"WHERE DO I BEGIN..." - TOGETHER FOR MULTIPLE SYSTEM ATROPHY - IN SOUTH AFRICA

TOGETHER  FOR  MULTIPLE  SYSTEM  ATROPHY  -  WALK  &  LIGHT  A  CANDLE  - 3 OCTOBER  2015

By Karin - Sonja's friend.
 (Sonja's dexterity has become such that it is limiting her from writing long blogs.  So, I will piece this day together, for her, in the best way I know : from my heart.)

"Where do I begin

To tell the story 

Of how great a love can be 

The sweet love story 

That is older than the sea 

The simple truth about the love she brings to me 

Where do I start”

These words from that familiar old song has been drifting in my head in a haunting way since Saturday, 3 October 2015.  As friends shared their photos and thoughts after the morning's event, my heart has been filling up and my thoughts have become cluttered.   My dreams the past few nights have been filled with the scenes of this wonderful day.  I've come to realize that no words of mine will do this day justice. There were just too many special moments - tender and bitter sweet moments.

"With her first hello

She gave new meaning

to this empty world of mine"

The evening before the walk I lay in the bed next to Sonja holding her hand.  She with a whiskey in a sippy cup and me with a glass of wine, a few little salty crackers and her Johnny checking on us regularly.  'Als OK bokkie' - his endearing words to her are spoken so often.  It means "is everything OK my dear.  Bokkie is an endearing term in Afrikaans meaning little deer".  

Sonja and Karin - the evening before the Walk

"What an unbelievable journey this had been so far Sissi".  Sonja reminisced about the past 5 years, previous MSA walks; the people in the MSA community, (patients, carers that we have met); the TV debut last year on Kwêla and other memories that drifted into our minds that hour we spent in her bed.   We spoke about the anticipated walk the next day, the arrangements that are in place and the people coming from far. We were both at peace with everything; at peace but a little nervously excited too.

"She fills my heart

with very special things

with angel songs

with wild imaginings"

Arranging this walk had been such a pleasure, but also a bittersweet experience.  This time the main character in this event and my greatest cheerleader from the side line is no longer able to wave her flag as enthusiastically as previous years.  It was inevitable that Sonja's condition would deteriorate as time marches on.  We both chose to ignore this fact for the moment and I filled her in about the event, the arrangements, the anticipated hiccups and the solutions.  E.g. if it rained, she would not accompany us on the walk but would wait at the venue for our return.   If she felt ill we would take her home immediately but the event would continue. 

"she fills my soul

with so much love"

 I lingered a while, knowing that the next day would be a bit of a scurry for me to ensure that all things are in place and hopeful that Sonja would experience everything that this day had to offer in such a way that the memory thereof would continue to light up any dark days that may lay ahead. Scurry in a good way to ensure that it was good and special and as smooth as possible.

The Support Team
Standing Johnny, Anchen, Carer Lillian, Carer  Ursula
Front: Dominique, Karin, Marianne, Sonja, Susan, Hugh and Liebet

A few dear friends rallied round, offering their help and we are so grateful and so touched that they stepped in and helped to make all the things happen without a hitch.  Marianne Gonzales, Anchen van der Merwe, Susan Albertyn stepped in and did everything and more that I asked them to do.  Thank you so  much girls.   Casa del Sol have accommodated us for the fifth time, even though it was on a Saturday, normally a busy day for any beach side restaurant. We have been going there after our walk for coffee and someone normally speaks, telling everyone more about MSA, about Sonja and other patients and families.  They were fantastic, tending to our every need and request.  They cleared the back entrance for Sonja to access with her wheelchair.  Furniture was arranged to accommodate the group.  The staff came in early.  A table was set for the candles and another for snacks.  The waitrons were all stars.  A huge thank you to Casa del Sol for opening their restaurant and their hearts to us.

But I'm jumping the gun.  Many friends braved the iffy weather and came dressed warmly and determined to do the short walk.  We gathered opposite Casa del Sol where Laurette van der Merwe herded us together for a group photo.   Getting everyone to face the camera and saying cheese at the same time is quite a challenge.  Thank you for a marvelous selection of photographs once again and racing ahead and capturing some very special moments.  

