June 2007

T h e N e w s l e t t e r o f t h e M o t o r N e u r o n e D i s e a s e A s s o c i a t i o n o f S o u t h A f r i c a June 2007
Alfred Mzawupeli Mali happily smiling at the Support Group at St Luke’s Hospice during his 2 week respite stay there The Mission Statement of the MND Assoc. of S.A. is
“To provide and promote the best possible support for people living with
Motor Neurone Disease, their families and carers and to raise public awareness.”
NATIONAL CHAIRPERSON
VICE CHAIRPERSON
TREASURER
SECRETARY
MNDA of South Africa is a member of the International Alliance
ACKNOWLEDGEMENTS
John Hall for producing the design and DTP (desk top publishing) work.
Logo Print (Maitland) for the printing of our magazine
FROM THE OFFICE
MNDA FORUM
In the previous issue of “Thumbs UP” we enclosed Woolworths Supporters Card Applications -
We are disappointed that so far we have not received the response we were hoping for.
We need 200 applications to start the ball rolling, so
Return your signed application forms to our postal address: PO Box 789, Howard Place 7450
Remember every little bit helps - and we need help to keep our Association functioning !!
Membership
Annual membership has fallen due and we enclose the forms for your convenience. To all of you who have already paid the new R75 annual subscription – many thanks ! (please then ignore this reminder) Our banking details !
Standard Bank Rondebosch Branch 025009 : Account No 27 062 913 0 Please ensure correct account title: Motor Neurone Disease Association OR MNDA of SA (Swift SBZAZAJJ 02500911 – for deposits from overseas) DONATIONS
Many thanks to:JS Rossouw, PM Snyman, The Vineyard Hotel (Staff), Mathias family, MC Hood, N Pringle, Paul & Aviva Sulcas, Norman van Zyl, Knowles family, MA Longbeach, G Price, B Odendaal, T Katzew, JW Bell, HJ Veraar, A May, MM Fricker,Hilda van Zyl, SP Saayman, Peter & Rosemary Thorburn, M McLellan, Amanda Booysen, Levitt & Aronoff family, Sue Lane,DY Scheepers, St Michael’s Church, M Wagenaar, Pamela Hobbs, WR Terry, RF Morris, Moira Essen, Rael Levitt, HA Wilson,S van Blerk, C Cabion, MG Norman, Janie Zaal, L Lemone-Ward, Kat Halpin, G Lord, JM Cope, EA Allright, D Serfontein, S Birkhead, R Els, Schewitz family, M Norman, J Gaiser, I Naik - for monthly contributions, donations made in memory of loved ones, or in lieu of gifts to friends and family on various occasions, or simply because …….!! The Reality of Living with MND
it was obvious that I hadn’t the fastest progressing disease and (By Jean Waters – taken from Thumbprint, Spring 2007) the intense emotions lessened. I am now two years down theline, walking with difficulty, weak arms necessitating retire- “Whatever is ahead of me, is best not to dwell on and in the ment, but still with purely LMN signs. Is there an upside to PMA? On reflection, I think there is. I am fortunate to have I have Progressive Muscular Atrophy. It’s a rare form of been given time, something so many people living with MND MND with purely lower motor neurone (LMN) signs. It don’t have and I am grateful. It has enabled me to forge rela- occurs in around 5-7% of all reported cases of MND. As it is tionships which under normal circumstances, would never five times more common in men than women it makes me one A friend with secondary breast cancer and I formed “the small It took nearly eighteen months before I was diagnosed with print survivors’ club” and met regularly, able to talk about MND, passing through the Orthopaedic Department before common concerns and anxieties and spin humour into our reaching the Neurologists. For a few months I lived with the predicament. Sadly, our little club is down to 50% of its orig- possibility of having Multifocal Motor Neurophathy, until the inal membership, but it was an experience I will never regret having and was so beneficial to us both.
The downside of the diagnosis of MND is self evident. The Enforced retirement led to new doors opening. I have liaised initial emotion was one of grief, inner turmoil and a complete with our local hospice and used my medical training to pro- sense of doom. After a few months when logic was restored, vide updates for the staff, including talking to them about MNDA FORUM
MND in all its forms. I have met other people living with MND, carers and professionals, forging new links, both local- Department and from 1985 became Director of the Human Resources Department until his retirement in 2000.
