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Steps to surviving a Thymectomy

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When diagnosed with Myasthenia Gravis, your neurologist will start to search for the best treatment for you. One of the more drastic treatment approaches you may be faced with is a thymectomy. 
I underwent my transsternal thymectomy in 2009, two years after being officially diagnosed. Here are some tips to better prepare you and your family for this operation. Please note this is from personal experience and should not be taken as medical advice. Make sure to listen to your doctors and disclose all information needed prior to this operation.
Pre-operation
Buy pj's that button in the front for when you come out of ICU.Make sure you have some socks packed in for ICU as it can be chilly.Wash your hair. You won't be able to do this until stable and that will be with assistance.Neaten up below. They will be inserting a catheter and may have to shave the area to stick the tubes down.Try some deep breathing or meditation to help relax. See your assigned hospital Physiotherapist before …

Snappy adaptions for Fine-motor control and Myasthenia Gravis

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The finer things in life

Many tasks that we need to do involve intricate movements of our fingers. Our fingers are controlled by 34 muscles originating in our forearms and palms. These muscles connect to our finger bones by tendons. The fingers actually have no muscles in them! With 34 muscles needed, it’s no wonder that controlling fine motor movements can become an issue when diagnosed with Myasthenia Gravis.

Tips when suffering from fine motor impairment: 
·Avoid extended use of these muscles and plan aheadWhen I write, I notice that my handwriting can start out relatively neatly, but then goes downhill into a scrawl. By limiting the use of these muscles, you can preserve them for the things you need. If you know you are going to need your fine skills for a task make sure you doing it your 'strong' times. For some, this is in the morning and for others about an hour after they have had their Mestinon. 
·At work implement an ergonomic workstation design
Because the muscles are in…

What is a Rare Disease?

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February 28th is world Rare Disease Day!
When I was diagnosed I didn't know MG was classified as a rare disease. Here are some answers I found to the questions I had about rare diseases from scholarly articles.

What classifies as a rare disease?
Simply put, very few people have been diagnosed with a specific type of disease i.e. Myasthenia Gravis. 

More scientifically,
1) A disease must have a prevalence of <200,000 persons in the U.S. 
2) The Orphan Drug Act also defines diseases as “rare” if they affect more than 200,000 persons in the U.S. if “…there is no reasonable expectation that the cost of developing and making available in the U.S. a drug for such disease or condition will be recovered from sales in the U.S. of such drug.” Therefore the costs to making a cure/treatment of this disease would not be recuperated if they sold it in America. A disease like diabetes would therefore not be considered.

How many rare diseases are there? 
It is estimated that over 7000 rare diseases a…

The Masks we wear

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Have you ever felt like your hiding from the world or that nobody understands what you are going through? It may be because you are wearing a mask. 

Putting on a mask is an instinctual behaviour. Think of the caveman, even though he was scared out of his mind he would stand tall, pout his chest and roar back at the lion. The problem is that we have gone from self-preservation to self-damage.
We have gone from having aFunctional maskto an Avoidance mask
The 6 main masks we wear 
Strength Mask
This person is always seen to be coping, has everything together and always has a plan. They are the strong ones when everyone else falls apart. "I can cope no matter what life throws at me" "I can do it myself, I don't need help"
Intellectual Mask
This person feels special, influential, valuable and better than others. they often don't listen, to advice and pretend to know everything. "The research I have readshows ...." "I know what my body needs and no Dr. ca…

Seeing double? Visual accommodations for MG warriors

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Seeing double? Visual accommodations for MG warriors 
Myasthenia Gravis affects the muscles around the eyes. This can lead to double vision (diplopia), drooping eyelids (ptosis), dry eyes and trouble focusing. In addition, some of the medications used to manage MG can cause cataracts. 90% of MG warriors suffer from some form of ophthalmic impairment. 1
Below are practical solutions you can use to help ease the strain on your eyes. Change all fonts to large.Install screen reading software i.e. SpeakIt is available for free as Google Chrome extension  Control glare by adding a glare screen to the computer Install proper lighting, dim lighting will cause strain on your eyesAllow frequent rest breaksMagnify written material using hand/stand/optical magnifiersAlternate covering one eye with an eye patchUse a cold compress over your eyes to ease muscle tension and 'revive' your eye muscles. Use sunglasses and sun visors to reduce glare If necessary use Ptosis eye crutches or eye tape …

Exercise for Myasthenia Gravis: a necessity not a luxury

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Exercise: a necessity not a luxury.
If I saw this post a year ago, I would never have clicked on it. I was always tired and felt like a barely made it through the day. When people traditionally talk about exercise routines words like 'sweat' 'pushing the limits' 'weight loss' 'body building' jump to mind. While most chronic Warriors would love to engage in this type of exercise, it is unrealistic for the majority of us. A regular exercise routine has helped me to improve my health, therefore I wanted to share my insight with you. 

Suffering from Myasthenia Gravis, exercise can sometimes be seen as contradictory. In short, the strain on our voluntary muscles makes them weaker. However, we still need our muscles to move and engage in life or we risk becoming complete couch potatoes. Therefore a guided balance is needed.




Literature notes the following benefits of exercise therapy for chronic diseases:123
-Improving muscle strength without having detrimental e…

Banana Bread - Gluten & Dairy free

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Banana Bread

It's that time of the year where many are jumping on the health bandwagon, thanks to new year resolutions. It's likely that there are a few bananas are starting to see their last days. Below is my Moms quick and easy banana bread with a gluten, dairy free twist.

Ingredients:

4 big ripe bananas
120 g lactose-free margarine
150 g coconut sugar cream together
2 eggs
10 ml of lemon juice
500 ml gluten-free flour
5 ml salt
5 ml bicarb30ml
30 ml soya/almond milk (or water)

Method:

Mash the bananas in a bowl.
Cream the margarine and sugar. Add the eggs, lemon juice, bananas and milk to this mixture.
Sift the flour, salt and bicarbonate of soda into a bowl.
Add the wet ingredients to the dry ingredients.
Grease one loaf tin.
Bake at 180 for 50 minutes.

Go Bananas and enjoy!