.  I want to make sure the information they get comes from me.
I even joke around with my daughter sometimes and I’ll say ‘can you get me another sprite’, why can’t you get it Dad? ‘cause I have the Parkinsons’.  I try and laugh at myself and allow others to laugh.  It’s a serious disease but as you know we have a chance to be around it’s not like stage 4 cancer or ALS or something.

Did you get any advice on parenting with PD from anyone you know with PD?

I didn’t get any advice specifically from Fox or Ali or anyone, but who I do get information from is Soania Mathur, a GP in Canada has a couple books out and anytime I have questions about the kids I always refer to her.   (Below you'll see a photo of myself and the lovely Soania www.designingacure.com/)
 

Do you think your Parkinson’s can enrich your children’s lives in some way?

I think it can in some ways because for me up until I was diagnosed I was like everyone else in the world, I was going to live forever, always be healthy but once you’re diagnosed with a life changing disease like Parkinson’s it changes your perspective, in fact it changed mine immediately.  So I don’t want to put that burden on the kids if they ask I’ll tell them but I’m not going to sit them down and talk about specifics right now.  Maybe someday I will as I progress.  They are involved in the foundation I don’t make them go but they attend every event we’ve had and they enjoy it, its fun.  They’ve always enjoyed participating in that stuff.  My older boys when they are home volunteer at any events and things we have.

What advice would you give to someone newly diagnosed with Young Onset Parkinson’s?

I would tell them to take the time for themselves before they try and help everyone else understand what’s going on with them.  If you just get diagnosed other than your partner, they need to know but as far as the kids and relatives and others come out at your own pace.  Unless there’s questions being posed to you, like why do you look like that when you stare at me, or why does your hand shake?  Things that aren’t normal to them and the doors open, then tell them.  But I would advise everyone to do that at their own pace and speed, to wait until you’re comfortable with it before you let everyone else in.

And what advice would you give to someone who is a parent and diagnosed?

The disease affects everyone so differently and we are all in our own unique situation maybe you’re in a marriage or a single parent.  The initial blow is so emotionally heavy, or at least it was for me.  I didn’t want to deal with it right away, but then again I was going through a divorce and was just retired there was so much going on in my life other than my diagnosis.  I will say this, once I was able to explain to my kids what was going on with Dad I felt so much better.  It was like a big weight lifted off my back, I didn’t care if anyone else in the world knew at that time they were the ones that mattered.  I was focused on how it was going to make them feel, I didn’t want them to feel bad or worry.  And another thing I focused on was I didn’t want to embarrass them.  Sometimes when I’m at games  and stuff and I get surrounded by parents talking, I’m tremoring and stuff and in my mind I feel like I’m embarrassing my kid when that couldn’t be further from the truth.  My biggest fear is embarrassing my kids because if I saw that I was it would devastate me.

As you mentioned we are all very different and our Parkinson’s symptoms are often unique.  What are your biggest challenges as far as symptoms go? 

The tremor definitely and my gait.  I’m assuming I’m walking normal but it definitely feels different when I’m walking.  And then there’s depression, I’m on medication for that which has helped tremendously.  Anxiety, here I am a public figure trying to be a champion for this disease and help defeat Parkinson’s and then get this deep anxiety that makes it really hard to go out and speak to people.  I’m sure you understand this (which I most certainly do) but it gets so bad.  My mouth will get dry, my eyes will get dry, and I start to tremor its crazy.

Do you think your career in the NBA can help you in living your journey with Parkinson’s?

It absolutely helps me; more importantly given I’m a retired professional athlete I know how to be in tune with my body where as someone else with PD may not be.  When something starts to happen with me that isn’t normal I think that must be Parkinson's.  I know how to train which can be a curse too, I know how hard it is I know before I even start to do it.  Sometimes I’ll think to myself I don’t have to do that, I don’t have to be in tip top shape.  I don’t know how to just coast and how just a little bit each day can be such a help, no no I’m full bore ahead.

