Living with Faith, Hope and MSA!

Creation

I do not think there is anyone on earth who does not, at least once a day, marvel at creation. It could be a weaver building a nest, a beautiful kitten or puppy, a majestic volcano erupting, a single rosebud, a school of tropical fish amongst the coral, the birth of a child. Wherever we look at whatever time of day, we see the magnificence of creation. Did it all start with a blob of rock infused with fungus landing on our planet, or a magical atom discovered under a rock? Whatever ones opinion is of how it all started, one thing is for sure, today's scientific evidence alongside ancient established religion, can live in absolute harmony and coexistence.

St. Anthony's Monastery, Egypt - 1700 years of Coptic Prayer

Before I connect the dots between Faith, Hope and MSA, I think I need to start right at the beginning. The earliest recollection I have of anything "religious" was my late mother doing her very best to get me to go to confirmation classes (My father had died when I was very young). I was baptised a Presbyterian but never confirmed. It simply was not to be and for most of my life I steered away from anything spiritual. I did however enjoy and appreciated visiting some of the most beautiful and ancient cathedrals, especially in France.

Rose Window - Chartres Cathedral

An experience I had in my 20's was rather unusual and left me with a feeling of "I wonder why?" I was spending a few days at the Guerlain factory in Chartres, France and during one lunch time, I ventured out and walked down to the famous Chartres Cathedral, well known for a magnificent, huge round stained glass window. It was made of a special blue glass only made in the region. Fortunately it was never damaged during the world war. As I walked into the Cathedral and moved towards the Altar and Sanctuary, time sort of stood still, and I was touched on the shoulder by a guide/security fellow who asked me if I was aware of what I had just done. I was standing in the centre of a labyrinth that was laid out on the floor and evidently, unbeknown to me, I had walked the entire labyrinth! I had done something that monks had done for centuries as a form of meditation and prayer. Must have been when "time stood still" for me. Perhaps that was when a being greater than me, instilled the first inkling of what was to come.

Labyrinth - Chartres Cathedral

Having lived in Hong Kong for a number of years, I was fortunate enough to have travelled to various far east countries and was exposed to Buddhism, Shintoism and various other religions. Nothing grabbed my attention nor rocked my boat. It was years and many ups and downs later, that are part of all our daily lives, when Christianity appeared once again in a most unexpected way. My life has been full of unexpected journey's, each one reaching a high and ending in a low. This has been my honest experience. One of the worst was while living in Cape Town and due to unforeseen circumstances, my business started to collapse and I had a heart attack. To keep my staff employed, I was forced to sell the business. I had made up my mind that I would leave the city life and move to countryside living where life was said to be more relaxed and laid back.

Andy (RIP), Laura, Me

A dear friend and colleague of mine bought the business and asked me to please stay on as manager for at least a year until he could find a replacement. He did everything he could to try to get me to remain in Cape Town and not move. I had made up my mind and together with my partner, we started searching for a suitable village to move to. During the year, my friend Andy had massive heart failure and was in hospital having had a pacemaker fitted. We visited on a Saturday and spent some time with him and his wife. He was restless, kept on looking at the electronic graph and listening to the beeps of his monitor. He would not relax and let the pacemaker take over and do its job. The hospital staff and Laura his wife were very unsettled and worried. On leaving, I remember saying to my partner that this could be the last time we saw Andy alive.

The St. Francis of Assisi San Damiano Crucifix

Then it happened! On awaking the Sunday morning, I had a shower, dressed in a suit (I had not worn a suit for years!) and said I was going to Church! Save for a few baptisms, weddings and funerals, I had not been in a Church for many, many, many years. My partner was agog and followed suit. He asked what Church we were going to and why. At the time I was not sure what prompted me, however the why was easy, I just KNEW I had to go somewhere and pray for Andy! The only Christian Church in the area, was five minutes away from our home, the Holy Redeemer Catholic Church. Both of us walked in with a little apprehension and sat in the back pew. During the Mass we had no idea what was going on, we stood up, sat, knelt and stood up umpteen times taking our lead from the rest of the congregation. What I did UNDERSTAND was the format of the Mass. The scripture readings from the old testament, the new testament, the psalms, the Gospels, the homily and the Holy Communion. Needless to say, we returned the following Sunday and the next, when I said to the parish priest that I thought I would like to CONVERT to Catholicism, the mother Church of Christianity. The rest is history, I became a Catholic Christian and have never looked back. There is absolutely no doubt in my mind that this was Divine intervention, there is no other explanation.