I can empathise with other disabled people in a way that I There is so much to say about Wynand and what he went could never have done without my first-hand experience. The through, but all I can say is this illness is difficult to come to support and practical help which I have received has been fan- terms with. Get help. Physically and mentally. These tastic and has come from some of the most unexpected patients need a lot of love and attention but you as carer does sources. Whatever is ahead of me, life is for living.
to. If anyone who has ALS would like to talk to me pleasefeel free to call me even if it is just for a chat. Remember, My family won’t allow me to wallow. As my son said on each patient is different. My number is 044-620 3221. I stay learning of my encroaching disability: “Never mind Mum, in Great Brak River (midway between George and Mossel just think, when you are in a wheelchair, we can set some blades beneath and it will save me mowing the lawn!” I will love and miss Wynand forever but I know he is wholeagain and playing “hop scotch” with the children in heaven.
Ingrid Herholdt from Great Brak River whose
With love and best wishes, Ingrid Herholdt.
husband Prof Wynand Herholdt, recently
passed away, writes:
I would like to express my appreciation to the MND
Shirley Levitt from Sea Point, who lost her hus-
Association for all the support and help you have given us. It band to MND in February, sent us this e-mail
was such a relief to hear there was a MND Association after recently:
Wynand was diagnosed with ALS. You were a great help and I would like to thank everyone at the Motor Neuron offices, a special thanks for all your visits, support and encouragement and in particular Vivien O’Cuinneagain, who went out of her and always being there when I needed advice.
way to be always on hand when needed, and contacted useven on Sundays and if necessary after hours, and always ren- Wynand was diagnosed with ALS (Motor Neurone Disease) dered exceptional assistance and help to me, my late husband on October 5, 2001. His illness started in his one foot and gradually paralysed him until he was completely paralysed With grateful thanks, Shirley Levitt.
after 2 years. He could still speak and swallow up to the end.
He believed that as long as he could still speak, he had work Francois Serfontein van Oudtshoorn, stuur
hierdie briefie saam met sy geldelike bydrae:
My woorde is min maar my dankbaarheid groot teenoor julle
Five years and five months later, on 1 April 2007 Wynand vir al die goeie werk wat julle doen. Nogmaals baie dankie died in my arms at the age of 66, two weeks before his birth- vir alles en baie groete aan suster Vivien.
day. It was an honour and a privilege to be his wife and to beable to care for him. We loved and cared for each other. We Magre van Deventer, pasiënt van Uitenhage
were happy like children. We held hands and it was important deel met ons:
to us to share everything. Sometimes words were of little Waarom gebeur slegte dinge met goeie mense? importance at coming to terms with reality. Being together Ek het toe die goeie verwag, maar rampe het my getref, ek het was more important than anything else. There were times that uitgesien na die lig, maar donker het my oorval. (Job 30:26).
emotions and frustrations took over but God took care of that.
Lyding bring die beste in ons tevoorskyn. Paulus roem daarop He made us strong and we had to come to terms with this ill- dat, as hy swak is, hy dan sterk is. Liefde, geduld, medelye ness and we did. We also have a lot of loving and caring peo- en deernis word dikwels uit lyding gebore.
ple around us who visited Wynand on a regular basis. He ….And believes in the following quotes:
enjoyed having people around him. He was never depressed - Once you choose hope, anything’s possible.
- The best way to cheer yourself up is to try to cheer some- Wynand believed he had 4 angels: his wife Ingrid, his nurse - Never let your head hang down. Never give up and sit Helena, Spaas Floors who helped us in the house and his unknown angel who was always around us. He loved to do Bible study in the mornings and was always looking forward - Hope does not take away your problems. It can lift you to do the Afrikaans cryptic crossword. Wynand was a remark- able and respected man. He was a professor at the University - There are only two ways to live your life. One is as though of Pretoria until his retirement in 2000. He was head of the MNDA FORUM
The other is as though everything is a miracle.
- I believe in the sun even when it is not shining.
(iii) Keep learning. Learn more about the computer, crafts, - I believe in love even when feeling it not.
- I believe in God even when he is silent.
