BECOMING DISABLED

TAGS:muscular dystrophy, special transportation, ADA-accessible-transportation

The muscular dystrophy caused by Miyoshi Myopathy to my body, progressed year by year.   Some 6 years after been diagnosed with muscular dystrophy I could notice a big difference: It was hard for me to get up from sitting, I could not walk without my walker-rollator and I got tired easily.  I started thinking about giving up one of my jobs.

I also knew my days of being able to drive were coming to an end. I had to lift my leg with my hands in order to use the brakes. My husband kept telling me I should quit driving, but it was a hard pill for me to swallow because I knew that doing so, I was giving up my freedom to go places. Finally, the responsible part of my person helped me understand that if I kept driving I was endangering not only myself but other people as well, and I did not have the right to do so. So with pain in my heart I gave up my car's key.   

It was time for me to enroll in 'special transportation'.  

Many of my friends urged me to ask God to reverse my illness. I asked them to instead, help me pray for the miracle of finding a cure for Muscular Dystrophy because I think it is the children affected by MD who get their lives felled too early.

People used to tell me I was an inspiration, I did not understand why. I already lived life, had my beautiful children, even…, married twice! I was still able to do my home chores, I swept and mop the floors as usual, I cooked,  I did not have any problem taking showers, getting dressed, brushing my teeth. The thought of one day not being able to perform those normal tasks never crossed my mind.

At that time we lived in Miami, Florida. A dear friend of mine, a lady in her eighties told me about Special Transportation Services in Miami Dade, she even gave me their phone number. I called and asked them how I could get the service. They sent me an application. Soon after I send it back I was given an interview during which my photo was taken. Few days or weeks later I don't remember now, I received my member card.

STS provided me fantastic services at very low cost.  Unfortunately my husband and I decided to move to Georgia to a county that did not have that kind of services. This reduced my independence significantly. 

ARTICLES YOU MIGHT LIKE TO READ:

https://www.nadtc.org/news/blog/

https://www.thearc.org/what-we-do/public-policy/policy-issues/transportation

https://adata.org/factsheet/ADA-accessible-transportation

LOOKING BACK:

Maybe, I should have paid more attention to the special needs my illness was pushing me into.

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.

MY FIRST SYMPTOMS

At 56 I thought life was good. My youngest daughter had graduated from High School, my three older children were happily married and I myself was a newlywed (second marriage). But I had this little bother, this little annoyance…nothing drastic. I did not have pains, muscle cramps or fever; no nausea or dizziness, just a difficulty to climb stairs, to rise on my toes or to endure long dances!

I postponed scheduling an appointment with a doctor because in my heart I suspected that my symptoms were the inevitable signs of approaching old age and I was in no hurry to have that confirmed. Besides, I was truly very busy. I worked as a legal secretary during the day and as a social reporter for Diario Las Americas, the largest Spanish newspaper in the United States of America, in the evenings and weekends. Reluctantly, I scheduled an appointment with my primary doctor.  

Dr. J.H. a wonderful physician and a kind person had been my doctor for some time. He reminded me of my grandfather. He listened to my complaints and took notes of the problems I was experiencing.  Then, he asked me to walk up and down the corridor in his office while he observed me closely. After that, he advised me to visit a neurologist.

DIAGNOSIS

The neurologist I visited was Dr. Raul Lopez. I was pleasantly surprised when he told me he had read my social column in El Diario. In reference to my ailments he told me that I needed to have some tests. I don't remember if he ordered a new blood test, but I remember the EMG or Electromyography; an over an hour test where sensors are placed on your skin in order to measure the ability of the motor neurons to send electrical signals. Also, a thin needle electrode is inserted through the skin into the muscles to evaluate the electrical activity in your muscles when contracted and when at rest. It is not painful but I thought it was nerve wrecking because it is slowly done all over the body.
After that exam, Dr. Lopez referred me to another doctor, Dr. Walter Bradley at University of Miami. Dr. Bradley is a recognized authority in the fields of amyotrophic lateral sclerosis, peripheral neuropathies, inflammatory myopathies and muscular dystrophy.
I think it was Dr. Bradley who told me I needed a Muscle biopsy. This is a painful test that required anesthesia and was done at the hospital by yet another specialist. During this test, a piece of muscle tissue is surgically removed for laboratory analysis which may reveal abnormalities, such as inflammation, damage, certain proteins or enzyme deficiencies.  To this date, the section of my thigh where it was performed is very sensitive to touch and cold temperatures. Many times I think that having the biopsy done has caused me more pain than benefit. 

After those exams I was diagnosed with Miyoshi Myopathy a 'rare form of the rare disease Muscular Dystrophy.'

I knew very little about muscular dystrophy. Nobody in my family had ever been diagnosed with it, nor even any friends or acquaintances. The only contact I had experienced with Muscular Dystrophy was a faded recollection hidden way down my memory of helping my children to hold and sponsor a little fair or carnival that they had seen promoted on TV for the benefit of Jerry's children. We were living in Washington, DC and my oldest boy was at that time, 8 or 9 years old. Watching young people affected with MD moved him to the point that he wanted to help raise money for Jerry's cause. He engaged his siblings, a girl 6 and another boy 5- in the project and did it in our front yard. The event came out very successful.  They did that for a couple of years then we moved to Panama, Central America and forgot about Jerry's children.

I do not remember which one of the doctors I visited told me that I had Miyoshi Myopathy "one of the mildest of the known muscular dystrophies," he said.  To my husband's question of how incapacitated I could become and if I  was going to be using a wheelchair, he answered that my illness would progress slowly and  if I ever came wheelchair bounded I probably would not have strenuous problems transferring, let's say, from wheelchair to the toilet or from the wheelchair to the bed.  My husband sighed with relief!

ARTICLES YOU MIGHT LIKE TO READ:

https://rarediseases.info.nih.gov/diseases/9676/miyoshi-myopathy
https://www.healthline.com/health/electromyography
https://www.hopkinsmedicine.org/healthlibrary/test_procedures/orthopaedic/muscle_biopsy_92,p07671


LOOKING BACK:

I regret not having kept a well document file with doctor's names, opinions, dates etc.