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!