Snowflakes and Spoons

When I was younger, my parents owned a small sailing boat. We spent many relaxing days sailing on both the Vaal and Hartebeespoort dam. My Dad was our Captain, My Mom, deck hand and myself a 6-year-old Barbie Princess obsessed self always in my lumo life vest. When on board I always had my life vest on. My Mom was strict about this.  One sunny morning we headed out on the Vaal for a sail around the island.Half way through our trip the clouds started coming in. Not worried I continued playing on deck. I can only remember snip bits from there onwards. The wind getting colder and it starting to rain. The boat going from a gentle rock to almost keeling over. My Mom getting me to sit just inside the door of the cabin to protect me from the waves now washing the deck. Maybe it was because of the chaos on deck and the overpowering elements, but I can't remember any sounds. No screaming or crying. In fact, I can't even remember being that scared. I do remember ...

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 as...

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 ahead When 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 afte...

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 est...

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 a   Functional mask   to 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 r...

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 eyes Allow frequent rest breaks Magnify written material using hand/stand/optical magnifiers Alternate covering one eye with an eye patch Use a cold compress over your eyes to ease muscle tension and 'revive' your eye muscles.  Use sunglasses and sun viso...

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:   1 2 3   -    ...