Monday, November 11, 2013

NEUROLOGIST APPOINTMENT 31 OCT 2013


When I last consulted the neurologist in February, he referred me to a neurosurgeon to investigate the possibility of facet block injections as a solution for the pain caused by Pisa syndrome.  After x-rays showed no damage to the facet joints, the neurosurgeon in turn referred me to the pain clinic.  

The pain specialist prescribed several medications; an anti-inflammatory, a muscle relaxant (clonazepam), an antidepressant with muscoloskeleton pain relieving qualities, and a pain killer.  It was with the pain killers that I experienced the worst side-effects.  After two weeks of nausea and vomiting he changed the pain capsules to a weekly pain patch.  This caused even worse problems, made me extremely sleepy, very tired, and constipated.  The whole idea of pain control was to improve my quality of life by enabling me to sit for longer periods.  The patch failed to do this.  I was spending my days in bed asleep, too tired to do anything.  By the end of the first week I realised that anything that killed the pain effectively would necessarily suppress the central nervous system, causing side effects like sleepiness.  By that time the neurologist had received the report of the change in medication, and phoned me to let me know that the pain patch was not suitable for Multiple System Atrophy (MSA) patients.  I yanked it off, and did what I've always done when the pain gets unbearable; take two paracetamol and lie down in a mentally alert state.  That way I can at least chat with friends, read, watch TV, and listen to music.  I have continued with the other 3 medications, which give me some degree of relief from the chronic pain.


The recliner, nick named  'Lazy-Girl', has become an indispensable part of my life. That's my 'Sissi' Karin on the right.

Although the quest to find pain relief could not be considered  a huge success at this stage,  I might in the future need, and will have to live with, stronger medication .  The experience confirmed that doctors out there don’t know how to treat patients with MSA, and I made a mental note to insist that all medication prescribed by other doctors in future would have to be approved by the neurologist prior to me taking it.


The following deterioration in my condition has been noted in my report to the neurologist;

·        I have slowed down even more.

·        Transfers to and from the wheelchair have become more difficult.

·        My balance is even worse and has been the cause of me falling from a sitting position.

·       The fine motor co-ordination in my hands, especially the left side, has deteriorated, causing the following problems; handling of cutlery and therefore eating has become difficult (and messy), typing is slow with lots of mistakes, writing and signing my name is very difficult, I struggle to wash and dry the right side of my body with my left hand, I can no longer floss my teeth and had to buy an air flosser, putting on jewellery is difficult to impossible, doing up buttons is impossible, handling a newspaper has become extremely trying, slippers keep falling off my left foot, and I had to acquire a brace to stabilise my left ankle.

·        The dystonia in my left leg has become worse.

·        Tremors have become worse, especially when I'm stressed.

·        The Pisa syndrome has become worse with a more pronounced lateral trunk flexion.

·        The peripheral neuropathy and associated pain has worsened.

          My eyes are very dry, and vision, especially in low light, has deteriorated.

Some areas however remain unaffected or there had been little change;

·        My speech shows no signs of being affected.

·       Swallowing is only a problem with foods that have a dry texture because of my extremely dry mouth.
·  
·        My bladder is controlled with the help of medication, and I have had no infections since the diagnosis.

·        Constipation is controlled with the use of a bulking agent, Intestiflora, and Activia yoghurt.

       The following symptom has improved because of adjustments in medication;

·        I have experienced no drops in blood pressure that used to cause me to faint.


On the day of the appointment it was raining, which made getting me and the wheelchair in and out of the car, in a relatively dry state, a challenge achieved with the carer’s help and a huge golf  umbrella.

The doctor’s tests confirmed the deterioration of the fine motor skills in my hands.  He suggested some tweaking of my medication, and was open to my suggestion to try Amantadine, a flu medication suggested to be of some possible help by Prof Gregor Wenning in his talk with a group of patients earlier this year in Sydney. 

As my friend Ed would say; “physical advantage: MSA, mental and spiritual advantage: Sonja”

Although I have to accept the fact that it might be unlikely that a cure will be found in my life time, I am not without hope.  I am also very thankful that my speech and swallowing abilities have remained unaffected so far.

