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."