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

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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