Jeremiah 29:11. For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.


Friday, October 11, 2013

A CANDLE LOSES NOTHING BY LIGHTING ANOTHER

Last week's walk on MSA (Multiple System Atrophy) DAY 3 October was truly a joyous and blessed occasion, made so by the people who took the time to come out to support us.  I don’t think it was my imagination that the love amongst the group was tangible.

My boys (men) walked down to the beach to join my friend Susan and the first group who did the longer walk, while Lilian helped me to get ready.  Johnny had taken the day off, so we soon followed them to meet the second group at the beach front.

For the first time another patient, Anne Marie Brass from Somerset West, accompanied me on our walk.  What a privilege it was to welcome her, her friends, and her doggy, Fabio, to our third walk.  My friend Laurette, also our official photographer (and my former dance teacher), brought 3 balloons along to celebrate our third year.  I hope we can add many more balloons in the years to come.

It was like a bee hive with everybody chatting happily with friends new and old, and taking photos while we awaited the return of the first group.  Laurette took the group photo before we set off to complete the second leg of our walk in glorious sunny weather.  My friends and family took turns pushing my chair, giving me the chance to chat to various people.

This time Karin not only persuaded Casa del Sol to open their doors early for us, but they also baked us a delicious cake.  Their kind and helpful staff also packed out our candles in the shape of two beautiful hearts.  We appreciate the gracious attitude with which Mike Rich and his staff once again opened their restaurant and their hearts to our cause.  Thank you to all who helped to run this occasion smoothly.

Because my left leg tends to out-perform me when I speak in public, I once again asked my friend Hugh Holtzhausen to read the following on my behalf;

“For the third year we are privileged to reach out and hold hands with others across the globe through this action on international MSA DAY, called; A MILE AND A CANDLE FOR MSA. This affords us an incredible sense of oneness with patients and their families all over the world. 

A warm welcome and thanks to all who came out to support us today.  Today, for the first time, I have the privilege to welcome another patient, Anne Marie Brass here.  She and her daughter, Andrea Ankers, recently made contact with me and paid me a visit. Thank you to her friends who accompanied and made this outing possible for her.  Welcome to Lionel McDonald and his daughter Linette. They represent our other local patient, Reinette McDonald.  Thank you to Paul Barnard and his group of clergyman for blessing us with their support.

With this project we hope to create awareness for this rare and largely unknown disease; MULTIPLE SYSTEM ATROPHY.  A question I am often asked is; “why create awareness for MSA?” In a nutshell;

  1. Ultimately we hope that awareness will lead to funding for research to find a cure for the disease.

  1. I can testify to the lack of knowledge of this disease in the medical and care professions. Awareness and dissemination of information can lead to better service to patients and better understanding and treatment of their unique problems.

  1. As patients we feel less hopeless and helpless when we are actively involved and contributing towards a more positive outcome for the disease.

  1. We also hope that our awareness campaigns will draw the attention of South African patients to join us.  These bonds with other patients and their families strengthen us and enable us to form a more united front. I pray that we will one day be strong enough to form an organisation for the support so desperately needed by MSA patients and their families.

I am very happy to announce that another walk is taking place in Pretoria today.  This was organised by Liebet Jooste, who lost her mom to MSA earlier this year.  Another candle has been lit to help us in our quest to create awareness.

Thank you to Emilene Ferreira, who once again created awareness for us on the Camino in Spain, where she acted as a tour guide for a group.  She only returned yesterday, and is here to support us today.

Without the unfailing support of my family and friends nothing would be possible.  I owe a big thank you to my Sissi Karin who did an excellent job of organising this event.  All the men in my life are here to support me today; thank you Johnny, Loubser, Chris, and Lukasz for making this a very special day for me. Thank you to Susan, Ermanno, and Laurette for their continual support. Thank you to Hugh for reading my speech.

Finally I thank the Lord for giving me all that I have. By His grace I am what I am (1 Cor 15:10), and I do what I do.”