The Group gathered before setting off on our walk

Let's fluff you up a bit!

Snug as a bug, with a huge grin and all set for the walk.

Sonja with Johnny and Carer Lillian

"That anywhere I go

I'm never lonely

with her along who could be lonely

I reach for her hand

It's always there"

Warm hallo from friend Susan

"Fancy seeing you here"

Happy walkers

Just keep walking

Hibernian Towers where Casa del Sol is situated on the ground floor

A good looking lot

Loyal friends

Newly weds

Dominique with Sonja

'Everything good so far Sissi?'

Lady with pink jacket was at school with Sonja and was the first time we saw her since 1973.  

Old friends, new friends, Family - all in support of this wonderful day

Smiling all the way

Stopping the traffic

Finally arriving at Casa del Sol, they were ready for almost 70 of us.  While coffee was being served to warm us up Hugh Holtzhausen made a welcoming speech.  On behalf of Sonja he thanked the many people involved in Sonja's life.  Special mention must be given to Johnny - he is such a loyal and dedicated husband.  A special welcome was extended to Dominique Nass who came from Kwazulu Natal.  Her brother died of MSA in March 2015.  Liebet and Adel drove all the way from Pretoria.  Liebet lost her mom to MSA.  Linda Erlank came from Cape Town.  She too lost her mom to MSA in March 2015. So there were four MSA families represented here in South Africa. 

Dominique made a very touching speech and spoke about how MSA affected her brother Kevin and their family.  When Kevin was still alive Dominique found this blog and came to Cape Town to meet Sonja.  Unlike Sonja, Kevin had speech difficulties from early diagnosis.   A selected group of friends received special training to help him with speech therapy and dedicated their time to spending time with him. These friends miss their buddy and these special times.  Kevin was apparently touched and encouraged by the many positive messages and posts that Sonja shared on Facebook and on this blog.  

Friends gathered around Sonja for brief chats and posing for photographs.  Everyone chatted and laughed the morning away.  Later everyone had the opportunity to light a candle.

All in all - the morning was a great success.  

Hugh welcoming and thanking everyone.

Liebet, Sonja and Adel

"How long does it last

Can love be measured by the hours in a day"

Friends and Supporters

A solemn moment - light candles and remembering other departed MSA friends.  What made this extra special was that loved ones of these MSA friends were with us this day.  Liebet who lost her mum.  Dominique who lost her brother Kevin.  Linda who lost her mum Magda.  

Wonderful friends

Dominique Nass sharing a special message with us

A loving touch

"I have no answers now

But this much I can say

I know I'll need her 'till the stars all burn away"

Linda Erlank (her mom Magda had MSA), Sonja, Liebet Jooste (her  mum had MSA) and Dominique Nass (her brother Kevin had MSA). We met all of these ladies on separate occasions and today they all met each other.  

"and she'll be there"  

Liebet with Sonja's Johnny

Sharing the light and remembering

Hugs don't always need words

"how long does it last

can love be measured by the hours in a day"

Standing: - Karin, Anchen, carer Lillian and a very shy carer Ursula
Sitting: Dominique, Marianne, Sonja and Susan
Special word of thanks to Anchen, Marianne and Susan who helped enormously behind the scenes.  Thanks girls
Lillian and Ursula are Sonja's dedicated carers

Four lovely girls that used to dance together, back in the day.
Laurette vd Merwe at the back (our fabulous and ever willing photographer)
with Marianne Groenewald, Sonja and Lorraine Weil
( photo by Donna Barnes)

The staff of Casa del Sol with Sonja
Ashley (next to Sonja) and her team - you guys rocked

Later that evening Hugh and I spent time with Johnny and Sonja and we lit the traditional candles.

As the day came to an end it became time to reflect on this day, World MSA Awareness Day 3 October 2015 and the purpose of it all.  I quote Sonja's own words 2 years ago which was read out then.

"

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

2. 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.

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

4. 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."

