MSA MONTH: SOUTH AFRICA’S FIRST FUND RAISING EVENT

Seweweekspoort; from the left, Mari, Charlotte and Gary

 It is most apt that our first fundraising event is happening in March; MSA Month.  My dear friend and fellow patient, Magda Erlank's daughter, Amanda Erlank, has taken the initiative to organise a group of cyclist to dedicate their ride in the annual ARGUS CYCLE TOUR to MSA.  This 109 km tour is the largest timed event of its kind in the world, attracts more than 35 000 cyclist from around the globe, and winds its way around our beautiful Cape Peninsula.  It takes place on the 10^th of March.

Training for a mega event like this requires the discipline to spend many arduous hours in all kinds of weather conditions on their iron horses.  They do this because they can, for us who no longer do it.

Magda, on the right on her recent visit to me, left, with Karin in the middle

Amanda writes that she started cycling 5 years ago for health reasons.  Training for the Argus has transformed her into a healthier and fitter person, physically as well as mentally, and helps her to unwind from daily stress.  Struggling through training is often unpleasant but has taught her much about herself and her inner strength. 

Amanda training on the Dirtopia blue route

When faced with what seem like impossible hills to conquer, thinking of her mother’s impossible journey with MSA gives her the strength to carry on.  When an isolated mountain bike trail takes her to beautiful vistas, she is reminded that her mom can no longer share this with her because of this terrible disease.  Every breathless and torturous step is for her mom, a dynamic woman whom she reckons would have easily beat her in this race ten years ago.

Adri van der Merwe is a contestant from Upington in the beautiful Northern Cape, where hills for training is scarce in the mostly flat landscape.  This seasoned athlete participated in the Ironman race in 2012, swam the Midmar Mile in February, and won a 78 km road race in her hometown last weekend.

Adri on a early morning training session

Adri knows Magda, prays for her daily, so when asked to participate in this race, agreed immediately.  When recently reminded of her pledge she started training more seriously and rises at 5 am to do so in the company of other cyclists from her town.  A lot of sweat and the occasional fall have gone into training for what she regards as a worth while cause.  With her first Argus little more than a week away she is excited and hopes that her training was enough to make it an easy ride.   She is thankful for the privilege of being able to cycle and prays her effort helps our cause.

My therapist, Audrey Mallett, who has done the race many times before, is part of this group as well.  When she popped in today she told me she hasn't had any time to train and intends to wing it on a prayer.  This petite lady is a whole lot tougher than she looks (I have often suffered under her supervision!) and I'm sure she’s quite capable of finishing the race.

Gary and Charlotte taking a break on a recent training session

Zarier Behardien

I hope to bring you more news on these brave cyclists soon:

Amanda Erlank, Abdul Atta, Adri vd Merwe, Anton Titus, Audrey Mallett, Charlotte Kriel, Gary Evans, Maahir Berhardien, Margaretha Steyn, Mari vd Merwe, Michelle van Rooyen, Zarier Behardien.

Thank you Amanda for all the hard work you put in to make this possible. The best of luck and perfect weather on race day to all of you!  Although I can’t be there, I’ll be glued to the TV to cheer for you.  Hopefully those orange shirts will be easy to spot.

Because no research is being done locally, the funds raised were donated to the MSA Trust in UK.

NEUROLOGIST APPOINTMENT

A visit to the neurologist is always an important event for patients with MSA.  In my case this happens once in eight months  For a couple of weeks before the consultation I start getting my questions together, gather information of research and  possible treatments and update my report to him.  What used to be little notes of what I wanted to discuss in the past, has now turned into a little report of  my degeneration since our last consultation and then we discuss what can be done to  help me. 

Firstly the good news; my speech and swallowing abilities remain unaffected and I haven't had any bladder infections so far.  Despite the current hot weather, it’s been months since I've last experienced a fainting episode caused by a drop in blood pressure.

My main area of degeneration has been in my balance, movement and co-ordination.  I tried every possible solution to keep walking, even when it was just a couple of steps with the walker and Johnny holding onto me.  I also tried taking the dopamine earlier to accommodate our early morning walking attempt, but it made no difference.  My feet freeze, I'm unable to control the placement of my left foot, and I have no balance whatsoever.  I can’t be left holding onto the walker for even a couple of seconds.  After a fall in December I realised the risks of trying to walk had become bigger than the benefits.  

I was shocked to observe the deterioration of the co-ordination and speed in my hands when the neurologist did his tests.  This explains why I've been struggling to keep up with things here on the internet.  It takes forever to write the simplest paragraph and being a perfectionist doesn't help. I try to correct every silly little mistake.

Over the last couple of months a new symptom had reared its ugly head; uncontrolled contractures of my left leg, called dystonia. My left shin and foot is permanently bruised from kicking into things and those who help me have to give the kicking leg a wide berth!  Dystonia can be caused by high doses op dopamine.  Dopamine had been the cause of a facial dyskinesia in the past and it disappeared after lowering the dose.  With the dystonia and the fact that the dopamine didn't help me with the walking in mind, he suggested that we slowly start reducing the dose further while keeping a close watch on how this affects me.

