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

Catheters, Bags, Waterworks and a Minefield!

Before I start with the next part of my saga, it is important to stress that this is my own personal journey. No two MSA journeys are exactly the same. Some of the symptoms will be the same and the eventual outcome will be the same.

So... I arrived home with my catheter and bag, tired, weary, worried, however with great relief that the intense pain had vanished. Well not exactly vanished as there was still a certain amount of dull pain in my upper legs and inner thighs. This I put down to the trauma that my body had undergone the previous week. Once I am onto something new, in this case BHP, PSA, Prostrate, Catheters etc., and with a very enquiring mind, I cannot let go! The next few days were spent gaining my strength back and devouring all the information I could find on the internet.

The Foley catheter that Livingston Hospital used, was only suitable for one month, so once I had learnt how to tape the tube to my inner thigh and attach the bag to just below my knee on the inner calf, I was ready to face the world. Another hidden angel emerged in the form of a pharmacy assistant who tutored me on the necessary hygiene, disinfecting and everything else that goes with wearing a catheter. One of the challenges I had, was to learn to walk normally again. I looked like a wooden soldier, all stiff and upright. I suppose it was natural having a foreign thing attached to ones body and besides, I was scared that I would inadvertently pull the thing out! Again the pharmacy Angel came to the rescue, saying that I was way too tense and needed to consciously learn to relax. It did the job and I started looking, feeling and walking like a normal human being, although somewhat slower than usual.

Realising that time was moving fast and I needed to see a Urologist, I venture out to the PortElizabeth Provincial Hospital. I was directed to OPD3 (Out Patients Department 3) who attended to all urological matters, where I asked to see a doctor. This is when I realised I had entered a minefield! I was told that I needed to make an appointment and before I could do that I needed a referral letter from a doctor. The orderly at Livingston had omitted telling me about this and anyway I had not seen a doctor there. Immediately I made an appointment with a general practitioner that I knew. I explained everything to Russ and asked him to make an appointment for me. After a week and umpteen telephone calls, he came back to me saying he could not get through to the Urology Department and best he write a letter for me to take directly to them. Off I went back to OPD3 and presented the letter. A file was opened and I was told to take it to the "booking office" to make an appointment. The earliest I could get was two months down the line! Although I explained to them that I had to have the catheter changed within a week, they would not budge. Back to Russ and he changed the catheter for me, this time using one that could stay in for three months. He also prescribed a months treatment of disinfecting tablets and a course of antibiotics. During this time I became an expert in changing bags, keeping everything germ free and generally learning how to live with a bag. 

Finally the day arrived for my appointment. I had been warned to arrive early as it was first come first served. 6am in the morning and I was around 30th in the line! By the time I was ushered to the Urology department, around 8am, the line had increased to well over 50 people. While waiting for the doctors to arrive (they were busy with ward rounds), the line grew and grew to over 100 patients by 10am. I was shocked. So many people with urological problems on one day. I was told this was the case for four days every week! One of the saddest moments was when I realised just how many babies, toddlers, teenagers and young adults there were in the line. One can easily accept the fact that us oldies have "waterworks" problems, but the babies and youngsters... it was heartbreaking. I had been living in a bubble. This was real life playing out before my own eyes!

Eventually I was called at about 11am to see the urologist. A young man, Dr. M who turned out to be my favorite doctor over the years. After a thorough examination and a barrage of questions, he diagnosed BPH (Benign prostatic hyperplasia - enlarged prostate) and decided to get blood tests done to check my PSA and for any hidden infections. He prescribed Cardura (Doxazosin) that relaxed muscles and helps the urine to flow freely. The catheter was to remain for another month until my next appointment. It was easier to get a relatively early appointment once in the system.

When I arrived for the next appointment, the catheter was removed and I drank about two litres of water to check if normal flow had returned. Yay! all appeared well although not a forceful flow, there was no need to catheterise! The Cardura worked a treat and I will be taking the drug for the rest of my life. The result of the PSA was 13.8 (normal PSA for my age is around 4 to 4.2) and I was booked in for the following month, to undergo my first biopsy, mainly to check for the possibility of cancer. The result was fortunately negative and I was booked for a normal check up in six months time. Life started to return back to a semblance of normality.

Over a period of three years I have seen various Urologists, Specialists, Consultants and the Head of department. Blood tests were done before each appointment and at one stage my PSA shot up to 31.8 and caused panic.The HOD Urology was convinced there was cancer and all in all I underwent a further two biopsies. The jury is still out on the matter of cancer. I had two further catheterizations and even did one myself at home in an emergency and feel somewhat of an expert when it comes to this procedure. I carry a spare catheter and the paraphernalia needed at all times.

Another upset was when one of my testicles blew up to the size of a tennis ball and I had to go back to Livingston Hospital for a sonar scan ( PE Provincial Hospital has a perfectly good, new sonar scanner, however the operator had passed away and has never been replace. It sits in its own room gathering dust!). All was well and it was an accumulation of fluid that would eventually be reabsorbed by my body. The doctors could not account for or explain the exact reason for the swelling or build up of fluid. I was also constantly aware of a dull nagging pain in my upper legs and pelvic area and a certain stiffness to my legs that the doctors said was caused by the biopsies. I was not convinced. Another development was the sudden and sporadic heating up of my feet and lower legs. Although only for a minute or so, they really get very, very hot to the touch and I put it all down to prostate problems. (As I sit here typing, my lower legs and feet have just heated up! I mentally think "My heater has just been switched on.")

