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. 

VULNERABILITY TO BE ABUSED (EIGHT OF A SERIES)

Waiting...always having to wait

As much as I don't like to write about this, and as sad as it may sound, —as I mentioned in my previous post-https://www.blogger.com/blog/post/edit/4038844228930111664/7626586630965434636 "LOSS OF INDEPENDENCE (SEVENTH OF A SERIES)" —, it is true: Persons of any age who have lost their independence due to disability, be it mental or physical, are vulnerable to be exposed to abuses. Be it in institutionalized care settings or in their own home.

Of course, there are different ranges and types of abuses. Some, of them, are so horrific that they will make your hair stand on end; for example, being kicked or hit, or even worse, being sexually abused.

Others are not as terrible, but still bad enough to make the disabled person realize, that she/he has lost all possibility to fend for himself.

For example, let's say that the care provider acts as if she/he does not hear what the patient is saying or asking for. Or, does things differently than asked or instructed; or, takes time and delays doing what is requested. Or, simply ignores doing it. Any of those attitudes could create an imbalance of power between the care provider and the disabled person.

Based on my own situation, I can tell you that my experiences in dealing with caregivers have taught me that in truth, things are done the way the caregiver chooses. I may lay out my instructions all I want. . . And they will execute them to their convenience.

I have not suffered any horrible abuse, but I have learned to wait, accept, adjust, take deep breaths and hold my temper, smile, and thank their attention always no matter what. In other words, to be 'the patient'! Ah, and let's not forget: be always ready to pay. Pay as much as they demand because that is the only way a disabled person can get some help. 

Living with this reality harms the disabled person's dignity and increases the feeling of helplessness, making the dependent person feel end.       

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE (Seventh of a series)

Physical Disability and Depression Journals.plos.org

LOSS OF INDEPENDENCE

One of the skills most appreciated by an adult person is the fact of being independent.

The definition of 'independent' as found in Dictionary.com is:

"Not subject or contingent upon something else for existence, operation, etc."

In other words: Freedom to come and go as needed!  Sovereignty to provide is it for oneself, or for the family.  Autonomy to choose the schedule, work, own way, and the how, when, and where of living. All of which are psychological factors that empower the human spirit by nurturing the sentiments of our self-confidence and self-esteem.

Debilitating illnesses such as #Muscular Dystrophy — even in its mildest forms as #Miyoshi myopathy which is the one that I have been suffering from since more than 20 years ago, — are well known to cause a significant decline in the ability of an individual to perform daily routine tasks as simple and essentials as, personal hygiene, eating, or even bowel movement or sphincter control. Thus causing at the lapse of some years that a person who once was the breadwinner of the family, the strong one, the active, the responsible, is now a frail 'disabled dependent'.

A very hard pill to swallow as you can understand by the definition of 'dependent' found on Dictionary.com is:

"Subordinated, appurtenance, an annex, not an integral part."

Especially when you apply those terms in reference to a disabled person, you could say that Subordinated means: A person that requires the help of another person to be able to change position, get cleansed, or be fed. In other words: to live.

Like a child! 

With the difference —the enormous difference! — that a dependent baby is lovable and cute and small and easy to maneuver while the adult is heavy, stiff, cranky, and not so lovable and easy to manage. 

This change of status imposed upon a sick but still conscious adult by the everyday increasing inability to perform basic living activities causes, not a too long time after, the loss of any social role, and, thus also, the loss of identity and respect as a person. 

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE (Sixth of a series)

 SOCIAL ISOLATION 

Charles Dickens referred to "isolation" as a "slow and daily manipulation by the brains' mysteries" which, he concluded, "is far more destructive than any torture to the body." Many studies confirm Dickens' observation attesting that the psychological changes derived from isolation are many and very damaging ranging from depression to psychosis.

I can righteously say that I was on top of the world by the time I reached the age of 50.  My job as Office Manager of a successful Health Managed Care Company provided me the money to live comfortably.  My second job as a social events reporter in the most prominent Hispanic newspaper circulating in Miami added the glamour. Everybody appreciated seeing their pictures and events published in my column. Everybody wanted to be my friend…everybody wanted me at their parties. I had become a social butterfly!  

I did not change my life pace the first years after I was diagnosed with #Miyoshi myopathy.   Rather overwhelmed with gratitude to God for the good luck that allowed me —not only to enjoy so many years of normal living but also, to have gotten "one of the mildest forms of muscular dystrophy", (according to the doctor that explained to my husband and me what Miyoshi myopathy was), I kept working as usual. 

Despite its mildness, the Miyoshi myopathy had me walking with a rollator after only two years after being diagnosed with it.  After five years, I had to stop driving. Which consequently made me stop working outside my home. In twelve years, I could not clean my home and by the thirteenth year, I had to stop cooking. Today, 25 years after being diagnosed with the "mild'  Miyoshi myopathy, I can barely move the tip of my hands. I am now a quadriplegic completely dependent on somebody else to help me live. And yes, you guessed it, I am also totally ISOLATED!   

I mentioned the above data so anyone reading this post will learn that I am not a weak whining person. On the contrary, I picture myself as a courageous individual. Courageous in the sense that my initial purpose has been to be strong, to inspire courage, and of course that when anyone expects to do that, it has to start by setting the example.  I have tried. I tried for many years. But now I must admit that I am exhausted.    

SOME SUFFERINGS COMMON TO THE FACT OF BEING NON MOBILE (Fifth of a series)

 The FEARFUL condition of IMPACTION! 

Over the past year, I have suffered some episodes of a near fecal impaction which I do not wish on anyone because it is not only unpleasantly scary but also, downright embarrassing if the help of a caregiver has to be required.

Getting impacted as I have experienced it,  means not being able to push out the feces, accumulated at the end of the intestines, which can become dry and hard making it very difficult for the colon to expel from the body using its normal contraction process.

People like me that have lost the ability to walk and cannot do exercises  —not even move around— are easy subjects of suffering constipation which in turn, can easily become 'impaction.' From my personal experience I can tell you that I can notice how the process starts developing; I can detect where in my intestine the mass is building up. Luckily, these experiences also have given me some knowledge in the matter and now I know some steps that help me achieve a somewhat decent bowel movement. And I will share them with you:

* I try to observe a regular schedule of going to the bathroom

* I am conscientious to drink the recommended quota of liquids

* I pay attention to eating enough nutrients

* I pay attention to eating enough fiber

* I pay close attention to the effects the medication I take has on my bowel function.

* Even though I am a quadriplegic I force myself to do some abdominal intestine exercises which are as follows: pull the stomach in as much as possible —count at loud from 1 to 8 as slowly as you can— let your stomach go. Repeat 3 consecutive times 3 times a day.

Everybody is different, so is up to each one of us to find out what our bodies need. Listen to your body. Some bodies do not need to go #2 every day, others do. Some bodies need different nutrients and vitamins. But if we pay attention to ourselves we will be able to decipher our needs.

Now, an important device that I recommend to every handicapped person is an electric bidet seat. It not only helps to keep the person clean but also provides an option that allows to irrigate the anal passage and stimulate the colon.