Dec 21, 2014

A year of reflection...farewell 2014, you will not be missed!

This has been quite a year to say the least.  Actually it's been a long year and a half because the second half of 2013 was when the journey actually started.  As we near closer to 2015 I am a different person than I was before, forever changed.  A new way of thinking, a new way of doing, a new beginning has emerged for not just myself but my family.

It was a year of shocks, realizations and soul searching.  I will never forget that day in April sitting in a Neurologists office alone 350 km's away from home when I first heard the words "I think you have Parkinson's Disease".  Although I knew my body was failing me and something was wrong that had never been something on my radar and to this day I can still feel the sensation like I was kicked in the gut and winded.  A vivid memory etched in my brain of me sitting in that room scared, shocked and yet oddly relieved that someone was finally figuring it out. 

Then in May when I was back again this time with my very supportive husband in that same building with a movement disorder neurologist who wanted to start me on a treatment plan for the disease still saying "think" or "suspected".  I remember leaving that appointment, prescriptions in hand torn up inside.  Having so much trouble getting my body to cooperate, so much frustration with simple tasks that it often would bring me to tears not understanding why.  Yet overwhelmed with a feeling that despite wanting those things to get better, not wanting the treatment to work.  Before that day in April I knew nothing about YOPD now a month later I knew far too much.  I knew that unlike MS and some other neurological conditions there was as of yet no treatments to slow progression.  I knew that it was a degenerative disease that would always get worse.   I knew a lot more about it than I wanted to and was torn with wanting my body to start cooperating again and not wanting it to so I would not have this disease...

Time went on, it was clear that I could not function in my life without my little yellow pills.  I started to get joyous windows of opportunity where I could do tasks I couldn't before.  An odd sense of gratitude mixed with fear would overcome me in the months to come.  Trying to prepare myself for what was to happen on September 19th, 2014.  The day where yet again I found myself in that same hospital 350 km's from home, alone but I thought mentally prepared for what was to come.  A confirmed diagnosis of Young Onset Parkinson's Disease.  I've spoke of before and always loved the song "Unanswered Prayers" by Garth Brooks.  I believe it's true that some things we pray for aren't answered because they shouldn't be, because there's another plan that suits us better.  I prayed hard for an answer to figure out what was wrong with me, I think there are moments where I would have wished that prayer wasn't answered.  But it was.  I then ended off my year with a pre Christmas hysterectomy and removal of my tubes which PD threw a big curve ball into the post op scenario.  I'll write about that another time. 

You know it's been a year of struggle with health issues when you visit your family physician in December and he says "you poor soul, 2014 just isn't your year is it?"  Thankfully 2015 is just around the corner though and I know it's going to be a great year despite any struggles that I may face!  There were many tears shed this year through all of this discovery, many moments of kicking and screaming and anger, many moments of feeling more alone than I ever have in my entire life.  Thankfully however there were many joyous moments and lessons learned to balance things out a bit.

I found support... in the most unlikeliest of places.  Writing this blog for nobody's purpose other than my own grew into something else.  It connected me to people all over the world who are going through and feel the same type of frustrations and emotions that I do.  Given me an opportunity to learn from and share with those people.  For those of you who read this who have PD I will include some links at the bottom of this post that you might find helpful.  I have found support in friends from days gone by that have now re-entered my life in the most amazing and beautiful way.  Friends that love and support me more than I could have ever dreamed up that lift me up on the days where I want to cry.  I would not have those people in my life the way they are now if it weren't for PD and I am grateful for that.  I have attended support group meetings where admittedly it can sometimes feel like that song from Sesame Street is playing in the background "one of these things is not like the others" as most of them have 25, 35, 45+ years on me.  However despite my anxiety about attending them were very positive experience with useful information,

I have found hope... There are amazing things happening through organizations like the Michael J Fox Foundation and others on the road to new treatments, better treatments and hopefully a cure someday. Pumps that can be attached similar to diabetes pumps to deliver more effective doses of levodopa and increase "on" times etc.  Inhalers to attempt to get it to your brain faster. As well as important steps to finding something to slow progression of the disease.  I have found some things through my Naturopathic Doctor to help me in some of these areas and I have hope that there are more ways by thinking outside the traditional 'pharma box'.

I have found a new vision... I love helping people its my passion and I truly strive to use my abilities to teach my girls to give back.  That there are always others less fortunate and we should help people out when we can and be kind.  I've raised money for various causes, shaved my head for childhood cancer, planned benefits for families struggling etc... These things all warm my heart and make it smile and I truly love doing them.  But I think my path of helping is changing and will look a bit different moving forward.  Through this blog I have connected with others facing this disease and have had the opportunity to share and spread awareness that Parkinson's is not just an old person's disease.  It may look a lot different when you have it younger, in fact when my medication is working and I'm having a good day most people would never even know I had it.  It's hard to "see" sometimes and unless you spend a lot of time with me or see me on an "off" period you couldn't really understand.  I was approached by the Parkinson's society of Canada about my riding lesson's for therapy and they posted an article in their National epost.  I was thrilled to spread the word about the benefits of riding which has helped me tremendously and I hope that it has caught the attention of others with PD to give it a try.  The link to that publication can be found here:  http://parkinsonpost.com/
I was also overwhelmed when an organization that's at the forefront of finding a cure wanted to use a portion of my blog to spread awareness on YOPD.  The Michael J Fox Foundation does amazing work and the response from their article and people it's connected me with has been invaluable.  Oh what I would do to get to sit down and have a coffee with Michael.  His books, his attitude, his determination are all very inspirational.    https://www.michaeljfox.org/foundation/news-detail.php?realizations-ve-had-since-my-young-onset-parkinson-disease-diagnosis 
I may not have gotten to choose whether or not I have PD, and to be honest who in the world would.  However I can choose to try and make something positive come from it.  To try and help others struggling now and in the future.  To do my best to advocate for what is life changing and a lifelong trial.  It helps keep my positivity in check so I get as much from it as others may receive.  The messages I've received from all over have been inspirational to me and I am grateful for those that reach out to share their similar stories.

And I found love...  Unconditional amazing love particularly from my husband.  Who throughout this has been there to comfort me, tell me it'll be ok and that he chose me in sickness and in health.  I'm sure he has his own moments of fear, but he always makes me feel loved and comforted.  That he will always be by my side.  He's also terrible to torment me and make me laugh when my tremor is bad or I'm hunched over before my yellow friends kick in.  Playful digs about a bad situation to make me laugh.  Cause you might as well laugh as cry right?  The song 'You & Me' sums it up perfectly.  I first heard it on Ellen and it was like they were singing it about us!  http://ellentube.com/videos/0-lgywpm4e/  And I found love from my children and worry from them that both makes me feel awful but loved at the same time.  Love from family and friends who come to my rescue when needed.  There is a lot of love and I am full of joy for it.

All and all it has been a year that I'll happily see go away.  However the struggles will not depart as the bells ring this New years, but that's ok.  It'll regardless be a fresh start and I pray a positive outlook moving forward.  I will strive to stay positive, to keep as active as I can like I have been to keep the disease at bay.  I will continue to find the joy among the fear.  I will continue to try and help others and to spread awareness.  I will keep, keeping on because I want to and despite the struggles I am blessed I am lucky and I have Joy in this Journey...



Here are some links for those of you with PD that might interest you:
I had the pleasure of connecting with this lady through emails  She's wonderful check out her blog!  http://magictrickparkinsons.wordpress.com/

Sonia is a family physician that had to give up her practice with YOPD.  Life works in mysterious ways and oddly enough my family doctor and her are friends.  She puts out some great information and is very sweet.  http://www.designingacure.com/

Another I've had the pleasure of connecting with http://www.parkinsonspositive.com/

And this man is the chair of the YOPD support group in the Maritimes.  We had a great chat, he's full of great information and remains positive in his own journey.  www.peterdavison.ca/ParkinsonsVideos.html


Nov 13, 2014

"Life is like riding a bicycle, to keep your balance you must keep moving" ~ Albert Einstein

We all struggle to find the right balance in our lives.  Most people my age associate that phrase with a work/life/kids kind of balance.  I know that would have been my initial thought before.  Now I find myself looking for the right 'balance' in many areas as it relates to Parkinson's.