Never let the brain idle. “An idle mind is the devil’s work- - Prayer is the opening of the soul to God so that he can speak shop and the devil’s name is Alzheimer’s - The difference between the impossible and the possible lies (v) Laugh often, long and loud. Laugh until you gasp for in a person’s Determination
To continue believing in yourself, believing in the doctors, (vi) The tears happen. Endure, grieve, and move on. The believing in the treatment, believing in whatever I chose to only person who is with us our entire life, is ourselves.
believe in, that was the most important thing, I decided. It had (vii) Surround yourself with what you love, whether it’s fam- ily, pets, keepsakes, music, plants, hobbies, whatever.
A little girl (aged 4) was with her mother when they met an elderly, rather wrinkled woman her mom knew. (viii) Cherish your health: If it is good, preserve it. It if is The little girl looked at her for a while and asked “why doesn’t your skin fit your face ?” If it is beyond what you can improve, get help How to stay young …
(x) Tell the people you love that you love them, at every (Taken from Publiser’s Desk of Village Ads – May 2007) (i) Throw out nonessential numbers. This includes age, And REMEMBER,
Life is not measured by the number of breaths we take,
Let the doctors worry about them – That is why you pay But by the moments that take our breath away.
We all need to live life to it’s fullest each day !
(ii) Keep only cheerful friends. The grouches will pull you Patient June Long (of Mowbray, Cape) and her husband Des, gaining knowledge at a Support Group Meeting at St Luke’s MNDA FORUM
FOR CARERS
Carers’ Assessments
down with a good book, or relaxing in the bath. It’s about You have a legal right to an assessment of your own needs if what you enjoy. Be selfish for once – you deserve it! you are looking after someone who cannot manage withoutyour help. You also have a right to an assessment if you - Training
Looking after someone’s every need can pose new strains andstresses on the body. You may want to consider some of the following points: For instance learning the correct techniques for lifting and - Do you get enough sleep ? Is your health affected in other handling can be a really positive step and prevent injuries.
- Are you able to get out and about ? Do you get time for - Taking a Break
- Are your other relationships affected ? Often carers balk at the idea of taking a break away from the - Is the person you care for getting enough help ? person they care caring for, but the benefits can outweigh anyworries. Getting away can offer the opportunity to try new Also think about what might help you cope: things, see new areas and meet new people. It also gives you a talking point for when you return and share details of your - emotional support from other carers or people who under- experience. Breaks can be anything you like – maybe you’ve always wanted to visit a particular city, or try a course in watercolour painting. It doesn’t matter what it is, so long as - help with caring tasks during the day/night you get the opportunity for ‘time off’ to recharge your batteries.
- Holidays
Make sure the person you are caring for isn’t present when the Some carers think a ‘proper’ holiday is impossible, or even assessment is carried out. This way you can talk more open- selfish. But it can make a real difference to our ability to ly, without feeling inhibited or guilty.
cope. You could go alone, or with a group of likeminded peo-ple. Looking after Yourself
Carers aren’t really very good at considering their own needs.
How can I think of myself, you might say, when my partneror relative is seriously ill? But it is vital to understand your Life is too short to wake up in the morning with regrets. own requirements too. By doing this, you will be better So love the people who treat you right. equipped to maintain your own emotional, mental and physi- Forget the ones who don’t, and believe that everything hap- cal strength to cope with all that is required of you.
pens for a reason. Know a good thing when you see it, and don’t let it slip away. If you get a chance, take it. - Eat Well
If it changes your life, let it. Nobody said it would be easy, It may sound blatantly obvious, but in order to be able to do they just said it would be worth it. everything you need as a carer, you need to ensure that you are “Life may not be the party we expected but we might as well eating a well-balanced diet. If you need help, your doctor will be able to point you in the right direction. And don’t forget totreat yourself once in a while! HELPING THROUGH YOUR WILL
- Keep Fit
If you have to do a lot of physical caring for your partner, you
may feel this is enough. But it is important to get some regu-
Your Will can be a convenient vehicle for lar exercise, such as walking or swimming. If you like exer- making a charitable gift of a lasting value. cise and gym work, that might be worth a try too. Just remem-ber, if you are new to exercise, take relevant advice. Exercise Please consider MND Association as a living releases endorphins into the blood stream, giving you that feel-good factor. It can be an excellent way of combating Many people support the work of the MND stress too.
