Jan 18, 2015

Fear based Motivation...

We are all motivated in life to reach goals.  Whether they be career, financial, health, personal, family oriented or physical.  What those goals are and what motivates you to achieve them  can vary greatly.
In my life I've had many goals for various reasons and at various stages of my life and level of importance.  In my younger years my goals were primarily focused on that of career.  I set various levels of goals in my professional life and I'm proud to say that I had been very successful at achieving them, not without sacrifice such as education, long hours, determination, moving etc...   I had personal goals about my own growth like spirituality and working on various aspects of myself that aren't perhaps where I'd want them to be.  I find personal goals tend to be something you work on for life.  Perhaps being more grateful in your life, more forgiving, less pessimistic whatever it may be.  Often these goals are partially achieved simply by recognizing you could use some work in a certain area and then it could be a lifelong commitment to get to where you'd like to be.  Then came goals of family, getting married, having children and so on.  I'm blessed to say that so far many of my goals in life have been met, I've been blessed & had much joy.  There were often set backs or disappointments when some goals I thought I wanted at the time did not come to fruition despite the hard work I put into it.  Often I found myself at a later time being grateful such ventures didn't work out because another opportunity that was a better fit would then present itself.  You see I'm a firm believer that everything happens for a reason even the bad stuff or the disappointments.  Well, you get the point! 
What's interesting is when a crisis should hit your life how your goals can suddenly change drastically.   Your focus on what's important goes in a completely different direction and your methods for achieving any goals in your life can take on a completely different path.  What motivates you to get to where you want to be can suddenly be very unusual.  Being diagnosed with Young Onset Parkinson's Disease has definitely changed my outlook on goals, priorities and motivation.
Like many women I've often been motivated physically by a dress size or perhaps a number on the scale.  I had fluctuated in sizes many times over my life so far.  I'm not one of those blessed high metabolizing women that are always tiny no matter what they eat or do.  I've always had to work out to avoid the dreaded belly fat.  Oddly enough after having my second child I seem to have finally gotten "it".  I finally hit a point in my life where I enjoyed cooking healthy meals, of course never giving up a good slice of cheesecake & still having treats.  However I was working out like a madwoman and much to my surprise enjoying it!  I enjoyed boot camp and personal training sessions and how strong & healthy I was.  It was finally not a chore, it was a new lifestyle that I was actually into and loving it (and what it did to reshape my body too).
I finally found the right balance and lifestyle that I loved only to have the physical part of it stripped away abruptly when my right arm became weak & I became shaky.  Fast forward to today and I can honestly say that those 'numbers' whether it be on the scale, a pair of jeans, or a set of weights means absolutely nothing to me anymore.  Although it took a while to get there and accept it I'm completely ok with not caring about any form of numbers when it comes to my physical state.  My priorities have changed, as have my motivation.  Exercise went from being as strong and as fit as I could be and in turn looking the best I could to being 100% and entirely about slowing the progression of Parkinson's Disease.  Now I seek out methods of exercise that were never particularly of interest to me like swimming, yoga, horseback riding and running because they are things I'm able to do and are good for various aspects of my disease.  Important aspects of my disease like balance, gait, posture & strength.  I exercise 4 times a week minimum but aim for 5.  I alternate my activities daily so I don't get bored.  Mondays & Friday's are cardio/treadmill days, Tuesday swimming, Wednesday Yoga, Thursday riding.  These activities not only address issues that are serious parts of PD but they help me maintain my current state of functioning which would still be considered high.  They have been proven that regular exercise can actually help the dopamine producing brain cells that remain to produce more natural dopamine.  Exercise particularly cardiovascular (bring on running) are the only method's proven to help slow the progression of this degenerative neurological condition as no such drugs exist for that (yet).  So yes, I am fearful of what PD will eventually do to my body.  So I am using that fear to do whatever I need to do to maintain my current level of living.  I am no longer concerned about a weight or a size I am solely focused on not getting worse any faster than need be.  That is the one and only reason I now exercise, the one and only thought that goes through my head when I don't feel like doing it. 
I also have a new perspective on health as a whole.  As I've mentioned before I've never been big on prescriptions unless it was really needed.  However I now heavily rely on a pharmaceutical to simply live well with PD.  My little yellow friend levodopa makes my life much more bearable than it was pre diagnosis.  I can't imagine my life without it and thankfully most people that would meet me would never know I had PD because of it.  Provided they never see me first thing in the morning or ask  me to cut a piece of paper, write them a note or maybe help them button something during an 'off' time! 
All that being said I am now extremely motivated to find alternative treatments to make my life easier.  Ways to potentially slow progression but more importantly manage some of the non motor symptoms of PD such as pain, insomnia, bladder & bowel dysfunction, cognitive functions, excessive sweating, swallowing & speech issues and so on.  So comes in a couple of things including a tremendous amount of reading and research.  I participate in any webinars I can offered by various PD groups, attend support groups, I read more than I think I ever have in my life and I truly focus on being my own health advocate.  Nobody knows what I'm going through more than me and therefore nobody can advocate for my health like I can.  If you have a disease or ailment I urge you to be your own health advocate.  I have the most amazing family doctor a person could ask for and a incredible movement disorder neurologist, with an amazing PD nurse on his team, a fantastic Naturopathic Doctor along with other great participants in my care team.  However, none of them have PD so to an extent you have to do some of the work yourself if you truly want to live well with your disease.  So trust them, of course you should they are experts, but do your own homework too & listen to your gut! 
In addition to exercise, eating well & research I take a dandy cocktail of pills in the run of a day to ensure I feel the best I can for the longest I can.  An average of about 20 pills a day to be precise.  However only 4 of them are a pharmaceutical, my 4 daily levodopa's.