For myself there's a balance between traditional and perhaps not such conventional therapies.  For instance my horse back riding lessons.  It's now been six months since I started taking lessons and I have to say it has had a tremendous impact on both my physical & emotional health.   Unlike traditional therapies that I also utilize like Physio & Occupational Therapy, Massage and Acupunture riding is for my benefit now and moving forward, preventative therapy.  Where as the other therapies typically serve an immediate need for relief.  A need to improve the function in my right hand, or ease the pain that comes in my shoulders & neck which can often be debilitating.  Those treatments are necessary for multiple reasons however riding is different.  It is helping maintain my balance & leg strength, essential if I'm going to keep wearing those heels!  It works on my posture which is important because with PD one tends to stoop.  The more lessons I take the more I see improvement in my ability to ride, but more importantly the more strength I maintain in muscle groups that don't get worked with other forms of exercise like running or walking.  After these six months I've been able to train my legs to do what it required of them, to keep those muscles strong and although there are still bad days where my abilities are limited when riding it is still an enjoyable experience for me, that's the mental health side.  It's fun even on the frustrating days.  My last two lessons I've started to attempt to canter.  This is an extremely fun step and concept, although it most definitely requires my body to cooperate in different ways than trotting does.  My mind knows what my body needs to do, but my body just isn't quite there.  I have much work to do on keeping my legs in place, not leaning forward and keeping my posture tall & centered and in the saddle and not on the ground!  All of those things can be a struggle for this body of mine.  It can be a bit of an intimidating thing when your body doesn't necessarily want to cooperate the way your mind wants it to.  However, regardless of that the excitement of moving onto that next step of riding gives me the push to want to keep working at it.  I get so much joy out of my weekly ride even on the bad days that I hope I never have to give it up.  I may even be liking riding boots as much as my high heels!  Ha! Ha!

Then there is the balance between pharmaceuticals and the more natural way.  I am not opposed as said before to the pharma way, in fact I cannot imagine my life without Levodopa since being on it these past 5 months.  I certainly wish my 'on' periods would last longer, but none the less I would not want to go back to the way I was before.  Better to have some 'on' times albeit brief than none at all.  So I am grateful for this treatment and for the great movement disorder neurologist & his nurse that handle my care.  They are always there for me to ask questions even in between appointments by email and I am very fortunate for that.  That being said there are so many other issues that go along with PD such as insomnia & pain and I'm just not willing to take yet another drug for every other ailment.  So I really do try and do my research and find alternative treatments to the pharma world for these things.  Besides I have tried some of the pharma routes for those things and they do not work.  I had been told that by my neurologist that if it's PD pain, or PD related insomnia that muscle relaxers, sleeping pills and other such treatments typically don't work.  So in addition to my own research I have a fabulous Naturopathic Doctor (Nara Simmonds).  She works with me to focus on the most important issues I need help with and together we attempt to find things either diet related or supplement related that can help.  Sometimes they do not work, other times they do.  After some failed attempts at natural options such as melatonin for sleep I have been taking Valerian Complex for over 5 weeks now and I am thrilled to say that I have gotten more sleep in the last month than I have in the last two years combined!  It's a very exciting thing to wake up knowing you got 5-7 hours sleep when you were essentially living on between 5-10 hours total a week before, if you were lucky.  Sadly the health coverage world does not cover these things, which sucks because they can be expensive especially when you have a daily cocktail of that, B complex, Magnesium, Vitamin D, C and so on.  The monthly tab can certainly add up.  And there have been many suggested items that I've had to decline taking simply for financial reasons.  However it is one heck of a joyful thing to have finally found something to help me get some much needed sleep!  I had another appointment with her today and she's never one to give up, she had an entire list of plan C, D and so on incase this past one didn't work and I swear she was just as elated as I was when I told her I've been sleeping!  She armed me with a list of some other things that can help increase dopamine production and 'on' periods as well as some other things to prevent neuron death (death of the cells that produce dopamine) and has researched it all to make sure it's all safe to take with my Levodopa.  Of course I won't be able to afford to take everything on the list, but I'm looking forward to trying her top pick on the list next. 

So for myself, there is much to balance.  Natural and pharma, conventional and non traditional therapies and treatments.  There's also the balance of attitudes.  Just like anyone else I have my days, it would be unrealistic not to.  Although I refuse to let PD define me, it has changed my life forever.  With it still comes fear of what is to come, but also comes determination.  I am determined to find the balance in therapies and treatments to maintain my current quality of life for as long as possible.  To continue to explore forms of exercise that work for my body's limitations but still pushes them.  To do everything I possibly can to try and slow progression.  There is much that is out of my control and those are the things that cause fear and sadness and a sense of loss.  All emotions that come to me in waves.  However my attitude on how to accept it is up to me. Yes I have the poor me days, who doesn't?  However when I find myself in that slump for more than a day or two I really try to kick my own self in the ass and give my head a shake.  I am also fortunate enough to have a handful of people who care about me enough to lift me up on those days and I am very grateful for them.  Having a fighting attitude is what will continue to drive me to exploring these new treatments and therapies and find the ones that work for me.  PD looks differently for everyone who has it, particularly young onset patients.  Therefore there is no blanket way to deal with it suitable for everyone.  But I think if you want to fight it, if you want to maintain the best quality of life you can for as long as possible you need to step outside of the box and look at the giant picture of options.  This is why my 'care team' consists of many professionals who are experts in various fields, they all play a role in helping me fight! 

 I fight not only for myself, but for my beautiful girls...for my little family of four!

Nov 6, 2014

When life gives you lemons....

You make lemonade right?  Or that's how the saying goes... But what if you don't like lemonade?  What if you would rather a coffee?  Well I guess the purpose of that statement is to make the best of what life throws at you and many times we experience things that are out of our control.  So we can have a sour puss over it or we can try and add some sweetener to that lemonade and accept it.  Sometimes it's hard to find the sugar bowl though...

This has been kinda one of those weeks for me.  I've been in a bit of a 'funk' I guess you could say.  I think the colder weather and looming winter being around the corner has a bit to do with it.  When you're not working in the summer you can still find joy easily at a beach with some serious bouts of vitamin D.  I took advantage of that this summer a lot where I could sit my butt in a beach chair and the kids could play happily unknown to them if it was a good or a bad day for Mom.  But with the change in temperatures lately I find myself really missing the career woman in me.  In particular missing the daily outing of work and the social aspect that it brings.  When I do get to spend some much needed adult time I often find myself listening to stories of their workplaces.  Naturally so seeing how we spend the better parts of our lives working.  As time goes on and the summer heat is missing I'm finding it more and more difficult to listen to the workplace stories.  A sense of jealousy coming over me for what I'm missing out on.  And even a twinge of annoyance when I hear people justifiably venting or complaining about something that happened at work that week.  I usually hold back the urge to say "don't complain I wish I could work".  I try and rope that thought in knowing they aren't saying or doing anything wrong they're simply sharing.  I guess I've just been finding I have less interesting things to share and I'd be lying if I didn't say it was a downer for me.

So this week in particular I found myself all too willing to stay in my pj's all day long when Samantha would get on the bus to school and quite content to laze around with Izabella for the day.  I even caught myself dosing on the couch after supper while the girls played together in the evening before bedtime.  Now this isn't the end of the world but not a pattern I want to allow myself to fall into often.  I am exhausted all the time, that's just par for the course with Parkinson's.  Something I typically do my best to deal with and keep going.  But I was allowing myself to feel lonely and secluded from the adult world because I had nowhere to go, no place to be and no meeting I was expected to be at.  So the lemonade was getting pretty sour.  I realized the other day that I had to dig through the cupboards and find the honey to sweeten it up and get myself out of the 'funk' before it got worse.  Because I tried that lazing on the couch feeling sorry for myself thing this time last year and it did nothing other than make me get fat and make my mental & physical state worse.  So I need to remind myself of that experience as to not allow it to happen again.

