Monday, December 31, 2012

FEEDING THE HYENA





 My dear friend Karin writes such beautiful words of me here in the margin on the right-hand side, comparing me to a lion and giving me the name MufaSA.  Anybody with MSA will however tell you that there are days when you are so afraid of what lies ahead that you feel more like a helpless little mouse than a lion.

As this beast of a disease continues to sneak up like a thieve in the night robbing me of ever more of my body functions, it shows similarities to another beast of prey that often crossed our path on our trips into the wild; the hyena

When camping in remote areas, these opportunistic nocturnal scavengers would often roam just outside the circle of light of our campsite to make their appearance as soon as we put the lights out to retire into our tents.  At some places they were bold enough to appear while we were still up and about.  At first this was very scary, but we soon learned to chase them away by boldly running towards them whilst waving our arms wildly and shouting ‘voetsek’ (Afrikaans for get lost or go away – pronounced ‘footsack’)! 

The spotted hyena, the most common large carnivore in Africa, is a highly successful hunter and scavenger. It is known to have the strongest jaws in the mammal kingdom.  We had to take care to keep refuse and cooking utensils well out of their way and falling asleep around the camp fire or in the open was taboo.  Given the chance they would take a bite at an ear or a foot or any body part conveniently protruding from a tent.  Under those circumstances, without ablution facilities, I did what a girl had to do as quickly as possible while looking out for hyenas over my shoulder.  Imagining the scenario if there had to be hyenas in those uncomfortably exposed moments makes me laugh now!

Although keeping my guard up against the onslaught of MSA by doing my exercises etcetera, it has lately robbed me of what little was left of my ability to walk.  I've been using the wheelchair for almost two years now, but still tried to walk with the walker and Johnny’s help for the therapeutic value it had for my kidneys and bones, even when I could only manage a couple of steps.  This became increasingly difficult and my last desperate attempts to keep this early morning walk going, came to an end when my feet wouldn't move (*) and Johnny left me with the walker for a couple of seconds to get the wheelchair.  Although the wheelchair was only two metres away, my balance is non-existent, my muscles wouldn't hold me upright, and I fell backwards without warning.  (*‘Freezing’, a typical Parkinson's symptom, causes the feet to feel like they’re glued to the floor.  Together with the lack of voluntary coordination of muscle movement and severe balance problems this leads to the inability to walk, although not paralysed).  (Read ‘MSA in a nutshell’).

During a drought two centuries ago the people of Harar in Ethiopia started feeding the hyenas to stop them from sneaking into their village and eating the people.  Their recognition of the needs of their predator prevented further disaster. 

Like the people from Harar, I have made a truce with my hyena.  It seems pointless and causes stress to rage against something I cannot change.  I have familiarised myself with the disease.  I have learned what to expect and where MSA is most likely to attack.  I'm feeding my hyena in many ways; by taking preventative measures against constipation, which was the cause of several hospitalisations for a dear friend.  I am forced to spend more time lying flat on my back or back ache becomes an unmanageable monster.  Keeping cool with the use of air conditioners, hydrated by taking enough fluids, eating salty snacks, are all strategies to prevent my blood pressure from plummeting through the floor. 

True to the nature of this beast and despite all the precautionary measures, the hyena inevitably sneaks up to snatch parts of me.  I will however not allow it to take my spirit and my soul.  Acceptance of my situation enables me to experience the joyful peace of serenity.

I hope that in the coming year my family and friends…and their families and friends will join forces with us to raise awareness as well as funds for research.  I’d love us to beat this beast and shout VOETSEK MSA!

Best wishes for 2013 to all!

“God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and wisdom to know the difference.”


Monday, December 24, 2012

A BEAUTIFUL SCULPTURE




A while back I received one of those emails forwarded from one person to another.  This specific email showed a logger who, with his chainsaw, carves sculptures of animals out of logs. I was filled with amazement that he could look at a rough log, one that looks exactly like millions of other logs, to see the potential beauty inside it, and then proceed to carve it out.

This made me think my life and this physical as well as spiritual journey the disease, MSA, has taken me on.  The following questions came to mind; does God see potential in me?  Was MSA the chainsaw needed to reveal this potential?  Does God allow diseases and other misfortunes to happen in order for us to grow spiritually?

