MAY – FEATURING NATIONAL HUNTINGTON’S DISEASE MONTH
Preliminary release of the article as it will appear in the "Senior Beacon" newspaper here in Grand Junction, CO.
“What’s Huntington’s disease”? were the first words from Dickie Martin’s lips when her sister-in-law in California called her in Grand Junction to tell Dickie her brother had just been diagnosed with Huntington’s Disease (HD). Her brother had an auto accident and a doctor in the hospital suspected HD because of involuntary movements of his whole body. The doctor told her sister-in-law that it is caused by a defective gene that children inherit from a parent who have/had HD, and he suggested that Dickie be tested. Her first thoughts were that she could not possibly have HD as neither of her parents had any of these movements. Her father lived until 78 and her mother died at 43 from cancer, although, “what if” her mother had passed away before she showed any symptoms? The most common age of onset of noticeable symptoms is ages 30s and 40s.
The defective gene causes the brain cells to gradually die, so HD persons gradually lose their minds and their bodies. Her brother had been acting “strangely” for several years with erratic behavior, explosive anger, loud and disruptive behavior in social situations--and then there were the physical things—the staggering with walking, constant twitching of hands, legs, body and face. Remembering too that she had been noticing twitching in her hands for about 3 years, was enough concern that she went to a neurologist in Grand Junction where she was diagnosed with HD. Dickie is now 70; she received the diagnosis at age 65.
This shocking diagnosis sent her to the HD support group which meets the last Tuesday of each month in the First Methodist Church at Fifth and White at 6:30 p.m. There she met others with HD, their families and friends and learned about HD and what services were available for her in Mesa County. Her biggest problem with HD has been her balance and falling. In one fall, she broke both wrists when she fell directly forward, landing on her wrists. With another fall she broke a shoulder. She can no longer drive, talking is becoming harder, memory is not as sharp, she now sometimes chokes as her throat muscles do not automatically function as previously, and a friend now lives with her for help in the home as she drops things. At this time, there is no cure for HD and there was no treatment until 2009 when one drug became available to some HD persons who have excessive movement to try to reduce these 24-hour-a day movements that leaves them exhausted. These HD persons also gradually lose weight no matter how much they eat as their bodies use hundreds of calories each day.
Two women in the HD support group, Marie Nemec (66) and Charlotte Reicks (74) , have become known in Grand Junction for their bicycle cross-country rides to raise funds for research and to help HD families financially. This year Marie and Charlotte will be making their 12th trip for HD, destination Raleigh, NC. They bicycle each year to the site of the National Convention--last year it was Phoenix. They have bicycled from Pacific to Atlantic twice when the convention was in Washington, DC and Orlando, FL. Other trips have taken them to San Diego, Oklahoma City, Houston, Columbus OH, Milwaukee, Atlanta, Pittsburgh, St. Louis and Phoenix for more than 18,000 miles pedaled. They are as surprised as everyone that they are still bicycling, giving all credit to “an awesome God who had a plan for us we never imagined in our wildest dreams--bicycling a ll over the US all these years, seeing God’s creation, meeting God’s people, and “given a gift of a way to help others--the biggest blessing of all.” When asked who sponsors them, they says “The Churches.” All denominations all over the US have taken them in overnight, supplying them with rest, food and prayers.
Check out their web site: www.bikeforthecure.org for their route, to read their daily message from the road, how you can donate, how to purchase a T-shirt, how to be a sponsor (T-shirts are designed each year by a graphics class at WCCC). A contact phone number is 250-5997 for more information.
Marie and Charlotte and the HD support group would love to see you all at a SEND-OFF BREAKFAST, Saturday, May 8, at Hawthorne Park at 4th and Gunnison from 9 a.m. to 11 a.m. Food and beverages are donated by Home Style Bakery and City Market, so COME HUNGRY!