- Time for You
Everyone deserves a bit of space, some ‘me’ time when they through bequests from their Estates. can focus on their own needs for a while. This can be as sim-ple as listening to that new CD you bought ages ago, settling MNDA FORUM
RESEARCH
…. Using human stem cells in the news
of California used the SOD1 mouse model of MND to illus- (*From Thumbprint Magazine – Spring 2007) trate the importance of glia in MND. ‘SOD1’ is an abbrevia- Stem cell research has hit the headlines recently, with the tion of the gene that is damaged in a rare, inherited form of Government (*UK*) examining the pros and cons of encour- MND. Incorporating a mutant (damaged) copy of this gene aging altruistic donors of human eggs and also considering the into mice causes them to develop MND, thus allowing potential use of animal eggs as an alternative, to create cybrids (sometimes known as chimeras). Both approaches have beenproposed as a means of generating human embryonic stem In this mouse model of MND, the mutant SOD1 (mtSOD1) gene is incorporated into both the motor neurones and theglial cells surrounding them. Dr Cleveland altered this bal- At present, there is no viable way of studying living human ance, breeding mice with a mixture of the normal SOD1 and motor neurones in the laboratory , which is greatly inhibiting mtSOD1 in motor neurones. Some mice had mtSOD1 in the understanding of MND and the search for more effective motor neurones and not the glia and vice versa. What he treatments. Stem cells offer a potential source of motor neu- found was surprising. The glial cells containing the normal rones for research, but progress in this area is hampered by a SOD1 gene appeared to protect the neighbouring motor neu- rones with the mutated gene. However, there was a negativeeffect: the presence of a few glial cells containing the dam- We appreciate the issue of stem cell research raises ethical and aged SOD1 gene can cause their healthy neighbouring motor practical concerns. But as long as the process is legal, involves informed consent, and the research itself has a soundscientific rationale, we support any such advances that bring These experiments were a clear demonstration that glial cells contribute to motor neurone death. Thus Prof Cleveland com-mented at that year’s International Symposium on ALS/MND Motor Neurone …Neighbourhood Watch
in Milan, “having good neighbours matters !” (*From Thumbprint Magazine - Spring 2007)For many years, researchers have almost exclusively looked at The Clinical Potential of Minocycline in
motor neurones when studying MND. However, over the last Amyotrophic Lateral Sclerosis
five years, the topics studied have broadened to include a (An extract of a report published by Allitia B DiBernardo MD group of cells called ‘glia’. Researchers have shown that and Merit E Cudkowicz MD MSc, of the Department of these cells, that surround motor neurones, are involved in Neurology, Massachusetts General Hospital): Motor Neurone Disease. We now know more about them andare beginning to target drug treatments specifically to alter Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, adult-onset neurodegenerative disease characterized by selec-tive dysfunction and death of motor neurones in the brain and There are many different types of glial cells including spinal cord. The disease is typically fatal within three to five microglia and astrocytes. Their role is to support the function years of symptom onset. There is no known cure and only of motor neurones. They outnumber motor neurones in the riluzole, which was approved by the US Food and Drug brain by five to ten times. When the function of the brain is Administration (FDA) in 1996 for the treatment of ALS, has imbalanced, the glial cells move from a resting state to an shown some efficacy in humans. There remains a crucial unmet need for effective neuro-protective strategies in ALS.
Recently, experimental data have highlighted the beneficial Astrocytes got their name from their star shape. In normal properties of the antibiotic minocycline in models of neurode- conditions they provide nutrients for neurones and also ensure generation. This article reviews the clinical potential of that messages between neurones are efficiently and correctly minocycline for the treatment of ALS.
Minocycline is a semi-synthetic tetracycline derivative that Microglia act as sensors for nerve cell damage in the brain and has been in clinical use for more than 30 years. The drug, spinal cord, and help clear away any damaged or dying cells.
which has broad-spectrum antimicrobial activity, is common- Their role in MND is not very well understood; to date ly used for the long-term treatment of chronic conditions such researchers are perplexed by the balance of protective and as acne vulgaris and rosacea at doses of 100-200mg/day.
toxic properties of microglia in MND.
