Health Care Vote Risks Health and Security of Disabled

Simply "repeal and replace". How simple.  How easily that rolls off the tongue.  Unfortunately, it reveals the insincerity of the purpose of the American Health Care Act (Current repeal and replace health bill in the house).  The President demonstrates over and over how little he understands the Affordable Care Act and the people who benefit from it.  He has never lived in the the trenches of every day life and has no knowledge what health care does for disabled people such as myself. This is the same man that mimicked a person with postures of limbs and movements somewhat like my own.  It is one thing to insult a sick man: it is another to presume to take the insurance coverage from a disabled man and his wife.

What is the Affordable Care Act?  While not literally defining or describing the details of the ACA, I am referring to the general nature of what is called Obama Care.  Obama Care was a first step toward making health insurance more affordable and more accessible.  It is a very important step in that direction, but it was hampered by changes suggested by conservatives and insisted upon by their members.  Though they gave that input and prevented this law from going as far as it needed to in providing better health care at a reduced cost, it was passed by the democrats with virtually no affirmative votes by GOP members.

The Affordable Care act is not health care.  It is a law which provides rules to govern health insurance and puts constraints on insurance companies that prevent them from providing too little coverage for the money spent by the consumer.  The ACA made sure women were able to have annual well care visits and mammograms, including labs, at no cost (provided by health insurance paid for by the consumer).

My wife, who cares for me as a permanently disabled person with a degenerative brain disease, lost access to health coverage when I was declared 100% disabled.  She has been forced to buy private insurance out of her pocket for the last 10 years.  She knows what the exchanges are about better than 90% of the politicians who speaks so negatively about them.  The Affordable Care Act is not in a death spiral--that is a marketing statement made up by politicians to plant the seeds of fear and doubt in the minds of everyday Americans. The Affordable Care Act is simply not a perfect law because it is not a single payer medical program that covers every American.  Obama care is a market-driven, pro-business health insurance law that requires insurance companies to give their customers something for their money.  It keeps them from denying coverage for Americans like my spouse who has conditions that they could deny her coverage for if she wanted to choose another vendor to buy from.  Women can't be charged more than their same age counterparts, as was historically customary.  It removed life-time caps on dollars spent per person that would cause financial crisis for seriously ill individuals with heart disease, diabetes, cancer or brain disorders such as mine.

"Repeal and Replace" gives the appearance of making Trumps' promises about health care come to pass. The truth is, he also said all people would have access to a lower cost, better product that gave each American better medical care.  The American Health Care Act (the Repeal and Replace bill) does not accomplish anything near that.  By their own admission, Republican members are asking their colleagues to first pass this bill, and then it would require a second and third bill to come forth to fix the problems it causes when implemented!

My coverage through Medicare is something I can count on.  This new legislation would increase my costs dramatically, I am told.   I am enrolled in a Medicare Advantage Plan that was put in place by President Bush and has been a very successful program.  This "repeal and replace" health care legislation threatens to undo that success from the Bush Presidency that was strengthened and continued by the Obama administration.

President Trump doesn't seem to understand what "repeal and replace" means.  He simply likes winning.  Winning for him means a big loss for regular people who have to actually pay for medical care that could cause a great financial loss.  We are very nervous.  But then, a man who makes fun of disabled people wouldn't probably understand that issue.  I mean that literally, not as a cheap shot.

Urge your congress person to vote "No" on this American Health Care Act. As always, I welcome your input and responses. -- Patient-Online

My wife deserves health care despite the loss of my career
and benefits due to a health crisis in my life. 

Inspiring Story of Missouri Tornado and Friends Rescuing Parents

My wife's mother, Mrs. Mary Lou Hynick, wrote a wonderful account of her and her husband Jim's experience during and after a tornado in Missouri.  Mr. and Mrs. Hynick (Dad and Mom!) live in the Ozarks in a hilly area near a large lake.  An unexpected tornado did hit hard just over a week ago, and in the aftermath, Jim's fellow firefighter's arrived in a surprise visit to bring relief.  This great story is used by permission from my Mother-in-Law, Mary Lou.  

"Monday evening we were watching TV and the show "Scorpion" was

interrupted with weather news.  We were in a tornado watch.  There was

a very large storm that was as far north as Nebraska, maybe further,

and went down into Arkansas and Oklahoma.  It was also very wide, with

lots of heavy wind cells and hail cells.  It was traveling at +/- 45

miles an hour, and going from south west to north east.  At about 9:30

the electricity went off and of course I was putting up candles and

getting the flashlights. The electricity was off for about 20 hours.

Shortly we could hear wind, loud, louder, and louder still.  So loud

you couldn't believe how loud.  We went to the basement and we were

there for about 40 minutes.  Lighting started and lit up the sky to a

completely white sky, no dark any where.  White with whiter bursts,

and this went on for about 25 minutes before we could see any dark at

all.  After about 40 minutes Jim went up and went outside, it was

raining.  And he told me we had quite a mess.

I looked out and there were shingles everywhere.  Our basketball stand

which had 200+ lbs. of sand in the base had been lifted up and moved

over to the deck and was on it's side.  Our BBQ, which is large was

covered and had been strapped to the deck rail.  It was on the other

side of the deck on it's side. Everything on the deck was moved from

the south side to the north side. We have a large umbrella with a base

that has 300 lbs. of sand + water-- it was up and lying on the deck

rail. Our propane deck heater is broken, but other than little things I

don't think much is broken.  Most of it is wrought iron or similar.

