Parkinson’s SA director brings smiles to Benoni support group faces
It is the only group of its kind on the East Rand and visitors come from near and far to share their experiences and seek advice and support from others living with Parkinson’s disease and their caregivers.
“It was a calling” is how the national director of the Parkinson’s Association of South Africa described how she became involved some 19 years ago.
Karin Willemse revealed this during her visit to the East Rand Parkinson’s Support Group in Benoni on October 25.
The group meets on the last Thursday of the month at 10am at Rynpark Six, 19 Parker Street, Rynfield.
Heather Smith (80), a resident of Rynpark, took the group over about five years ago by which time it had been running for three years.
“At that time there were only about nine people who attended. We are now a group of 40,” Heather said.
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Karin’s visit drew great interest and the meeting ran well over time as sufferers and caregivers alike peppered her with questions and sought her advice on various aspects of the disease.
She told the City Times it was purely a calling when she became involved with the Parkinson’s Association of SA.
“It was just a hobby really, but I soon took the association over and the rest is history, as they say,” Karin said.
Her commitment and passion have spanned nearly two decades and Karin is clearly an expert in her field.
No funds
Sadly, her passion isn’t going to keep the doors of the association open though, she told the audience at the meeting.
“We have no funding. The last funding we received was recently and it was only five per cent of what we applied for from the National Lotteries Commission,” she explained.
Karin is running the association from home and has worked voluntarily – without pay – for the past two years.
Despite this dire news, she assured the East Rand support group that she will always be involved and continue doing what she always has.
“I cannot see my life without the Parkinson’s Association.
“This Benoni group is my star group. They are always generous in donations to the association, which helps us tremendously,” Karin said.
After fielding various medication-related questions, Karin shared several tricks and tips with the audience.
“Parkinson’s is a disease which requires you to trick the brain to overcome certain obstacles,” she explained.
Lack of exercise is common among Parkinson’s sufferers and Karin reiterated the importance of regular exercise.
To open up the diaphragm and exercise mouth muscles, she gave those in the room affected by the disease a balloon each to blow up.
“It is simple things like this which can make a huge difference. If you don’t use it you’re going to lose it when it comes to your muscle strength,” said Karin.
Drunk
Education about Parkinson’s, Karin said, is very important.
“When out in public, patients are often accused of being drunk.
“This type of reaction and comments by the public who don’t know about Parkinson’s can cause a person who has the disease to withdraw from society and refuse to go out.
“Unfortunately, the reality is that when a patient feels others are watching them, the symptoms do tend to become worse.
“I believe any restrictions you place on yourself are in your own head. Get out there and continue to do the things you love. Keep active and keep busy, even if you have to force yourself,” Karin urged patients.
These are some of the interesting facts and tips Karin shared at the meeting:
• The first symptom of Parkinson’s is the loss of taste and smell.
• As sufferers can be prone to constipation, pumpkin seeds are an excellent remedy and source of fibre.
• Parkinson’s sufferers burn a lot of energy and, therefore, need extra nutrients. They should have at least five small meals a day.
• Many side effects are caused by medication. Karin offered several options patients can pursue if their medication is giving them negative side effects.
• Dribbling and a tartar build-up are common side effects of the disease. Exercising the mouth muscles, through blowing up a balloon, kicking a ball or chewing marshmallows, for example, assists greatly with this.
• Parkinson’s patients have excellent reflexes, but slow movement.
• A patient’s mind can be 100 per cent.
How to educate someone about Parkinson’s:
Karin suggests stating that Parkinson’s is a movement disorder caused by nerve cells (neurons) in the brain’s movement centres weakening and dying.
The TRAP explanation of symptoms is:
T – Tremor
R – Rigidity
A – Akinesia (the loss of ability to move your muscles voluntarily)
P – Postural Instability
For more information about the Parkinson’s Association of SA contact Karin on karin.willemse@icloud.com or contact her via their Facebook page: Parkinson’s Disease SA Support Forum
For more information about the East Rand support group contact Heather on 011 849 8509.
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