Barb’s Buzz – My 2014 Advocacy Day Experience

 I especially enjoyed Wisconsin Advocacy Day on March 11th because I shared it with my husband Dan this year.  Several of us who are living with early-stage Alzheimer’s attended the event with our spouses.  Nearly 100 people attended.   There is always strength in numbers.

And as the Baby Boomers age and a large number of them are living with Alzheimer’s disease, we need to focus on programs for those living with Alzheimer’s and their spouses.  This includes monthly support meetings, adult day programs, respite care, research for medicines, support groups, social groups and the list goes on.

After a morning filled with advocacy training, followed by a buffet lunch, we broke up into small groups and stormed the Capitol!  Dan and I went with MaryAnn Vance, Lou Brunner and Lewis Butler to meet with State Senator Paul Farrow.  Our exchange with him was very lively!  He did comment that he would support the “Silver Alert”, a program similar to the Amber Alert, for at risk elderly who have gone missing.  We also asked him to give a serious look at Family Care expansion, and the new plans for re-designing the Wisconsin Dementia Care System.

Our next meeting was with an aide to Assemblyman Chris  Kapanga where we highlighted the same issues.  It was a very tiring, important day.   I believe we left a very good impression because our presentations were heart-felt and emotional in a very good way.

~Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease. ~

Alzheimer's advocates storm the Wisconsin State Capitol on March 11, 2014

Alzheimer’s advocates storm the Wisconsin State Capitol on March 11, 2014

Barb’s Buzz – Stories that Lead to Hope for a Cure

My husband, Dan and I attended the Mardi Gras Gala on March 4th at the Milwaukee Art Museum. It was an elegant night on the town for sure.  But our real hope and purpose in attending was to raise funds for programs and research, which will get us closer to finding a cure for Alzheimer’s disease.  I was the keynote speaker at last year’s Gala. It was my turn to share my personal story about how Alzheimer’s disease has impacted myself and my family.  My plea for funding reached the people in the crowd.  The applause –  I will never forget.  And the funds kept coming in, long after the event had ended.

I looked forward to hearing this year’s keynote speaker, Molly Megal, an eleven year old girl who lost her 52 year old father to the disease.  And I wasn’t disappointed. Molly did a fabulous job sharing her story and the applause was like thunder.  And the funds poured in.  Funds raised to support programs for caregivers and research.

We need more examples of people who will share their stories and raise money for the cause.  I have a close friend who sets a good example. Her father passed away with Alzheimer’s disease. She donates funds once a month to the cause in memory of her beloved father who lived and died with Alzheimer’s.

I’m looking forward to attending Advocacy Day at the Capitol in Madison on March 11.  There we will meet with government officials to share our stories, and present our case for increased funds, and heightened awareness.

I am one who counts my blessings each day.  I am blessed to have an excellent Doctor, a wonderful support group at the Alzheimer’s Association, and my patient and loving husband, family and friends. I am also blessed that you allow me to share my story with you through this blog.

The world is shaped by two things — stories told and the memories they leave behind.”― Vera Nazarian

Barbara Cheek Johnson, and her husband Dan

Barbara Cheek Johnson, and her husband Dan

Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s.

Barb’s Buzz – We Need You to Advocate on March 11

Wisconsin Advocacy  Day – 2014. It’s scheduled for  9:30 a.m. on Tuesday, March 11 at our state Capitol in Madison.

I will always remember this date. It is my Mother’s birthday.  Mom lived and passed away with Alzheimer’s disease.   I will keep Mom and Grandma in my thoughts on Advocacy Day.

Aunt Anita, Mom’s sister and my Godmother, is living with Alzheimer’s disease at Luther Manor in Milwaukee. We visited her recently before her 90th birthday. She looked beautiful in a lovely dress.  She sat upright, posture perfect and looked at us without speaking.  I was hoping that she would recognize us after hearing our voices.