I don't have all the answers yet. Hopefully this journey will teach me more as it happens.  But I do know this; I might never have experienced spiritual growth if MSA didn't happen to me.  The 'busy' life I led before was filled with trivialities, often with good intentions which never realized. I was on the run to nowhere, too distracted by the demands of my lifestyle.

The disease forced me to slow down and allowed me time for introspection and I didn't like what I saw.  Did God grant me this opportunity to change?

Although I can expect physical degeneration, I am excited by the prospect of spiritual growth.  In the forest I now grow, the Keeper knows the name of every tree and provides the fertilizer for growth.  God doesn't only see the forest, but every individual tree.  He doesn't see the crookedness of the trees, or the roughness of the logs, He sees the beauty inside you and me.  If we allow Him, He will carve a glorious and unique sculpture out of each of us.





James 1:2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything.

Psalm 33:13-15
“The Lord looks from Heaven.  He looks on all the inhabitants of the earth; He fashions their hearts individually; He considers all their works.” 

Thank you for allowing me the use of your beautiful photos Laurette.

Tuesday, December 11, 2012

GETTING NAKED IN FRONT OF STRANGERS


Lilian with me - Dec 2010

As the disease progressed over the last couple of years and I started losing my ability to do housework, we employed my formerly part-time house worker as a full time housekeeper/cook/carer.  Lilian now takes great pride in her newly acquired cooking skills and she lovingly cares for me during the week. Nowadays this includes helping me in the bathroom and getting dressed.

My 64 year old husband, Johnny, runs his business in Stellenbosch, does all the shopping and cares for me after hours and on weekends.

On occasions when Lilian is on leave or ill I've made use of a carer supplied by a nursing service.  When Lilian phoned early this morning to let me know that she’s ill, I immediately contacted them.  Unfortunately the carer I previously used was not available today, and they had to send someone who knows nothing about me, MSA, or my household.  Johnny had several appointments and couldn't wait for the substitute carer to arrive to show her the ropes. 

When she arrived the nurse introduced her to me.  I showed her my bell and told her that I would ring when I needed her.  Nothing too complicated I thought, until I needed her and rang…and rang…and rang…getting no response from her where she sat reading a magazine.  Not a good start!  After I found out that she was introduced to me by a wrong name, I started to doubt whether the nursing service knew anything about her or her abilities to care for disabled patients.

I wonder how others in similar circumstances handle situations like this?  Do I need to write a manual on “How to care for Sonja” so it can be handed to the uninitiated when they come into my home?  Are my expectations to high?   

When I was diagnosed the idea of someone caring for my most intimate needs some time in the future freaked me out.  At that stage I even disliked showering and getting dressed at the gym. 

Getting naked in front of strangers is now no longer an issue.  Who knows what I could've done if I was able to combine this new found ability with my previous ability to dance! ;)

Photo supplied by Laurette's photography


Monday, November 19, 2012

GRACE AND DIGNITY


 Laurette's photography


The first year after being diagnosed with MSA I tried to avoid reading about the disease.  The symptoms I could expect in the future were too dreadful to deal with and I needed time to do that.

After the first year I slowly, tentatively made contact with other patients and got involved in awareness campaigns.  This mostly had a positive effect on me.  Seeing these patients and their families cope with the many and varied symptoms of MSA gave me hope that we would be able to do the same.

I now have contact with many patients who are at a more advanced stage than me.  In the ‘closed group’ discussions on facebook I get tips which will come in handy when I have speech and swallow problems etcetera in the future.  I also get to see and hear about the worst side of the disease; bladder and bowel incontinence, severe breathing problems and death.  Death, I’ve learnt, can happen anything from 1 to 12 years after diagnosis.  There is no common pattern of degeneration; unlike me, some patients can still walk, but unlike many of them, I can still talk.

Some of my friends here in South Africa are bedridden, some are in care facilities, some have permanent catheters and one has passed away.

It is easy to lose oneself in the quagmire of all these symptoms and become depressed.  The fear of losing my dignity in the future sometimes overwhelmed me, but now that I need help with functions like getting dressed etcetera, and have to deal with the loss of privacy, I realise that dignity isn't necessarily what I thought it to be. 

I have to aspire to a new kind of dignity; a spiritual dignity that transcends physical dignity.  As I slowly take leave of my once graceful body, I hope and pray to acquire an everlasting spiritual gracefulness.



