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.

(www.wikipedia.com)

At the age of 28 I was diagnosed with Multiple Sclerosis.

Initially the doctors thought I might have had a minor stroke, as my symptoms were numbness on the left side of my face, extreme fatigue and vertigo. I had so many mixed emotions and thoughts. I felt scared, depressed and remember feeling as if the whole world was going on as normal, while my world came to a stand still, but it didn’t end. It was just a bit different, a new way of life for me. After the first year I finally came to terms with it, with the help of the MS Society, my family, friends and prayer.

I had my second relapse in January 2010 and thanks to GOD it wasn’t as bad as the first one. I was much better prepared the second time around as I knew what to expect and look out for this time. I live with MS every day of my life now and take my life day by day and with love, support, understanding and GOD I get through my days.

I am a wife and a mother of a 5-year-old beautiful little girl, Michelle. My biggest fear is my ability to care for my daughter if I become unable to do so physically and emotionally. The possibility that she may get MS as well has crossed my mind, but I now realize my daughter and I can overcome any challenges that come our way as long as we have faith in GOD and love and support from family and friends. I will make my child understand that MS is not a death sentence and that with a solid support system of faith, family and friends, we can get through any new journey together and come out even stronger on the other side. Like any parent I only wish for the best for my child. I would want to be an inspiration and a good example to her and to show her that giving up hope and faith for a cure for MS is never an option – coping with whatever challenges come your way is possible.

I have also come to realize that I am NOT ALONE in this “thing” called MS. And to know that, helps a lot! There are so many other people living with the illness that understand exactly how I feel because they go through it too. We might not experience the same symptoms, but at the end of the day we all have the same condition. We all need to enjoy and live our lives everyday as if it is our last, but so should everybody else, even people who are perfectly healthy.

I must say the one big thing that frustrates me the most, is the fact that MS is so unpredictable. Prayer has done a lot for me, my family and my condition over the years. I also know now that I myself have the power to try and make the best of any situation and the way I do it is with positive thinking and faith. I often share my feelings, thoughts and emotions with someone who understands and cares.

I have also learnt that I shouldn’t take a full functioning body and mind for granted.  This illness is not like a big wound that is visible to the naked eye, but Multiple Sclerosis is real and people who don’t have it do not seem to understand (or even attempt to understand it) and that bothers me a lot.

I get my up and down days. My down days mainly occur in warm conditions, because heat seems to be one of the biggest triggers of my specific symptoms – during relapses I get really weak and extremely fatigued. I just end up sleeping my whole day away at home and don’t feel like going out or doing much on those days. Another main cause that triggers my MS symptoms is stress, so I  avoid stressful situations where possible. Generally I try to remain calm and keep a positive attitude, be brave and try to build up courage to face and overcome my obstacles.

On my up days I like to smile, put makeup on my face, dress nicely and go out and see all my friends. On these days I feel great: just like someone who doesn’t have MS, and it’s days like these that make me feel so grateful towards GOD. I love my life just the way it is and I wouldn’t want it any other way, because this illness  has opened my eyes to a lot of things that I was not aware of and open to before. It has made me realize how lucky I am to be alive in more ways than one.

I like to count my blessings everyday and I will not let MS hold me back to enjoy and live my life – MS is not the end, it’s just the beginning of a different way of life!

(Melanie is a “Friend of MS” – if you live in Bedfordview, Boksburg, Edenvale or Kemptonpark, feel free to contact her via the national MS Helpline  0860 45 6772 .)

Download the relevant document below

English Census Document

Afrikaans Census Document

Complete the form and send it to inland@multiplesclerosis.co.za

This year we will be celebrating our second multiple sclerosis world day on 26 May. The National MSSA has decided to work around a theme in order to further highlight the plight of the MS community.
It is our intention to establish an accurate database of all People with MS in South Africa. At present there is no register for those newly diagnosed with the illness. Doctor/patient confidentiality prohibits this very important information reaching the MSSA. The society is thus dependant on first time contact from the newly diagnosed person in order to build up statistics.
Due to the nature of the illness, worldwide statistics are extremely important in a quest to find a cure for multiple sclerosis. South Africa in particular raises a good amount of interest due to our warm climate where according to statistics the illness should not thrive. And yet present figures show that we have approximately 5000 PwMS! Thus our information can be crucial for further research.
Our national helpline has been a great help in the past to gather information from our MS community, but the society is acutely aware that the statistics do not represent the broader community.
Through our census we are appealing to all PwMS, their families and friends to ensure that they are registered on the database in their province – Western Cape, KwaZulu Natal and the Inland Branch. Kindly call our national helpline on 0860 45 6772 for a census form (Afrikaans/English) per mail, e-mail or from our website www.multiplesclerosis.co.za Forms will also be available from your provincial branch.
South Africa is one of 46 other countries who has joined the MS International Federation in a full out bid to find a cure for a disease which strikes people in the prime of their lives. Please help us to gather information which will all be to the eventual benefit of MS people world wide.

