Joe Trela's Speech from the 2013 A Celebration of Hope Dinner

Good Evening -- I am very pleased and blessed to be here tonight to tell you a bit about my Mom, Mary Trela.  Mom and Dad raised nine of us – and as the baby, or Caboose, as my Mom called me – I think I have served my role as Mom’s favorite pretty darn well these last 25 years!  It is, therefore, my honor to tell you about how Mom’s ongoing battle with Alzheimer’s disease has impacted me so that you understand how much I appreciate your support.

Mom was diagnosed my junior year of college in 2007 at the age of 57.  Only 5% of those with Alzheimer’s are diagnosed before 65.  You can imagine then, how alone I felt because no one my age had a parent who was no longer able to speak her mind, cook dinner, or drive to deliver communion to the homebound on Sundays.  

My whole life I could always count on her love, support, and enthusiastic smiles.  But for more than 3 years, when I couldn't bear to even tell my best friends about Mom - I almost felt Mom was at fault for her condition!  Then, I did not understand that Alzheimer’s doesn't play favorites.

I still struggle with some harsh realities of the cruel nature of Alzheimer’s as a 25-year old man:

·         Alzheimer’s melted away my afternoons watching TV and eating ice cream with Mom.

·         Alzheimer’s prevented my Mom from knowing how proud I was to treat Mom and Dad to dinner after my first paycheck.

·         Alzheimer’s has cut in on my Mother-Son dance at my wedding next summer.

·         Alzheimer’s will have robbed my children the chance to know and love her.

I’m fortunate that I came to realize how precious some of these little moments were – though I fear, I, like many affected by this disease – only come to these realizations when it’s too late in the game.

I’m actually looking forward to the day when we eventually meet each other in heaven.  I’ll swing by to pick up some butter scotch ice cream for her.  Then we’ll go on a long walk talking, laughing, and smiling. 

Mom and her buddy – back together again – without the cloud of dementia selfishly stealing the moments this time.

I cannot thank you all tonight enough for your support of the Alzheimer’s Association and the free programs and services they provide to those affected by the disease.  I am confident that the Alzheimer’s Association’s research efforts we support nationally, and right here in Cleveland, WILL ONE DAY bring my vision of heaven down to earth. 

Our efforts together TODAY will allow a 50-something Mom to reclaim her future before Alzheimer’s steals her mind and body much too early. TOGETHER, we can make sure that this Mom can age gracefully – comfortably enjoying the fruits of her labor and love – because she can be there -- smiling, laughing and radiating happiness -- as her own little “Caboose” grows up, start his career, marries his high school sweetheart, and begins the rest of his life – all with Mom along for the ride!

I would like to also take a brief moment to recognize my dad, Jim Trela.  Dad – you and Mom have been married for 42 years – and your love, support, and unselfish caregiving of your ailing wife these last six years is both humbling and remarkable. As a newly engaged man, I am so fortunate that you have set the standard for what ought to come afterwards when a man agrees to love his spouse by saying, “For better or for worse; and in sickness and in health.” While the memories fade – your love for Mom endures. Thank you, Dad. 

In closing -- my Mom, Mary Trela, inspires me to tackle Alzheimer’s disease.  Thank you for joining me, whatever your inspiration might be.

2013 Alzheimer's Disease Facts and Figures

We often hear friends talking about neighbors, parents or grandparents who are growing a little forgetful. But, just as likely, we listen to anecdotes about someone who was as sharp as a tack until the day he or she died.

The truth is that the memory-wracking disease of Alzheimer’s is not a normal part of the aging process. We shouldn't expect a lifetime worth of recollections and family connections to gradually disappear as we age.

Yet, a report issued last month by the Alzheimer’s Association found that one in three seniors in America has Alzheimer’s or another dementia when they die. That doesn't mean a third of deaths are caused by Alzheimer’s, but it most certainly means that those loved ones lost a huge part of what made them who they were before they died.

What’s more, according to 2013 Alzheimer’s Disease Facts & Figures, while deaths caused by other major diseases are declining in America, deaths attributed to Alzheimer’s continue to rise – up 68 percent nationwide from 2000-2010. Alzheimer’s is the only leading cause of death in America without a way to prevent, cure or even slow its progression.

In addition to the memory loss, broken human connections and personality changes faced by families dealing with Alzheimer’s, there are enormous – almost unthinkable – expenses associated with the disease. And not all those costs are borne by the health care system and Medicare or Medicaid. Ohioans provided an estimated $8.2 million in unpaid care to loved ones with Alzheimer’s in 2012, and had to cover an estimated $361 million in additional healthcare costs of their own due to the physical and emotional toll of caregiving.

