MULTIPLE System Atrophy (MSA) is an uncommon, neurodegenerative disorder affecting multiple body systems that most people are relatively unfamiliar with.
That is why March has been designated MSA awareness month in order to draw attention to the incurable illness that affects one in 400000 people.
For Deline Edwards of Mill Park, the month hits closer to home. Her sister-in-law, Dianne Vermaak, died of MSA two years ago at the age of 58.
Dianne was initially diagnosed with Parkinson’s Disease by her doctor after she started experiencing some loss of physical coordination. At the time, Deline joined the local Parkinson’s Disease Support Group in order to better understand and support Dianne.
“Her condition deteriorated quickly,” Edwards said.
Six years after she was diagnosed with Parkinson’s, Dianne went to see a neurologist in Cape Town. She was tested to see if she was a candidate for Deep Brain Stimulation surgery – a procedure which stimulates the brain in an attempt to relieve the symptoms.
It was then that she found out she had MSA.
“The doctor said there was nothing more he could do. She spent her final years with her husband Henry on a golf estate in Zambia where he was a mine manager,” Edwards said.
She added that in the last stages of Dianne’s life she was unable to walk or talk, but her mind remained sound.
According to the MSA Awareness website, the disease is not considered to be hereditary and generally affects middle-aged men and women, advancing rapidly with progressive loss of motor skills, eventual confinement to bed, and death. Deline has continued to serve as an active member of the Port Elizabeth Parkinson’s Disease Support Group, which brings together patients, their family members and friends, and care-givers. Some members are MSA sufferers.
The group meets at St John’s Anglican Church, Walmer, on the second Thursday of each month. Sometimes the meetings are addressed by medical experts. The group also organises social and recreational activities.
For more information contact Deline on 083-601-2173 or Briar Wright on 079-391-5527.
MAJOR symptoms, which can occur in any combination, include ataxia (loss of balance and coordination), severe low blood pressure leading to dizziness or fainting when standing, bladder retention or incontinence, constipation, male impotence, speech and swallowing difficulties, sleep disorders, breathing problems and rigidity and tremors similar to Parkinson’s Disease.
MSA can actually be considered as three disorders in one.
1. Sporadic cerebellar ataxia
2. Atypical Parkinsonism (Parkinson’s Plus)
3. Autonomic dysfunction (Dysautonomia)
In the past, these terms were used to describe what were once thought to be three separate disorders:
1. Sporadic olivopontocerebellar atrophy (OPCA)
2. Striatonigral degeneration (SND)
3. Shy-Drager Syndrome (SDS)
The currently recognised terminology includes only two types of MSA:
1. MSA-C when cerebellar symptoms are the first prominent symptoms.
2. MSA-P when Parkinson symptoms are the first prominent symptoms.
SYMPTOMS of MSA (taken from www.msaawareness.org):