MISUNDERSTOOD (PART 4 OF MY STORY)

Today I am taking a moment to say good bye to one of the passions of my life; movement, especially movement to music.  There is no denying that it was once an important part of my life and the joy that I got from dancing, stepping and aerobics etc, can probably only be fully understood by fellow dance enthusiasts.  All of them obsessive by nature – or how else could you explain the many hours of repetition, even through pain!

Last week a neighbour dropped in for a quick visit and caught me in the act of doing my exercises, as prescribed by my therapist.  Her jaw dropped and I could see the disbelief in her eyes as she watched me lying on my back whilst exercising abdominals, gluteus muscles etc., and stretching.  I knew she was thinking that anyone who could do that shouldn’t be using a wheelchair and I despondently wondered how to explain this strange movement disorder to her, for, like many people, she assumed that all wheelchair users are paralysed.  Where do I start to explain to her that what she saw was the last glimpses of a former exercise instructor and dancer: someone whose movement memory automatically kicks in to point her toes and stretch her legs when she starts moving.  What she didn’t see was how difficult it was to transfer from the wheelchair to the bed, the struggle to roll over from a face down position onto my back, the ungraceful attempts to get into a kneeling-on-all-fours position, the severe loss of balance when I try to stand….

Her reaction reminded me of those last couple of months in the gym when some members treated me like I was crazy, and I suddenly understood why they thought that.  Although my lack of balance made it impossible for me to do the standing (sometimes beginner) poses in yoga, my natural abilities and strength still allowed me to do some of the more advanced poses when sitting or lying down.  At that stage I could no longer do any of the movement classes that required balance and co-ordination, but all seemed normal when I used the stationery cycle and stepper machine.  I now realise how confusing it must have been when I said that I couldn’t do certain activities because of lack of balance, but then went ahead and appeared to be quite competent at other activities.  But that was just me; doing what I could still do to the best of my abilities, and that is what my neighbour saw.

Now I often read about MSA patients who were initially thought ‘crazy’, and sometimes even treated in mental care for some time, before finally diagnosed.  If could change only one thing through our awareness campaigns and my blog, it would be to educate people to understand neurological diseases better.  The first symptoms are often very subtle, but very real to the patient.  Tests are mostly done to eliminate the possibility of other diseases, so when tests come back negative, it doesn’t mean that nothing is wrong.  Diagnoses are mostly made on symptoms, and can only be made when a patient has developed enough symptoms.  These symptoms can take years to develop.  Usually very stressful years, filled with expensive medical tests.  During this time one has to come to terms with the fact that something really bad is happening in your body, and instead of getting support, patients are often misunderstood and thought to be psychosomatic nutcases.  Hopefully, sometime in the future, doctors will be able to diagnose these diseases earlier to cut back on those traumatic years when one’s life kept in limbo. 

Every now and then I read articles on the possibility that exercise can greatly improve the symptoms of Parkinson’s and MSA.  Some of them even profess the value of forced exercise. I certainly don’t disregard the value of a regular exercise routine, but if anybody could have stopped this disease by exercising, it would have been me.  I put up a great battle for a long time. By the end of 2009, with the help of a neuro-physiotherapist, I tried even harder and in retrospect now wonder if I perhaps tried too hard.  Was too much exercise perhaps the cause of my extremely painful and stiff hip?

By the end of January 2010 I no longer had the balance required for the standing poses in the yoga class and my stiff and aching hip made the rest impossible to do. During the next couple of months my abilities started deteriorating rapidly and I started falling more often.  By the end of June 2010 I started walking with a stick and gym became too risky.  I continued exercising with the assistance of a biokineticist until I was diagnosed with MSA on 6^th September 2010.

That dancing, hiking, and fun loving girl seems so distant now, and as I continue on this new journey, she has lost importance.  Hopefully I have outgrown her for the better!  But occasionally certain images trigger my memory and I fondly remember how much control she had over this body, for now I have little control.    

