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“I didn't think I had it.” With eyes filled with tears, these words came tumbling out in a low shaky voice from Jim, a big man of 41, as he sat clutching his mother's hand. There was a moment of stunned silence with tears welling up as the group in the room adjusted to this heartbreaking news.
It was Tuesday, Oct. 27, 2009 in the parlor of the United Methodist Church at Fifth and White in Grand Junction where the Huntington's Disease support group was gathered for its monthly meeting. Jim had been positively diagnosed with HD by a blood test.
For Jim, and others who have grown up with HD, he knew what that meant. His dad had it and he spent all his life watching his dad go from a strong vibrant man to a wheelchair, not being able to speak or swallow, with slow gradual deterioration physically and mentally over many years. There is no cure.
A defective gene may or may not be inherited at conception from the parent even though symptoms may not appear for many years — the most common age is 30s and 40s, although symptoms can start in childhood or not appear until older. The defective gene causes the brain cells to gradually die causing slow gradual loss of physical abilities and also mental abilities with loss of cognition and changes in personality.
Right now for Jim, facing what is ahead is still terrifying and depressing, but he is adjusting and trying to be positive. The hardest part is not being at work with his friends. He had to resign from a job he loved. His sympathetic employer tried hard to keep him, giving leave time with pay for him to “get well” - with Jim insisting the mistakes with billing were from a cold and “fuzzy head” and his walking “weavy” was from his back pain from lifting the heavy oxygen containers. At the insistence of his employer, he went to the doctor who told him he had HD, which Jim was sure was not true — until the blood test said otherwise.
“It was a huge shock,” Jim said.
Jim had occasionally been coming to the support group for several years as a support for his sister, Gen, 43, who has HD, and for his mother. (Both children in this family inherited the defective gene.) Being at the meeting as an HD person rather than a support is a giant change emotionally for him.
For Jim and Gen, Mesa State is the greatest plus in their lives — they attend every game of every sport. They are probably the “rowdiest” fans of Mesa, while not really intending to be. One part of the mental deterioration of HD is losing the ability to always act “normally” in social situations. People around them may see them as “obnoxious,” loud, rude, and with their unsteady gait, sporadic muscle movements, and slurred speech, they might be looked upon as being high on drugs or alcohol. It is the disease. And you will also find them at every JUCO game no matter what the weather loudly cheering their favorite teams.
For the last 11 years, Marie Nemec and I have rode our bicycles from the Pacific coast to the Atlantic in support of and to raise money for Huntington's Disease. Although Marie is 77 and I am 66, we'll continue to ride as long as we are physically able, because we have met hundreds like Jim and Gen across the U.S. who we want cured.
So off we are again this year, destination Raleigh, N.C. - the destination is always to the National HD convention. During the past 11 years, we've logged more than 18,000 miles. For more information or how to help our cause, visit www.bikeforthecure.org. The public is invited to a “send-off” breakfast Saturday, May 8, 9 to 11 a.m. at Hawthorne Park, located at Fourth and Gunnison. Meet the HD support group and come hungry because there will be a lot of food generously donated by Home Style Bakery and City Market.
Charlotte Reicks has a Master's of Art in education. She taught for 25 years in Michigan, at Grand Junction High School and Mesa College, followed by a stint as a legal secretary. She now has a medical transcription business. Her first cross-country bicycling trip was in 1992 from Utah to Kansas. Every year following that, she has cycled for a charity. Her longest ride was 8,400 miles around the US for the American Bible Society.
It was Tuesday, Oct. 27, 2009 in the parlor of the United Methodist Church at Fifth and White in Grand Junction where the Huntington's Disease support group was gathered for its monthly meeting. Jim had been positively diagnosed with HD by a blood test.
For Jim, and others who have grown up with HD, he knew what that meant. His dad had it and he spent all his life watching his dad go from a strong vibrant man to a wheelchair, not being able to speak or swallow, with slow gradual deterioration physically and mentally over many years. There is no cure.
A defective gene may or may not be inherited at conception from the parent even though symptoms may not appear for many years — the most common age is 30s and 40s, although symptoms can start in childhood or not appear until older. The defective gene causes the brain cells to gradually die causing slow gradual loss of physical abilities and also mental abilities with loss of cognition and changes in personality.
Right now for Jim, facing what is ahead is still terrifying and depressing, but he is adjusting and trying to be positive. The hardest part is not being at work with his friends. He had to resign from a job he loved. His sympathetic employer tried hard to keep him, giving leave time with pay for him to “get well” - with Jim insisting the mistakes with billing were from a cold and “fuzzy head” and his walking “weavy” was from his back pain from lifting the heavy oxygen containers. At the insistence of his employer, he went to the doctor who told him he had HD, which Jim was sure was not true — until the blood test said otherwise.
“It was a huge shock,” Jim said.
Jim had occasionally been coming to the support group for several years as a support for his sister, Gen, 43, who has HD, and for his mother. (Both children in this family inherited the defective gene.) Being at the meeting as an HD person rather than a support is a giant change emotionally for him.
For Jim and Gen, Mesa State is the greatest plus in their lives — they attend every game of every sport. They are probably the “rowdiest” fans of Mesa, while not really intending to be. One part of the mental deterioration of HD is losing the ability to always act “normally” in social situations. People around them may see them as “obnoxious,” loud, rude, and with their unsteady gait, sporadic muscle movements, and slurred speech, they might be looked upon as being high on drugs or alcohol. It is the disease. And you will also find them at every JUCO game no matter what the weather loudly cheering their favorite teams.
For the last 11 years, Marie Nemec and I have rode our bicycles from the Pacific coast to the Atlantic in support of and to raise money for Huntington's Disease. Although Marie is 77 and I am 66, we'll continue to ride as long as we are physically able, because we have met hundreds like Jim and Gen across the U.S. who we want cured.
So off we are again this year, destination Raleigh, N.C. - the destination is always to the National HD convention. During the past 11 years, we've logged more than 18,000 miles. For more information or how to help our cause, visit www.bikeforthecure.org. The public is invited to a “send-off” breakfast Saturday, May 8, 9 to 11 a.m. at Hawthorne Park, located at Fourth and Gunnison. Meet the HD support group and come hungry because there will be a lot of food generously donated by Home Style Bakery and City Market.
Charlotte Reicks has a Master's of Art in education. She taught for 25 years in Michigan, at Grand Junction High School and Mesa College, followed by a stint as a legal secretary. She now has a medical transcription business. Her first cross-country bicycling trip was in 1992 from Utah to Kansas. Every year following that, she has cycled for a charity. Her longest ride was 8,400 miles around the US for the American Bible Society.
