Adapting to Changes

Our clinic now has a neurologist whose specialty is movement disorders like Parkinson’s Plus Syndromes.  We have returned due to the opportunity to see this wonderful doctor without needing referrals and approvals. She agreed with my previous MDS that what I have are two Parkinson’s Plus syndromes but not the same two.

You may remember that I was diagnosed with MSA and CBD. What I am now facing as my diagnoses are close “cousins” to these previously diagnosed conditions: Lewy Body Dementia and Progressive Supranuclear Palsy.  Lewy Body Dementia includes movement symptoms as well as autonomic issues, as does MSA.   Progressive Supranuclear Palsy involves falls as well as serious eye control issues. As I look back, I remember my PET scan results indicated findings consistent with Lewy Body Dementia.

So as I return to write after a hiatus lasting months, I am revealing what has been happening and why Karrie and I have been overwhelmed.  I am self conscious about the nature of my diagnosis and what it means.  In the meantime, I am not sure how this fits with an existence that is more and more limited. I choose to live each day to its fullest no matter how limited I am.  Adapting to the changing picture of my diagnosis isn’t for the faint hearted, but it is doable.

I will end by encouraging you to go to the icon on the right and click on my song, I Will Go On, which says how it feels to be in this situation and wanting to find a way to make these adjustments. — Patient-Online

Lost My Domain for We Will Go On but Got it Back!

Dear Blog Readers-- I made an error and allowed my domain name to expire. I am happy to say that I have restored my domain and that my blog is once again up and running. It was only a matter of 9 days, so I think it may have gone unnoticed. There is a bit of a fee (like a "fine"), so that was frustrating.

Thanks for supporting my blog. I will be writing an entry and announcing it soon. I plan to talk a bit more about Corticobasal Syndrome and how it is that I have two rare Parkinson's Plus syndromes at the same time. No, on second thought, I won't be explaining that, exactly, but I will be posing that impossible question, "How is it that I have two degenerative brain syndromes?!" Hey, I am here and I am still singing and picking so we have much for which to be grateful! -- Patient-Online

Kneeling in Reverence is Not Unpatriotic

A dear friend shared a New York Times article with me about thoughtful discourse and the lost art of disagreement.  It is found here:  "The Dying Art of Disagreement".

Though I am not sure what turn of events may have prompted such an article sharing, I do have some thoughts running through my mind that relate to this article about the lost art of disagreeing. 

I am challenged by the fact that upon my agreement with the NFL players taking a knee during the "Star Spangled Banner", that Trump called out after things had grown peaceful ( the S.F. quarterback’s stand took place last year, not currently, and yet the President brought it up), I too am taking a knee in my heart.  I love the American flag, patriotic music and had a lifelong love affair with these vital symbols as a student, teacher and school principal serving as the chief patriotic leader of my public school community. With this in mind, some clarity of symbols and their meaning must be related. 

The cloth of the US Flag is not worth as much to me as the lives of my fellow black Americans,* as a key group that I am standing with because I feel compelled to do so.  As Jesus said, the "Sabbath was made for man, not man for the Sabbath." In other words, "moral practices are instituted for the good of people, rather than people being created to serve rituals and traditions," (my words).  Thus, this patriotic symbol’s moment of honor is taken as an opportunity to point out a greater issue affecting all of humankind, if not all Americans: that of racial, cultural, gender, sexual (preference), differences in ability (disabled-- such as myself), and religious fairness.  

Unfortunately, our President unintentionally calls on me because of his obvious lack of understanding of diversity and fairness, to respond in a meaningful way.  Choosing to kneel during the Star Spangled Banner does not mean that those of us doing so are not supportive of the military effort.  To the contrary, it is in honor of this great service they provide, as our fathers, mothers, brother and sisters before us, did as well.  Military, although arguably the highest form of patriotic expression, isn't by any means the only way to demonstrate love of country.  

I belief it has to be clarified that the flag isn’t solely what our armies fight to protect, in my own humble opinion, it is also the civil rights of all Americans,* and also their right to speak up when they see injustice or hear it, for that matter.  Mr. Trump did not need to yell, “Get the S— O- a B---- off of the field!”  This drew all brave and loving fathers playing in the NFL to take a stand by kneeling. They are showing respect for their country and quietly and respectfully letting their families, fans, and the world know that they are not appreciative of the attitude that the President demonstrated when he brought this up during a post campaign rally in Alabama last Friday.

This points back to some actions of law enforcement that violently targeted black Americans during traffic stops and other public encounters with police officers.  This behavior by officers represents a very small, but important percentage of the police force in these United States, but shouldn’t be ignored.  No one can honestly deny the systemic racism that must continue to be addressed and wrestled with as a serious safety and economic issue in our time.  

