How I cope with my husband’s MS

The heels of Tamina’s shoes clack on the floor as she hastens down the halls of the Milpark Hospital.

Her husband, Zarish, is finally out of intensive care and she is spending visiting hours with him, basking in the hospital gardens.

It has been seven weeks since he enjoyed a day outside. She’s thrilled that he gets to relish the warm spring sun and skies in his wheelchair.

This year alone, Zarish, 47, has been in and out of hospital six times, each time for several weeks.

Zarish has multiple sclerosis, (which means “multiple scars”), a degenerative condition that affects the central nervous system including the brain, the spinal cord and the optic nerve.

The disease damages the myelin sheath, an insulating material that surrounds and protects the nerve cells, causing scar tissue referred to as lesions or plaques.

Because nerve signals travel along the myelin, damage to it interferes with the communication between the brain and the rest of the body. This affects the co-ordination, feeling and movement of the body, depending on the site of the lesion.

Zarish was only 22 when he was told he had MS. As a medical intern at the then Johannesburg General Hospital, he knew something was wrong when he started to lose his balance. His hands became weak and he had double vision.

Zarish went for an MRI scan and the test came back positive: he had multiple lesions on his brain.

A neurologist informed him that his clinical picture showed that he had Relapsing Remitting Multiple Sclerosis. This is the most common form of MS and it’s aptly named because of the periods when it flares up and the periods of remission.

There is no cure for MS. The exact cause of the disease remains unknown. Researchers generally believe MS to be an autoimmune disease, where the body’s own immune system attacks its own tissues.

Medical experts theorise that elements such as genetics, childhood infections, geographic location and environmental factors may also play a role.

However, there are some treatments available that focus on treating symptoms, attacks and modifying the course of the disease.

Lorna Wridgway, a social worker at the Multiple Sclerosis South Africa inland branch, explains that the most commonly used treatments are corticosteroids and disease modifying treatments such as Interferon-beta (1a and 1b) and Glatiramer acetate.

Some people with MS, she adds, also use complementary therapies such as yoga or meditation. However, it’s important for people with MS to consult their doctor about any form of treatment they follow, she advises.

A 2008 epidemiological study published in the SA Medical Journal estimated that there were 5 000 people living with MS in South Africa.

Women are more likely to be living with MS, with a female-to-male ratio of about 3:1. And in two-thirds of the patients, the age of onset of MS is between 20 and 40

Despite Zarish’s diagnosis, he qualified as a GP and successfully ran a medical practice. He enjoyed playing sport and even managed to backpack through Europe. He married Tamina, also a doctor, and they had four children.

Zarish also acted as his family’s financial adviser. He was impulsive and had a playful nature. His father called him his “livewire”.

But over the years, Zarish’s illness worsened. Tamina took over his practice because his hands shook. Every now and then, he lost his sight. He could barely walk.

He struggled to talk, much less animatedly argue on issues that mattered to him. He was also unable to make decisions.

He was often in pain and had problems sleeping. There were several times when Tamina got up at night to look for him, only to find him slumped on the floor. He didn’t have the strength to make it back to their bedroom. She’d carry him on her back and tuck him into bed.

He couldn’t drive. He couldn’t pick up the children or kick the ball around with them. He’d also become uncharacteristically clumsy.

“He gave up fatherhood, being a husband, and the work he loved,” she says.

“Once upon a time he was full of life. He was a strong man who believed in the motto carpe diem (“seize the day”). Now he can’t even walk a few metres.

“In a way, he has lost everything. I feel sad that a man who had so much is reduced to this.”

In the last five years, his condition has become chronic, says Tamina. “He’s often ill now, particularly in the past two years.

“He was in hospital lately because the nerve in his throat had become paralysed. “His MS was causing him to swallow his food into his lungs, causing his current pneumonia.”

A tracheostomy, a surgical opening through the neck into the trachea to relieve difficulty in breathing, had to be performed.

His treatment now involves palliative care as the Interferon injection – medication used to slow down the progression of MS, which he received every second day – is no longer working.

MS is a bizarre disease, Tamina says. “It gives you hope and then lets you fall. It toys with your emotions. There is that constant swinging. He can be fine now and then sick tomorrow. His faculties can be here now, and then tomorrow, not.

“When he’s ill, I have to make the decisions. But when he’s not ill, he takes over. It’s difficult with the chopping and changing.

“The worst is, we don’t know. We’re living in complete darkness.”

The biggest challenge as a family, says Tamina, is that in the last decade they have not been able to make plans. Sometimes, at the last minute, holiday plans have had to be cancelled because Zarish has been too ill to travel.

