A LIGHT FOR MY JOURNEY

Me gazing over the beautiful Richtersveld

It’s been a strange week.  I know I always try to paint a pretty and positive picture of what’s going on in my life.  It is part of my life philosophy to accept the inevitable gracefully and concentrate on the positive side, or change what I can into a positive experience.  But the week swept over me like a stormy wind…

It started with the news of fellow blogger’s sudden death.  This gentleman and writer of the blog “Simon Roodhouse and his new companion – MSA”, died unexpectedly and peacefully in his sleep on Easter Friday.  I quote his wife; “My lovely husband and best friend’s spirit was free from a body that was slowly consuming him. He’d not had to resort to using a wheelchair or having people caring for him apart from me and he’d died in the home he loved in his own bed.”  RIP Simon Roodhouse.

Following this was the news of the struggles of another MSA family in our town.  The Mc Donalds were on their way to the hospital with Reinette, where major surgery was to be performed.  I am thankful to report that, despite being in extreme pain after surgery, she is feeling better now.  I wish her a speedy recovery and all in this family the strength to deal with the challenges that this new situation bring.  You will remain in my prayers.

I was saddened by the news that my dear MSA friend, Trevor Pengelly, has been forced by his personal circumstances to move to an institution by the end of this month, to get the care that he needs.  It broke my heart when he told me about his 16 year old doggy that follows him like a shadow.  I didn't have the courage to ask what was going to happen to his doggy, and only I wish I could do more for him.

One of my resolutions for this year is to find other patients in South Africa so we can support each other, share information, and form a united front for creating awareness.  I was excited when another MSA family made contact through the new Rare Diseases Communities website, and extend a warm welcome these two beautiful daughters, who are trying to get information and help for their mother.  Her first symptoms appeared three years ago and she is already bedridden.  We welcome them to our group and wish them strength to deal with this challenge.

Yesterday was a low blood pressure day.  It left me frustrated en bored because I was forced to lie down and unable to lift my head because of fainting and nausea.

With all of this going through my mind, I had no idea what to tell my eldest son, who lives and works in London, when he phoned.  Should he come home to visit this Christmas?  Or should he wait until a later stage and then come home to work here again?  Nobody knows how my journey will be; how much degeneration there will be by next month or in a year.  I know only this; I need to embrace life to the fullest and do everything I can, while I still can. 

The following analogy came to mind: 

When you get into your car at night, and you turn on your headlights, they do not shine all the way to your destination.  Yet, you confidently start the car and drive, using the light from those headlights to guide you.

They shine but for a short distance ahead, but you drive confidently onward, never faltering, questioning, or stopping. You allow them guide and light your way.

Faith is the exact same thing; believing without seeing.  I cannot see all the twists and turns of my journey, nor can I see the end.  But I can feel and see His presence in my life, especially through the love and support of my family and friends.

If headlights that only shine dimly a few yards gain our faith, then how cannot the Son of God, who is the Light of the world?

I am that car, and God is my headlamp. I have to believe.  I have to have faith.

PS: Kathy Whitlatch Garrett shared this analogy from her pastor with me last year.  At the very moment I finished writing this post, she sent me this picture of me to which she had added the words. Kathy has MSA, lives in West Virginia and expresses herself through her healing poems.  Thank you for adding your beautiful words and thought to my photo Kathy.

A LONG WALK FOR MSA

Susan on the left and Emilene behind me

When, on our walk for MSA last year, my friend Laurette captured this photo with Susan and Emilene walking behind me, none of us had any idea of the significance of this. This was just the beginning of a long road of many kilometers that lay ahead; THE CAMINO DE SANTIAGO DE COMPOSTELA.  A long name for a very long journey.

It is with great joy that I can now announce that they and their hiking partners will be walking this pilgrimage for MSA in Spain in June this year. Last week I was privileged to meet with these ladies here at my home and their enthusiasm was infectious.  Read about this meeting on Emilene’s beautifully written blog, where there is also more information on this pilgrimage.

front; Emilene, me and Milo. Back; Karin Susan, Gerda and Lilian

Although I met Emilene for the first time on 3 October last year, she shares so many interests and passions with me that it feels like I’ve known her all my life.  She will start her pilgrimage with one partner, Eddie (some others might join her at a later stage), on the 6th of June in St Jean Pied de Port, at the foot of the Pyrenees in France.  They  will walk a whopping 780 kilometres to Santiago de Compostela in Spain and she aims to, God willing, end her pilgrimage in the cathedral there on the 12^th of July, her 50^th birthday. 