Hugh then introduced my friend, Prof Nola Dippenaar, for a talk.  I am often asked the following questions;

1. Is MSA the same as MS (Multiple Sclerosis)?

2. How does MSA differ from MND? (Motor Neuron Disease – a famous ex rugby player in SA, Joost van der Westhuizen, has this disease).

3.  Why can’t I walk even though I’m not paralyzed?

Nola lost her friend MariĆ©, (Liebet’s mom) to MSA earlier this year.  Through her journey with MariĆ© she witnessed the degeneration caused by the disease first hand.  Professor Nola also has a CV and a list of degrees the length of my arm.  She has been voted lecturer of the year by the medical and dental students of University Pretoria on two occasions, and has delivered many local and overseas papers at various conferences.  She is a personal and corporate health coach, running branches of her business, HEALTH INSIGHT, in Pretoria and Cape Town

She explained the different diseases; MS, MND, and MSA, and my loss of balance and inability to coordinate movement.   I am very thankful for privilege of having her there to share her knowledge with us.

Thereafter Karin and I took the lead in the lighting of the candles, followed by Anne Marie and the rest.  Coffee and cake was enjoyed, and lots of chatting with friends followed. 

That, however, was not yet the end of my MSA day.  Whilst I rested, my sons, Lukasz and Loubser, busied themselves in the kitchen, cooking a delicious dinner. Our friends arrived later, adding their dishes to ours.  

It had become our custom to round up all the candles in our home to light them on the coffee table in our living room.  We remembered all those lost to MSA, as well as those currently battling the disease, in the peaceful ambience of the burning candles.

It was the perfect ending to a perfect day.

Note - the photo's are not necessarily in the ideal order because blogspot is not being very co-operative.  Suitable captions should explain.


Various moments of a special
day captured in a collage
Group 1 getting ready for the 'long' walk
Karin captured Group 1, indluding the dedicated
photographer Laurette carrying 3 red balloons
Group 2 getting ready for the shorter walk
Sonja chatting to the four clergymen from the
Helderberg Congreation -  they joined us for the walk 

Group 1 arrived, catching their breath before
joining us for leg 2 of the walk

Our youngest participant,
Emilene's granddaughter in stroller

Susan's bright purple T shirt says it all

We had coffee and cake


Casa del Sol arranged the candles for our ceremony
in a heart shape

Patricia MacNaught Davis from Helderberg Hospice
with Sonja

Part of the dream

Badged for the occasion

It was such a privilege to have Anne Marie,
also a local MSA patient with us

Anne Marie and her beloved Fabio

Group 2 gathering - waiting for Group 1


Lots of red again!

Marie Anne and her friends joined group 1 for part of the way
and completed the second half with Group 2

Yay! the finishing line for Group 1

Sonja's boys leading the tribe - all smiles

The rest of Group 1 at the 'finishing pole'

Loved this red hat
  
ooo - this could look good in Sissi Karin's hair!

Sonja with Susan, Lionel and Reinette

Chris wheeling his mum with Reinette and Lionel behind
Sonja and Rian Leith
Loubser at the wheel now with Sonja and flanked by Johnny and Karin.  Nobody looked too tired did they?


Nola explained MSA







Listen to our voice!
Watching the Parade with interest

It was a joyful day
Nola Dippenaar and Sonja 
A touching moment - MSA friends
Sonja lighting the first candle



A touching moment - Anne Marie being assisted to light a candle
In Gauteng another walk took place, led by Liebet Jooste
who lost her mum to MSA earlier this year

And so a successful event finished with much chatter and laughter at Casa del Sol 
Until next year - we'll continue to pass on the light



Sunday, September 15, 2013

YOU AND YOUR FRIENDS ARE INVITED…

3 October is World MSA (Multiple System Atrophy) Day.  This is the third time we'll be gathering and walking for this cause. Once again we'll accompany Sonja for a walk at Strand Beach from Casa del Sol. (More about MSA further down).  (If you are Facebook - you can indicate on our Event Page if you can join us.  


