Philly Cure HD
Notes & News 
for our local 
HD Community
Philly Cure HD - Improving the lives of those local individuals 
affected by Huntington's disease, HD, and their families by: 
PCHD - Mission points
 PHILLY CURE HD                                                         September 2016
Upcoming EventsUpcoming
Music Magic - An HD Social Gathering
Our Fall HD Social Gathering
Thursday September 29th at 6:30 PM.  Please RSVP for our fall HD social gathering, Music Magic.  We will meet at Fellowship House in Conshohocken were we will enjoy great people, fun musical activities and a snack.  


Caregivers Gathering
Tuesday October 4th, 6:30 to 8:30 PM.  Our HD Caregivers meet every other month. Please RSVP


Monday Morning Caregiver Chat 
This is a weekly, Monday 10 AM, Facebook chat moderated by Joanne, our HD Care Consultant.  To join the chat contact Joanne. 
Understanding HD symptomsA
Empathy
One way to better understand what it is like to live with Huntington's disease is to hear directly from individuals who are experiencing it.  Our September Newsletter introduces three individuals who bravely share their early experiences of living with HD.  We encourage you to find out what they say. 


Empathy -  the ability to understand and 
share the feelings of another.

Life with Huntington's Disease

B
Katie Beers
Katie Beers blog Living With Huntington's Disease
Katie writes in her blog 


"... I felt it coming on so strong.  And knew, unfortunately at that point, that a freak out was inevitable.  And before I knew it, sure enough, I was barking at the kids.  I think this happens mainly because when I am having anxiety, loud noises or a lot of people talking all at once, is really a sensory overload, and I can't handle it. ... I feel myself losing my footing in the real world.  ... And I feel deep within me, that I MUST be angry.  I must be mad at someone, at something.  I must carry out my mission to make everyone else know that I am suffering. ... Reminding me that I am also no longer in control of my body."




Read more about Katie's HD experiences in her blog
"Me and HD" C
Me and HD
Sarah Foster writes of her HD experiences in her book "Me and HD Volume 1". 


"Images like print and pictures don't fade away as quickly as sound does.  For the same reason, I prefer texting and emailing my friends instead of talking to them so I can remember the information and have a record to refer to if I still forget what they have told me."  




for more about Sarah's book 
 
"A Prayer of a Lifetime" D
The Prayer of a Lifetime
Excerpts from James V D'Amboloa Jr's book:


"
My HD started at age 25.  The first symptom I experiences was small, infrequent chorea.  During this time, I was doing science research.  This made my chorea obvious because experiments required fine motor control."


"My balance and coordination are very bad.  Also I cannot sit without fidgeting and my body is never still.  Every step that I take is earned and requires focus.  Unfortunately, all the focus in the world can't get my feet and legs to do what I want them to."


Click here for more about Jame's book
Like us on Facebook   Find us on Pinterest   Find us on Google+   View our videos on YouTube
Copyright © 2015. All Rights Reserved.


Philly Cure HD Inc. | PO Box 4054 | Philadelphia | PA | 19118