 Great success has been achieved with regards to no 4.  Because of Sonja's relentless and selfless efforts to reach out to other patients and carers, despite her own deteriorating limitations, special bonds have been formed.  I could see it in the eyes of Liebet, Dominique and Linda when they met Sonja and now also each other.  There was an immediate bond of true understanding and love.

Sonja's loving and dedicated care by Johnny and her carers, in my opinion, are factors that enable her to stay positive and motivated to continue to reach out.  Two years ago the heading of the blog she was able to still write herself said:  "A candle loses nothing by lighting another"

Little does she realize that she herself has become the candle whose light will never die but continue to spread.

I am blessed to call her my friend.

Tired but content.  The end to a perfect day.  

I have no answers now

But this much I can say

I know I'll need her 'till the stars all burn away

And she'll be there'

Thanks to my dear and loyal friend, Laurette, for most of the beautiful photos  on this blog, love Sonja

Two patients from Alberton, Sharon Boshoff and Linda du Toit van Heerden organised a walk there, this their team.

Sharon and her daughters with stunning candle display

MSA - THE LOST LAYERS OF CIPOLLINA

Al mio caro Cipollone

There once was a lady who frequently went to the gym. She was a fitness and health fanatic. A man of Italian descent chatted to her, he told her he was training to walk the Camino Santiago in Spain. Being a hiker herself, this sparked her interest. The man intended his Camino to be a religious pilgrimage, but If he touched on religious matters, the lady would warily eye him, she was there for a workout, not for a sermon. At that stage she and her family had stopped going to church, and her faith had started to wane.

The man, who was 69 years old, wrote a book about his 800 kilometre pilgrimage when he returned.

With time their friendship grew.  By the time the lady was diagnosed with an incurable degenerative disease, Multiple System Atrophy, she realized only God could walk her through this fire. Her friend, a sage, became one of her spiritual advisers. They soon discovered they share a love for the same music, and had similar life philosophies. When he told her about his interesting family history during World War 11, she said he had as many interesting layers as an onion. He said he would call her Cipollina (little onion), and said from then on she should address him as Cipollone (big onion). And that is what we  called each other to this day.

But Cipollina started losing her layers. First she lost the layers of dancer, gym instructor, and hiker.

On the Whale trail 2007

As time went by Cipollina became less proficient at housekeeping. The hostess who loved to cook and bake disappeared.

 The Cipollina who was interested in current affairs died when she lost the ability to page through the newspaper. When her boys come to visit, this Cipollina can no longer treat them with baked goods or special dishes, they have to cook for her now. Gone was Cipollina the gardener, 

the Cipollina who was the planner and traveller to faraway places, went with her.

Epupa Falls, Kunene river, on the northern border of Namibia

Where Cipollina took care of others in the past, carers now take care of her of every need. Her curriculum vitae is blank.

Stripped from all protective layers, with no more social titles, she asks;"Is my life worth anything?"

Her Heavenly Father answers" I paid for you with my Son, therefore your life has inestimable value my child."

1 Corinthians 6:20

"You were bought at a price."

INNER GARDEN - MULTIPLE SYSTEM ATROPHY

When I recently read 'The Secret Garden' I was enthralled by the idea of such a garden. In fact, I then remembered that my brother and I had discovered a secret garden when we were little. Hidden behind the row houses opposite our childhood home, we it discovered it by accident. Through hole in the fence we ventured inquisitively through dense trees that opened into what, to child like eyes seemed like magical faerie world.

 Groomed to perfection, it was the grass table and chairs that first drew our attention. Held together by chicken wire with trimmed lawn growing through the wire, I felt like Alice in Wonderland as I sat down on the chairs for an imaginary cup of tea. Taking in the peaceful surroundings, we were so enthralled that by the time we noticed the owner,  it was to late to escape. She turned out to be a friendly old lady, and invited us to come visit her garden any time we felt like it. Although she was not able to keep the garden in the beautifully groomed condition it once was, we had our wedding photos taken there years later.

1974

Multiple System Atrophy is causing constant degeneration, and I have to face the fact that 'Locked in Syndrome 'might be in my future. Although this might happen any time soon,  I need time to prepare myself, to create a space I would like to be in. Walled in my inability to communicate, my inner space will be a garden where I can spend time with God.