This is an annual worldwide project to create awareness for MSA. Every kilometre walked for this cause will be accumulated, added to a grand total which will be monitored in Belgium. The goal is to walk around the earth (40,075 kilometres). 



Part of this annual event is to light candles at 8.00 pm until 9.00 pm local time. As candles are lit around the globe, a virtual light wave will be created as it moves from time zone to time zone. We aim to light a candle for everyone who has MSA, as well as for those who have lost their battle in the past. We'll appreciate it if you would participate with that as well and light candles wherever you may be in the evening. Remember to send us photos of your lit candles.



Why are we doing this? Sonja, my dear friend, has Multiple System Atrophy, an incurable and rare disease. What is Multiple System Atrophy?


Karin & Sonja


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.)

Detailed Description here:





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, Hibernian Towers, Corner of Beach Road & Kruger Street, Strand.


Times:
Group 1: 9.15 - Walk will start promptly at 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 super tube and back. Susan Albertyn will be waiting there to guide you in the right direction for this 6 km walk.



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


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

Please come. Bring a friend. PLEASE LET US KNOW HOW MANY WILL BE ATTENDING AND INDICATE WHETHER YOU WILL BE DOING THE SHORT WALK (GROUP 2), OR THE LONG WALK (GROUP 1)




Tuesday, September 3, 2013

AN ATTITUDE OF GRATITUDE - LIVING WITH MSA


Another rainy day ahead, the little bit of sky visible from my bed a grim grey, the wind howling dismally around the corners of our home.  August was at the best of times challenge for me - my batteries run on sun power.  It was no longer the best of times and I wondered how I would stay positive in this weather.

As the rain pelted down causing rivers to flood their banks and homes, a facebook friend asked if someone knows the dimensions of the ark - she apparently has a handy husband.  This made me think of how I would stay 'afloat' on this grim day.  No one was likely to come out in this weather for a visit to cheer me up.  I needed to dig deep and change my attitude. 

Our thinking can be so powerful and negative thoughts would defeat me. An attitude of gratitude had to be foremost in my mind. Everyone without exception has something to be grateful for. Although everything in my life is not perfect and I daily battle with the pains and degeneration of MSA, I too have much to be thankful for.  When I started thinking of the things and people I could be thankful for the list grew very long. Here are just a few of them;

Thank you for the many happy days spent with my Sissi Karin on outings to beautiful places.  On sunny days I would often get an unexpected message from her asking if I’d like to go out.  When she gets here we’d have no idea where we would be going.  We’d simply get into the car and allow the magic to happen.






Thank you for all my supportive friends.  Every single one has a special place in my life and heart.  One recently took care of me, while her husband took Johnny on a much needed break. Some sweep in to brighten up my days, leaving yummy surprises in my freezer, and others cook meals for us.  I am very grateful for the friend who relieved me of the stressful burden of filling out tax returns, and the ever willing and handy friend who comes up with solutions for all our practical problems.  Some friends give me spiritual guidance, another offers her photography talents to our awareness campaigns and our family.  A very special lady shares her sound knowledge and advises me on health matters.  There are those very special friends who dedicated their pilgrimage on the Camino de Santiago to me and MSA, and the loyal friends and family who join our walk on MSA day every year.  Some have been with me for a life time, and other friends have come into my life recently.  I cherish my MSA Buddies on facebook, and hold my fellow patients and their families whom I've had the privilege to meet close to my heart.  Friendship is indeed a very precious gift.  

Thank for the beauty therapist, hairdresser, and dental hygienist who come out to my home to groom and treat me here.  I appreciate this privilege.

Thank you for friends and family who celebrated my birthday with me, making the day a joyous and memorable occasion.  Thank you for Karin who did most of the organising and spent the day here to keep me and everyone happy.



I am always grateful for my supportive husband and sons.  They are the centre of my earthly life.

My ark is build by my heavenly Father and stays afloat on gratitude.  With His help I will make it through this day, and all the other difficult days to come.

The bad weather ended with spectacular results; a sprinkling of snow on our beautiful mountains! 




"In the depth of winter I finally learned
that there was in me an invincible summer"
Albert Camus

James 1:17

 Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.


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