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!!!