My dear friend Susan and I have, with our husbands, shared countless 4x4 safaris, weekend getaways, and holidays over the last decades.  Her sunny and easy-going personality makes her a joy as a travel companion and any trip with her will inevitably lead to lots of laughter.  She will be accompanied by her sister Gerda and  friend Esther. They plan to walk approximately 500 kilometres from Burgos in Spain from the 17^th of June and aim to end on the 12^th of July in Santiago.  The two groups are looking forward to meeting up over the last part of their journey.

We discussed what promotion materials they would be able to take with them.  The general rule is that a woman can carry 10% of her body weight, which leaves the average woman with 6 kilograms, including the weight of her backpack.  A huge restriction, especially if you are packing for a couple of weeks of hard hiking.  We decided on a laminated tag with the red poppy logo of the WALK A MILE, BURN A CANDLE campaign attached to their backpacks, a MSA bracelet, and a few very small flyers/business cards.  Rita Ydennek, the initiator of this project, also suggested that they take a memory stick with them in case they need to print more on the way.

Some questions were asked at our meeting: 


- What is the purpose of creating awareness for MSA?  
- Is there any research being done to find a cure for MSA, by whom, and where should funds be donated for this? 

Purpose of Awareness? The answer that came to my mind was as follows:  When, after a year on my own, I started looking for other patients with MSA for mutual support, I found many patients who were at a much more advanced stage than me.  This very grim picture made me realise that we need to pool our strengths world wide to draw attention to this disease, in the hope that it will lead to the funding of research, and eventually, a cure.

My involvement in these awareness campaigns has had a positive impact on my life and given me a purpose, a goal to pursue.  Instead of feeling helpless and hopeless I am now contributing to something that could lead to a positive outcome for me and all the other patients. 

After visiting another patient and her family in my home town recently and hearing their story, I realised that awareness could lead to better knowledge, also in the medical profession, and that in turn could lead to better understanding, service to and treatment of patients.

My friend Karin and I are also hoping to attract the attention of other patients in South Africa to our facebook page so that we can strengthen our local numbers and communicate with, and support each other.

Research? With the help of a friend, I found the following informative links regarding individuals involved with ongoing and outstanding research:

- Prof. David Robertson heads the clinical research department at Vanderbilt University, Nashville, Tenessee.  He is recognised world wide as an expert on MSA and has been involved with the disease for 43 years.


- Prof. Charles Ide of Western Michigan university and his team of researchers are also working on finding solutions for MSA.


What else?  It would be wonderful if somehow the press and radio could become involved before these hikers depart on this brave venture to create awareness for MSA.

“I am only one, but I am one.  I cannot do everything, but I can do something.  And I will not let what I cannot do interfere with what I can do.” Edward Everett Hale

MSA - NO IT DOESN'T GO AWAY

Karin here : While setting up this blog for Sonja in September of 2011, the only way to know more where this journey would take Sonja, was to read and explore what was available on the internet.  At that point we did not know of any other MSA patients in South Africa. It was virtually unheard of.

Personal encounters on blogs, available information on medical websites and snippets on Youtube were all quite alarming and frightening.  Both the lack of information as well as the information available were equally confusion and at times it all seemed like a bizarre nightmare that wwould soon be over.  The nightmare didn't end; it was merely the beginning.  

Both Sonja and I have tried to remain positive with all postings and communication despite the fact that we were establishing more contact with other MSA patients and discovering and learning more of the grim and bleak situation that lay ahead.

We could see that Sonja's future was leading to being confined more and more to the walls of her house.  The brand new designer kitchen is a constant reminder of the entertaining mecca waited and dreamed for.  You see, to be able to cook you need to stand firmly - on your own two feet.  You need to be able to use knives - with anticipated control (and no shaking)to chop, cut, peel and dice.  You need to be able to swing around between the fridge, the stove, the basin, the cupboard, the bin, etc.  You need to bend  to reach for a bowl, a plate or a pan. This is not possible if you have no control of balance.  You need to have consistent blood pressure so you don't get a dizzy spell or worse get nauseous simultaneously.  You need to be able to grip a pan, stir with a spoon, flip with a spatula, stand balanced, bend over, grip the hot bowl of lasagna, stand up, turn, set it down - all without even thinking about.  I can, you can, many can.  Sonja can no longer do these things.  Getting the idea?  

