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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.

Saturday, February 9, 2019

GETTING ACQUAINTED WITH MD


After being diagnosed with MD, good luck accompanied me for some time. I kept living my life almost as normally. I kept the two jobs I had.

My limp though became heavier. Frequently I had to cut short the walks that my husband and I used to take in our neighborhood; eventually not being able to take them anymore. Same thing when it came to doing exercise or even slow dancing, I got tired quickly.  Also, I had to spare high heels; I could no longer manage to wear them. And I had acquired a gait.

Some 3 years after being diagnosed with Miyoshi Myopathy, my doctor thought I would benefit by using a mobility aid device and gave me a prescription for a rollator.  When I got it I was very happy because using it gave me a sense of security.

One thing is worth mentioning: Little time after my doctor prescribed me the walker, my husband and I discovered that the use of a walker or even the fact that you have been prescribed one, might prevent you from getting Long Term Care Insurance.  So I wanted to point that out to my readers.

After getting the walker rollator I applied for a disabled person parking permit.

Slowly but surely I was being aware of what Muscular Dystrophy could do to a person's life and the changes were not fun; I imagine that people who are forced to navigate a mine field would understand what I mean.

ARTICLES YOU MIGHT LIKE TO READ:

http://www.aaltci.org/long-term-care-insurance/learning-center/are-you-even-insurable.php

longtermcare.gov/medicare-medicaid-more/medicare/

https://www.dmv.org/disabled-drivers.php

https://www.webmd.com/pain-management/handicap-parking

LOOKING BACK:

No one knows the level of incapacity one will get, therefore, I advise to plan the future with a realistic perspective for it is better to be over prepared than not.

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