HUNTINGTON'S DISEASE
I have to admit I don't have direct knowledge of the pain of knowing you are dying. I'm healthy. With the exception of knee problems caused by a birth defect, I'm very healthy.
I've had relatives die of cancer. My grandfather had cancer. My aunt Margaret died of cancer.. my aunt Mildred, my aunt Elsie. My uncle Harold has had cancer... several have died of liver disease.
When I was a teenager, there was a girl in our class that died in a car accident. Tina. That was hard, although she had dropped out of our private school and started going to public school the year she died.
HUNTINGTON'S DISEASE
Ever heard of it? I hadn't either until a few years ago when someone very dear to me had "the conversation" with me. It was two days after Thanksgiving when he told me...I'll never forget that day. (My nickname for him has always been "the little drummer boy," so I'll refer to him as that in this blog.) I remember, as he was telling me about this disease, thinking he was so strong. Truthfully I believe the reality of it all had not set in yet.
Huntington's is completely hereditary. If you have it, there's a 50/50 chance your children will have it. In "little drummer boy's" case, he had NOT been diagnosed BEFORE he had children.
Huntington's is completely fatal. If you have the gene, if you have the disease, you will die. And it's not a easy death. (Is death ever easy?) Huntington's disease produces three types of symptoms: movement, cognitive, and psychiatric. The sequence in which symptoms develop varies from person to person. Uncontrolled movement is a huge symptom; over time judgment, memory, and other cognitive functions begin to deteriorate into dementia. A person with Huntington's also may exhibit psychotic behavior.
"The little drummer boy" is very brave. He's continued to live his life with dignity. But I've seen the changes..they're happening already. And I pray.
I hadn't thought about Huntington's in a while, until an episode of "Private Practice" on ABC featured a character, a woman, who was in an emotional upheaval about the possibility of having the disease. I had no idea the anguish of even deciding to take the test. I have to wonder if one of the writers has a family member or friend going through the experience.
"The little drummer boy" was brave in deciding to take the test.. in making the decision to KNOW his future. He was brave in tackling the future head on and brave in deciding to tell some friends about what he was going to face.
What role do I play in this brave man's life? I don't know. I can't know. It's a long distance role.. and all I can do is pray... all I can be is strong and stable... and be here for that "little drummer boy" when he needs a place to land for a while...when he needs a place to rest.
I've had relatives die of cancer. My grandfather had cancer. My aunt Margaret died of cancer.. my aunt Mildred, my aunt Elsie. My uncle Harold has had cancer... several have died of liver disease.
When I was a teenager, there was a girl in our class that died in a car accident. Tina. That was hard, although she had dropped out of our private school and started going to public school the year she died.
HUNTINGTON'S DISEASE
Ever heard of it? I hadn't either until a few years ago when someone very dear to me had "the conversation" with me. It was two days after Thanksgiving when he told me...I'll never forget that day. (My nickname for him has always been "the little drummer boy," so I'll refer to him as that in this blog.) I remember, as he was telling me about this disease, thinking he was so strong. Truthfully I believe the reality of it all had not set in yet.
Huntington's is completely hereditary. If you have it, there's a 50/50 chance your children will have it. In "little drummer boy's" case, he had NOT been diagnosed BEFORE he had children.
Huntington's is completely fatal. If you have the gene, if you have the disease, you will die. And it's not a easy death. (Is death ever easy?) Huntington's disease produces three types of symptoms: movement, cognitive, and psychiatric. The sequence in which symptoms develop varies from person to person. Uncontrolled movement is a huge symptom; over time judgment, memory, and other cognitive functions begin to deteriorate into dementia. A person with Huntington's also may exhibit psychotic behavior.
"The little drummer boy" is very brave. He's continued to live his life with dignity. But I've seen the changes..they're happening already. And I pray.
I hadn't thought about Huntington's in a while, until an episode of "Private Practice" on ABC featured a character, a woman, who was in an emotional upheaval about the possibility of having the disease. I had no idea the anguish of even deciding to take the test. I have to wonder if one of the writers has a family member or friend going through the experience.
"The little drummer boy" was brave in deciding to take the test.. in making the decision to KNOW his future. He was brave in tackling the future head on and brave in deciding to tell some friends about what he was going to face.
What role do I play in this brave man's life? I don't know. I can't know. It's a long distance role.. and all I can do is pray... all I can be is strong and stable... and be here for that "little drummer boy" when he needs a place to land for a while...when he needs a place to rest.
posted by Pamela Furr at
8:17 AM
1 Comments:
Pam, thank you for sharing that story and I know how you are feeling. I have also watched a loved one suffer from a fatal disease. I always felt guilty for some reason, not that it was my fault they were ill, but I always felt guilty when I was out doing things they could not. I could never let it go. Anway, i enjoyed reading your blog. (see, you have plenty to talk about other than sam!) God speed snd good luck.
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