Many of those who take care of Alzheimer’s patients do so from a distance. 2013 Facts & Figures found that nearly 15 percent of caregivers for people with Alzheimer’s or another dementia live an hour or more away. And their out-of-pocket costs are nearly twice as high as those of local caregivers.

So, if Alzheimer’s isn't a normal part of aging, yet both incidences of the disease and associated financial and personal costs are skyrocketing, what does that mean?

From my perspective – and, I suspect, from the perspective of every one of the 230,000 Ohioans with Alzheimer’s – it means we have to do more to find, and fight, the underlying causes of Alzheimer’s, and to support those dealing with the disease.

We've made some progress in recent years. Congress passed the National Alzheimer’s Project Act, a comprehensive plan for attacking the disease and creating a basis for new resources. Ohio advocates were also successful in getting the Adult Guardianship and Protective Proceedings Jurisdiction Act signed into law. And there is progress every year on promising research.

The Cleveland Area Chapter provides numerous free services and programs for individuals with memory loss, Alzheimer’s disease and related dementias and their caregivers These services include support groups, care consultation, educational programs, a 24-hour Helpline (800-272-3900), the MedicAlert/Safe Return Program and online resources such as ALZConnected™ and ALZNavigator™.

We also help people with the disease, caregivers and healthy volunteers find Alzheimer’s –related clinical trials through our free service, Alzheimer’s Association TrialMatch®.

The Alzheimer’s Association is the largest private funder of Alzheimer’s research in the world, providing significant funding for Alzheimer’s research right here in the Cleveland area.

Virtually every dollar of these funds is donated by generous supporters of the Alzheimer’s Association, here in Northeast Ohio and across the nation. Many of our donors have a personal connection to the disease, and want their children and grandchildren to grow up in a world without Alzheimer’s.   That’s our vision and our goal.

As our chapter holds fundraising events throughout the region, we hope you will join us.  The end of Alzheimer’s starts here.

Nancy Udelson is executive director of the Alzheimer’s Association Cleveland Area Chapter, www.alz.org/cleveland.

TIPS TO NAVIGATE THE HOLIDAY SEASON

Heading home for the holidays; know the 10 Warning Signs of Alzheimer’s

In addition to a new dessert recipe or family vacation photos, bring an important gift home this holiday season and become educated about the warning signs of dementia and Alzheimer’s disease. Visiting with relatives over the holidays may raise questions about the physical and cognitive health of family members. Although some change in cognitive ability can occur with age, serious memory problems are not a part of normal aging. Recognizing the difference between normal aging and more serious problems can help you identify when it may be time for your relative to see a doctor.   

The Alzheimer’s Association has seen a rise in calls to its 24-hour helpline, 800-272-3900, during and after the holiday season when people return home and visit with friends and family whom they may not see as frequently during the year. The Alzheimer’s Association encourages anyone to call their helpline if anyone has a question or doubt about the state of an aging family member or friend. 

Every individual may experience one or more of the 10 Warning Signs in different degrees (see below). If you notice any of them, please see a doctor.

Alzheimer’s Association 10 Warning Signs of Alzheimer’s

1. Memory loss that disrupts daily life.  One of the most common signs of Alzheimer's is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on one’s own. 

What's typical: Sometimes forgetting names or appointments, but remembering them later.

 

2. Challenges in planning or solving problems.  Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.

What's typical: Making occasional errors when balancing a checkbook.

 

3. Difficulty completing familiar tasks at home, at work or at leisure.  People with Alzheimer's often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game. 

What's typical: Occasionally needing help to use the settings on a microwave or to record a television show. 

4. Confusion with time or place:  People with Alzheimer's can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there. 

What's typical: Getting confused about the day of the week but figuring it out later.

5. Trouble understanding visual images and spatial relationships.  For some people, having vision problems is a sign of Alzheimer's. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror. 

What's typical: Vision changes related to cataracts.

6. New problems with words in speaking or writing.  People with Alzheimer's may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a "watch" a "hand-clock"). 

What's typical: Sometimes having trouble finding the right word.

7. Misplacing things and losing the ability to retrace steps.  A person with Alzheimer's disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time. 

What's typical: Misplacing things from time to time, such as a pair of glasses or the remote control.

8. Decreased or poor judgment.  People with Alzheimer's may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean. 

What's typical: Making a bad decision once in a while.

9. Withdrawal from work or social activities.  A person with Alzheimer's may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced. 