PRAYING THAT IT’S PARKINSON’S DISEASE (PART 3 OF MY STORY)

The year 2009 will always be remembered as the ‘year of the weddings’, and we had no less than four to look forward to.  First up was an intimate family wedding at the beginning of March, followed by those of the daughter of our friends at the end of March, a work colleague of Johnny in April, and a very good friend of our eldest son in May.  

Listening to all these vows made me realise how lucky I’ve been to get a loving and supportive husband like Johnny.  We celebrated our 35^th anniversary in April 2009 and experience has taught me that it takes two committed partners, giving it all they have, all of the time, to make a marriage work. But, with a smile, I remembered that impulsive 19-year-old girl, who was ill-equipped for the serious vows she undertook, and I couldn’t help but think that luck, hardworking angels, God’s blessings, and a lot of patience from Johnny played a roll as well!

By then I had established a good relationship with the neurologist, whom I got to know as a caring, supportive, and dedicated doctor. I could count on him to always return my many calls to report new symptoms, sometimes long after normal working hours.  I also knew him well enough to know that everything he said had to be taken seriously.  By August my muscles were twitching randomly, I had coordination problems and bladder problems, and I was moving slower. There was also a slight loss of feeling in my left leg and I was seeing the physiotherapist regularly for back ache.  Some of these symptoms were not consistent with the suspected Parkinson’s disease and I was sent for more spinal MRI’s, a consultation with a neurosurgeon, as well as with a urologist.  After being cleared by them, he looked me straight in the eyes and said that he hoped that this was not one of those untreatable, incurable conditions, like a Parkinson’s syndrome.  He explained the difference between the two, after which I fled his rooms, for the first time praying for a Parkinson’s disease diagnosis.  A quick browse on the internet revealed a selection of awful diseases that I’ve never heard of and left me wondering if one of them could possibly be the cause of my symptoms.

But there were lots of things to organise and I was kept busy by two projects: holiday planning, at which my friends will tell you I excel, and home renovating.  My loving husband is not exactly known as ‘Mr Fix-it’, so the task of dealing with builders has always fallen on me, and although I thoroughly enjoyed it, I fortunately have friends who excel at this.  So with their help, I planned and got quotations for the remodelling of our kitchen and we set the date for the builder to coincide with the return from our holiday. As an afterthought I got a wheelchair and my friend and I wheel it around to see if this planned kitchen would be wheelchair friendly if necessary. The only problem area would be the small scullery and we decide that if I should be so unlucky to end up in a wheelchair, I should be exempted from washing dishes for the rest of my life!

By then my physical condition no longer allowed our usual 4 x 4, bundu- bashing-camping type of holiday, and we opted for self-catering chalets in the Kgalagadi Park in the arid, but beautiful Kalahari.  As always, we enjoyed our stay in this more intimate park, but during our time there I started getting tremors on the left side of my body.  On our return I consulted the neurologist, who concluded that I now had enough symptoms for a Parkinson’s disease diagnosis.  If it is PD, the prescribed dopamine medication should have a dramatic effect on my symptoms.  I should be able to climb my beloved mountain again. Normal movement and ending the uncertainty of not knowing what the cause of my symptoms were, was an appealing prospect.

I started taking the medication on the same day that the builders moved in with the jackhammers to break out the old kitchen.  During the following chaotic weeks, the neurologist gradually increased the dose, whilst I tried to coordinate the different stages of the renovations and delivery of supplies from the make-do kitchen in the lounge.  I was desperately praying that at some stage the dopamine would reach sufficient levels to allow the promised dramatic improvement to happen.

At the last consultation of the year in November the neurologist was still hopeful that this would happen and he sent me to a neuro-physiotherapist for exercises to improve my balance.  Besides the strengthening exercises, she also recommended walking on the beach with an iPod, hoping that this would improve my uneven gait. 

2009 ended on a disappointing note; except for a beautiful new kitchen, I had achieved nothing but a stiff and aching left hip.

