"Knowledge is Power"
Without realizing it "we" speak our own language - Parkinson's!
We have our terms and phrases and those around us "don't get it"!
PBH-ORG.COM is on a mission to teach the public, our family, friends, and the world, "The Language of Parkinson's".
Yes, you too need to "Learn to Speak Parkinson's"
It is time for everyone to learn The Language of Parkinson's!
“How do you relate to a new best friend whom you hate? This new friend called Parkinson’s that has brought so much good into your world and yet holds every probability of wrecking your life, Two friends whom you hold close while hating the one and holding little love for the other ... ".
And for the "Rest of the Story", well, just listen to Tim Hague, Sr.
The above is based on information and knowledge gained from within Parkinson’s Better Halves, and many other care groups, by listening to the experiences of the one doing the caring. I also know as they move forward in this journey, the carer’s need for connections to others can almost overwhelm them. So, take the “definitions” as you may, but know this, they are offered in love.
The health of those with Parkinson’s is impacted by everything around them. This is a fact! A fact that is little-recognized or talked about and must change. Those with Parkinson’s will need many things, but this journey should start not only with the care person but also with their family and friends, their future "Circle of Care". We must learn and share the fact how Parkinson's impacts, and causes collateral damage in areas not addressed at this time.
“Collateral damage - injury inflicted on something other than an intended target; specifically”
Collateral damage needs to be a consideration, especially in Parkinson’s. We can’t help solve a problem if we don’t know, and/or recognize, all of the issues that lie within? This often involves the ugliness of a situation, the here and now - the realities. We must face the collateral damage first to properly protect the “injured”. We must create a safe space and we need special tools to do so.
Fact, we are not here to share and spread hope; we are here to talk about the ugliness of Parkinson’s and how to face it head-on! It is important for care persons and families to know what may lie ahead - the realities of this hideous disease! .
With the proper information and knowledge of what may come, "The Circle of Care” around those with Parkinson’s can lead to improved lives of their loved ones with Parkinson’s.
Teaching how the knowledge and acceptance of Parkinson’s is a game-changer is a game-change, within itself. The “The Circle of Care" is often the rescuers, the first responders, the store clerk, and the auto mechanic. We must help educate and strengthen each one of those entities.
Envision a building crumbing down around someone. They need to be saved! The support system of those with Parkinson’s must be strong and will often need reinforcement as Parkinson’s is constantly eroding it. PBH-ORG.COM’s mission is, first and foremost, to create major reinforcements for those within "The Circle of Care.
PD: Parkinson's Disease
PwP: Person with Parkinson's
d63n71: Person was diagnosed at the age of 63 and is now 71
AC: Adult Children
CP: Care partner
ECG: Essential caregiver
EOL: End of Life
VA: Veterans Affairs
MDS: Movement Disorder Specialist
UTI: Urinary Tract Infection
NoH: Neurogenic orthostatic hypotension (low BP)
DLB: Dementia with Lewy Bodies
LBD: Lewy Body Dementia
PSP: Progressive Supranuclear Palsy
MSA: Multiple System Atrophy
C/L or Carb/Levo: Carbodipa Levodopa
DBS: Deep Brain Stimulation
Organizations & Foundations
PMDA: Parkinson & Movement Disorder Alliance
MJFF: Michael J Fox Research
DPF: Davis Phinney Foundation
APDA: American Parkinson's Disease Association
PBH: Parkinson's Better Halves