AT LAST! A POOL FRIENDLY TO AQUATIC THERAPY

As I said in my previous post, after our Georgia experience, finding a home in a community with a pool, friendly to aquatic therapy, was a must for us.
Sun City Center in Florida offered that. Its walking pool was exactly what we were looking for: 51 Feet long by 38 Feet wide and 3 1/2 Feet deep on the outer edge and 4 1/2 Feet deep on the inside at the center of the pool; under roof, with a water temperature of 89 to 92 degrees and a hydraulic lift that made it possible for my husband to get me in and out of it.
We started going to the pool immediately! It was a tremendous effort on me as well as on my husband, because we had to do so many transfers. 1. - Get me into our car; 2.- Take me out of the car; 3.- Lift me from my wheelchair into the lift chair and then, after we were done at the pool, do all three steps in reverse. At first I was terrified not only by having to transfer so many times but also of standing in the water. Not being into a pool for over 18 months had erased my muscles' memory on how much easier was to stand in the water. It took me some three weeks to feel confident and truly enjoyed the experience. But I was doing it!!
Remembering the words of advice of my doctor: 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. I was careful avoiding burnout, luckily God sent me an angel to coach me. Among the users of the pool was a gentleman that knew many exercises to help strengthen the muscles and he was kind enough to teach them to me. So, little by little I started gaining my strength.  Some days I was able to walk twice around the perimeter of the whole pool. I was thrilled; my husband was thrilled, even many of the other good people that exercised in that pool were thrilled with my improvement!  
My good fortune lasted until my husband's took his aneurysm annual scan. His cardiologist told him that the aneurysm had grown and it was time to do an Endovascular repair, which is a procedure that helps reinforced the weakened section of the aorta to prevent rupture of the aneurysm. His first recommendation was not to lift heavy weights: 'You are a ticking bomb' he said 'any effort can set you up'. We stopped going to the pool.
Again, the only way I had to exercise my muscles was interrupted. Again, my muscles were left to forget what they were supposed to do… "If you don't train your muscles, they won't be able to produce the force necessary to do it, even though your nerves know exactly which order to activate," Said Malene Lindholm, a molecular exercise physiologist at the Karolinska Institute in Stockholm. Original article on Live Science.
It was then that I began thinking on how convenient it would be to have your own little pool at home. But at the same time I also realized that in order for a handicapped person like me to use a pool even at home, a lift would be needed and then of course a person to help the handicapped get on and off that lift also would be a must! In other words: MONEY, LOTS AND LOTS OF MONEY!!!


ARTICLES YOU MIGHT LIKE TO READ
https://www.wrightpt.com/aquatic-therapy-principles/
https://www.endlesspools.com/news/article/muscular-dystrophy

LOOKING BACK

I very much regret not doing Aquatic Therapy since early diagnosed.

OTHER IMPORTANT DEVICES

Life is a constant succession of challenges. And those challenges seem to triple when you are handicapped. But the universal advice to confront life's challenges is the same for able and disables:  SMILE!!!

So, since I could not go to the pool to do my aquatic exercises I would like to at least get a good night sleep. I was now in year 18 of dealing with Muscular Dystrophy.  My muscles were losing power by the day (or so it seemed to me) I was finding it very difficult to turn myself one way or the other while in bed. Not being able to change position is hard at any time but at night, the darkness and the quietness made it terrifying. I began to have very bad nights; I couldn't find sleep or even worse, in the little periods when I went to sleep I would have nightmares which made me wake up screaming. This very difficult situation made me think that I needed a special bed. Someone told me Medicare would give handicapped people a hospital bed so I started researching that idea.
I found out that if you are a Medicare beneficiary enrolled in Original Medicare (Part A and Part B) your Part B benefits may cover 80% of the allowable charges for hospital beds after you meet your Part B deductible. YOUR doctor, as well as the durable medical equipment (DME) supplier must participate in the Medicare program. Getting Medicare to cover a hospital bed at home is not a process you get done in one day. First, a doctor must deem the hospital bed necessary, and therefore, prescribe it for use in an individual’s home. Prior to being issue with a prescription for the hospital bed the patient will have to be submitted to a face to face evaluation with a physician’s assistant, nurse practitioner, clinical nurse specialist, or physician. During this encounter, the physician or practitioner must document in the patient’s medical record: 1. An in person face-to-face examination with the treating practitioner (Medical Doctor (MD), physician assistant (PA), nurse practitioner (NP) or clinical nurse specialist (CNS)) and, 2. The treating practitioner must document that the beneficiary was evaluated and/or treated for a condition that supports the need for the item(s) of DME ordered; and, 3. The face-to-face examination must have occurred sometime during the six (6) months prior to the date of the order for the item.
Also, since Medicare does not pay for full-electric hospital beds under just any circumstance, The following qualification criteria need to be documented in the patients’ medical record notes to qualify for the prescribed equipment. 　Note: face to face and justification notes are valid for six months.

Electric hospital bed: One of 1-4 AND 5 need to be sufficiently documented to support the need for the prescribed equipment.

1. Explain the patient’s medical condition that requires positioning of the body in ways not feasible with an ordinary bed. Note: Elevation of the head/upper body less than 30 degrees does not usually require the use of a hospital bed. Or

2. Explain why the patient requires positioning of the body in ways not feasible with an ordinary bed in order to alleviate pain.　 Or

3. Explain why patient requires the head of the bed to be elevated more than 30 degrees most of the time due to congestive heart failure, chronic pulmonary disease, or problems with aspiration: Or

4. Explain why the patient requires traction equipment, which can be attached to a hospital bed. AND

5. Explain why the patient requires frequent changes in body position and/or has an immediate need for a change in body position. (https://homehealthunited.org/professional/hme/documentation-needs/electric-hospital-bed/)
In order to expedite the process it is imperative for the patient or family to find a reliable supplier. Working with an experienced supplier of durable medical equipment (DME), who is well aware and knows the Guide to Medicare Coverage will increase your chances of getting coverage in a timely manner.

It is VERY IMPORTANT that the patient that is going to use the bed pays a lot of attention when choosing the kind of mattress. Please stay tuned for my next post discussing about different types of mattresses. 

ARTICLES YOU MIGHT LIKE TO READ

https://medicare.com/coverage/medicare-cover-hospital-beds/
https://dmeevalumate.com/CMS

LOOKING BACK

I should had looked into getting a hospital bed earlier

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.