Arm yourselves.....raise awareness!

December 2014

It takes a country to raise awareness.  It takes you, to educate your friends and family about Parkinson's Disease.

This past week, with Christmas drawing near, my Forever Friends (3 incredible women I met at University 32 years ago) met for our annual dinner "out".  Each Christmas we get together to celebrate a little cheer of the holiday season.

It just so happened, and not by chance I suppose, that I was a little more shaky than usual.  Being out of the comfort zone of my home tends to do that to me.  So, as we walked from the car to the restaurant in the dark, one of the girls grabbed my arm.  I tend to lose balance very quickly in the dark. 

We were seated, ordered, and began to chat about everything since our last time together.  It gets very frustrating as someone with PD, to follow and contribute to conversation with more than one person.  But, my Forever Friends are aware of this, so pause when necessary, wait for me to contribute, and recognize when I am floundering.  But without emphasis on the situation, we continue to discuss everything that comes to mind.

When dinner was over, the waitress asked us if we wanted a big bulky foam box to take our left overs home.  Right away I responded with a , "No thanks, I'm fine".  With my plate still half full, one of the girls reached over and emptied my plate for me.  She knew without any cue from me, that I just did not want to battle the box, and make a mess.

My Forever Friends, like my family, have been educated about the daily struggles of living with Parkinson's.  As soon as I was diagnosed, it was my goal to spread awareness of the disease, its symptoms, and methods used to assist in daily living. 

I blogged, I wrote, I spoke, and I facebooked about Parkinson's Disease.  I shared information, and read articles and books to and with them.  And because I insisted on spreading the word, they "GET it".  My friends knew how to assist me without asking, give me time when needed, and grab my arm when the situation called for it.  And I did not have to ask or direct any of the uncomfortable situations.  They just got it.

I just wanted to take this moment to remind those with Parkinson's how important and life changing it is to raise awareness of the disease, with those they love.  Everyone that loves you, will learn and ease what could be uncomfortable situations. 

So write, speak, or sing if you have to.  Spread awareness of your disease, and how it changes your life.  Those who love you, will support you in ways you never imagined. 

I should not have been surprised at the wonderful comfort I received that night, after all, I didn't name them, My Forever Friends, for no reason.

Be strong and align your army against this disease.  The battle can be easier when everyone knows the enemy.

Apathy...did I mention that it sucks?!?!?

v  Oct 31/2014

Waking up.  I hate it.  Worst part of the day.  I am sore, rigid, everything feels stiff, and although I have been asleep for 7 hours, I feel exhausted.  My feet feel like they have walked hundreds of miles.  But.....I HAVE to go to the washroom. 

Actually, it is good that my bladder wakes up about the same time every morning.  It is like my natural alarm clock.  Sometimes the only reason I actually get up. I guess this is the, Acceptance, stage. 

I also need to get up to get my medication into me.  This will help all the aches and pains, and get my mind active again.  So, I do get up, have a tea and toast, take my pills, and head right back to bed.  I usually don't get up again for about an hour.  I look at it like having two mornings per day.

This past week, though, that old beast called, apathy, set in again.  I try to explain it to others, but it is hard to really understand.  People assume that means I am depressed.  No, depression is quite different.  It is dark, reaches deep, and envelopes you. 

Apathy, is not like that.  I have previously described it as, "emotional flat lining".  I feel like I am not sad, nor am I happy, I just....am.....nothing.  When I am feeling like this, I don't like to carry a conversation or engage in any type of thinking that would require concentration. 

That doesn't sound too serious, does it?  Well, to me it is one of the worst symptoms to deal with.  I have zero motivation.....zip....nada.  I recently got back into my art work, and writing, and crafting.  I have a new dog to take for walks, and friends who want to get together.  But I will not "feel" any of it.  I want to do these things. bit I just have no interest in doing so.  Does this make sense?

So after my two mornings, I get showered, dressed, and sometimes put on makeup.  Then I sit.  And nothing comes to me.  No desire to move.  My care partner is wonderful for trying to help get me motivated, but it just isn't in me sometimes.

One thing that I have come to depend on is the fact that "this too shall pass".  Eventually I will pull myself together, gather my wits about me once again, and kick apathy to the curb.  How long it takes, is still up for debate.  This is day three, Halloween at that.  Soon I will be "ooing and awwwing" the wee trick or treaters.   It will feel like a chore, but perhaps it will jump start my emotions, so that I can feel again tomorrow.

In my mind, as I sit and write this, I am encouraged.  I have had no motivation what so ever to blog, and well, here I am, doing just that.  Perhaps the apathy is lifting once again,...Tomorrow is a new day, and I am actually looking forward to it.  The flat lining may be ending....or it may not....but tomorrow will come regardless.  That, I can count on....and perhaps I will even enjoy it.

Sometimes ya just gotta laugh...

Oct., 2014

Sometimes, you look back, and you just have to laugh.  Well....the week didn't start out that way.

I woke up, as I usually do and stretched in bed for about 10 minutes.  Then, as always, I slowly got up and sat on the side of the bed until the room stopped spinning.  Well....it didn't stop this time.  I got into a standing position, and used my hands against the wall to keep me in a standing position.  I felt like I had a hang over, but didn't have a chance to enjoy the party first.

I walked to the kitchen, literally banging off the walls, door frames, and furniture.  I reached the dining room table, and plopped...literally plopped down onto the nearest chair.  What the heck was happening?

Throughout the day I continued to experience this spinning of the room, upon sitting, standing, or laying down.  It reached a point where just moving my eyes to a different position would send me into spin mode.  There was something wrong.  My wonderful, loving caregiver helped me to the car, and we drove to the Urgent Care.  Diagnosis.....Vertigo.  Vertigo, on top of the balance issues of Parkinson's Disease.  Wow, this was going south...real fast.

To reference my Movement Disorder Specialist...my life with PD would be slow.  Well, heck, life with Vertigo and PD was at a total stop.  I took my medication as prescribed, and walked along very cautiously trying not to bend down, or make a sudden movement.  For the entire week, I did this well....well enough to make it through the day.  Soon the spinning in my head lessened, but had not fully disappeared.

By the end of the week, the walls were caving in, so I decided to take a walk.  Autumn is my favourite season, and I had yet to walk around the block taking in the different hues of yellow, orange, and burning reds.  I decided to take Bella, my wee Yorkie, with me.  Around the bend of the second block, everything went awry. 

I was walking with Bella across a patch of leaves that lay on the sidewalk in a little pile where water had saturated the ground.  The long and short of it....I fell......I lay sprawled on the ground, and Bella's leash was not in my hand.  Now....it is well documented by my sons, that I fall in slow motion.  They laugh and tell the tales of mom's falling while a deep slow voice is saying, " N...o....ooo...ooooo".  Cute. ( They watch far too much TV.!)

So, back to my walk..., I recall my foot slipping across the wet leaves.   I let go of the leash as I knew I would need my hands to support my fall.  I remember thinking...my butt is going to hurt!!  But in some twisted manner....literally, I managed to go forward, landing on my knee, and falling to my right side, onto my elbow with my shoulder into the fence.  Some how, I slipped ..forward?!?  To this day, I still can not figure out how I landed in that position.


Then....Bella!!  I glanced over my shoulder to see her running in the middle of the road in circles!  This big pink handle was chasing her.  You see, Bella's leash is one of those with the pull back tension spring which had suddenly kicked in and was headed right back to her..  With all of her little might, Bella was determined to out run the handle

So, there I lay twisted on the ground, while my Yorkie was running in circles, for her life.

