Showing posts from March, 2016

How can a Speech Therapist help an MG warrior?

A Tuff Pill To Swallow

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Please note that this post has been split into swallowing and speech difficulties in order to allow for easy reading.
Post 1: Learning how to swallow in times of autoimmune flare
Before I was diagnosed, I had great difficulty swallowing. My diagnosing Dr. mentioned that it would start to improve once the medication started to take effect. After 6 months I could see improvement, however, I was still choking on a cup of tea and taking an hour eat half a sandwich which lead me to feel highly frustrated.
My friend Stephanie was studying Speech Therapy at the time. After telling her my concerns she suggested a few practical steps which I still use today when I am having a bad day. Stephanie now owns her own private practice and was kind enough to answer some questions that I feel will be beneficial for MG warriors to know. My personal comments are added in italics.

Why would an MG clien…

The Sacrifice behind Passion

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The Sacrifice behind Passion 
My friend Lani SO LOVES running that she is preparing to run the comrades ultra marathon. She has adapted her diet, pushed through extra training sessions, sore feet, blisters, ITB and sunburns. Lani SO LOVES to run that she is willing to give up time with her family, wake up at the crack of dawn to get to races and push her body to the limit to reach her goal.

 “When I am on a long run, I have moments where my body feels in sync. My breathing, arms and legs are all in rhythm. I forget that I am running and I just feel happy. Then I get times where I run out of fuel and 'hit the wall.' Suddenly all my limbs feel very heavy, my shoulders droop and I break out in a cold sweat. It feels like the sun sucks the energy right out of me. I can feel the salt on my skin and sweat pouring into my eyes. I try to drink water, but it feels like it's never enough. T…

The traveling spoon: The Puddling Shop

The Pudding Shop With an artsy feel, this restaurant was my sister-in-law's pick for our latest travelling spoon adventure. After parking in the street, we found The Pudding Shop tucked behind an Italian restaurant. A pathway of hanging origami stars, strings of beads and spicy aromas welcomed us into this uniquely decorated little haven.

A few tables are located in the garden outside the main seating area, which shares a border with the Italian restaurant. We chose to sit inside under the draped ceiling. It was beautiful and reminded me of the times I built tent forts as a child. Unfortunately, it was also as hot inside the restaurant as those homemade tent forts that I built a long time ago! This atmosphere encouraged deep conversations and sharing, however, the greenhouse effect was not good for my spoon conservation and therefore my energy was sapped by the end of the meal.

The Pudding Shop serves vegetarian and 'very vegan' meals. Please note that while these meals a…

Cramping my style

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I got spasms, they’re multiplying
from my foot up my leg!
And the pain it’s supplying...
It's electrifying!

At least once a week I sing this song. I experience foot and leg cramps in the late afternoon or early evening, but it also occurs at other times of the day. It's frustrating and at the height of the pain, I cannot move or walk. At times, I think I know what is wrong but at other times it's a mystery to me. I feel that prevention is always better than cure, therefore, I try to identify something that is causing the cramps and then put strategies in place to help.

The main causes of spasms for me are:

·         Exercising or overuse of muscles (1)

My solution: Rest and Stretch
This can occur when I have exercised to the extent of muscle fatigue that simply brushing my teeth causes cramps in my arm. It's not an electrolyte imbalance but just MG. It's a sign that it's time to recha…

Mindfulness Challange

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Reality TV vs. staying connected

I love watching reality TV.  From the adventures of the Amazing Race to Survivor as well as to Say Yes to the Dress, I love it all! From the drama of Dance Moms to the triumphs of the Biggest Loser, I cheer on the characters and share in their heartbreak.It is one way I can experience it. I can imagine cooking on Master Chef and being the one picked in the final rose ceremony of the Bachelor. It's a great distractor and opportunity to disconnect from reality.

The downfall is that this is not my life. These are not my traumas or joys, and while I would love to travel to Norway and see the Northern lights, my reality is slightly different. I don't have enough spoons to do everything that I want to do. The important question I asked myself was how can I live an authentic life when I am so tempted by these fairy tales? How do I enjoy other people’s success without allowing…