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Living with Alzheimer’s: A First-Person Account

Michael Ellenbogen was diagnosed with Alzheimer’s disease at age 39. A former corporate manager, he now dedicates his time and energy to education and eradication of Alzheimer’s disease. This article was written with the assistance of Emma Steel.

first-person-account-of-living-with-alzheimersImagine 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. Like 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 down to stress; that you need to slow down, maybe take time off, etc. But you know there is something wrong and 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 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 the memory and speech, as time goes on the symptoms become wider ranging and debilitating and include disorientation, difficulty judging distances, poor vision, poor speech/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 need for assistance when changing position or moving from place to place, there is 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.

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. And what is more shocking is the lack of knowledge out there about this illness.

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 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 when enquiring after me. This is heartbreaking for me as 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.

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 and 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 as 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 are 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.

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

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.

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!

Visit Michael Ellenbogen’s website, http://michaelellenbogenmovement.com or visit his fundraising website here. His book, “From the Corner Office to Alzheimer’s,” is available on Amazon.

 

 

 

 

 

 

 

 

 

 

 

 

Caregiving Helps Dreams Come True

Sherri Snelling is the owner of Caregiving Club, a website dedicated to supporting caregivers.

Sometimes life doesn’t just offer lemons, it offers lemonade. Little did I know that caregiving for my father would also help me fulfill my lifelong dream.

caregiverclubFor more than a decade I had been involved in advocating for and educating family caregivers in my role as Chairman of the National Alliance for Caregiving and working for one of the world’s largest health and wellness companies on caregiving initiatives. However important these roles were, I longed to pursue my passion to become a writer and to lend my pen to raising awareness for the nation’s 65 million family caregivers.  In 2011, I took a deep breath and left my six-figure corporate job to start my own business, Caregiving Club. I decided Caregiving Club would be dedicated to creating educational content through written articles and online videos, consulting for companies committed to supporting its caregiving workforce, and collaborating with other like-minded companies who support our nation’s largest volunteer health care workforce – the 65 million family caregivers.

Brave New World

Most of my family and friends were skeptical and scared for me. Could I make any money doing this? Would I have to sell my house?  I had always been told I was fearless but I worried was I being foolish? While all around me were people pleading with me to play it safe, one cheerleader emerged: my father. My dad and I had not been close as I was growing up. He was a Formula One race car driver and his passion took him all over the world with little time to focus on raising a family. That job fell to my mother and my wonderful stepfather.  But taking risks was something my dad knew well – after all, to get into a tiny car that goes over 200 miles an hour is the ultimate risk.

Over the years, I had been a back-up caregiver to my mother for my maternal grandparents and I had helped care for my paternal grandmother. But I never played a primary caregiver role until I realized my dad’s health was failing. He was a lifelong smoker, he was a partial amputee from a staph infection stemming from a horrific racing accident, he had diabetes, high blood pressure, he was overweight and overall not the picture of health.  Without saying it, we both knew there was not much time left and this may be our last chance to have the father-daughter relationship we never had.

I’ll never forget his words to me when I told him what I wanted to do which included writing a book on caregiving and developing a caregiving reality pilot TV show. With his charismatic and winning smile he said, “Go for it. You’ll never regret pursuing your dreams but you may regret playing it safe and always wondering, ‘what if.’ There may be sacrifices but your personal victory will be sweet in the end.” Then he grinned and added, “You really are my daughter.”

Supporting Each Other

How right he was. I knew I had to make some tough decisions but all of a sudden everything was coming together to make this leap easier. I had to lease my home to free up cash to start my business. My home was my symbol of all I had accomplished over the years. But, with my dad ill and his offer to come live with him, the decision was almost easy. I knew I would have to spend a lot of time focused on writing my book, producing the TV show and everything else to get my business started but I could do it all from my dad’s home.  I could be there if he needed help in the bathroom, remind him to take his medications, make his meals, help transfer him from bed to wheelchair – all the things I had witnessed and written about that caregivers do. But at the same time, we had wonderful conversations when I needed a writing break and he gave me excellent advice about navigating “tricky curves” in my business dealings. He became the co-pilot to my life’s passion and I think it gave him a boost as he ended the homestretch of his life.

After two years of caregiving, I lost my dad to prostate cancer (the one ailment we did not know he had until the end). But, before he left, he saw my pilot TV program debut on RLTV, he applauded when my book was published, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care and delighted in my tales from the road as I traveled on my book tour.  Most importantly, we had the relationship I always wished we had. In the end, caregiving helped make all my dreams come true.

About Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.  Her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care chronicles celebrity caregiver stories and provides a what to expect when caregiving guide. She writes about caregiving for the PBS NextAvenue.org, Forbes.com, Huffington Post and was named #4 on the Top 10 Alzheimer’s Influencers list by Sharecare, the health and wellness web site founded by Dr. Oz. You can find more information at Caregiving Club.

