MSA Nutrition and DYSPHAGIA Smoothies!

Yummy! Photo kindly supplied by mymuybueno Chefs

I do not profess in any way of being a professional or expert when it comes to nutrition and must point out that most of this information has come from chats with my Dietician, my Neurologist and my Ear, Nose and Throat Specialist. There are two main aspects that I thought are most important for us MSA sufferers. Why we need to be aware of nutrition and what are some of the ways we can help in easing Dysphagia (when you find it difficult to chew, swallow or transport food from your mouth to stomach).

The importance of a good balanced and healthy diet is simple really.  We know that there is no treatment or cure for MSA and all we can hope for is to keep our autonomous organs as healthy as possible and for as long as possible. Nutrition is therefore so very important. I spoke to all three about vitamin/mineral supplementation and they all concurred that a well balanced and healthy variety of foods was a much better choice and more cost effective. A general all purpose multivitamin would do no harm, however they said no to specific vitamins unless a definite deficiency was established.

The three food groups below are suggestions for a Level 4 Dysphagia Diet, "Soft Foods". This is more or less where I am at the moment. I do from time to time slip into level 2 and 3.

Energy Foods, The basis of most meals could be, In the morning, soft cooked mealie (Maize) meal, rolled oats, pronutro or any dry cereal that becomes soft in milk. Dunk/soak bread and biscuits in soup, tea, coffee, milk. For Lunch or supper, mashed potato, pasta, rice, noodles in sauce. One could fortify the above with Margarine, oil, milk, milk powder, raw egg, peanut butter and sugar. Note: Peanut Butter added to Maize meal or rolled oats is very tasty. For those with a sweet tooth, Jelly or instant puddings, Thickly baked custard, sago or tapioca puddings, marie biscuits softened in tea or coffee. Soft bread or rice pudding without raisins. Cheesecake. Of course Sugar and cream could be added to any of the desert type foods.

Protective Foods, Should be included every day. Softly cooked vegetables in season or soup as well as mashed fruit without skins and pips. Some fruits are already soft for example banana, mango or paw-paw. For the vegetables or soup one could add Margarine, oil, milk, milk powder, raw egg, peanut butter and sugar. For the fruit one could add Milk, sugar, cream, yoghurt, fresh fruit juice, vanilla essence.

Body Building Foods, It is very important that Dairy Product should be consumed at least twice a day from a selection of Fresh milk, Yoghurt, Buttermilk, Cheese, Cottage cheese, Ice-cream, Milk shakes. Three to five times a week Scrambled eggs, Soft boiled eggs, Cheese Omelet. Also three to five times a week, Minced beef, chicken, lamb, tongue, liver. Cook until very soft, mince/mash with a fork and serve with gravy. Steamed and flaked fish moistened with a white sauce or milk. Flaked Pilchards or Tuna moistened with a white sauce or mayonnaise.

Moving from Level 4 to Level 3 and 2, is a question of moving from Soft foods to "Pureed Foods". For this I use a "Stick Blender" this is also known as a single immersion blender in some parts of the world. Another word for Pureed or "Sloppy Foods" as my Neurologist calls it, is SMOOTHIES. All too wonderful and so easy to make. Moving from Level 2/3 to Level 1 is moving from Pureed Foods to "Liquid Foods". It is a question of taking your pureed foods and straining them to get a smoother finer texture as well as adding more liquid. If you are making custards or gravy's, they need to be very thin but NOT a water consistency.

Three insights I think I should mention with regards to Dysphagia and were given to me by my dietician are, meals should be on the cold to warm side as Dysphagia is not a fan of steaming hot food. Also liquid meals should never be of a water like consistency, but rather on a slightly thicker side. Evidently this facilitates an easier transportation of food from your mouth to stomach. The last one, from a digestion point of view, is to have 5 or 6 small meals rather than 3 main meals a day.

Occasionally, I also have difficulty in downing my meds. Fortunately it does not happen often and with "capsules" I simply break them open and with pills I crush them. Mixing the "Powder" with a little fruit juice "makes the medicine go down". (Who remembers the movie with Julie Andrews?)

It all sounds wonderful and easy, does it not? Well it is except one needs to be creative and on top of things. I loathe the word "routine" however it is somewhat important to plan ahead. My personal ultimate plan is to have a good balanced breakfast of maize meal or oats fortified with peanut butter and lots of milk or scrambled eggs or cheese omelet. I simply HAVE to have a decent mug of coffee with breakfast! Mid morning, Lunch and mid afternoon, I plan to have my planned Smoothie of the day. For my last meal of the day, Vegetable/Chicken Soup or Baked/Steamed vegetables and a small piece of meat (Fish on Friday's) very finely cut up and mashed and with plenty of gravy. The five or six Small meals a day are so important. If I try to eat a medium sized meal, within a few minutes I start to sweat and my stomach feels somewhat uncomfortable. No doubt all to do with digestive system playing up.

Let's have some fun with Smoothies!

