My life with multiple sclerosis

This article was written and submitted to ROLLING INSPIRATION by Anne Moon

My journey with multiple sclerosis (MS) began 15 years ago when I was 37. At that stage, the only person I knew of who had suffered from this disease was Jacqueline du Pré, a legendary English cellist who died in 1987. She was afflicted with an extremely aggressive form of MS.

I had watched the 1998 tearjerker movie Hilary and Jackie and also read the biography, by the same title, written by her siblings Piers and Hilary du Pré. So, my frame of reference for MS was paralysis, blindness, and emotional instability or mental illness.

In reality, however, the majority of people with MS (pwMS) are able to lead relatively normal lives and have a normal life expectancy. I am thankful for that. Even after 15 years with MS, I am still in full-time employment as a librarian in the tertiary education sector.

MS sufferers often experience periods where the symptoms worsen for a time, then disappear again for a while. Many people living with MS remain able to walk unassisted, while a smaller number need the help of a mobility aid. Only one quarter of people with MS use a wheelchair. Most of the dozen or so of my MS relapses have involved my spinal cord, and this has affected my mobility to a significant extent. I now require a four-wheel rollator in order to walk.

I have had four attacks of MS-related optic neuritis and this has resulted in some permanent damage to my eyes. MS has also affected a part of my brain known as the hippocampus. This is a small organ that plays an important role in spatial navigation and proprioception. As a result, I have geospatial issues and consequently have a tendency to straddle lanes when driving above a certain speed. Hence, I am unable to drive on the freeway on my own. My MS has also resulted in neurogenic bladder dysfunction. I now need to catheterise myself several times a day.

Although MS cannot be cured, it can be controlled. Treatment depends on the specific symptoms and difficulties of each person and may include:

• Oral or intravenous cortisone to treat flare-ups;
• Medications to treat MS symptoms, such as spasticity, pain, depression and incontinence;
• Medications to slow the progression of the disease (i.e. disease-modifying therapies).

Some patients may opt for Hematopoietic Stem Cell Transplantation (HSCT). This poses significant risks, for example long-term infertility and organ damage. There is also an increased likelihood of developing cancer.

The most important insight I have gained is that it is not all gloom and doom. Yes, MS has taken a lot away from me, but it has also enriched my life to the extent where I now see it as a blessing. My late-mother used to buy calendars from the Mouth and Foot Painters Association. The illustrations were done by people with a disability of some sort (amputees, paraplegics or quadriplegics), who learned to paint with either their mouths or their feet.

I remember her saying to me, as a child: “When God allows something to be taken away from you, he blesses you with a gift, which you would otherwise not have had. Sometimes it is strength of spirit, sometimes it is a special talent or an extremely well developed alternative sense. For example, most blind people have a well-developed tactile sense and can thus master Braille easier than a sighted person would be able to do.”

Here are some tips that I would like to share with patients who are newly diagnosed with MS.

Find a support group

The Multiple Sclerosis Association of South Africa (MSSA) can be contacted telephonically or via their website, at http://www.multiplesclerosis.co.za.

Cultivate a healthy lifestyle for your all-round wellbeing

A useful article is “Rise to the challenge of dealing with multiple sclerosis”. You will find it on the Health-Clicks website. It was written with input from a Cape Town neurologist and the MSSA. It provides advice on aspects such as a healthy diet, staying fit, dealing with stress, keeping cool, etc.

Consult a tax specialist

Consult a tax practitioner who will be able to tell you about the tax rebates you are entitled to – and to give you advice on the modifications you can have done to your home or motor vehicle, without having to cover the costs yourself.

Read as much as you can – you will be inspired!

Google “13 Books That Shine a Light on MS”. From personal stories to physician guidance, there’s a wealth of information here.