I showed Aunt Anita various photographs I had taken and described each one. Before we departed, with tears in my eyes, I gave her a hug and said goodbye.  She smiled. That smile was her gift to me.  “God,” I said, “Thank you. I think she remembered us.”

I was angry when we left the nursing home. Don’t get me wrong – it’s a beautiful home and the care is good. The staff is attentive and kind. But it was the disease that had made me irate. “Why haven’t we come close to some answers to find a cure,” I spouted.

I am so sad, and angry and feeling desperate.  We need to let our voices be heard. Louder! Louder!  We need to band together to raise funds for research to unfold this mystery that is slowly taking the lives and dignity away from people – many people.

That’s the importance of Wisconsin Advocacy Day.  It’s a chance to let our voices be heard. It’s an opportunity to band together as a group to make certain that our law makers hear our message and what we are asking for.  As more people in Wisconsin and our nation are touched by Alzheimer’s and as time marches on and the numbers of us grow, we need funding, education, awareness, support, and care for everyone impacted.

Please help us find some answers.  Join us on March 11 for Wisconsin Advocacy Day. For more information go to our website:  http://act.alz.org/site/PageNavigator/WI_SW_action_center.html

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~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease~

Barb’s Buzz – Do Something Meaningful in 2014

 2013 came to an enjoyable close.  Our Early-Stage Alzheimer’s support group gathered together after Christmas at the Country Springs Hotel in Waukesha for dinner followed by a drive through their magnificent Holiday Lights display. My husband, Dan, and I were thrilled that our son and his family were able to join us for this special dinner. It was a great opportunity for them to finally meet our Early-Stage friends before they headed back home to Chicago.

Once again our Group shared their holiday tales, hugged, laughed and enjoyed each others company.  What a blessing that we all met each other – thanks to the monthly meetings held at the Alzheimer’s Association.   I cannot imagine how lost my husband and I would be without the comfort and sharing from the wonderful friends that we have made in the Early- Stage Group.

Yes.  There is strength in numbers. And the Group continues to grow as more people are diagnosed with Alzheimer’s disease.  And with the growth in numbers comes the demand for additional services, more funding for research and increased awareness.

Do something meaningful in 2014. Support the Alzheimer’s Association so the programs for individuals and families impacted by Alzheimer’s may continue.   If you have the disease, offer to become involved in a clinical trial at the Alzheimer’s Disease Research Center at the University of Wisconsin.

 2014 brings new challenges and renewed hope.  Let’s find a cure.

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~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease ~

 

Barb’s Buzz: Let’s Hope for Hope in 2014

Thanksgiving is behind us.  Christmas, and other festive religious holidays lie ahead of us.   Followed by a new year.

It will be time to make resolutions. It will be time to hope for discovering new information that will lead to finding a cure for those like myself,  who are living with Alzheimer’s disease.

Hoping is a positive way to cope while living with the disease.  But we must do more than hope. We must help raise funds and awareness so that the Alzheimer’s Association can continue to provide services like our monthly early-stage support group meetings, to counsel those of us, who like myself  are living each day with the disease, and to encourage us and our families to make friends and to bond with each other. These monthly social meetings give both my husband and me advice, support and friendships.

This December, take time to give back. Volunteer to be tested for research.   And look forward to a new year.  For those of us currently in the early-stage support group, we will look forward to the opportunity of welcoming and supporting newcomers to the program, and a chance to introduce them to the Memory Café at Panera Bread in Brookfield.

And thank you to Wendy Betley, our program facilitator, who advises, educates, listens to us, laughs with us, and also provides snacks and refreshments for our monthly meetings.

Enjoy the upcoming holidays with family and friends.

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~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease ~

 

Be Thankful for Caregivers

November is National Alzheimer’s Disease Awareness Month and Family Caregivers Month.  It’s a perfect time to salute and thank the people in our lives who are helping to make our lives better.  I am in the early-stages of Alzheimer’s and feel right now that my needs are minimal.  I am thankful for that.