If anyone saw, they obviously were too embarrassed for me to help, or....couldn't stop laughing long enough to lend a hand.

I managed to get to my feet, pants covered in mud, knee bleeding, and began to chase the handle of a leash, that was chasing my Yorkie.  Each time I tried to step on the handle (remember, I still had vertigo so was having difficulty bending down), the handle would stop initially, but, Bella would run, and the handle would slip from my foot, sending it flying again....and, sending Bella, running like heck, again.

Although it felt like hours of running in circles after the leash,  that was after Bella, I managed to step on it and bend over to pick it up.  All without falling   We limped home, Bella damaged for life, and myself, trying to figure out how I had slipped..... forward.??? .

Well, Bella was not scathed....she continues to enjoy her walks.  And me....Vertigo has calmed and I have learned that I should never leave the house without my trusty walking cane.  When I look back....I just have to laugh.....at myself, and my beautiful little Bella who was  running for her life..

Bye, bye summer....I'll miss you

Sept. 21/2014

Today we celebrated my Dad's 81st birthday.  It is so hard to believe that a year has gone by since we held his 80th celebration.  And, to top it off, it is the last day of summer....officially.  And what a summer it has been!

Having Parkinson's daily is difficult at best, and horrendous at worst.   But as I take in the larger picture.....for eg., the whole summer....I can also add that Parkinson's still allows me, at this point in time, the luxury of enjoying my life as much as possible.  This past summer proves to me that I can still have a full life.

The summer began with a Family Reunion that was 35 years in the making.  I come from a large dutch family, where my father was one of 11 children.  In earlier times we would have a yearly get-together.  But as time goes by, the 11 multiplied to 22, and then would multiply to 48, and on, and on...and on.  At some point, it became too difficult to connect.  So, I took it into my own hands to set a goal that I would bring back the Family Reunion while I was able.  I began with a Family Facebook site, connected with at least one cousin per family, and encouraged the sharing of memories through posting old pictures, and retelling stories of bygone days.  What a perfect hook!  This allowed me to set a date, make arrangements at a park, and prepare the Family Reunion that had been lost over 35 years.  My goal was to have 100 in attendance.....there were 65, and once over, and the event shared, it was such a success that 100 will be no problem to reach  next year..

In hindsight, what was I thinking?!?!  What a daunting task for a healthy individual, let alone one living with PD.  But it came, it went (perfectly at that!), and what a huge success it was....and I lived through it ....and I survived!  There are still many possibilities available to me at this point in my illness, that if I truly want to achieve....I will.  Looking back, other than being exhausted for the week or two following, I did it!

The next thing I needed to get through was my son's wedding.

I have two sons, age 22 and 24.  My oldest son became engaged, purchased his new home, and then wed, all within this past summer.  Typical of a mother, I carried the worries of my child.  Will he be able to afford a house, will he find a house, and how on earth will he get everything done in time for the wedding?!?  And of course, stress heightens PD symptoms.  So, I had to let go, step back, and know that my mother in heaven, would take on the challenge as she always had, and things would all come together with her help..  And so....on the third weekend in August, my son was married, and held the reception in his new back yard.  It was a beautiful day, my other son and his girlfriend were in the wedding, my dad and I attended along side my ex-inlaws and ex-husband, and everyone actually had a wonderful time.  Parkinson's again, did not keep me from one of the most important events in my life.

I did it.  I made it.  I survived it.  The summer of 2014.  Sure my Parkinson's has progressed, but it has not yet swallowed me alive.  Did I mention that I turned 50 this summer as well?!?  So, being 50, and living with PD, has definitely slowed me down, but as sure as the leaves are falling, and winter is on the door step, the warm sunny weather will be back....and I will have to attack the Second Annual Re-reunion yet again.  I did it...I can do it....I will do it.  It is only 9 months away!

One of the Most Difficult Jobs...ever...

https://www.facebook.com/groups/1410983622452317/

  




September 13/2014

There is a job that is very under appreciated, underpaid, rarely recognized, and yet, one of the most important jobs that can be bestowed upon someone.  That is, Caregiver.  Caregiver to an aged parent, a chronically ill child, or a beloved friend who needs care.  It is a job that one takes on, because their heart tells them so.

I wrote in an earlier post, that my caregiver and I had gone our separate ways.  About 2 weeks ago we reconciled, and life has become bearable, once again.  I knew my heart missed him, what I didn't realize was how much my body and health missed him.

I bore the title of Caregiver, twice in my life.  Once, when my mother had Leukaemia, and the second time when my Ex-husband was diagnosed with Parkinson's.  Both times, I just took on the role.  I was an only child, and as my Dad had health issues of his own, I became the one to turn to.  Years later, my ex would be diagnosed PD  about 5 years before my diagnosis, and there was no question as to who would be Caregiver.

The term, Caregiver, is just that....out of "Care", and definitely, "Giver"....give and give until sometimes you feel there is nothing left in you.  So with reminders of my own days with this title, I was more than a bit hesitant on depending, myself, on a Caregiver.  It is a huge burden....although I know I did it out of love, and with complete determination, it seemed too much to pass this torch on to someone else, on my behalf.

5 years ago, I met and dated a man who stole my heart.  We have since, shared a wonderful life, blended our families as best we could,  and created a warm and loving home.  When I received the diagnosis, I gave him the opportunity to run....and run like heck!!  But he did not, instead, he took on a new role....Caregiver.

His role is more important than I had even realized when I had taken on that role.  Being the one cared for, and also having been one who had to give care, I knew all too well what may lay head.  But with his head held high, he attended doctors' appointments, educated himself about Parkinson's, and is always there to assist with all my needs.  He knows full well that this disease is progressive, and it still has not scared him away permanently.

Having a Caregiver, when one has a chronic, progressive disease, is definitely a requirement as I soon found out after our 6 week separation.  Of course I'm strong willed, and would make my way through this new life of mine....but it would be at the expense of my home, my friends, my family, my pets, and my independence.  I could not, as much as I wanted to deny the fact, keep up with the daily expectations of living day to day., alone.   The struggles included, having to get out of bed, face the house hold chores,  feed the pets, do the laundry, make the meals, do the groceries, and still be able to take my medications on time, have my naps when required, and not be able to deal with the day as my health is challenged.  To be able to stay in bed when rigidity wants to take over your body, to be able to take my time until medications kick in, and to be able to look presentable because the laundry has been done, may seem insignificant at first.....but is truly a daunting task, day after day.

One of the most important things he does for me is provide patience and understanding.  When I am frustrated trying to apply my makeup with a shaky hand, and I throw the towel in, and go without....he tells me I'm beautiful.  On weeks when I am house bound, and the four walls feel like they are caving in, he reminds me that we have a home with four walls.  When I break down in tears for no reason what-so-ever. he lets me have my time, then tells me its time to get on with living.  He has tried to fully grasp what I go through by reading my blog, PD articles, and research.....so when I become overwhelmed by little frustrations, he helps me sort through my feelings, and get back on track.

He has shown me the importance of having a Caregiver.  Rather, he has shown me the importance of having a "Carepartner"

9/11 and Garbage Day.....I do Remember....Eventually.

