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

DaT Scan Results on the Heels of the Loss of Our Dear Mother

It has been a trying couple of weeks, but the sun shines behind the clouds, and it is breaking through. Losing my mother, Marguerite, is devastating and creates a void no one can fill.  However, her passing also makes crystal clear the beautiful life she lived, her several talents and the way her life lives on through each of us who were her family and were close to her.  I feel her with me more than ever, in my personality, abilities, and zest for life.

While this great loss was impacting our family, Karrie and I were going through another battle.  We have been fighting my disease by seeing an excellent specialist, a Neurologist specializing in Movement Disorders at Loma Linda University Medical Center.  I won't list the physician's name to protect her professional privacy but I would shout it from the rooftops otherwise! A wonderful doctor, indeed!

Over the 5 or 6 visits we have had with her, we have had very thorough conversations and examinations as she gathered clinical information about my 11 year history with a parkinsonian syndrome.  She approached it using scientific methods, which included starting from scratch with our story and her physical tests.  She spent 2 hours with us initially and has had at least three other doctors examine me while in her offices, as well.  She has adjusted my medications and also my Deep Brain Stimulation system generator each time I have seen her over a 5 month period.

Her actions have included giving me a memory medication called Namenda and it has helped with clarity of thought and provided for more peaceful nights of rest.  Also, she has sent me to an Ear Nose and Throat specialist to study my speech delays and swallow/choking issues. He put a scope up and down through my nose to view my vocal chords with a camera.  My breathing is compromised by my vocal cords which tend to close part way as I breath, causing stridor.  I am now getting speech therapy to help with both speech and swallowing, and I am going to pay more careful attention to my breathing now and in the future.

The decision she made to send me for a DaT scan was really key to breaking the log jam, to my eyes.    I had the scan the week after my Mother's services.  It was hard to be in the same facility in which she was last alive the week before, but the importance of this nuclear imaging test was worth this emotional reminder for Karrie and me.  I felt that Mom was present in my heart and mind while we were undergoing this DaT process.

A DaT is a study of the "Dopamine Transporter" to determine if neurons located in the Basal Ganglia responsible for the transport of dopamine have been lost.  I received an injection of Loflupane I 123 and this nuclear substance attaches itself to the remaining neuron cells.  During the scan, a Gama Camera detects this substance and shows a lighted area where the dopamine transport neurons remain intact.  If there is a loss or reduction in the normal shape, that of a semi-colon according to my Movement Disorder Doctor, then this indicates either Parkinson's or an Atypical Parkinsonian disorder.  Generally, the pattern would be lost unevenly on one side in Parkinson's and would show up with more uniformity on both sides in a Parkinson's Plus syndrome. My reference for this information about the DaT process is the following article found at this link: http://www.parkinson.org/find-help/blogs/whats-hot/april-2014 )

I have borrowed an example image to give the reader an idea of what it looks like in the normal versus the abnormal states of the basal ganglia:

Our Doctor studied my results and showed them to Karrie and me.  We were able to see examples which showed the dot of the semi colon without the comma.  The round portion is the Caudit and the tail, or comma, the Putamen.  In my images, there was little visibility of the Putamen.  The images showing the significantly reduced Putamen were very symmetrical.  The beauty of this is that our Doctor found that this scan affirmed (I didn't use the word confirmed for a reason, affirmed to me means "supported?") her clinical findings (observed phenomena), using the these results which were consisted with what she sees trending in my visits.  I do not have Parkinson's Disease.  I have a Parkinson's Plus condition which is most like Corticobasal Syndrome (CBS).   It is somewhat like MSA.

Corticobasal Syndrome is in the family of Frontotemporal Dementia.  There are four subtypes, with one being focused on a movement disorder that has some movement problems that appear similarly to Parkinson's, but also includes additional problems which makes the prognosis worse and the average time leading to death is typically shorter, on average.  Our Doctor continues to work on my case, but sees it as CBS, and within the FTD family.  Either CBS or MSA have to be confirmed through a study of brain tissue.   Until then, the parkinsonisms are diagnosed as a "probable" and confirmed post humorously if the patient and family choose that path.

You will hear me refer to my diagnosis as Corticobasal Syndrome for the foreseeable future.  I will not be referring to my condition as Parkinson's Disease, since my not having typical PD has been the consensus view of several doctors, including our long term 10 year (now retired) Neurologist and up to and including our Movement Disorder Specialist we have been seeing for 5 months.

As I began, I reflected on these challenges arising along with the changes that come from the passing from this life to the next of our Mother.  Mother was supportive and compassionate.  Her beautiful life puts this in perspective and gives me reason to be so thankful for each hour, day, week, month and year.  Like Mom, I will continue to push forward learning and living with all the love for family and those experiences that I can find within the confinement of my disabilities.  What a beautiful life we have been given, and losing my mother gives me even greater reason to give thanks to God for all that we have and enjoy.

Thanks for caring and for reading.  --Patient-Online

My Mother's Passing: a Bit of Her Story

Mom - a Candid Moment with our Granddaughter

Today I would like to share some of the important or interesting details about the life of my mother, Marguerite Ada Moyers, who became Brooks later.  Our mother, Marguerite Ada Brooks, was born in 1932, in Los Angeles, California. Her father was Eugene Moyers, who was born in 1891, a certified public accountant and a World War I wounded US Army veteran. Eugene married our grandmother, Maude Eva Barnhart, after meeting her in a Los Angeles music store, where they both were working at the time. Mother experienced frequent moves with her family around the United States, including Washington D.C. for a period of my mother’s younger years, time spent in Utah during World War II, and many other years in San Diego. Mom had a strong bond with her brothers, Gilbert and Thomas and is survived by her lovely sisters, Elizabeth LeSage and Virginia Beckett (aunts Betty and Ginny!).  

