My Realty of MSA Has Finally Arrived!

I posted this on my FB page of the 31st December 2018, "I had the most awful experience at around 1.50 am this morning! I woke up and my jaw was hectically "convulsing", sort of exaggerated, fast, chewing motion. I put my hand up to try to stop it and may hand was also flaying about. Suddenly I realized I was not breathing. Panic.. I started thumping my chest as hard as I could, grabbed my glass to try to take a sip of water and that went flying across the room. Thankfully a gasp of air eventually hit my lungs and very slowly my breathing started again. I would call that a close call. By that time I had put my bedside light on and my poor kitty was staring at me wide eyed. I bent down to stroke him and say a few words. I could not, no intelligent sound came from my mouth. My mouth was raw and sore and felt all skew, as was my tongue. I immediately thought of stoke, however, as my "wheezing" was somewhat pronounced over that past few days, I put it down to my first serious Stridor attack. What a way to start the last day of the year!"

Six days later I have be waiting for some form of reasonable speech to return. I has not. It caught me off guard. Of course I had been expecting this to eventually happen, but never in a million years so fast. I had even prepared cue cards for this eventuality but never printed them. I even installed "OptiKey" speech recognition software on my laptop but had not even looked to see if it worked.

My realty has arrived. A new set of challenges. A new set of rules to play by. Not only has my speech been affected, my typing skills have seriously deteriorated. The last seven lines have take me over an hour to type. My journey with MSA continues.

I dedicate to post to Mr. Paul Norman - One last lecture, a true MSA warrior as recounted by his son William Normon. The Vimo link to the full video may be found here. 
Mr. Paul Norman - Rest in Peace

Thinking and praying for all the MSA warriors and the carers out there!

[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]

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 rapidly and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com

A Very Meaningful Few Days!

Front: Lorraine, Karin, Neill - Back: Hugh, Karel, Elizabeth and Emlyn.

Four very important events took place over two days, all connected to MSA.

I had two visitors that I had not seen in years. It was a joyful occasion and full of meaning as well as demonstrating that indeed the world is small and providence does exist! The Lord works in sometimes silent ways, however always with direction and compassion! He most certainly "talks" to us. I had known Karin and Hugh Holtzhausen for years. Hugh and I were colleagues when we were both in the Paint [Dulux] industry and I had met his wife Karin. She is well known all over the world through her compassionate care of Sonja Van Rhyn during her journey with MSA. It had been around 18 years since we last saw each other and it was MSA that brought us together again. How difficult for Karin, having two friends suffering from MSA, one already passed on to heavenly heights.

Rt. Revd. Bishop Vincent Zungu OFM blessing the Defeat MSA Awareness Shoe.
Elizabeth and Neill with the Bishop

Our "Getting to know you" Tea Party group in Port Elizabeth

The second event, was that Karin had brought the "Defeat MSA Awareness shoe" with her so that it could spend a little time in Port Elizabeth and visit a few special "Mandela" places. Today, as I type this, the shoe will arrive in Kitwe, Zambia for the remainder of December and then will be kicked further onto Greece. The shoe has a wonderful providence and thanks to Philip Fortier for keeping the shoe travelling throughout the world, helping to raise awareness of the disease. It is planned for the shoe to return to Port Elizabeth towards the end of February 2019, ready for MSA month of March, when Elizabeth, Lorraine and I will be organizing certain events to promote awareness of MSA. We were so fortunate to have the Rt. Revd. Bishop Vincent Zungu of the Diocese of Port Elizabeth join us and bless the shoe as it travels on its never ending journey. He blessed all those with the disease, their carers, the Neurologists, the doctors, nurses, researchers and everyone in the world searching for a cure for MSA.

Karin, Lorraine, Elizabeth, Emlyn, Neill & Karel my Carer.

The third event was so very special. Meeting the warrior Elizabeth and her Husband/Carer Emlyn and Lorraine who cares for her husband Alan made MSA more vivid for me. Knowing that there were real people out there who live very close to me was hugely comforting. Just sitting around discussing our problems, sharing ideas, exchanging experiences benefited each of us. I am sure it will be the first of many more get together's.