I shall weed out all  prejudice and keep an eye on racism to make sure it doesn't grow back. The ugly, tree called Impatience will have to go, it blocks the sun and nothing grows under it. I'll order truckloads of Patience to fertilise the garden.

I will sow tiny mustard seeds of faith and watch it grow into a tree  big enough so the birds of the air come build their nests in its branches. Instead of the thorn bush the cypress will come up, instead of the nettle the myrtle will come up. It will be a memorial to the Lord, an everlasting sign that will not be cut off.

Bushes of love will be nurtured to flower abundantly, filling the air with their sweet fragrance.

There will be plenty of forget-me-nots;

Forget not to be thankful

Forget not find to be joyful

Forget not God's gift of grace to me.

Forget not the Lord loves me just as I am.

I shall sow plenty seeds as according to St Francis of Assisi in his peace prayer;

"Where there is hatred, let me sow love,

Where there is injury, pardon

Where there is doubt,  faith

Where is despair, hope

Where there is darkness, light

Where there is sadness, joy"

I hope to see plenty of the plants I admire, those that seed themselves in the paving and cement, and bloom despite their adverse conditions.

At peace I will bask in the warm glow of my Heavenly Father's glorious love and grace, and just be, knowing that is all He ever expected anything more than that from me.

Isaiah 30:15

"In quietness and trust is your strength"

Laurerette kindly allowed access to her vast library of beautiful photos. Thank you my friend, I ap preciate

Image of forget-me-nots from the internet.

A CONVERSATION WITH GOD = MULTIPLE SYSTEM ATROPHY

My body shudders with spasms.  This has been going on for days. Struck down by what the neurologist diagnosed as Dystonia. The prescribed medication seem ineffective to control the current attack. I am disappointed. Johnny, who took the day off to take me out to lunch, now we will have to cancel our reservation. This was going to be the celebration of our 41st anniversary.

Desperate, I decide to self-medicate and use something that seemed to help before. An hour later I struggle to keep my eyes open.  Without the necessary concentration levels to read,  I lie in front of the television, going in and out of a dream-like state. My nervous system seem to suffer a sensory overload, the daylight is too bright, even with closed eyes.  I'm aware of Johnny hopping through the sport channels.

Any loud noises from the television, brings on another vicious attack. My  legs kick out in a spasm over which I have no control for a couple of seconds, but I remain fully aware during the disagreeable duration.

Clawing my way to peer over the edge of awareness, I remember that day this drug seemed to help, instantly wide awake, I realise it couldn't have been the drug, or it would have helped now. I smile: "That was you God!  You knew that was a big day for me,  You took care of me whilst I thought it was the drug. I get it Lord. I only need to ask and trust you.  You care, even about the little details of my life. Thank you Lord." God is silent. I imagine Him smiling at my epiphany.

The next morning I awoke without any spasms.  I check with Johnny if I really saw an elephant on television break away from its mahout,  to go on a rampage killing several and injury about two dozen.  He says; "yes". I check with him whether I really saw a flock of seagulls flew into race horses at full speed, causing the horses to buck, leaving buck a field of dead and injured jockeys in their wake. He says; "yes". It  wasn't a drug infused dream. It was real.

Psalm 37: 5
Commit your way to the Lord,
Trust in Him, and He will do this

Matthew 21:22
If you believe, you will receive whatever you ask for in prayer

APPOINTMENTS WITH THE NEUROLOGIST> UROLOGIST> OPTHALMOLOGIST - MSA SOUTH AFRICA

I had to cancel the June appointment with the neurologist because it was no longer possible to transfer from the wheelchair to a car seat. Thankfully we had been able to acquire another vehicle and had it modified by local engineering company, Easy Drive, for direct access with for a wheelchair via ramp. With some branding, the "SISSI BISSI" now also acts as a tool to create awareness for MSA. My new wheelchair can tilt to put me in a more comfortable position when Pisa syndrome causes me to lean like the famous tower. As I now flop forward as well, the name Twin Towers syndrome come to mind.