What's typical: Sometimes feeling weary of work, family and social obligations.

10. Changes in mood and personality.  The mood and personalities of people with Alzheimer's can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone. 

What's typical: Developing very specific ways of doing things and becoming irritable when a routine is disrupted.

Early diagnosis of Alzheimer’s disease or other dementias is an important step in getting appropriate treatment, care and support services, following are additional benefits to receiving a diagnosis as early as possible:

Benefits of an early diagnosis of Alzheimer’s disease 

• Benefit from treatments that may improve symptoms and help maintain a level of independence longer

• Have more time to plan for the future

• Participate in decisions about their care, transportation, living options, financial and legal matters

• Develop a relationship with doctors and care partners

• Benefit from care and support services, making it easier for them and their family to manage the disease

Anyone with questions about Alzheimer’s disease and/or seeking information should contact the Alzheimer’s Association’s 24/7 toll-free helpline at 800-272-3900.  Experts are available to take calls from individuals concerned with their own cognitive health as well as from family members and friends who may be concerned about a loved ones and seeking resources.

Alzheimer’s Association

The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer's care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. Visit alz.org or call 800-272-3900.

Why I Walk... Have an Audrey’s Army moment

by Noel Joyce, West Side Walk Chair

Audrey is my friend.  We’ve laughed together in our bookclub meetings for years.  She’s smart, beautiful, laughs easily, and is one of the kindest, most caring people you’ll ever know.

Last year, after struggling to remember her students’ names, Audrey, an experienced and accomplished teacher, realized something was wrong.  After medical evaluations she was diagnosed with early-onset FTD (fronto-temporal dementia).

Although Audrey is still the same smart, beautiful and compassionate friend, wife and mother, the diagnosis has changed her life.  In her mid-50s, she retired early from teaching.  She and her husband have accelerated many of their life plans: traveling to Hawaii, the shores of Myrtle Beach, as well as other lovely places, with and without their children...all in anticipation of the journey ahead of them as her FTD progresses.

Shortly after her diagnosis, but before many people other than close family and friends were aware, I was recruiting friends to join my team for the Walk to End Alzheimer’s.  I hoped to have every member of our bookclub walk with us or donate to our team.  However, I worried that Audrey might not want the attention.  So I tentatively asked her permission...

“Would you mind if I recruited walkers to support and honor you?  Would you like to be on my team...or I can help you set up your own team?”  I asked Audrey anxiously one night. 

Her eyes lit up as she said “Oh my gosh, this is how they can help us! Everyone has been asking what they can do, and this would be a way for them to help!”

With that enthusiastic response, I got the go-ahead to recruit our bookclub and other friends for my team, and Audrey and her family decided to launch “Audrey’s Army,” their own Walk team of family and friends!

On Walk Day last September, Audrey’s Army arrived in full—daughter Laura, who coordinated much of the team from University of Akron where she is a student, son Jason, from Dayton, sisters from out-of-state, friends and family from near and far—all who will support them in their difficult journey to come.  They walked together behind a giant banner proclaiming “Audrey’s Army MARCHING to End Alzheimer’s!”

I still get goose bumps thinking about my friend’s “Army” of love and support that day.

So why should YOU walk?
Of course...walk to raise funds and awareness for the Alzheimer’s Association as they take the lead in fighting this disease.  But if you have been touched by Alzheimer’s—if you know someone, love someone, care for someone, or have lost someone with Alzheimer’s—walk to have your own “Audrey’s Army” moment! 

Gather friends and family and spend a morning walking, lifting each other up, and fighting the battle together, in great fun and with great hope, for a future without Alzheimer’s

THE END BEGINS WITH YOU

ALZHEIMER’S ASSOCIATION WALK TO END ALZHEIMER’S^TM 2012

The Alzheimer’s Association’s Walk to End Alzheimer’s is a united movement to reclaim the future for millions. This year, The Cleveland Area Chapter is pleased to present two walk events to serve even more individuals in northeast Ohio. Walks will be held in downtown Cleveland and on the west side in Avon.

Walk to End Alzheimer’s will take place on Saturday, September 22 in Avon at the All Pro Freight Stadium and Sunday, Oct. 7 at Tower City in Cleveland. Registration for both walks begins at 8:30 a.m., opening ceremonies begin at 9:30 and the Walks take off at 10:00 a.m. Both walks are three miles long with an alternate one-mile shortcut.  More than 2,500 people from the greater Cleveland area are expected at this year’s events to raise awareness and funds to fight Alzheimer’s disease.