Thankfully today I had a day that I very much needed.  A day for me, to recharge.  To change my attitude back to the way I typically try and live.  Thursday's are my one day of the week I get "off" from my new life of being a stay at home Mom.  I love my girls more than life itself but everyone needs a break and my break used to be going to work.  So now my break is Thursday-me-day.  So after Samantha got on the bus it was the usual routine of getting Izabella and myself ready and out the door to drop her off at the day home they once both went to four days a week while I worked.  It was then off to my weekly riding lesson.  Despite my rut I had started to fall into this week I still got my butt on that treadmill everyday when Izzy went for a nap so my legs were feeling in fairly good shape.  I hadn't really lifted a finger all week other than that, so overall my body was quite cooperative from all the rest.  In fact times like that are when your mind can 'almost' play a trick on you into thinking that maybe you're ok.  Unless it's first thing in the morning when you wake up stiff and barely able to get moving feeling like you have a 95 year old body, stooped over like the hunchback of Notre Dame, until you get your meds into you, then you know.  But other times your mind will play those tricks, until you try and do something fine motor related particularly outside of my 2 hours of 'on' times from my Levodopa.  Thankfully after having a great chat with another young onset patient and some other online communication I have found I'm not alone in this feeling of your mind playing tricks on you now and then.  But that's a topic for another post.  So off to the barn.  My legs seemed to be in pretty good shape.  Did the usual walking and trotting on TBone, some two point.  An exercise where I essentially stand up out of the saddle leaning forward but with a straight back, heels down and remain in this position while he continues to trot.  I've found this particularly beneficial for my balance and it really works a pile of leg muscles while doing it.  Afterall I have to keep that balance part in check if I want to keep wearing my high heels!  But the exciting part of today, just one little thing that I think took me right out of that "funk" was doing something new.  I had my first attempt since starting riding for therapeutic purpose at a canter!  Super exciting.  My legs definitely have some work to do to keep him going that fast and a new set of muscles need to be used more efficiently but it was a new step for me in this therapy and even though it didn't last long I thoroughly enjoyed my attempt at it.  It was exhilarating and just what I needed!

So after that exciting start to the day the rest of it could only go up!  I then got to get some womanly pampering and had my nails done, then home for an extremely LONG hot shower with no children interrupting or asking to get in the tub or screaming or fighting in the background.  I almost didn't want to get out at all!  And then as afternoon hit I knew there was a PD support group happening in Charlottetown, I had been invited plenty but never made it to one yet.  I did attend one in Montague a couple weeks ago and although I was skeptical it was a small group with a good topic and I didn't find myself nearly as uncomfortable as I thought I would.  But I would be lying if I didn't admit that seeing older people with Parkinson's freaks me the hell out!  I guess I'm in the stage of acceptance of myself and where I am with my PD but I'm not necessarily at the point of accepting where I "might" be down the road.  So when I see someone that's much farther advanced in the disease with very clear impairments in both motor, speech and otherwise it can be a bit scary.  I don't like that I feel that way, after all these are people too.  I don't like the fact that I find myself focused on limbs of individuals almost scoping out how well their body parts are working, what impairments I can notice on perhaps the less severe cases because I know they have it so I'm watching for it.  I'm not proud to say that I do that, but it seems to just be natural to me at this point.  I guess my mind is wanting to prepare myself for changes.  But like I said I don't like that I find myself focusing on those things as opposed to the person in front of me and getting to know who they are.  I guess this is a process and I'll move along on it as I have other ones with time.  So despite those thoughts I went to the meeting this afternoon.  It was as well a small group, smaller than I anticipated but as all of the PD community has been on the Island since I went public with my diagnosis they were very welcoming and kind.  I was made feel comfortable and despite the things that freak me out a bit about those meetings it was a positive experience and I do feel I will continue to take part in such groups.

I then decided that I started my day on a high note after a rather low week and I should end my day the same.  So I picked the girls up and we went on a date out for supper together.  The girls enjoyed pizza and of course ice cream at Boston Pizza and I enjoyed hearing the many stories of Sammy's day at school and all the trials of a 6 year old!  And of course the many hugs and kisses and stories of the bump she got on her head from Izzy!  Oddly enough I forgot to take my meds that I typically take around 5 or 5:30 as we were entering the restaurant and my extremely perceptive 6 year old quickly noticed by the time our meal came, pointing out that Momma's hand was starting to shake bad.  I told her I knew and that was ok, I'd get my medicine when we got back out to the car.  She then promptly told me that she told her friend Lexi on the school bus that her Mom has shaky hands a lot.  She then proceeded to say "I told her you had Parkinson's, but the day I told her I couldn't remember the name right and I told her it was something that starts with Park and makes you shake!"  There's no hiding anything from this smart girl of mine.  But I'm thankful that she now has a better understanding of things than she did before and she doesn't seem sad or upset over the days Momma might shake more or just be having a bad day. 
I guess it's true that children sure can adapt well.  If only us adults could adapt so quickly....

Restaurant selfie of the Momma & her two cuties!

Oct 27, 2014

"A friend is someone who lets you have total freedom to be yourself" Jim Morrison

I am blessed to have many people in my life who love & support me.  People who not only give me that freedom to, but want me to be myself!  People who are genuine, kind and love me.  The reality is that we only have one life to live and we should not do it on someone else's terms.  Having Parkinson's has changed who I am in some ways but I think it's mainly reinforced my true self.  Everyone deals with life's obstacles differently and there is no wrong way as long as you are being yourself.  If someone expects you to be someone that you are not, then one has to ask why?  No matter what answers you may come up with at the end of the day they are not true and supportive friends to you.  Because a real friend loves & supports you just the way you are without expectations for you to change. 

The world is blessed with so many personalities and thank God for that, because if we were all the same things would get pretty boring.  There are outgoing people, introverts, those that are often comic relief, the quiet ones that take it all in.  Some people are private and others not so much.  But no matter what every person is unique in their own way and that's what makes them beautiful.  I believe that we should all be allowed to shine in whatever way we are most comfortable and we all have something to offer the world but we can only do so if we are being true to our own self.  I choose to live my life very openly.  I have always been an open book, some people really seem to hate that, which is fine by me because it's not up to them how I live my life. 

We could all learn something from Dr. Seuss, I personally think he's very wise! 

The reality is that if people don't like or appreciate the way you are, it doesn't matter.  If they choose to pick apart or judge others constantly then they must be unhappy with their own lives.  It's nothing that you should even waste a single thought on.  Because people who are kind and genuine and happy in their own skin do not gossip or criticize the way others live their life.  They appreciate everyone's place in this world and they ignore things they may not like rather than tear those things apart.  If you are experiencing a struggle in life of any kind I assure you, it will be a wake up call for the type of person you want to be and the types of people you want to surround yourself with.  Parkinson's has taught me to live in the moment and to surround myself with positive people who are not mean or cruel to others just because they may not be the same personality or opinions.  It has taught me that sometimes people are simply unkind and that is ok because it's their issue to deal with not yours.  It's taught me that most people are loving, caring beautiful people in this world who truly want to live a life of positivity regardless of what is thrown their way.  I am ever so grateful for these lessons and sometimes simple reminders.  I am also very grateful for the beautiful people it has brought back into my life and the new people who I've crossed paths with because of it.  I am grateful for a husband who knows I am an open book, supports that and is happy I'm that personality.  He loves that I am who I am and I am lucky to have him!

I think we all have a purpose in this life and sometimes it goes in an entirely different direction than where we thought it was suppose to.  I genuinely love others and love to help out when someone is in need.  I've taken some flack for that over the years, some judgement on my motives for helping others and even some negative feedback about my blog.  But at the end of the day I know my own truth and I know that I am sincere and I care and I truly want to help others whenever I can because I think that's the way the world should work.  I think it is part of my purpose for being here and it's a way of life I want my children to grow up knowing.