“But somehow you do have to make those plans, so book that holiday if you can. God willing, if it happens and you’re able to go, then it’s good,” she says.

Tamina has spoken to her children about their father’s MS. They ask why their father is afflicted by this disease. “I bring our religion into it.”

Tamina misses his input on their children’s lives and says her daughter, in particular, needs her father’s guidance.

But unlike her children, Tamina has never questioned why the disease struck. Her faith in Islam and family support has made her stronger. “God is not going to give you a situation that you cannot handle,” she says.

She does worry about the future, though. “I ask myself that when the eventuality of his death comes, how will I go on? I think of the worst outcomes to prepare myself.”

She has talked about his death to the children. It’s hardest for the youngest to understand. “He’s the most sensitive about his father,” says Tamina.

But Zarish thinks it’s important to talk about death. “I call him my beautiful mind. To me he is like that line in the song about Vincent Van Gogh: ‘This world was never meant for one as beautiful as you.’ “

Most nights she is exhausted from taking care of their medical practice, their property investment, their home, their children and Zarish. “Occasionally I’ll feel sorry for myself and have a good cry. Then I’ll get on with it.

“Look, it hasn’t been easy. I’m a realist. My life has had its highs and lows. It’s been both agony and ecstasy,” she says. “I do go through moments of depression, times when I can’t sleep and have to take anxiety tablets. I don’t think I’m strong… food makes me happy.”

Zarish has become her inspiration and he has encouraged her to believe in herself. He has moulded her life and given her strength.

“He deals with what life gives him. My husband is an eternal optimist despite what he goes through,” she says with a smile.

“He loves to say: ‘I will fight the fight, and I will walk the talk.’ And to me, he always says: ‘Keep the flag flying.’ “

MS has deepened their marriage. “It’s not like other relationships. We have a type of relationship where we’re bonded. He’s my best friend, we share everything,” says Tamina.

“I remember on one of our anniversaries we wrote and said five things that we liked about one another. Now there is none of that because he is ill.

“Yet he is still so sweet. I do miss the couple intimacy. I think he does too. But now I look into his eyes and I tell him that I love him. He is still a man in my eyes.”

As a social worker who deals with patients with MS and their families, Wridgway says it’s possible to manage MS and to live positively with it. She says it may require lifestyle adjustments and it takes time to come to terms with the condition.

Wridgway shares her tips:

“Don’t panic.

“Take MS one step at a time.

“Don’t dwell on things you think may happen – they may not.

“Be informed. Educate yourself about MS. Use reliable sources of information. Not everything you read is necessarily true. Educate others about MS if necessary.

“Surround yourself with personal and professional support.

“Offer encouragement and be empathetic towards your partner with MS. Be accepting and allow your partner to express how he or she feels. Reassure your partner that you are there to support him or her.”

Tamina also offers her advice to other spouses whose partners are afflicted with MS.

She says you need to know your purpose and that you are able to go on. Tamina says some people will leave their spouses. “It almost becomes an unbearable burden for them and their lifelong dreams are shattered.”

But if you imagine the situation as a nurturing, loving parent looking after a child with MS, then apply this same principle to your husband and you will survive well, she says.

It’s very important to have the support of your family, she adds.

Have they said goodbye to one another? “I think so. We’ve said what we have to say to each other. If he died today, he knows what we mean to each other and what we’re about,” says Tamina.

“There are some things that we don’t have to say to one another. Saying ‘I love you’ is good enough. Just holding and kissing him is enough.”

* Zarish and Taminia did not want to be identified. The nicknames they’ve given each other have been used instead.

IN BRIEF

There are four types of MS, explains Lorna Wridgway of Multiple Sclerosis South Africa.

* Benign MS presents mild symptoms and very few relapses.

* Relapsing Remitting MS and Secondary Progressive MS manifest in a steady decline in neurological functions over time.

* Primary Progressive MS sees a gradual, irreversible decline in neurological functions from the onset without relapses or remissions.

A person with MS may experience one or a combination of symptoms. These include fatigue, muscle weakness, reduced mobility, visual disturbances, optic neuritis (inflammation of the optic nerve), spasms, dizziness, sensory disturbances such as numbness and tingling, difficulties with balance and co-ordination, and cognitive impairment.

Each person with MS has a unique set of symptoms. Not all patients lose their mobility and have cognitive problems.

Symptoms can occur unexpectedly, and may come and go at random. Symptoms also vary according to the stage of MS a person is in.

Because relapses are unpredictable, there’s little that can be done to reduce the number of attacks and their severity.

But it is believed that factors such as an increase in body temperature, hot climate, stress and viral infections such as flu or gastroenteritis can worsen symptoms or trigger the risk of a relapse. - The Star