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Early Pre-Huntington's Symptoms?
by Kelly B. on 05-05-2010 is Published for HD Family Life
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.
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Family
by Kelly B. on 01-01-2010 is Published for HD Family Life
Huntington’s Disease is a whole family affair. 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.
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Sub Cortical Front Dementia in Huntington's Disease
by Phil Hardt on 11-01-2009 is Published for HD Family Life
There is a very pressing need to frankly discuss one of the most debilitating symptoms in the neuropsychiatric sequelae of “softer” symptoms in Huntington’s Disease- sub-cortical “frontal” dementia.
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Managing Medications from a Caregiver's Perspective
by Dave Kendall on 09-20-2009 is Published for HD Family Life
Medications are one of the most difficult issues facing Huntington’s Disease (HD) caregivers and patients
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Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 7
by Phil Hardt on 09-20-2009 is Published for HD Family Life
Return to Part 6
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Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 6
by Phil Hardt on 09-20-2009 is Published for HD Family Life
Return to Part 5 or go to Part 7
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Using Your Words
by Kelly B. on 09-19-2009 is Published for HD Family Life
Learning how to use your words can take a lifetime to learn. 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.
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Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 5
by Phil Hardt on 08-29-2009 is Published for HD Family Life
Return to Part 4 or go to Part 6
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Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 4
by Phil Hardt on 08-29-2009 is Published for HD Family Life
Return to Part 3 or go to Part 5
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Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 3
by Phil Hardt on 08-29-2009 is Published for HD Family Life
Return to Part 2 or go to Part 4
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Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 2
by Phil Hardt on 08-29-2009 is Published for HD Family Life
Continued from Part 1
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Persons with Huntington's Disease Jailed in Juan De Costa, Colombia, South America, Part 1
by Phil Hardt on 08-29-2009 is Published for HD Family Life
Three hugely successful humanitarian trips reveal that the suffering of individuals with Huntington’s Disease (HD) exacerbated because of lack of knowledge, extreme poverty and widespread corruption in Colombia.
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A Matter of Perception
by Kelly B. on 07-19-2009 is Published for HD Family Life
We have all heard the saying that life is what you make it but many people do not realize that the way they perceive things plays a major role.
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Relocating
by Kelly B. on 05-30-2009 is Published for HD Family Life
There comes a time for many of us when we have to leave our homes and neighborhoods in order to seek out better medical care as our HD progresses.
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A Special Gift: The Rose
by Barb Marshall on 04-28-2009 is Published for HD Family Life
On my 50th birthday, I decided I wanted to use this time that I've been given back to do something big, something really important to me.
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Confronting Fate
by Kelly B. on 02-22-2009 is Published for HD Family Life
When I was a child I was told HD was something I would never have to worry about. My real father did not have it so I could not get it. Reality hit in the fall of 1996 when my father tested positive on his first neurological exam.
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A Long Time Ago
by Tim and Karen on 02-03-2009 is Published for HD Family Life
We wanted to know so we could plan our life together accordingly.
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Faith
by Kelly B. on 12-15-2008 is Published for HD Family Life
One of the lessons that I have learned in this life time is that a little bit of faith can go a long way.
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My First Christmas in Heaven
by Julie Sando Teuber on 12-15-2008 is Published for HD Family Life
I wrote something on Christmas of 2000 after a relative passed away. It kind of dawned on me as I was missing her that she was having her first REAL CHRISTMAS in heaven. I wrote this as I imagined how it might be.
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My Friend, My Hero, My Lorna
by Kelly B. on 11-07-2008 is Published for HD Family Life
This tribute to my best friend Lorna is way overdue.
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Stress
by Kelly B. on 09-12-2008 is Published for HD Family Life
Huntington's families carry their own unique brand of stress.
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Living Large
by Kelly B. on 05-21-2008 is Published for HD Family Life
If we are going to live, we may as well live large.
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Self-Advocacy, Part Two: Documenting Disability
by Marsha L. Miller, Ph.D. on 05-19-2008 is Published for HD Family Life
Documenting a disability like Huntington’s Disease can be difficult because there are a multiplicity of problems that combine to prevent an individual from working.
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Talking to Children
by Kelly B. on 04-23-2008 is Published for HD Family Life
Talking to children about Huntington's Disease is a very difficult thing to do. Trying to put Huntington's into words that adults can understand is hard enough but when you have to explain it to children it is heartbreaking because the stakes are so much higher.
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Asking for Help
by Kelly B. on 03-03-2008 is Published for HD Family Life
Life is a struggle for many people. That is the tie that binds all of us together because we are all up against something. If you are feeling down or isolated then reach out to someone in your corner of the world. The support and understanding you need is there for the asking.
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Miracles
by Kelly B. on 12-17-2007 is Published for HD Family Life
It seems only fitting with Christmas only a couple of weeks away that I write this piece on miracles. Miracles come in all shapes and sizes, from the smaller ones that happen unnoticed all around us every day to the most profound ones that have a ripple-effect in our lives.
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A Caregiver's Self Talk
by Maggie on 12-16-2007 is Published for HD Family Life
I often tell myself that if Tony can live his life with dignity, courage and good humor despite his Huntington’s Disease, then I can be a caregiver with patience, understanding and serenity. I tell myself that I will not stand on the street corner and yell at God that “this is not fair."
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HD Testing - my story
by Joan E. on 11-10-2007 is Published for HD Family Life
When my oldest son turned 23 and started talking about getting married, I realized that now there was another generation that would have to make the tough decisions. I decided to be tested.
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Deciding to Continue Testing for HD
by Andrea H. on 11-02-2007 is Published for HD Family Life
The decision to complete the genetic testing for Huntington’s disease was certainly a difficult and painful decision; however above all, it was a personal decision.