The leaning tower of Pisa

No matter how hard I try to straighten up when I sit, I always slump to the one side.  This tilted trunk posture (pisa syndrome) has been the cause of severe and chronic back ache.  Over time I have tried to remedy this by physiotherapy, several types of pain and anti-inflammatory medications, I've tested solid back wheelchairs that can tilt, and the orthotic technician designed and made me special wheelchair cushion.  Lying down has proved to be  the only way to be relieved of this pain, but too much lying down has led to further loss in muscle strength.  The neurologist prescribed anti-inflammatory medication, but also suggested I should consider facet block injections, a procedure where cortisone is injected directly into the problem areas.  I would like to hear if other patients have had success with this treatment for this specific problem.  Getting rid of this pain could improve my quality of life greatly.

He increased the dose of Lyrica for the ever burning pain caused by peripheral neuropathy in my legs and feet.

We also discussed whether intravenous immunoglobulin would be an effective and suitable treatment for MSA.  Although this treatment is used for Guilian-Barré syndrome, it is not a recognised and registered treatment for MSA.  There are some serious risks when taken in high concentrations, like asepticmeningitis and thromboembolic events.  Doctors in S.A. could face serious consequences if they prescribed it for unregistered conditions and things go wrong. The cost of R40 000 plus hospitalisation for a single treatment would not be covered by medical insurance.

I recently read this statement made by a patient on facebook; “Sometimes I do not know how to take all that is going on with my body”.

To me my body is the temporary vehicle for my soul.  Because this is so I am able to look at it objectively, knowing that I will one day leave this rusty, leaky old vessel for something infinitely better.

2 Corinthians 4:16-18

¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

FIGHTING BACK HARDER, WITH HELP

I'm looking forward to my signed photograph from Olympic champion gymnast, Olga Korbut, who has joined our ranks in the fight against MSA

The year started with me resolute to fight back harder. Towards the end of last year my exercise and walking programs petered out, mainly because I had been robbed of confidence by two falls.  The early morning walk with hubby and the walker is no longer possible as the risk of falling had become too big.  All my energy and effort will now be concentrated on other exercises to maintain and regain muscle strength.

I made an appointment with the therapist to come and see me at home as getting to her (or anywhere else) is difficult now.  After our last appointment I also felt that most of the exercises she had done with me in her rooms were either too risky or impossible to do without her assistance.  Friday morning was spent with her reassessing me and adapting the exercises so I can do them safely here at home.  Afterwards I was shaking like a bowl of jelly (Jell-O in USA) and had to lie down for a siesta.  My muscles are weak, fatigue easily and it’s going to take considerable effort and discipline from me to regain some strength.  I have also slowed down to a snail’s pace and I'm finding it difficult to keep up with correspondence and facebook activities etcetera.  To make time for this essential exercise program I’ll sadly have to cut back on time spent on the internet.

Yesterday I read most of Imre George Mailath’s well written and interesting notes as a carer and observer of his wife Jenny.  There are many similarities to my journey, and his following words made me realise that I have to live every day as a gift of God and make use of every opportunity while I can: “The one thing that occurred to me fairly early during those months was that from information I gained from the Web and in the main from support organisations of various neurological conditions was that there is a period when the condition deteriorates fairly slowly and therefore any period that can be regarded as providing a reasonable quality of life must be regarded as paramount and every effort on the part of the carer or carers must be concentrated to ensure that this quality of life endures for as long a time as possible.” 

A facebook post inspired me to keep track of all the good happenings in my life this year.  The idea is to review all of these on Old Year’s eve and give thanks.  Here are some recent good happenings;

A friendly post office official recently phoned looking for me.  He had a Christmas card with no street address and no return address for me and personally delivered it to our door within 30 minutes.  The card came from Anne Burke and her sister Sheila in Ireland.  With the card was a note explaining that they heard about me and MSA from Emilene whom they met during their pilgrimage on the Camino in Spain in 2012.  It was encouraging to hear that they follow my blog, and I felt strengthened by their prayers.  I am still amazed by the contacts made by all who walked the Camino last year and this surprise certainly perked up my week.

Unfortunately the good impression our postal services made on me was short lived when Lily Shih of CURE M.S.A. let me know that the parcel with bracelets and t-shirts she sent to me has been returned to her with a notice that it was unclaimed.  I have been looking out for this parcel for months and never received any notice to claim it.

My Kindle e-reader, a Christmas gift from hubby and son, has arrived.  My boy had done most of what was necessary to start up the Kindle in London before sending it to the couriers.  With his telephonic instructions we connected it to our wireless internet.  It proved easy to handle and I bought and downloaded my first book within minutes.  There are 42 000 free books available at Amazon, so I downloaded a couple of those just for fun.  Reading is an absolute pleasure now that I can set the font and the light to see clearly.

The MSA community now have Olga Korbut helping to create awareness and raising funds. This Olympic Champion gymnast lost her friend and team mate Nikolai Andrianov to MSA in 2011.  During the month of January, all proceeds of her store will be donated to MSA.  I was inspired by the example set by MSA friend, Paul Moreau, to order a signed photograph, featured at the top here, from her website. Supporting her enables her to support us.  Thank you Olga Korbut for joining our ranks and helping us with our fight against this disease!

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/