My journey with multiple sclerosis began 18 years ago at the age of thirty-seven. 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, Hilary and Jackie and also read the biography, by the same title, which was 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 are able to lead relatively normal lives and they have a normal life expectancy. I am thankful that, even after 18 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 a quarter of people with MS use a wheelchair.
Most of the twelve relapses I have had, have involved my spinal cord, as I have the type of MS which is similar to Devic’s Disease. This has affected my mobility to a significant extent. I now require a 4 wheel rollator (walker) in order to ambulate. The damage to my spinal cord has also resulted in bilateral foot drop. As a result of this I now need to drive an adapted vehicle as I no longer have control of the foot pedals. I had my car fitted with hand-controls on 27 August 2018. Thereafter I went for driving lessons facilitated through the QuadPara Association of South Africa (QASA). On 26 November 2018 I successfully passed my driving test as a disabled driver.
I have had 4 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, which plays an important role in spatial navigation and proprioception. As a result of this, I have geospatial issues and a tendency to straddle lanes when driving above a certain speed. Hence, I am unable to drive on the freeway.
My MS has also resulted in neurogenic bladder dysfunction. I have had numerous treatments for this, including bladder botox and surgery to implant a bladder pacemaker. None of these fancy and expensive treatments had any positive effects, however, and one of them resulted in systemic poisoning for which I required 3 days of hospitalization. I eventually had the pacemaker removed and now need to catheterize myself several times a day.
I try to lead as normal and healthy a life as possible. I see a physiotherapist once a week and a biokineticist twice a week. They are two of the most important people in my life, as they are the two people who are helping to postpone my confinement to a wheelchair. I was recently diagnosed with a second autoimmune disease, namely Hashimoto's Hypothyroidism, and have now started using Low Dose Naltrexone (LDN) under the guidance of a functional medicine practitioner. LDN is being prescribed for many autoimmune conditions.
Although MS cannot be cured, it can be controlled. Treatment for MS depends on the specific symptoms and difficulties the person has. It may include:
- Prescribing oral- or intravenous cortisone to treat MS relapses (flare-ups);
- Prescribing medications to treat MS symptoms, such as spasticity, pain, depression, urinary incontinence, etc.
- Prescribing medications to slow down the progression of the disease (i.e. disease-modifying therapies).
Some patients may opt for HSCT (Hematopoietic Stem Cell Transplantation). HSCT poses significant risks to the patient e.g. long-term infertility and organ damage. There is also an increased likelihood of developing cancer.
The most important insight I have gained from living with MS 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 in these calendars were done by disabled people (amputees, paraplegics or quadriplegics), who had learnt 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 are, hence, able to master Braille easier than a sighted person would be able to do.”
Here are some tips, which 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 to read is “Rise to the challenge of dealing with multiple sclerosis”. You will find it on the Health-Clicks website at https://tinyurl.com/yb8hwrnp. 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, and keeping cool, etc.
Consult a Tax Practitioner:
Consult a tax practitioner who will be able to apprise you of the tax rebates you are entitled to as a person with MS. He/she will also be able to enlighten you about modifications you can have done to your home or motor vehicle, without having to cover the costs yourself.
Stay well informed and read as much as you can. It will not only empower you; it will also inspire you!
A list of 13 very useful books can be found by Googling “13 Books That Shine a Light on MS”. The direct link is https://tinyurl.com/yaxpmo95. From personal stories to physician guidance, there’s a wealth of information here.