A rose after the petals have dropped - Laurette's Photography



As the petals of the rose are dropping to bare the last remains of the flower, the rose hip, I’ve come realise the importance of the fruitfulness of this inner core for the survival and continuance of the plant as a whole.

Gal 5:22
But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness

My thanks to my dear friend Laurette for allowing me to use her beautiful photos.
http://laurettesphotography.wordpress.com/
http://laurettesphotography.yolasite.com/

Sunday, October 21, 2012

EVERYBODY LOVES A WINNER...




These words from the song ‘Maybe this time’, sang by Liza Minnelli in ‘Cabaret’, made me think of the recent Paralympic Games in London and the many heroes of this glorious event.  All of them competed despite great physical challenges.  Some of them, like Oscar Pistorius, won medals and became world famous, and loved by millions.   

If you’ve been an internet user for a while, you would no doubt have seen video clips of the brave Nic Vujicic, who happily and joyously lives his life without limbs, and inspires others with his talks and books.  He has most certainly earned his place in many hearts all over the world.  

Here in South Africa we also have a much admired Afrikaans speaking radio presenter on radio RSG, Martelize Brink, who, after a viral disease in her teens, lost the use of her legs.  She also acts as inspirational speaker and travels the world despite her physical challenges.  This special lady daily takes her place in our households and our hearts.

I too admire all these challenged athletes and people and spent hours and days watching these winners perform at the Paralympics.  

It would however be unfair to compare Multiple System Atrophy (MSA) patients with these people and have similar expectations of them.  To compete in the different classes at the Paralympic Games, these athletes all had to be assessed, and therefore their conditions had to be stable.  They have had time to adapt to their disabilities, some of them a lifetime, and although it’s challenging, they can progress from there.  MSA is a degenerative disease that continually causes changes in one’s condition as it progresses.  

Another big difference is that these people are all, besides their disabilities, clinically healthy.  MSA is a complicated disease which not only disables the patients, but also leaves them ill.  Patients often need to be hospitalized with bladder and kidney infections, constipation, breathing problems and respiratory infections etc.  For this reason there is no class for athletes with degenerative diseases, like Parkinson’s or MSA, to compete in the Paralympics.

MSA patients daily have to face the devastation caused by the disease.  We continually have to adjust to the loss of ever more of our abilities, like bladder and bowel control, severe problems with swallowing and complete loss of speech, backache, neuralgic pain caused by peripheral neuropathy, and fainting episodes caused by severe drops in blood pressure.

Dear friends I hope you understand that the nature of the beast we are fighting doesn’t always allow us to live up to your expectations, however much we’d like to.

We are facing a fight we cannot win.  There are no medals. 

The MSA community all over the world are filled with supportive people who strive towards a common goal. We stand united in this fight; to create awareness and understanding for the disease and to raise funds for research. 

“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain”. C.S. Lewis

The only real failure is the failure not to try and the measure of success is how we cope with disappointment.  We get up in the morning, we do our best, nothing else matters. From ‘Best Exotic Marigold Hotel’


Monday, October 8, 2012

THE LONG AND THE SHORT OF MSA DAY 2012



This time of the year the weather is unpredictable and, like last year, a close eye was kept on weather reports the week before the walk.  Although the sky was filled with dark clouds on Wednesday morning, Helderberg was clear of clouds, and according to local belief, it would not rain.  I'm happy to report that the locals were right; it didn't rain until much later that day.  

I knew that the hikers who walked the Camino would not be happy to walk 2 kilometres on MSA Day, therefore we had two walks this year; a 6 km as well as a 2 km walk.  My friend, Susan, awaited the arrival of the first group and they departed at 9.30 to walk along the beach-front in the direction of Gordon’s Bay.   


Me and Johnny

My husband, Johnny, took a day’s leave from work to accompany me. On our arrival some friends were already having coffee in the foyer of the Hibernian Towers, and we huddled there for a while to keep out of the wind.  


As I didn’t want to miss the return of the first group, we went out to wait for them.  When they arrived we posed for a group photo before we set off along the beach front towards the water-slide.  I enjoyed chatting to the all the different ‘drivers’ of my wheelchair and the turning point came much too soon. 




