Huntington's Disease
Submitted by Marsha Miller Ph.D. on Tue, 04/12/2011
Fifteen year old Rylee is her mother's caregiver. She wrote this remarkable poem and allowed us to post it here. I think it's wonderful - Marsha
HD Family Life
The Effects of Huntington's
Submitted by Steve Ireland on Tue, 02/01/2011
Having HD can and does make my life extremely complicated. Everyday things that can come easily to other people can become a huge struggle for us. Sometimes I feel like I am somewhat of a ticking time bomb because I have done incredibly well to make it as many years as I have with this disease. I know without a doubt that I am on borrowed time right now. The need to make every single day count before I progress too far is ever present. The fact that I am very easily confused add a lot
Early Pre-Huntington's Symptoms?
Submitted by Steve Ireland on Wed, 05/05/2010
The question of when “onset” occurs has always been a hard one to answer. People in HD families have known for many years that their loved ones' deterioration with HD occurred years before the doctors would or could diagnose it. Our HD does not become real to the medical world until the day we are diagnosed as symptomatic. In the meanwhile we can feel like we are going crazy because we know something is seriously wrong inside of us deep inside but it can be invisible to others.
I
Family
Submitted by Steve Ireland on Tue, 12/22/2009
Huntington’s Disease is a whole family affair. There is not a single member of any HD family out there who is not affected in some way by their HD family member(s). There are many sad stories, but there are just as many people out there who are fighting their own HD dragon with a bravery that makes their family and friends proud.
%TR%
My oldest sister is one of those HD heroes I speak of. Each time I see her she has declined further into her own HD journey. She is a window into my futu
Managing Medications from a Caregiver's Perspective
Submitted by Steve Ireland on Sat, 09/19/2009
Medications are one of the most difficult issues facing Huntington’s Disease (HD) caregivers and patients (pHD). What medications do we need? Who should prescribe medications? What dosage? Why do doctors prescribe one medication for a patient and other doctors prescribe another drug? Are medications really needed? Why is my pHD taking so many medications? What are the short- and long-term side effects? What happens if I stop the medications? Can I change the dosage or change the t
Using Your Words
Submitted by Steve Ireland on Sat, 09/19/2009
Learning how to use your words can take a lifetime to learn. Learning to verbalize what we want or need from those around us can be a scary thing. Some people just are not good at expressing themselves. It is an art that takes a lot of practice, and it all begins with the realization that the people around us are NOT mind readers. No one but you knows what is inside your head at any given time.
Peoples needs often go unmet for the sake of just expressing them. When people understand exactly
Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 7
Submitted by Steve Ireland on Sat, 08/29/2009
Town Meetings
Before leaving Colombia we would hold a town meeting for everyone who had HD or who was at-risk for it. We gave presentations, answered questions, handed out all of the information we had brought on HD and fed everyone. We also passed out clothes that I took down that were donated by a support group of the Hereditary Neurological Disease Centre and also donated by local Catholic school children here in Mesa. Hundreds attended each of our meetings.
I had to pay extra for ea
Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 6
Submitted by Steve Ireland on Sat, 08/29/2009
Jos? Ontoniel
Jos? was confined to the “jail” cell in his own home until right after we arrived at his home to visit. When I asked his spouse if she was still using her “jail” she said “no” but when I asked to use the restroom (to see for myself) she refused and said she needed to clean it first. She disappeared for about 10 minutes before returning with her husband all cleaned up and
told me it was now okay for me to use the restroom. I could tell fr
Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 5
Submitted by Steve Ireland on Sat, 08/29/2009
Leovaldo
During the first two visits to JDA we visited families to give them information on HD and to answer all of their questions about it. We did this from around 8 am until midnight every day. Leovaldo was one of the first person’s with HD that we visited. His one bedroom home didn’t have running water, electricity or even an outhouse. His wife left him but did go by and check on him periodically. His HD symptoms allowed him to be exploited by someone who traded him his
Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 4
Submitted by Steve Ireland on Sat, 08/29/2009
C?ndida
C?ndida is at-risk for HD. C?ndida’s home was one of the ones who didn’t have running water or cooling! She offered to let us stay in her home for the remaining 12 days. This was a very humbling experience for me but worked out great to be our base camp. She would go into my bedroom before I retired to bed and fumigate it and then 15 minutes later would sweep up an entire dust pan of bugs. Her bathroom contained two barrels of rain water. When you showered each mor