  Sept 11/2014

Today is marked the13th year following of 9/11.  I remember the day well....I remember where I was when I first heard the news, .....I remember getting to a tv , as the second air plane crashed into the second building...I remember feeling frightened about what was to happen next..I remember all the who's, and whats..I remember wanting to go home and grab my two boys, and not let go.  Traumatic, terrible events that we would view live,and  would ingrained into our minds forever.  be

Pictures in books, the newspapers, and on line, captivate and yet sadden our hearts and minds.  Today we remember that horrific day, and although we may not have been directly affected, are as sad and enraged as those who had been.  It affected a nation...the world.  Living in Canada, it felt like it was just next door, happening to our friendly neighbour....

How is it possible to remember these events....so distinctly, and yet, I can not remember if the garbage and recycling go out this week, or did we do it last week?  I am not trying to make light of 9/11 by any means, rather I am struck by how something that occurs every two weeks, and has for the last 4 years, like garbage day, can just completely drop from my mind.

I began this blog by  recalling the images, feelings and emotions of 9/11, as an example of an event, 13 years earlier, that can come to my mind so quickly, with very little effort. But struggling to recall a reoccurring, weekly event in my own personal life, although insignificant in comparison to 9/11, leaves me baffled.  I eventually figure out if it is garbage week, but not without a lot of visual cues (Duh...the neighbours have it out!), to, trying to recall a related incident (Oh yes, my son asked me if 5 bags could be put out last week).  Eventually I will remember if it is garbage week, or not, but not until  I am fully frustrated with myself.

9/11 and garbage week....strange comparisons even in my own mind.  But my point is that daily living can become daunting when one must struggles with a Neurological disorder such as Parkinson's Disease....but remember, I eventually do.   9/11....I can remember all the sensory details I had experienced, and yet struggle to remember the weekly occurrences.  Remembering....that is the key word.  I would and should be more afraid if events such as 9/11 were unable to be recalled.  So, really, in the end...does it really matter if the Garbage truck flies by while the garbage bags sit on my porch?  What really matters is that eventually I remember....events that are larger than life, to miniscule, daily recollections. 

Today I remember that tragic event 13 years ago, in detail, recalling all the senses through the experience, tragic, surreal.  But ask me if I took my meds on time, fed the dog, or put out the garbage..well only time will let me tell.

Aug. 1/2014  Well....um.....huh.   A sad break up, or a time to regenerate?   My caregiver, my other half, and I have mutually agreed to go our separate ways.  We have left the situation in mutual respect and admiration.  Did it scare me?  Hell yeah!!  I certainly didn't care about the material "things" we had accumulated, and who was to have what.....it was more like.....OMG!!  Can I take this PD adventure on my own?!?!?!

My caregiver was a very social man.  Loved to be with people, talk, and just have fun with anyone and everyone.  Yes, that certainly is quite the opposite side of the coin that my road would be leading.  PD was not the reason for our break up, though, most certainly, it entered into the accumulation of factors that ended our relationship.  That damn Parkinson's Disease just keeps taking, and taking.

When I had cancer, I had tremendous support.  The world knows about cancer.  Everyone knows someone who has or, has had, cancer.  There are support groups, home care, and an incredible number of other services available.  With Parkinson's, particularly, young onset, one feels very alone in their struggle.  My medications control my tremors, for now.  So there are very little outward signature symptoms that one would automatically connect to the disease.  Therefore, to have someone fully understand what a person with Parkinson's faces on a daily basis, is next to impossible.

The caregiver, who attends appointments and groups, is given a basic understanding.  Having lost that, yes, one could say I am a little apprehensive as to what the future holds.  But, I'm not giving up.  Just as my "awe" moment awakened me, so has this.  I have the time and the opportunity to plan my own routines, and actually force myself to do the things I want to do.  I will have to fight through the apathy.

The one single factor affecting a Parkinson's patient is stress.  Of course we live in a world where stress is unavoidable.  But I am able to establish myself, in the best means possible, to avoid those every day pressures.  The every day stressor, such as the lawn needing to be cut but the lawnmower is dead....well, those are somewhat more manageable.  I call someone in....out of pocket....ut oh...that leads to a bigger stressor...money management on a disability income.  With my caregiver, I shared these frequent stressors.  On my own....well, we just have to manage them day by day.

So, in the meantime, I am learning to cope, hour by hour.  I try to live day by day, but sometimes life just keeps giving you roadblocks...so hour by hour is easier to live by.  See that...it has been an hour since I began this blog....no stressors.  That makes for an amazing accomplishment!!!


                                                                                                                                                              

Robin Williams - Gave until it was all he had....

  Robin Williams.  Yesterday, it was announced to the world that the comedic and actor renown, had passed away at age 62.  Passed away......if I may, killed himself.

I'm sure everyone is shocked, saddened and have possibly shed a tear or two.  He is to Clinical Depression and Addiction, what Michael J. Fox is to Parkinson's.  With one exception.....he kept his living hell private.
 

Williams often spoke publicly about his decades-long bout with substance abuse.“It’s (addiction) — not caused by anything, it’s just there,” he told ABC’s Diane Sawyer in 2011. “It waits. It lays in wait for the time when you think, ‘It’s fine now, I’m OK.’ Then, the next thing you know, it’s not OK.
Had Williams been more open, gotten past the feeling of isolation and had spoken out, brought awareness to Clinical Depression and Addiction, given all his efforts to research, as Michael J. Fox does, perhaps he would have seen how important his life was....would not have felt so alone and dark.  
Without the familiarity of someone struggling with a disease, the disease is overwhelming and very isolating.  But just say, Michael J. Fox, and one makes an immediate connection to the struggle and life lessons of living with Parkinson's.  If only Robin Williams had been able to do this with mental health issues,  those struggling would have felt a connection, would not suffer silently, and possibly saved a life....perhaps even his own. 

Thank you for the laughter, may you rest in peace.

*  I needed to add this post script.  24 hrs after I wrote this, Robin William's wife made an announcement that he had just been diagnosed in the early stages of Parkinson's Disease.  Wow......just......wow.

I think I have CRS!!!

  June 26/2014

Wow.....all these letters.....PD (Parkinson's Disease), PWP (Person With Parkinson's), DBS (Deep Brain Stimulation), MDS (Movement Disorder Specialist...bla...bla...bla.....  Well, now I have to contend with CRS!!!  UGH!!!

CRS = Can't Remember Shit.  Ok, this may have been pre dx PD (pre diagnosis Parkinson's Disease), but should be considered a medical symptom of a person living with Parkinson's Disease (PLWPD)..  OK (??? short for, alright), lol (laughing out loud).

You get my drift.  When you are accepted into the medical world as a full time patient, such as myself, you soon learn that medical terminology notwithstanding, life becomes a constant barrage of information.  Much of course, I seek myself, but others I just seem to happen upon.

The computer has become my haven.  And yes, I did say, computer....not tablet, pad, or laptop.  I sit at my 20 year old PC complete with 2ftx2ft tower and screen (big, awkward and not flat)....and large, old key board.    With it, I have the latest, updated research from Canadian Parkinson's Association, Michael J Fox Foundation, and of course, the on line Parkinson's chat rooms.  In making these daily visits, I have armed myself.  I am becoming a PD expert.

The age of social communication has come with its own lingo.  So not only am I rehearsed in medical terminology, I am also becoming equipped to mingle with the online world.  I recall entering my very first chat room...um...some 20 odd years ago and seeing "lol".  I thought it was a short form for "hello".  So I would enter these new spaces, called chat rooms, writing lol to every new person that would enter my cyber space.  It was weeks before I realized it meant, laughing out loud.  LMFAO!!! (I'll leave that one for you to figure out!).