For those of you with PD feel free to contact me if you have any questions, comments or suggestions for me about them or anything you take.  I have come to this cocktail thanks to my movement disorder neurologist and my naturopathic doctor.  Levodopa is self explanatory, I take 4 a day (100/25's).  Recently I did get a prescriptions to switch the nighttime dose to a higher slow release pill in hopes that my mornings would be a little easier.  However due to the fear of dyskinesia (a side effect from too much or long term use of Levodopa) I have not switched to that as of yet and am hoping to hold off as long as possible.  Some fear is the bad type!  In a nutshell I take 6 Magnesium, 4 Valerian complex which is my miracle natural that has allowed me to finally get some sleep again!  2 Vitamin D, B-Complex SAP (prevents oxidation of dopamine, increases energy & improves sleep), Gaba-T SAP and 2 Enada brand NADH which can increase dopamine production & "on" periods and can help prevent neuronal death which could in turn slow progression.  All of this little daily cocktail is important to me and managing my daily life with PD.  It can be expensive to sway from pharma to natural.  My supplements run me an average of $300 a month.  However there is hope for the health world yet.  My husbands medical plan has just started covering these things if prescribed by a Naturopath!  YAY for that, although it will quickly run out after the first couple months of the year when it hits their max but every bit helps!

So although I don't like to focus on fear that often but rather on the positives, I would be lying if I wasn't in a sense allowing fear to in fact rule my life.  A great deal of my energy is focused on self care, advocating for the disease and my own health as well as living well with Parkinson's.  I have to, I have two small children and if I don't do the work and at least try everything in my power to maintain my current level of living then what kind of mother am I?  Although there are times I feel selfish for what can seem like putting myself first, if I can't self care, I can't properly care for them either.  Or at least I won't be able to the way I should or want.  So for all those reasons I am indeed allowing fear to run my life and many of my decisions, but I like to think in a good way.  Rather than sitting back and accepting this is my disease and this is what will happen; I choose to let the glimpses I have into the future like seeing other PD patients who are much further advanced in the disease and in fact allowing that to scare me. 
I need that bit of fear present to work hard and be the best I can be. 
I rely on that fear to ensure I am doing what needs to be done so I can be a good mother and wife. 
I use that fear to research and educate so I know any advances in treatments.
I am motivated by that fear to keep pushing and not give up.
I am ok with that fear because sometimes fear can be a good thing!
For those of you with PD check out some of these resource's & information about exercise & it's importance to your continued health & living with PD.  Most importantly how exercise can actually slow the progression of the disease!
and last but not least for any Parky's living in little ol' PEI check out the video below.  The PEI Parkinson's Society is sending someone to NY to study for a week with this woman to in turn bring this "dancing with Parkinson's" program to Islanders.

Jan 7, 2015

Post Op Parkinson's

I ended off 2014 with surgery unrelated to my YOPD.  However it certainly did not go without affecting it.  I started to be plagued with dysplasia since my early 20's.  I had a surgery done many years ago to cut out the bad pre cancerous cells and in turn still be able to have children down the road.  It only worked for a period of time before growing back slowly.  After having our second child these cells started to grow a bit more aggressively and I was having them checked every 6 months to ensure they didn't turn to cancer.  At my most recent test back in February they had started to grow a little more aggressively although still slow.  A decision was made at that point for me to have a complete hysterectomy and salpingectomy.  In regular terms I had my fallopian tubes, uterus and cervix removed. 

Surgery was routine of course for the Doctors.  However I knew it would be far from routine for PD when it came to recovery.  Although I wasn't even prepared for how tough it would be post op.  My hubby and I arrived at the hospital, did all the necessary paperwork and pre surgery talks with anesthesiologist, my surgeon etc... We discussed my PD meds which thankfully they allowed me to take that morning and the fact that I would miss one dose during surgery.  Then the time came for me to walk to the OR.  I had a sudden flashback of my oldest daughter Samantha having her tonsils out just before she turned 5.  I remember how terrified she was and how thankfully they let me take her to the OR.  As I walked her into that scary sterile room full of gadgets she was shaking she was so terrified.  I tried my best to console her as she sat on the OR table and I held her in my arms as she fell asleep to the gas mask on her face and tears streaming down her little cheeks.  I managed to hold it together until she was out and they walked me out of the room at which time I bawled the ugly cry.  It had been years since I had had surgery myself, but in that moment of laying on the OR table a terrible sense of fear of the unknown came over me.  All I could think of was if I as an adult was this nervous and terrified imagine my poor little girl that day.  The last thing I remember is thinking of that and feeling a tear roll down my own cheek as the nurse looked down at me and said "everything's going to be just fine I'll be right here with you the whole time." And with that, I was out.

