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.