Karin, who has the ability to organise an army, had little trouble to persuade Casa del Sol to open their doors earlier than normal to accommodate us. My thanks to Mike Rich and his kind and competent staff who, like last year, were excellent hosts and kept coffees and cappuccino's coming.  When we walked in Susan and her helpers had already lit the 100 candles to create the ambience for a morning filled with love.




When I attempted to make a speech last year, I was out-performed by the tremors in my left leg. This year I wrote the speech, but decided to skip the stress and asked a friend to deliver it for me.  Hugh Holtzhausen did a most excellent job of conveying the following;

“Welcome to the second year of this awareness campaign for MSA.  We are part of the worldwide project ‘WALK A MILE BURN A CANDLE' that is happening around the globe on 3 October.  The campaign is the brainchild of a brave Belgian lady, Ritje Schouppe-Moons, who lost her husband to the disease. This year’s aim is to get enough miles to cover the distance around the globe.

Ritje’s favourite quote is these words by John F Kennedy; “One person can make a difference, and everyone should try.” So my sincerest thanks to all of you who came out today to help us make a difference and achieve our goals. I am aware that some of you have travelled some distance to be here today, I welcome all the newcomers, and I appreciate the loyal support of those who are here for the second time.

Over the past year I have met many other patients through facebook.  I’ve also had the privilege to meet a couple here in South Africa, some of them in person.  One of these patients and her family lives here in the Strand.  Thank you to her husband, Lionel, who joined us today to represent the McDonald family.  We wish you, Reinette and your family strength in your battle with MSA.

This year I have been blessed to be a small part of a great project when my friends walked the Camino in Spain for MSA.  Between the five of them they hiked the total of 3200 km – a huge contribution towards achieving our goal this year.  Three of them came out to do some more walking with us today.  Thank you to Susan Albertyn, Emilene Ferreira and Eddie Waring.  Eddie only recently returned from his extended holiday and this is the first opportunity I have to thank him with a gift. Thank you to my friend, Frans Albertyn, who kindly sponsored this gift for Eddie.

Behind every woman there is a man…as well as a couple of women!  Thank you to my dear husband, Johnny, for his loyal and patient support.  I am happy that he could spend the day with me.

Thank you to my loyal and dedicated friends, Karin and Susan, without whose help I would be lost. They helped me to organise this event, and behind the scenes they also smooth over many of the rough edges in my life.  And believe me, with MSA there’s plenty of rough edges!  Everything I do is made possible for me by the framework of supportive love formed by my husband, family and friends.

Ermanno, Elize, Karin Susan, Annemarie

Laurette I greatly appreciate your willingness to always photograph all the happenings in my life.  I am very proud of the professional appearance your beautiful photos lend to my blog and facebook pages.

Me and Laurette (photo Bev Simpson Hurst)

I’m excited to tell you about the first fundraising for MSA research next year.  Amanda Erlank, the daughter of MSA patient, Magda Erlank, is organising a group of cyclist to participate in the Argus cycle tour in March.  Please share this news with your cycling friends and have them contact us for the details.

Meeting other patients also made me more aware of their daily battle with the disease.  For their sakes, and with your help, I have to persevere in creating awareness and raising funds until a cure is found. 

My thanks to the Lord for the strength and courage he gives me daily, and for blessing me with all of you who support me in this dream…to find a cure for MSA.

One last request; please take one of our flyers, share it with a friend in the coming week, tell somebody about MSA, so we can double the amount of people reached by this awareness campaign.” 


Ladies in red - this wasn't planned!; Angie, Elize, Karin, Marlene and Lida (photo Bev Simpson Hurst)

After Hugh’s speech Karin Holtzhausen took it upon herself to convey the realities of dealing with MSA in my life, by reading her written explanation to someone else.  My dear friend needed a couple of tissues to get her through that speech, and her words deeply touched others as well.  One such person afterwards commented that she had no idea that this was what life is like for me now.  I find it difficult to tell people about the exact impact of MSA without letting it sound like a pity party and thus I'm thankful to her for handling this with such sensitivity.  Not having the necessary knowledge of my capabilities, often leads to others having expectations that I can no longer fulfil.

Coffee was served while we chatted away and strengthened the bonds of friendships. 