I need to talk a little about the urology doctors and staff at the Provincial Hospital. They come and go and some have been there since I started my visits. Mostly, all are great people who work under simply appalling conditions. I have great admiration and praise for them. Understaffing and pressure is very evident. The maintenance of the buildings and equipment is shocking. It affects them and of course the patients. The heads of the provincial department of health all need to be sacked! The budget is there but not visible. No doubt corruption exists and many pockets are being lined. I also have a soft spot for Sister E. She has the disposition of a sergeant major but is empathetic, kind and keeps the department running as best as she can under the circumstances. She also manages to calm down 100 moaning and disgruntled patients. Over the years I learnt to be there at 4am in the morning to be 1st or 2nd in line. It usually helps, to get out as early as possible. Not only was there the doctor to visit, but also a visit to the pharmacist to collect the prescribed drugs. That is usually a two hour wait, again understaffing. Sometimes we get out at 4pm and if we are very lucky, around lunch time. An eight to twelve hour visit to see a doctor and collect ones drugs can be tiring and frustrating, however as pensioners and state patients, we do not pay a penny and are more than grateful.

On a routine checkup just over a year ago, Dr. M (my favorite urologist) asked me what was wrong! I laughed and said if anybody, he was the one who knew exactly what was wrong. He insisted and said to look at myself and repeated what was wrong. I looked down at myself, thinking perhaps my fly was open and I was playing "Flasher". I said I could see nothing!

He then asked, why was my hand shaking? I looked down and my right hand, resting on my knee, was shaking. Laughing I said, Oh that.. I have been shaking on and off for a couple of years and I cannot use my right hand to brush my teeth as the brush keeps on ending up my nose. Being right handed, I have been training my left hand to both brush my teeth and to shave. I considered the tremors as an old age thing.

Immediately, he picked up the telephone and called the Neurology department to make an appointment for me. He thought there was a possibility of PD (Parkinson's Disease). Dark Clouds were looming.

Advice: Please, all males, when you reach 40, have your PSA tested every year. All it takes is a prick and a few cc's of blood.

[If you have not followed from the first post of this blog, we recommend you visit HERE]

(Next post... Dark clouds are looming - Diagnosing 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

Not a Single Drop!

I even remember the exact date! Wednesday,16th January 2013! Even the time, 10.30 pm! After a few glasses of dry white wine, imbibed during a festive dinner held for the annual Catholic Diocese Priests Plenary that we hosted at St. Luke's Retreat Centre, I had the urge to urinate, went to the bathroom, stood there and absolutely nothing happened. No matter what muscle I used, not a single drop emerged!

As there was nothing I could do and laughing it off as temporary inconvenience, I headed for bed and fell asleep.The following morning, Thursday, with even more urgency and a little pain, still not a drop! I put it down to some sort of infection, took a pain tablet and went back to bed. My partner, urged me to go to my doctor, however being obstinate, I insisted that everything would settle down and I would be back to normal in no time.

Two days later, Saturday morning, I was in so much pain that I could hardly move and a doctor was called. He was not amused that I had left it so long and pronounced that I was in a life or death situation and needed to be hospitalised immediately. Being a pensioner, no medical aid and with much difficulty, I was loaded into a vehicle and taken to the out patients/casualty section of Livingston Hospital.

Livingston, was my first encounter with public health care at a government hospital in Port Elizabeth. It took at least an hour to register before I was led into a general ward and the sister in charge took another half hour to open a file for me, take all the necessary details, put me on a bed and told to wait for a doctor. Four hours later still no doctor! There were around fifteen other patients waiting as well. I eventually said to one of the sisters that the pain was unbearable and that they better do something as I felt I was about to die!

They wheeled me into a treatment room where I waited a further hour before a male orderly arrived to catheterise me. He was gentle, sympathetic and genuinely concerned that I had waited so long. After careful and thorough explanation of the procedure, he began.The first two litres drained were pure blood! The orderly was shocked, as I was. Although admitting to not being a doctor, he felt that I was on the verge of Kidney failure.Needless to say, at the moment of catheterisation, the pain vanished! What a feeling of relief!

I must spend a little time talking about the orderly who attended to me. I wish I could remember his name. He was the first person at Livingston Hospital that I found empathetic, knowledgeable and shared so much information with me. He spoke about PSA, BPH (Benign prostatic hyperplasia), Prostrate cancer and much more. The next step he advised, was to visit the Urology department at the Port Elizabeth Provincial Hospital.

Needless to say, I never caught sight of a doctor and many hours later I limped out of the hospital totally drained, with a bag in hand that was quarter filled with blood and many people staring at me as though I was a zombie. I did not care! After four days of hell, I was pain free!

Oh! by the way, the reason why I and the other waiting patients did not get to see a doctor, they were all busy treating fellows for gun shot wounds. Being a Saturday afternoon, the gangs in the northern areas were having a go at each other and there were many casualties!

Advice: If you ever have a problem urinating, see your doctor immediately!

(Next post.. my journey through urology and heading towards MSA!)

Keep safe!
Neill

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