Most people can still undress, dress, bath, shower, sit down, get up, walk, turn around, run, jump, bend to pick up a child or puppy, dance; all with relative ease.  Sonja, my friend, can no longer do those things without help.  All this - in a relative short span of time.

Since the birth of this blog, I have seen Sonja's physical abilities wane.  At the same time, I have seen her inner strength develop its own invisible legs. I have watched her embrace this blog and the facebook page - 'playgrounds' I made for her for when boredom and frustration overcame her.  With grace she has accepted the challenge and  uses these spaces with comfort and ease to express herself. I observe her courage, admire her dignity and applaud her determination.  I will continue to support her - with love.

Trying to understand another's situation is probably one of the greatest gifts you can give someone with any kind of disability.  

To finish, I share with you what I wrote on our facebook  page today:  

"If you are a visitor for the first time, whether you have MSA, or lost someone to MSA, or you are a carer, or just curious or whatever your reason for landing here today - pause a moment please. There is a reason you are here today. Become part of our voice ... become part of our dream - to find a cure for MSA.

How? 
Just 'like' our page (top right hand somewhere) go on - you can!

Read our blog and / or forward it to someone - today.
http://msainsouthafricawithsonja.blogspot.com/

Tell someone that you heard of another rare neurological condition - called MSA (without feeling that you have to know everything about it - its impossible - that's why there is no cure!)
If you are stuck indoors, don't get out much - the internet is your oyster isn't it?

Why?
Because you WILL become a part of the chain of life and living and caring for humankind - which is one of the most fundamental reasons for living.

Who am I? I am Karin - the 'walker' ... the healthy one ... the one who cares for my friend Sonja. Sonja has MSA and is the main character of this page and this blog. 

People often feel helpless - because we cannot DO something in situations like this. You CAN - you are reading this - ' like' the page. Read the blog. Forward / share / tell. You will wonder whether it will matter - but you will KNOW if you didn't."
Be blessed.
Karin

AWARENESS, FUNDRAISING, RESEARCH, CURE

MARCH IS MULTIPLESYSTEM AWARENESS MONTH

Taken at the start of our walk for  'A mile and a candle for MSA'  on 3 October 2011

On 6 September 2010, I was diagnosed with MSA – Multiple System Atrophy - a neurological, degenerative disease most people have never heard of.

MSA is associated with the degeneration of nerve cells in specific areas of the brain. This cell degeneration causes problems with movement, balance, coordination, and other autonomic functions of the body such as bladder control, bowel issues, fainting and dizziness due to severely low blood pressure, speech and swallowing difficulties, sleep disturbances, breathing problems, and rigidity and tremors similar to Parkinson’s disease or ALS.  The cause of MSA is unknown and there is no cure.

In the aftermath of this diagnosis I searched for support groups and other patients with this disease.  On Facebook I have been fortunate to meet some extraordinary, brave and compassionate people who infect me with their enthusiasm and inspire me with their courage.  Some of them have lost their loved one’s to this disease, but continue to dedicate their lives to creating awareness for MSA. Some are my age, and some are younger.  One such person is a guy with a stunning smile and an equally stunning personality, who, when his struggle with the disease allows it, dedicates his days to supporting other patients and their families. Another person is a beautiful younger woman who was a marathon athlete, and now bravely battles this disease, that everyday robs her of more of her abilities. Some of them write beautiful poetry, others used to lecture at universities.  None of them have the ability to pursue their former careers, former hobbies, or care for their families and contribute to the economy.  Some still have teenagers with braces, and others have died since I’ve met them.  And so my list of MSA patients, who have no idea why or how they got this disease, grows ever longer.

All of us are dreaming of a cure and the day that we’ll be able to bring you the good news that we are better. Therefore we are humbly asking you to show us you CARE and give us HOPE by helping us create awareness for the thousands of people out there who are suffering the consequences of this dreadful disease.

