CARER IN TRAINING

Me and Lilian 2010, photo by Laurette's photography

After a recent fiasco when the nursing services forgot to organise a substitute carer for me, we decided to look at other options.

A local service, Strand Dienssentrum, was recommended to us and Karin went to investigate.  This service centre is situated around the corner from us and is run without profit for the community.  Karin came back very impressed with what they had to offer; a tea garden, daily meals which can be delivered, a hairdresser, foot care, transport to shops, and a nursing/caring service. 

We made an appointment and the nurse who runs the service came to see us to discuss my current needs and what the options were to run my caring more seamless.  The option we all liked best was to send my current housekeeper/cook/unofficial carer on a carer training course.  During the time she is in training one or two other carers can then be trained to take care of me.  They can then serve as substitutes when Lilian is ill or on leave.

Lilian the cook in action

Lilian, who is very proud of her newly acquired cooking skills (taught my moi), was very keen to further her education to be trained as a carer.  I was very lucky to get Angie, who cared for a local MSA patient for 3 years, as a substitute.  She was shown the ropes by Lilian before her course started to make the transition as easy and stress free as possible for me.

Lilian, who still helps out on Saturday mornings, came in beaming with pride with the good results of her first test.  The course is in English, which is a bit of a problem for this dominantly Afrikaans speaking lady, so she left armed with my Afrikaans/English dictionary to help with translations.  Her uniforms are hanging ready for when she starts the practical side of her training at a retirement home soon.  In a couple of weeks I'll catch her pride smile on camera when she walks in here fully trained and in uniform.

Although Angie is taking good care of me, her cooking skills are not so hot.  Because of my back problem I am no longer able to sit for long stretches in the kitchen to train and supervise her.  Until Lilian’s return we’ll have to make do with ready cooked meals from Woolies, depend on the occasional pizza delivered by Mr Delivery, meals cooked by our son on weekends, and braais (barbecues) by hubby and friends.  I think we’ll manage!

OUR MSA TEAM AT THE ARGUS CYCLE TOUR

Here at last are the photos of our MSA Cycle team who had completed the Argus Cycle Tour successfully.  The past month has been a trial and error struggle to find the right medication for my ever painful back and this has kept me from sitting at the pc for the long stretches of time needed for blogging.

All fresh and eager to start are: left front to back; Mari, Michelle, Gary, Zarier, Maahir. Right front to back; Margarheta, Amanda, Charlotte, Adri:

 

After many months of hard training, and I suspect some butterflies in the tummies, they could hardly wait to be on their way.  Seen here at the back from the left; Anton, Maahir, Zarier, Amanda, Charlotte, Gary.  Front, left to right; Michelle, Adri, Mari;

Amand Erlank, the organiser of this group, and Adri van der Merwe;

Gary and Charlotte;

The Behardien brothers, Maahir and Zarier;

On their way with food for the road!  In the top left is Abdul and on the right Gary.

Amanda and Mari taking the turn;

Amanda and Charlotte

Congratulations to our team with a successful Argus tour!  I dare to hope this will become an annual event!  After 109 km at the finish are; Mari, Amanda, Charlotte and Gary.

And some great times too! 

CONTESTANT	RACE NUMBER	TIMES
Amanda Erlank	53019	6:25:32
Mari vd Merwe	53020	6:25:33
Gary Evans	41162	6:25:32
Charlotte Kriel	53200	6:25:30
Adri vd Merwe	53441	4:11:31
Zarier Behardien	53135	5:32:02
Abdul Atta	53234	4:45:00
Margaretha Steyn	53184	6:07:17
Anton Titus	53292	5:28:49
Michelle van Rooyen	53381	05:59:57
Maahir Behardien	465228	06:22:26

CONTESTANT

RACE NUMBER

TIMES

Amanda Erlank

53019

6:25:32

Mari vd Merwe

53020

6:25:33

Gary Evans

41162

6:25:32

Charlotte Kriel

53200

6:25:30

Adri vd Merwe

53441

4:11:31

Zarier Behardien

53135

5:32:02

Abdul Atta

53234

4:45:00

Margaretha Steyn

53184

6:07:17

Anton Titus

53292

5:28:49

Michelle van Rooyen

53381

05:59:57

Maahir Behardien

465228

06:22:26

THE LAST PREPARATIONS FOR THE ARGUS CYCLE TOUR

Here in the Cape hardly any conversation goes by without a discussion of the ARGUS CYCLE TOUR.  You don’t have the drive far before running into cyclists doing their last training at all hours of the day.  The weather forecasts are being studied and best diets and drinks to take before and during the race are being discussed. 

