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.”

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.

http://laurettesphotography.yolasite.com/

http://laurettesphotography.wordpress.com/

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

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/

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’

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.” 

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

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;

http://www.world-msa-day.org/World-MSA-Day/A_MILE_and_A_CANDLE.html

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

 Photos by Laurette's photography