Early evening Johnny lit the fire for a braai (South African barbecue) and my friends joined us for the ‘lighting of the candles’ ceremony.  I could never resist candles and candle holders, and through the years have acquired quite a collection.  When Karin and Susan gathered them from all over my house, even I was amazed.  Several attempts to count them resulted in different totals (too much wine?!), but in the end we agreed that it was somewhere between 50 – 60 candles.

‘A candle loses none of its brightness when lighting another candle’


That amount of candles, when lit, created a sacred ambience and I spent a quiet moment thinking of my friends who are battling this disease, as well as those families who have lost their loved ones to MSA.

MSA Day was busy, and, although it left me physically tired, I was filled with hope by the supportive love of family, friends, and now also friends of friends.  May the little fire, started by us last year, be blessed and continue to grow in the years to come.


Thank you to Laurette van der Merwe and Bev Simpson Hurst for the photography



Friday, September 14, 2012

WALK A MILE WITH SONJA


WALK A MILE WITH SONJA - WORLD MSA DAY 3 OCTOBER 2012

PUBLIC EVENT BY KARIN HOLTZHAUSEN AND SONJA VAN RHYN

Last year a few of us walked with Sonja at Strand Beach to Casa del Sol.  Please set this morning aside and join us on this World Awareness Day…


My friend Sonja has Multiple System Atrophy, an incurable and rare disease. What is Multiple System Atrophy?



Multiple System Atrophy (MSA)* is a progressive brain disorder caused by loss of nerve cells in specific areas of the brain. This loss causes problems with movement, balance and autonomic functions of the body. (Autonomic functions are body functions that occur automatically, such as bladder control, blood pressure etc.)



Read MSA in a nutshell for more details.

DETAILS:
There will be two walking categories / groups; a longer as well as a shorter walk.  Both groups will gather at the beach front in front of Casa del Sol. 



Times:
Group 1: 9.15 for 9.30 – this group will depart from Casa del Sol and walk towards Greenways and back, where they will join Group 2 and walk to the supertube and back.  Susan Albertyn will be waiting there to guide you in the right direction for this 6 km walk.

Group 2: 10.00 for 10.15 – this group (with Karin & Sonja) will wait for group 1 at Casa del Sol, and join them to walk to the supertube and back to cover a distance of 2.2 km.




Susan  Albertyn with her grandson, Neil, at last year's walk

On our return we will have coffee and light candles at Casa del Sol until 12.00 pm.




Casa del Sol, Hibernian Towers, Beach Road, Strand

The sum total of kilometres walked will be added to the world wide awareness campaign for MSA;

Please come, bring a friend, and let us know how many will be attending.  Also indicate which group you will be joining.



Sunday, September 2, 2012

FOOT PRINTS IN THE SAND

Our beautiful beach in the Strand captured at sunset by Douwleen Bredenhann



6 September 2012.  Exactly 2 years ago I was diagnosed with Multiple System Atrophy.  Over the last two years we have been forced to adapt to a life very different from the one we previously lived.  A life that excludes us from visiting most of the homes of our friends and family, allows very little of our previous passions like travelling, cooking a meal for my family, entertaining friends, pottering in the garden, working out at the gym, theatre…and the list goes on.

I try to handle all of this with grace, encouraging my friends and family to go on trips, celebrate occasions and attend concerts.  They are entitled to live life to its fullest and need not feel guilty because when we are unable to participate.  Fortunately we were privileged to travel a lot before MSA struck, and now I love going through our photo library, reminiscing about the many happy trips and sharing my photos with my facebook friends.



Happy memories: August 2007,  a good year for flowers in the Biedouw valley and Nieuwoudtville

It is in my nature to always show my positive side and hide the negative side from most of those who share my life.  Sometimes this contributes to a false image of me and my abilities.  This is my entirely own doing and I confess that reporting honestly about the ugliness of MSA is hard for me to do.  Some brutal honesty is needed to enable others to truly understand how I live now, and what it takes to get to that state where I’m dressed, coiffed, with lipstick and a smile, and sitting opposite them in a coffee shop ready for a chat.

Sometimes I unexpectedly yearn for the freedom of those days when I went about unencumbered by the wheelchair.  One such occasion was when I recently saw a photo of foot prints in the sand of our beach.  I didn’t expect the tears that came when I realised that I, who often walked kilometres in the early morning on this beach, would never feel the soft sand under my feet again.  I’ll have to be content with the beautiful photo album of our beach made by an acquaintance.  That is exactly what I did, for happiness can not be found anywhere but inside ourselves.  This attitude enabled me to enjoy the rest of her album and appreciate the fact that she brought the beach to me through her photos.


