Notes from the Twilight Zone: I am not alone

More Bad News for Boomers

In “Have You Lost Your Mind?” (p. 32 of this weeks New Yorker magazine), Michael Kinsley explores the possible mental effects of Parkinson’s disease, a condition he was diagnosed with twenty years ago. Kinsley writes that following his diagnosis, after several weeks of quietly freaking out, “it occurred to me to wonder whether it would affect my brain.” Kinsley asked his neurologist. “He answered carefully, ‘Well, after a few years you may lose your edge,’ ” Kinsley writes. Kinsley continues, “My edge is how I make a living. More than that: my edge is my claim on the world. It’s why people are my friends, why they invite me over for dinner, perhaps why they marry me.” In the two decades since Kinsley’s diagnosis—during which his physical symptoms have advanced quite slowly—“there has been a revolution in thinking” about Parkinson’s disease. While Parkinson’s has “always been classified as a ‘movement disorder,’ ” neurologists now believe that deficits in cognition and memory can predate the physical symptoms that lead to diagnosis of the disease. Wondering whether he might be experiencing the mental effects without being aware of it, Kinsley signed up for a cognitive assessment. “My motive was part scientific inquiry, part hypochondria, and part the journalist’s reaction to any interesting development—‘This would make a great piece,’ ” Kinsley writes. His results in the test over all were “not bad, but not great.” He’d been “off the charts” when he took a similar assessment, nearly a decade before. “This time, I did poorly in exactly the categories where someone who’s had Parkinson’s for twenty years would be expected to do poorly,” Kinsley writes.  “Parkinson’s is a degenerative disease, so things are not likely to get better.” But, he writes, they’re really not so bad now. “How bad could a symptom be if it takes a five-hour test to find it?” Please see this link: http://nyr.kr/1hTItVtF

For those who follow my blog, my interest in this article will be obvious.  Many of the comments in this article resonate with the message in my new Window of Opportunity book.  

I have been thinking about why I wrote this book, which I have tried to explain previously.  It certainly is not meant to create anxiety for PWP's, care partners or their families.  The fact is that most of them are already aware of PD-related cognition issues, either because they have read about them or have experienced them, and are, I believe, interested in knowing more.  I hope that the book sheds light on this discussion that it will be interesting/helpful.  Additionally, by sharing how Linda and I have chosen to deal with these problems, it will give others ideas about how they can approach their own challenges and see that it is possible to continue a happy, productive, and fulfilling life.

I was grateful to receive the following quote from Dr. Michael Okun, Professor of Neurology at University of Florida regarding my book:

"This book by Kirk Hall with a forward by Benzi Kluger, M.D. offers a real-world honest and helpful window into the life of a Parkinson's disease patient who is experiencing cognitive challenges.  There are many useful tips, and also many great stories that will provide comfort to both Parkinson's disease patients and caregivers.  This is just terrific and a really important contribution to the literature.   I highly recommend the book."

Clinical Research Forum Announcement

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Learn more about the state of Parkinson’s research today, the different types of trials and how your loved ones can participate. Speak with some of the most active Principal Investigators in Colorado about their research. Ask questions of Research Coordinators about their ongoing trials. Talk to others who have participated in trials about their experiences. Decide to participate. Make a difference.Clinical trials and studies play a critical role in the development of new and better medicines. Yet, enrollment of patients is one of the top challenges clinical researchers face. Slow and/or low enrollment hinders the research process and deters potential funders from investing in research. Many clinical trials fail to recruit a single subject. Only one in 100 people with Parkinson’s takes part in a trial. We can do better. When: May 3, 8:30am-12:300pm Where: Mile Hi Church, 9077 W. Alameda Ave., Lakewood, CO 80226 What:  8:30      Registration • Exhibits 9:00      Welcome                     Cheryl Siefert, MNM, Executive Director, Parkinson Association of the Rockies 9:10      Parkinson’s Research: Where We Are Today                      Rajeev Kumar, MD, Medical Director, Rocky Mountain Movement Disorders Center 9:25      Panel Discussion of Cutting-Edge Research                      Curt Freed, MD, Professor, Division of Pharmacology and Toxicology, University of Colorado Denver                      Benzi Kluger, MD, MS, Assistant Professor, Department of Neurology, University of Colorado Denver                      Rajeev Kumar, MD, Medical Director, Rocky Mountain Movement Disorders Center 10:20      Movement Break                     Meredith Roberts, PT, DPT, Outpatient Rehab Manager, Life Care Center of Aurora 10:40      Rehabilitation and Integrative Medicine Research                     John Dean, MS, CCC-SLP, Parkinson’s Program Coordinator, Life Care Centers                      of America                      Cynthia McRae, PhD, Professor, Morgridge College of Education, University of Denver 11:10      Panel Discussion on Deep Brain Stimulation Research                     Aviva Abosch, MD, PhD, Director of Research and Professor, Departmentof Neurosurgery, University of Colorado Denver                     Monique L. Giroux, MD, Medical Director and CEO, Movement and Neuroperformance Center of Colorado                     Olga Klepitskaya, MD, Assistant Professor, Department of Neurology, University of Colorado Denver 12:15      Research Fair • Exhibits Event is FREE, but registration is required In Collaboratiaon with:                    Special Thanks to:
Location : Mile Hi Church, 9077 W. Alameda Ave., Lakewood, CO 80226 Contact : info@parkinsonrockies.org This email address is being protected from spambots. You need JavaScript enabled to view it. or 303-830-1839