St. Luke's Retreat Centre

One aspect of this momentous occasion in my life, was our house hunting in the countryside. The number one priority was that there was a Catholic Church in the village we choose. We moved  to Bedford, became involved with Parish life, especially the youth activities, opened a Bed and Breakfast and small business revolving around cooking with lavender. I also got to know the Bishop of the Diocese, when I created the first website for the  Eastern Cape province. Things were ticking along and one day, while on a course in Bedford, facilitated by a Nun from the USA, there was another, totally unexpected, Divine intervention. Being a rather heavy smoker and during any break, I usually rush out and light one up. On this occasion I did not (Why?), I sat down next to another nun, Sr. Anacleta and asked her where she was staying while in Port Elizabeth. She said St. Luke's Retreat Centre and that the Bishop was worried because the manager was leaving shortly for the USA and they could not find a replacement. At that INSTANT, I knew that I was destined to move to Port Elizabeth and become the new manager. Within days the negotiations with the Bishop were complete, our house put on the market and preparations for the move made. Almost eleven years later, I am still at St. Luke's. Who would ever in their right mind, me included, think that one day I would actually work for the Church? In hindsight, one thing I do know, my life was being GUIDED by one person only and that person was my creator. My journey at St. Luke's over the years has also been filled with many up's and down's.

Andy sadly passed away and we are pleased that we have remained in contact with his dear wife Laura. It is interesting to note, Andy was born and raised in Port Elizabeth! A few year ago, my partner, without any prompting from me, converted to Catholicism.

We pray for research benefactors and hope for a speedy cure for MSA

The dots.. Faith, Hope, MSA. We always have many questions in life. I have talked about the highs and lows of one's life journey and looking back I asked myself, why did I buy a good business (High), why did it crash (Low), why did Andy buy my business (High) why did Andy die (Low), why did we move to Bedford Village (High) why did the move not go as planned (Low), why did I choose (or did I?) to work for the Church (High), why was I diagnosed with MSA (Low).

In between all these and many, many more up's and down's throughout my life, since my conversion there has been the absolute FAITH and understanding, that I am being guided by the Holy Trinity. Much prayer has taken place, and within these prayers there has always been the HOPE for a good outcome or resolution. My prayers have always been answered, however not always in the way I had envisaged! Knowing the absolute certain outcome and travelling through my last meaningful journey, living with MSA, is in a strange way almost liberating. For the first time in my life I KNOW the outcome (Low) and I am moving forward with great HOPE to the mysterious and probably, the Highest point in my life! Putting up with all the negative aspects of MSA is the last cross that I have to carry.

Whatever religion you follow (or not), always have great Faith, Hope, Prayer, Love and Courage as you traverse the difficult and challenging way ahead. Spread the word, make sure you talk about MSA to everyone that touches your life. It is a rare disease that everyone needs to know about.

[If you have not read the first post of this blog, I recommend you visit HERE and read in chronological order, it will make my journey a little clearer for you]

(Next.. Moving Forward with MSA)

Keep Safe,

Neill

Previous Page - Next Page

Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and muscle control. MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance. Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com

Putting the Jigsaw Puzzle Together.

Was my brain hit with MSA with the discovery of the tremor in my right hand or did it start years before?

No doubt it was years before and it was give or take around January 2013 when my urinary problems began. (see "Not a single drop!"). I say this due to the fact that the majority of the MSA symptoms begin with Urinary problems and according to research, OH (Orthostatic Hypotension) usually starts after Urinary problems. Most certainly I do have BPH and at the time that I had all the tests and examinations, the doctors said that although my prostrate was enlarged, it was only very slightly enlarged. Food for thought!?! There was also the continual tiredness, the leg pains and the heating up of my lower legs at the time (I have mentioned in an earlier post, my "automatic heater"). I had put this all down to the prostrate problem, however in hindsight, they were all Orthostatic Hypotension symptoms that remain with me today and have steadily become more pronounced. There was also the parkinsonian trait, the tremor in my right hand that have had for a few years, well before Dr. M noticed this and directed me to a Neurologist. (see "Catheters, Bags, Waterworks and a Minefield!"). Needless to say, although not acute, I was aware that my walking had slowed down.