(January 20th 09) 

Sometimes I get so weary
Of being …well just me …
Sometimes I get so teary
Because MS has a hold on me…

I know there are others
far worse off than me in many ways….
Sometimes though I have to fight these tears
Because I mourn the girl I used to be those days…

So many of you take for granted simple things
Like walking, running, having a zest for life…”I will never sink”…
Sometimes life though grabs your dreams and stifles them..
Forcing you to stop and take the time to think…

Everyday can be a challenge,
Everyday can be a celebration..
So please appreciate the simple things in life my friends
For in a matter of days, weeks it can turn into a difficult situation…

Forgive me as I battle my way
Through a minefield of emotions and physical trials…
Stay with me and never leave me behind..for I’m still the same girl
Even if it feels my wings have been clipped, for awhile…

Yes I mourn the loss, of the able person I used to be…
Yes now I must celebrate God’s gift in choosing me…
For in His wisdom He chose the few, to stand out and have a message.
Be strong inside, help others, and let your wonderful Spirit always be free…

River (Feb 20 2009)

Life is like a river, that which must flow…
Slowly or fastly, onwards we must go…
Along the way we pick up friends, and take them with for the ride,
Some we lose again, the others we hold them close inside.

We come from the mountains, and gather speed along the way,
Gurgling and laughing our strength grows every day.
We can only flow towards that, which we must go towards..
Ultimately ending up in the ocean of Spirit created by our Lord.

Take note of the scenery, as you float along so beautiful and free
Remember to give thanks for the path, being laid out for thee…
Trust the way forward, in all that you do
Knowing that God is waiting for you…

Wendy will be providing T-shirts for sale with MS slogans soon! Watch this space!!!

Recent reports have sparked a flurry of media attention and revived an old idea of an association between a possible disruption in venous drainage and MS.

A recent study by Zamboni et al, (published in J Neurology Neurosurgery Psychiatry. 2009 Apr; 80 (4): 392-9. Epub. 2008 Dec 5.) on 65 people with different types of MS compared with 235 people who were healthy or had other neurological disorders, found a robust correlation between having MS and signs of venous insufficiency – suggesting that drainage of oxygen depleted blood by veins may be impaired in the central nervous system, causing or contributing to nerve tissue damage.

The investigators called this condition “chronic cerebrospinal venous insufficiency” (CCSVI). The treatment status of the people with MS did not appear to influence whether they showed signs of CCSVI. Venous drainage of the brain and spinal cord was examined using an ultrasound technique (Doppler). The researchers also noted that patterns of venous obstruction differed between people at different stages and courses of MS although there was no clear relation between severity of MS and extent of occlusion. The authors suggest that the abnormal venous drainage of blood back from the brain and spine might set off the inflammation and immune-mediated damage that is characteristic of MS.

If these findings were confirmed and shown to have an impact on the disease process, they would open up new avenues of research into the underlying pathology of MS and raise the possibility of new treatments. While the early data is interesting, the proposed mechanism is highly speculative. The main limitations are that the study is done on a small number of people and on those who already have clinical MS. Therefore it is not possible to distinguish whether the venous obstructions are the cause of MS or are part of the physiological changes in the central nervous venous system that result from MS. The concepts surrounding CCSVI and MS are still relatively new and require validation in much larger, well-designed scientific studies before they can be accepted as established. Further research is now underway.

Researchers at Buffalo University, New York, USA, are recruiting 1,700 adults and children from USA and Canada to test a link between CCSVI and MS. The MS Society of Canada have issued a request for research operating grants on CCSVI in relation to MS.

Several of MSIF’s member societies have commented on the findings, including those in Canada, France, Germany, Ireland, Italy and Spain.

The most recent comment on the UK MS society’s website, includes criticism of some of the methodology of the study.

On 10 February 2010 researchers at the University at Buffalo investigating if people with MS show signs of narrowing of the veins, causing restricted blood flow from the brain said they were ‘cautiously optimistic’ following the release of preliminary results. This news story was featured by MS societies and the international media.

Q: Does CCSVI cause MS?
A: At this point there is not enough evidence to draw conclusions on CCSVI and MS. Based on what has been published to date, we can only say that in some people MS may occur in association with impaired venous drainage of the central nervous system. There is not enough evidence to determine whether obstruction of veins causes MS, or is caused by MS, or even to determine when this obstruction may occur in the course of disease.

Q: How has CCSVI been treated?
A: Surgical procedures for CCSVI in MS have used “balloons” to open up obstructed veins or inserted stents into veins to help keep them open. These procedures are still very experimental, have been performed on only a very small number of patients and involve risks of bleeding or the formation of abnormal blood clots. The safety and beneficial effects of this treatment can only be assessed by a large scale clinical trial.

Q: Will the treatment of CCSVI be useful for the various forms of MS?
A: As research on this question is at a very early stage, it is currently unknown whether this type of treatment will be useful in any form of MS. More clinical studies are needed before it will be considered for approval in treating people with MS.

Q: I have MS. Should I be tested for signs of CCSVI?
A: No, unless you are involved in a research study exploring this phenomenon, since at this time there is no proven therapy to resolve any abnormalities that might be observed, and it is still not clear whether relieving venous obstructions would be beneficial for the treatment of MS.
Source: MSIF, German MS Society, Italian MS Society, MS Ireland, MS Society of Canada, UK MS Society

http://www.msif.org/en/news/msif_news/update_chronic.html