UPDATING THE ADVANCEMENT OF MUSCULAR DYSTROPHY IN MY BODY - STAYING AT HOME.

 Every day I tried to follow my schedule as much as possible. I would start my day by praying. Afterward, I would organize, dust, wash, sweep, cook, read, and write week in and week out, to the point that in six years, I was able to present my book, 'The Visit and Other Short Stories' to my beloved friends in Miami, FL; I also helped to get our Florida house ready for sale and, after selling the house, helped with the necessary packing so we could move to Georgia.

UPDATING THE ADVANCEMENT OF MUSCULAR DYSTROPHY IN MY BODY - LIFE WITHOUT A CAR.

The first days after I gave up driving, since I was not even able to climb up to get on a bus, I thought I would feel trapped staying at home. Thanks, to God, though, I have been a resourceful person and was able to manage to reorganize the use of my time.

I started by reviewing which tasks I was still able to do. Then, I did my schedule. On Mondays, I would clean what we called the TV room, the office, and the guest bathroom. On Thursdays, I would do our bedroom and bathroom. I would cook on the weekends when my husband was at home in case I needed help.

After the chores, I would relax, check my e-mails, make a couple of calls to family and friends, and read and write every single day. 

UPDATING THE ADVANCEMENT OF MUSCULAR DYSTROPHY IN MY BODY - GIVING UP DRIVING.

The first years after I was diagnosed with muscular dystrophy, I was able to keep driving my automatic car. However, gradually, my legs were losing the strength to pick up my feet to press the pedals. For some time I recurred to some clever inventions such as quickly pulling up my right leg with my hands in order to use my right foot to operate both, the accelerator pedal and the brake pedal. Still, the fear of being responsible for causing an accident that would injure an innocent person, made me give up my driving privileges. 

After that noble decision, I depended on somebody else to take me where I needed to go. Little by little, that dependency added to others similar or worse, has eroded my self-esteem. 

UPDATING THE ADVANCEMENT OF MUSCULAR DYSTROPHY IN MY BODY

 When I started writing this blog, my stories were long. As I have lost physical skills, I have been shortening them. Now I can barely write four lines because Muscular Dystrophy has turned me into a paraplegic and I can only move my fingertips.

20 +YEARS AFTER I WAS DIAGNOSED WITH MIYOSHI MYOPATHY- (TENTH OF A SERIES)

 When I was diagnosed with Miyoshi myopathy 20+ years ago, my doctor informed us (my husband and me) that up to that moment, there was no treatment and therefore, no cure for muscular dystrophy. Luckily for me, he said, Miyoshi myopathy was one of the mildest types of muscular dystrophy. His opinion was accurate if we consider that my dystrophy took 20 years to destroy me. 

Let's see. In the first 5 years of my diagnosis, I lost the ability to climb stairs, wear high heels, and dance.

Since I did not know what 'muscular dystrophy' meant or caused to its patients, I joined the Muscular Dystrophy Association in seek of advice. I was shocked to learn that MD affects children. My heart was torn, and I vowed to help the MD organization in its fundraising of research to find therapies and cures. For this purpose, I participated in their events and publicized them in my social column in 'Diario Las Americas' the newspaper in Miami which I worked for. 

I also sponsored an annual luncheon, during which a representative of the Muscular Dystrophy Association lectured the assistance on the purpose of the association. These luncheons included auctions of art exhibits from well-known local artists, donated by their authors or owners, so all the proceeds would be for the benefit of the Muscular Dystrophy Association.

At the same time, I went happily on with my life; I worked as much as I could; party and traveled with my husband, as much as I could, and enjoyed my children and grandchildren as much as I could.

By year 10 of my diagnosis, I could not stand up without my walker, much less walk without it. 

Anyway, since my husband was getting ready to retire, and we were moving from Florida to Georgia, I managed to prepare our Florida house for sale, staged it, and shared the packing task with my husband.

Once we bought a house in Georgia, I did the same, but in reverse, shared the unpacking, and set our home up again.  

By year 15 of my diagnosis I could not sit, stand up, or walk, without another person's help.

My muscles were clearly losing the battle.  So, I learned new ways to keep my spirit and hopes high. I cut down most of my social activities, and so did my husband because he said 'he did not enjoy going out without me'. Since I always loved writing, I told myself it was time to organize my memoirs. 

By year 20 of my diagnosis, I had to be lifted into my wheelchair, toilet, shower, bed, or any other place.

Every day was harder for me to endure because every day added items to the list of things I could no longer do. And those items were getting very personal: I could not comb my hair, file my nails, clean my ears, or pick my nose. Just to mention a few.

Still, I managed to finish my book Ahora que Vuelvo, Madre and published it. 

Actually, I cannot move my legs or my arms. I cannot move anything other than the tips of my fingers. The lack of mobility has damaged even my nerves. This causes me to suffer neuropathy, a horrific constant burning sensation in my extremities. Also, since my skin is fragile I am always getting symptoms of pressure sores. I am extenuated, other than at the time I am asleep I don't find peace of mind anymore.

 

FINANCIAL EXHAUSTATION - (NINTH OF A SERIES)

 Balancing life and illness is tough, especially after 20-plus years of chronic, debilitating sickness. Being 'disabled' means 'not able' which includes not being able to work, to bring money your way. Trying to stretch the monthly income received to cover the monthly expenses a chronic illness demands, is a magical trick that no disabled performer can achieve. The result of that act is frustration. The recurrence of that act, month after month, spells desperation. A desperation that leads to a road whose perfect name could be Misery. To give you an idea of ​​the extra costs of living that people with disabilities have, following I will mention some of the devices that I use and their approximate cost:

1. Hospital bed. Mine is electrical=$900.00 * (Medicare provided)

2. Electrical Air Mattress =$3,500.00

3. Manual Hydraulic Hoyer Sling lift=$600.00 * (Medicare provided)

4. Electric massager to improve circulation =$70.00

5. Wheelchair - Mine is manual=$800.00

6. DeJourns electric lyft motor and track system=$4,800.00

7. Bidet - requires electricity=$245.00

8. Shower Chair - =$140.00

As you can see, although some of the devices were provided by Medicare, all the special electric equipment uses lots of energy, which increases our electricity bill. And the manual ones require an assistant to operate, so, at this point, I am still determining which one is more expensive. I hear people saying that if you are handicapped, Medicare sends help to bathe you, cook for you and clean your house and wash your clothes, but it is not quite like that; only Medicaid recipients get that benefit.