IS IT PARKINSON'S? (PART 2 OF MY STORY)

When I started writing my story I thought it would be easy, and I didn’t anticipate that in the process of digging up the facts I would also relive the emotions of fear and anxiety that I felt at the time.  I have always found it difficult to write about the difficult times, and have always tried to project a positive attitude by balancing the grim truth with pretty photos of happy times or funny clipart pictures.  It took me longer than usual to write this part of my story, and I hacked my brain and my photo files to add some happiness and glamour to the events that took place from April to December 2008.  I simply couldn’t find much.  I hope that this insight into my journey will lead to a better understanding of MSA, other neurodegenerative diseases and the people who battle with these diseases every day.

April 2008.  After the hiking experience (read 'Encounters with lions'), we spent another week in different camps in the Kruger National Park, enjoying early morning game viewing trips, afternoon siestas and relaxing evenings next to the campfire.  Johnny, however, experienced chest pains on more than one occasion whilst unloading our luggage from the car.

Back home I was determined to beat these silly symptoms, and with steely determination I attempted to improve my balance by developing my stabilizer muscles.  Some of my attempts on the bosu probably made me look like a circus lady in training and resulted in me ending up bruised on the studio floor.  Although I was forced to drop some of the more advanced and dangerous activities, I continued to exercise on the treadmill, stepper, cycle and circuit equipment.  I also continued doing pilates and yoga.  However, the stairs up to the gym had become an increasing challenge - I had started holding on tight, concentrating on every step.

June 2008.  After several more incidents of chest pains, Johnny consulted the cardiologist.  He decided to do an angiogram to see whether there were any blocked arteries, and if necessary, to insert stents.  Subsequently, two stents were inserted in what the cardiologist called ‘severely diseased arteries’.  At that time I encouraged him to adopt a healthier lifestyle and we changed our diet to low GI, low fat and high fibre.  This diet helped him to lose weight, but no matter how much of this healthy food I ate, I lost more weight as well.    

My next consultation with the neurologist was in August 2008.  By then I had a slight ‘dead’ sensation in my left foot and lower leg, as well as an ‘inner tremor’ (it feels like you are shaking inside, but it can’t be seen on the outside).  The doctor also noticed reduced arm swing when I walked, which could be another indication of Parkinson’s disease.  He also sent me for neck scans, but the neurosurgeon ruled out the possibility that my symptoms were caused by an old neck injury.  When I voiced my fear of a Parkinson’s diagnosis to the neurologist, he gently assured me that PD is a very treatable disease and nothing to fear nowadays, but to me it remained an unacceptable threat.

By October 2008 the neurologists insisted that we get a second opinion, but before we did that, a lumber punch had to be done to rule out diseases of the spinal column.  The lumber punch is a pain-free procedure nowadays and all went well, but to prevent the dreaded post-lumber punch headache, I had to remain flat on my back for as long as possible after the procedure.  I was discharged from hospital the next morning, only to be re-admitted two days later when I woke up with a scull-splitting headache.  This time I had to stay there for another two days.  The test results came back negative and I had to endure the remark of a friend who said that ‘I should be thankful that there is nothing wrong with me’.

I saw the second neurologist in November and his verdict was that ‘it is most probably a type of disease like Parkinson’s’, and he recommended that I started taking Parkinson’s medication.  The insensitive manner in which he discussed a Parkinson’s patient with dementia with another doctor, whilst drawing pictures of nerves and explaining the workings of neurotransmitters, proved to be too much for me to handle and I cried all the way home.  My neurologist, however, was not yet convinced that is was Parkinson’s disease and disagreed with him.  He felt that medication at that stage would have masked the symptoms, making it more difficult to make a diagnosis.

The year ended with the death of my much-loved mother-in-law, after a short sickbed.  Despite her failing health and Alzheimer’s, her cheerful and loving personality made her very popular with the staff in frail care, as well as with family and friends.  It was a sad Christmas, dominated by funeral arrangements, leaving us with little time to recover after a stressful year, and feeling apprehensive of what might lie ahead.

 

THE FIRST SIGNS (PART 1 OF MY STORY)

  

My new friend, Brenda Paquet, from Ottawa, Ontario, wrote to me recently asking about my journey with MSA.  When did I notice the first signs? What was the transition like from being fully functional and totally independent to the wheelchair?  Brenda was diagnosed at an early stage with MSA, at more or less the same time as me in 2010.  She was formerly a marathon athlete and, like me, had a very active lifestyle.

