https://vimeo.com/187744832
The following link will take you to a video I made addressing some questions about MD and the equipment I use. I apologize because after viewing the video I realized I answered the second question but I didn't do a very good job at answering what a typical day looks like for me.
What does a typical day look like for me? Well everyday is different. Having three kids I don't get the amount of rest needed which can make me super tired and super cranky. I have to be aware constantly of my responses. Just ask my sweet family I'm not always perfect at this :(. Its like somebody trying to function daily on an hour of sleep. I struggle with getting dressed particularly getting my legs through the pant hole, or putting on my socks. This is from my legs being weak and not able to stretch or lift. I have to remind myself to eat often. It is a chore to eat because it requires so much work and effort of those particular muscles. Everything needs to be chewed well and broken down because my swallowing muscles are weak and food gets stuck and causes choking and aspirating. I need to take in a ton of calories because my muscles are constantly atrophying and I can not keep weight on. I have to concentrate on my walking to avoid falls, I have to rely on others to open cans, lift objects, bend down for me etc. I have been blessed with many helpers Though and a great team who help out a ton. When I don't have doctors appointments I love to meet with friends, get out of the house to soak in the sun, go to Chik-Fil-A, go on dates with my hubby, spend time with my family, and enjoy church. I hope this gives better insight into my days and the challenges with MD. Keep asking those questions. I feel blessed if I could help even just one person. I love educating people and I'm hopeful that more and more research will be done in the future to hopefully make things easier for not just myself but for Noah and kids his age and younger who are dealing with the hard symptoms of Desmin Myopathy.
God Bless,
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