There is no Hollywood or sport celebrity linked to MSA and it is left up to the patients, their families and friends to create awareness for this disease.

I have little chance to achieve anything by myself, but with the united help of my friends, and your friends, and their friends…..who knows what we can achieve!

Let’s start by taking just one small step towards a big goal:

AWARENESS, FUNDRAISING, RESEARCH, CURE

Please send this message in every possible way to everyone you know.

Sonja van Rhyn

“One person can make a difference, and everyone should try”.  By John F Kennedy

By signing this petition below, you too will become part of creating awareness and ultimately, a cure for MSA.
http://www.gopetition.com/petition/42198.html

Photo by Laurette's Photography

THE DIAGNOSIS (Part 5 of my story)

For the sake of new readers, I want to point out that on the blog  'My MSA Story' (no 1 – 5) appear in reverse order (no 5 – 1) and are interspersed by other posts of current events. In the right margin under 'labels' click on 'My MSA Story' (from 1st symptoms to diagnosis) to gain access to all 5 of them.

The year 2010 started off with us looking forward to our eldest son and his life partner's visit. I also had to endure another batch of MRI scans and visits to specialists that disappointingly, yet again, led nowhere.  The neurologist told me that I was a difficult case and that he had never struggled like that to make a diagnosis.  He then referred me to the professor heading the neurology department at the medical school.

So off we went on our short trip to Herold’s Bay and Oudtshoorn with Loubser and Lukasz.  I was shocked by how bad my balance was when during a walk on the beach the illusion of movement cause by the water under my feet resulted in me toppling over.  Besides that incident, we spent a blissful couple of days lazing around and then went on to game farm outside Oudtshoorn,  where we enjoyed fun-filled visits to the Congo caves, an ostrich farm, an early morning game drive and superb food at Jemima’s.

Back at home we started another renovation project on our home; re-plastering the outside, which was damaged by damp, and painting the exterior as well as the interior.

By the time I got around to consulting the professor in May I was falling more often.  I left our home carefully climbing over building rubble with hubby's help.  After a thorough examination the kind Professor concluded that “it was too soon to tell, but whatever it was would be progressive”.  

Back home I had to deal with a building crew and the chaos that is an inevitable part of living on a work site.  There was also dinner to be cooked...and, and.  

It was only when I went to bed that the full impact of what the professor said hit me.  Whatever it was, it wasn't Parkinson's and my worst what-if nightmares was about to come true.  Fearful of this yet unknown disease that was busy taking over my body, I spent most of the night crying my heart out with Johnny trying to console me.  Life however goes on and I was on my post in the morning to open up for the building/painting crew, albeit tired and with puffy eyes.

On our outings I usually hooked my arm through Johnny's for assistance, but by the middle of 2010 I starting using a walking stick as well.  It also marked the start of very rapid deterioration in my balance and movement.  By the end of June I was fearful of leaving the security of the stair rails in the gym to walk across the open space unassisted towards the apparatus.  I left there one morning knowing that I would never return; the risk of falling there had become too big.

I was told that exercise was the only tool to ward off the weakening  of my muscles, so once home I immediately phoned the biokineticist and organised two assisted sessions per week at their gym.  During the two months there I learned a valuable lesson; to work with what I have rather than what I had.  I needed to be more patient with my changing body.  They also checked my blood pressure before every session and expressed concern because the readings were always extremely low*.  Another concern was that most of the sessions started with discussions of my last fall, where I was experiencing pain and bruising, and how to avoid aggravating the damage.   Nothing however seemed to stop the progression; by the end of July I was falling daily.

During July Johnny had a visit from a Swiss business associate and it was during a supper date with him that I experienced a traumatic event; fainting in the restaurant and having to be carried out*.

I made many desperate calls to the neurologist and he desperately adjusted my medication often, but the falls still increased to sometimes three times a day.  I could not even be trusted to brush my teeth on my own.  When straightening up from the wash basin, I would fall backwards hitting my head against the door frame.  If the phone rang while I was walking I would get such a fright* that I'd fall over.  All this falling left me in such a stressed state that every time I fell asleep I would get a nightmare of falling and would wake up with a jerk.  

