Michael J Fox Site Post Parkinson's Plus Breakdown

A longtime friend and leader in the Parkinsonism community, Robin Riddle, shared some important news on her email newsletter.   She alerted Parkinson's Plus patients that there was a breakdown of the four main kinds of Atypical Parkinsonism written and posted on the Michael J Fox Foundation for Parkinson's Research website.

Mrs. Riddle, who also writes the Brain Support Network blog, announced this important news through her email list and pointed out that this is the first time such a complete and well defined explanation appears on the MJF website.  This represents for me a change in tone or emphasis in the MJF Parkinson's Foundation scope of interest.  

As one who has from the beginning been diagnosed with Parkinson's Plus, rather than Parkinson's Disease, I have had a hard time relating to the MJF organization, although Michael J Fox has been a great source of leadership and inspiration for me, personally.  The first book I read after realizing my diagnosis was similar to Mr. Fox's was his LUCKY MAN biography.  His honesty and openness about his experience as a front line actor in two very popular TV series and the Back to the Future movie franchise, and his coming forth as a patient diagnosed with P.D., were of great benefit to all who suffer with these degenerative brain diseases.

Robin Riddle CEO and Board of Directors for Brain Support Network

Now, Robin has let us know that there is some quality information posted on the MJF website.  By the way, Robin is the head of the organization known as the Brain Support Network, a group that plays a critical role in research to find answers and eventual cures to these devastating illnesses.   They seek brain donations from patients and their families in order to give this tissue to the Mayo Clinic to be studied, posthumously.  I am thankful for her work and that she and Karrie partnered to arrange for my donation to take place when such a time presents itself.  It is a process which involves some work, some emotional strain and a modicum of expense (a donation determined by the donor and not defined by a fixed amount) to be arranged.  I encourage you to consider doing what we have done because it is a process that will provide answers about the condition you or your loved one suffered from, as well as making a major contribution to the body of work researchers are putting together to find answers and solutions to these diseases.

Thank you, Robin, for being there to share information and leading the way in this important donation process leading to discoveries that will help those who come after us.

I am also grateful to Mr. Fox and the MJF Foundation for Parkinson's Research for making this educational information about Parkinson's Plus a priority on your website.  It means a lot to me and I am sure to others, as well.

Blessings, Patient-Online

The Blues Won't Let Me Go!

This is not a bummer, but rather a good thing.  The blues are a music style/genre that I have grown to love and enjoy since I decided in 2009 to make a goal of growing in my knowledge of and skills in writing, singing and playing the blues.  This includes the guitar and the mandolin, along with the vocal style.

My alternative blog is, My Blue Strat, and I am posting below my newest journal entry on that blog.  Follow this link to learn about my love for the blues and why I find this form of music a positive source of energy and expression.

http://mybluestrat.blogspot.com/2017/05/the-blues-wont-let-me-go.html

Time to Let it Sink in: Coriticobasal Syndrome

I took some time.  All of April to be exact, and then some.  Here it is May and I am thawing out my writing impetus after 5 weeks of writer's block.  After getting a new (November 2016) probable diagnosis of a disorder called Corticobasal Syndrome, a member of the Fronto Temporal Disorder family, I ran out of words to say, or write.

First, of all, I am very grateful to our great doctors-- our primary care doctor at the clinic, the various specialists who treat me for everything from choking/swallowing difficulty to severe eye pain, and up to and including the outstanding Movement Disorder Specialist/Neurologist that is working so hard to  find answers to my rare Parkinsonian disorder.

For years, I wrote on this blog (since 2006 with some breaks) details of my experiences, feelings, faith struggles, spiritual plateaus, and thorough verbal descriptions that defined and categorized all of the various Parkinson's Plus syndromes that I am similar to, if not experiencing.

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. -- Galatians 6:9

Now, after all these years, I am at peace.  I have for years been defined as having Parkinsonism and one of the Parkinson's Plus syndromes, most likely Shy Drager. Shy Drager is known as Multiple System Atrophy and I have the hallmark symptom, low blood pressure upon rising from bed or getting up from a sitting posture.  This causes blacking our, loss of oxygen to the head and can be an hours-long condition where my neck and shoulders ache, my arms and upper extremities get a numbness and lack of feeling, and my strength is very limited, causing great fatigue.  This blood pressure issue gives pause to my neurologist and is the reason why in addition to Coricobasal Syndrome (Alien hand and Eye control/focusing/tracking issues) and Parkinsonism (tremors, stiffness, loss of balance, and many other symptoms), I am considered to possibly still have MSA.

My behavior, emotions, thought changes-- an area so personal to me that I can't discuss yet-- means that I am being looked at for Fronto Temporal issues.  FTD is scary.  I don't know what to think about it.  If I am confusing you, just imagine how confused I am.

All I can say is, I am beginning to want to share about these things.  I respect my physicians and want to give them the space and freedom to consider all the avenues and pursue the best truth that describes the need and leads to the best possible treatments.  My Deep Brain Stimulator is working for me and keeps me walking-- at least enough to use my walker.

Today, Karrie is taking me on a very nice outing to Ikea.  That sounds like a lot of fun.  This will require my wheelchair and mean that I will be dodging nice people all day long. It will be great to be out and part of the world for a time.  Just enough time to let it sink in again-- I may be disabled, but I am not grounded.  Not completely.  I have Coricobasal Syndrome:  a loss of cells in my basal ganglia on both sides enough to show up in my DaT scan results and cause the loss of body control that has put me in a walker and stollen my career.

After all this time, I don't have as much to say.  However, I am beginning to want to share again.  I will give it a try, very soon.  Meanwhile, I've got so much to do. I'm a father, a husband, a grandpa and a guitar player!  Life is beautiful, man! Stay tuned-- Patient-Online

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