This is for you Brenda.

In August 2007 a family member invited my friend, Susan, and me to join a group of 12 people on a 5 day hiking trip, the Whale Trail, along the south western coast of the Cape.  I enthusiastically agreed and I had no doubts that I would be able to handle this physical challenge.  My daily fitness regimen included regular short walks up Helderberg mountain in Somerset West, and the beach of my hometown, Strand.

The first day of the hike was mostly steep uphill and whilst everybody was huffing and puffing, my fitness made this easy going for me.  However, the second day, being mostly downhill towards the coast, left me with a sharp pain in my left knee and my big toes showing signs of bruising.

From the third day the route follows the beautiful coastline in the pristine De Hoop nature reserve and we saw plenty of whales, who visit our coast annually.  It also meant constantly hiking up and down dunes.  At that stage I was the only hiker looking forward and enjoying walking uphill, but dreading the downhill hikes because of the torturous pain in my knee and toes.  By the end of this day my bruised toes were looking a lot worse and I wrapped them in plasters and vowed not to look at them until I get home.  I knew that if I abandoned the hike, that at the very least, it would mean that my friend would have to give it up as well, because we travelled there in her car, and I was determined not to be the cause of such a disruption.

The diversity of plant growth in the De Hoop reserve

My toes were in a shocking condition when I unwrapped them two days later.  A pulpy, purple, swollen mess with the toe nails barely attached and I immediately went to the doctor, who took one look at the toes and determined that the nails had to be removed for proper healing without infection, and diagnosed the ‘knee problem’ as iliotibial band syndrome.

There was only one problem though.  We had the coming weekend booked to go and see the annual display of spring flowers in the Nieuwoudtville district and I had shopping and packing to do.  The best solution the doctor and me could come up with was that I finish what needs to be done with the toes in their current state, and then return for the painful removal procedure.  Our friends, Frans and Susan, had serious doubts whether I would be in any condition to go on this trip the next morning, but I did not disappoint them and we had a fabulous, flower filled weekend with me shuffling along.

The ‘knee problem’ disappeared at the cessation of the hike, but a month later I was still struggling with painful feet and thus, made an appointment with the physiotherapist.   I was hoping that a couple of sessions with her would speed up my recovery, allowing me to get back to my exercise program.

It was during one of these sessions that the physiotherapist, who attends the same gym as me, knows me well and has often seen me stepping and dancing, told me that she was worried about me.  Besides unexplained weight loss during the past three years, something in the way I moved was amiss and she suggested consulting a neurologist.  Although I was at that stage having problems with climbing stairs, I thought it was her imagination and told her she was fussing over nothing.  Once my feet were okay, everything would return to normal.

The feet healed and I resumed all physical activities, but I started experiencing problems in the advanced step class and dancing classes.  Balance problems, tripping over the step, the occasional fall, coordination problems, difficulty with turns.

But I had more serious problems demanding my immediate attention.  My 92 year old mother had taken ill and died within a week.  Although weakened by age, she was always, in Johnny’s words, “a tough cookie”, and her sudden death left an unexpected gap in our lives.

When, by January 2008, I became too slow to finish choreography within the time limits of the music, I had to admit to myself that something was wrong.  I have to see a doctor before I fall and break something.  By now the toes on my left foot were not lying like peas in a pod when I pointed them. At this stage nobody else could actually see what I was fretting about and a friend said that the physiotherapist suggestion that something was wrong, was playing tricks with my mind.

The GP was sufficiently worried by my symptoms to refer me to a neurologist, whom I consulted in March 2008.  He concluded that, although the symptoms were subtle and well masked by my strength and fitness, I needed to go for brain and spinal MRI scans, as well as blood pathology, to eliminate the possibility of tumours etc.  All results came back negative and his comment that it might be the start of something like Parkinson’s disease, wasn’t taken seriously.  We were on our way to a hiking trip in the Kruger National Park (see my blog called “Encounters with lions”), and nothing was going to rob me from this experience!

Only in retrospect do I see that there were subtle signs even before 2007.

2004 – I started losing weight.

