Coping with multiple sclerosis

COPING WITH MULTIPLE SCLEROSIS Multiple Sclerosis (MS) is an unpredictable, uninvited guest that arrives in your life and the lives of those around you.

It is there to stay.

When you are diagnosed with MS you might find yourself feeling overwhelmed, frightened, confused and distressed.

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ou may have heard the diagnosis, left the consulting room and returned to your normal daily life without giving it another thought until the next ‘real’ change in circumstances. You may have “shut down” emotionally. Or like many, you may have found you experienced a combination of all the above.

ER24 is urging people with MS who cannot cope to seek counselling, talk to a neurologist, an MS nurse or contact groups such as Multiple Sclerosis South Africa (MSSA). MSSA offers support to people with MS, their families and carers.

Non Smit, the director of MSSA Western Cape, said receiving a diagnosis of MS does not have to be negative.

“I know many people who find that the diagnosis provided an opportunity for change in their lives.

There are many stories of people changing their career paths, changing their lifestyles, getting fit and so on. Receiving the diagnosis can be a ‘turning point’ and can be a time where the future is re-evaluated in a proactive way.

“Ultimately, it is important to recognise that your reaction is a unique process. There is no right way to react and whatever your reaction, it is part of a normal process. It is important to remind yourself that you are the same person you have always been. MS may require you to make adjustments to how you approach different aspects of your life over time, but you are the same person after diagnosis as you were before,” she said.

Smit added that one way of understanding your initial reaction is to liken it to a roller coaster ride. At first there is a scary anticipation of the ride to follow, then once seated on the ride, the

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realisation there is no turning back. “The ride then begins and a significant number of emotions are experienced. There are highs and lows. And, like a roller coaster, some people are able to cope and others find it too frightening.

“I talk to people who have been newly diagnosed with MS about how it is like a grieving process.

Even though it is a very distressing and emotional experience, grief is nevertheless an important and healthy part of life,” said Smit.

She said that grief allows us to survive change. It can help you to find new and creative ways to deal with change.

“In MS, grieving can be seen as a tool that helps in re-evaluating life, revising your view of life and changing your life where needed, with the goal of adapting to any losses you might experience.

Grief can be a positive response to loss. While it might seem overwhelming to start with, healthy grieving enables you to let go of the past and grab hold of the future. Grief has been described as a gift, which has the power to heal. This may seem like a strangely positive description, but one leading psychologist (Elizabeth Kubler-Ross) said ‘it transforms the wounded, broken soul’.

It is a normal process that each human being experiences in life,” said Smit.

Being newly diagnosed does not have to be a scary time. There is help out there and people who have been where you are right now. “You will probably have many questions that no-one seems to be able to answer and are unsure where to go for help. Without having to commit to any membership, use the MS Society as an important port of call to provide you with information on valuable resources. You simply have to call the office and you will be pointed in the right direction.

If you still prefer to remain anonymous for a while without people interaction, make use of reputable websites. One good place to start is www. multiplesclerosis.co.za,” said Smit.

Types of MS • Relapsing remitting MS - Symptoms could occur for days, weeks or months before it improves partially or completely. “Relapses

happen when inflammatory cells attack nerve fibres in the brain and spinal cord. If inflammation blocks messages in an area that has a specific function, such as the optic nerve, then symptoms occur. The myelin sheath can be damaged and sometimes, the nerve fibre is also damaged. “When the inflammation subsides, symptoms settle down or disappear.

This is known as a remission. Remissions can last any length of time,” said Smit.

• Secondary progressive MS - When someone with relapsing remitting MS shows a sustained deterioration for at least six months, whether or not they have relapses, they are said to have secondary progressive MS. “Although myelin can repair itself, the nerve fibre cannot fully repair themselves. Some people continue to have relapses in addition to progressive deterioration. Although nobody’s MS starts off being secondary progressive, it is possible to be told you have this type of diagnosis if you have had unexplained symptoms for some time,” said Smit.

• Primary progressive MS - While the other types of MS can affect the brain and spinal cord, in primary progressive MS the majority of lesions tend to be found in the spinal cord. People with primary progressive MS never have distinct attacks or remissions but begin with subtle problems that slowly worsen over time.

Their MS is progressive from the beginning.

Problems tend to affect one main area.

Symptoms of MS MS is unpredictable. “As you get used to having MS, you will probably find there are certain triggers that make current symptoms worse or old symptoms reappear. Heat and exertion are common culprits. Once you identify what affects you, try to avoid these triggers where possible. Do not panic if external factors make your symptoms temporarily worse. This is not the same as a relapse,” said Smit.

Some common symptoms of MS include: • Numbness or tingling of the hands and feet.

• Visual problems such as blurred or double

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vision, or a temporary loss of sight in one eye caused by optic neuritis (inflammation of the optic nerve).

Fatigue.

Dizziness.

Pain.

Loss of muscle strength.

Problems with walking, balance and coordination.

Muscle stiffness and spasms

MS can be hard to diagnose and the process may take some time. “Doctors must make a ‘clinical

diagnosis’ based on your medical history and examination. A number of tests can be conducted.

“To diagnose MS, it must be demonstrated that attacks involve two or more areas of the central nervous system, on two or more occasions. The doctor must also rule out the chance you might have some other condition with similar symptoms,” said Smit.

Healthy diet Smit said in general, doctors believe people with MS benefit from a healthy diet. People with MS should eat low-fat foods, fruit and vegetables and intake of saturated fats should be kept to a minimum.

“Essential fatty acids do seem to play a part in helping to maintain a healthy nervous system. They are found in sunflower and soya oils, seeds, peas, beans and lentils, green leafy vegetables such as broccoli, while its polyunsaturated derivatives are in oily fish, such as tuna, mackerel and salmon.

Do regular gentle exercise. It will strengthen your bones and build your muscles, which can make relapses less disabling and help prevent long-term muscle wastage or postural problems,” said Smit.

ER24’s Emergency Contact Centre can be reached 24 hours a day on 084 124 for any medical emergency. §