Griffith Dixon

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Griffith Dixon is an outspoken, modern day young man with old school values. He describes MS as “not an easy ride”, but he speaks about the illness with knowledge and respect. It quickly becomes clear who wears the pants here – and it’s not multiple sclerosis.

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Griffith Dixon is an outspoken, modern day young man with old school values. He describes MS as “not an easy ride”, but he speaks about the illness with knowledge and respect. It quickly becomes clear who wears the pants here – and it’s not multiple sclerosis.

griffith-dixon-02Griffith remembers the exact date of diagnosis: 09 July 2013. He was 27 years old at the time. After he left the consulting rooms in a daze he realised that he was given very little information about the illness and possible choice of treatments.

He didn’t know much about MS, but he seemed to have a vague recollection of an acquaintance who had it. According to his mom and dad there was no history of the illness in their families. He felt the need to gather information and for Griffith this is where he encountered an unexpected Achilles heel.

Being a typical Generation Y person (born between1981 – 2001 and having grown up with many world-changing events including the rise of mass communication, the Internet, and the 9/11 terrorist attacks) Griffin practices the perspectives this generation has become well known for: disagreements between conservative and progressive standpoints. This was going to be an interview with a difference.

griffith-dixon-03So here is this young man calmly talking to me about MS and in a matter of fact way telling me that he is way too busy at work producing corporate films to allow the illness to get in his way. So, when doing research about MS, he cannot allow the myriad of negative articles found in abundance on the internet to clutter his brain. He prefers to deal with science and proven facts.

We talked about the lack of support specifically for young people living with MS in South Africa. Griffith explained that there is a whole new generation of youngsters needing information and support which they get from those having lived with MS for most probably the majority of their lives. This older generation (of which I myself am a member) have learned to make the illness their own, MS has become their property – it’s a coping mechanism. But for a young person of 15, 24 or 28 years old, this can be a daunting outlook on their future. They need a more modern way of communication (maybe funky is the right word?) to build their own relationship with MS. It is a definite need in South Africa.

griffith-dixon-04Griffith is not naïve, he is fully aware that MS could be the devil itself, but until such time, he will gain as much knowledge as he can to nurture the positive outlook he has on his life. It is his choice to manage each situation as it comes along, but in the meantime he is concentrating on living a healthy life with a balanced diet and adequate exercise.

The young man is a dedicated family man. He speaks fondly of his three sons and the ongoing support from his wife, parents and siblings. “The thought of me losing my family, or my family losing me has never crossed my mind” – it is clear that he has genuinely never considered this, until today when prodded about the worst scenario. Together they will face the challenges MS might present – it can be done.

Griffith Dixon is a modern day classified generation Y with old school values, it seems he has his p’s and q’s sorted to put his own copyright on multiple sclerosis.

Source: ypiaee.wordpress.com

Author: Madelein du Toit

Ruth Tladi

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Ruth Tladi is visibly breathless when she approaches us at our table in the McDonald’s at the Diepsloot Mall in Soweto. Although 24 years of age, the short walk from their home to the mall clearly exhausted her. Cousin Abraham follows closely, wiping perspiration from his brow.

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Ruth Tladi is visibly breathless when she approaches us at our table in the McDonald’s at the Diepsloot Mall in Soweto. Although 24 years of age, the short walk from their home to the mall clearly exhausted her. Cousin Abraham follows closely, wiping perspiration from his brow.

ruth-refuses-to-give-up-on-herself-01In between large gulps of ice cold Coke, Ruth makes a simple statement. “I have MS”. Trying to fill the silent gap that follows we start questioning her about where, when and how. Ivan Stander (vice chairman of the MSSA Inland Branch) and I have 40 years of MS living experience between us, we don’t know it all, but we are comfortable speaking about it all.

In 2009 Ruth had an incidence of optic neuritis (both eyes) and numbness on the left hand side of her body. She spent 4 months in hospital enduring test after test before she was diagnosed with Scleroderma and Multiple Sclerosis. (See definitions below.)

The past six years have been challenging. Besides the shattering new of her diagnosis, during this time she lost both her parents and nursed her brother on his cancer death bed. There was little, or no time to digest her own predicament.

The Sesotho girl was given minimal information about both conditions and as there was little support from her family she resorted to making use of whatever was available and affordable to her to empower herself.