Now that I am dealing with PD I do not think that has changed, however I do think it looks a little different.  I can't often help in a physical way like I might always want to but I can still help others.  Parkinson's is a BIG deal.  It's not getting the flu, or breaking a leg or something that will go away with time.  It is a degenerative disease that will be a life long battle for not only myself but for my family to deal with.  And well, it sucks.  It's scary and it sucks.  BUT I am a firm believer that everything happens for a reason.  And if having YOPD is the card I have been dealt with than it must be for a reason.  I am suppose to do something with this.  When I first started reading up on PD there is very little information out there for the young onset patients.  It is primarily an older person's disease and therefore the majority of information, supports and so on are targeted to that demographic.  I started to write this blog for my own form of therapy as it helped get things off my chest in a positive manner.  When I started to share it which was months later it in turn connected me with other young onset patients, which was fantastic!  I was able to communicate with other people with similar struggles in similar times in their lives and that can be very beneficial.  I also received a tremendous outpouring of support and let me tell you that is a huge weight lifting feeling from this journey.  I was touched by many who said that my writing helped them in their own struggles, some PD related others not and that has been heartwarming.  I was contacted by various organizations on how I might be able to assist other people struggling with Young Onset PD and that was mind blowing to me and incredible at the same time.  How could I help them?  I don't yet know the answer to that.  However one thing I know for sure is that I have this scary degenerative disease for a reason and as time goes on those reasons I think are presenting themselves to me.  I think part of the reason may be that this is to be the new way I can try and help others.  And if one person feels like they are not alone in this journey because of it then it has served it's purpose.  If one other person with Parkinson's that's struggling to maintain their balance reads about equine therapy from this blog and tries it and has success with it, then it has served it's purpose.  If it makes one other young parent with PD feel like their are not alone and that someone else knows what they are going through than it has served it's purpose.

One thing is for certain.  I am an open book, I always have been and I always will be.  I will not change who I am for anyone and I will not let PD change me either.  I will continue to pour out my heart and soul for nobody's purpose other than my own and if it helps someone along the way I think that's fantastic.  And if it doesn't or someone doesn't like it than that's ok too.  Nobody has a gun to their head telling them they have to continue to read it!  Because I write this blog for three reasons:
 
1.  To continue to get things off my chest in a constructive manner
2.  To avoid assumptions by others about my own health, because I am telling it like it is
3.  To perhaps touch or help one other person out there that may be having a similar struggle
(If there were a fourth, it would be to provide the folks that love to gossip something new to talk about!  Ha! Ha!  Your welcome!)

Thankfully because of this blog I have had many positive people become closer friends.  Many people be more true and honest with me about themselves.  Learned more about myself and most importantly I have been touched by the lives of others who are fighting various battles.  One which must be mentioned is Cindy, who as I wrote about previously I had the great pleasure to meet when I was in Calgary.  She is an inspiring, beautiful, courageous woman fighting breast cancer with dignity and strength.  She inspires me to fight harder, to stay positive and to cherish the loved ones in my life.  If you are ever in need of feeling any of those emotions I urge you to read her blog.  It can be found here:  http://warriorcindo.blogspot.ca/





















She is amazing!  I am lucky to have met her and she's more beautiful and more wonderful in person!


My goal in this life is to be a good wife, a loving mother, a kind hearted person that always tries to put others first and help where I am able and most importantly to be ME.  All of those things are what make me happy and when I stop being any one of those things I cannot feel fulfilled in this life because I am not being the person I set out to be and therefore I will live a very unhappy life.  Having Parkinson's Disease changes a lot of things but it does not change any of those things that are important to me as I go through this life, my life.  I urge you that if for any reason you are not being real, not being true to yourself or constantly worrying about what other people think, stop!  Don't let anyone, anything, any disease, any challenge or obstacle this life may throw at you take away who you are or what you believe in.  Because nobody else can love you if you cannot love yourself first. 



"Unless someone like you cares a whole awful lot, nothings going to get better, it's not!" 
 
"Why fit in when you were born to stand out?"
 
"Today you are you, that's truer than true. 
There is no one alive who is youer than you!"
 
"You have brains in your head and feet in your shoes,
you can steer yourself in any direction you choose"

~Dr. Seuss~
















Oct 19, 2014

'Screw you Parkinson's' cause I just ran my first 5K race!!!

Today was 16 months from when I got sick (although in hindsight years since my first PD symptoms began), 6 months since I first heard the scary words 'Parkinson's Disease', 5 months since I started PD treatment and 1 month to the day from when I was officially diagnosed with Young Onset Parkinson's Disease.... AND...  I just ran my first 5 km race in the PEI Marathon this morning!!!  Not only did I run a 5K but I did it in 36:55 which was 7:05 faster than my goal!  I did it while wearing a custom made shirt by the amazing people at COWS Inc. where I was working before I got sick that said my motto "Screw You Parkinson's"!
 
I can honestly say that aside from my kids being born this was my next greatest accomplishment!  That might sound like I'm making too big of a deal out of it not like I ran a marathon or even a half, but for me, for this body of mine, for the struggles I deal with daily this was HUGE.  I am beyond proud of myself for it.  It was the hardest thing I've ever done and it was by no means easy, but I did it & it was incredible! 
 
I had 3 amazing women run with me today, all of which have been or currently are runners and likely could have done this easier and faster but chose to stick by my side and encourage me to keep going when I thought I was done.  Words would never be able to express just how grateful I am for that, how much it helped me and what it meant to me.  One of my best friends Lorena has been and is by far one of my biggest supporters in more ways than one and one of my biggest cheerleaders too.  She encouraged me to register for this race and had complete faith and confidence in my ability to pull it off even when I doubted myself.  She is amazing and I am so lucky to have her in my life!
 

 She even made sure she had the same shirt made for today to run by my side!
 
There were also two other ladies, Aliceann & Dawn who are dear friends to her and before today acquaintances of mine who chose to run with us.  They did not have to, but they did, wanted to and I am in awe that they were there for me.  This journey of mine keeps giving me so many unexpected surprises and beautiful gifts like this one, gifts I would have never had the pleasure of receiving if it weren't for Parkinson's.  So despite the struggles there are many wonderful things presenting in my life because of it and one has to feel a sense of gratitude for them even if it means I have PD.  In a strange way I'm thankful for it because it's blessed me in many ways already.
 

So grateful for these 3 ladies!
 
 
Today's experience was extremely emotional for me aside from how physically challenging it was.  I was a basket of nerves every time I thought of it this week.  Not because I didn't think I'd finish, I knew I would finish even if it meant walking the entire 5K.  But scary because I didn't know how my body would respond.  After all the 2.5k mark is usually where my body starts to give in.  3.2K was the farthest I'd ever run (at the Parkinson's SuperWalk).  So getting to the 5 kilometer mark was terrifying to me.  I had countless messages leading up to this morning by text, facebook posts, emails from so many people with words of encouragement and support.  Beautiful things said that made me feel special and in awe that so many people had so much confidence in me when I didn't necessarily have it myself.  To all of you that took the time to tell me those things, please know you were a HUGE part of today.  I held onto those words and used them to keep going.  I am so grateful for all the caring cheerleaders I have both near and far and it truly does mean the world to me.   When I woke this morning I felt nervous but was thankful as I had gotten some sleep last night which doesn't always happen.  I was stiff and shaky which I am always worse first thing in the morning until my meds kick in.  I held off as long as I possibly could before taking them because I knew if I didn't they would be wearing off by the time I was due to run, or half way through.  Once it was getting close to 8am I took it knowing my first dose usually takes the longest to work (45 minutes to an hour average).  When I met up with the girls and we got to where the Marathon was starting I thought I was going to puke!  But then about 10 minutes before the start they kicked in and my body started to feel a bit better and the shaking eased.  I suddenly looked around to literally hundreds and hundreds of people with different colored bibs ready to run.  5K, 10K & half marathoners (those people amaze me).  The full marathon runners started at a different location.  Well seeing the crowd was just like everyone said, exhilarating!  So when the time came I was pumped and ready to go!
 
