“I wake up every morning with a purpose …”
Marlene van der Merwe navigates her walker in a very dignified way. She is dressed as if she were going to her office, yet she has been a stay-at-home mum for a number of years now.
This is the Marlene she wishes to remember and aspires to “live” up to every day. She held a managerial position in sales – an occupation she adored. “I could really sell ice in winter!”she proudly recalls. Her position as senior book keeper for an engineering firm is also fondly remembered. Marlene is a spunky go getter, it is obvious that this characteristic was the major element that would pull her through her difficult times.
In 1998 at age 41 Marlene started experiencing numbness and spasms in her legs. Soon after she was totally paralysed. The condition remained for 12 months. It proved to be a year of challenges for the whole family. “Everyone tried to keep it together the best they could for my sake” she remembers. The neurologist diagnosed multiple sclerosis but noted in later years that her condition bordered very close to Devic’s Disease. (See fact box)
Marlene was treated with Mitoxantrone (an immunosuppressive drug widely used for treatment of breast cancer and leukemia) and intravenous corticosteroids for as long as she could bear the medication. She gained some movement, but one morning woke up to total paralysis once again. A Krugersdorp physiotherapist, Derek Carter would play a major role in her recuperation. Derek asked Marlene to visualise herself walking again. She did so, but “I couldn’t walk quietly … I just had to HEAR myself walking!” Support from her family, her mom and her caregiver Celeste helped her regain her mobility. No words can adequately describe the hardship of the Van der Merwe family over this time.
Marlene returned to her previous employer only to find her position, although promised otherwise, was not available anymore. She thought this was God’s way: “I would not have been able to do for them what I used to – I had to accept I was not the person I used to be.” She resorted to doing odd accounting jobs on a free lance basis but eventually succumbed to a continuous calling to talk about her life, her hardship, this mysterious illness called multiple sclerosis.
“I wake up every morning with a purpose, whatever it is, to bake, gardening, listening to the radio or calling a fellow MS’er to find out how they are coping on that day.” And so the yearning grew. A passion to make others aware of MS, specifically in the West Rand area. She found the more she spoke, the more she heard. It seemed as if many people knew of other people or family members living with the illness. Marlene would draw on her own experience, telling others about her and her situation. Her small circle grew and her activities started drawing attention.
She quickly learnt that support could take on many faces: some people preferred making contact via telephone, others would drop in socially and still others would prefer to attend workshops or discussions on the many topics surrounding multiple sclerosis.
The MSSA was contacted and Marlene was helped to start up a basic support group in Krugersdorp and surrounds. She made it very clear that her mobility and fatigue would be a challenge: “but there is nothing wrong with my jaw and vocal chords!” and it is this gutsy and positive attitude that has made her a favourite motivational speaker in the area.
She has a full schedule planned for 2010 and will be hosting a lunch to celebrate MS World Day on 26 May 2010. Marlene will also be actively involved in the MS Census. The MSSA will be counting those with multiple sclerosis in South Africa to obtain a more accurate number of those living with the disease. The census will be closed off at the end of the year.
Devic’s disease (also known as Neuromyelitis Optica) is a rare, chronic, inflammatory and demyelinating disease of the central nervous system (CNS) which resembles MS in several ways.
Devic’s disease is characterised by attacks of acute optic neuritis (ON), usually in both eyes (bilateral). At the same time or within a few days, weeks or occasionally months, the ON is followed by severe transverse myelopathy (TM) – acute inflammation of the spinal cord.
Recovery from attacks of Devic’s disease is typically poorer than remissions from relapsing-remitting multiple sclerosis but the relapses are usually less frequent than is typical in MS.
The symptoms of Devic’s disease include marked loss of vision in both eyes (optic neuritis) followed by numbness, muscle weakness, spasticity, incoordination, ataxia, urinary, bowel, sexual and autonomic dysfunction in parts of the trunk and limbs served by nerves exiting the spine below the spinal lesion.
Neurologists argue as to whether Devic’s syndrome is a completely different disease to MS or whether it is a variant of it. The most obvious difference between the two is that Devic’s typically attacks the optic nerve chiasma, optic tract, and spinal cord – usually bilaterally – whereas MS lesions can be anywhere in the CNS white matter albeit with a preference for the optic nerve, brainstem, corpus callosum and periventricular regions.
There is currently no standard treatment for Devic’s syndrome. Generally, treatment is symptomatic and supportive. Treatment may include corticosteroids and intravenous methylprednisolone.