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Testing, my own personal roller coaster ride from .....
by DCB on 10-28-2007 is Published for HD Family Life
Six years ago at this time I had a new baby who was just a couple of weeks old. I had decided to be a stay-at-home mom, and life was going great. I had never heard of Huntington’s disease and to my knowledge we didn’t have any medical issues in our family.
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Testing negative and remaining positive
by Michelle on 10-28-2007 is Published for HD Family Life
I think the biggest thing for me was timing. I needed to feel confident I could cope with a positive result.
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New Virginia Chapter of HDSA is Underway
by Tim O'Neil on 10-27-2007 is Published for HD Family Life
Tim and Karen want to organize a Virginia HDSA Chapter and ask that HD families in Virigina join them in their efforts.
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Juvenile Huntington's Weekend September 2007
by Gordon Robertson on 10-26-2007 is Published for HD Family Life
It was a strange feeling going to the JHD weekend this year without my son, Michael, and his friend, Bobby.
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Testing my two children for JHD
by Amy D. on 10-21-2007 is Published for HD Family Life
I would like to share with you our experience with genetic testing. My husband and I adopted two children who were at risk for HD from their birth mother. We knew the risk, but we figured this would be something we would deal with in adulthood.
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Rikki's story
by Myrna on 10-21-2007 is Published for HD Family Life
When Rikki was born on the 3rd of July 1980, something inside me melted.
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An Overview of Testing for Huntington's Disease
by Marsha Miller, Ph.D. on 10-20-2007 is Published for HD Family Life
Before testing for HD you MUST first do your homework. This article will walk you through those things you should consider.
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Testing Positive: Planting a Lemon Tree
by Lauren on 10-20-2007 is Published for HD Family Life
I come from a family (at least my mother's side of my family) who deals well with stress. They take the punches of life as they come, and in that I am so grateful. I don't know that I would have been able to deal with the results of my testing without the strength they ingrained in me.
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To Live 'As If' - My Story
Chapter VIII:The Long and Winding Road Comes to an End
by T.C. on 10-14-2007 is Published for HD Family Life
On February 13th the phone calls began. Though Deb had not spoken at all about HD since receiving her positive test results, she no longer seemed to be raging against it either.
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Hope Springs Eternal
by Heather Dugdale on 10-14-2007 is Published for HD Family Life
Always fight for happiness. It is a fight worth winning. We deserve to be happy, and to live fulfilling lives.
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Ray’s Story: From One At Risk
by Ray on 10-13-2007 is Published for HD Family Life
In many ways, the DNA outcome is not the issue here. For me, we are talking about closure, acceptance, and peace of mind.
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To Live 'As If' - My Story
Chapter VII: I'm Okay, You're Not
by T.C. on 10-13-2007 is Published for HD Family Life
1997 was my third year of living ‘at risk’, while dealing with my sister who had Huntington’s. Why, I wonder now, as I lived those years and even when I initially looked back, did it seem such a long time?
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To Live 'As If' - My Story
Chapter VI:The Second Year Fear Factors
by T.C. on 10-13-2007 is Published for HD Family Life
1996 was the final year we lived in the land of pretend, my sister and I. I took her side, always when she called to rant and rave about what her estranged-husband was now ‘accusing her of’ or demanding she do. In return, she made regular visits with her son, my delightful nephew who had just turned 14.
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EHDN and World HD Congress
by Gordon Robertson on 10-05-2007 is Published for HD Family Life
I was looking forward to the meeting in Germany this year as I had never been to Germany before. It was more exciting for me as JHD had a much bigger part in this years agenda. It was also the chance to meet up with old friends and make some new ones.
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Fear of Being a Burden
by Kelly B. on 09-08-2007 is Published for HD Family Life
Fear of the future is of huge concern to people who have HD and their caregivers and family members and friends. There is no crystal ball to see what the future holds for any of us whose lives are affected by Huntington's Disease.
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How to Have Hope Today, Even If You’re At-Risk for HD!
by Phil Hardt on 09-05-2007 is Published for HD Family Life
Good preparation IS hopeful about the future because you can ensure that you will have years of quality life and ample resources to enjoy them more fully!
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Living life to the fullest
by Gordon Robertson on 07-21-2007 is Published for HD Family Life
Life is for the living. Enjoy and savor every bit. Keep your chin up and know that others are thinking of you.
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Family and Friends
by Marsha L. Miller, Ph.D. on 06-22-2007 is Published for HD Family Life
One of the blessings that come with Huntington’s Disease in the family is that you will come to treasure the family and friends who offer continued support and friendship as well the new friends who will become your extended family.
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Swimming against the Tide
by Gordon Robertson on 06-13-2007 is Published for HD Family Life
When caring for someone with JHD we encounter many problems; one of the biggest is trying to be understood. We try our hardest to explain our situations to doctors, nurses, social workers, etc., but often we are thought to be exaggerating or even bending the truth a bit.
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The Many Challenges of HD
by Kelly B. on 06-13-2007 is Published for HD Family Life
There are so many different challenges involved in living with Huntington's Disease. The trick is to try to look at our journey as a quest rather than a curse.
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Educational Seminar: Caregiving in Hungtington's Disease, Toledo, OH
by Robin on 05-19-2007 is Published for HD Family Life
Huntington’s Disease Society of America
Central Ohio Chapter - Toledo Area Support Group
proudly presents “Caregiving in Huntington’s Disease” Jim Pollard,
Director of Huntington’s Disease Services from Tewksbury Hospital. The seminar is to be held in Toledo, OH on Saturday, June 2.
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