2005 – I started Latin solo classes, which went very well, but I had  balance problems when doing travelling turns.

2006 – The dance teacher keeps telling me that my left leg is never completely stretched.  By the middle of the year I gave up dancing, feeling frustrated, but also because of a huge growth under my right foot.  In December I take time out to have the growth surgically excised.  Christmas saw me on crutches or hopping along on the left foot, but falling more often than expected from someone who normally had very good balance.

2007 – I take a long time to completely recover from the foot operation and blamed struggling to climb stairs on this.


2007 - The underlying weakness in my body could not cope with the extra load of hiking for several hours a day.  The arches of my feet are now collapsed and the toes splayed.  At the time of the hike that probably caused my toes to slide more forward in my boots, resulting in bruising of the toes.

A BREATHTAKING MOMENT

As the 3^rd of October and MSA AWARENESS DAY drew nearer, Susan (my loyal friend who is caring for me whilst Johnny is away on his travels) and I kept a close eye on the weather forecasts.  This time of the year in the Cape we often have all four seasons within a week, leaving us ladies staring desperately at our wardrobes, wondering what season to dress for.

So the moment we woke up Susan went out to get the newspaper and came back with the good news of clear skies and no wind.  A beautiful morning for our walk!

When we arrived at the starting point, there were already a few people waiting and soon after the numbers increased to a small crowd.  My friend, Laurette, was ready with her camera to record this event and off we went along the beautiful beach of my hometown, Strand.  My friends took turns to push my wheelchair and much too quickly we completed the first half of the walk.

Thanks to Karin’s organisational skills (is there anything she can’t do?), Casa Del Sol opened their doors early for us and we arrived at a well- organised venue for coffee and a chat.  We spent some time there getting to know each other, posing and taking more photos and lighting lots of candles.  I also, very shakily (stress increases my tremors), attempted to read my speech of welcoming and thanking everybody.

Some of the people there have been part of my life for a long time, but I also met a couple of new friends.  My friend, Ed Lunnon and his wife Pera, from Port Elizabeth, also came to support us.  Ed is fighting his own battle with an even rarer neurological disease, CBD (Cortical Basal Degeneration) and I have learnt many lessons from the way he handles his disease.

Karin and Ed 

As I looked around at the faces around me, I realised that during the past year I have gained as much as I have lost.  I saw this group of amazing and caring people around me and I felt surrounded by their love.  Some of them had taken leave from their jobs to be there.  Others have travelled some distance to be there.  All of them cared enough to come and honour me and MSA with their support in this awareness campaign.

  

My friends and my family you take my breath away and you give me strength.  Thank you for this priceless gift.  I will nurture the memories of this beautiful day forever and will carry it with me through the difficult times ahead.  I am proud of you and privileged to have your support.  This event was organised on short notice, but it gave me great joy to add our, and Namibia’s miles and candles, to those of the world wide campaign.  With your help the first seeds have been sown and who knows what can grow from this by this time next year!

“Thank you Lord for blessing met with so many special people in my life”.

  

PS:  Thank you to my friends and family who were unable to attend the walk, but supported us walking on their own and/or lighting candles.

Thank you Laurette for the beautiful photos!

Sonja

Life is not measured by the number of breaths we take but by the moments that take our breath away. 
Hilary Cooper

WORLD MSA DAY

 

2 Days to Walking with Sonja and Karin

Karin blogging here ... 2 days to World MSA Day and I can't wait for Walking a mile with Sonja and friends on Monday.

A few of us will walk from the Putt-Putt course in the Strand to Casa del Sol, where we will have coffee, light a candle and then stroll back.  Distance is 1.2 km and just perfect for a stroll with my friend.  

Friends can take turns to wheel Sonja and no doubt she will be entertained all the way.

Vasbyt Sissi - ons gaan lekker stap. xx

map walk

MSA DAY IN NAMIBIA

MSA DAY IN NAMIBIA ON 1 OCTOBER

Gesina Spangenberg, my dear friend in Swakopmund, Namibia, organised a walk there.  Because of work on Monday, they went ahead and at 7.30 this morning they walked 5 km along the beach in the rain.

