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.

_________________________________________________________
 

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.

 

Parkinson's Resource List Update

Here is my latest resource list: 

 

PARKINSON’S / CARE PARTNER RESOURCES

 

1. Michael J. Fox Foundation (www.michaeljfox.org)

2. Parkinson Disease Foundation (http://www.pdf.org/)

3. National Parkinson Foundation (www.parkinson.org)

4. Deep Brain Stimulation Information: (http://www.medtronic.com/patients/parkinsons-disease/therapy/index.htm) and DBS-STN.org (http://www.dbs4pd.org/)

5. Care partner information and resources: (http://www.pdf.org/en/caregiving_fam_issues?gclid=CJaj6ZSpmLYCFYpDMgod3j0ALA)

6. Muhammad Ali Parkinson Center Movement Disorder Clinic (http://www.thebarrow.org/Neurological_Services/Muhammad_Ali_Parkinson_Center/index.htm)

7. Davis Phinney Foundation (www.davisphinneyfoundation.org)

8. Parkinson Association of the Rockies (www.parkinsonrockies.org)

9. European Parkinson’s Disease Association (http://www.epda.eu.com/en/)

10. Parkinson Society Canada (http://www.parkinson.ca/site/c.kgLNIWODKpF/b.5842619/k.C7EB/Welcome/apps/s/custom.asp)

11. Parkinson’s UK (http://www.parkinsons.org.uk/)

12. Parkinson’s Australia (http://www.parkinsons.org.au/)

13. Parkinson’s New Zealand (http://www.parkinsons.org.nz/)

14. Northwest Parkinson’s Foundation (http://www.nwpf.org/)

15. Young-Onset Parkinson’s (http://www.parkinson.org/Parkinson-s-Disease/Young-Onset-Parkinsons)

16. Parkinson’s organizations and support groups in your area: (http://www.pdf.org/en/support_list)

17. Parkinson’s movement disorder specialist referral: (http://www.pdf.org/en/yy_doctor)

"Living in the Moment" reprint

It seems appropriate to reprint a post I wrote during December 2011, which remains one of my most widely read articles, as a Christmas message:

The theme my church is using for the holiday season this year is "Christmas Present: Living In The Moment".  I have been thinking about this and how it applies to my life (which I am sure is what my church would have hoped for with all its' members).


The obvious double entendre here is that we all enjoy giving and receiving Christmas presents.  In this case, we all have the opportunity to both give and receive a wonderful gift  by making a conscious effort to "be present" for our families this Christmas and "live in the moment".  But first, we have to understand what this really means.


Living in the moment involves blocking out concerns, hopes, or fears related to events which have already occurred or that may happen in the future.  We can't change what has already happened, so why not (as Pumba so aptly suggests in The Lion King) "put our behind in the past".  We don't have to buy into the Hakuna Matata philosophy to do this.  It is unlikely that we will have "no worries for the rest of our days".  However, we have the option to not let real or imagined concerns about the future take the joy out of living today.


At the risk of sounding like I am "talking out of both sides of my mouth", for me this doesn't mean not taking steps to mitigate future problems.  In this respect, if we don't spend some time with our eyes on the horizon, we may miss opportunities to change the future in positive ways.  For me, the distinction is not letting these thoughts and activities OWN me.  I am not saying this is easy, but I am convinced that I owe it to my family and myself to make this a priority.  In fact, I will admit that right now I am not very good at it. 


In hindsight, I have not been good at this for a long time.  It is a skill that I (like many of us) think I lost somewhere between the innocence of childhood and the (in many cases) self-imposed challenges of adulthood.  Today, with the uncertainty of a future clouded by Parkinson's, the stakes have become higher.  I know if I spend too much time worrying about what could or might happen as the disease progresses, I run the risk of making my health worse today.


Which brings me back to the "Christmas Present" theme.  What better time could there be to commit to living in the moment?  With the magic of Christmas is in the air, why not focus on Christmas trees, decorating our homes inside and out, gatherings with friends, and memorable moments with family rather than concerns for the future?  I believe that I have the opportunity to make this holiday season, as well as the time that lies beyond, more pleasant and memorable for my family and me.  


This is starting to sound like "A Christmas Carol", and why not?  I find myself too often short-tempered and irritable with those who matter most to me.  I am told that this is a symptom of the disease for many, but I have to believe that I can change (or at least improve) if I put my mind to it and "keep Christmas in my heart".


For me, living in the moment is made much easier when I am focused on my faith.  I would not be writing this if I didn't have a tendency to revert to "self-reliance" and worrying about the future.  However, at the end of the day, I am secure and content in the belief that God will watch over my family and me and help us to deal with whatever life throws at us.   I hope that each of you will enjoy a wonderful holiday season that brings joy, hope, and renewal to you and your families.