Editor’s Note: This is the first of four profiles highlighting stories of local people with Parkinson’s disease, as part of Parkinson’s Awareness Month in April. Read the next profile on Daisy Davenport in next Sunday’s paper.
Uncontrollable movement in her little finger did not worry Kerry Howard at first. She just looked at it for a few seconds and went to bed.
A few months later, the shaking in the finger had become more constant and was occurring more frequently. It was at that point Howard knew she needed to get it checked out.
“I was sitting one night and my little finger started to twitch,” Howard said. “I thought it was weird, but it just kept getting worse. A year later I decided I needed to get medical advice.”
Howard, 63, has been living like 1 million other Americans — and 10 million people worldwide — with Parkinson’s disease for nearly three years. At first, Howard admitted, she had a tough time dealing with the diagnosis.
“I was devastated when I was told,” Howard said. “It is not in my family history and I have always taken really good care of myself. But, it can hit you at anytime. I really started feeling sorry for myself.”
Howard was diagnosed two years ago and said she has had symptoms for about three years. While Howard says she has had her down moments, she always thinks of her father when she starts to feel sad about the disease.
“My dad told me ‘never give up’ and ‘don’t let anything steal your joy,’” Howard said.
And if you speak to Howard for even a few minutes, you soon realize she has taken her father’s advice. Her enthusiasm is contagious and her energy would make anyone feel like they may need more coffee.
“You just have to try to do what you always do,” Howard said. “That is what I keep doing.”
A big part of always doing what she always has done, is staying active. Howard is one of nearly a dozen who take part in Pavitt Health and Fitness’ Rock Steady Boxing program. Howard said she enjoys the workouts at the program and the encouragement from the trainers and the other Parkinson’s patients in the group.
Rock Steady Boxing is a nationwide boxing-inspired workout session for people diagnosed with Parkinson’s. While no actually sparring takes place, the workouts focus around the keys to boxing — strength, flexibility and balance.
One of the coaches of the program, Janet Valentour, said sometimes when people first attend, they simply observe. Once they see how the program actually works, they tend to return for the class.
“I think people are intimidated at first,” Valentour said. “They think they have to hit something, but they don’t.”
Valentour said the class also acts as a social outlet.
“I think people also come for social support,” she said. “They feel accepted because they share the same disease and symptoms.”
During a recent boxing class, Marisha Bourgeois, a speech-language pathologist at Bartlett Regional Hospital, and Rachelle Cummins, an occupational therapist at Bartlett Regional Hospital, explained two of the key exercises in helping people with Parkinson’s — the Lee Silverman Voice Treatment (LSVT) BIG and LOUD programs.
The LSVT BIG program is based around large movements conducted by a physical or occupational therapist. It starts with basics like walking and then moves on toward balance and getting in and out of a car. Cummins said the biggest challenge with BIG is the first week and improvements can be seen in as soon as three weeks.
Marisha Bourgeois talks about LSVTlisten
The LSVT LOUD program is based on voice clearness and trying to obtain as close to 100 percent intelligible speech as possible. One of the aspects of teaching people with Parkinson’s is to speak loudly and attempt to enunciate, Bourgeois said. The speech-language pathologist will work with basic terms and then move on to custom terms based on the patient.
Both programs, Bourgeois and Cummins agreed, should be done during the early stages of Parkinson’s. The problem is that many Parkinson’s patients, they said, tend to wait until it is too late for improvements in both physical and vocal therapy.
“People sometimes don’t rush to the doctor,” Bourgeois said. “If they wait until the end stages of Parkinson’s often times (the patient) is not even a candidate.”
Howard is a good example of someone who decided to be proactive about her Parkinson’s and her workout from going to “Rock Steady” is paying off.
“I go all three times a week,” Howard said. “I am getting stronger. I think I have pretty good biceps.”
Howard is also well known as photographer around Juneau. She takes photographs of domestic animals at the Gastineau Humane Society and wildlife around Juneau. Howard submits photos to the Empire each week and is the fashion photographer for “Juneau Style” in Sunday’s Neighbors section.
Howard said she is happy her camera has a stabilizer on it. She said Parkinson’s actually has not had that much of an impact.
“Sometimes I have to brace my camera a certain way,” Howard said. “It is a minor inconvenience, but just something I have to work around.”
Howard still deals with what anyone would picture when someone has Parkinson’s. She will have fits of shaking and can lose her balance. But, she just keeps pushing — which she believes helps.
“Sometimes reality happens and I will start shaking and get a little wobbly,” Howard said. “That is why I just keep doing everything I have always done.”
And she keeps adding to it.
“I do anything I can to advocate for Parkinson’s awareness,” she said.
Recently, Howard went to Washington D.C. for the Parkinson’s Foundation and Michael J. Fox Foundation Parkinson’s Policy Forum. The three-day forum includes informational meetings, physical and vocal exercise classes and congressional meetings at Capitol Hill. Howard and a group from Anchorage were able to speak directly with U.S. Sens. Lisa Murkowski and Dan Sullivan, R-Alaska, and staff from Rep. Don Young’s office.
“We were able to speak them about various appropriations on brain diseases and they indicated they were very supportive,” Howard said. “It was a good way to connect with people all around the nation and bring that information back here to Juneau.”
• Contact reporter Gregory Philson at gphilson@juneauempire.com or call at 523-2265. Follow him on Twitter at @GTPhilson.