As I mentioned in my MSA swear words post, I have most of the symptoms. They have a mind of their own and I never know what to expect from day to day. Here is the synopsis of where I am at the moment. Some of my comments below are blunt and straight to the point. That is simply me, saying it as it is!

I hope this will help to put the pieces of the puzzle together and more importantly start a dialogue with other MSA'ers and their carers and their families. It would be wonderful to share notes. The more we talk to each other, the more we are able to support each other as the disease takes hold and progresses. The more we share our journey's, the more we spread awareness. 

(ANS) = Autonomic Nervous System 
(PT) = Parkinsonia Trait

Urinary incontinence - (UI) - This has been with me for over five years. Although I have learnt to live  with it, I am dreading the day when permanent catheterisation will be necessary. It is already a mission as I have lost all sensation in my pelvic area! I do know when I have to visit the  bathroom, however I have absolutely no idea if I am actually having a pee or not. I have to listen to the sound or I need to look to see if all is working. I also have to make sure that my bladder has emptied as much as possible. This can take a further 5 to 10 minutes as it is a matter of a dribble here and a dribble there until all has stopped. This is important, as any retention in the bladder can very quickly lead to UTI's (Urinary Tract Infections).

Bowel Movement - (ANS) - Neither constipated or runny, one could presume an ideal situation, however in my case the only way for me to evacuate properly and completely is to have a huge and violent coughing fit and afterwards blowing my nose a few times! Sounds not too bad but it is. I am left totally exhausted. This is partly a neurological problem and partly an age problem where the sphincter muscles do not work as effectively. It may also be the development of Dysmotility of the colon, where the nerve signals that help the muscles of the colon move the contents forward are compromised. I have to be very careful not to cough, sneeze or blow my nose too hard during the day.. it could/can be very messy.

Exhaustion and Fatigue - (ANS) - This is with me all the time, day and night, it is debilitating and if I had only one wish right now, it would be for one night of deep restful sleep.

Sleep Disorders - (ANS) - There are two aspects that I wish were not with me. One is the vivid almost real dreams.. they could be called weird nightmares and very disjointed. On waking, I remember every detail. The other is the matter of OH (Orthostatic Hypertension). In essence, when getting up from a sitting or laying down position ones blood pressure drops causing dizziness. On the other hand, when laying down or sleeping, the opposite happens and ones blood pressure goes up to very dangerous levels. I am wondering if this has something to do with my inbuilt heater, the heating up of my lower legs that happens mostly when I am laying down or sleeping. I will check this during my next visit to Neurology. I am beginning to feel that Orthostatic Hypertension is perhaps one of the worst swear words, as it can lead to all sorts of serious complications. In the meantime, I have more or less raised my bed to about 30 degrees so my upper body is upright. This has also eased my breathing, the rhythm of which has changed dramatically. Rather than a peaceful and gentle inhale and exhale, it is almost like a quick deep inhale and slow exhale, something like sighing in quick succession. This is not strictly a sleep activity for me, my breathing is like this almost 24/7.

Bradykinesia - (PT & ANS) - It is the strangest feeling.. wanting to walk fast and you can not! Forget about running! There are also moments, not often, where I stop dead and cannot move forward. This is known as the "Parkinsonian Door". One has to consciously think that there is a stick lying on the floor in front of you and you "will" your one leg to lift and step over the stick. This is the only way to get moving again. My posture is beginning to change and coordination while walking is sometimes challenging. There are moments when I feel as though I have springs in my knees and become all wobbly then there are times when my muscles are ridged and I am not sure in what direction my feet will land. I am now also losing balance and I must be very careful not to inadvertently step backwards, even if it is a small step, I will fall over.. backwards. Another very strange phenomenon has started. If someone walks towards me and stops too close to me, I want to fall backwards. So my balance is shot and I now have to walk with a cane. The cane is more of a "security blanket", but I do need it most of the time. Needless to say, I will progress to a walker and down the line to a wheelchair. 