5 Tips to Engage the Brain

WWC-Cover-2By David J. Barczyk, D.C.

With few exceptions, the human body is a self-healing organism and would function, in most cases, without a hiccup if we were able to give it all the things it needs – nutrition, exercise and spiritual food.  Most of the time, however, life gets in the way.  The good news is that we all have the chance to make right with our physical, emotional and spiritual selves and live in a way that allows our bodies to function better.

To reverse a downward spiral and get life back on track, a person has to make a choice to live differently.  The bottom line is that major lifestyle changes are almost always prompted by a Wellness Wake-up Call that comes in one form or another.  The idea of my new book is that Wellness Wake-up Calls don’t have to be organic moments inspired, perhaps by a major life event or upcoming class reunion.  Wellness Wake-up Calls can be intentional. Based on years of research, both academic and practical, many health issues can be traced back to some form of not living right.  Of course, there are exceptions – and those unfortunate instances are not the ones addressed in Wellness Wake-up Call.

My personal devotion to wellness comes largely from the events of my childhood.  My dad, an electrical engineer for AT&T, lived his young adulthood in the throes of the rat race of the Northeast corridor – commuting an hour-plus each way and focusing most of his energies on making a living.

The stress of his life hit him with a stroke in his early ‘40s.  Eventually, he recovered from the stroke.  But by his mid-40s, he was diagnosed with a brain tumor, which was removed.  He quasi-recovered from the tumor, only to have a degenerative neuropathy of his brain.  His health steadily deteriorated for the next five years, until he passed away.  He was and still is a major motivating factor in my life.

One consequence of living lives of such plenty is the onset of diseases a healthier diet or more exercise could often help prevent.  Specifically, many diseases that adversely affect humankind later in life are diseases of brain (Alzheimer’s, dementia, Parkinson’s, etc).  So, if we can take steps to reduce the chances of these debilitating diseases – and research says we can – the time has come to take serious interest.

The human brain essentially needs two things to survive.  It needs a fuel supply and activation.  The fuel supply is largely oxygen.  Activation comes in many forms.  Think of it in terms of struggle.  Too much time on autopilot can lead to long-term issues.

Here are some suggestions of ways to put your brain in the right struggle and get it off the dangerous autopilot mode:

1.    Meditate.
Meditation has been shown to increase IQ and decrease stress.  Meditate 10 minutes a day.  No excuses.

2.    Listen to music or better yet learn to play music.
You are never to old to learn – and the particular struggle of learning an instrument is perfect for your brain.

3.    Exercise.
Walk. Bike. Swim.  Exercise increases oxygen.  Your brain loves oxygen.

4.    Change your environment.
It may seem counterintuitive, but look for ways to struggle a bit and challenge your brain. Take a different route to work.  If you usually go left, go right.  Do something different.  Change your routine.

5.    Think positive.
Research shows that positive thoughts and having a positive attitude increases your brain’s ability to function.  Negative thoughts actually slow your cognitive ability.

DAVID J. BARCZYK, D.C.
David J. Barczyk, D.C. is the Chief Executive Officer of ALL !N Wellness. He earned his Doctor of Chiropractic Degree in 1994 from Life Chiropractic College in Georgia and has a robust chiropractic practice that includes four locations across Southern Louisiana.

Dr. Barczyk has dedicated his adult life to living well and helping others do the same. His motivation stems from the sickness and early death of his father. His father’s death charged the writing Wellness Wake-up Call, which challenges readers to take ownership of their healthy diet and find the time to exercise four to five days a week.  He and his wife, Dr. Colleen Barczyk, motivate young people to stay fit by coaching a competitive swim team. They reside in Lafayette, Louisiana, and have two daughters who are competitive swimmers.

Dads of Disability: An Early Father’s Day Gift from a Jedi Knight

cover-dietzGary Dietz is author of “Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them).” Gary’s son, Alexander, has an interstitial deletion of the lower arm of chromosome 13.

Dads of children with disabilities are just like Dads with children who are not mentally or physically disabled. We have our good days and bad days, our heroic moments and selfish times, our regrets and our triumphs. Let me tell you about an early Father’s Day gift I got this year.

My fourteen year-old son, Alexander, has attended a specialized residential placement for the past two years due to multiple behavioral, intellectual, and sensory issues rooted in a 13q genetic deletion. Despite this drastic life change, we rock out at dinner every Wednesday night and charm the locals. We have sort of adapted to only seeing each other at home every other weekend. Together, we have done a pretty good job of sharing our home this past year with my significant other of three years and her two younger children.

But challenges arise, and they are not always with Alexander!