As Jesus would point out, it is more important to meet the needs of human beings (civil rights) that to salute a beautiful and emotionally connected symbol that I spent 30 years teaching children to respect. The flag is likened to the Sabbath and the needs of the sick needing healing on the Sabbath are likened to the civil rights of all Americans.  I do still love and hold the flag in a place of great honor, such as displaying it on our doorstep for national holidays.

There are times when symbols are provided as a tool for teaching placed in the right hands in the proper moment. As an illustration, I never ridiculed the very few religiously objecting students for standing in class during the “Pledge of Allegiance” without saluting.  They were doing the honorable thing that they were brought up by their parents to do and in that way, they were honoring the values of our country. The right thing to do was to support and not embarrass these students in this moment, as it would have been right for the President to not have called this player vulgar names or his mother, for that matter.  When the President ridiculed a disabled man for his movements, very similar to my tremors, he dishonored the civil rights of neurological patients and differently abled persons everywhere, including those with Parkinson's Plus, Parkinson's Disease, or another specific brain disorder among many other disabling conditions.

We should honor the people and the values the flag stands for even above the cloth itself. As in another application, Jesus is the Word;  the Tyndall House leather covered Bible is very special, but no one translation or red letter edition in the form of a published book is more important that Christ Himself, the true and living Word of God.  

We can discuss matters such as this by respecting, loving and appreciating each other’s point of view.  There is no need for name calling or for accusing one another of not loving the country, the flag or of dishonoring fellow Americans who serve or served in military commitment.  In the face of a President who is challenging for a good 60% of the citizenry of this country to understand when given his honest admissions of dislike for diverse peoples, whether condemning NFL players demonstrating in a quiet and peaceful manner, or his stated belief that Latino Americans are criminals that need to be kept out or deported, we have to provide for an exchange of ideas and concerns, and both sides need to allow for this. 

Calling one group, “Bigots” or another “Unpatriotic” is also a right, but doing so may cause more harm than good.  I would like to think that we can come together, share our thoughts without name calling or labeling and then gain some understanding and each have an opportunity to grow and change.  This is something I welcome from the top, in our Nation’s leader, the President, and thanks to this article, I will hold myself accountable for, as well.  -- Patient-Online

**Thanks to my wife who shared the idea of the "persons represented by the cloth of the flag" concept with me and the "civil rights being protected by the actions of our military being as important as the flag they fight to preserve," as well.  She has insight and it makes so much sense when she shares ideas with me.  

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

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

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

Grace as the New Year Begins

In a few days, we will enter a brand new calendar year.  There is nothing magic about putting a new 2017 calendar on the wall and there certainly isn't any certainty that we will change as we might desire to do.  However, I do believe these cultural landmarks and measuring sticks do help us to organize the spiritual and emotional sides of our lives by reminding us to consider who we are and if we are true to our purposes as we live each day.

I am reminded that God is the center of all that I do.  When I forget that, I get off course and end up tossed and turned by the churning seas of trouble.  Looking to Him, who is my creator, and He who leads me in the direction I take and how I respond to the good things in my life and the difficulties, as well.

Look back over your life and consider the big picture -- hasn't God been there all the while, opening doors, bringing comfort, guiding and directing you and bolstering your courage when you can't see how to go on?  I can't help but rejoice at the end of this year for the many ways God touches our lives and His graciousness toward me and my loved ones-- family and friends!

I thank God above for our sons, our daughters in law, our granddaughters, our parents-- all of which are living-- and our brothers and sisters in our nuclear families.  So many blessings in our church, our health care, our doctors, our Pastors, our many friends and all of the neighbors and community we are blessed to come in contact with!  God has brought us a new Movement Disorder Specialist, a wonderful Primary Care Doctor and a very dedicated new Neurologist at our clinic.  Our Neurosurgeon did such a great job on my surgery to implant my new DBS device in my chest.  The healing has been so smooth!

I think over my life and the decision I made to respond to His call and the guidance I received in  my early years in Lakewood, CA as a high schooler-Christian from my Pastor, who led our youth group (and me) in the ways of Jesus. He also taught me so many practical things about life-- camping, fishing, tennis, social justice and walking with God in Christ.

Yesterday, we received a call from this very high school Pastor (who was the Associate Minister of our church) whom I haven't seen in 40 years!  He and his wife, who is also my friend, are coming to visit us for coffee next week. We are so looking forward to seeing them. We will have the chance to thank them for the influence their lives had on my life, and indirectly, on those of my children.

God has been good.  He has been faithful. Not everything goes as expected, but He is with us, holding us through it all.