I was watching an older interview you had done where you discussed that you weren’t sure “they” wanted to find a cure for Parkinson’s and other diseases given there’s so much profit in medications for our disease.  What are your thoughts on that today?

I think a lot of people make those statements, I still think everyone is trying to find a cure.  It doesn’t benefit drug companies to find a cure pushing forward.  I think they have their place within the Parkinson’s community because without them a lot of foundations couldn’t get their programming off the ground.  Not to mention we need their medications in order to survive and I’m thankful for those medications and hopefully someday when there is a cure they are instrumental in putting it out there.

What do you hope you can continue to achieve with the Brian Grant Foundation moving forward?

We’ve gone through some changes and they’ve been very good.  Right now our programming we have is our wellness retreats and our boot camps and also our nutritonal cooking classes.  Those are the things we are trying to roll out.  Our goal or at least my goal is in the next 5-10 years to be able to roll these things out in other cities where we go through things and organizations in those cities can adopt them.  That’s my dream!
 

We discussed anxiety and depression in a bit more depth and in asking me if I experienced it I told him that I never had an anxious bone in my body before, but now I suffer with what I refer to as social anxiety and there are times it can be quite bad, cause me to withdraw and yet be lonely at the same time.  I told him that I find it difficult to deal with the aspects of the disease that change your personality, that change all the parts of you inside that you always knew yourself to be.  And he told me how he feels the exact same way, that when he gets around a bunch of athletes or friends he was always in tune to the moment and what had to be done or what he was up to.  And the thoughts of depression or anxiety happening to him never occurred to him that it wasn’t that he felt negatively towards people who had those issues but he just knew it would never happen to him, until it did.   And now he has to change the way he thinks about all those things because there’s no surgery or treatment for these aspects of Parkinson’s disease like there are for the motor symptoms.  He explained how well depression medication works for him and made a huge difference but nothing truly changes how our identities and what we’ve always known to be ourselves being altered permanently. 

We also discussed candidly Apathy and I told him how my get up and go has gotten up and left and how it’s extremely difficult if not impossible some days to get motivated to do something.  That things I love I still procrastinate on to the final hour and I was curious if he like many others had issues in this area.  He told me that he finds it very hard to get motivated at times and he was often MIA in his own life space.    He spoke of how he always put his hand in his pocket or sat on his hands and all the things many of us do to hide our tremors and that a point in time hit when he told himself he wasn’t going to do it anymore that he didn’t care what people thought, but clearly he did and still does.  So sometimes it’s hard to get out there and be motivated when you want to do something when in the back of your mind you’re struggling with other things too. 

Our conversation ended with him asking me how long I have been living with Parkinson’s and a bit about my life which I thought was so kind of him.  I got the feeling that like myself this wasn’t an “interview” like thousands he had done before.  This was two people living with Young Onset Parkinson’s Disease, two parents trying their best to be the best they can be for their kids; two ‘young-ish’ people fighting a disease for a very long time to come that were simply having a conversation about life with Parkinson’s.  Or at least that’s certainly how he made me feel and it was pretty awesome.  We talked about how we are lucky, I believe we share the same opinion on that and that yes we have PD but it could always be worse.  He truly is an amazing man and a wonderful advocate and spokesperson for the Parkinson’s community and I’m very grateful to have had the pleasure of meeting him, speaking with him a couple of times at the World Parkinson Congress and having this lengthy conversation over the phone with him.  We ended our call with him thanking me for following his foundation and for writing a blog and told me to keep doing what I’m doing.  And that nearly brought me to tears hearing it from him.  How incredible and gracious is he? 

You can find out more about Brian & the work his foundation does at www.briangrant.org

If you look closely you can tell I'm wearing heels the second time
I spoke to 6'9" Brian Grant in Portland!  Ha! Ha!
 
 
To see more information and photo's from the World Parkinson Congress visit my Facebook Page
A Broken Body's Journey www.facebook.com/brokenbodysjourney
 
 
 

 

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....


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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