Window of Opportunity book now available

Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia is now available as a book.  Order in book format at http://www.pygmybooks.com/BuyBooks.html (page 2) or http://www.amazon.com/Window-Opportunity-Reality-Parkinsons-Dementia/dp/0984206345/ref=tmm_pap_title_0. Order in ebook format at http://www.amazon.com/WINDOW-OPPORTUNITY-reality-Parkinsons-dementia-ebook/dp/B00JG577PG/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=&qid=.  

A webinar is planned for Wednesday, June 4, 2014 at 2 pm Eastern on Webex.  Registration and access information will be available on the Lewy Body Dementia Association (LBDA) website (www.lbda.org) in May.  The goal of the webinar is to give Lewy body dementia (LBD), Parkinson's patients (PWPs) and their caregivers the opportunity to hear first hand from Alexander Dreier, who has been diagnosed with LBD, and his wife, Olivia, about what is like for them and how they deal with this diagnosis.  My wife, Linda, and I will also participate as representatives of the "PD world" and how we are dealing with my mild cognitive impairment (MCI) diagnosis, as MCI is often a precursor to Lewy body dementia (LBD).  There will be an opportunity to ask questions. 

My book tells in detail of our journey with the cognitive issues that are common with PD, my MCI diagnosis, what I have learned about PD dementia (which most often falls into the LBD category) and plans for the future.  

I had the pleasure of meeting Helen and James Whitworth (Jim was one of the founders of the LBDA), authors of the best seller A Caregivers Guide to Lewy Body Dementia (available on amazon.com) at the recent Keystone PD Conference.  They will be publishing a new book in the near future that sheds additional light on LBD and insights that will be of interest to anyone concerned about LBD, including remarks specifically addressed to PWPs and their caregivers.  They have reviewed my book and made these comments:

"When Jim and I met Kirk Hall at a Parkinson’s conference in Colorado, we were impressed with his obvious intelligence and knowledge. When I read his book, that was confirmed, but most of all, I was impressed with his courage and determination. Like others facing the possibility of dementia, he found himself alone. Even his wife could see only the positives at first. Yet, he motored on, seeking a diagnosis that fit his symptoms. In the meantime, Kirk’s book shows that he did all of the physical things that help to keep dementia at bay—things like exercising, yoga, eating right and decreasing stress. But he did more. He improved his quality of life and made his days worth living. He moved closer to his grandchildren, increased his focus on spirituality and reached out to others, teaching and sharing. And then he started writing, joining that small group of men like Dr. Thomas Graboys, Rick Phelps and Charles Schneider who tell about dementia from the inside out. As caregivers, Jim and I can only write about dementia from the outside in. We join all dementia caregivers in our gratefulness to men like Kirk who give of their very soul as they tell us what it is like to feel dementia encroaching. Thank you, Kirk, for your heartfelt story. We recommend it to not only all PD and LBD caregivers, but to the medical community as well."

Helen & James Whitworth

April is Parkinson's Awareness Month!



Parkinson's Global Community Conference

       

                            

This conference, which was held March 2-4 at the scenic Keystone (CO) Conference Center, was a huge success.  It was the first time that a conference of this magnitude has been held in the Denver area. or anywhere else as far as I know.  It was made possible by communication between organizers of the Parkinson's Symposium being held at the same time and place and Parkinson Association of the Rockies (PAR) board member, Barbara Mendel.