Marguerite grew up enjoying music, particularly. She enjoyed singing and eventually took voice in order to learn arias from various operas. As a girl, she was an avid reader, and loved the public library where she would sign up for summer reading programs.  She was excellent at sewing and school work, developing strong organizational skills. She took piano lessons as a girl, loved playing with friends and was a fan of the old radio drama programs that preceded the availability of television. As a high school student she needed to help the family make ends meet, so she moved in with a family and served as a nanny and tutor for three children.

After graduating from Long Beach Poly High School, Mom worked and started City College. Eventually, she met Ronald Brooks through his sister, Janice. After Ron returned from a four year stint in the Navy during the Korean War, Mom and Dad married in 1951. 

Mother finished college, but did so after raising four children, with the oldest being Teri Ann, born in 1953, the youngest Casey Andrew, born in 1970, and the middle sons Daniel Ryan in 1955 and Matthew Charles, who was born in 1962. 

Mother’s father, Eugene, passed away in 1965 and he was given a 21 gun salute. Her mother, Maude, passed away in 2001 at the age of 97 years. Marguerite, like her brothers and sisters, was devoted to her mother Maude and spent much time with her on weekends in San Diego during the late 1990’s. Maude was a devoted Christian and practiced regular Bible reading and prayer. She wrote insightful letters regularly to all of her family and thus inspired many. 

For over 55 years, Mother remained in the Lakewood, California family home she and Ron had raised their family in.  During the last five years she has resided in Beaumont, buying her dream retirement house in those recent times. Going back to the Lakewood house, the family room was an addition, with a step down and a big, used brick fireplace. The builder of this inviting family room was our step-grandfather, Ralph Flory, whom passed on in 1989, and Marguerite always treasured her relationship with her step-father, Ralph. 

Mom went on to receive her Associate in Arts degree from Long Beach City College her Bachelor’s in Science from California State University, Long Beach, and her Master’s in Science in Counseling also from Long Beach State. She continued on until she studied and did her practicum hours to receive a  credential from the State of California as a School Psychologist. Mother’s 30 plus year career in the public schools included serving as a School Counselor in Long Beach and over 20 years as a Psychologist in the Garden Grove USD. 

Mom was one who showed the way for her children, always encouraging us to pursue educational pathways that would open secure doors and provide a solid foundation under our feet.  Mom did this by guiding us, but most importantly, by her own actions.  We would walk the halls of learning where she had walked before us, literally going to her schools and following through on the path she carved.

Her favorite things were traveling with her sister Betty and staying in hotels together.  They regularly met up with Ginny and Ron, enjoying their visits in Yuma together.  She loved having season tickets for theatre and orchestra, and she had many friends over the years with which she enjoyed these pursuits.  

Mom loved meeting with friends and family over a meal.  She tried to never miss the graduation, wedding or award ceremony for her children, grandchildren and nieces and nephews.  Mom loved her extended family and valued reunions, the last of which we had right after her 80th birthday when many from the Moyers clan attended a large gathering in the Yucaipa Regional Park. 

Mom was active at Lakewood (Grace) First Presbyterian Church as a Deacon and a long time choir member.  She traveled to Europe and Russia with the choir many years ago.  Here lifetime travels included Ireland, the Panama Canal and  other European destinations. 

Over the years she belong to the School Psychologist’s Association and School Counselor’s organization.  After moving to Beaumont, she joined the Republican Women’s association, the Redlands Woman’s League (volunteered in their Thrift Store), was part of the University Women’s group for Redlands University and enjoyed the social life found in activities and outings at Solera community in Beaumont. 

Mom never stopped.  She always had more plans to go  and do and see.  She encouraged every one she knew to do the same and loved her large family of four children, 10 grandchildren, 7 great grandchildren and 1 great-great grandchild. 

Mom was a deeply spiritual person who had a great and abiding faith in Christ.   She was a giving person and loved all in her own family and the extended family of relatives that she was so proud of.  Her sweet smile and eager conversation will be missed always. -- Patient-Online

DAT Scan Procedure in Parkinson's Plus

I am so grateful that we were able to gain approval for a DAT scan that I underwent yesterday. After eleven years, I think we are closing in on the most specific information regarding the degenerative brain disease that has changed my life so drastically.

A DAT scan is a nuclear study that allows images that show the areas of my brain that are being affected and causing the progressive disabilities that I suffer. It is as high tech as is available today.  I had an IV injection with a low degree of radiation that would be viewed as it moves through my brain.

Next week I will return to the Movement Disorder Specialist and learn what the findings of this study conducted at Loma Linda University Hospital indicate.  I will then share here on my blog what I can on that front. Thanks for your interest! -- Patient-Online

Song: Through Your Eyes - World Looks Different with PD Plus

We lost our mother, Marguerite, suddenly, a week ago today.  She was an amazing 84 and still going strong.

If you watch on You Tube, you know you can click the CC (closed caption symbol) in the margin at the bottom of player, and you will be able to read the lyrics I have written in this song.  -- Patient-Online