MAY – FEATURING NATIONAL HUNTINGTON’S DISEASE MONTH
Preliminary release of the article as it will appear in the "Grand Junction Free Press" newspaper here in Grand Junction, CO.
“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, 41 years old, 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. “I’m sorry, I am so sorry…” It was Tuesday, October 27, 2009 in the parlor of the United Methodist Church at 5th and White in Grand Junction where the Huntington’s Disease support group was gathered for their 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 had occasionally been coming to the support group for several years as a support for his sister Gen, age 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 his sister, Gen, it was different. “I always knew I had it.” “I was doing the same things my dad did,” even though she was not officially diagnosed until 10 or so years after she “knew it.” She never showed the typical first noticeable signs of movement—being off balance, falling, hands and legs flying erratically, facial movements. Hers were the more subtle changes in personality – anger outbursts, erratic behavior, mood changes, memory loss.
She had lots of jobs from clerk in stores, to aide at nursing homes. “I quit all of them.” “I would just walk out.” “I don’t know why.” Sometimes I couldn’t remember how to do things, sometimes I would get mad, sometimes I just didn’t want to.”
It took Gen several years to secure disability assistance, even though her doctor verified she had HD. Because she did not have the typical symptoms which could be seen, officials kept insisting she could work. They would give her mental tests which she failed. “They said I was lying and failed on purpose, but I wasn’t.” Jim was placed on disability within 1 month with the help of his employer.
For this brother and sister 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 HD. And you will also find them at every JUCO game no matter what the weather loudly cheering their favorite teams.
Marie Nemec and Charlotte Reicks were at the support group meeting that October evening 5 months ago. They had not determined whether they were going to bicycle cross country again for HD in 2010. After all, they are now 74 and 66 -- but now, there is Jim. Neither of them have HD in their families, but Marie became acquainted with some HD families in 1998, and recognized the financial need of the families and the need for finances for research. She hooked up with Charlotte through bicycling, and they determined the one thing they could do was ride their bicycles and thus the 1st HD ride from Pacific to Atlantic was born, which they thought was to be the first and last. However, with successful fund raising by that venture, they decided to go again, and now it has become -- “as long as we are physically able…because we have met hundreds like Jim and Gen across the US we want cured.”
So off they are again this year, destination Raleigh, NC – the destination is always to the National HD convention. The past 11 years have taken them from Pacific to Atlantic twice to Washington DC and Orlando, and to San Diego, Columbus OH, Houston, St. Louis, Atlanta, Milwaukee, Oklahoma City, Pittsburgh and Phoenix—more than 18,000 miles. You are invited to visit their web site for information about them, past rides, how you can follow the ride this year, a link for ordering a T-shirt (designed by a graphics class at WCCC), how you can donate: www.bikeforthecure.org
You are also invited to a “send off” breakfast SATURDAY, MAY 8, from 9 a.m. to 11 a.m. at Hawthorne Park, 4th & Gunnison. Come and meet the support group and COME HUNGRY because there will be a lot of food generously donated by Home Style Bakery and City Market.