I woke up in recovery being told how well everything went trying to understand it all in my very stoned state.  And soon after that I was being wheeled down the hall to my room where I was to spend the night and leave the following morning for home.  I was thrilled to see hubby again and was even more thrilled later that day when he brought the girls to see me.  I tried my best to hide any pain I was in and bask in the excitement of Samantha showing me all the lovely homemade cards that her and the other children at the dayhome after school had made for me!  I then spent the rest of the evening in and out of sleep and in and out of pain and fairly shaky from all the stress both mentally and on my body.

The nurse I had that night started to discuss with me at one of my BP checks about how they would try and get me up the following morning.  I discussed my PD with her and explained that my biggest issue with it is not necessarily the tremor but the stiffness and rigidity that comes with it.  How when I even sit in one position for too long my body seizes up and is hard to get moving again.  I explained to her that their best chance for me to get up would be 45 mins after I took my morning Levodopa and that I would need two nurses to try and get me on my feet after nearly 24 hours in bed in one position.  We agreed I would hold off until 7:30 am for my morning meds (shift change for them) and that would give them 45 mins to get their day going before getting me up.  Sadly that didn't happen and it was nearly 1030 that morning before they came to get me out of bed for the first time.  Now over 24 hours in a bed and my morning meds long worn off.  When the nurse came in and said she was going to get me up I explained to her what I had the night before and how she was going to likely need another nurse to help.  She told me that I'd be soar but I'd be fine.  I tried to explain that I didn't mean from the surgery but from my PD and how seized up I was going to be.  She felt she could get me up on her own, but I stressed that I thought that may be a mistake.  She finally agreed and sent for another nurse.  With pain I got to a sitting position with my feet over the side of the bed.  Then with their assistance managed to get to my feet.  I think the majority of my weight was on each of their arms and my right arm tremor was pretty insane.  As soon as I got some weight to my legs my right leg started to vibrate.  I thought to myself "oh dear, this is worse than I had even anticipated".  They then urged me to take a step forward but my right leg was glued to the floor and I felt frozen for the first time since having Parkinson's.  I had read about 'freezing' and heard other people talk of this as it's common with PD but I had never experienced it myself.  They kept telling me to take a step and all I could say through my shaking right side was "I'm trying, my foot is stuck".  Finally I was able to slide my foot forward.  I don't think it came off the floor at all, rather just a shuffle forward with the other foot weighting any steps.  I have no idea how long it took me to get from my bed to the other side of the room where the bathroom is but it certainly felt like an eternity.  After three steps (or shuffles) the RN said to me "so that's what you meant?"  I simply said "yes, but I didn't know how bad it would be".  For the remainder of the day any of my times I need to get up and out of bed, two nurses came without being asked thankfully.  Come 3 o'clock that afternoon I said "so I'm suppose to go home today right?" she smiled and said "ya that's not going to happen".

Thankfully by the time the following morning rolled around and from the multiple times of short stints of sitting up and getting to my feet I was able to walk with only one nurse.   Then by about 1030 am the following day I managed to get up and walk although slowly unassisted.  My nurse that morning called me an over achiever!  Ha! Ha!  I definitely threw them for a curve ball that's for sure.  The night nurse the 2nd night came in at one point and asked me a whole bunch of questions about YOPD which I didn't mind at all.  She told me that they dealt with babies and post partum and gynecology issues, not movement disorders.  So she was curious to educate herself and I appreciated the effort and her compassion once she finally saw for herself what I had assumed would happen.  When it finally came time that I was given the OK to go home and they thought I was moving well enough unassisted she told me that it had been a pleasure taking care of me.  That she thought I was inspiring to talk to given how positive I was and all the things I do to try and keep my PD in check.  That given my circumstances she admired my attitude.  She was very sweet and in that moment of feeling crappy and being in a fair amount of pain I certainly did not feel in any way shape or form inspiring!

It was a slow road to recovering, PD definitely threw an added curve ball into things that an otherwise healthy person would not have to endure.  It's certainly not something I'd want to go through again anytime soon.  However the decision to have this surgery done was certainly a wise one after all as I just received the pathology results.  Although there was no cancer there had been a high grade change in cells since February.  Previous to that all the changes had been slow.  So these results were a huge relief that the right decision had been made and waiting any longer would have at some point been really really bad.  I think I'm pretty tough, but not sure I'm tough enough to have dealt with PD and cancer/chemo as well.  Thankfully the right choice was indeed made although a tough one to make!

So now I start off 2015 with that out of the way, the fear of the big 'C' gone and I can focus on getting back to my exercise to help keep my PD in check.  Now 4 weeks since surgery it's been hard on my body as it feels better and works better with regular movement.  So I'm looking forward to getting back into the swing of things with various activities like running, walking, swimming, yoga and of course getting back in the saddle at riding lessons again in the coming weeks!