Foot prints in the sand  (photo Douwleen Briedenhann)

When a MSA friend recently asked me how I cope with the many losses that come with the disease, I answered that I try to concentrate on what I can do instead of what I can’t do.  That enables me to feel like a winner instead of a loser.

I’ll always try to be positive, to dig deep for my inherent happiness. But being positive is a transient state not always achievable.  I am only human and sometimes things happen that make me forget my own philosophies.  It is not easy to hear friends planning weekends away and I always feel guilty that my husband is excluded because of me. I spent days going over the many obstacles of long journeys to destinations not geared for my disabilities, but fail to come up with the necessary solutions so we can join them.  At such times I do feel like a loser. 



Last week I once again experienced a sudden, dramatic drop in blood pressure.  I was in the recliner when images and sounds started fading out and I started fainting.  Despite the current cold weather my back was wet with perspiration and I felt nauseas.  Johnny panicked and rushed off to fetch a damp face cloth to wipe my face.  Once everything came back into focus, he helped me out of my jacket and attached the blood pressure monitor.  The reading was 67/43.  Although this sometimes happened in summer, this was the first time it occurred in winter.  After some thought of what could’ve brought this on, I realised this was the ugly monster, MSA, showing its fangs: 



Low blood pressure due to nervous system damage (multiple system atrophy with orthostatic hypotension).  This rare disorder causes progressive damage to the autonomic nervous system, which controls involuntary functions such as blood pressure, heart rate, breathing and digestion. Although this condition can be associated with muscle tremors, slowed movement, problems with coordination and speech, and incontinence, its main characteristic is severe orthostatic hypotension in combination with very high blood pressure when lying down.”

To try and fix every symptom with a pill is not always possible, as medication always come at a price, not only in monetary value, but most importantly, in side effects. Finding the right balance is important.  Last year I was taking so much dopamine that it caused a facial tic (dyskinesia).  When the dopamine was reduced that problem was solved, and as a bonus I now sleep better.  On the other side my movement and the tremors worsened because of this reduction, and I’m as stiff as a plank during the night.  Overall  I cope better with things as they are now.  I disregarded the neurologist suggestion to take halve a tablet of dopamine during the night for the stiffness, as doing so would awake me completely and I would most probably not fall asleep again.


When I recently had the flu and a secondary respiratory track infection, the doctor firstly prescribed anti-inflammatory painkillers for the fever and aches, and later cortisone for the persistent cough.  Both of these medications helped for my chronic back pain.  As a short term solution these drugs work wonders, but on the long term I know the side effects would be severe.  So for now I have to be satisfied with lying down when sitting gets to painful, and not to push my body past the point where I can think of nothing else but the pain.

During a recent consultation with the neurologist who attends to me, he stressed the importance of creating awareness for Multiple System Atrophy in South Africa.  There are less than 70 neurologists in this country, all of them booked months ahead, and over worked.  Others in the medical and caring profession often have little or no knowledge of this rare disease.  Awareness here can lead to earlier diagnosis, better treatment, care and understanding of the disease and the patients. 


Sunset in the Strand (Douwleen Briedenhann)


Although we haven’t planned exactly how we are going to do things on 3 October this year, I am hoping that more people will join us for our walk on MSA DAY.  Don’t underestimate the hope you bring by showing that you care.  I am looking forward to you joining me on 3 October, when you can leave your foot prints in the sand of our beach.










Tuesday, August 28, 2012

THE ARGUS FOR MSA





When Karin and I started the facebook page for MSA in South Africa, Magda Erlank was the first patient to contact us.  We have become MSA buddies since then.  A couple of weeks ago her daughter, Amanda, invited us to a birthday party for Magda, where I was privileged to meet the friendly Erlank family.


The Erlanks; Linda, Hennie and Amanda


Magda was initially diagnosed with Parkinson’s in 2005 and then with MSA (Multiple System Atrophy) in 2009.