It was the 12th of December, more than a year since my last appointment, when I was wheeled into the neurologist consulting rooms. Despite the constant degeneration, I had seen the GP only once in 2014 and that for a flu vaccination. I wonder if it's just luck, or due to the expert advice from my health consultant and dear friend, Prof Nola Dippenaar from Health Insight. She  gave me some sound health advice and recommended some supplements, which I take daily without fail. 

When we recently went to the bank to give Johnny power of attorney over my accounts, two bank officials came out to car to check if I was compos mentis, and wanted me to sign the document.  I gave it my best shot, but the result looked like the effort of an inept pre-schooler. I can't write any longer, but thankfully there is technology to help with some of my short comings.

 When my old technology cell phone broke, we replaced it this double duty tablet which I use in a reclined position to write.

It had been two years since I've lost the ability to walk, the cause being cellebelar ataxia. This ataxia has been slowly claiming the use of my hands during the past year. The left hand curls inwards in a spasm like a broken wing, and is practically unusable.  The right hand is still okay. I need more help with everything I do.  Some menial tasks, for example, taking the lid off a lipstick and turning it out, have become impossible, so when you see me dressed up sitting in my chair, know that it takes the best part of two hours and the help of my devoted carers to get me there. A second carer joined the team in December since Johnny has hurt his back. 

I had increasing trouble with constipation, which always results in urinary retention.  The neurologist recommend using gliserine suppositories twice weekly as a regular regime, but a tip from a friend had me try another option; a cocktail of Fybogel and Movicol twice weekly takes care of the problem currently.  For the rest of the week I take Fybogel only.  This solution came by experimenting, and I suspect we'll have to be adjusted the recipe in the future. I wonder at what stage this lack of bowel movement can be called gastroparesis?

I complained about my deteriorating eyesight and dry eyes, and asked for a referral to an opthalmologist. He thought it was time to see a urologist. So off I went with referals to both, but determined to enjoy the holidays with my family first. My son Loubi had taken me to consultation, and my other sonChris and Lukasz were expected soon. 

From left back;Chris,Loubser,Lukasz,and Lilian,with Johnny and me

It was with some trepidation Johnny and I left for the appointment with the urologist, wondering if he would expect me to transfer to his table to be scanned, or expect me to produce a urine sample impromtu. But the most difficult part of that appointment was negotiating wheelchair around the tight corners into his rooms. Because the wheelchair can tilt, he was able to scan both the bladder and the kidneys in the chair. He was happy with both. After questioning on my medications, he suggested I change two; he declared the antidepressant, prescribed by the pain specialist the previous year, unsuitable as it interferes with the working of the smooth bladder muscles. He changed me back to the one I previously used, the one that gives me the appetite of a race horse and makes me sleep like a dog, unfortunately the little movement I have left is that of a sloth.

He was concerned that the medication I take to alleviate incontinence was worsening urinary retention, but with my promise that I'll inform him if it worsens, he prescribed another more suitable medication for incontinence. Frankly at this point I prefer dealing with the retention problem rather than the incontinence one.  Taking ample fluids seem to help. My last fear was dispelled when he handed me a sample jar, saying that patients sometimes have urinary tract infections without any symptoms. The sample was taken to his rooms and test results were negative.

At the opthalmologist Johnny had to help me transfer to his chair with all the opthalmic paraphernalia. I'm sure Bach's music playing in his rooms must have had calming effect on me. Besides needing new spectacles, he said that MSA had affected my eyelids (more ataxia), causing them to wink less often and incomplete, resulting in dry eyes. The layer of tears act as a lens, and without it, not only vision is comprised, but ulcers form on the cornea. He prescribed drops to use 4x per day, and a 'thicker' drop (higher viscosity) for use at bedtime. 

Two weeks later I woke up with a headache and cold fever. After struggling with urinary retention the previous evening, I immediately suspected it was a urinary tract infection. As it was Sunday, I sent Johnny to GP's rooms with a urine sample and my suspicion was confirmed; my first UTÌ since my diagnosis in September 2010.

The maintenance of the temporary vehicle of my soul seem to be a full time job, the dentist is next on my list.

