THE IMPORTANCE OF GETTING AS EARLY AS POSSIBLE THE THERAPY AND DEVICE THAT COULD HELP

Standing like a normal person!!!  Here I am standing up, something I had not been able to do since 2011 the last time I had aquatic therapy in Georgia. This picture was taken at Lake Forest Health & Fitness Center which I had the opportunity to enjoy while I was visiting my daughter.


One of the doctors that saw me in the early stages of my Muscular Dystrophy and to whom I asked if exercise would be beneficial for my illness, responded to me that I should exercise with caution. He went on to explain that because Miyoshi Myopathy stops the ability of the body to produce the dysferlin protein (which is a component of the muscular fiber membranes), I should highly value the dysferlin supply I still had. Spend your actual supply of dysferlin -he said-, with the same prudence as you would spend money in a savings account that you know you will not be able to replenish. Thus, my interest in Aquatic Therapy! Aquatic therapy in a heated therapeutic pool (90°F to 92°F) is said to help in many ways. For one, the buoyancy of water decreases the amount of weight bearing causing less stress in the joints; the warm water helps increase circulation, respiratory rate, muscle metabolism, strength, flexibility and ease of movement and also, helps to relax muscles and vasodilators vessels increasing blood flow.
Sandy Oeverman, CTRS, ResCare Premier says: The water is an ideal environment for muscle reeducation for individuals with neurological impairments. The resistance of the water provides people with cognitive deficits extra time to respond because the body will naturally move slower in the water. (https://www.brainline.org/article/why-aquatic-therapy)
Deb Cox says: Aquatic exercise is a low impact tool that yields high impact results with limited joint stress and muscle fatigue. Water creates a safe environment where anyone can achieve a great workout without risking injury. Water exercises also have the amazing ability to speed up recovery from an injury or maintain health. (https://www.swimex.com/residential/blog/aquatic-exercise-the-ultimate-workout/)
I wish I had done more aquatic therapy the 5 years I lived in Georgia, because now it has been 18 years since I was diagnosed with muscular dystrophy and my muscles have suffered great waste.  Moving back to Florida, my husband and I were determined to find a home with a community pool friendly to aquatic therapy.

ARTICLES YOU MIGHT LIKE TO READ

https://www.goodshepherdrehab.org/services/orthopedic-rehabilitation/aquatic-therapyhttps://www.webmd.com/fitness-exercise/news/20000719/aquatic-therapy-people-disabilities#1

LOOKING BACK:
I wish someone had reinforced upon me the importance of getting, as soon as possible, the therapy and the device that could help.

A COSTLY LESSON

Tags:home accessibility, weather sensitivity, neighborhood remoteness impact

After my husband retired, we moved to Georgia. What attracted us was that the prices of homes were far less than in Florida, and in some counties the property taxes also were favorable to senior residents.   

We chose to live in a charming remote community in north Georgia none the less! It was surrounded by mountains with romantic steep streets twisting and turning among the woods. We found this huge house at the top of a hill -4 bedrooms/3 1/2 baths- which was being foreclosed so we bought it! Its three levels required that we install an elevator. It was an outrageous expense for us but we were sure that the beauty of the place was worthy of it. From our deck we could see how the Appalachians Mountains meet the Blue Ridge. We were sure we had found our dream home.

Until, reality woke us up from that dream. Winters in north Georgia were not the mild refreshing temperatures we had created in our minds, they could be very harsh, especially when it rains and the air gets below 32 degrees Fahrenheit at the surface, thus creating ice. Yes, the very fearful black ice!

I also started to notice that the cooler the temperature got OUTSIDE, the stiffer I would get; no matter how warm it was inside the house my personal thermostat was set by the external temperatures. Another great fear we experienced in 'our mansion' was realizing that when we lost electricity, we could not use the elevator so I would be left practically trapped in the house.   I have to say, that Amicalola, the company providing our electrical service was great and seldom went without current.

The greatest downside of our 'nest in the mountains' was its remoteness, due to which, public transportation in our community was nearly unheard of, much less special transportation services. I had been recommended to get 'aquatic therapy' and because of the problems with transportation I went without it.

I think that because of the lack of the necessary therapy my ability to walk decreased causing me to fall easily; within 5 years I became wheelchair dependent.

At this point we decided to move back to Florida. My experience with our beautiful house in the mountains taught me that although many things seem to be a lot of fun, those suffering disabilities should:

*Get on time the therapies service recommended as well as the durable medical equipment needed

* If possible, avoid living in a remote area

* Try to live in a house with no stairs

* Be aware that cold weather could affect you.

ARTICLES YOU MIGHT LIKE TO READ:

https://www.redfin.com/blog/the-ultimate-guide-to-home-accommodations-for-persons-with-disabilities

https://www.unpakt.com/blog/7-moving-tips-for-people-with-disabilities/

http://www.home-healthcare-adaptations.ie/

 

LOOKING BACK

I often think that I should had pursue doing the aquatic therapy

BECOMING 'DISABLED'

TAGS: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. It so happened that the county we moved to did not have that kind of services. This reduced my independence significantly. 