But today, at age 50, I am able to search and understand my disease in a manner in which had not been available to previous generations.  Yes, I was born pre-PC!  Imagine!  Because of such advances in technology, we can become our own specialist of sorts.  I can read all of the latest research, advances, trials, and other clinical information, but the most useful, will always remain from those who suffer PD along side of me.  These are the wonderful people I have met in my Parkinson's Chat Room, where we are free to commiserate, cry, laugh and share without fear of rejection or prejudice.  There are over 1000 of us who go there for support.

Support groups are offered locally, through the local Parkinson's Society.  They usually have meetings once a month, for approximately 1-2 hours.  They provide information, have speakers and presentations, and of course a cookie and tea break with which to mingle.  But this is so very limited....limited when you consider what an online group offers.

For one, it is open 24/7.  We Parkies, have a very difficult time sleeping, so it is nice to know that others are up at probably the same strange hours that you are.  The people we meet are from a wide variety of age groups, and world wide locations   This is where I received first hand information about DBS.  They described the journey to, the surgery of, and the outcomes.  Some even make their journey available through video.  I am able to actually see the ups and downs, the hows, and whys.  I'm an expert on DBS, I tell ya.

Then there are the variety of medications to discuss, as well as the side effects.  We PLWP, can tell you more in a few sentences, than any doctor could upon any length of discussion at his office.  A PWP will advocate on the justices and injustices they have experienced in dealing with this disease.  They can direct you to the exact source you need to help you in applying for CCP Disability, for example.  These forums, or chat rooms, are a wealth of information and most inportantly, support.

It is through these chat rooms  that I now am aware that sleep disruptions, apathy, rigidity, and digestive problems are very common.  Oh, and that is how I learned that, CRS is also a common side effect of PD.  So in my micro world in cyber space, my knowledge for PD has been fueled.  Being a PLWPD, I often complain about CRS, to my MDS.  But he will say this is typical of the aging process.  LOL!!!!   I'm only 50!  Real knowledge comes from my PWP friends.  Boy, if my MDS, or MP would go into a PD Chat Room, they would certainly develop a more sincere understanding of our disease.  And we would, LOFAO!!!  (I'll let you figure that one out!)

For PWP, Parkinson's Online Chat Group, Young Faces of Parkinson's, or Patients Like Me, are wonderful sites to begin your quest for knowledge and support.  Now.....ahh.....ummm.......................I was going to add one last bit of advice......ugh!......but.....I CRS!!!  lol      Keep fighting the fight....stay UnSHAKEable!!!

A short documentary on Deep Brain Stimulation.....truly amazing

Deep Brain Stimulation, is exactly that.  It is just one method to help stall the progression of the disease so that one's quality of life can be maintained a little longer.  The why, and the results of this surgery are presented in the following short documentary.  It is examined in a very clear and concise manner through this man's journey.  Please use the link below.  

http://attitudelive.com/blog/robbie-francis/full-episode-living-parkinsons

A Gift?????? Turning 50

June 1/2014

Tomorrow, actually several hours from now, I will be 50 years old.  I woke up this morning pondering that fact.  Started to feel a little sorry for myself.  Pity party, woe is me time.  Remarkably....I had an "awe" moment instead.

My oldest son came by to take me to see his new house.  It would be my first viewing, and I was looking forward to it....even though I was feeling frumpy, lifeless, dull, old.....Did I mention I was turning 50 tomorrow? 

The time alone with your child is so important in their growth.  The time alone with your young adult child, I realized, is very important in MY growth.  In these discussions you realize what a fantastic job you did as a parent.  Well, I pat myself on the back, because if this is true, I did one hell of a good job!!  My sons have to be the absolute best.  Ooops.....off course...runaway train of thought!

So here we were, discussing his future, and the good decisions he has made to get him to this point in life.  Well....pity party waiting to happen, on cue I began to discuss my future....the one that Parkinson's has prepared for me..  And as I was began to express my distaste for what was awaiting me, I suddenly came out with..."well, this is years down the road.  20-30, I'm sure....bl bla bla....poor me...bla bla..." a light went off and I spewed out, "well, like most people that age.  You know, I guess I should consider it a gift to be able to plan ahead for myself.  Everyone will go through it....I am just forewarned."

SHAZAAAM!  BING!  ZING!!!!   In speaking with my son, I had come across the most profound thought that I have had since diagnosis.  I have been given,...get this...sit down if you wish.........a peek at my future.  I can prepare.  I know what is ahead. 

Suddenly all this sayings that I have been banking in my brain for safe keeping, came together.  Seize the moment...Live life to its fullest.....Dance like no one is watching....Live each day as if it were your last.  All of this must have clustered in my brain, smushed together (sorry for the advanced scientific lingo...), and came out of my head, slithered to my lips, and came out as a clever, and poignant, awe inspiring, moment of clarity.  I have been given the gift of preparedness for my future.

My son just shook his head and said, "yeah, really.", and we continued on with our visit.  But this evening, I still have Parkinson's, and am keeping track of  what time I need to take my next dosage of meds,  but not with the usual angst.  I feel like I am carrying a secret, a gift, true clarity and positive vibes....whaaat?!?!?

Tomorrow I turn 50!  And I am young!!  Too young to be wallowing in self pity.  My son helped me realize that I should be using this as, the best time of my life.  Hell yeah!!!   

*This post is a true story, depicting a true experience, to a real person who literally had a light bulb illuminate above her head....thoughts that had been there, all smushed up, and became what the "awe moment" was intended to be in its inception to our language.  Thank you Oprah (I think she coined that term), Michael J Fox (for the awareness of YOPD), and PJ, for letting me figure out what I had known all along, but needed to, "unsquish." 

Emotional Flatlining

                                     May 27/2014

Today is just a dreadful, woe is me, kind of day.  For the last week I have been feeling quite well overall.  So much so, that I begin to live in a dream world where I think, dang, they must have given me the wrong diagnosis.  Then, before I can bury these thoughts as reality....shocker!!!....PD rears its ugly head.

More than the tremors, rigidity, and fatigue...apathy is one of the worst side effects of PD.  The indifference, that I can not fight.  It is not depression.  I have experienced that...no, this is quite simply its own category  and a well documented part of Parkinson's.

Today I don't write with any real purpose except for the fact that I just want to sit and cry.  Now..anyone who knows me, knows I am a crier.  I can cry better than the best, at a funeral, wedding, or sad movie.  I actually have to laugh.  Having attended a funeral of an acquaintance's relative, I was mistaken as a family member because of the wailing condition I was in.  Or, there was the time we were watching a hockey game.  The broadcaster mentioned that one of the players had lost their brother in a car accident, earlier in the week.  Later in the game, this player scored and raised his stick up to the sky.  Instantly I was so touched by this gesture, the tears ran like a river.  My sons looked at me, shook their heads and the one said, Really, mom?!?!?".

But Parkinson's has taken emotion away from me.  I can't really say that I don't feel it.  I think I do.  Rather, I just feel flat lined emotionally.  Today for example, I am feeling very low.  Sad.  But I  actually don't feel it in my soul, I feel it in my head.  It is so very hard to describe.

Likewise, I don't feel happiness any more.  I know when I am happy, but my soul, or the emotional part of my being is just the same.  No highs, no lows....just, flat lined.  I told my Movement Disorder Specialist that I just wanted to feel happy again.  And when I say feel....I guess I really mean, experience joy in my soul.

I am very happy right now as my oldest son has an upcoming wedding planned, and has purchased a house with his beautiful fiance.  My youngest son is completing his studies, and will now be a full fledged Firefighter and Paramedic.  A mother could not be prouder!  Or happier.  And I want so much to feel that natural emotion deep in my soul, like a normal person.  But although I am beyond happy, the actually physical overwhelming , exploding feeling of happy, just sits there.  On the surface.  It never moves to reach my soul.

And today I feel gloom.  Not sad.  Gloom seems to be a much better word as you can picture an enveloping fog throughout my soul.  But I can not reach down to the grips of sadness.  This is where I begin to wonder about the brain and body connection.  I know I am sad, sadder than yesterday, but my emotional feelings are just there.  My brain tells me I'm sad, my body just sits there, and does not respond one way or another.

There have been times, though few and far between, where the emotion can rise from a 0-10 in milliseconds.  It is very scary for me, as I have always been a patient, carefree type of person.  So when this volcano erupts in me....I really scare myself.  I don't know how, in that very moment, to contain it.  I will cry, scream, and say things that I honestly did not know existed within me.  It will take awhile to calm back down, but it ends, as quickly as it began.  The only thing is....people are left standing in the path of its fury. 

So ends the week of deception.  And today I am again reminded that Parkinson's has me it its grip.  Feeling the rigidity again, the pain in my hips and leg, the spastic movements every so often that bring me back to reality.  Good days and bad days.  The one good constant in my life, I guess, is that through all the highs and lows of my day, I stay levelled,  emotionally.  Physically my body is fighting back the forces of Parkinson's, but emotionally, he has given me the gift of just being able to tune him out.  A gift....possibly to strong a word.  More like an unexpected note....not signed and sealed, but definitely, delivered.

Shaken, Not Stirred (trailer)

                                                           May 17/2014

In the lonely world of Young Onset Parkinson's, you are driven to find out as much as you can about the disease.  You want to reach out to people who completely understand what you are going through day to day...symptom to symptom.  And who better than another Parkie?!?!  But where are they???? 

When I was first diagnosed I looked frantically online for support.  And by some blessed chance, happened upon the site, Patients Like Me.  It not only offered me updated information, research, charts to complete, statistics and clinical trials, it welcomed me to an incredible group of Parkies in their Parkinson Disease Forum.  These people are scattered throughout the U.S, Canada, Europe, and Australia, but all come to this one meeting room, online, to support , enquire, understand, and befriend the only other people that fully understand the daily struggles a Parkie faces.

Now, horror stories of online chats and forums run rampid.  So, I was very skeptical about putting myself, "out there", or so to say.  But within days, the support and understanding was tremendous.  Who better to ask about the affects you are experienceing, than someone else who has also experienced it. I have clung to them for support, friendship, advice and piece of mind for a little over a year now.

I am branching out now.  I recently joined a group for Young Onset Parkinson's.  Hence, the video above.  Logging in for the very first time, I spotted this video, and was captivated.  I laughed.  I laughed, and laughed some more.  What a unique perspective, humbling, but also motivating.  It wasn't long before the star and producer of the video,  Alexander Tressor, came on and chatted amongst us. 

To speak of these online people as friends, is not that great a stretch.  Amongst our own, we can whine, complain, and someone will listen.  They will say, "Yeah, that happens to me....here's what I do....".  And often, like a good friend, will give you the advise you don't want to hear. 

I know in my mind, and I have been told by my doctor, to walk, exercise...blah ...blah blah..blaaaa....is what I hear.  Then a new perspective,  like that of Alexander Tressor, makes me laugh but also shows me reality...what I don't want to hear....exercise. 

So, as I conclude this entry to my blog, I will grab my walking stick, (ok....it's a cane, alright!!)  and make my somewhat daily...soon to be daily....walk.  Yuck!  So when people ask me where I get my inspiration to carry on...and I respond, "on line", you will know what I mean.  I have a whole new Parkie family out there who inspire me every day.  And hey....they are available 24/7....how great is that?!?!?

The Dreaded Stages....(.music...dumdum dum duuuuummmm)

 A person, upon hearing the diagnosis of Parkinson's, wants to know how long they will be mobile and cognitively sound.  Each person is affected differently, in scope, also in progress.  One knows the end result....it is progressive....and ....well,  one continues to imagine the worst scenario.  Having a guideline, or a timeline of sorts, helps the new Parkie prepare themselves, but also see that stages can last many years.  The stages below are summarized to give the Parkie a feeling of preparation for what is to come.  It is not accurate in terms of how long or how severe the stages may be, but rather a way to identify and compare oneself with the, "norm"

  I guess what I am trying to convey is the fact that once I came across this general outline of what to expect, I could finally come to terms with and yes....even accept...that I had Young Onset Parkinson's...and it wasn't the end of all my dreams and wishes.

Currently I waver between stage two and three.  It may change day to day, or week to week.  Some days good, some days bad, but hey...it can be a game of  "Guess Today's Stage",    And deep down, I believe I am still years away from stage four....so, life is good.  I mean, really, who else has their future laid out in front of them?  I can prepare, and while I am well, can take advantage of the time to do the things I want to do.  I don't have an immediate deadline, but at least I know that I have blocks of time ahead of me with which I can measure my priorities, or complete my Bucket List.  It is like a peek into my future...and...it's not all that bad.
 
HOEHN & YAHR, THE FIVE STAGES of PARKINSON'S DISEASE

*Stage One:
Signs and symptoms on one side only
Symptoms mild
Symptoms inconvenient but not disabling
Usually presents with tremor of one limb
Friends have noticed changes in posture, locomotion and facial expression

*Stage Two:
Symptoms are bilateral
Minimal disability
Posture and gait affected

*Stage Three:
Significant slowing of body movements
Early impairment of equilibrium on walking or standing
Generalized dysfunction that is moderately severe

*Stage Four:
Severe symptoms
Can still walk to a limited extent
Rigidity and bradykinesia
No longer able to live alone
Tremor may be less than earlier stages

*Stage Five:
Cachectic stage
Invalidism complete
Cannot stand or walk
Requires constant nursing care

This rating system has been largely supplanted by the Unified Parkinson's Disease Rating Scale, which is much more complicated.

CNN Special: Michael J. Fox Talks to Sanjay Gupta

                




Michael J. Fox has made the disease of Parkinson's familiar to a mass population.  Without his face, his name, and his foundation for research.....it would be a very unidentifiable, lonely world for the Parkie.  Early recognition and detection is difficult, but important in receiving the right medication to make one's life more comfortable.  Below I have posted 10 of the most familiar early warning signs. 


10 Early Warning Signs of Parkinson's Disease

No single one of these signs means that you should worry about Parkinson's disease. If you have more than one symptom, you should make an appointment to talk to your doctor.
Early diagnosis of Parkinson's disease gives you the best chance of a longer, healthier life.

*Tremor or Shaking
Have you noticed a slight shaking or tremor in your finger, thumb, hand, chin or lip? Does your leg shake when you sit down or relax? Twitching or shaking of limbs is a common early sign of Parkinson’s disease.
What is normal? Shaking can be normal after lots of exercise, if you have been injured, or could be caused by a medicine you take.

*Small Handwriting
Has your handwriting suddenly gotten much smaller than in it was in the past? You may notice the way you write words on a page has changed, such as letter sizes are smaller and the words are crowded together. A sudden change in handwriting is often a sign of Parkinson’s disease.
What is normal? Sometimes writing can change as you get older, if you have stiff hands or fingers or poor vision, but this happens over time and not suddenly.