The first couple km's went well.  I tried to do my usual run a km and then walk a minute as I know my body can't do the full amount running.  After the first km I realized I had done it faster than I typically do, no doubt from the excitement of all the runners around me.  But it also worried me a bit that I started too fast.  But I kept on, the girls stopping to walk when I did telling me I was doing great and encouraging me.  By the time I hit 3.5K I was most definitely running out of steam.  I had already gone farther running than I had ever done before and the thought of another 1.5K was terrifying to me.  When 4 hit I had both a sense of excitement that I was almost done but fear because I was now shaking like a mad woman and was struggling.  The girls were wonderful, that last K I had to stop several times for a little walk or I knew I wasn't going to make it.  They kept encouraging me telling me we were ahead of schedule that I was doing great and their words were heartwarming for me and gave me the push I needed.  When we finally hit the corner of University Avenue and took the turn, you could see all the spectators, hear the cheering AND most importantly see the finish line.  Tears started to stream down my face as Lorena said "See it, it's right there".  Then they all said to me "Don't cry yet!!!".  So I shook my head wiped the tears and made myself stop.  Coming into the finish line was a bit of a blurr, I remember looking for Aaron & the girls but at the same time not really seeing anything.  I did catch them right near the finish and apparently there were some other supporters there I didn't even notice.  As I crossed the finish line they put the medal around my neck and I bent over exhausted and excited and in awe all at once.  I did it!  'Screw You Parkinson's, cause I just did it!!!'

 A sea of runners!
Incredible thing to be a part of!
I then was greeted with congratulations by my girls and their signs with kisses from them and my amazing husband who sticks with me no matter what and hugs from my biggest cheerleader since I can remember, my sister!  As well as my friend Donelda & Lorena's parents & kids.  Another huge cheerleader of mine Angie & her sweet girl Abigail where there with a big sign for me too, but in the excitement I didn't see them.  But the whole experience, well, It was Incredible!  Holy crap I just ran 5K in what I knew was faster than my 44 minute goal but still had to wait for the official time and I did it despite my screwed up body!!!  Wooohooooo!!!
 
 

 
 





















As we ventured off into the tent where there were some snacks to refuel, I tried to grab a piece of banana.  Shaking so badly I couldn't unpeel it, so Lorena did it for me.  Then when I went to grab it I couldn't and had to use my left hand.  The poor volunteer behind the table looked at me very concerned and said "Are you ok dear, do you need to sit?" to which I didn't even have time to answer cause Lorena promptly said to her "She's fine, read her shirt"  Ha! Ha!  Took the lady a second and I think another volunteer actually said into her ear 'she has Parkinsons'.  It made me laugh, particularly at Lorena's quick response and pride in what I'd just done!  Another volunteer spotted the tattoo's on my back, the portraits of my girls when they were each 6 months old, took a picture of them and one of my shirt!  It was awesome!  Then the results came in..... Oh the anticipation.... Lorena and I went to the wall to search for our numbers and there was my name.... Natasha McCarthy #4081, Mount Albion..... 36:55!!!  WOW... Lorena gave me a giant and loud high five, then hugged me and said "didn't I tell you, you could do it?" and then I cried, again....
 
So very exciting!  It was by far one of the best days I've ever had.  Not one of the easiest but one of the most rewarding experiences I've ever done.  I am so grateful now that when January of 2014 hit I forced myself to stop feeling sorry for myself and lazing around scared about what was wrong with me and got off my ass and started moving again.  That I was determined to lose that 25 pounds I gained and keep my legs from getting as bad as my upper body, particularly right arm had become.  Since then I have been determined to not get worse.  Since first hearing those words Parkinson's I decided I would do what I needed to do to fight this.  And that's what I've been doing.  I've had to give up a lot of things in order to stay active and continue to be the best Mom I can be to my girls, but it's helping me not get worse.  Since I was officially told I had PD I have vowed that since regular exercise is the ONLY thing in my control to try and slow progression of this disease since there are no treatments yet for it that this is what I have to and will do.  I will not let it get me without a fight and I will not give up.  I will stay strong as long as I possibly can and do what I need to do to slow it from getting worse.  And because of so many supporters and encouragement from friends & family I am able to do this....
 
Today was AWESOME!
"Screw you Parkinson's, cause I just ran my FIRST 5K"!!!
 
 
 
 

Oct 12, 2014

'Accept your past without regrets, handle your present with confidence & face your future without fear'

Today I turn 37 years old!  It's funny how when we are in our teens and even in our young twenties we think late 30's and 40's are so dreadfully old!  Then when we hit that place ourselves we feel a whole lot differently.  We have assumptions about where in our life we will be at a certain age and what we'll be like.  We have a vision for what life is to look like at certain stages.  When we hit that point in time in our life and it doesn't appear the way we had envisioned we look at ourselves and wonder why?  Is it different for good reasons or perhaps frustrating ones?  Is it better than we hoped for or worse?  Well I can say that like most I had a thought of where I'd be around this time in my life and it certainly was not to be a 37 year old mother of two beautiful girls and dealing with Parkinson's Disease.  That's an 'old person' disease and I am not old.  Although I have to admit I have days where I feel like I'm 37 and I'm trapped in the body of a 90 year old.  Those days are frustrating to say the least.

I saw my family Doctor a couple weeks ago.  We were speaking about my now confirmed YOPD diagnosis and how my 'on' periods with my meds aren't lasting long enough for me to go back to my career.  I admitted to him that I was struggling with that, mourning that PD has taken so much from me and how I was meant to work.  I adore and love my children beyond what words could express but I had never envisioned being a stay at home mother.  And I have days when the school bus pulls up and the fighting starts and I want to pull my hair out.  Days where my husband will Facetime us from his work in Alberta where I'm ready to scream.  I think perhaps had I 'chosen' to be a stay at home Mom it would be a lot different, but this was forced on me.  I enjoy my time with them immensely and I know how terrible that must sound to some.  But it just wasn't the way I 'planned' it all out.  I'm suppose to be 37, thriving in my career that I've worked so hard for over the years, loving being a dance mom and my 3 day weekends with my girls (I worked 4 days a week) and life was pretty much suppose to be perfect.  Parkinson's is not part of the perfect plan.

But with all that said, things could always be worse.  I have been touched by so many beautiful people struggling far more than I am.  This journey has brought people into my life that are fighting courageous battles that I admire their strength.  A beautiful woman named Cindy that has crossed my path through the world of technology & blogs.  Virtually introduced to me by her cousin who lives in PEI.  She's a warrior Mom fighting breast cancer a year younger than I with small children as well.  I read her story and sometimes feel guilty of the down days I have.  After all I'm not having to endure any of the horrible obstacles she's faced with, life altering decisions and fear.  I have fear of my own and obstacles too but they are of a different variety.  So many out there fighting battles that they are losing and know that their time on this earth is being cut short.  Parkinson's was not part of the perfect plan, but I know I can do this, I know it's not what I want, but I know it could always be worse.  I may have struggles and bad days and yes over time I will get worse.  BUT I will be there for all the momentous occasions in my children's lives.  There to hold hands with my husband.  I am lucky!  I am blessed and I have much much joy in my life to be grateful for.  Parkinson's disease will not take that away from me because I won't allow it.  Parkinson's will not define who I am.  Parkinson's has and will continue to teach me lesson after lesson in this life.  Wonderful lessons that otherwise I may not have gotten to learn.  I am lucky in many ways.

So, as I celebrate my 37th birthday it isn't how I planned it all but that's ok.  I am lucky enough to be spending my birthday in Calgary with my best friend Colette who I love dearly and is one of my biggest supporters and I can't imagine life without her & her beautiful family, even though we live a country apart.  I woke up this morning to the beautiful mountain scenery of Bow Valley Provincial Park where we're camping & been enjoying morning coffee & evening wine.  Next week I am going to have the utmost pleasure of meeting that inspiring woman Cindy that I spoke of above and I cannot wait to hug her.  I feel as though she's been a friend forever and I've never even laid eyes on her.  I will spend most of next week making beautiful memories with my sweet girls, my husband will be meeting us here to come home with us for a couple of weeks and all around it's a fabulous way to become 37!  There is much joy to be had as I start my 37th year of life even though I'm in a place I never would have planned for!
How can you not find joy when this is where you wake up on your birthday?