One our MSA TEAM cyclists, Gary Evans, wrote the following to give us an insight into a recent early morning training session;

“Woken by the alarm at 5 am on a Saturday morning is not the way to wake up in a happy and stimulating mood, but the thought of training for the 109 km Argus road race and riding for MSA is enough to get anybody out of bed in a hurry…..

Bicycles on the car-rack, energy bars and juice packed, we leave for Delvera wine estate near Stellenbosch to cycle the Dirtopia route.

The day is dawning, with the sun peaking behind the mountains and the silence in the car on the way there tells a story of tired bodies and tired legs. We unpack the bikes and head out into the mountains.

The energy and enthusiasm comes back the further we ride and the saddle starts to feel like the lounge chair, legs pumping the pedals, and we reach our first drink-stop. The view is awesome and getting out of bed early is a distant memory.

The fresh air is our “drug” for the day.

We rode 12 km, but climbed 534m. Great strength training for us novices, and as we returned to the car the thoughts of a coffee and a muffin were in most our minds.  Isn't that what we get out of bed for?”

Thank you Gary, this made me realize how much dedication and perseverance goes into training for a race like this.

Traffic on all main routes towards the Cape will increase over the next couple of days, with many vehicles coming from all over the country, all with loaded tell-tale bicycle racks.  Airport personnel will have there hands full dealing with boxed bicycles that need to be reunited with owners.  Restaurants and guest houses will be filled with excited cyclists awaiting race day with trepidation.

Organising a race of this magnitude (an expected 35 000 cyclists) takes expert planning and Cape Town will come to stand still on Sunday 10th  March to accommodate all the participants and the spectators.  Physiotherapists will be on hand to treat strained muscles and cramps.  First aide personnel and doctors will stand by for more serious injuries and ailments.  Water points along the route need ample amounts of water, coke and ice, with enough volunteers to keep the race running smoothly, eliminating unnecessary bottle neck delays.

Amanda Erlank, the organiser of the MSA CYCLE TEAM, and the rest of the team, has been invited to the Woolworths hospitality tent at the finish where they will be pampered and spoilt after the gruelling race.

The funds raised were donated to the MSA Trust in UK, and Amanda received the following note from them;

“Dear Amanda,

I just wanted to drop you a line to thank you for your kind donation of £180 to the MSA Trust, in aid of the South Africa Argus cycle tour…it sounds fantastic!

As you are aware, as a small charity we rely entirely on voluntary donations to continue our vital work, supporting all those affected by the devastating disease MSA. Your generosity will enable us to continue growing our support group services, expand our specialist nurse programme, and reach more people touched by MSA. Thank you.

Please do not hesitate to contact me should you require any further information on our work. 

With best wishes,

Katie”

It’s heart warming to know that this team’s effort is recognised and will make a difference to the lives of patients.

The race begins at the Cape Town Civic Centre in Hertzog Boulevard. Depart from the N2 and M3 and follow the False Bay coast past the entrance to Cape Point, then the Atlantic coast and the Chapman's Peak road to the Cape Town Stadium. 

Our MSA CYCLE TEAM will start their race at 9.16.  We wish these brave cyclists the best of luck on race day and will be cheering for you and willing you up Chapman’s Peak and the dreaded Suikerbossie hill!

THE TEAM: 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.

Some Argus Cycle Tour facts;

The fastest winning time was 2:27:29 (Robbie Hunter in 2008)

The fastest average speed was 47.48 km / h (Wimpie van der Merwe 1993).

The oldest person to complete the bike tour, was 92 (Japie Malan in 2012).

The race was cancelled twice in the past due to bad weather - heat in 2002 and strong wind in 2009.

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.”