It is a three-hour roundtrip drive to pick up Alexander and bring him home for blended family time together. Although  I  look forward to this time together, things can go wrong—keys get locked in the minivan, soccer game schedules change at the last minute, Alexander might need to leave a movie after only 30 minutes—and it leaves me feeling uncharacteristically jealous of Dads with typically developing children. A Dad never really gets completely over the whole “comparing” thing between typically developing children and children with special needs. Despite my son’s excellent behavior, decent communication of his needs in the movie theater, fun on the playground, and patience with the schedule changes, I can feel a bit jealous of the other kids’ ability to just go to their soccer game and actually stay through the end of the movie to have a more typical Saturday than I get to have with Alexander. A daddy micro-meltdown isn’t really allowed. Just when a grown-up is ready for a good tantrum, the wisdom of children shows up and we realize how much fun our weekends together can be. My eight-year old stepson, Avery, stepped up on one challenging Saturday and announced: “It’s time to have some boy time. Girls stay upstairs. The boys are going to have a light saber battle downstairs.”

The force is strong in this one.

The next thing I know, Avery led Alexander and me downstairs, set up some rules, handed out the light sabers and then we started the epic light saber battle. Physical fun! Boyhood playing with toy swords!  Alexander was really doing well, much better than I think Avery expected. But we were all having fun. We were running around like crazy Jedi Knights and swashbuckling with our laser swords.

In those few moments of light-hearted fun I had a rare, brief glimpse of my son in a very typical activity and the “disability” melted away for that time.

A Happy Father’s Day to all the Dads out there—on their swashbuckling days and their meltdown days. We are all united in the love for our children of all abilities.

Visit www.dadsofdisability.com  to read Gary Dietz’s blog and find information on how to purchase his book.

Get Fit with SilverSneakers®

In honor of Older Americans Month, Healthways SilverSneakers® Fitness program share some tips on getting fit.

It’s never, ever too late to improve your health through activity.

In an eight-year study, researchers discovered older adults who had been sedentary and started exercising gained health benefits. That’s right, fitness can begin today!

And that doesn’t mean you have to spend every day at the gym. Being active means moving, increasing your heart rate, and warming up your joints.

Powerful perks

Do you value your independence? Would you like more independence? Are you willing to work a little for it?

Getting active now means a better body and more energy for carrying groceries, opening jars, cleaning laundry, lifting up grandchildren and even preventing falls.

Then there’s the issue of disease. Exercise might even reduce the symptoms of such chronic conditions as arthritis, heart disease and diabetes. Working up a sweat can also lift your mood, lower your stress and stave off depression.

Walking

mature couple outdoorsOne easy way to get started exercising is by taking regular walks.

If you’re interested in improved body weight, bone density, balance and coordination, then walking is perfect for you.

HealthwaysFIT.com, the online home of the SilverSneakers fitness program, offers a free video and printable walking schedule to get you started.

Believe it or not, there is a right way to walk. Start by warming up with a slow walk. Keep your head up and eyes looking forward. Make sure your upper body is relaxed and your back is straight.

Keep a slight bend at the elbow joints, and let your arms move freely. You also want a smooth walking motion, rolling your feet from heel to toe. And when you’re through walking, be sure to cool down and stretch.

The Gym Is Your Friend

Mature man and woman posing with exercising equipmentIf you’re searching for more than walking, look no further than your local fitness center.  The strength training, group classes and swimming pools offered at many fitness centers can keep things interesting and fun while you’re getting fit—and give you a chance to meet new people or connect with old friends who are also there to exercise.

The SilverSneakers program offers access to more than 11,000 fitness centers usually at no cost to SilverSneakers members. With one in five Americans 65 and older eligible, there’s a good chance you have a membership opportunity you didn’t even know about.

You can check your SilverSneakers eligibility online at www.healthwaysfit.com/eligibility or by calling 888-423-4632.

Exercise Anytime, Anywhere

You’ve waited this long to get active, or maybe you just needed a reason to get active again. Don’t waste another minute!

Here are five ways you can exercise today, no matter where you are:Man running on stairs, sports training

  1. Stair climbing: Look for a stairway with a handrail that is free of water, snow or ice. Alternate three minutes of stair climbing with each of these activities: front lunge, side lunge, stair dip and stair push-up.
  2. Dancing: Whether you’re wearing headphones, watching music videos online or jamming to your stereo, shuffle and stomp to the beat for 20 minutes. That’s a workout!
  3. Jumping rope: Skip rope with one minute of rest between each one-minute round of activity. After eight minutes, you’re done!
  4. Short circuit: Cramped for space? Cycle through this sequence of exercises three times, spending one minute on each movement: jog in place, squats, push-ups, jumping jacks, chair dips and crunches. Rest a minute after each exercise.
  5. Cleaning: Twenty minutes of washing windows, washing a car or mowing a lawn counts as a workout. Remember, the point is to increase your heart rate while having fun.