My husband had a business trip to Anaheim, California last week. He took me along and I was able to enjoy the trip with him. I brought a good novel with me, sat by the hotel pool, swam, and also enjoyed the safety of the lovely hotel room with a view. He made sure that he took me to have a bite for breakfast and checked on me during his breaks.

After the conference was over, we had a ball in Disneyland before coming back home. We picked up our car from our son’s home in Chicago, drove home to the Milwaukee area and drove back to Chicago soon after for our grandson’s second birthday party. It was a fun kiddie party and Halloween costume parade in Chicago’s Roscoe Village.

Activities like these keep me engaged, and smiling even while living with Alzheimer’s disease. I also have a nice group of friends that give me rides to my Bible study.  Other friends pick me up and take me to lunch.  I recently admitted to my Bible study group that I do not remember the passages I have read, but still enjoy their company and discussions.

I watch a Soap Opera “Days of Our Lives” every day at 1 p.m. I have been a fan since I was 16 years old. And I do remember all of the details, including character’s name, and I could tell you what’s happening.

But most of all, I really want to remember to thank my caregivers for their efforts. With Alzheimer’s disease, we need all of the loving care and attention we can get. My advice is to continue what you enjoy as long as you can.  And appreciate your caring friends and family.   They are your loving Caregivers. Give them a smile and a thank you. Tell them you appreciate and love them for their patience and acts of kindness. Yes, November is a time to be Thankful.

Barbara Cheek Johnson, and her husband Dan

Barbara Cheek Johnson, and her husband Dan

Barb’s Buzz – Walking with a Purpose

Purpose is probably one of a walker’s best companions. When walking in this year’s “Walk to End Alzheimer’s” at Mount Mary University in Milwaukee, my purpose was talking to me.

Because Alzheimer’s disease lives inside of me, I have a real need to walk to raise funds and awareness to find some answers. Find a cure. I was also the key note speaker, the one setting an example of what people who have the disease can do. Purpose was telling me to write a good speech from the heart, to reach those afflicted by the disease, their friends, family, and support group.

My support group was at the Walk with me including my loving husband Dan, my son Michael, his wife Kelly, their sons – my grandsons, Ian, age 4 and his brother, Kipton, almost 2, our daughter, Julie, with a baby that is due to be born in December, and my son-in-law Joe.  Also by my side was my life-long friend from High School, Lynne Zacharias, who drove all the way from Iowa to walk with me at her Alma mater, Mount Mary University.

I’ve learned a few things from my journey that I’d like to share. Do not shut down and feel sorry for yourselves.  If you are faced with any adversity – losing a job, a friend, a spouse, a child.   Take time be sad or mad. Take time to cry, mourn, stomp your feet, slam a door. Whatever makes you let off the steam.  Take time to recover.

And then get strong and battle.

For me it was the diagnosis of having Alzheimer’s disease.  Because of it, I was given something positive. That is the friendships I have made in my Alzheimer’s support group, the loving, caring responses of my family and close friends and more time in prayer talking to God.  These are the gifts.

And because of this I will continue to hug the friends in my group. Call them to see how they are doing. Share feelings, laugh and cry with them.  I will appreciate the strength of my husband, the laughter, tears, talks and love we share each day.  I will continue to Walk to End Alzheimer’s.  It is my purpose and hopefully I will be able to deliver another speech to give others with the disease the courage to carry on and continue to be the best they can be.

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~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s ~

NIH Grants Additional Funding for Alzheimer’s Research

Yesterday was incredible.  For those of you who haven’t heard, the National Institutes of Health (NIH) devoted over $40 million in new funding for Alzheimer’s Disease research!
Dr Francis Collins, Director of the NIH,who made a public commitment to this funding at the Alzheimer’s Association Advocacy Forum in Washington D.C . this past April,  was quoted in the New York Times and said, “The worst thing we could do would be to just hunker down and hold off tackling very important problems.”  He further added, “Obviously, this is high-risk research, but goodness, the stakes are so high that we felt we had to go forward even in the face of the most difficult budget environment that anyone can remember in the N.I.H.”