*Loss of Smell
Have you noticed you no longer smell certain foods very well? If you seem to have more trouble smelling foods like bananas, dill pickles or licorice, you should ask your doctor about Parkinson’s disease.
What is normal? Your sense of smell can be changed by a cold, flu or a stuffy nose, but it should come back after you are better.

*Trouble Sleeping
Do you thrash around in bed or kick and punch while you are deeply asleep? You might notice that you started falling out of bed while asleep. Sometimes, your spouse will notice, or will want to move to another bed. Sudden movements during sleep may be a sign of Parkinson’s disease.
What is normal? It is normal for everyone to have a night when they ‘toss and turn’ instead of sleeping.

*Trouble Moving or Walking
Do you feel stiff in your body, arms or legs? Sometimes stiffness goes away as you move. If it does not, it can be a sign of Parkinson’s disease. You might notice that your arms don’t swing when you walk, or maybe other people have said you look stiff. An early sign might be stiffness or pain in your shoulder or hips. People sometimes say their feet seem ‘stuck to the floor.’
What is normal? If you have injured your arm or shoulder, you may not be able to use it as well until it is healed or another illness like arthritis might cause the same symptom.

*Constipation
Do you have trouble moving your bowels without straining every day? Straining to move your bowels can be an early sign of Parkinson’s disease and you should talk to your doctor.
What is normal? If you do not have enough water or fiber in your body, it can cause problems in the bathroom. Also some medicine will cause constipation too. If there is no other reason such as diet or medicine that would cause you to have trouble moving your bowels, you should speak with your doctor.

*A Soft or Low Voice
Have other people told you that your voice is very soft when you speak in a normal tone, or that you sound hoarse? If there has been a change in your voice you should see your doctor about whether it could be Parkinson’s disease. Sometimes you might think other people are losing their hearing, when really you are speaking more softly.
What is normal? A chest cold or other virus can cause your voice to sound different but you should go back to sounding the same when you get over your cough or cold.

*Masked Face
Have you been told that you have a serious, depressed or mad look on your face more often, even when you are not in a bad mood? This serious looking face is called masking. Also, if you or other people notice that you have a blank stare or do not blink your eyes very often, you should ask your doctor about Parkinson’s disease.
What is normal? Some medicines can cause you to have the same type of serious or staring look, but you would go back to the way you were after you stopped the medication.

*Dizziness or Fainting
Do you notice that you often feel dizzy when you stand up out of a chair? Feeling dizzy or fainting can be signs of low blood pressure and can be linked to Parkinson’s disease.
What is normal? Everyone has had a time when they stood up and felt dizzy, but if it happens on a regular basis you should see your doctor
.
*Stooping or Hunching Over
Are you not standing up as straight as you used to? If you or your family or friends notice that you seem to be stooping, leaning or slouching when you stand, it could be a sign of Parkinson’s disease.
What is normal? If you have pain from an injury or if you are sick, it might cause you to stand crookedly. Also, a problem with your bones can make you hunch over.

(The above information is from "Medronic"

Larry King Live :Michael J. Fox and Parkinson's -Part 1/2

Young Onset Parkinson's Disease                                                       April 25/2014

Optimist....Optimism.....Michael J. Fox has even coined himself, The Incurable Optimist.  This is quite evident in this Part 1 of 2 video interviews with Larry King.  Without Michael J Fox, how much would we really know about Young Onset Parkinson's???

 When I tell people that I have Parkinson's Disease, they often stare at me, in a manner which tells me  they are thinking, " Well....I have heard of it......haven't I?".  But if I follow it quickly with, "You know, Michael J Fox..."., I always get a resounding acknowledgement that yes, they do know what it is.

Michael J Fox, in this interview, discusses dealing with Young Onset Parkinson's since the age of 29.  He describes how it affects his everyday routine,  using the example of brushing his teeth.  These little common rituals that we take for granted are things that Parkies dread on the down days, but on better days, can find the humour in it.  And humour is what Michael J Fox is known for.  He does briefly touch on the fact that upon diagnosis, he was not that funny, or optimistic, rather he buried his fears in alcohol.

Here is the Poster Boy for Parkinson's Disease.  At 29....he was living a lonely existence.  After all, it is he, himself that brought awareness of, research in, and funding of the Disease.  He admits, it took him 7 years upon diagnosis to be able to discuss it openly.  And thank God, that he could.  Where would we be without him??  Personally, because of the attention he has drawn to this disease, I am so much more enlightened and confident as a Parkie.

"Don't wish for a lighter load, wish for broader shoulders."  Michael J. Fox.

Enjoy this video clip.

                                                                                                                      

Parkies....Carry On

                                                                                                                                                                             
April 11/2013

I belong to this incredible website for Parkies, which offers a forum where experience, research and knowledge is exchanged in a way in which only someone experiencing the same, really "gets" you.  They are young, old, from Europe, Australia, US, and Canada.  But the common denominator is that each is struggling with their diagnosis, Parkinson's Disease.

A member will discuss an issue of concern, and many will respond.  Some ideas are based on research, while the most beneficial, are based on experience.  At times it can be a warm spot to land, while other times you must distance yourself for a day or two.  These members become friends.   You feel this incredible connection as you struggle with, and help each other through  issues of the day.

Most recently, a member posted about the positive things he has experienced living with Parkinson's.  Following suit, other members added to the list, and before you knew it, we were all finding positive outcomes to our negative experiences.  The following day,. another member posted his song video that inspires him...and likewise, many followed with the links to their song of inspiration.

When I sat down to blog today, it was with the intention that I look at having Parkinson's from a positive perspective.  Until we went through this in our forum, it was a very hard thing to really contemplate.  But supporting each other and adding to the list...some ideas practical, others very humorous, made us look within ourselves and draw out positive, only, thoughts.  Don't people pay through their teeth to experience this exercise with a Psychologist????  My list begins as such:

*being a Parkie allows me to nap without excuse.
*see my future and be prepared for it
*take a forced, yet early, retirement
*be able to claim my own personal chair (my leather recliner!)
*have an excuse for forgetting
*someone else will always insist on pouring the drinks, or passing the gravy
*allows an excuse for me not to attend
*makes people think you look great because they expect the worst
*others volunteer to drive
*will eventually have the best parking spots (handicapped sticker)
*the only schedule I am bound to, is that of my medications
*if the weather outside is frightful, I can just look out at it

The list was not to make light of my disease, but to push my daily negative struggles aside and say, "hey, I've got it, make use of it".   The video, Carry On, just kind of sums it up for me.  Through all the struggles, there are the bits of light that I should allow to illuminate....however sporadic or small.  But always, always...Carry On.

Thunderclap....My Mission - Youth Tipped

 UnSHAKEable@Thunderclap was tipped on October 21, 2013





Here it was, September 2013, and I came across this site called, Thunderclap.  Thunderclap was set up to promote causes or messages on sites that could be voiced around the world.  How I found this....I honestly don't remember.  What I do remember is this incredible, amazing push, by people I knew, and people I didn't know.  A push to help me launch my site, UnSHAKEable.  And my greatest supporters, were those who were probably the least aware of my cause......the youth.