Tremor of Hands - (PT) - As I mentioned in a previous post, I have trouble brushing my teeth, shaving and writing. Being right handed it is a challenge. Even typing with my right hand can be a problem. At rest, my hands look normal with no tremor. Just recently, I have been having a problem with the touchscreen of my tablet. As I move towards the screen to touch an icon, besides having to concentrate to hit the right spot, when I touch the screen it is fleeting and too soft. It takes a few attempts before I am successful. Anything to do with my right hand is a problem, from picking up a pill to pop, to cutting up food with a  knife, putting a key into a key hole, taking a photograph with a camera, stirring a mug of coffee, drinking a mug of coffee, the list is endless. I am sad, although I have trained my left hand to brush my teeth and shave, it has just started a light tremor as well.  The fingers of my hands, although ever so slight, have started to curl inwards, almost claw like and I believe I can expect the same to happen to my feet.. I have a feeling that at my next Neurology visit, the drug Carbilev, a combination of Carbidopa and Levodopa that I am taking to help ease some of the Parkinsonian Traits will stop. In the beginning it helped however no longer. The ineffectiveness of this drug is also a strong pointer to MSA.

Dry Mouth - (ANS) - This is with me most of the  time and my way of relieving this is sucking on sweets or sipping juice. Sometimes, the walls of my mouth and my tongue feel swollen and am not sure if it is a sensation or reality and could be linked to Dysarthria (Speech deterioration) and Dysphagia (Swallowing problems).

Dysphagia - (ANS) - Although not with me all the time, the problem of swallowing pops up from time to time. Even getting a pill down my throat can be a problem. Hard foods are out of bounds. Meat, Chicken, Toast, Rusks etc. need special treatment before I can eat them. The meat and chicken have to be cut into minute sizes and doused in a gravy and the toast, rusks etc. have to be dunked in Coffee or Tea. As one of my neurologists, Dr. J said, the time for "sloppy" foods has arrived. I have been to see a dietician who has given me many tips and introduced me to the world of "Smoothies". Linked to this is digestion! I simply cannot digest a normal sized meal and if I try to, within minutes I start sweating and have dreadful stomach pain. It is now a question of 5 or 6 or more "nibbles" during the day. A challenge indeed, as I have lost my appetite and very seldom feel like eating. I have to force myself. It could temporarily be a good thing as I need to loose about 15 Kilo's. My doctors disagree and say it is more important to maintain my current weight.

Dysarthria - (ANS) - My speech is deteriorating. Usually, by midday, my voice has become somewhat of a harsh whisper. I must admit, for the first time in ages, this has not happened over the past few days! No explanation!

Eyesight - (ANS) - Although my eyesight is not too bad, I do wear prescription spectacles. Two things have developed that could be attributed to neuron atrophy. One is, the blinking of my eye lids has slowed down ( I do not blink very often) and therefore causes very dry eyes. I have to use "oily" drops at least twice a day. The other problem that has developed is the "greying out" of my eyesight. It started a while back, and has deteriorated. An example of this is when I am reading. Most of the text is black, however, some of the lines are grey. I discovered this "greying out" information while devouring and researching all I could find on MSA. At this stage I am only aware of it while reading.

In essence, this is where I am at the moment. Every piece of the puzzle put together creates the picture of Multiple System Atrophy. MSA has been with me for roughly five years or more. From the 15th June 2017 to 30th November 2017 it was estimated I had declined in health by roughly 15%. From 30th November 2017 to 17th May 2018 a further 10% deterioration. I am certainly weaker than ever before. Long gone are the days when I could shave, have a shower, get dressed and rush out to a party in under 20 minutes! It now takes me a minimum of an hour and the party is certainly not included. Let us see what happens at my next appointment on the 1st November!

Advice: Always be aware that MSA develops differently with each individual. We most certainly will share some of the same symptoms at some stage. Always remember we are "rare" people with a very, very "rare" disease and this makes us special people!

[If you have not read the first post of this blog, I recommend you visit HERE and read in chronological order, it will make my journey a little clearer for you]

(Next time.. Living with faith and hope.)

Keep safe,
Neill

Previous Page - Next Page

Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and muscle control. MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance. Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com

Learn How To Swear the MSA Way!

I am privileged to introduce you to a few of the rude Swear words we use in the world of MSA - Multiple System Atrophy. There are others. These are the real “nasties”! Try saying them now.

“Dysautonomia, Dysarthria, Dysphagia, Bradykinesia, Orthostatic Hypotension, Ataxia, Urogenital Dysfunction.”

Now.. Shout them out!

“DYSAUTONOMIA..  DYSARTHRIA..  DYSPHAGIA..  BRADYKINESIA..  ORTHOSTATIC HYPOTENSION..   ATAXIA..  UROGENITAL DYSFUNCTION..”