WELL DONE EN THANK YOU FOR YOUR SUPPORT!

You are now leading this race, but we are planning to catch up on Monday!

MSA DAG REEDS OP 1 OKTOBER IN NAMIBIE

My liewe vriendin, Gesina Spangenberg van Swakopmund, het ‘n stap vir MSA gereël, wat weens almal se werkverpligtinge reeds vanoggend plaas gevind het.

Hulle het vanoggend 7.30 in ‘n motreëntjie 5 km langs die pragtige kus van Swakopmund gestap.

WEL GEDAAN EN BAIE DANKIE VIR JULLE ONDERSTEUNING!

Julle is ons nou voor, maar Maandag gaan ons probeer inhaal!

ENCOUNTERS WITH LIONS

INTRODUCTION TO MY STOR

This week my creative and inspiring friend, Karin, produced this beautiful blog for us to tell our story as our journey with MSA progresses.  On the home page you will see that she has also come up with a nickname for MSA, MufaSA, after the Great King in The Lion King.  I’m not sure that this analogy with the friendly and wise old lion of this tale best describes the ugly beast of MSA, but the letters fit nicely!  She also mentioned, jokingly, that lions no longer roam the streets of my hometown.  But all this talk on lions reminded me that I have indeed had an encounter with lions...

It was 2008 and my new year’s resolution was to realise my long-time dream of doing a hiking trip in the Kruger National Park.  After having convinced a couple of friends to join us, I excitedly started to plan this trip for eight hikers, to take place in April.  But by March I was worried enough by my loss of balance to warrant a visit to the neurologist.  He sent me for MRI scans as well as virtually every blood test in the book, and I started doubting my ability to go on this hike.  By the time the neurologist phoned with the news that the MRI’s and test results were clear, but that “there is a very slight chance that it might be something like Parkinson’s”, I had even more doubts.  Then the news that the other six hikers had cancelled left me very discouraged.

Johnny and I discussed this for a couple days, and with his encouragement, we decided that we would go ahead and allow Sanparks to add whomever they could find to make up a group of eight (hiking camps accommodates eight people).  Once again excited, I went ahead with the travel plans and making my customary packing lists.  Needing a book to take along for siesta time, I found Tuesdays with Morrie by Mitch Albom and happily ticked that off the list.

On our first overnight stop en route to KNP I started reading Morrie’s story, only to be overwhelmed by fear because of the similarities with whatever was happening to me. But I immediately told myself not to let my imagination get ahead of me.

On our arrival at KNP we were informed that nobody else had booked for the trip and that we now had the exclusive use of the camp, cook, tracker and guide.  We left our car at the main camp and loaded all our gear into their trailer, filled to the brim with provisions for the three days, and we drove off into the bush for our adventure in their ‘’gameviewer’’ vehicle.

The boma

The first evening we spent sitting under the boma, the awestruck audience of a spectacular thunderstorm, wondering whether the weather would permit us to hike the next morning.  But early the next morning the cook woke us up with a bowl of hot water for washing and an invitation to have a quick cup of the coffee already brewing on the fire, before we set off for a walk in the bush.  Having expected the tracker, Opa, to walk in front and the guide, Kennit, to cover our back, we were somewhat surprised that both guys, armed with guns, walked in front, which left Johnny at the back, glancing nervously over his shoulder!

The grass was still high after the summer rains and we hadn’t gone far before Opa jumped sideways out of the game path and the procession jolted to a stop.  Only when our not-bushed-trained eyes came into focus we saw the huge puff adder.  Opa, with bush-trained ears, was alerted by the “puffing’’ sound it made.  Now Johnny had his eyes glued to the ground with occasional glances over his shoulder!  The call of an oxpecker (these birds feed on the ticks on animals) alerted Opa of the near presence of a rhinoceros sleeping behind a bush.  So we grew to trust him, enjoyed the hike, the elephants and other animals we saw, and the wealth of information bestowed on us by Kennit.

Life in the camp was no hardship either!  Snacks were packed for a picnic on the hike, and brunch and a hot shower awaited us upon our return.  The first day ended with a late afternoon game drive and a superb meal under the boma, rather than another hike, because of rain.