 

Sep 24, 2014

"In fact, Parkinson's has made me a better person, a better husband, father & overall human being" Michael J Fox

Well now, how about that for a statement?  I wonder when I read that where in his process he came to this realization.  I have read his books, it was almost eerie reading the first one 'Lucky Man'.  Some of the first signs he spoke of were things that I had experienced that I didn't always know how to put it into words.  It was as if he was describing it for me.  I often think of his denial of his diagnosis for so long, his constant search for another opinion to dismiss it.  I am thankful I did not go down that road but I can see how easy it would be.  I do believe that this diagnosis for me has it's purpose which is yet to be determined but I wonder when I hear that quote at what point in my life might I hit a stage where I would whole heartedly believe in such a statement? 

It hasn't even been a full week of trying to process things and I'm sure there's a long road ahead yet, but I think overall I'm accepting it fairly well.  After all it wasn't a huge surprise to me and I had months to get used to the idea.  However, that being said I must admit that I am finding it ALOT different to say the words "I have Parkinson's Disease" as opposed to saying I'm being treated for PD.  Not much of a change in that phrase although the two seem to be worlds apart at the same time.  I think however the most difficult part of processing all this is the realization that although I do have hopefully some control over not getting worse too fast I have no control over getting any better.  I had held onto hope that despite that appointment likely leading to this being official that there would be an alternate course of treatment that would further improve upon my ability to complete fine motor related tasks and settle the tremors for more than a 2 hour period.  I am so much better than I was before starting on Levodopa the end of May.  I'm extremely grateful for the fact that I can indeed time doing exercise around my dose kicking in, or time using a pair of scissors or doing a little craft or whatever have you with my kids.  Afterall 4 months ago those things were almost impossible all of the time.  Now I at least have a window of opportunity and I have joy in those windows albeit brief.  However, finding out that I should indeed find joy in those approximate 2 hour periods and continue to do my best to time things appropriately and manage the "off times" as best as possible for an indefinite amount of time was a blow.  I was expecting (although in the back of my mind always hoping otherwise) my PD diagnosis, I was not at all expecting that I would remain in a standstill.  That thought had honestly never crossed my mind.  Of course I had read in my countless hours of research about how often young onset patients will choose to delay any form of treatment at all, in order to ensure it will be effective down the road when it will be much more necessary.  Clearly I was not at liberty to do that, however being told I should not change medications around or increase anything as it could alter it's effectiveness later when things do get worse.  Sadly that is the reality, I can exercise as best my body will allow and hopefully maintain where I am for as long as possible or at least not get worse faster than need be; but it will get worse.  So accepting the fact that bad days aside where I'm often useless that even on good days I will be most likely unable to work.  That my ability to perform many tasks most people take for granted is approximately 6 hours a day, broken into three parts.  Sometime in the vicinity of 8am-10am, 1230-2:30 & again from 5:30-7:30 give or take.  On a really good day I may get more than that, but that would be the average on a 'normal' day.  Don't get me wrong, I did not have those 6 hours before and I am very grateful for them.  But I am also extremely angry that it's the best it's going to be.  How can I expect any employer even the best one to work around those hours.  Essentially able to work 4 hours a day with a 2-3 hour break in between?  So the thoughts of returning to my career without any advances in research/treatment options seems an unattainable goal at the moment and I am angry about that. 

THAT was the one thing I was still holding onto hope for.  After all I left PEI at 17 years old to get an education and build a career.  One I think I was very successful at for a young age, one I was very proud of and enjoyed.  Not to mention the fact that I love being a Mom but having a husband that works on the opposite end of the country meant that going to work was not only often my only social interaction but my only break as well.  Not being able to work is depressing to me and has been for quite some time now.  Knowing I likely may not be able to go back to work at all (or at least in the foreseeable future) feels oddly like a loss in identity.  I understand I have bigger fish to fry right now, being a good mother to my girls and taking care of myself so I can continue to be that for many many years is much more important, but that doesn't necessarily make the loss any easier.  It doesn't ease the sense that I am yet again mourning another loss that PD has taken from me.  But, the reality of it is I need to change my way of thinking.  Because who knows what the future holds as far as options.  One strange realization in the last week for our family has been to change our pre programed way of thinking of the future to focusing on the present.  We spend a lot of time planning out our futures and what we'll do next year, or when our kids are older, or when our children leave the home or when we retire.  Suddenly those thoughts aren't dream worthy anymore in fact they can be down right scary.  So whether it be about work, or whatever have you the mindset must change to simply being joyful and grateful for what blessings we have today and not thinking too far ahead. 

On a side note I must take a moment to say thank you to the countless messages I've received.  Messages that were so very heartfelt and loving and full of beautiful words of encouragement.  In the moments of negativity they truly do come to mind and give me strength and lift me up.  It's incredible what a simple cluster of words can do for a person during a struggle.  I've also been asked a lot of questions in the past week and I do not mind being asked at all.  One piece of advice I'd like to give is to never assume anything about anyone's situation whether it be health related or otherwise.  If you think you know, trust me you don't.  If you read one article about an illness or disease do not assume you know what you're talking about.  Because it's guaranteed that whether it's someone suffering with PD, diabetes, cancer, chronic pain from an injury, or countless other conditions they or the caregivers of those have done countless hours of research and even they are likely not yet an expert.  So although you may be well meaning, don't act like you understand or know what is out there.  Don't get me wrong, educating yourself on such conditions is appreciated by those affected it's a simple process of asking a question instead of coming across like you know what they are going through.  Changing the way you say something can be a big difference.  Ask questions, it makes people feel as though you are engaged, that you truly care and are there as a support system for them.  Saying nothing because one is uncomfortable happens, but acknowledging things can make a big difference for the person going through it, or at least in my experience.   To everyone who wants to ask me a question, go for it... But I warn you don't ask if you don't really want the answer!  Because for anyone that knows me well, knows that I'm not one to sugar coat things I'm a say it like it is kinda gal! ;-)

One question I've been asked a lot is what is the difference between Parkinson's Disease and Young Onset Parkinson's?  Well, actually nothing.  It's still Parkinson's regardless.  Parkinson's disease in simple terms is a degenerative neurological condition where the cells of the brain that produce dopamine die.  It is unknown why this happens but the loss of dopamine is what causes the symptoms of PD and as of yet there is no cure.  Some of the early signs are tremor or shaking, small handwriting, loss of or decrease in sense of smell, trouble sleeping, trouble moving or walking, constipation, masked face (loss of expression), dizziness or fainting, stooping or hunching over.  I have 9 out of 10 of these early symptoms.  There are MANY others as well such as loss of arm swing, muscle rigidity and stiffness etc... which I've experienced, some of which I have had for nearly 10 years.  I am at a point where on a reasonably normal day for me I can still 'hide' my symptoms.  For example if I tense up my muscles I can often force the tremor to stop, although I pay for it later so it's usually not worth it.  As for Young versus not, it simply means diagnosed young.  That is all.  Parkinson's is typically a disease seen in people over 60 and often more noticeable in those people as they may have other health concerns already that make the symptoms worse; where as a younger person to get it is often more physically active and has no other previous health issues and therefore it doesn't appear as severe.  Only about 10% of PD diagnoses are under the age of 50.  I would be this unlucky rare 10%.  I always did need to be unique, go figure!

I've also been asked if I'm scared.  Well of course I am, but like I said earlier I need to change my mindset and think of the joy in the present and not think to far ahead.  That will help alleviate constant feelings of fear.  I've been asked how I'm coping and how I am mentally with all of this.  Well I think I've pretty much summed that up above.  I've never been a secretive person, always been an open book kind of individual.  I don't think there's anything wrong with either type of personality this is just mine.  I don't feel the need to hide or alter the truth and that is part of why I started writing this blog.  This way there is no need for rumors and assumptions because I am simply telling it the way it is.  I have good days and bad days.  I have days where some simple things that should be easy enough for a child to do will make me cry with fear and frustration.  I have days where I'm extra stubborn in compared to usual where my only attitude is 'I'm fine, screw you Parkinsons'.  I have days where I feel like a bag of crap and I'm angry and miserable because of it.  But more importantly I have a lot of days where I think my attitude is upbeat and I feel determined and strong enough to face the challenges and I find the joy in the little things.  Thankfully I think I am in that joyous space in my head more often than the others.  And on the days that I am not in that space I am grateful for those people around me that lift me up, encourage me and give me the push and the strength I need to get over it.  Some of those individuals have unexpectedly come into my life since this journey began, some are old friends I've had forever, some are new friends made recently, some are the people I would have always expected to be there for me as I would them and some that I did expect haven't been.  But regardless it is all part of the journey, all part of the process, all part of finding my new way in my life that had a very unexpected curve ball thrown into it.