At the downtown event, kids will enjoy meeting the Cleveland Cavaliers’ Moondog, Flower the Clown and the St. Ignatius Jugglers. Other activities at both walks include a photo booth, face painting, crafts and more!  Walkers will also have the opportunity to write a message in honor or memory of a loved one on their own Promise Garden Flower. Walkers will carry the keepsake flowers with them on the route, creating a moving visual to recognize loved ones. 

The event provides an opportunity for the community to learn more about Alzheimer's disease, advocacy opportunities, clinical trial enrollment, and support programs and services of the Alzheimer’s Association.  Each walker will also join in a meaningful tribute ceremony to honor those affected by Alzheimer's disease and kick off the walk.

The Need
Alzheimer’s is the largest underfunded public health threat facing the nation at this time. Alzheimer’s is now the 6^th leading cause of death in America. Among the top 10 causes of death, Alzheimer’s is the only disease with no treatment, cure or way to slow down its progression. 

“As we see the death rates fall for other major health threats such as heart disease, cancer and stroke, there is a correlation with the amount of private and federal funding that has backed the research efforts helping to eradicate those diseases,” said Nancy Udelson, executive director of the Alzheimer’s Association, Cleveland Area Chapter.  “We hope to raise funding so that we can see that same trend happen with Alzheimer’s.” 

The Walk to End Alzheimer’s is the Association’s largest effort to raise public awareness and encourage support for Alzheimer’s research to stop this epidemic.  Funds from the event will go to support research grants as well as the many free services that the Alzheimer’s Association provides to individuals with the disease and their caregivers.

The end of Alzheimer’s disease starts here.  Start or join a team today at alz.org/cleveland or call 216.231.1466.

The Cleveland Brown & Orange will soon turn Blonde & Brunette

Football in Cleveland to Get a Whole New Look for an Important Cause

PUBLIC INVITED TO THE BIG GAME!

June 16 at 2:00 p.m. at Cleveland State University’s Krenzler Field

This football town is about to change its colors…at least for one day.  Blondes vs. Brunettes, a flag football game for women, is coming to Cleveland Saturday, June 16 to support the Alzheimer’s Association Cleveland Area Chapter.  The public is invited to help in the fight against Alzheimer’s disease by coming out to cheer on their favorite team – blonde or brunette!

This fundraising event has been highly successful in other major cities such as Washington DC, Chicago and New York, raising more than $1.5 million for the Alzheimer’s Association nationally. A dedicated group of up and coming young professionals is now bringing the fun to Cleveland!

Hosted by Cleveland State University on Krenzler Field June 16, the big game will feature two teams, divided to reflect the age-old rivalry between Blondes and Brunettes.  Red heads and everyone in between are free agents and get to choose their team.  While the player’s roster is ladies only, men are also involved in the coaching and cheering department. 

How to get Tickets

·         Your $20 donation to the Alzheimer’s Association will get you in to the game. 

·         Donate online at www.bvbcle.org  (or call 216.231.1466)

·         Following your donation, your name will be on the guest list for the big game!