Meanwhile, the scleroderma took its toll and she could not bear looking at her crusty, purple skin. She felt very lonely and isolated when was pointed at or randomly stopped and questioned about her appearance. As both conditions have similar symptoms, she gave up wondering which one was to blame for the fatigue, the muscle spasms or the sleep deprivation. At least the scleroderma was visible and could be explained, but the MS symptoms were misinterpreted as laziness and insecurity, something a local GP could surely put an end to? “My relatives expected me to carry on as they knew me, as normal …” Ruth comments sadly. Her family living in the small town of Bethlehem, Eastern Free State do not understand why the young girl cannot take up her household chores as usual.

ruth-refuses-to-give-up-on-herself-02Help and support eventually came in the form of her cousin Abraham (now 37) who learnt about her conditions and accompanied her to doctor’s appointments and the many hospital regimens. He shakes his head a lot as Ruth speaks and looks sad at times. “She doesn’t sleep” and “… they (the family) just don’t understand” he emphasises throughout. Abraham doesn’t have a permanent job, he prefers ‘piece jobs’ so that he can be available at all times to help care for his cousin, getting her up from a chair when her leg muscles painfully spasm, helping her to sit down when again, the muscles spasm.

The research done by the two cousins have borne fruit and they both have a good knowledge of MS. “I show the family, it’s all here!” Abraham quips and thrusts his mobile phone upwards showing a MS website on the screen. Their mobile phones are their only source available for research and money for air time is carefully budgeted for. But, they insist to empower themselves so that sessions with the neurologist and rheumatologist are informative for all parties concerned. Ruth’s appearance has improved hundred fold after they found the correct treatment for her. “I am so much better now and can look at myself again”, she points to her face and arms where the scars have all but faded.

Sometimes MS does overlap with other autoimmune conditions, but seldom with scleroderma. As the skin condition is more under control, Ruth is presently considering interferon beta-1b for multiple sclerosis, a disease modifying therapy which slows down progression. Although the medication is available at some state hospitals in Gauteng (Ruth cannot afford medical aid), she fears the injection part and had many questions for Ivan who has been on this treatment since 1994. Not looking convinced at all about the benefits of the therapy, she remained positive – “I don’t like giving up on myself!”

In order to supplement income, Ruth works as a cook at a take away from 09:00 till 21:00. The walk to work takes her 25 minutes each way. Taxi rides are not an option as her movement is slow and irritates taxi drivers and passengers alike. Walking prevents stressful confrontation.

ruth-refuses-to-give-up-on-herself-03Mornings at work are bearable, but as the day wears on, symptoms set in and she prefers to remain standing for fear of not being able to get up from her chair when customers approach the eatery. Most nights she contacts Abraham to fetch her from work: she literally needs his shoulders to lean on as they walk back home.

Ruth mentions that she has made a fact sheet explaining MS which she sends to friends on their mobile phones to give them some insight of the symptoms of her illness. “I do this immediately when I meet someone that I think will become a good friend” she muses. Abraham dryly suggests adding mood swings to the symptom list. Although Ruth has a tough life coping with two illnesses for which there is no cure, she faces her challenges head on and the 24 year old has become a wise old soul.

When we drop the cousins at their home in Diepsloot, Ivan and I are quiet. Our own attempts at living with this one illness seemed to fade in comparison with what we have just witnessed.

What is scleroderma:

ruth-refuses-to-give-up-on-herself-05Nearly everyone who has scleroderma experiences a hardening and tightening of patches of skin. These patches may be shaped like ovals or straight lines. The number, location and size of the patches vary by type of scleroderma. Skin can appear shiny because it’s so tight, and movement of the affected area may be restricted.

Scleroderma (skleer-oh-DUR-muh) is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.

In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.

Scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50. While there is no cure for scleroderma, a variety of treatments can ease symptoms and improve quality of life.

Definition:Scleroderma is a progressive disorder characterized by thickening and tightening of the skin — especially on the arms, face and hands — which results in loss of flexibility.

Source: www.mayoclinic.org

Multiple Sclerosis and Scleroderma

Multiple sclerosis (MS) sometimes occurs along with other autoimmune diseases but seems to be rare in association with systemic scleroderma. Very few cases have been identified in medical journals.

Further reading:

Lisa W: Diffuse Scleroderma, CREST and Multiple Sclerosis I was recently diagnosed with multiple sclerosis (MS). That also took over a year to diagnose. My doctors tell me that I am one out of millions with this case of bad luck…

Source: www.sclero.org

Author: Madelein du Toit and Ivan Stander

Michael and Brandon find their freedom on Mount Kilimanjaro

michael-and-brandon-find-their-freedom-on-mount-kilimanjaro-01When I meet with the Cole family, Michael (18) just finished his last paper for the matric exam (November 2014). He says he doesn’t quite know how he feels, yet. But typically the young man’s hungry …

Brother, Brandon, still has two years of schooling left, but he does not seem to be daunted by the fact. He too, is hungry. While they enjoy lunch, we speak about climbing mountains.

