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