By the end of August I was a bruised bundle of nerves, lacking in sleep and appetite. But I can testify that exercise gives you strong bones, for despite the many falls, I never broke anything. For my safety and everybody’s peace of mind, we decided not to tempt fate any further and bought a walker.

On Monday 6^th of September 2010 Johnny accompanied me to an appointment with the neurologist expecting no more than the usual; it's to soon to tell.  He however looked me straight in the eyes and told us his final diagnosis was: MULTIPLE SYSTEM ATROPHY.  Johnny and I glanced nervously at each other; we had never heard of this disease.  He continued to explain and answer our questions about this disease.  My eyes brimmed with tears when I told me I was going to lose the use of my legs.  He recommended that we make use of all the help we can get.  We left there in a dazed state with referrals to the occupational therapist and the psychologist.  

Our lives was about to change drastically and I needed to get equipped for life in a wheelchair.  I was too shocked to even cry, and I actually never again cried like after that visit to the professor (there were, and are of course moments of sadness when I shed a tear or two).  Perhaps I instinctively sensed that how react to this news will have an effect on those around me.  This was the moment when I needed to be a big girl and start living what I read in Viktor Frankl's book, 'Man's search for meaning', many years ago;

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 

* Low blood pressure (orthostatic hypotension), I soon discovered, was another MSA symptom.  This often causes fainting. 

* It was only much later that I discovered that this 'exaggerated startle reflex' was a MSA symptom experienced by many other patients.

CONSTANT CHANGE IS HERE TO STAY

Karin standing, and I, photographed on World MSA day 

With my coping skills permanently challenged by MSA, I am trying to gracefully accept that CONSTANT CHANGE IS HERE TO STAY, but I cannot help but wonder apprehensively how much change we are going to have to shoulder in the coming year.

So far my speech, thankfully, remains unaffected, and, except for having to peel my fruit, I have no problem with swallowing.

Low blood pressure is a problem in the hot weather, but I am trying to manage that by keeping well hydrated, eating a salty snack when necessary, and l am keeping cool with the help of two newly installed air conditioners.  Despite all these precautionary actions there was big drama during the hairdresser’s visit last week.  As she was doing the highlights I felt all my warning lights coming on. First I started to sweat, and I desperately drank more water.  When everything started greying out, I desperately ate more chips, but when sounds started fading out I realised that I had to get into a horizontal position very quickly!  The hairdresser, concerned but unfazed by this, completed the task with me lying down.  Gold medal to her! After consulting with the neurologist I am now taking a smaller dose of medication at shorter intervals.  Hopefully this will reduce the impact of the medication on my blood pressure.

In terms of movement things have deteriorated since last year, and after a couple of falls with the walker I am now permanently in the wheelchair.  For the benefit of my bones and circulation, and with Johnny firmly gripping my waist, I try to walk up and down the passage a couple of times with the walker every morning.  Sometimes I freeze and have to abandon the attempt, but sometimes I still manage a couple of steps.

Sitting at the pc is limited because of pain in my back and hip, a lot of it caused by my tendency to lean towards the right side (Pisa syndrome). This is very frustrating for me because it limits the time that I have for blogging and communicating with others. 

My hands are now also affected, resulting in difficulties with the handling of cutlery and eating.  I am considering designing a big bib with the words; EAT, PRAY, LOVE, and to just swallow my pride and wear it with grace! Typing is becoming more difficult, but I have a neighbour who has written two books typing with two fingers and I still have a lot more fingers in action!

Drinking cappuccino’s in the coffee shops is becoming tricky and criteria for choosing restaurants now include that their cups must have nice big handles for a proper grip.  Hubby and friends now have to take the first sip so that the cup is not so full and then it is still a matter of grip, aim, breathe out and relax before attempting to drink.  Despite all this, I love going to coffee shops and I’m not giving it up soon!

But there are still a lot of things I can do and one of my goals this year is to find other MSA patients in South Africa to join our facebook group so we can interact with and support each other, and share our experiences and solutions for problems.  Our little group is very enthusiastic and has shared some great ideas and promised their support.  If anybody knows of anyone in South Africa with MSA, PLEASE CONTACT US by leaving a comment on this blog, or through our facebook page.