Got them? – Great! Now let me explain, in simple terms, what they mean.
(Note: I do not usually like "Laundry Lists", however, I think in this instance, it is the best way to explain the meaning of the swear words!)

Dysautonomia - Is a condition in which the autonomic nervous system (ANS) does not work properly and leads to problems regulating heart rate, blood pressure, breathing, stomach digestion, bladder, intestines, sweat glands, pupils, blood vessels and other internal organ functions. (Cerebellar dysfunction)

Dysarthria - Difficult or unclear articulation of speech that is otherwise linguistically normal. (Cerebellar dysfunction)

Dysphagia - Is when you find it difficult to chew, swallow or transport food from your mouth to stomach. (Cerebellar dysfunction)

Bradykinesia - Is defined by slow movement and an impaired ability to move the body swiftly on command, postural instability (falling over) and tremors. (Parkinsonian features and traits)

Orthostatic Hypotension - OH is defined as blood pressure fall within a few minutes of standing from a sitting position. (Autonomic Dysfunction)

Ataxia - Gait Ataxia (GA), is a wide-based stance with steps of irregular length and direction. (Cerebellar dysfunction)

Urogenital Dysfunction - Urinary incontinence (UI) is defined as persistent, involuntary, partial or total bladder emptying and Erectile dysfunction (ED) in men that usually occurs before symptomatic OH ( Orthostatic Hypotension ).

There you have it, the basic swear vocabulary of MSA. Do I use one or two of them or all of them. Sadly, I use ALL of them. Sometimes one or two a day, sometimes all of them every day and sometimes a double dose of them in one day!

For the benefit of my readers, I am going to attempt to take a very long hard look at the development and process of my journey. My next blog will reveal how I put all the bits and pieces together with the help of my various doctor's and came to the estimated guess of exactly when Multiple System Atrophy hit my brain!

[If you have not read the first post of this blog, I recommend you visit HERE and read in chronological order, it will make my journey a little clearer for you]

Advice: No matter what disease you have, rare or not, always keep faith!)

(Next time.. putting the Jigsaw pieces together)

Keep safe,

Neill

Previous Page - Next Page

Did My World Turn Upside Down?

Did my world turn upside down?

No.. my world did not turn upside down. Perhaps it was because for the previous, roughly five years, I had all the up's and down's of BHP, the endless PSA blood tests, the biopsies, the question mark about prostrate cancer, the endless feeling of exhaustion and the continuous dull but nagging pain in my legs and pelvic area. I was simply relieved to have a conclusive diagnosis, and that diagnosis explained so many of the symptoms I already have and others that are developing. Another reason that I did not loose my marbles, was my Faith. That is a complete story on its own and worthy of a post all of its own. I will slot it into this blog in the not too distant future.

I have MSA, Multi System Atrophy, it is as simple as that! Now was the time to find out all I could about this rare disease. Could you imagine how difficult this would have been without the modern technologies of search engines. There was fortunately, a huge amount of information to be read, analysed and digested. Most of it way over my head and very technical from a medical point of view. One "simplified" document I found that I could easily understand, was from the famous Mayo Clinic. I have copied part of it to page of this blog under the title MSA Basics. (When you have time, read the document here) Many of the other publications helped to fill in the blanks and I continue to read others almost every day. One that is particularly up to date, although full of medical jargon is Medscape. Others are listed on left of this page under "Suggested Links".

Relates to .005% of world population!

The major motivation in creating this blog, was the rarity of the disease. In South Africa, very rare indeed! To the extent that many doctors (GP's), Nurses, Care Givers, Physiotherapists, Dieticians etcetera, do not even know about the disease. Most that I talk to about MSA look at me vaguely and tell me they seem to remember hearing something about it when they were training.One cannot blame them! Medical science is a huge sphere and nobody can remember all diseases, especially rare diseases unless they are exposed to them on a continual basis. I am going to attempt to unlock the mysteries of Multi System Atrophy in this post, as simply as I am able to and from my personal perspective as a patient. This is not in any way an advice or professional medical blog, it is simply "My Journey with MSA."