My first question has to be why? There must have been a considerable incentive for the brothers to choose sponsorship to climb a mountain above birthday gifts? And not any koppie or hill close by, but Mount Kilimanjaro, the highest mountain in Africa and, at 5,895 metres above sea level, the highest free-standing mountain in the world.

“Initially it was mom’s suggestion,” Brandon says, but after he read Mike Hamill’s book Climbing the Seven Summits, inspiration turned to rigorous research. The family’s love for nature and outdoor living seemed to embrace the adventure and their plan started to gain momentum. They also instinctively knew to whom they will dedicate their Mount Kili climb.

The boys grew up with their great uncle who was diagnosed with multiple sclerosis in his late thirties. They never knew him in any other way. But they do know of his bravery and the dignity with which he carried the illness. “We saw him deteriorate” Michael says and Brandon nods in agreement. “We did, it wasn’t nice” he comments. When their uncle passed away in 2010 due to MS related complications, the boys always played with the idea of one day doing something to create awareness of the illness.

michael-and-brandon-find-their-freedom-on-mount-kilimanjaro-01When I meet with the Cole family, Michael (18) just finished his last paper for the matric exam (November 2014). He says he doesn’t quite know how he feels, yet. But typically the young man’s hungry …

Brother, Brandon, still has two years of schooling left, but he does not seem to be daunted by the fact. He too, is hungry. While they enjoy lunch, we speak about climbing mountains.

My first question has to be why? There must have been a considerable incentive for the brothers to choose sponsorship to climb a mountain above birthday gifts? And not any koppie or hill close by, but Mount Kilimanjaro, the highest mountain in Africa and, at 5,895 metres above sea level, the highest free-standing mountain in the world.

“Initially it was mom’s suggestion,” Brandon says, but after he read Mike Hamill’s book Climbing the Seven Summits, inspiration turned to rigorous research. The family’s love for nature and outdoor living seemed to embrace the adventure and their plan started to gain momentum. They also instinctively knew to whom they will dedicate their Mount Kili climb.

The boys grew up with their great uncle who was diagnosed with multiple sclerosis in his late thirties. They never knew him in any other way. But they do know of his bravery and the dignity with which he carried the illness. “We saw him deteriorate” Michael says and Brandon nods in agreement. “We did, it wasn’t nice” he comments. When their uncle passed away in 2010 due to MS related complications, the boys always played with the idea of one day doing something to create awareness of the illness.

As children they often had to field questions about MS. “People seldom knew what my uncle’s illness was about” says Michael. One could see he was ill, but he never complained or mentioned it, he just got on with his life. The Cole brothers knew that climbing Mount Kilimanjaro would be the perfect way of honouring their uncle’s life.

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And so, after a period of planning and training, the boys left for Kilimanjaro Airport, Tanzania (where Kili climbers are generally treated as celebrities). The Cole family could stay in touch via Skype and e-mail and at this point mom Carol became quite nervous about Brandon’s asthma problem. Thankfully Brandon actually found his problem behaved well and the brothers experienced no altitude side effects. They could tackle the last climb to Uhuru and summit Mount Kilimanjaro with confidence.

The youngsters started their last climb around midnight and reached the summit on 11 August, 2014 just before sunrise (at 06:08) and were back at base camp at 07:50.

Michael and Brandon describe the summit as the highlight of their lives. “The exhilaration of completing our climb is a moment I will not forget, ever” Michael said. Brandon commented that the magnitude and reason of their climb only became real at that moment.

To add to the experience the brothers witnessed a phenomenon which occurs only once every 5 years: on a certain date the moon is at its closest position to the earth resulting in an astoundingly bright full moon on Uhuru. Privileged indeed!

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And their future plans? Michael has been accepted at the University of Stellenbosch where he will be starting a BSc Engineering degree (2015). Brandon is still playing with a few ideas for future studies, but has already begun research about climbing Mount Everest!

Watch this space!

Interesting:

  • Moshi is referred to as the coffin town, the last stop for those living with HIV AIDS, TB and Malaria.
  • The weather on the day of their summit: wind 30 knots and temperature -18°
  • Their guide, Nelson, has been up and down with people on Mount Kili 200 times! His own personal record.
  • Kilimanjaro means white mountain, Uhuru means freedom. (Swahili)
  • Ten interesting facts about Mount Kilimanjaro.

Resources:

Author: Madelein du Toit

Brian Eades

11 August 2014

My name is Brian Eades.  I was diagnosed with MS early in 2000, after suffering for some time with co-ordination and general body strength.  This was especially noticeable in my golf, squash, action cricket, gym and even walking and fatigue at work. I was never much of a sportsman but tried everything. I had to give up all sports and join aqua aerobics which I didn’t enjoy.