Karin, Me and the late Sonja Van Rhyn's Wheelchair.

The final event was bitter sweet. While relocating Johnny Van Rhyn's home, Sonja's husband, Karin and he where discussing what to do with Sonja's belongings, always a delicate and difficult task. Karin suggested that one wheelchair, that was specially made for Sonja, be paid forward onto me. Johnny and his two sons, Loubser and Chris immediately agreed. I was both humbled and honored that a "part" of Sonja would be with me as my disease deteriorated. I too, when the time comes, will find an MSA warrior to pass the wheelchair onto. Thank you Johnny, Loubser, Chris and Karin for thinking of my needs going into the future. Sonja and Karin's journey together is well worth a read and may be found here

Retirement

Generally, the past few weeks have been alright for me. With the visits of friends, new friendships, lots of excitement. Very early on in my retirement (not even two weeks), I have discovered one aspect I do NOT like! That is the lack of interaction with other human beings. I never ever thought I would miss this! I suppose it is because of the very active and interactive life I have led over very many years. What I DO like, is not having to set my alarm except for reminders to take my meds!

From the disease point of view, the ups and downs of MSA remain with me. From the Urology point of view, all is reasonably well with ongoing use of Doxazosin, plus a new daily dose of 100 mg Macrodantin antibiotic, or one can categorize it as an "internal" disinfectant to help keep UTI's away! At my last visit a week ago, we discussed the various methods of catheter use that will confront me down the line. I have almost lost all feeling in my thigh ad pelvic region and from time to time do not even know I am urinating. This is becoming an embarrassment during the day and an obvious hassle at night. I simply cannot afford the very costly adult diapers. A permanent catheter is going to be the only solution to improve quality of life. Now just to choose what method.. I will probably opt for Foley. The double dose of Carbilev (Carbidopa/Levodopa) that the Neurologist suggested has not helped at all. Ataxia and Tremor is about the same. I am certain that at my next visit, the drug will discontinued. It most certainly helps PD patients, however does not appear to help us in the long term. Of all the symptoms we suffer from, the most debilitating and frustrating for me is the total exhaustion! I simply cannot do what I would like to do and when I would like to. Everything is geared around exhaustion. When I am up and about, I need to get things done as fast as possible, for I know in a few hours I will be on my back again.. resting!!!

Thinking and praying for all the MSA warriors and the carers out there!

[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]

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 rapidly and eventually leads to death. Read my Journey with MSA @ https://msainsouthafrica.blogspot.com

It Never Rains but it Pours

An oft used phrase is "It never rains, but it Pours". This could mean Bad or it could mean Good! In my case, Thursday was both, an awful day that ended very beautifully! I have spoken here before about the Up's and Down's we all go through. Let me tackle the down first.

I was first in the line, at 4.00 am to see my Neurologist for the six monthly visit. By 7.45am three Neurologists had arrived and started consulting. Guess what, the admin staff had mislaid my file and I watched patient after patient leaving to fetch their meds and go home. I could have easily arrived home by 9am, sipping a much needed mug of coffee. Instead I was frustrated, irritable and down right angry. By the time I did get to see my Neurologist at around 11am, I was trembling severely, walking like a drunken sailor who had polished half a dozen bottles of Rum. and my speech was so bad, even I could hardly understand what I was saying! This of course demonstrated that it is essential for us MSA'ers to stay calm and relaxed. The moment any pressure arises, our symptoms magnify many times over.

Carbilev 25/100

The consultation started reasonably well and the Carbilev and Lyrica (Pregabalin) doses were doubled. I had expected the Carbilev to be increased. It is the drug of choice for Parkinson's Disease patients, to stop the tremors. It does not stop the tremors in MSA patients, in the beginning of the disease it simply helps to calm them. Eventually the efficacy stops and the dose is increased until a maximum of approximately of 800gm per day is reached. I have been on the double dose since Thursday evening and the tremors have not calmed at all. We will see over the next few weeks. My neurologist for the day was Dr. I.. a charming man. We spent much time talking about the future development and progress of the disease and he spent much time asking about my support system and carer. He questioned me at length about my carer as he believed as I do, that they are in for a very stressful time and they too need to be acutely aware of their own health and strength, both mentally and physically. Now for the "It never rains but it Pours".