In II Corinthians 7:10, Paul writes:

"Godly sorrow brings repentance that leads to salvation and leaves no regret..."

I know that we suffer but not in proportion to how Christ has suffered on our behalf.  Through it all, we can say, "To God Be the Glory, for the things He has done!  All that I am and ever hope to be: I owe it all to thee."  -- Andre Crouch  

Below is a video of this very song that I recorded in approximately 2010, when my hands and voice weren't as affected by Parkinsonism-Plus.

 

 Happy New Year, my friends! Thanks for your much support and prayers.  -- Dan

Late Robin Williams had Lewy Body Dementia

I soberly read with great interest a story about Robin Williams that explained that his Parkinson's Disease condition was actually a Parkinson's Plus syndrome called Lewy Body Dementia.  Lewy bodies (named for Lewy who originally identified them) are protein clumps that form in the motor center (basal ganglia) in Parkinson's Disease thus destroying cells that control normal movements.  In Lewy Body Dementia these clumps are also found in the cortical brain tissue where thinking, planning and emotions occur.

Robin's condition would include the tradtional P.D. symptoms: slow movements, balance trouble and tremors.  Because his diagnosis was ultimately LBD, he also would have suffered from: hallucinations, delusions, executive function issues, depression and severe mood troubles.  Read more about Mr. Williams' condition here.

What a great talent and such a highly intelligent person.  After he died, I recorded a song in the form of a video to reflect the way Robin's last years, weeks and days may have been like to experience.  --Patient-Online

Successful Implant of Brain Pacemaker

Today I was in the OR at Riverside Community Hospital where my fantastic neurosurgeon successfully removed and replaced the generator/stimulator that works in concert with my two brain implants.  This treatment has been successful and surely has extended my life and provided better mobility for me.  4 years ago, I used a wheelchair much more of the time and had more trouble speaking.

Today, I had  a very smooth surgical process and my esteemed brain surgeon completed the surgery and reset my custom settings for my symptoms.  Sending this electricity into my brain center where motor functions are governed,  blocks bad signals so the good ones can be carried by my nervous system to my body's muscles and organs in order to help improve my quality of life dramatically.  Here is a picture of the surgical site:

Inside this 4 inch incision is a scarred pocket where the previous generator was implanted 4.5 years ago.  This is the day of my replacement surgery.  From this, two cables move up my neck (under skin) and up across my head.  Two implant probes dive down through my brain tissue about 4.5 inches. 

We are home, sore and tired, but very grateful and glad to have this behind us! -- Dan

Ten Years On

After ten years my perspective regarding living with a movement disorder such as MSA has become less subjective and knee-jerk, but rather objectively clear and concrete.  Does that make sense?  There have been so many stages, including plateaus filled with purpose, valleys of despair, and wide plains of empty longing for the way I once was (oh, brother is that flowery or what?).  You are probably among the dozens of people that have so closely followed my journey, so you can likely understand the meaning of my words, though maybe somewhat vague if not rambling.

Today, I see clearly that my life is a gift and that the physical and mental struggles I bring with me through this scramble through my time on earth are just part of the whole picture. The joy of life comes through if it persists through all the loses, changes and realizations that come with learning to accept the disappointments along with life's surprising graces. What a blessed person I am, and each of us can be with this perspective.

I had great talk during a breakfast out with someone in my extended family yesterday and I sensed that they had gained a lot of insight into what I am going through, and their interest had grown.  By this I mean they were wanting to be able to clarify those misunderstood aspects of Multiple System Atrophy.  They expressed how perplexing it is when others do not understanding the difference between the more commonly understood Parkinson's Disease and the complexities and seriousness of MSA (obviously, Parkinson's is not less serious, just different). It was, in this person's mind, as though "they just think of it simply as the common form of Parkinson's Disease."  "What is that again?  The name of the disorder?" they clarified.  I stated "Multiple System Atrophy" as they wrote it down.  I felt so gratified that there had developed such acceptance and a solid supportive interest.  There was a passion that accompanied the request for the right words.

I went home and called Vera James, our MSA patient coordinator who works with us and answers the hotline representing the MSA Coalition.  She will be sending me some great leaflets that give a thorough but brief explanation of the symptoms and things to watch for that define the struggles of this diagnosis.  Write me a comment and/or an email and I will send one to you.  You can always check this link to learn more about MSA and our Coalition. -- Dan

Walking Is Increasingly Hard this Week

Note: Our friend Lori is home after a successful hip replacement surgery.  We pray that her recovery will be smooth and timely.  Our best to you and Pastor Brad!

