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.