The conference featured internationally know Parkinson's doctors, scientists, and researchers speaking on topics of importance to the Parkinson's community of  people with Parkinson's (PWPs) and care partners in attendance. Those topics included updates on the latest research and medication developments, caring for caregivers, cognition and memory issues, deep brain stimulation therapy, and dealing with the challenges of life with PD. There were also interesting and helpful keynote presentations and panel discussions.  There was a great deal of emphasis on the ongoing need for patient participation in clinical research trials, information for which is easily and readily available online at foxtrialfinder.com.

In the Denver area, we are fortunate to have many well-respected movement disorder neurologists and neurosurgeons, many of whom were speakers. The sessions held by these doctors focused on information aimed at helping the many patients and caregivers in attendance with improving their daily lives.

I appreciated a presentation by Helen and James Whitworth, co-authors of Caregiver's Guide to Lewy Body Dementia.  Jim created the Lewy Body Dementia Association after he lost his first wife to the disease.  Together, they are committed to helping people understand this disease, which is the second most prevalent form of dementia after Alzheimer's.  Since both types of dementia most often associated with Parkinson's are in the dementia with lewy bodies (DLB) category, this is a subject that anyone touched by PD needs to understand, including risk factors that are different from Alzheimer's.

We were also fortunate to have Dave Iverson, renowned producer of Parkinson's features including My Father, My Brother, & Me who is now a contributing editor for the Michael J. Fox Foundation.  Dave's personal experience, extensive knowledge, and engaging style added greatly to the conference.

Kudos to Barbara Mendel, Cheryl Siefert (PAR executive director), and Cheryl's dedicated staff for planning, organizing, and executing a rewarding experience for all who attended.

WINDOW OF OPPORTUNITY UPDATE

One of my earliest posts was written about my experience with Deep Brain Stimulation (DBS) therapy.  Brain surgery is never an easy decision and should not be taken lightly.  I was fortunate that I had almost a year after I was approved for the procedure in early 2010 to "think about it".  During that interim period, something happened that helped me turn a "leap of faith" into a "hop of faith".

During that summer, I learned about a DBS support group in the Denver area.  The purpose of the group was to give prospective DBS patients an opportunity to interact with other patients and caregivers who had already had the procedure.  There was something about input from other people who had faced the same decision that went beyond professional input from doctors.  These people were not shy about sharing the pros and cons as well as how their lives were affected.

A few months after my DBS surgery in 2011, my first PD-related children's book, Carson And His Shaky Paws Grampa, was published.  The book led to unexpected opportunities to speak to PD support groups, first in Denver (where I live) and then in other parts of the U.S.  Very quickly I was pleased to note that fellow People with Parkinson's (PWPs) were clearly listening intently to what I had to say about living with PD and information that I had found to be helpful.  At some of these events I shared the podium with movement disorder doctors.  While the audience clearly valued what they had to say, they seemed to listen to me more intently.  

Now I am in the interesting position of wanting the PD world to know about my new PD book.  It is challenging to try to connect with this audience so that they will be aware of it and understand that the content may be very meaningful to them.  When I am standing in front of them, the connection is palpable, but it is different "from a distance".  If they read the book, they will understand why I wrote it and why completing it became so important to me.  More than anything else, I hope that fellow PWPs, care partners, and the medical/research community will find the book interesting and useful.  If I am really lucky, it will make a difference in people's lives.

When I think back to the response I felt when speaking to support groups, I am encouraged to "push through" the discomfort.  It feels like I am "singing my own praises", which I don't enjoy.

At the same time, like most people, I enjoy and appreciate positive responses.  With that in mind, I am going to share two responses to the book.  The first is written by a PWP friend who Linda and I have gotten to know as a fellow Parkinson Disease Foundation (PDF) Research Advocate (she is on the board).  With her approval, the publisher is using her comments as a synopsis for the book:

"Window of Opportunity" is the story of one person’s journey through the initial signs of cognitive impairment associated with Parkinson’s disease and the uncertainty of a future that includes a significant probability of dementia. Kirk Hall, only 59 at the time he began noticing small signs of mild cognitive impairment, tells his story with directness, candor, sensitivity and humor.  He describes the long and challenging visits to doctors seeking answers to his disturbing symptoms and the confusion caused by conflicting opinions about the nature and progression of his disease. His journal notes allow him to describe in vivid detail his slowly coming to grips with disability and the increasing lifestyle changes required to offset progressive cognitive difficulties. He shares the internal struggle, anxiety and stress that uncertainty causes, not only for himself but for his family as well.