Multiple System Atrophy is a syndrome which causes such a variety of issues that as a patient you will forget the difficulty of one serious symptom while several others have risen to the fore. I live with balance and walking/gait difficulty always, and have since this came on just over 10 years ago.  Due to blood pressure being low (orthostatic hypotension) makes it hard to rise and begin to stride because of either a grey out moment or weakness in muscles.  Once I going, my balance due to brain changes in the cerebellum contributes to the struggle to walk with much balance, and my pace is very slow due to parkinsonism as I attempt to go get the mail from the mailbox or take the trash to the garage.  Even with a cane or walker, it is a rocky road.

These last several days, it has been worse.  I am stooped over more and moving very slowly, with an exaggerated shuffling gait.  I went in the grocery store with my wife and found the size suggests a wheelchair rather than a walker next time.  I may get my next DBS adjustment and find that it brings improvement in this area.  It is hard to say, but often the electrical stimulation that is continuously flowing to both sides of my brain, when targeted to improve a symptom can actually do something close to that!  Always Hope,  Dan

Moving Forward with MSA/Shy Drager

So much to consider each and every day.  I am having some fairly good success with my Deep Brain Stimulation system.  It is the overall improvement and health DBS enhances that I feel most thankful for.  My wife and I feel that I am getting a slower progression of my brain disease, thus my health is holding out longer than expected-- all because of these brain implants and regulator in my chest.  I was diagnosed with a Parkinsonian-Plus condition, possibly PSP or Shy Drager, 10 years ago next month! Wow! I am still here and still enjoying life.  I find being a grandfather to my two granddaughters to be the greatest thing of all about living on.  Also, enjoying retirement with my best friend and my spouse, who doubles as a great caregiver is a fantastic experience.

I am able to sing and play my mandolins and guitars.  I enjoy playing in the church band and singing with my friend at a nearby nursing home.  Loads to be thankful for!  I am still struggling daily with the usual dysfunctions caused by MSA/Shy Drager, but I can fight through it.  Walking with a cane or walker, putting thickener in my liquids, eating slowly and deliberately to avoid choking, taking my many medications on time (thanks to my spouse!) and watching out for slippery areas or things to trip on to avoid falling are all things I can work with if I keep a good attitude.

I am trying to write this blog to show that I have risen from the ashes of pain and disappointment to give back to all those who share so much with me.  Have a great day.  -- Dan

Four Years Since Deep Brain Stimulation Surgery

It has been four years since I underwent DBS surgery.   Though I have Multiple System Atrophy, I was a good candidate as deemed by my doctors.  It has been successful and I have benefited from it. 

It was quite a challenge to face brain surgery and the possible complications, not to mention the range of outcomes from success to failure that may have resulted from it.  I am glad to say that it was a big success! 

Did it change the fact that I have a neurodegenerative disease that will continue to progress?  No, it did not cure me, but this medical simulator and two implants in my brain, helps me move better and reduces unwanted jerky movements and tremors.  Also, it seems to be lengthening my life.  What more could I ask for? 

-- Dan

Bernice Bowers -- Long Time Friend of CurePSP and Shydrager Support Group

I was deeply saddened to learn yesterday that Mrs. Bernice Bowers of Milford passed away in October 2015.  Somehow this news had slipped by without our knowing in the Shydrager/MSA forum.  Bernice was a long suffering caregiver and spouse of a wonderful man named Ken Bowers, a fire fighter who was treated for a Parkinson's Plus syndrome beginning in 1987, and was eventually diagnosed with Progressive Supranuclear Palsy in 1995. 

Ken was found to actually have had MSA posthumously, made clear by the study of his brain, which was generously donated by Bernice after his death in 2000.  Bernice remained active for over a decade in the Shydrager and PSP online forums.  She participated in the first few years of the Cure PSP monthly online support group facilitated by Gary Rose and Vera James.  I personally had much contact with Bernice online and she provided encouragement and friendship throughout the confusion and disappointment of the early years of this struggle for me.  

I am certain there were many others for whom Bernice did much of the same. Bernice was a positive individual with much faith and gave her time to church and community activities and caring for friends and family.  She developed breast cancer several years ago and it had been treated successfully.  This past year it returned and she passed as a result.  Bernice wrote a poem called, "The Golden Cord" which I published in my book I WILL GO ON, along with much of Kenneth and Bernice Bowers' story of his struggle with Multiple System Atrophy.  See her online obituary here. 

We are thankful for Bernice M. Bowers and her generous support for the patients and caregivers facing MSA, PSP, CBD, DLB and other Parkinson's Plus Syndromes. She was a true friend and advocate, and will be greatly missed.  Our sympathies and prayers are with her family and friends.    -- Dan