ARTICLES YOU MIGHT LIKE TO READ:

https://www.thearc.org/what-we-do/public-policy/policy-issues/transportationhttps://adata.org/factsheet/ADA-accessible-transportation
https://www.nadtc.org/news/blog/

LOOKING BACK:

Should I have paid more attention to the special needs my illness was pushing me into?

SHOULD I CLAIM DISABILITY?

Tags:early retirement, Social Security benefits, disability benefits, home health help,

Some seven years after being diagnosed, Miyoshi Myopathy (Muscular Dystrophy), had definitely changed my lifestyle.  I could no longer do the work my full time jobs required but since I had to pay for half of our mortgage payments I was working part time. I worked practically until I had to give up driving.

 

My husband and I talked about my options. To apply for disability benefits, we understood that one of the requirements was not been able to work for at least six months previous to the application. I did not feel secure not receiving a monthly income for that long, plus when I compared myself to other disabled people I had seen, I felt my impediments were not that terrible. I was afraid that if I claimed disability I would be taking away the opportunity from someone more needy than me.  And again the thoughts that 'I had lived my life and it might even be that some of my problems are plain and simple due to aging,' made me set aside the idea of doing more research about disability benefits or consulting a lawyer about it.

 

I have not been exactly 'financially savvy' but I think I am a responsible person. Since I divorce my first husband I managed to keep a modest sum of money that I use only on special occasions; I was paying 50% of the mortgage of the house we were buying, so I had 50% of the equity we were accruing, and through my 20 years of work I had earned the needed credits to get Social Security.  So I decided to apply for early retirement.

 

The truth is that 10 years later my condition prostrated me. I could not get out of bed by myself, sit on the toilette, take a shower, do my bed, much less cook or keep the house clean.

People were telling me that Social Security would send a person to help me with all those chores. Someone had said they knew this sick person and that other one getting home health aid twice a week or even everyday in their house all paid by the Government.

I did some research and discover that the program they were talking about is Medicaid. I understood that a person needs to be near destitute to get Medicaid.

 

 

ARTICLES YOU MIGHT LIKE TO READ:

https://www.ssa.gov/planners/disability/qualify.html

https://www.disabilitysecrets.com/retired-draw-disability.htmlhttps://www.disabilitysecrets.com/page5-13.html

LOOKING BACK

I wish I had consulted a lawyer before deciding to apply for early retirement.

 

MUSCULAR DYSTROPHY ASSOCIATION

TAGS: neuromuscular disorders, muscular dystrophy, grants, 

The use of a walker did not inhibit me from fulfilling my daily routine. I was still able to drive; for a good number of years I was capable of folding up my walker, place it in the car's trunk and take it out whenever I needed it. I kept my jobs, both of them. I did my chores at home: made my bed, cooked, washed dishes. I also was able to go on vacations with my husband or even by myself to visit my children and family.

But of course, it was not as easy as before. The difficulties I was experiencing had made me very sensitive to the sufferings of people with Muscular Dystrophy. For that reason I paid so much attention to a call I received at the office from a person inviting my boss -a well known Miami lawyer- to be 'jailed' in a program organized by the Muscular Dystrophy Association, in which the 'arrested' called his friends and family to ask them for money to pay for his/her freedom. All the money collected goes to benefit the causes of the association. One of those causes being funding Grants to research: "promising theories and therapies that may accelerate treatments' to those living with neuromuscular disorders".

My boss allowed me to take his place. I did.  Muscular Dystrophy sent an officer to arrest me. I was 'jailed' and I made calls to my friends and family asking them to help me pay my bond.

As a reporter for Diario Las Americas I had many followers; many of them were glad to collaborate with me to pay for my freedom; soon I had collected the money needed.

That was the first time that I helped raise money for Muscular Dystrophy Association's fight against that terrible disease. After my 'imprisonment', I organized luncheons and events for that purpose. Definitely more money than the raised by my children on those distant little carnivals at our front yard in Washington, but with the same enthusiasm and love.

ARTICLES YOU MIGHT LIKE TO READ:

https://www.mda.org/

LOOKING BACK:

I often reflect on how, before being diagnosed with MD, I seldom thought of the need of research on rare diseases and its costs.

GETTING ACQUAINTED WITH MUSCULAR DYSTROPHY

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.phplongtermcare.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 my 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 a 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 Dr. Walter Bradley at University of Miami. Dr. Bradley is recognized as an 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 numb but strangely, it is also very sensitive to touch and cold temperatures. Many times I think that having the biopsy done has caused me more pain than benefits.

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 and forgot about Jerry's children.

I do not remember which one of the doctors 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/health/treatment-tests-and.../muscle-biopsy


LOOKING BACK:
I regret not having kept a well documented file with doctors' names, opinions and dates.