The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia. It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how dealing with the potential for a terminal diagnosis can turn into a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on a similar path.

Diane Cook

The second is actually the foreword written by my doctor and medical adviser for the book, Benzi Kluger.  I was extraordinarily moved by his comments:

The first time I met Kirk Hall was in November of 2008. In retrospect, I think it is fair to say that this meeting shaped both of our lives in ways that neither of us would have predicted at the time. I think it is also fair to say that it began a relationship that has moved far beyond what I learned about in medical school classes on communication as the "doctor-patient relationship."

I was just four months into my grown-up job as an assistant professor of neurology at the University of Colorado following more than ten years of school, residency, and fellowships. Despite all this preparatory work, I was still very much in the midst of figuring out what I was doing with my career. Still, I was not totally without direction. Having done fellowships in behavioral neurology (the neurology of problems with thinking, memory, and behavior, particularly dementia) and movement disorders (the neurology of problems with motor control, including tremor and Parkinson's disease), I was committed to doing work at the crossroads of these two fields. Being done with training meant that it was now up to me to determine what that further work would look like. I had just started doing research on non-motor symptoms in Parkinson's disease. Although this may sound focused, non-motor symptoms refers to any and all symptoms other than shaking, slowness, and stiffness (e.g., thinking and memory problems, hallucinations, depression, anxiety, constipation, pain, fatigue, insomnia, etc.).

Kirk was also at a crossroads in his life. He too was at the beginning of a journey that would involve the meeting of behavioral neurology and movement disorders. And despite the fact that he did not choose the medical conditions that led to our meeting, he too was faced with the dilemma of how he was going to live his life with them. Kirk was referred to me by the movement disorder neurologists who were taking care of his tremor to deal with his non-motor symptoms, which at that time included changes in thinking and memory, fatigue, and depression. Although I'm sure my notes from that visit contained a wealth of medical information, including his physical examination and neuropsychological test results, I don't think those notes (or most medical records, for that matter) captured what was really important in our interaction as people.

To begin with, the notes imply that I (the physician) am the expert and Kirk (the patient) is the beneficiary and subject of my knowledge. I think one of the many values of this book is that it turns this common wisdom on its head. Kirk lives with the symptoms I read and write about. He is an expert on this subject because he is the subject.

I remember that Kirk was anxious, and that his anxiety was centered around the changes he noticed in his thinking and memory. Scared may be an even better word for what he felt, as it implies a normal reaction to something scary rather than an abnormal reaction to something that should be easy to accept. For many people, the prospect of losing one's memory, of someday not recognizing your spouse and children, is more frightening even than death. Kirk was not afraid to be vulnerable and share his fears with me then, and he was equally candid when I invited him to speak as part of a patient roundtable discussion in front of 60 doctors and other health care providers. This vulnerability has been one of his many gifts to me and the Parkinson's community, a gift that was a driving force for this book: to take those parts of Parkinson's that are scariest and talk about them openly.

I remember reassuring him at that time that he did not have dementia and that I expected he would have many good years ahead of him. I think it was during this discussion that he first brought up the idea of writing a few books and that I first encouraged him to do so. I could tell him he had a window of opportunity that he could choose to use, but neither of us could know how long it would last. Kirk didn't just take the opportunity, he ran with it. Since that meeting he has led two Parkinson's support groups; written three books; and become an advocate for Parkinson's research, a blogger, an advocate for patients, and a national speaker. This book is important not just for the messages it contains, but as a message itself: an inspiring example of opportunities seized from a place where many would have given up hope.

Kirk is a deeply spiritual man who values his faith and draws upon it as a source of strength and inspiration. To talk about such things in our secular age seems taboo, particularly in a book on a medical topic. But despite the increasing use of technology in medicine, doctors ultimately take care of people, not diseases. When dealing with serious, progressive, and life-altering illnesses, caring means asking people about their hopes and fears, understanding their beliefs, and helping them reconnect with their sources of strength and meaning. This type of work is not currently well supported in our medical system, as it (of course) takes time, has no insurance billing category, and is not for the weak of heart.

Since my first meeting with Kirk, I have gone on to obtain grant funding to better understand the causes of dementia in Parkinson's disease, with the goal of developing improved treatments, and have started one of the first team-based palliative care clinics for Parkinson's disease in the United States. Kirk has become a local and national leader as a patient advocate. I am proud to write the foreword to this book and hope that Kirk inspires you as much as he has me.

