Support group shines spotlight on MND

2015-06-10 06:00

JUNE is Global Motor Neuron Disease (MND) Awareness Month and a local support group is pulling out all the stops to assist patients and their families in coping with this debilitating illness that came into the spotlight after former Springbok Joost van der Westhuizen was diagnosed with it.

The Friends of the Motor Neuron Disease support group, which have a monthly meeting with a guest speaker every first Tuesday of the month at the Old Grey Club, received a cheque to the value of R???? from The Lions of Uitenhage during their last meeting on June 2.

The group, which is a non-profit organisation, was started by sister Gaynor Bishop, a registered nursing/midwifery practitioner and Mark Bradley of Bradley and Van der Merwe Chartered Accountants 3 years ago.

It not only serves those with Motor Neuron Disease (MND), but also those with any form of Progressive Neuro Muscular Disease (PNMD).

MND gives most people between 1 and 5 years to live. It attacks the motor nerve cells in the brain and spinal cord, causing them to die and thus the message to that muscle is unable to be delivered, resulting in muscle wasting, weakening, stiffening, loss of function and painful spasms.

Muscles affected are those of the upper and lower limbs, the face, speech, chewing and swallowing and breathing. Death occurs when the respiratory muscles finally fail. There is no cure for MND yet because the actual cause remains unknown.

Patient symptoms are treated symptomatically as they appear. “We have walked the journey with many people across the Eastern Cape and a few up to Knysna, witnessing many deaths and much heartache in familes. We could not sit back and do nothing for the desperate needs we saw in our region.

“Part of the motto in Palliative Care is ‘We want you to really live until you die, be symptom and pain free both physically, emotionally and spiritually’,” said Bishop.

At the support group’s informal and interactive meetings they have a different guest speaker monthly. The speakers cover a wide range of topics, not just medical but also alternative treatments and psychological management.

“We do all our own fundraising in order to purchase many items required for patients. We have also helped families who did not have food and medicines because of the loss of the breadwinner’s salary. We have also helped financially where we were able to assist. The equipment required is expensive, so we rely heavily on donations from the community in the form of cash and/or equipment no longer in use,” said Bishop.

The group has tremendous backing and support from some top businessmen in town. Among them are Mark Bradley of BVDM Chartered accounting who is the Chairman and Treasurer of Friends of MND, Alec Riddle, The Lions of Uitenhage and the Klinicare chain of pharmacies.

Kym Turner, Graphic Designer, has designed their website, while the Smile Foundation have a team of psychologists who donate their time at no cost to patients and families with MND and physiotherapist Fiona Mc Crindle travels to patients who are unable to get to physiotherapy. She reduces her rates to assist patients because of the heavy medical costs they face.

Reverend George Irvine is an integral part of their group and monthly meetings and gives support and counselling to patients.

For more info, contact Gaynor Bhishop on 079 591 2148 or email: friendsofmnd@gmail.com or Mark Bradley on 083 256 4564 or email: mark@bvdm.co.za

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