And through all this sometimes sad but often joyous roller coaster ride I hope that a day will come where I can say that Parkinson's has infact made me a better person, a better wife, a better mother and a better human being.  Until that day I will just keep swimming!



Sep 19, 2014

The verdict is in... But with knowledge comes power

Well nearly 15 months after this fun little journey of mine started just 3 weeks shy of my 37th birthday it is official.  I am the mother of 6 year old Samantha & nearly 3 year old Izabella, wife of a wonderful husband Aaron who works on the opposite end of the country from us and I have Young Onset Parkinson's Disease.

Holy crap... How did I get to this place?  Well it took 6 visits to my family Doctor, 2 ER trips, 1 ENT appointment, 2 Osteopath appointments, 3 appointments with the Naturopathic Doctor, 2 Bowen treatments, a battery or lab tests, 1 nerve conduction test, 1 emergency cat scan, 2 MRI's, 2 failed Island Neurologist appointments, more massages than I can count, 16 sessions of physiotherapy & three 700km trips to Saint John, NB (one to a regular neurologist & two to the movement disorder neurologist).  Add to that a two page list of symptoms that have slowly been added to the initial ones, a lot of frustration, quite a bit of anger, a tremendous amount of fear and a whole lot of tears.  And after all of that, here I am.  Holy crap I have Parkinson's Disease!

As I sat in the waiting room today in Saint John it was the first time I waited for an important appointment that I didn't feel like I was going to throw up.  I knew in my heart what was going to happen.  I have spent literally so many hours it would be up to weeks of time reading, it all fit, the medication although it wears off after 2 hours worked.  Today wasn't going to be a big surprise.  I know what's going to happen even though it sucks, I know. 
And then..... I watched the woman before me come out of his office.  She only looked to be about 45, small and appeared to have taken care of herself over the years.  As she turned towards me I lost sight of her and all I could see was... her cane...  Yup it was like it was glowing in neon and suddenly she was lost and that's all I saw.  My stomach all of a sudden felt queasy and my mind started to race with questions.  Does she have PD or a different movement disorder?  How old was she when she got it?  How long before she needed a cane?  Am I going to need a cane?  When will that happen to me?  Oh dear... I shook my head to free the random crazy thoughts, swallowed hard and stopped myself from being ridiculous, you don't even know that woman or her circumstances... You know how you hate when people make assumptions about your health so don't do it to this woman.  My stern speech to myself seemed to work.  Then it was my turn in the hot seat... He brought me to his office and we discussed what his Parkinson's nurse had discussed with me over the phone a few weeks ago.  What benefits I'm getting from the Levodopa, how long it works, how long it takes to kick in the first of the day versus other doses and so on.  He checked my rigidity on my hands, looked at my tremor asked a few more questions.  Said he noticed an improvement from the last visit and looked at the clock realizing my meds likely just kicked in.  Then the moment I was waiting for, anxious for and dreaded all at once. 

"Well Natasha, there is without a doubt that you definitely do have Young Onset Parkinson's Disease.  There is no disputing it at this point."  I sigh, not sure if it was relief or not but I think so?  He then went on to tell me about my off periods and how although it's only lasting two hours it's important that I continue to time exercise and hand writing and any of those things I usually cannot do around my meds working and do my best to deal with the "off" periods as they are called with PD.  That given my age and the fact that this is a degenerative disease (yes, that's a scary shit word.  Degenerative... It WILL get worse as time goes on) and that I will most likely be on these types of medication for the rest of my life or better part of it that it's too soon to try and increase or add another med.  The side effects such as Dyskinesia are too real combined with it possibly not working anymore down the road from prolonged use and it's important I prolong any additional medication as long as I can.  He asked if I was still exercising, I told him yes, that I'm still trying my best to run, still horseback riding on the days I can.  His response "Good, keep doing it as much as you can.  If you need to give up other things in order to keep working out do it.  It is your only way of trying to slow the progression of Parkinson's Disease."  You see, some neurological diseases such as MS that are degenerative as well have medications that can slow the progression of the disease.  As of yet, there is no such treatment for PD.  He advised me that recently there have been studies to show that with regular exercise the brain sometimes has the ability to create more dopamine (this is the chemical your brain no longer creates that causes PD).  So for more reasons than one it is important to keep that up as much as I am able to do.  There were some more talks but the long and short of it were to call if my "off" periods start to get worse or unmanageable and then they'll look at another option but hopefully I can manage as is.  I am to see him again in 6 months time.

So, there it is.  I made one phone call only this time.  To my husband.  He didn't answer.  I left him a voice mail that said "well, you are officially married to a woman that has Parkinson's Disease.  But it's ok, at least I finally know."  Gulp.  He called back of course a few minutes later in his worried tone but loving voice none the same.  Asked if I was ok said to drive safely.  The rest of the folks that needed to know or those that were sweet enough to send me texts and messages wishing me luck received a copy and paste of the same text with the just of what happened.  To all of you that did, thank you it truly does make you feel like you're loved and cared about and not alone.  I appreciate every one of them.  Especially the ones I get at random times not just the day of a big appointment to simply check in to see if I'm ok & how I'm feeling.  Because those are the ones that you know really care.

I did not cry this time.  There was a well up in my eyes for a brief moment but it didn't last, because the feeling of relief of not being in limbo anymore and knowing I now have the power to gain more knowledge and research my options now.  Something I was powerless to do before today.  That is, I did not cry until I was parked to gas up and got a message from my friend Jeannie that as always said the perfect thing I needed to hear in the moment.  One part of which said 'Quote of the day "Hope is faith holding out its hand in the dark" '.  Among some other sweet words that made the tears flow.  I'm lucky to have people like her in my life and have been blessed to have her and others put in my path along this journey to help lift me up and I am very grateful for all of those people.  You help make this all easier.

As I continued home I admit I had a couple of 'moments'.  I had the Why me? for a bit.  After all I think I'm pretty nice, I try my best to be a good friend to those near me.  I don't steal or cheat or lie, in fact often I'm too honest which can get me into trouble.  I try to help others when they are in need be lending a hand in whatever way I'm able be it big or small.  I try and teach my children to put others first, to be kind and try to live that by example rather than it being a speech.  So why me?  Why can't some jerk that's mean and nasty and cruel have Parkinson's Disease?  I then had the dark moment, thankfully I didn't allow myself to go there for much more than a minute.  But I literally had a flash vision of my daughters wedding and me in a corner with a  walker like a big useless lump.  I told myself I'm way to stubborn for that to happen and that was enough of that foolishness.  I can't let my head go to that space, I won't.

Overall I am truly relieved.  I don't think I could have handled anymore 'unsure' time knowing damn well what is wrong.  Knowing damn well how hard little things can be for me some days.  There are so many options out there for me to look into and now I can.  But, of course I am NOT happy I have Parkinson's disease.  What crazy person would be?  And yes, I'm clean friggin' terrified in fact.  I do not want my body to continue to fail me more and more as time goes on.  I don't want to have to explain this to my kids.  I do not want to have to live life like this.  I do not want any of this.  But the reality is, this is the hand that has been dealt to me.  A new chapter of my life (our lives) begins today and I have to trust that God has a plan or this wouldn't have happened to me.  Maybe this is suppose to be my new way to help people?  Maybe I'm suppose to help other young Mom's (or Dad's) going through this?  Maybe I'm suppose to continue to learn hard ass lessons about myself and my life like have come my way these last 15 months about life and love and friendship.  Right now I do not know the reason and I do not know what the next chapter holds.  All I know is that I have Parkinson's Disease and it sucks but I have to accept It and deal with it in order to fight it and move on.