Dear Editor,

I am writing in response to the New York Times article “New Drug Trial Seeks to Stop Alzheimer’s Before it Starts”.  This disease that causes a degenerative effect on the brain distresses many people globally.  Could you imagine the looks in your loved ones eyes when they discuss what will happen to you when the Alzheimer’s kicks in?  Can you imagine being told you could no longer drive your car, a privilege that you worked hard to obtain so many years ago?  Unfortunately, there are 5.4 million people that live with this disease, and many more that the possibility haunts them due to genetics. 
I personally have experienced this when my Grandpa was diagnosed with Alzheimer’s when I was fifteen years old.  What could this mean? Would Grandpa not remember me?  Would his awesome personality change? Would Grandma be okay with this?  To a fifteen year old, these are scary thoughts that are pushed to the back of my brain.  However, when Grandpa’s mind started to drift when I was a junior at John Carroll University and he had a near-death experience, the reality became quite clear.  My time with him was limited. 
To a 76 year old this diagnosis means fear.  Will I remember my love for the simple things in life?  Watching my grandkids swing in my hammock in my South Euclid backyard, listening to the poems my wife has written her whole life, taking walks around the Belvoir block to Mayfield, Green Roads and back, or laughing with my kids, siblings, nieces, and nephews about the good ‘ole days. 
Now, 25 years old, and without one of my “best friends” as Grandma wrote a poem entitled so, I decided it is time to take a stance.  An old professor suggested I get involved with the Alzheimer’s Association, an organization with a mission “to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support all affected; and to reduce the risk of dementia through the promotion of brain health.”  After some emails, I discovered BvB Cleveland sponsored by the Alzheimer’s Association, or the “blondes vs. brunettes” powder-puff football game designed to raise money to help fight this disease and find a cure.  It already has raised $1.5 million for the cause nationally.  The event will occur on June 16 and is promised to be entertaining and exciting for all ages.
My family was lucky enough to have Grandpa Sonny around until he was 86 years old.  My Uncle and I both wrote speeches to read at his wake, which I would like to share a few excerpts from my uncle’s first: 
“During the Depression in 1926 in the small town of Holy Cross, Kentucky my Dad was born.  His childhood nickname that followed him through life was “Sonny.”  He was the 2nd oldest of 6 kids born.  The family lived on a farm with no plumbing, no electricity, and only a gas stove to warm their home.  Jobs were scarce in Kentucky, so their father decided to move to Collinwood, OH for a better life.
In 1944, Sonny was drafted to serve his country in World War 2.  When he returned home in 1947, he met the 15 year old who would eventually become his wife close to 60 years.  In 1952, my mother’s dream came true and they did indeed marry.  They moved onto her father’s street in Cleveland. 
In 1953 he landed a job with the Shaker Rapid.  He worked as a motorman operator and soon recruited his brothers Bot and Tommy to work by his side.  Eventually, Tommy left the rapid for a career in computers and moved to Georgia.  His brother, Bot, worked by his side close to 27 years, and in 2005 Bot passed away.  When asked about how he felt about his passing, Sonny replied, “I lost my best friend.”
During his work years and while helping raise his three children, Sonny made time for everyone.  his rapid buddies became a second family to Sonny, and he often had them over for “Sonny’s Spaghetti” dinners.  He’d also have them over to make homemade sauerkraut.  He worked split shifts so that afforded him more time to spend with his own children.  He would take his beloved nephew and nieces to the Metroparks and sled riding.  In 1983 Sonny retired from the RTA Rapid after 30 years of devoted service. In his retirement he enjoyed to the fullest his six grandchildren.  He was also able to spend more quality time with his sisters, otherwise known as the “talking heads,” their husbands, and his brother Bot and his wife.”
My childhood on Rushton Road with Grandpa and Grandma is one that will be cherished always.  I would like to share an excerpt of my speech during Grandpa’s later years when the Alzheimer’s kicked in.
“As I grew up, Grandpa grew older, and all of a sudden I was taking care of him, not because I was told to but because I wanted to.  When I transferred to JCU after my party days ‘were over,’ it was Rushton Road that gave me a sense of stability, and a sense of this is who I am.  I would clean for my grandparents.  Let’s face it I cleaned for Grandma; Grandpa just sat in his tan recliner loving his retired life, drinking his black coffee out of his amish mug. 
I would drive them to lunch, which at first Grandpa didn’t love.  The guy wanted to be the rock for his family, but I like to think Grandpa let me drive because he was proud of me and loved me, and wanted to see me grow up.  As he grew older it was the simple things that made him happy: his walks through South Euclid with that infamous hat I would always make fun of him for, sitting in his recliner looking out the front window for any little activity on Rushton Road, feeding his stray cat pal Boris and accidentally letting him in the house one time, his red Christmas vest at the family Christmas party, and his role as (one of) the best Grandpa’s in the world. 
Years passed and I held on to those childhood memories as I went through all my growing pains.  I watched as the proud granddaughter as Grandpa pushed the five younger grandkids in the wheelbarrow, swung them on the hammock or in his hand-made swing, and clapped and laughed with the boys as they danced around. I watched smiling, because I never wanted to let go of the memories that I had with him.  Grandpa reached the end of a life that I can only dream of having – an ever-loving and compassionate wife, three wonderful children who found three loving spouses that all have the family values that were passed down to them, and six grandchildren who will forever tell the memories and stories that have been told throughout the years. 
My last days with Grandpa were spent at the nursing home with me holding his hands, helping him drink his water, and telling him everything is going to be alright. It was my way of expressing the gratitude I have for my childhood memories with him and my amazing mom that he raised.  As I say good bye to Grandpa, in a way I say goodbye to my childhood, and I like to think that the peace I have in letting go of it to move toward my future, is the peace Grandpa feels as he joins God in Heaven.”
In my fondest memories with Grandpa, I am dancing with him at his last birthday we recently celebrated and looking at the joy in my family’s eyes that he was able to take a trip out of the nursing home.  I am writing to create awareness about the disease, and to help find a cure.  As such, please help me in achieving my goal of raising $250 for the BvB Cleveland event!