I was diagnosed with a second Neurological Disease! Peripheral Neuropathy! It is not officially part of MSA, nor is it caused by MSA, but I am sure it must be linked in some way. So what is it? In simple terms, the neuron breakdown in MSA affects the autonomous functions of our internal organs. In Peripheral Neuropathy, the nerves at the extreme parts of our bodies, Fingers, Toes, Skin etc. etc. break down. Rather than type reams about it here, I have published a page explaining in full this new disease of mine. It is published by the Mayo clinic. You can find the link at the top of this page, under Peripheral neuropathy. One more downer in life!

Guerlain Perfume Samples from Canada

Now for the HAPPY aspect of "It never rains but it Pours". You go to a restaurant, have a great lunch and end with coffee. The waitron comes a says, would you like another Free cup of coffee. You expected one but ended up with More. In my case, as a lover of perfume (see previous post), a fellow Guerlain lover in Canada offered to send me a sample or two of some fragrances we cannot obtain in South Africa. I have always wanted to smell them. Well, after three months waiting and giving up on the postal services, the envelope arrived on Thursday and was waiting for me when I arrived home from my neurological visit! Once again, I was a very happy chappie and when I opened the envelope expecting a few, there were TWENTY Guerlain perfume samples! Only one of them I knew very well.. the age old Jicky! Thank you so very much Sebastiao Furtado Neto, you absolutely made my day! Talk about it never rains but it Pours! Ending a day on a high note always helps.

I have often talked about advocating and creating awareness for MSA. Yesterday (Friday), I was approached by a young family man of 39 who could possibly have MSA. We chatted via messenger on and off through the afternoon. Only in my previous post did I mention that one of the two saddest things for me, was it appears that more and more younger people are being diagnosed with possible or probable MSA. My chat with him yesterday proved two things. Being diagnosed or even the thought of MSA is simply an awful shock for anyone, and the help and support of all kinds is so necessary to help those new to the disease. One's mind goes through acrobatic loops and there are so many if's and but's to work through. Secondly the amazing work done by the MSA Trust and MSA Coalition is to be applauded. The FB Groups both open and private for Sufferers and their carers are an absolute Godsend! Thank you all so very much for contributing to the chats on a daily basis. Know that your participation IS helping others!  [See the links to the trust and coalition on the left of this page]

[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]

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

Three Score and Ten, A Time of Reflection!

Cannot remember my age in this photo. Too long ago 😆

Last week, I celebrated my birthday, 70 years old! Where did the years go and oh!, so fast! Three score and ten, I have reached my allotted time. Anything over is a bonus and for strong people. I truly have no regrets, however there are two aspects that make me rather sad. Of course the first one is the nature of MSA  and what we all have to go through. The second, is how many people many years younger than myself have been diagnosed. It must be simply devastating for not only themselves, but for their family and friends! To a large extent, at my age, one can expect the wheels to fall off and acceptance is easier although still painful and mentally challenging for all concerned. Time speeds up hugely as one advances in age and if there is one thing I have learnt is how very important it is to Live for TODAY. Yesterday has gone, never to be repeated, tomorrow is a mystery and a surprise, so no need to worry about it.

There is simply no doubt that my ability and strength to accept the inevitable is based on my very Strong Faith in God and the certain fact of knowing that all of us will die, no matter how or when.

I came across this! Photo from FB thanks Joe Becigneul

Every minute someone leaves this world behind. 

We are all in “the line” without knowing it. 

We never know how many people are before us. 

We can not move to the back of the line. 

We can not step out of the line.

We can not avoid the line.

So... Now that I am officially an "old" man,  around four weeks to total retirement and burdened with MSA, how must I keep myself occupied? I have actually given this long and hard thought over the past months and it has required a lot of soul searching and sorting out the fantacies and the facts.