Benzi Kluger, MD, MS

Associate Professor of Neurology and Psychiatry

Director, Movement Disorders Center

University of Colorado, Denver

August 2013

Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia is now available in ebook formats at smashwords.com and most other major online retailers for $5.99.  It is not yet available at amazon.

Pygmy Books is taking preorders at pygmybooks.com for shipment in late March.  The book price is $14.99. 

 

New Book Release: WINDOW OF OPPORTUNITY







  

I am happy to report that the book I have been working on and referred to in previous posts, Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia is now finished and is available in ebook formats at http://www.smashwords.com/books/view/412572.

The print version of this book will be published by Pygmy Books and will be available on their website, if all goes according to plan, some time before April 1, 2014. UPDATE:  PREORDERS WILL BE ACCEPTED STARTING MARCH 4, 2014 AT PYGMYBOOKS.COM FOR DELIVERY BY LATE MARCH.

Here are some comments I have received from the handful of readers who have graciously taken the time to review the book for me:

"Window of Opportunity is the story of one person’s journey through the initial signs of cognitive impairment brought on by Parkinson’s disease and the uncertainty of a future that might include dementia. Kirk Hall, only 58 at the time he began noticing small signs of mild cognitive impairment, tells his story with directness, candor, sensitivity and humor.  He describes the long and seemingly endless visits to doctors seeking answers to his disturbing symptoms and the confusion caused by conflicting opinions about the progression of his disease. His copious notes on his symptoms and mental state allow him to describe in vivid detail his slowly coming to grips with disability and the increasing lifestyle changes required to offset progressive cognitive difficulties.  He shares the internal struggle, anxiety and stress that uncertainty causes, not only for himself but for his family as well.

The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia.  It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how a potentially disabling diagnosis can be a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on the path."
Diane Cook
Leader, LEAP Parkinson's Support Group
People with Parkinson's Advisory Council, Parkinson's Disease Foundation Colorado State Director, Parkinson's Action Network
Senior Patient Advocate, ProjectSpark Foundation

"Your book is an excellent piece of work. I particularly enjoyed reading about your history and your approach to handling the difficult things God has allowed you and your family to face.  The chapter on faith was inspiring and very humbling.I can only imagine how useful this book will be to a large number of folks who are facing similar situations."
Rich Carnahan, Ph.D.
Retired Aerospace Engineer

“I just opened the first chapter about 2 hours ago and couldn’t stop….I just finished it. It is an excellent book!” 
Carol J. Walton
CEO, Parkinson Alliance

 “Just finished reading the manuscript and can truly say what a wonderful book this will be for so many people…PWP, family members, caregivers. It was an easy read, honest, ‘story like’ which, for me, lends itself to being a page-turner. You could truly hear your voice, the passion and desire, to help educate others.”  

Cheryl Fortunato

Daughter of an LBD patient

"Window of Opportunity" is a unique, first-hand account of the "in between time" that comes upon acceptance of a diagnosis and before succumbing to an illness. This thoughtful, unflinching narrative explores the author's journey from his diagnosis of Parkinson's disease in 2008 through his research into the mysterious threat of cognitive dementia in his future.

 When my mother was diagnosed with Lewy body dementia, I searched for a book like ‘Window of Opportunity.’ It is a touchstone for those struggling with a dementia diagnosis and the people that love and care for them.” 

Leigh Ramsey

Daughter who lost her mother to LBD

Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia is now available in ebook formats at smashwords.com ( and most other major online retailers for $5.99.  It is not yet available at amazon.

Pygmy Books is taking preorders at pygmybooks.com for shipment in late March (http://www.pygmybooks.com/BuyBooks.html)-page 2.  The book price is $14.99.

Parkinson's Disease Global Community Conference

     

       

 

 

 

 

 

GLOBAL COMMUNITY CONFERENCE ON PARKINSON'S DISEASE

"BEYOND THE LIMITS”

When: Sunday, March 2 - Tuesday, March 4, 2014 

Where: Keystone Lodge & Conference Center in Keystone, Colorado 

Focus: Parkinson's disease research, care and support systems

CONFERENCE DETAILS: 

• The conference, brought to you by the Parkinson Association of the Rockies, will focus on research, care and support systems through plenary sessions, workshops and panel discussions.