Loss of Brain Cells

Many, many years ago when I was training as a beauty therapist and makeup artist with Guerlain France, I learnt that when we were born, we had billions and billions of brain cells. A fixed amount. From our first gulp of mothers milk we produce waste matter that is disposed via our natural elimination process, however a tiny amount of waste is left behind in our cells and believe it or not we begin to die, even our brain cells start to die. They never replace themselves and very, very slowly over our life, we have less and less of them. Even though I have a few billion less, now that I am three score and ten, there are still some billions left. What has this to do with MSA.. very little, however the neurons in the brain are less and these neurons are atrophying! They are breaking down, almost like a domino effect and with a hugely accelerated speed.

So, what do these neurons do? They send signals, for example, to our autonomous system, telling them what to do and how to behave. So, what is our autonomous system? They are the organs that you and I do not have to think about, to make them work. Your lungs, your heart the blood system, your kidney's, your bladder, your stomach and all the others.

The Atrophying of Neurons - Less Signals to Autonomous Organs

In essence, with fewer signals from the neurons, fewer signals get to your autonomous organs, your organs do not know exactly what to do, they begin to collapse, you begin to die. There is no cure and there is no treatment. The only thing one can do is to treat the symptoms as and when they occur and keep the functioning organs as healthy as possible and for as long as possible.

Multiple - Many, System - Organ/Functions, Atrophy - Neuron signal break down.

MSA is not a form of PD, Parkinson's Disease. When diagnosed, one is either MSA - P (with Parkinsonian Traits) or MSA - C (with Cerebellar Traits). When I read my Neurological file in the waiting room, I noticed that Dr. Whael had simply written, "Diagnosis: Multi System Atrophy". This made perfect sense even though it was the discovery of the tremor in my right hand, a parkinsonian trait that pointed to the MSA. After the examination and tests and analysis of the symptoms, I had both parkinsonian and cerebellar traits. I personally call it "Full Blown MSA".

Typical Neuron Degeneration

I need to digress here. In February 2018, on a routine check at Urology with the Assistant Head of Department, I told him about the MSA diagnosis. At my suggestion, we both agreed that the MSA would kill me before any prostrate cancer. We moved from six monthly visits to yearly checkups. The next visit will be in December 2018. I will continue the medication, Doxazosin, it keeps the waterworks open and flowing.

Every culture has its own swear words and differ from one ethnic group to the next, one country to the next. Believe you me the world of MSA has its own universal, dreadful swear words!

[If you have not read the first post of this blog, I recommend you visit HERE and read in chronological order, it will make my journey a little clearer for you]

Advice: For peace of mind, I find it always helps to discover as much as one can about one's disease. Never self diagnose, always discuss your thoughts with your doctor or neurologist.

(Next post... Learn how to Swear the MSA way!)

Keep safe,

Neill

Previous Page - Next Page

Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and muscle control. MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance. Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com

Wet, Wobbly, Weird. - Did I have Parkinson's Disease?

Brain Activity

Needless to say, I had researched everything I could find on Parkinson's Disease, and it was with trepidation and a little apprehension that I arrived at the Neurology clinic. They were also held at OPD3, the same as urology and always on a Thursday. I was pleased that I was dealing with the same nursing staff. There were way less patients and I was first in the line. Spot on 8am, I was called and as I walked in Sister E pulled me aside and said she was pleased that I was seeing Dr. W, the HOD, as she was considered one of the very best neurologists in the Eastern Cape, if not the whole of South Africa. She would persist until she arrived at a conclusive and accurate diagnosis. I was in good hands.

I must mention that  there is no simple test like taking a sample of blood to examine for Parkinson's Disease. It is rather a process of elimination of various Neurological diseases that could be relatively easily tested. It is more a process of very keen observation, testing of muscle strength, motor capabilities like walking, balance and a multitude of other physical tests. Obviously, the normal family and personal medical history is recorded in detail and so many, many questions were asked. She observed every little movement and nuance of my body even down to saying that she had noticed that I had difficulty in doing the buttons up while putting on my shirt. She went onto explaining every aspect of Parkinson's Disease to me.

Towards the end of the appointment, Dr.W analysed the three most irritating aspects of my current health. Firstly there was the incontinence caused by my urological problems and the constant pain in my upper legs and general pelvic areas. Secondly, there was the tremors in my right hand and problems that were developing with balance and strange, slow walking. (The balance problems I had always put down to being very deaf and various ear problems.) Finally there was my very short term memory and the constant feeling of a very light pressure on my head. I need to explain fully the short term memory. As an example, I have set alarm reminders on my mobile and tablet as to when I need to take my medication, five times a day. If I do not instantly move in the direction where I keep my medication, within five to ten seconds I will have forgotten all about the alarm and its meaning. The pressure on my head 24/7 (not in my head) is almost like someone has placed their hands, lightly on my head.

