Parkinson’s Support Group to host state foundation director

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HURON — Longtime Huron teacher Dorothy Dubs has Parkinson’s disease. But as the former elementary Special Education instructor is quick to point out, “I have Parkinson’s, but Parkinson’s doesn’t have me.”
April is National Parkinson’s Disease Awareness Month and the local support group will host a special speaker at its monthly get together at 1:30 on Wednesday, at the HRMC Legacy Plaza Auditorium. HRMC provides the space and even supplies refreshments after the meeting.
“This month we have Janey Case, the executive director of the S.D. Parkinson’s Foundation coming to speak to the group,” said Amy Duxbury of the Huron office of Independent Living Choices (ILC). “There will be a large amount of information available and Janey will be able to answer any questions anyone would have regarding this disease.”
The Parkinson’s Support Group holds its meetings on the fourth Wednesday of each month, but both Dubs and Duxbury noted that outside of the small 6-8 person core group of attendees, new faces are a rarity.
Which is a major missed opportunity.
“There is just so much to be gained from talking about Parkinson’s,” Dubs said. “For others who have it, comparing notes on medication, exercise and more is beneficial because what works for one person may not work exactly the same for another. For caregivers, getting another perspective on how Parkinson’s affects others can give them insight into being prepared for changes. The meeting is entirely about information and learning about Parkinson’s. I find it difficult to believe that there are this small number of people in Huron who can benefit from this type of information.”
Duxbury is a living specialist for ILC, an organization that provides advocacy and peer support for a myriad of health and disability patients in the area, from helping with adaptive equipment to assisting with simple community living issues. The Parkinson’s Support Group falls squarely into the peer support portion of the ILC agenda.
“We would absolutely love it if we ran out of space to set up more chairs,” Duxbury said. “More and more people are touched by Parkinson’s and having more information from the start will be helpful.”
According to Parkinson.org, Parkinson’s disease (PD) is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra. Basically, dopamine is the conduit that ensures the electrical pulses are transferred along circuits in the brain and Parkinson’s is marked by a lessening of this vital substance.

Symptoms generally develop slowly over years. The progression of symptoms is often different from one person to another due to the diversity of the disease. People with PD may experience a variety of tremors, often first noticed in a patient’s hand, although other types of tremor are possible as well. PD sufferers also experience limb rigidity, as well as gait or balance problems.
Parkinson’s affects up to 1 million people in the U.S., and doctors diagnose as many as 60,000 new cases each year. Parkinson’s strikes 50 percent more men than women. The average age of onset is 60, although pre-teens have been diagnosed with Parkinson’s as well.
While men are more likely to have PD, they are in the minority at the peer group, a fact that Dubs attributes to men not wishing to appear susceptible.

How it started
It was through her familiarity with Parkinson’s that Dubs began to identify symptoms in herself.
“I knew people who had Parkinson’s, including some family members,” she said, quickly pointing out that there is no evidence of any genetic connection to the neurological disorder.
“I noticed a slight tremor in my hand,” Dubs said, “and also noticed that when I was walking, my left arm was not swinging naturally. Eventually I noticed that the symptoms were all on the left side of my body.”
On the direction from her physician, before she was even diagnosed with PD, Dubs went through a program with the acronym LSVT, which stands for Lee Silverman Voice Technique. LSVT is a relatively new therapy aimed at teaching the brain to reorganize itself by forming new connections.
“I was diagnosed in May of 2016,” Dubs said, after consulting her meticulous notes, “which was kind of a formality. I knew myself that I had it.”
Parkinson’s is not curable and medications and therapies are aimed at adapting to the changes. “There really isn’t anything that can be done to slow the disease,” Duxbury said. “That is why the peer support group is so very important. Every patient is different, how medications affect are different. People associate tremors with Parkinson’s, and that is true, but it is a very individualized disease. Sharing what works - or doesn’t work - with other patients and caregivers is vitally important.”
Duxbury credits Dubs with being a strong voice in the group. “Dorothy is a perfect example of someone who has knowledge, is willing to do the research and then is willing to share that information to help others.”
Dubs is quick to point out that she is not seeking sympathy for her diagnosis, and approaches each day with a ‘glass-is-half-full’ attitude. “My Parkinson’s is not associated with pain,” she says. “I have the normal aches and pains of someone my age, but Parkinson’s doesn’t add to it.” She credits remaining active to helping her cope.
“Staying active is key,” Dubs says. “It is vital.”
Both ladies will be there at Wednesday’s meeting and hope to see many others.
“Whether someone has the disease, is a caregiver or just wishes to be better informed, we are encouraging you to come,” Duxbury said.
“I come from an education background,” Dubs said, “and that approach works for Parkinson’s as well. You see a problem and work the steps to solve it. Parkinson’s isn’t curable, but there are solutions to the day-to-day problems. You just have to do the research.”