• Highlights will include the Michael J. Fox Foundation Research Roundtable, NASA Astronaut Rich Clifford and invited national and international speakers recognized for their expertise in the PD community, including selected speakers from Keystone Symposia's concurrent scientific meetings on Parkinson's and Alzheimer's Disease. 

WHO SHOULD ATTEND:

• Those serving the Parkinson community

• Individuals living with the disease and their care partners. 

For complete information:

• Go to www.parkinsonrockies.org
• Email KBuchanan@ParkinsonRockies.org 
• Call (303) 830-1839

A Tribute to Howard

Linda and I were at our local recreation center working out this morning.  While I was on the elliptical, I watched a feature on ESPN about a young man named Owen (I think).  He is manager for a 7th grade boys basketball team.  He is 15 and loves basketball.  He was born with Downs Syndrome.

The story was extraordinarily moving.  Owen's dad asked the coach of the team at the beginning of the season if his son could be the team's manager.  The coach agreed to let him try.  Owen worked hard keeping the gym floor clean, putting away the basketballs, and cheering for his team.  He also practiced shooting every chance he got.

There were interviews with Owen's mom, dad, and sister.  When Owen's parents learned that he would be born with this disability that would limit his mental and physical abilities, they were understandably heartbroken.  They feared that their son would not be able to enjoy all the experiences they dreamed of for him.  His sister lived with the constant fear that her brother would be teased and made fun of, which, in fact, happened.  Kids can be cruel.

Everyone on Owen's team liked him.  Towards the end of the season, they came up with a plan that would allow Owen to play in a game!  The coach agreed enthusiastically.  Owen particularly enjoyed practicing 3-point shots, so the plan was to set him up for a chance to shoot from outside the 3-point arc.  The day of the game came and Owen was beaming as he entered the game, in uniform.  His dad was recording the action.  His teammates passed the ball to Owen and he threw up a high-arching 3 point and..........it went in!  Everyone in the gym went wild (maybe not the other team as it was a close game).  If he could do it once, maybe he could do it again!  And he did!  He made 6 points and helped his team win by a narrow margin.  Owen's dad's recording of the game became a hit on the internet and, thanks to a twitter campaign, ended up on Sports Center!  The next game was the last of the season.  Owen played again and scored 4 points as his team won again!

I had tears in my eyes as I watched this program.  It reminded me of my Uncle Howard, who also had Down's Syndrome.  Howard was the younger brother (by quite a few years) of my mom and Uncle Don.  I learned that my grandparents (Nonny & Bapa) were advised to place him in a facility for "retarded children".  He wasn't expected to live to be a teenager.  I can only imagine their anguish when they actually took him to this place, but decided they could not leave him there.  They took him home.  I don't recall too many stories from my mom about growing up with Howard.  It had to be challenging for her and Don.  Kids can be cruel.

Howard was a gentle, loving spirit in the body of a child who was strong as a bear.  He loved baseball and polka music in particular.  He always wanted to dance to the polka music with whoever was available.  I would compare dancing with Howard to dancing with a bear (not that I've ever done that).  It could be awkward and even painful due to his uninhibited enthusiasm and strength, so my sisters and I would try to make ourselves scarce when the polka shows were on TV.  That said, we all knew he never intended to do anything that would bring harm to us.  He never intended to anything that would bring harm to ANYONE!   He was friendly and loving to everyone he met.

He also liked to do jobs, like sweeping the garage for my mom.  He would refer to himself as "sissy's helper".  He worked tirelessly with Bapa at whatever he was doing.  When Bapa was still working for the New York Central railroad as a brakeman, Howard loved to go with him and ride in the caboose.  He was a huge Cleveland Indians fan and could recite historical information about the team with no problem.

After they retired, my grandparents moved to Tucson.  I am sure this was because they thought it would be easier on Bapa's arthritis.  They traveled a lot in those days, and we enjoyed watching their home movies of their trips to Muir Woods, Grand Canyon, and the one where the trees have turned into rocks.  We were all happy when they decided to move back to Ohio and bought a house a short ride from ours. 

If my sisters or I were in any kind of performance at school, Nonny, Bapa, and Howard were always there.  There was nothing they would rather do (interestingly, Linda and I were the same when it came to our kids and now, our grandkids).  I can still recall other kids pointing out Howard in the audience and making fun of him.  Kids can be cruel.  I don't think I had the courage to say that he was my uncle and not to make fun of him.  Maybe I did, I don't remember any more.  If I didn't, I wish I had.