I had a very high pressure job, being the GM of Marketing Research, New Product Planning and Marketing Planning/Marketing Project Management at Toyota SA. This meant extensive travel to Japan (I’ve been about 50 times) and sometimes Europe as well as lots of local business travel.  My first few years of MS , I had about two attacks a year and used to go for cortisone on my way to work. Attacks went down to about one a year. In 2006, I was promoted to GM of Marketing Communication (Advertising, Promotions, Public Relations etc) which reduced international travel but drastically increased stress with a big staff, contractors and an enormous budget for Marketing activities. By 2008, I had had enough of the stress and my Neuro boarded me. My attacks reduced, but I had big family stress and had 3 attacks in 5 months at the end of 2011. My recovery has been was slow but consistent in the last 2 years.

In January of this year, I started exercising with a Biokenetist. My strength and balance started improving immediately.  I am a really determined person and by the end of March, I decided it was time to do something for the PwMS that can’t afford care, and to create awareness for the disease.  I heard the Discovery 702 walk the talk advertised and thought it was the ideal way to do raise some funds and awareness.  I selected a team of 38 (mostly couch potatoes), and entered the team. My Avonex supplier Litha Pharma offered to sponsor us.  I started walk training and got up to 5 or 6 km 3 times a week as well as Biokinetics exercise. About 15 of our team entered the 20 km walk (not the couch potatoes). I  also entered 20km but Prof Modi, By Bio (Lizette of Biokinetics) and my wife insisted that I do less. I reduced my target and did 10 km (plus 3km walk to the parking and back.). The rest of the team, including my 7 year old grandson did the 5km.  What a rewarding experience!  The organising, publicity (I arranged an interview on Radio702 / Cape Talk) and lots of Facebooking> The brilliant team spirit and we were a stand out with our orange kit on the walk.  What a team (The whole walk of 50 000 participants had a great time). Donations are rolling in as well.

So, If you know someone with MS, don’t give up, and challenge them to adopt my moto “KEEP ON WALKING”
 
Brian Eades
076 420 9830 

A person with MS sharing her experiences….

3 May 2013

What could the connection be between Multiple Sclerosis and Long distance Trucking in South Africa? ….. Me, Petra de Waal is the connection.

I’ve been diagnosed with Multiple Sclerosis in 2006 and Fibro Myalgia, Rheumatoid Arthritis and Sjogrins shortly afterwards. This all means that my nervous system my muscles joints and glands are not so well and do not feel so well most of the time.

I am very fortunate as the spots on my brain are few and far apart and haven’t had a relapse since the beginning of 2010 shortly after I started to inject myself with Betaferon. The other pains I am getting used to by now.

That brings me to trucking: I married my wonderful husband Daan on the 27th of February 2011 and started living on the 16 wheeler that he drives in November last year as we both realised that it is not good for any relationship if the partners only see each other for a day or two each month.

We have had so many wonderful moments and shared so many beautiful scenes and I feel so blessed that I feel it is time to start sharing and maybe be a blessing to others.

So, watch this space. I will be sharing some of my experiences daily

Petra de Waal

Letter to the Editor

Dear Lucille,

Just want to congratulate you on an interesting and informative newsletter!

I have had MS for 20 years now and am happy to say that I am currently well, although my legs have been affected so that I have to use a walker or wheelchair for mobility.  I have a Shoprider electric wheelchair/scooter and love the independence it has given me compared to the standard wheelchair I used previously.  I love watching the reaction of little boys when they see me.  I can just see them thinking:  ‘Why does SHE get to ride that fun scooter when I have to walk?’

Over the years I’ve looked at and tried a number of ways of eating and I think healthy eating definitely makes a difference to well-being.  After reading up on the Blood Group diet I learnt that the B blood group (which I belong to ) is the group mostly affected by diseases like MS.  Would be interesting to find out how many MS sufferers have B group blood.  Anyway I have been following the diet for a while now and am feeling really healthy and well.  As the article on diet stated, there is no diet proven to aid MS but I think healthy eating can only be of benefit.

In terms of exercise I subscribe to the ‘If you don’t use it, you lose it?’ theory and think we need to exercise as much as we are able to.  I’ve found that swimming is the best exercise for me and have swum the disabled class of the Midmar Mile twice.  Am aiming for Midmar 2014 again!

Thanks for an excellent newsletter!

Regards

Nicolette Bosman
nicki-bee@iburst.co.za
0829245735/0110398115/ (Fax) 0865084191