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20 years ago I came face to face with a monster! I was diagnosed with Miyoshi Myopathy, one of the many forms of Muscular Dystrophy. Little by little, that illness has fettered my life turning simple routine tasks into strenuous activities, basic needs into demanding efforts; not to mention the financial burdens such as, acquiring special equipment, special transportation, and special care! The desire to write this blog stems from the thought that sharing my encounters will prompt others to leave their comments or tell their own experiences and that by sharing our struggles we could find solutions. I firmly believe that it is important to lay bare the challenges a degenerative illness brings to those affected —as well as to their families. I have to let my readers know that English is my second language, which I love, but do not fully command, so I ask for your understanding in case of grammar errors that I might not be able to catch.

Friday, April 5, 2019

THE IMPORTANCE OF GETTING THE THERAPY AND DEVICE THAT COULD HELP, AS EARLY AS POSSIBLE .


Standing like a normal person!!!  Here I am standing up, something I had not been able to do since 2011 the last time I had aquatic therapy in Georgia. This picture was taken at Lake Forest Health & Fitness Center which I had the opportunity to enjoy while I was visiting my daughter.

One of the doctors that saw me in the early stages of my Muscular Dystrophy and to whom I asked if exercise would be beneficial for my illness, responded to me that I should exercise with caution. He went on to explain that because Miyoshi Myopathy stops the ability of the body to produce the dysferlin protein (which is a component of the muscular fiber membranes), I should highly value the dysferlin supply I still had. Spend your actual supply of dysferlin -he said-, with the same prudence as you would spend money in a savings account that you know you will not be able to replenish. Thus, my interest in Aquatic Therapy! Aquatic therapy in a heated therapeutic pool (90°F to 92°F) is said to help in many ways. For one, the buoyancy of water decreases the amount of weight bearing causing less stress in the joints; the warm water helps increase circulation, respiratory rate, muscle metabolism, strength, flexibility and ease of movement and also, helps to relax muscles and vasodilators vessels increasing blood flow.
Sandy Oeverman, CTRS, ResCare Premier says: The water is an ideal environment for muscle reeducation for individuals with neurological impairments. The resistance of the water provides people with cognitive deficits extra time to respond because the body will naturally move slower in the water. (https://www.brainline.org/article/why-aquatic-therapy)

Deb Cox says: Aquatic exercise is a low impact tool that yields high impact results with limited joint stress and muscle fatigue. Water creates a safe environment where anyone can achieve a great workout without risking injury. Water exercises also have the amazing ability to speed up recovery from an injury or maintain health. (https://www.swimex.com/residential/blog/aquatic-exercise-the-ultimate-workout/)

I wish I had done more aquatic therapy the 5 years I lived in Georgia, because now it has been 18 years since I was diagnosed with muscular dystrophy and my muscles have suffered great waste.  Moving back to Florida, my husband and I were determined to find a home with a community pool friendly to aquatic therapy.

 

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LOOKING BACK:
I wish someone had reinforced upon me the importance of getting, as soon as possible, the therapy and the device that could help.



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