Friday 21 September 2018

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

Friday 14 September 2018

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

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Tuesday 4 September 2018

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.