CAT Scan

Then the Wet, Wobbly, Weird came into play. Although not ruling out Parkinson's, Dr. W said there was a possibility that I may have CPPS - Chronic Pelvic Pain Syndrome! She always told her students, when diagnosing Neurological diseases, they must never forget to remember Wet, Wobbly, Weird as a pointer to CPPS. The wet is of course incontinence, wobbly is the balance/walking issues and weird is the hand tremors, pressure on the head and memory loss, all of which I had! There is a way to diagnose CPPS and if I had it, all that was needed was a single, what is termed a "Golden" injection and I would be normal and all symptoms would vanish! To prove or disprove CPPS I needed to have a barrage of blood tests ( I think there were over 20), full body skeletal x-rays, brain CAT scan and a lumber punch. The blood and x-ray's where scheduled immediately, the CAT scan at Livingston Hospital for Monday morning and the Lumbar punch also on Monday after the results of the CAT scan. (Provincial Hospital has their own Cat scanners, but no qualified person to operate them! Again bad management by the Eastern Cape Health Department!) At this stage, I was hoping for CPPS however, doctor had not ruled out Parkinson's.

X-ray's of Skeletal System were done.

The bloods were done, the x-rays were done and Monday I went to Livingston for the brain CAT scan. I was done by 9.00am and with pictures of my brain on disk, I headed over to Dr. W's Neurological ward at the Provincial for the dreaded lumbar punch. I handed the disk over to reception to pass onto the doctor and said I was scheduled for a lumbar punch. When I walked into the ward, I was hugely surprised. It was modern, immaculate and incredibly organised compared to the "war torn", shabby and dirty urology ward where I had the various biopsies.Evidently, when South Africa hosted the soccer world cup, funds were found to upgrade and modernise two of the wards at the Provincial, one was the neurology ward. As I walked past the Nurses/Doctor bay to the treatment room, I noticed Dr. W and other doctors peering at a computer screen, no doubt my brain pictures.

MSA Mask - Artwork thanks to Salt and Moon (https://sandsaltmoon.wordpress.com/2015/09/28/guest-doodlewasherafter-charlies-site-my-dad/)

I sat down and looked at everything that was neatly laid out for the lumbar punch, saw the huge needle, and shuddered! I am a baby when it comes to needles, even when I need to have blood taken for tests, I look away and grit my teeth. Dr. W walked in smiling and asked how I was feeling. She sat down, looked me in the eyes and said, "No need for the Lumbar Punch, as you walked past me, I already knew you did not have CPPS from the blood and x-ray results, and you were showing another Parkinson's Disease trait that we call the Parkinsonian mask." Evidently PD sufferers from time to time show a blank expressionless face with staring eyes. On that day I was showing the mask. I was sad, not frightened, simply sad and I thought of Michael J. Fox, the famous actor who has PD and is plowing millions of dollars into research..

MSA CAT Scan showing "Hot Cross Bun" Indication

Then I heard her say, you have a very rare disease, Multi System Atrophy. She showed me a print out of the brain scan and pointed out the areas that indicated MSA. At the time, I presumed MSA was another form of Parkinson's. Then I thought to myself, PD is not rare, many people have the disease. I knew that I had much research ahead!

I was prescribed a drug called Carbilev, a combination of Carbidopa and Levodopa to be taken five times a day 7am, 11am, 3pm, 7pm and 11pm.  It is a drug used to calm down the tremors and muscle spasms associated with Parkinson's disease. There is no "time release" mechanism for Cabilev, therefore it is taken every four hours. One of the major research projects funded by Michael J. Fox, is to find a time release system for Carbilev. In other words, one tablet a day instead of many. A follow up appointment was made for six moths time.

Advice: Never Ever Take Your Health For Granted!

[If you have not read the first post of this blog, I recommend you visit HERE and read in chronological order, it will make my journey a little clearer for you]

(Next Post... Did my world turn upside down? Full blown MSA)

Keep safe,

Neill

Previous Post - Next Post

Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and muscle control. MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance. Treatment includes medications and lifestyle changes to help manage symptoms, but there is no cure. The condition progresses and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com