Soon after having left camp on the second morning, we came across fresh lion spoor left in the soil softened by the previous night’s rain.  We then began to ascend into a range of hills in the shape of a horseshoe, with a lush valley filling the space between the outcrops.  The four of us walked quietly and on the alert for any movement.  As we came around a bend Kennit held his hand up to stop us and we saw his and Opa’s eyes fixed on something.  He then signalled us to proceed cautiously and as I came past the bush that was blocking our view, my jaw dropped and my eyes popped.  There was a lioness standing on a rock ten metres from us, staring into the valley below, and totally unaware of us!  It was only when Kennit signalled us to get back behind the bush that she picked up on our movement.  That split-second look at us revealed the fear in her eyes before she ran off and disappeared into the bush.  Our tracker and guide then agreed that they had heard more than one lion running off and became even more alert, due the possibility that we might be amidst a pride of lions.

We continued our walk, only to be stopped by Opa soon afterwards, signalling us to be very quiet, as he stood there listening attentively.  He nodded his confirmation that he was hearing lion cubs.  Their agreement to abandon this hike, now threatened by the legendary fierceness with which a lioness will protect her young, was confirmed by Kennit’s words, “we’re out of here!”  We had hardly walked ten steps, when a lion jumped into the path ahead of us, confirming the fact that we were indeed amidst a pride and that were now flanking us on both sides!  We fled up a rock providing a good lookout point, Opa and Kennit excitedly reverting to their native tongue, Shangaan, and telling us to please stay calm, whilst scanning the area with binoculars.

Opa was then left there at the lookout and Kennit escorted us to the top of the hill, the precipice in front of us and the high rocks behind us, affording us some shelter from attacks (hopefully).  He then dug a satellite phone out of his backpack, handed his gun to Johnny, and left us in this eagle’s nest with a panoramic view, assuring us that he’ll be back soon (HOPEFULLY!).  Now anyone who knows Johnny well will tell you that I have a devoted, loyal and compassionate husband, but his one week of training in Dad’s army (folly of our previous government), left him ill- equipped for killing lions and that, true to his loving nature, he was more likely to try and befriend lions with offerings of boerewors (S.A.’s favourite sausage) from our snack pack!

Johnny, Kennit and Opa

Thankfully Kennit returned and he and Opa then proceeded to lead us to safety, pointing out the lions, now sunning themselves, above the path that we had walked earlier.

Back at the camp, our evening around the campfire was filled with many stories of such adventures.

It is in retrospect that I now realise that this other lion, MufaSA has been stalking me since 2007.  MufaSA, you have been feeding on me and have claimed huge parts of my body and although I might not be able to outrun you physically, I will not allow you to feed on my spirit and my soul!

PS;  we walked the Wolhuter trail in the southern part of the Kruger National Park(the park is nearly two million hectares), South Africa and can highly recommend the total experience.

Link to South African National Parks, which includes the Kruger National Park

info on Wolhuter Trail

Where is Tim's Shoe?

Here is the story of Tim's Shoe.  It's a moving story of a shoe that started as a prank on a friend, and has evolved into a magnificent campaign for MSA.  If you can, also visit and join the facebook page for more wonderful news of Tim's Shoe.  

MSA

A touching movie clip about MSA.  Do take the time to watch it.  Its beautiful.

There is this thing - its called MSA

There is this thing! - its called MSA - Multiple System Atrophy.  It seems like there are hardly any other people in South Africa with MSA.  The purpose of this Blog is to create and become part of an awareness campaign in South Africa.  

MSA is a lonely journey - and a journey a patient has difficulty to explain to others so that they can really understand.  We can't cure each other, but I believe we can support each other, reach out to one another, and one day, there will be a cure! 

Let's reach out and become part of the solution.

Sometimes its not so easy to comment on blogs, I know, so visit us on the facebook page.

https://www.facebook.com/pages/MSA-Multiple-System-Atrophy-South-Africa/278167328865814?sk=wall

Come again - please!

'kom Sissi - kom ek stap saam'

(Karin)