2 Cor 5:1 

For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. 

Thank you to my dear friend Laurette van der Merwe for capturing the most precious memories in my life. All my love.

THROUGH THE FIRE- MULTIPLE SYSTEM ATROPHY IN SOUTH AFRICA

I dedicate this blog to my friends, Ermanno Aiello, Paul Barnard, and Hugh Holtzhausen, whom have given me spiritual guidance since my diagnosis. Thank you for keeping me in your prayers.

I am using the photos of my talented friend, Laurette van der Merwe, to tell my story. Thank you Laurette for giving me the freedom to choose from your vast library of beautiful photos.

Some words are mine, most are directly from His Word.

On the 16th of April 2011 a controlled fire got out of hand in the wind and very quickly was blown out of control.

After being diagnosed with MSA on 6 September 2010 I became overwhelmed by fear. There was no getting away from this consuming fire of MSA. No treatment, no cure.

Psalm 116:3

The cords of death entangled me, the anguish of the grave came over me; I was overcome by distress and sorrow.

Our beautiful valley was filled with dark clouds of suffocating smoke. Windows and doors had to be closed  for the soot that rained down for days. It looked like an end of the world scene; Armageddon had arrived.

My life was full of darkness, I was without hope. In that first year my prayer was mostly a desperate plea; “Please help me God.” 

Jonah 2:2

In my distress I called to the Lord, and He answered me. From deep in the realm of the dead I called for help, and You listened to my cry.

1 John 1:5

God is Light; in Him there is no darkness at all.

Some animals tried to flee from the fire to safety.

Where would I find a safe place to hide?

Psalm 32:7

You are my hiding place; You will protect me from trouble and surround me with songs of deliverance.

Firefighting units from all over were called in to help control the fire, which was threatening properties and farms. The sound of water-carrying helicopters was heard for days.

Who would come to rescue me?

2 Timothy 4:18

The Lord will rescue me from every evil attack and will bring me safely to His Heavenly Kingdom.

Many areas were gutted by the fire. Especially our beautiful indigenous fynbos on the slopes of our mountain in the Helderberg Nature Reserve. The reserve had been a favourite place since my teenage years. A group of us used to cycle there to sit and chat in the shade of the trees. When our boys were small, we often walked with them, and when they tired, they would hitch a ride on their Dad's shoulders. As adults they walked ahead of their ever lagging Mom up there. Seeing our beloved mountain reserve engulfed by fire was heart breaking.

Where would I find the courage to rise out of the ashes of my life?

Where would life lead from here?

Deutronomony 31:6  

Be strong and courageous. Do not be afraid or terrified because of them (MSA), for the LORD your God goes with you; He will never leave you nor forsake you.

God had taken my hand long before I became aware of Him, to walk with me through the fire. He does so every day.

Isaiah 43:2b

When you walk through the fire, you will not be burned, the flames will not set you ablaze.

Out of the burnt landscape of my life l was reborn. As on the mountain, signs of new growth began to appear.

2 Corinthians 5:17

Therefore, if anyone is in Christ, the new Creation has come: The old has gone, the new is here!

I had found hope again.

1 Peter 1:3

Praise be to the God and Father of our Lord Jesus Christ! In His great mercy He has given us new birth into a living hope through the resurrection of Jesus Christ from the dead.

Through His promises I found peace in the knowledge that I am in His care.

Matthew 6:26-30 abbreviated

26: Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?

 See how the flowers of the field grow. They do not labour or spin.

30: If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will He not much more clothe you—you of little faith?

 

Spring came, and on the 28th of October of that year Laurette and I had the privilege to travel up the mountain with two conservationists of the reserve in their Landy. I was amazed that they had welcomed the fire. It not only rid the veld of dead and bushy growth, some seeds, in fact, need the heat of a fire to germinate. The veld had recovered and flowers, especially my favourite Watsonias, were in full bloom. A most glorious sight.

My trust is in Him, who knows what He has planned for my life.

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.

2 Corinthians 5:1

For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in Heaven, not built by human hands.

Living fearlessly is a joy.