The nature of the disease and relatively speedy downhill slope we face with MSA can of course be restricting, however, while I am able to, there are a few activities I will engage in. To help my symptoms as far as possible I will exercise (walk) every day and enjoy the beauty of creation in all its many forms, I will follow as best as I can a healthy and balanced diet, I will listen carefully to my body and if I need to rest or sleep, I will. I will also continue to read more and more about MSA and especially help and point my carer in the right direction, so that when I eventually need him, he will be better prepared.

Sainte Chapelle Paris - Stained Glass now Restored

So what "extra mural" activities will I follow to keep myself from going bonkers. Besides reading and learning more about my Catholic tradition and faith and the the obvious telly documentaries and news programmes I follow, I have one passion in life that I am certainly going to concentrate on.. the creation of top notch and classy Perfumes based on the French Tradition. For years I worked for the well known French house of Guerlain and I still consider them to be the finest perfume (and cosmetic) creators of all time.

Limited Edition 50 Numbered Bottles - Guerlain Rêve de Lune Perfume Extract

Roughly translated"An Enchanted Moon Dream"

Although by no means an expert, I have sufficient knowledge about the technical aspects to give this a shot. The creation of a perfume is a long and laborious task full of twists and turns at every sniff along the way. One works with minute drops of ingredients picked up by pipette and weighed to an exacting .00 of a gram. With the tremor in my hands, huge concentration is required and I am only able to blend for around an hour and then need a rest. For almost a year, I have been working on two. One is based on a cologne created  in 1860 by Pierre-Francoise-Pascal Guerlain for Empress Eugénie, the wife of Napoleon III and the other is a revolutionary unisex perfume created in 1889 by Aime Guerlain. I have made more than fifty trial blends of each over the year and have almost finalised the cologne, however the perfume has some way to go. All in all, this type of activity keeps my mind focused on something other than MSA. I truly believe that we all need some sort of mental stimulation and what better than a creative hobby. Sitting round and contemplating the ramifications of MSA is simply not on my pension agenda.

Monks in Prayer. My two friends.

If successful with the perfume adventure, I will produce in bulk, package and sell. Half the profits will go to a new Hermitage [Hermitage of the Blessed Sacrament] that is in the process of being set up by a priest and brother who are good friends of mine and the balance will help pay for a few odds and ends I may need.

Health wise, the past week has been reasonable. I seemed to have reached a plateu and remained in a stable position. Walking reasonably, a few OH issues and a few Dysphagia issues. The urology problems and the continuous exhaustion are always there. As we enter a full scorching South African summer, I expect to have a rough ride. In 7 days time I visit my Neurologist, Dr. W or Dr. J, there are a few developments, such as sleep issues and pain that I need to chat about.

Oh dear! I have just had a quick snooze before publishing this post and and have woken up walking like a drunken sailor and my voice has almost gone. Just shows how fickle MSA is and how symptoms can change in an instant! 

[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]

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

A Painful Wake-up Call !

Bite HARD!

MSA Sleep disorders are often discussed in various social media groups. Sunday early hours, I had a wake-up call that was disturbing and painful! After a very disjointed, long and very vivid dream, which ended where I was being held from behind by a stranger who had his arms around my body and neck, I tried everything in the book to break free. Eventually I decided to bite, hard, into his hand. I suddenly woke-up finding myself biting hard into my own right hand! It was immediately both shocking and painful!

Of the various sleep disorders associated with MSA, I most certainly have one of the more commonly  experienced disorders, RBD and I quote from Wikipedia:

"Rapid eye movement sleep behavior disorder (RBD) is a sleep disorder (more specifically a parasomnia) in which people act out their dreams. It involves abnormal behavior during the sleep phase with rapid eye movement (REM) sleep. The major feature of RBD is loss of muscle atonia (i.e., the loss of paralysis) during otherwise intact REM sleep (during which paralysis is not only normal but necessary). REM sleep is the stage of sleep in which most vivid dreaming occurs. The loss of motor inhibition leads to a wide spectrum of behavioral release during sleep. This extends from simple limb twitches to more complex integrated movement. These behaviors can be violent in nature and in some cases will result in injury to either the individual or their bed partner." 

Dreams - Photograph supplied by SLEEP RESOLUTIONS

The penny had dropped! Over the past 5 to 6 years I have certainly noticed my memory of realistic, vivid dreams has increased. It is now obvious to me, RBD is why I simply do not get a good night's sleep. This has also explained why I am so tired during the day and has no doubt led to me suffering from EDS, Excessive Daytime Sleepiness. More about EDS can be found on the JAMA Neurology site. This is another "something" I will have to take up with my  neurologist when I see her at the end of this month. Reading about RBD has been enlightening, as it is one of the "symptoms" that apparently point, at an early stage, to Multiple System Atrophy! It also appears to be caused by a degeneration of the Neurons in the Basal Ganglia.

Stridor and Sleep Apnea are two other serious MSA Sleep disorders that I suspect are beginning to hit me. These I will cover in this blog at a later date as and when they develop.

[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]

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

Gold Star for all the MSA Carers out there!

For all the MSA Carers out there!

I recently watched the very moving video of Sophia's Search for a cure and I simply must thank the entire Dohm family for making it available to the general public and especially the worldwide MSA community, patients, carers and families. Besides Sophia's brave, personal journey, one aspect stood out for me. It was the considerable pressures imposed on the carers of MSA patients.

As patients, we all have our ups and downs. We are all at different stages with this awful disease. We all want to be as independent as we can be.  We all want to "go it alone" for as long as we can. We all know that eventually, we will need to have family, friends or professionals to help care for us. Who will give me my medication at the right time? Who will turn me over in bed when I am unable to do it myself? Who will make my "Smoothies" and feed me? Who will help me get in and out of bed? Who will help me dress? Who will be on "Bathroom" duties for me? Who will drive me to and from Doctor's appointments? Who will be able to communicate with me when I can no longer talk? Who will be around to help with the million and one things that I may need?

The wonderful and brave Sophia - R.I.P.

Watching Sophia's video and reading much about caring for MSA patients has focused my attention on the invaluable and considerable work that it takes for a person to care for any MSA patient. Not only is it the physical strength required, it is also the mental abilities and courage that it takes to be a 24/7 carer. It boils down to the fact that a "carer" also needs a "carer" or a network of their own support group!

Keep fit and Relax

Keeping well can be very difficult because of the stress and physical demands of caring, but it is so important for their own mental and bodily health as well as to help them maintain their emotional and physical strength to cope and carry on. Some of the more important aspects that a carer needs to consider are, Eating well, a healthy well balanced diet will help keep their energy levels up; Stay fit, at least a little fresh air and exercise every day; Relax! read, ring a friend, listen to some music, take some time for yourself; Training, look for local courses on for example, lifting and handling techniques; Have a break, even a short break from caring will make a massive difference to how you feel and your energy levels. 

Of course it will be most important for carers to be in touch and personally interact with one's neurologist, urologist, doctors, pharmacists, therapists and of course the local Hospice. There is just so much that a carer needs to know and do. It will be very important to understand all aspects of MSA and be prepared for and understand all eventualities. To me, one of the very best resources for them will be the MSA patients/carers support groups on facebook. Fortunately, I am blessed to be in a position of "going it alone". For how long, is another question.

Please light a candle at 8.00 pm for all MSA Sufferers and their Carers.

To all the MSA Carers out there, I say Thank You and I will most certainly be lighting a candle for you tomorrow, 3rd October, World MSA Day! 

[ View Sophia's Video Here ] [ The MSA Trust UK Carers guide can be downloaded Here ]

[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]

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

MSA The Unpredictable Disease

Of course we know the end game, that is predictable, however, Multiple System Atrophy is so unpredictable from a day to day point of  view! One never knows what it will bombard you with this morning, this evening or tomorrow lunch time. I will try to demonstrate what I mean by some of my past weeks experiences.

To start with, every day, I expect to have the fuzzy, cloudy head. Every day I expect the dull pain in my legs. Every day I expect to walk in a weird way. Every day I expect my right hand to tremor. 

