HD Family Life

My First Christmas in Heaven

%TR% It’s my first Christmas in Heaven and I could not ask for more For I am seeing with my own eyes that which I have only read about before Other loved ones that have gone before; I have waited so long to see Were all gathered round, waiting there for me The reunion so blessed, filled with joy and sweet release Compared none at all, to when I met the Prince of Peace Oh I knew that it was my Jesus, as we stood there face to face Tears of joy began to fall, as He wrap
Julie Sando Teuber


There are many things in life that happen over which we have absolutely no control. Huntington's Disease is a very good example of that. None of us would ever choose this path which life has sprung on us. One of the lessons that I have learned in this life time is that a little bit of faith can go a long way. We all have faith in different things and to varing degrees. The opposite of faith is worrying about all the things that have or could go wrong. A certain amount of worry is a healthy t

My Friend, My Hero, My Lorna

This tribute to my best friend Lorna is way overdue. She is one of the kindest, most amazing people I have ever met. To know Lorna is to love Lorna; one just can not help it. I first met Lorna at the BC Lions Camp Squamish at a Huntington's camp years ago. We were instant friends and as we shared our hearts and souls with each other, we discovered we had matching baggage when it came to our past experiences. %TR% The fact Lorna also has HD gave us an amazing inner understanding of living wit


%TR% Huntington's families carry their own unique brand of stress. The inner relationships are complex and often heartbreaking on a scale that no one can truly imagine unless that have personally lived with it. There are a lot of sad family histories out there in the HD community. Within an HD family you also have an extra stress factor in worrying about your kids, parents, siblings and extended family members getting the disease. You tend to watch your family members very closely. There wa

Living Large

This June makes 4 years that I have been writing this journal/column of my HD journey. It does not seem possible that so much time has passed since I first put pen to paper for Kelly's Korner and set out to try to explain what it is like to live with HD. I started out writing to help other people understand but in the process I ended up gaining a vast knowledge about myself. It was important to me that people understand that HD is not an illness or a sickness but more a matter of learning to

Talking to Children

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. While I do not have children I am the proud Aunt of 17 children. Three nephews who are blood related but do not live near me. Seven who are my best friends children who also live far away from me. And then there are my two best frien

Asking for Help

Life is a struggle for many people. That is the tie that binds all of us together because we are all up against something. We all doubt our sanity at times. But the good news is that it is a fact that only sane people doubt their sanity, only insane people are certain of theirs. Asking for help is difficult for many of us. There is something in asking for help that makes us feel like we are failures for having to do so. We choose to continue to struggle rather than hurt our pride by reaching

A Caregiver's Self Talk

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. Tony does not deserve this. I do not deserve this. Our sons do not deserve this.” When a well meaning, but ignorant bystander learns of the death of a child who has lived a life of ment


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. The expected is what keeps us going. The unexpected is what changes our lives. Some people believe that the events that happen in our lives are pre-ordained. Others believe that things happen by chance and coincidence and

HD Testing - my story

When I was 9 years old, my dad was diagnosed with HD. He didn’t know it was in his family because as a young boy he had been sent to live with family members away from his siblings. No one ever told him. He married my mom, had three children and in his early 40’s was diagnosed. My sister (2 years younger than me) was diagnosed at age 23. At age 30, I decided to have a child. I had thought about it many times, the pros and cons, and decided that I didn’t want to, at age
Joan E.
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