I remember reading the introduction to the Thunderclap premise.  It worked as such:
-submit a brief introduction to your site
-decide on a specific target amount of supporters for a 30 day window of opportunity
-have it approved by Thunderclap
-begin promoting your site
-if you reached your goal of supporters, the success would be "tipped".  (your message would be launched to the audience total of your supporters in one, big, "Thunderclap"

And, so I began.  I had this goal in my mind that I would try to educate as many people as I could, about Young Onset Parkinson's. Until Thunderclap, I had no idea where I would even begin to draw an audience
So, what the heck, I decided to submit my idea and see what would happen  I really felt that this would be a long shot, as I looked over some of the causes that had already been "tipped", one of which was, #ThinkABLE, with Michael J. Fox.  Wow!  Big leagues...they had projected 5000 supporters.  I reviewed and studied many of the sites that had been pitched and were awaiting their goals, as well as those sites that had reached their goals.  So, as a result, I set my goal at an attainable, 100 supporters.

With my goal in hand, I sent off my site for approval from Thunderclap.  Within 48 hours I received, "Welcome to Thunderclap, your site, UnSHAKEable, has been approved".  I was ecstatic, to say the least.  Now I would have 30 days to promote and entice 100 supporters.  "GULP"!   This may certainly be a difficult task to swallow.

Surely there must be some interest in Young Adult Parkinson's......right?....but where to begin??  Quite honestly, who would share enough interest to actually throw me some support?  100 to be exact.  Well, it came from the place that I had least expected it to come from...today's youth.

I sent a quick message to all my Facebook "friends".  I know many of them must have been shaking their heads thinking, what the heck is she up to now??  But slowly, a couple of friends and a few family members submitted their names as supporters.  I think perhaps my first attempt netted me a  total of 9 supporters.  Wow....my goal was, WHAT?!?!?  I waited a day or two, spiced up my site, UnSHAKEable, and delivered a hopeful message, again, to my Facebook friends.  I think I was able to conjure up about 5 more.

Thunderclap had a base site with which you could follow the number of supporters for the hundreds of submissions that they had.  The closer a site got to reaching its goal, the closer the site moved up in ranks on their pages.  Mine had at this point, ranked about page 67.  I sat there thinking to myself, "how badly do you want this?  How much would it mean to you to be able to educate people about Young Onset Parkinson's"???  I kicked it into high gear.  I was not ashamed to plead, beg, or simply terrorize my Facebook friends.  Suddenly, the whole mission took on a life of its own.

Friends were encouraging friends, and family, and complete strangers to support, UnSHAKEable.  But what absolutely blew me away, and still brings a tear to my eye, is the force with which the young people I knew, pitched my site to their friends.  It was absolutely astounding and so very humbling to see the supporters adding up, and inching closer each day, to that goal of 100.

My two son's girlfriends, and Frank's two daughters, all of which probably averaged 24 years of age, were on a mission to help me with my goal.  They sent messages to friends, begged for others to invite their friends, and my goal was inching its way daily! I watched my site climbing up higher and higher on the Thunderclap  page status.  These young people, whom I had never met, and whom probably had never even heard of Parkinson's Disease, rallied support that was truly, unbelievable!

With one week to go, I needed 23 more supporters.  These young people kept recruiting, with 12 days to go.....reached 107 supporters!!!!   My message (site) would be launched by Thunderclap.  It had been such a truly awesome, yet humbling experience.  How many negative messages do we hear about, today's youth?  Many.  But when I saw the depth and breadth, that they would go to, to support a cause for each other...my faith in our young adult generation was totally renewed and strengthened.  To see how they would reach out....to a total stranger...just because a fellow friend, buddy, peer, had asked them to.  To throw their hat in the ring for a disease that they had probably never even heard about...well, was just beyond anything I could have imagined!

On October 21, 2013, UnSHAKEable@Thunderclap, was launched to the world.  "Tipped" to an audience of 27,938 to be exact.  And their friends would tell their friends, and so on, and so on.  It was on this day, that I heard a huge Thunderclap ring out a message about Young Onset Parkinson's only through the determination of a few wonderful young people, to support this one crazy lady, who had this crazy idea....that she should share her message with the world.  The message that, by being informed, one could remain, UnSHAKEable!!

Donna....Parkie of One..this way please.....

 April 2014


Have you ever had to wait in line at a restaurant...wait for your name to be called?  Everyone seems to be moving along, being seated, and all the while you are observing delicous food being served, laughter and conversation being shared.....and you just sit and wait.  For a Parkie, that is life in general.

 An estimated seven to 10 million people worldwide are living with Parkinson's disease.  Incidence of Parkinson’s increases with age, but an estimated four percent of people with PD are diagnosed before the age of 50.  Men are one and a half times more likely to have Parkinson's than women.

Wow...those are some stats!  7-10 million Parkies, of which I am one of the 4% diagnosed prior to age 50, and I am a woman.  Feeling lonely yet???  It is very difficult to understand the disease even as one who owns it.  So how can I possibly expect those around me to really grasp what it is like to own, have, live with, bare with, and accept, being a Parkie?  A 49 year old woman, who did not beat the odds, that were in her favour,.  Yep....feeling like a "Parkie of one.."

My friends, most of whom are around my age, are seeing their children off to post secondary institutions, watching them begin careers, or contemplating starting their families.  All of this, while they, themselves my friends, are now peaking in their own careers, planning their road to retirement, and beginning to enjoy an active adult lifestyle free from the worries of raising children.  It has become the age of "our time".  But, me, Parkie of one, is already facing the next junction in life...retirement/health/financial directives of the aging.  I feel very distant from my own, and not fully accepting of the steps I am faced with.  It seems I have not just missed a step or two, I missed a whole staircase that led to the "middle age" floor, and landed directly on the "senior's landing.".

Being in a small town also adds to the loneliness.  Remember, I have had cancer.  Everywhere I went, everyone I knew, either had had cancer, or had someone near and dear to them, with it.  People were familiar with the chemotherapy and radiation treatments.  People were very familiar with, and could relate to what I was actually going through.  I was never, ever at a loss for a fully understanding, compassionate individual who could make me feel understood.  But, there are few women, under age 50, with Parkinson's Disease.

I have attended the local Canadian Parkinson's Society monthly meeting a few times.  Besides the 40 minute drive to and from, the topics and the "atmosphere" are generally geared to those Parkies who are further along in condition and age.  And, of course, the majority are men.  So how do I find someone who can really and truly identify with my condition?  So far, it has been online.  I joined an amazing website where I am able to converse, inquire and participate in a large variety of discussion directly related to what I am going through.  And....being a forum....is open 24/7.  This past year I did miss out on the yearly Parkinson's Convention in Montreal.  It was a huge symposium which more likely than not, will not be held in Canada again for a few years.

So, in my small town, in my small world...Parkie of One....is being called out, as I sit at my computer and bond with people from around the world.  My online family have become a life line to reassurance, information, and sometimes, even a good swift kick in the pants to set me straight.  In this cyber world...as much as we hear the negative aspects,  my online Parkie Family, have become a God Send.  They really get it....have it.....and are always there, 24/7.  Perhaps one day we'll have the opportunity to meet, and I will become Parkie of Many.  

My Motivational Video of Choice

Please take a moment to copy and go to this very inspiring video.  It is not specific to Parkinson's Disease, but is one that reminds me that I have to face each new day as a challenge, and drive to be.  UnSHAKEable


https://www.facebook.com/photo.php?v=600953526647674



 Choose to live with Parkinson's Disease, UnSHAKEably, by fighting the fight.  Have it, don't BE it!                             
                         

Invisible...Most of the Time

March 15, 2014

"You look great!"  Anyone would love to hear that, right???  Well, sometimes it is a difficult thing to hear.  Seriously....I know that sounds odd, but let me explain further.