Graphic by Kaij-u

Last week Saturday I woke up feeling almost like a million dollars and I dared to hope that there may have been a misdiagnosis and I did not have MSA, that was until I started to brush my teeth (electric toothbrush). Most of you know that I can no longer use my right hand and have trained my left hand to shave and brush my teeth. As I lifted the brush towards my mouth, BAM, the tremor in my left hand was as bad as my right hand. I had to concentrate really hard to get the job finished. It was a painfully slow process to shave as well. The rest was easy, showering, dressing, putting on shoes and tying the laces etc. The tremor had vanished as quickly as it had come! Totally unpredictable! The balance of the morning was great and I was walking well. Around noon, I felt a little tired and went to lay down for a two hour snooze, my daily routine. I actually fell asleep and when I woke up, it was all back again, Fuzzy head, Leg pain, dizziness when I got up, Lower legs heating up and Ataxia at its best. I really thought I would have a full day of relief. For the first time in ages, I decided that evening to take for the pain in my legs, two paracetamol (800 mg) pills with my normal meds. I actually slept a little better than I usually do.

Sadly, I no longer am able to have a tipple - Graphic by Stonehurst

As I felt tired, had zero energy and battled to walk, Sunday was a very chilled day and I relaxed in front of Telly. Late afternoon my waterworks started playing up and there was a really bad stinging and my kidneys were sore. UTI (Urinary Tract Infection). I also started sneezing and suspected flu was on the way. Fortunately I had Trixazole (Antibiotic) and started a course of them immediately.

Monday was awful and I spent the day in bed. I could hardly move and voice had almost vanished. I had all the Swear Words! Enough said, I had had enough!

I battle to take out or put bank notes in my wallet!

During the remainder of the week I started getting back to my usual MSA self. One day I battle with eating, the next day I battle with walking, the following day I battle with pain, the following day I battle to speak and the next day I have most of the symptoms. The following day I could have a great morning and a bad afternoon, one simply cannot predict from day to day what is going to happen. Yesterday I had a day that made me realise that the disease has progressed and "bedded down" in my body. With Ataxia ever present and now with both hands having a tremor, I battle to get bank notes in and out of my wallet, I battle to get two pieces of paper apart, I battle to type, I battle to brush my teeth, I battle using a knife and fork and the list grows daily. I have observed and now begin to understand my personal "Parkinsonian Like" symptoms. My hands while at rest, most of the time, look normal and only very occasionally show a tremor. The instant I start using my hands and fingers to do anything, the serious tremors begin. It also now appears to affect hand to eye coordination. My hand/s do not always land where they are supposed to. Typing is a perfect example. Instead of hitting A I will hit Q, instead of hitting N I will hit J and so on. You have no idea how many corrections I have had to make while typing this blog. Even putting a spoon of sugar in my Coffee Mug is a hassle. there is usually more sugar scattered around the table and floor than what lands up in the mug. One simply has to laugh it off. If I did not, I would be a basket case!

I was prompted to do this post by reading many comments and questions posted on the MSA social media groups. One common thread I picked up was especially with the newly diagnosed people who are quite rightly, looking for answers. For example "I have x, y, z symptom, what can I expect next?" My answer, as is many other sufferers and carers answer, there is simply no way to predict what comes next. We may all have some of the same symptoms all of the time. Some may come and go. You may have a bad leg day followed by a bad speech day. I may on the same day have serious OH (Orthostatic Hypertension) and the next a bad leg day. There is no order of progression of the disease. We all have our personal MSA journeys to experience. It certainly is a difficult disease to get to grips with and takes time to come to terms with.

MSA - Helping Each Other

The golden ray on the horizon, are the many sufferers and carers who share their anxiety, views and questions on social media. We are the glue, the support base for each other. We also have the wonderful, organised groups like the Rare Diseases South Africa, Defeat MSA, MSA Shoe, The MSA Coalition, MSA Trust, MSA A Patients Journey etcetera who share a wealth of knowledge and experience with us [ see links on the left of this page ]. The more we interact, the more we begin to understand and very slowly begin to accept that we have MSA. It is a personal journey and we all need to help each other as each progress through their journey.

In a nutshell, I believe we should all follow the Scouts motto "Be Prepared". We need to know in advance what symptom could possible occur. Not all of us will develop all of the symptoms, some we may never have. It is a case of us learning from each other, what could develop and know in advance how to best handle a particular symptom.

Till next time, praying for you.

[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]

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