Drug-induced autoimmune syndromes have been reportedrarely, in the order of one per million individuals treated.
In 2003 MND researchers’ attention was drawn to the role of Minocycline therefore has an established record of clinical both types of glial cell in motor neurones. Prof Don safety with long-term administration. Its small size (496kDa) Cleveland’s research group at the Ludwig Institute, University and high lipophilicity confer advantageous bio-availability MNDA FORUM
RESEARCH
and blood-brain barrier permeability. Its cerebrospinal fluid University are currently using 200mg/day of minocycline in (CSF) penetration surpasses that of other tetracyclines.
an on-going study of 30 patients with HD whom they will fol-low for three years; Cudkowicz and colleagues at Harvard Minocycline exerts anti-inflammatory effects separate and also have an HD trial underway. Minocycline is under con- distinct from its antibiotic activity. Neurological interest in sideration for phase III testing in PD based on encouraging minocycline was piqued by its effects in the setting of non- results of a recent phase II trial. The first large efficacy trial infectious injury, specifically by the finding that the drug of minocycline in humans is currently being conducted in reduced neuronal loss after hypoxic injury. In animal models of ischemia, final infarct volume was reduced both with acuteadministration and with drug delivery up to four hours afterischmetic onset. Subsequent work confirmed minocycline’s *The Star Newspaper – 9 May 2007
neuroprotective effect in several models of acute and chronic neurodegeneration, including hemorrhagic and ischemic Researchers have developed the first antibody that detects the stroke, spinal cord injury, traumatic brain injury, multiple only known cause of the fatal nervous disorder ALS, or Lou sclerosis, Parkinson’s disease (PD), Huntington’s disease Gehrig’s disease. It identifies “misfolded” mutations in the (HD), ALS and epilepsy. Contrary to numerous reports of the enzyme superoxide dimutase-1 (SOD1), which cause about potential benefits of minocycline in neurogical disease is data one to 2% of all cases of ALS. The antibody could eventual- suggesting that the drug may have no effect, or may even ly help to diagnose the disease earlier and find ways to immu- exacerbate disease in models of HD, PD and stroke. On bal- nise against it, researchers at the University of Toronto’s ance, pre-clinical evidence favouring the neuroprotective potential of minocycline, in combination with its excellentcentral nervous system (CNS) penetration and well-estab- ALS is a progressive disorder that attacks the nerves and mus- lished clinical safety, make the drug a viable candidate thera- cles causing complete paralysis and death usually within two py for ALS and other neurodegenerative diseases. Whether to five years. There is currently no known cure or effective minocycline will prove effective against neurodegeneration in humans is not yet known. Jankovic and colleagues at Baylor Patient Peter Thorburn (of Bergvliet, Cape) and his wife Rosemary at a Support Group get-together in Somerset West MNDA FORUM
CONDOLENCES
Condolences to the Family and friends of:
Marjorie Calitz, Prof David Erasmus, Margaret Prins, Jean
There is another way that is far more lasting to show we care.
It’s a way of expressing hope that one day a cure for motor Prof Wynand Herholdt, A van Graan, Leo Nel, Anna Foggitt, neurone disease will be found, a way in which we can offer a A little boy (aged 3) hugged and kissed his Mom goodnight – Support to people living with MND and their families, is pro- vided through telephone contact, information, personal visits, That when you die I’m going to bury you outside my bedroom practical help and the loan of necessary equipment.
When you make an “In Memoriam” donation to MNDA wewill send the bereaved family a card acknowledging your gift.
Instead of flowers …. Another way to honour your loved
The card identifies you but does not mention the amount given. (Please let us have all relevant details and remember When someone close to us dies, we experience grief, sadness when sending a cheque, to correctly insert the Payee’s name).
and, ultimately, an appreciation of all the memories we haveof that special person. In our sadness, we look for a way toexpress our feelings, to let close ones know our feelings. Patient Kennith Rhode of Eerste River and his wife Estelle We welcome your ideas – THUMBS UP is your voice –
So if you would like to Contribute to the next issue – Please write to us !
MOTOR NEURONE DISEASE ASSOCIATION of South Africa

Source: http://www.mnda.org.za/pdf/mnd-news-june2007.pdf