Karin and I have had the unexpected honour to be nominated to act as Ambassadors for MSA (scroll down to no 13).  We are not quite sure why, and are somewhat uncertain what is expected of us, but as you will see, we were nominated for what we have done so far, so I reckon if we just keep doing more of that, it should be okay!  We will most certainly try our best to create more awareness for the disease, especially before and during MARCH, which is MSA AWARENESS MONTH.

Now all I have to do is to get this ever more unwilling body to give 

its co-operation!

photo by Laurette

MISUNDERSTOOD (PART 4 OF MY STORY)

Today I am taking a moment to say good bye to one of the passions of my life; movement, especially movement to music.  There is no denying that it was once an important part of my life and the joy that I got from dancing, stepping and aerobics etc, can probably only be fully understood by fellow dance enthusiasts.  All of them obsessive by nature – or how else could you explain the many hours of repetition, even through pain!

Last week a neighbour dropped in for a quick visit and caught me in the act of doing my exercises, as prescribed by my therapist.  Her jaw dropped and I could see the disbelief in her eyes as she watched me lying on my back whilst exercising abdominals, gluteus muscles etc., and stretching.  I knew she was thinking that anyone who could do that shouldn’t be using a wheelchair and I despondently wondered how to explain this strange movement disorder to her, for, like many people, she assumed that all wheelchair users are paralysed.  Where do I start to explain to her that what she saw was the last glimpses of a former exercise instructor and dancer: someone whose movement memory automatically kicks in to point her toes and stretch her legs when she starts moving.  What she didn’t see was how difficult it was to transfer from the wheelchair to the bed, the struggle to roll over from a face down position onto my back, the ungraceful attempts to get into a kneeling-on-all-fours position, the severe loss of balance when I try to stand….

Her reaction reminded me of those last couple of months in the gym when some members treated me like I was crazy, and I suddenly understood why they thought that.  Although my lack of balance made it impossible for me to do the standing (sometimes beginner) poses in yoga, my natural abilities and strength still allowed me to do some of the more advanced poses when sitting or lying down.  At that stage I could no longer do any of the movement classes that required balance and co-ordination, but all seemed normal when I used the stationery cycle and stepper machine.  I now realise how confusing it must have been when I said that I couldn’t do certain activities because of lack of balance, but then went ahead and appeared to be quite competent at other activities.  But that was just me; doing what I could still do to the best of my abilities, and that is what my neighbour saw.

Now I often read about MSA patients who were initially thought ‘crazy’, and sometimes even treated in mental care for some time, before finally diagnosed.  If could change only one thing through our awareness campaigns and my blog, it would be to educate people to understand neurological diseases better.  The first symptoms are often very subtle, but very real to the patient.  Tests are mostly done to eliminate the possibility of other diseases, so when tests come back negative, it doesn’t mean that nothing is wrong.  Diagnoses are mostly made on symptoms, and can only be made when a patient has developed enough symptoms.  These symptoms can take years to develop.  Usually very stressful years, filled with expensive medical tests.  During this time one has to come to terms with the fact that something really bad is happening in your body, and instead of getting support, patients are often misunderstood and thought to be psychosomatic nutcases.  Hopefully, sometime in the future, doctors will be able to diagnose these diseases earlier to cut back on those traumatic years when one’s life kept in limbo. 

Every now and then I read articles on the possibility that exercise can greatly improve the symptoms of Parkinson’s and MSA.  Some of them even profess the value of forced exercise. I certainly don’t disregard the value of a regular exercise routine, but if anybody could have stopped this disease by exercising, it would have been me.  I put up a great battle for a long time. By the end of 2009, with the help of a neuro-physiotherapist, I tried even harder and in retrospect now wonder if I perhaps tried too hard.  Was too much exercise perhaps the cause of my extremely painful and stiff hip?

By the end of January 2010 I no longer had the balance required for the standing poses in the yoga class and my stiff and aching hip made the rest impossible to do. During the next couple of months my abilities started deteriorating rapidly and I started falling more often.  By the end of June 2010 I started walking with a stick and gym became too risky.  I continued exercising with the assistance of a biokineticist until I was diagnosed with MSA on 6^th September 2010.

That dancing, hiking, and fun loving girl seems so distant now, and as I continue on this new journey, she has lost importance.  Hopefully I have outgrown her for the better!  But occasionally certain images trigger my memory and I fondly remember how much control she had over this body, for now I have little control.