Howard started having "spells" and heart problems as he got older.  My grandparents had moved to a condominium complex close to Uncle Don and not far from my parents.  My sisters and I were in college at Ohio State.  Howard passed away in his 40's, I think.  I would like to think that he knew he was blessed to have such loving, devoted parents.  They gave up a lot for him.  But they got a lot in return, too!  We all did.  I miss you Howard.

Notes From The Twilight Zone: Dementia--A difficult but important subject

The following is an article from EverydayHealth.com:

http://www.everydayhealth.com/columns/my-health-story/early-onset-alzheimers-disease-michaels-story/?xid=aol_eh-news_11_20131028_&aolcat=HLT&icid=maing-grid7%7Chtmlws-main-bb%7Cdl3%7Csec1_lnk3%26pLid%3D399666

 
This is a subject that relates to a very real problem for people with Parkinson's (PWP).  I will explain further after the story.

________________________________________________________

By Michael Ellenbogen as told to Emma Steel, Special to Everyday Health

Imagine, if you will, waking up one morning and going about your daily business: you have had breakfast and are about to leave for work, but you can’t remember where you left your keys. Common enough, you say; we have all done that at some time or other. Your wife hands you your keys and off you go.

Life carries on as normal for a few weeks, then one day, while at work you have to call a colleague, but you have inexplicably forgotten his extension number; an extension number you have called numerous times a day for the past 10 years. You feel silly but put it down to being tired. You work hard and hold a high profile position in a financial institution so it is understandable that you will have memory lapses now and again. As with the key incident, you laugh it off.

Over the next few months things start to get worse. You are forgetting people’s names even though you have worked with them for many years, you are making stupid mistakes at work, you are forgetting to go to meetings, you are finding it really difficult to do the simplest of tasks, you continually forget where you parked the car. Again, you are told by friends and colleagues and doctors that it is due to stress; that you need to slow down, maybe take time off, etc. But you know there is something wrong, you know that it is more than stress.

So you start keeping a record as best you can, and you pester your doctor for answers. One day you get the answer. An answer no one expected.

An answer that will change your life and your family’s life forever.

You have Young Onset Alzheimer’s Disease.

Alzheimer’s is an incurable, progressive loss of brain cells. In the beginning, it targets memory and speech, and as time goes on the symptoms become wider ranging and debilitating and include disorientation, difficulty judging distances, poor vision, poor speech and writing abilities, repetitive behaviour, mood swings, and depression. Then, in the final stages of the disease, it is not just the mind that is affected; the body is rapidly declining also. In the late stages of Alzheimer’s, there will be difficulty swallowing, a needed for assistance when changing position or moving from place to place, increased vulnerability to infection and a complete loss of short-term and long-term memory. Death is slow, painful, undignified, and inevitable.

My name is Michael Ellenbogen and this is my diagnosis.

What People Don’t Know About Alzheimer’s

For the last decade I have campaigned on behalf of myself and all those suffering from this devastating disease. Why do I have to campaign? I do it because over five million Americans have Alzheimer’s and other forms of dementia. What is more shocking is the lack of knowledge out there about this illness.

I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer’s disease. While some may be sympathetic in the moment, there appears to be little follow-through.

People look at me and think there is nothing wrong; I am not in a wheelchair, I have full use of all my limbs, I can see, hear, speak and listen…but not for much longer.

I am dying; day by day, hour by hour my life is ending.

So much of my life has changed with this disease; household chores that were once second-nature, like cutting the grass, have become frustrating and difficult for me to perform. I leave things lying around the house – not to be difficult, but because I have forgotten where they go, and I am also afraid that if they do get put away I will not remember where they were put.

I was once a very sociable person, but now I go to a happy affair only to be tortured by the noise and surrounding conversations because I am overwhelmed by the stimulus of sight and sound. I don’t understand what people are saying; the words run together and they may as well be speaking a foreign language.

I can no longer write or speak like I used to. What you are reading now has been written by a friend of mine who helps me put my words onto paper. My friends have become distant, and even when in their presence they will address my wife. Even when enquiring after me they rarely direct their questions to me. This is heart-breaking for me, the fact that they feel they can no longer talk to me really saddens me.

Grocery shopping with my wife is time-consuming and frustrating as I find it difficult to make decisions and plan ahead for meals. Eating out was something I used to enjoy but now I am unable to read the menu and assimilate the information into a decision. At home my wife has to assemble my meals in a series of individual decisions.