Me and Magda

Amanda, with the help of her sister, Linda, has taken the initiative to organise a group of cyclists to participate in the annual ARGUS CYCLE TOUR.  This 109 km tour is the largest timed event in the world, attracting more than 35 000 cyclist from around the globe.  The well organised tour winds its way around the beautiful scenery of the Cape Peninsula and takes place in March every year.

As a family the Erlanks have first hand experience of the general lack of knowledge in the medical and care services of MSA.  This tour will firstly serve to create awareness, and equally important, to raise funds for research.

Amanda invites cyclist to dedicate their ride in the 2013 ARGUS to MSA.  The cost would be a little more than the normal entry fee, but will include a cycle top, as well as a contribution to http://www.msatrust.org.uk/ .  There is currently no treatment to stop the progression, or a cure for this disease.  Your contribution will go for research in this field. 

As no research is being done in South Africa, the cycle shirt will bear the logo of this UK based trust. 



The package is as follow:

Entry
R500
Charity
R200
Cycle top (Rapid Sport)
(optional
- but please remember we are trying to raise awareness)
R400
TOTAL
R700
R1100 (incl. top)

The Argus is famous for its carnival atmosphere and offers a unique experience for the participants.  It will take place on the 10th March 2013.

Please consider it carefully and remember “A burden shared is a burden halved”.
We are riding so that people can start minding.


To register a group Amanda needs to hear from you before 22 SEPTEMBER 2012.  Please FORWARD this invitation to your friends.  



CONTACTS:

Amanda Erlank
083 444 3735

and

Linda Erlank
079 2755 100







Thursday, August 23, 2012

3200 KM LATER!





The Camino has been a very positive experience for me and reporting on the progress of the hikers kept me busy and filled my days with joy.  As they returned the stories of their many wonderful experiences started to unfold, and I was overwhelmed by hundreds of photos. It has been a life changing experience for them that has touched them in many and different ways.

Eddie Waring hiked 900 km from St Jean Pied de Port in France, past Santiago to Finisterre on the north west coast of Spain.  Emilene Ferreira hiked 800 km from St Jean to Santiago.  Susan Albertyn, Esther Nieder-Heitmann and Gerda de Villiers started their pilgrimage at Burgos, bus-hopped a 100 km before Leon, but hiked the extra 100 km from Santiago to end at Finisterre.  Each of them completed 500 km.  And the grand total walked by the five hikers is… drum roll here please… 3200 km!  I will be adding this with great pride and joy to this years ‘A MILE AND A CANDLE FOR MSA’ project.

Susan, Gerda, Nancy Powers and Esther


They have made friends on The Way, some of which have been in contact with me since. One such person, Nancy Hill Powers left a message on our MSA facebook page saying that she admired the conviction of my friends, and inspired by them, she wrote about their encounter on her blog.

The tag, here on Gerda's backpack

The tags that the hikers attached to their backpacks drew the attention of fellow hikers on numerous occasions.  They’d notice the tag one a hiker, and then days later on another hiker at a different location.  Questions followed that created opportunities for our hikers to talk about MSA and hand out their mini flyers.  At some stage they were questioned by a group of school children.  At other times they shared their story of our friendship on a more intimate level whilst spending a quiet hour or two walking alongside another pilgrim. 

Our friend, Ermanno Aiello, author of the book ‘Forever a Pilgrim’, and his lovely wife Lia, invited all who were involved with this project to a post-Camino get together at the restaurant on Vergelegen, one of the beautiful and historic wine estates in our area.  Although Eddie hasn’t returned from his travels, and Gerda had another engagement, the rest of us spent an unforgettable morning together.  Many heart warming stories were told, the food was great, and the people were extraordinary.  Thank you for this wonderful treat Ermanno and Lia. 


At the back; Frans Albertyn, Jan and Esther Nieder-Heitmann, Oscar Ferreira, Johnny van Rhyn, Lia and Ermanno Aiello, Emilene Ferreira, Hugh Holtzhausen. Front; Susan Albertyn, me, Karin Holtzhausen

Although this wonderful experience as come to an end, I suspect that we will be talking Camino stories for some time to come.  I am also looking forward to the promise of a typical Spanish pilgrim’s meal here at my home in the very near future.  

Something so fulfilling naturally leaves quite a void when it draws to an end…but MSA Day is coming up soon...and there is some talk of an exciting project next year...


Some of the hearts seen on the Camino by Susan



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