I have three main loves in my life.  My husband that God directed me to at the exact moment in life he was suppose to, I love him and I am grateful for him every day.  My two beautiful girls who are my world.  And let me tell you right here and right now... I will NOT turn into a puddle of jello because I will continue to be a wife and mom to them.  Making fun memories and living life to the fullest!  That is a promise to them!  But, aside from them I have two other loves (aside from the amazing family & friends in my life).  Well lets call them obsessions to be real! Ha!  Red wine (yup, I'm a wine-o) and my very beautiful, very tall, very large, very colorful high heel collection.  And let me tell you another thing.  I will continue to run (even though I don't do it well) and I will continue to horseback ride and I will continue to stay as active as my body will permit not only because I refuse to turn into a puddle of jello but because I refuse to give up those beautiful shoes without a fight.

So tonight I say to you Parkinson's Disease... You picked the wrong chick to screw with... Because I am not or will not go down without one hell of a fight.  So bring it on...

Sep 12, 2014

"There is something about the outside of a horse that is good for the inside of a man" ~ Winston Churchill

There are many forms of therapy that an individual can undergo with many forms of illness.  Some conventional, some not so much.  Part of the frustration of not being officially diagnosed lies with the inability to properly advocate your options for your own care.  There are numerous studies in our region even, such as through the Dalhousie Dept. of Medicine where PD patients can participate to help with more research and in turn possibly a cure.  Clinical trials, Natural treatments, you name it.  So many options that can be explored other than the simple pharmaceutical approach and typical treatments such as Physiotherapy and Occupational Therapy.  Sadly without an official diagnosis a patient is often in limbo and at the mercy of a drug with no real options to explore alternatives until it becomes 'official'.  This is a part of my frustration on this journey, although I am extremely grateful for how far I've come since my initial trip to Saint John in April.  Slowly we are getting there, but confirmation at this point would be a nice thing as strange as that may sound.

I have however taken some control outside of being at the mercy of a drug.  Now don't get me wrong, I'm not opposed to the pharma way if it helps, but it would be nice to have other options as well.  And so far my little yellow friend Levodopa has made parts of my life easier for periods of time and for that I find joy in that part of the journey.  However once I was told at that first appointment in SJ that it was suspected I may have Young Onset Parkinson's, and then that opinion being seconded by the Movement Disorder Neurologist there 6 weeks later I started reading.  A lot.  Read some books, read nearly every article I could online about PD, joined just about every PD network I could through social media and beyond.  There is power in knowledge so I try and saturate my brain with this stuff.  Upon some of that research I stumbled across Equine Therapy or Therapeutic Riding.  This sparked a big interest in me since I have always had a love for horses and did do a bit of riding in my teens.



Wikipedia explains Therapeutic riding like this:
Horses provide a unique neuromuscular stimulation when being ridden through their one of a kind movement. Horses move in a rhythmic motion that mimics the human movement of walking. While riding, the horses stride acts to move the rider's pelvis in the same rotation and side-to-side movement that occurs when walking. The horses adjustable gait promotes riders to constantly adjust the speed to achieve the desired pelvic motion while promoting strength, balance, coordination, flexibility and confidence.
The amount of benefit gained through therapeutic riding differs from person to person based on many factors such as the type of disability, severity of disability, motivation of the rider and connection between horse and rider. Unlike exercise machines that only focus on one muscle group at a time and do not use natural body movements, riding forces the rider to make use of the entire body to steer, control, adjust the horse and maintain balance. Because horses require not only physical skill but also cognitive skill for achievement, riding reveals the strengths and weaknesses of the rider. While most traditional therapeutic techniques often reach a plateau where the patient may lose motivation, the pleasure and excitement of riding acts to encourage patients to work through the pain and discomfort. The act of accomplishing something many able-bodied people are afraid to try is a benefit to those with disabilities in itself.

The physical benefits of Equine Therapy are incredible.  The list includes:
  • Improved balance and muscle strength
  • Improved coordination and faster reflexes
  • Increased muscular control
  • Improved postural control
  • Decreased spasticity
  • Increased range of motion of joints
  • Stretching of tight or spastic muscles
  • Increased endurance and low-level cardiovascular conditioning
  • Stimulates Sensory integration
  • Improved visual-spatial perception
  • Improved gross and fine motor skills


  • Now that all being said/read and being a lover of horses and always wanting to learn to ride English better why wouldn't I want to check this natural option out?  So that's just what I did.  My daughter had been taking riding lessons a while back from Amanda Tweety of Giddy Up Acres located just about 5 minutes from my house.  So I sent her a message asking if she would be interested in taking me on.  She thankfully said yes!

    Now, what's really incredible about Amanda is she knows why I am there.  I am not simply another lesson to her.  She knows that I am there to maintain muscle control in my legs and help my balance.  So my first round of lessons were on a big boy named Roy.  A fairly lazy fellow and as she called it after the fact "a good confidence booster horse".  Of course I did not know at the time that this is why she gave him to me.  As I started to progress, got my mind wrapped around the art of posting and practiced some techniques from years gone by she knew that my body needed a more challenging horse.  So TBone was my next friend.


    Roy, the first guy I was riding!  My sweet little Izabella loves horses and she always enjoys a little walk with Momma on the horsie when my lesson is over!
     
     
    Now TBone is a much faster horse than Roy.  But also required more leg strength. Roy was lazy so I would use a stick to get him to trot where as if you used that on TBone he'd be gone up the field likely in a minute, most likely with me left behind on the ground!  Ha!  He however required a squeeze each time you sat back in the saddle from your post to keep him moving.  I went to that first lesson with him excited thinking how easy it was going to be compared to a lazy horse and boy was I wrong.  I learned very quickly that day why Amanda chose to switch me to this horse.  My leg strength was clearly not as good as I thought it was and it was and continues to be quite a challenge for me.  I struggle on bad days with keeping my heels down and legs back in the proper position.  I am however now conscious of my wrong position and therefore focus on those muscles and keeping them where they should be.  It's very much a mental and physical activity and a sweat fest most days.  For anyone that's never ridden and I don't mean a trail ride where you just sit with the horse on auto pilot and have ridden English style you'll know that it is most definitely a form of exercise.  It can be hard work.  But it's particularly hard work with an often uncooperative body.  So for me it serves a double purpose.  Therapy & Exercise combined.  Both very important for my body.
     
    I've noticed some small changes in the left side of my body whereas so far my issues have been contained to the right.  When I went for my lesson last week I woke up thinking, this is a good body day, I'm going to have a great ride!  Well, it's funny how sometimes you can think it's a good day because perhaps you actually got a little sleep the night before, or your tremor is mild when you wake up, or you're able to move a little easier before you get your morning pill in, or you're not experiencing any major pain.  Until... you try and do something physical.  This was one of those days.  Once I got up on that horse I realized it was not a good body day at all.  While in the saddle I struggled to keep my body still.  My legs were not staying in place and simply did not want to move or do what I was trying to get them to do.  My poor position and moving body confused Tbone which in turn frustrated me.  But I did learn some new techniques on how to maintain control of him on days like that with my reigns, so it was still a great lesson.  But when I got off him I had legs that were like bowls full of jello and I could barely walk. 
     
    It's clear to me now after nearly 5 months of weekly lessons that there is no doubt in my mind that Therapeutic Riding is beneficial to me in amazing ways.  Both mentally and physically.  It's also clear to me that Amanda is very much a part of my "care team".  Although she may not have a medical background she knows why I'm there, cares that I get the benefit I require out of it and adjusts my lessons accordingly.  On days she can tell I'm struggling to get my body to work the way it should she alters her plan for that lesson to accommodate my body's needs.  On days she sees me mount and can tell it's a good body day, she pushes things a bit more teaching me new things, doing a bit more.  Either way I know in my heart that to her I am not just another riding lesson client.  Not just another client that she goes through the motions of teaching.  I am to her a client that she is flexible with and patient with and understands my needs and my limited abilities, but still pushes me to try new things in a safe manor.  I thoroughly enjoy my lessons even on the days where I leave frustrated and soar because even if my body didn't cooperate that well I love the horses and they make me feel peaceful and comforted and give me a little fun while getting therapy.  It's been a joyful experience for both mind and body and I'm so grateful that I found this option for treatment and that I found the perfect teacher for me.
     


     
     
     
    "The mind and body are like parallel universes.  Anything that happens in the mental universe, must leave tracks on the physical one" Deepak Chopra