But a mess.

We have shutters off, but can be put back on.  Our house numbers have

vanished, some small things and some very large things are just gone.

We will have to have a new roof.  That seemed to take the largest

part of the damage.  One roofing company said they will come out and

give an estimate and our date is March 20 at 4:00 P.M.  No one else

has even called back.

Our neighbors up on the hill from us lost their siding, roof and

windows.  One has tree in his bedroom; one of our friends has broken

windows.  We are very blessed; we just need a roof . . . and then we

had help arrive.  The deputy fire chief, Ron Anselmo, came with a crew

of six and an Engine (engines contain roof ladders).  They spent three hours

covering our roof and putting shingles that were good on to help us

until we can get a new one. Our time with the department was paid back

in one afternoon.  I couldn't believe my eyes.  Our neighbors were

wondering what was going on: three fire department vehicles, two private

trucks and a whole lot of man power.  Our Lord answers prays that

haven't been sent yet!!!

We are both fine. We were not afraid-- I wrapped up in a blanket with

Jim beside me on the steps in the basement. We watched the lightning

from my craft room window and commented about it that it never let up

at all, just white and whiter, no dark sky at all.  I am amazed we

didn't get a lightning strike.

We have been told we would not ever have a tornado here as it is too

hilly.  Well, that isn't so.  But they don't happen often, so now we

know we may have to go to the basement if the weather isn't good.

We just thought you should know.  We know you watch the weather,

Laurie is seldom listed.  It was on the news about Mack's Creek, but

not Laurie. -- Love, Mom"

Thanks, Mom! We shared your story for two reasons:

1) It is so inspirational to read about the generosity of a community of people in our United States providing genuine support and help to dear friends, without their asking. 

2)  Mom is a great writer and she wrote a heart-warming and uplifting account in a wonderfully well-stated narrative.  We enjoyed it and thank you for sharing your writing talent! --Dan and Karrie

As always, I welcome your thoughts and responses. -- Patient-Online

Confusion Over Parkinson's Contrasted with CBS and MSA

This is Multiple System Atrophy Awareness month!

Go to MSA Coalition Page for More Info

I have quite often discussed with some of you in the family, and various friends, about the difference between Parkinson's Disease and the Atypical Parkinsonian disorders.  I am going to give you a few points to chew on, knowing you are the best ambassadors we have for spreading the word about these rarer forms of Parkinsonism.

Parkinsonism is a condition in which signs and symptoms of Parkinson's appear in the patient's disease.  Even though the person may not have Parkinson's Disease, they have a brain disorder that causes similarly appearing symptoms, including tremors, balance problems, stiffness, walking difficulty and cognitive changes.

Parkinsonism appears with Parkinson's Plus syndromes such as Multiple System Atrophy, Corticobasal Syndrome and Progressive Supranuclear Palsy.  Since I was first diagnosed in 2006, the neurologist I saw for ten years thought that my condition was one of these three.  As time went on, Multiple System Atrophy became the most likely.  All three of these conditions are determined to be "probable" in life, and are confirmed after death through a brain tissue study.

Even though I have  Parkinsonism it is not Parkinson's Disease in the simplest form because the disease process in my brain is more involved than in Parkinson's.  I have Corticobasal Syndrome (CBS), and it is uncertain if it would be alternatively considered Multiple System Atrophy (MSA).  These have overlapping symptoms and are best described as rarer forms of Parkinson's.

Has much changed?  Not really, except I have more clarity and certainty of the degenerative brain disease that has taken so much from our lives in the Brooks family.  We are fortunate to have this increased clarity because the neurologist I have been seeing of late is a Movement Disorder specialist, which is a doctor of Neurology who specializes in all things Parkinson's and Parkinson's-like.   She saw a clear indication in the results of my DaT Scan which demonstrated that I have Parkinson's Plus, not simply Parkinson's Disease.

Parkinson's Plus has long been the understanding of my condition.  I wrote about this in my book, I WILL GO ON: LIVING WITH A MOVEMENT DISORDER.  The confusion arises because the word "Parkinson's" appears in both descriptions of the diseases.  Technically, they are different in that Parkinson's Plus is a faster progressing disease and causes more disability sooner.

That is why I was unable to continue driving and had to retire at 51.  I have difficulty walking with coordination and I struggle with choking on food and liquids.  I also have digestive, urinary, heart rate, blood pressure regulation and body temperature issues.  These are not visible to friends and family so what appears to be a better day, could be a day I am having trouble with my blood pressure or having great difficulty coughing after drinking liquids.

I also have very abnormal horizontal eye movements which are caused by a loss of neurons in the area of the brain that controls eye movement.  At times I see double as a result. 

I am so glad that you are interested and are trying to grow in your knowledge.  MSA is a disease I have been identified with for 10 years or more.  I have CBS, but if it were to turn out to be MSA at some point, that would be a very similar prognosis. My greatest concerns are pneumonia, breathing constriction, and urinary infections.  I do not have idiopathic Parkinson's, but I do have a form of Parkinsonism, and much of the research being done for P.D. will have a benefit and weight heavily on the potential for discoveries that relate to PSP, MSA and CBS syndromes.  I will always identify with my fellow patients who have Parkinson's Disease, and the support groups for Parkinson's are virtually the only in person, brick and mortar groups we can attend anywhere near the Riverside, CA area. As always, thanks for reading! -- Patient-Online