The world of smoothies is huge and the internet is full of amazing recipes and nutritional ideas. I have started a page in this blog entitled Smoothies and have posted a few of my personal favorites. The link is at the top of the page. I would love YOU to submit your favorite smoothie/s and I will add to my page. Just submit them to me via the contact form, top left of this page.

YES! You can have the apple crumble, toffee and custard pictured at the top of this page. Just "Blitz" it with your blender! [smile].

This past week has been a reasonable week for me. Speech difficulties started again (Dysarthria), mild coat hanger pain started in my neck and shoulders and after a walk of around 1000 steps yesterday morning, my legs turned to lead and I spent the rest of the day hobbling around with my cane (Ataxia). I am battling to sleep at night and I am missing my vivid nightmares/dreams! Constipation has returned and I have upped my fibre intake. The fuzzy/cloudy feeling in my head is still hanging around 24/7 as is the dull pain in my legs and the tremor in my right hand. One thing that has disappeared is the heating up of my legs (my inbuilt heater), no doubt to return at a later stage. What a disease.. when one think that a symptom has vanished or gone into remission, it pops up again. The fight goes on!

Remember to keep on walking as much as you can and keeping your protein intake up!

[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

Moving Forward with MSA!

My previous seven posts have mainly been "Catch Up" blogs to the point where I am today. During the past three weeks since I started my "Online" blog, it is with absolute amazement how quickly the audience has grown. My FB page has reached almost 18,000 people and this blog, as I write has reached over 6,000 people. Thank you one and all for your support and encouraging words.

Life is a Challenge

Moving forward with MSA, I know, is going to be a challenge. Not only for me, by for those around me and especially my partner (my carer) who is already showing signs of strain. We all know what path lies ahead for us and there is no doubt there is much anxiety, worry, depression, loneliness, pain, anger, and many, many other negatives. Each of us will have our own ways of handling each of the negativities. Whatever we do it will be a battle all the way.

Awareness and Knowledge

For me, the writing of this blog has been essential, not only for creating awareness of MSA but also it has forced me to read far and wide to find out all I can about the disease. It has been a calming and cathartic exercise and helped immeasurably in helping my coping mechanism. I think the most important thing I have discovered is the way we are able to communicate with other MSA sufferers, share ideas, learn from each other, moan and groan with each other and above all, support each other. Some of the groups that I now belong to are open and others are closed and strictly for sufferers and their carers. The amount of information I have gleaned from these group is considerable and being such a rare disease, it is encouraging to know that there are others that are going through exactly what I am going through. It is important to keep top of mind that not only is the disease rare, only .005% of the worlds population, it also makes each of us a rare and special person! At the end of this blog I give a list of all the links to the groups I belong to.

Nobody Knows 😪

My biggest gripe is that virtually nobody knows about MSA. I have briefly touched on this in previous posts, however it has now become a big thing for me! Many MSA'ers have the same gripe. Friends, Doctors, Nurses, Even Family, you name it, simply do not know about the disease let alone understand it. Yes.. we do look most of the time like a normal human being except when we are having a bad day walking or tremors are noticeable. The problem of course is our insides are breaking down and this is not visible to those around us. No one can "see" neuron atrophy.. so no one knows! I now carry with me at all times a "Book Mark" with a link to my Blog and a message. It is passed out to many people and I talk about the disease all the time. TALKING about it helps!

Don't Worry!

Each new day is an opportunity! From now on, moving forward is going to be a simple as I can possibly make it. Daily, I am going to walk as much as I possibly can. Daily, I am going to listen to my body and take a midday nap or a rest for an hour or two. Daily, I am going to make sure I tell at least one person about MSA. Daily, I am going to read all the latest posts in the MSA groups, interact and listen to what other MSA'ers are saying. Daily, I am going to take a long hard look at the grass, the flowers, the birds, the sky, the clouds, the animals, the people around me. Daily, I am going to make notes on how I feel, what is good and what is bad. Daily, I will read a little more on palliative care for MSA'ers. Daily, I will read more on how to care for my body as it breaks down, I need to be prepared. Daily, I am going to move forward, one step at a time, never looking back. This appears to be rather a full day; it is and it will keep my mind off matters! I still have a life ahead that I need to enjoy for as long as possible.

My Recommended Groups and Links

MSA Related Treatment & News Discussion (Private/Closed)

Multiple System Atrophy (MSA) Buddies (Private/Closed)

MSA A Patient's Journey

Multiple System Atrophy (MSA)

Defeat MSA
MSA Shoe

Multiple System Atrophy Research News

MSA Coalition Public Discussion Group on Multiple System Atrophy

Multiple System Atrophy (MSA) Angels, Memories & Spirituality

Rare Connect.

Multiple System Atrophy Trust - Non UK

The MSA Coalition

MSA - Multi System Atrophy - Port Elizabeth & Eastern Cape
MSA in South Africa with Sonja

Rare Diseases South Africa - Patient Support Group

Parkinson + Syndrome MSA

• Progress in MSA Research

[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... The Week that Was)

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

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