Shower hour - personal care management for MG warriors

Shower hour! .

As evening approaches so can the fearful thoughts: 'Do I have enough energy to shower, without putting myself in danger?' 'Can I do it myself or do I once again need to ask for help?'

Here are some of my tips and tricks for personal care management for MG warriors and those suffering from fatigue.

1) Choose the right time for you

Some of us have more energy in the morning and feel somewhat recharged when we wake. Personally, I struggle to get up in the morning and the thought of still having to shower, especially on a cold morning puts me off even more. I choose to shower at night to avoid the race against the clock in the morning. As showering can be very tiring, I can also safely rest after completing this task.

2) Have the right equipment in your shower 

- Handles/ Grab rails: Most showers are not equipt for persons with disabilities. Extra handles are cheap and easy to install. I have purchased some from the local pharmacy that sucks to the wall. This…

Myasthenia Gravis and Dogs

1)Can you tell us a bit about Bailey?
Bailey is now 6 years old (born 7 March 2011). She is a Saint Bernard. She is very sweet-natured, very protective and a very sensitive soul. She is very intuitive of emotion and can feel when one of us needs comforting. But just as with humans, the cortisone can make her a bit irritated. She LOVES cheese and plain yoghurt to the point of addiction, and of course any attention.
2)When did you first notice her symptoms? 
We noticed the first symptoms a few weeks after Bailey got spayed. She has Acquired MG that was triggered by the anesthetic used during the operation. She was 1 year old. Her hind legs just started to give way and she couldn't stand up anymore. This slowly escalated to her front legs also until she was paralysed in all four legs. By then we took her to the Vet a couple of times already to try and diagnose. They came up with anything from hip dysplasia to a broken pelvis. We then took her to Bryanston Vet Hospital, where they have a…

1st Trimester of Pregnancy and MG

I was late but not certain. I crept out of bed early and found the pregnancy test I had bought the day before. So many times before I had taken this test and seen a negative result, but this felt different.   After doing a silent happy dance, much to my dog's amusement, I silently climbed back into bed, waited for my husband to wake up and prayed a thankful prayer. as I'm not very good at keeping secrets I woke him after 10 min to share our happy news!

The first trimester is characterised medically by the first 3 months of pregnancy.
Personally, it's been 3 of the most exciting, but anxiety provoking months of my life.
If you have just found out you're pregnant or are planning here are 5 things to remember.

1. Choose the right Dr for you, preferably prior to conception. 

Make sure to find a Dr. that will work with you and neurologist. First prize would be someone who has guided a woman with MG through her pregnancy. I asked my neurologist for a referral and saw my Gynae…

Myasthenia Gravis and Pregnancy

Myasthenia Gravis and Pregnancy
It took us 8 years to get to the point where we could confidently decide to have a baby. Before this, MG had made my health a bit of a rollercoaster ride. From having a thymectomy, three admissions for IVIG and three admissions for Plasma exchange, three different immunosuppressive drugs and a host of other drugs my body had finally got the combination that it needed to stabilise. I was in what I called a drug assisted remission.
After consulting with the Gynecologist and Neurologist and getting the thumbs up we were warned not to get our hopes up for at least a year, given all the trauma my body had gone through. And then five months later, almost unexpectedly I knew I was pregnant. Confirmed by tests we are now embarking on a new adventure! I will do a series of blogs focused on MG and pregnancy during this exciting and scary time so stay tuned!

Firstly I wanted to share some of the most important facts regarding MG and Pregnancy:
Things to think about as …

Storm waves or Learning Curves

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 praying.  When I didn&#…

Steps to surviving a Thymectomy

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.
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

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 after they have had their Mestinon. 
·At work implement an ergonomic workstation design
Because the muscles are in…