For over 50 years Bonnie Hawkins of New Martinsville has been playing the organ or piano.
Her love of music and resulting service to the community and her church, First Baptist Church in New Martinsville, began when she was in high school. Elizabeth "Libby" Francis convinced her to play for the Magnolia High School chorus that was without a musician. Since that time the music has continued to flow. . . that is until mid-January.
It was then that Hawkins had to stop playing when she underwent surgery to remove some nodules in her lungs which doctors presumed cancerous. The good news was they weren't cancerous, but they feared tuberculosis and put her in isolation. It turns out it was mycobacterium avium complex, a non-contagious germ related to tuberculosis.
Bonnie Hawkins of New Martinsville is being honored by the Red Vest Golf Open XIV in Wisconsin Saturday. It is the major fund-raising event for ST Dystonia, the national group of which Hawkins is the president. The condition which, in Hawkins pulls her head down and to the side, reoccurred in her after 13 years of remission.
Of course that was more good news, but Hawkins said within four days of the surgery she knew something else was happening in her body. She was going out of remission for spasmodic torticollis (ST).
Only identified since about 1982, ST or cervical dystonia is a neurological condition thought to originate in the basal ganglia portion of the brain. A disturbance in the balance of chemicals produced in the brain may be responsible. One of these chemicals known as acetylcholine may be affected. The neurotransmitters or chemical messengers are secreted from the basal ganglia and travel through nerve pathways to certain muscles of the neck. The increased nerve signals cause spasms to occur which cause the head to be pulled. The various directions of the pulling are indicated in the type of ST.
For instance, in the 1990s Hawkins had rotational collis, or a pulling of the neck to the side. This recurrence is even worse for Hawkins as she has both rotational and antero collis, the pulling of the head downward. According to the ST Dystonia, the national group raising awareness and funds to research the condition, Hawkins' current combination is possibly one of the worst kinds of spasmodic torticollis a person can have.
"I cannot drive, do much handwriting, read, play the piano or organ at my church, walk very far, travel, talk on the telephone for very long, and eating is very difficult," said Hawkins who now has to wear a bib at mealtimes. She can, however, keep abreast of things via her iPad as it is easier to position where she can see it despite her head position. "My very active life has
changed to almost that of a hermit," she related.
But don't let all that make you think this condition has her beat. That is far from the truth. Her positive attitude never stops. That is undoubtedly why she is being honored at ST Dystonia's annual fund raiser-the Red Vest Golf Open XIV to be held Saturday at Rolling Hills Country Club in Oconomowoc, Wisc.
"I mean to tell you, that really got me," said Hawkins of the honor. "It was so special." Hawkins has been president of the national organization since 1999 or 2000. She writes a column for the national magazine four times per year.
An email about the honor sent out from the national organization said, "Many of you know or have talked with Bonnie Hawkins, the very selfless woman who has handled the phone calls on our ST Dystonia help line since 1994."
Noting she has probably talked to 14,000 people, Hawkins said the task has not been a burden, but rather a "real blessing." She tries to stay positive and pass that attitude and hope on to those who call the national help line for someone to lift them up, not commiserate.
Many people with ST can understandably exhibit anger and denial. But this can exacerbate symptoms which leads to more anger and anxiety. That can cause deeper symptoms and possibly other illnesses. "Acceptance of Spasmodic Torticollis is all-important," says the ST Dystonia website. "We know ST can be devastating, but with regular treatment and attention, you can lead a productive life!"
One of the primary treatments for ST is the injection of Botox. In the 1990s Hawkins took Botox treatments at the Ohio State University for five-and-a-half years. Her last injection was in December 1998, when they determined she was in remission.
"That's what's so hard to accept," said Hawkins of the gift that has been taken from her. It was a gift, because remission shouldn't have happened, she said. It was only by prayer, she believes, that she was able to live the past 13 years free of the condition.
This time around Hawkins has again sought some relief at the end of a needle with a Botox injection at West Virginia University. "It did absolutely nothing except give me neurological headaches," she reported of her first injection in April. But since that injection her doctor was at a conference in New Orleans when Dr. E. Wayne Massey of Duke University showed her where to give the next injection to hopefully bring some relief. "I will go ahead and do it one more time in July," said a hopeful Hawkins.
Unfortunately the numerous Botox injections over the years have also had, Hawkins believes, a negative effect on her body. About every five to six weeks Hawkins suffers from hypokalemia, a lower-than-normal amount of potassium in the blood. When that occurs, she must be hospitalized from 10-12 days to receive potassium and magnesium by IV.
Oh, but don't think that development leaves her depressed. "It's been a real ministry there too," said Hawkins. The 70-year-old usually ends up sharing a room with "the elderly" and can help them during their hospital stay as she is in generally good health other than being attached to an IV and affected by ST. "I think that's another one of my mission fields that God has provided," she noted of those frequent hospital stays.
Undoubtedly Hawkins also educates those roommates about ST during her hospital time. Promoting education and understanding of ST is very important to her.
After all, education does come naturally to this woman who taught fourth grade at New Martinsville School for 30 years. She actually taught for two years, from November 1993 to November 1995, with rotational collis. Her retirement was abrupt, not planned as many retirements are. Hawkins looked at her class of impressionable students in November 1995 and noticed that about half of them had their heads turned to one side. "I thought, 'If I'm doing this subconsciously to the children, I can't keep teaching.'" So she retired right then, determined to do what was right for the children.
Hawkins is hoping people can maybe be diagnosed by hearing her story. While the incidence rate is only 1.2 per 100,000 people, when those with the condition finally find their problems are not "in their head", they find some instant mental relief. Hawkins believes some people reading this story may be able to identify with her, recognizing that their inability to control their body's movement may be ST. "You never know when we might help someone else," said Hawkins.
Symptoms will generally settle on one side of the neck; a shoulder may be higher; pain, numbness, or tingling sensations may be felt in the arm or hand. "Mine started as a stiff neck in 1992," recalled Hawkins. If tremors are present, they will generally be in the head.
No one knows what causes ST. Heredity, at this time, occurs in no more than five to 10 percent of those surveyed. An accident or a trauma of some kind can trigger its onset. In approximately 50 percent of the ST population, there is a family history of hand or head tremors (familial or essential tremors). Hawkins said she cannot find any such history in her family.
Some in the medical field believe people with ST are born with a predisposition to the torticollis/dystonia gene and somewhere along life's path, it is triggered by the aforementioned causes. ST affects movement only and is not life threatening.
For more information visit www.spasmodictorticollis.org.
"I have often said that until a very famous person gets dystonia, there will be little research done. This is very sad," said Hawkins. "Since I have developed anterocollis and rotational collis, I do not understand why more people don't see the need to belong to ST Dystonia. No matter how well or poorly we are doing with our dystonia, we need each other. No other
organization offers the 'helps' that this organization does!"
Should you want to help Hawkins and ST Dystonia promote awareness and search for a cure, you can make a donation, no matter how small or large, by sending it to ST Dystonia, P.O. Box 28, Mukwonago, WI 53149.
"It will go a long way toward helping us continue to help people and to get the word out. . . and Bonnie would be thrilled and excited that her experience has led to a show of support for others with her condition," says ST Dystonia.