Parkinson's Disease is often undiagnosed until signs of tremor.  Michael J. Fox first comes to mind when you think of this disease...his almost spastic like, uncontrollable movements.  What most people don't realize is that these, body tremors, are a symptom of high doses of the Parkinson's medication.  The medication, when first taken, in smaller doses, helps small tremoring subside.

So, if the medication controls the tremor, what else does a Parkie (my loving term for those of us with Parkinson's) contend with?  Well, a variety of ailments which are basically, invisible. They include:

• Bradykinesia:
• Rigidity:
• Postural Instability:
• Freezing: Freezing of gait is an important sign of PD that is not explained by rigidity or bradykinesia. People who experience freezing will normally hesitate before stepping forward.
• Micrographia: This term is the name for a shrinkage in handwriting that progresses the more a person with Parkinson’s writes. This occurs as a result of bradykinesia, which causes difficulty with repetitive actions. Drooling and excess saliva result from reduced swallowing movements.
• Speech problems, such as softness of voice or slurred speech caused by lack of muscle control
• Difficulty swallowing
• Sexual dysfunction
• Cramping 
• Excessive Daytime Sleepiness
• REM Behaviour Disorder
• Mood 

So back to my initial stance...when someone compliments me, that I look well, my insides tell quite a different story.  Currently, rigidity, is my enemy.  To explain it quite simply, it feels like my entire body has stiffened up at each joint.  Rigidity causes stiffness and inflexibility of the limbs, neck and trunk. Muscles normally stretch when they move, and then relax when they are at rest. In Parkinson’s rigidity, the muscle tone of an affected limb is always stiff and does not relax, sometimes contributing to a decreased range of motion. People with PD most commonly experience tightness of the neck, shoulder and leg. A person with rigidity and bradykinesia tends to not swing his or her arms when walking. Rigidity can be uncomfortable or even painful..

The pain and stiffness that I am currently battling are totally unpredictable.  I have tried to track whether it is worse after a day with exercise, a day without, after a day of activity, or after a day of very little activity.  So far I have drawn no conclusions.  It is day to day, and sometimes even hour to hour.  But the pain and stiffness is not something that can be seen.  Oh, I may look like a completely normal 49 year old when I am out and about...but don't let that deceive you.

The most difficult part of these invisible symptoms is that the people closest to you (those who live with you) are the ones who do not notice.  I have learned not to complain.  Hell, if I complained with every little ache and pain I have, I would be taken away in a straight jacket.  So, most of the time I try to deal with the pain myself.  That being, keeping on top of medication requirements, and using an ice pack or heating bag when needed, or finally, just trying to find a comfortable position to stay in.  I also have realized, to my own chagrin, that my daily walks, aided by a cane, help my hip pain dramatically.

Yes, there!  It is out in the open.....I will use a cane when necessary.   This is definitely  an issue of vanity for me.   How can it not be, when my 80 year old father lives with us, and is more active than myself?  But, the cane works very well on my daily walks around the block.  When I don't have it to rely on, I find that half way through my trek, I will be leaning to my right side, and my hip and leg are achy, and sometimes it may even  feel like giving out.  My next purchase is definitely going to be a designer cane. The narcissistic part of me has risen!

Much research has gone into the lifestyle suitable for PD.  Of course it endorses exercise (as my Movement Disorder Specialist told ms, "Use it or lose it"). healthy eating that is lean on protein (for the purpose of quicker absorption of the Levocarb) which, does in fact conflict with my Diabetic diet of the requirement of protein intake with carbohydrates. 

So, actually, the long and short of it is, if I cringe when you compliment how well I look, remember, I might just have to kick you in the shin. 

The Tattoo that Keeps on Giving

Endurance

                                                    
It must have been in the year of 2006.  My oldest son had been wanting a tattoo for as long as I can remember.  I had explained that a tattoo is forever, so if he was seriously wanting something on his body that would be difficult to remove, it should be  representative of something very meaningful to him.  So needless to say, he spent about a good year debating the merits of what he actually wanted.  He showed me what he had designed.  It was beautiful....it was a symbol that reflected the important people in his life, his father, mother, brother, grandmother (who had passed) and his grandfather.  Now, how could I argue with that?

So, the big day came and I went with him.  As they were preparing him, I was glancing through a collection of Chinese symbols and reading the meanings behind each.  The above symbol jumped right out at me...screaming...."This is you!!!  This is you!!!!".  Well, really, how could I argue with that?  The descriptive words were: adaptability; resilience; awe-inspiring; overcome adversity; overcome all difficulties.  As my son was prepped and ready to go, I leaped across the room with the book in hand, son probably thinking I am out of my mind, and said, "I want this tattoo.". "Endurance"  The young man looked at me, said, "I've done a lot of father and son tattooing, but this will be a first for a mother and son tattoo."  My son looked proud...until I pointed out that I wanted it positioned at the top of my left breast.  That was when my son shook his head.  I knew that meant, "Oh my God Mom...you are so embarrassing"....but deep down, I think it was a proud moment, in a weird sort of way, for each of us.

The reasoning behind the position of my tattoo was that my left breast had been removed through a mastectomy, and I had had it reconstructed.  I had beaten the pulp out of breast cancer, surgery, chemo, surgery...over the span of 1 1/2 years.  I wanted this tattoo to show what I was made of!  I wanted it where I could see it, and where it would be covered most of the time so that I would choose with whom I wanted to share it with.  So...in bold black and white Chinese symbols, Endurance, is permanently inked on my body.  

By that time in my life, I had endured a lot.  Hodgkinson Disease at age 21, diagnosed Diabetic (insulin dependent) , the death of my mother (at age 56, Leukaemia), and what I felt deep, deep within my soul...a marriage that was crumbling before me. Getting this tattoo would be a constant reminder that I had endured, overcome difficulty, and was resilient.  

That tattoo became my mantra....but little did I know, as much as I loved that tattoo, as much as it was part of me and my personal struggles, it would actually come to define the rest of my life.  Parkinson's Disease.  OK, let us review the words reflecting the inspiration of my tattoo:.  1.  adaptability  2.  resilience  3.  awe-inspiring  4.  overcome adversity, and 5. overcome all difficulties.  Wow.

Suddenly this permanent ink blotch described all the traits that I would need to carry me not just through the bad times....but now,  permanently affixed,  as part of the rest of my life.  You see, I have learned that one of the scariest words to hear is, progressive.  You can't fight that word.  You can't postpone the inevitability of that word, you can't change it.  Parkinson's Disease is p-------e.  Like a HUGE curse word! Progressive.  No significant awareness of ending.  Well...P---------E   THIS!!!  

I ponder whether, endurance and progressive are compatible.  I could endure the tough times I had been through....but will this endurance continue to carry me to a very unspecified, yet, very specific, lifetime of progression?  Does that make sense to anyone else??  I have been given challenges to endure and overcome.  My future with Parkinson's....can I endure what is not only a challenge, but something, that probably in my life time, will never be cured?  Something thats only guaranttee is to worsen?.  P------E  ME!!!!!

I can also look at my tattoo, its significance and see that, adaptability, is now the essential meaning   So heck...I shall keep my tattoo, it shall keep me inspired, and hey, just maybe, the tattoo really doesn't say, Endurance, after all.  I don't know Chinese.  Perhaps he really wrote "I'm a loser" or "Kick me".  I have faith that is says, Endurance.  Now, I just have to keep the faith that I can continue to, endure.  

In the end....Parkinson's Disease.....P-------E YOU!!  (That may be my next tattoo!) .