A major reason we are making this kind of progress is because of all the outstanding Alzheimer’s Association Advocates who are beating on the doors of elected officials, and because of the great work of our national staff in Washington.

Keep up the pressure, we are making some progress in very tough times!!!

I encourage you to read the entire New York Times article here:

http://www.nytimes.com/2013/09/19/health/33-million-grant-for-effort-to-prevent-early-onset-alzheimers.html?_r=0

Executive Director

Executive Director, Alzheimer’s Association of Southeastern Wisconsin

 

Barb’s Buzz – Walk… to End Alzheimer’s

I am a 66 year old woman living with Alzheimer’s disease I was diagnosed at the age of 65. Even though my Mother, Grandmother, Aunt and Great Aunts had the disease, I would sigh and makes excuses for what I called forgetfulness.

Do you want to know why?

It’s because there is an embarrassing stigma attached to one’s announcement of this disease.  People often pity the person with the disease, accept their forgetfulness, and just correct the person’s errors. It’s just plain, difficult to live with.

After some personal soul searching I decided that it is best to be honest and admit that I have the disease. I take my meds. Do my daily chores. Exercise and rest. Tend to my plants and flowers. Do the laundry. Clean the house and pull weeds.

I am still able to write a weekly column for the Kettle Moraine Index, blog, cook, read a book, watch a TV program, sit for my grandchildren, attend a weekly Bible study, visit with my mother-in-law at the nursing home, entertain family and friends with my husband, converse with friends and family.

I find that it is best to let friends and family know what you are living with.

And it’s o.k. to admit that you I need help.  I am very fortunate to have the support and understanding of my loving husband, family, friends and neighbors.

The best thing that has come out of this for my husband and I has been the help and support of the Alzheimer’s Association.  Our support group called “The Memory Makers” has been a wonderful experience. We have met and made a caring group of friends. It encompasses individuals living with Alzheimer’s and their spouses.

This year, “The Memory Makers” will be walking together as a team for the Walk to End Alzheimer’s in Milwaukee County. Family and friends are joining us. There is strength in numbers. You are also welcome to join our team.  And if you can’t walk, consider supporting our team effort through a donation. Together, we will raise awareness to help support the programs and funding for research with the hope upon hope upon hope to find a cure.  Please support us at http://tinyurl.com/q8sauqo

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~ Barbara Cheek Johnson is a journalist living with early stage Alzheimer’s disease~

Barb’s Buzz – Dedicate Yourself to a Cause

American writer and Lecturer Helen Keller said “When one door of happiness closes, another opens.  But often we look so long at the closed door that we do not see one which has been opened for us”.
When I was initially given  the diagnosis of having Alzheimer’s disease, I was in a terrible state of emotions, in denial, depressed, feeling hopeless.   I  realized that I wasn’t escaping this diagnosis after pondering about the women in my family who also lived and died with this depressing sentence that robs you of a normal existence and takes away your pride of self.
I cried and began to pray about it and came to the realization that we are all going to get something that will end our normal every day lives.   The diagnosis  actually turned into an opportunity for me to help others with the same diagnosis as mine.
I’ve turned it into a positive effort.  Look at it as  a way to cope with the stigma of having the disease.   Help the cause to find a cure.  Everyone should own a cause.
To stop pitting yourself.  Turn it into your cause.  t gives one an opportunity to give back.  And to realize to be thankful that you have family, friends, faith in God , Doctors, researchers and the human race.
With my cause, I have been and will be tested  for the sake of finding a cure and will form walks to raise awareness and funding to find a cure.
Turn it into your cause  for ourselves and our future generations.  Doing so will help others, future generations and help you feel better about yourself.
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~ Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease~