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