The Loss of My Independence

There was a time when I could follow a map and easily get from point A to B. Now I rely on my wife for navigation. I know that it won’t be long before I can no longer drive and that really upsets me because I love going out for long drives in my car; it is the last vestige of independence I have left.

I used to be smart, I worked hard, and I accomplished a lot. Seeing all my failures today is giving me a new appreciation for the things I was once capable of doing. I was a very different person, but that intelligence still shines through occasionally as I am challenged to invent new coping strategies to respond to these changes.

This disease is costing me money in so many ways because of the problems and issues I create; I have broken gardening tools because I have forgotten how to use them properly.

Personal grooming is a problem as well,  as I can never remember the last time I washed my hair or changed my clothes.

In meetings I will lose track of the subject matter if the information is shared in long sentences. If I am speaking at events or meetings I must have my speech printed in a large font size with clearly marked punctuation.

Mind-Body Disconnection

Sometimes my mind does not communicate with the rest of my body; I had to turn the grate on my fireplace but instead of tentatively feeling if it was hot or not I just picked it up and badly burned my hand.

I can no longer use my video recorder. I had trouble remembering which way to turn off the water in the garage for the hose

I lost my job because I could no longer function in the environment, so now I spend my days advocating for Alzheimer’s. It gives me a reason to get out of bed in the morning, it stimulates what is left of my mind.

My Wife’s Burden

Do you know what the worst part of this is? I have to watch my wife struggling to do the things that I once was capable of doing, and know I cannot do anything thing to help. I see my wife becoming stressed, depressed and overwhelmed, and know it will only continue to get worse.

My wife is on the road to hell; I have not even reached the worst stage. That scares the hell out of me.

I am losing my mind and I can see it happening, but I cannot do anything to change the course. I am slowly becoming a child again, and will soon be a body with no mind.

At what point should I give up? At what point would I give up?

What do I have to look forward to?

Why should I put my wife through any more pain and sadness. Do I really want her to watch me slowly die in front her eyes?

Any chance I had at a good life and a happy retirement has gone; my life is pretty much over. If you were in my shoes would you want to carry on, knowing what is in store for you?

I want to die on my own terms, I want to die with dignity, I want to die while I can still make the decision to die, and that is a very small window because I know in the not too distant future even that choice is going to be taken from me.

The laws we have in place today do not take into account the needs of people suffering from dementia; we need to rethink not only how we regard people with this disease, but also how we look after them. We need to have things in place not only to help those suffering live vital and productive lives, but also provide the means necessary for them to die with dignity and at a time of their choosing. We need to take our heads out of the sand; we can no longer turn a blind, this is a very real problem, this is happening now to millions of people across America.

We need your help!

Michael Ellenbogen is an Alzheimer’s patient advocate and author of From the Corner Office to Alzheimer’s.

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As you can see, the writer doesn't hold anything back in this article.  He is helping the public to understand the challenges associated with Alzheimer's (AZ) including why "death with dignity" becomes so interesting to someone in his position.

In the case of Parkinson's the concerns are very similar for roughly 40% of patients with PD who have a related affliction: Lewy body dementia.  I have mentioned in a previous post that I was working on a book titled Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia. 
I completed it recently (I thought I had completed it in August, but decided there was more to be done) with the help on an independent editor in Colorado Springs named Brooke Graves.  I am happy that I was able to write it and that she was able to help me "smooth out the rough spots".  I hope to have it ready for publication in the near future.  As a preview, here is the Table of Contents:

CONTENTS

Foreword by Dr. Benzi Kluger

Acknowledgments

Introduction

Chapter 1:      Crossroads

Chapter 2:      Life before Parkinson’s

Chapter 3:      The Elephant in the Room

Chapter 4:      Learning Curve

Chapter 5:      What’s Up, Doc?

Chapter 6:      Deep Brain Stimulation

Chapter 7:      Bad News/Good News

Chapter 8:      Parkinson’s and Dementia

Chapter 9:      Stress

Chapter 10:    Living with PD and Cognitive Impairment

Chapter 11:    Choices

Chapter 12:    Impact on Families

Chapter 13:    Palliative Care and Neurology: Striving for Justice

Chapter 14:    Faith

Chapter 15:    Recommendations

Epilogue

Appendix A: Technical Information
Appendix B: The Seven Stages of Dementia
Resources
Recommended Reading
About the Author
Endnotes

There will be more updates on the book in the future.