Barb’s Buzz – A Walk of Olympic Proportions

Recently I walked in two of the seven Walk to End Alzheimer’s events in Southeastern Wisconsin.  The purpose of the walks is to raise awareness of Alzheimer’s disease and funds for research and care and support programs provided by the Alzheimer’s Association.

The speaker at the Waukesha County Walk at Frame Park in Waukesha was Mike Grassel. He was there with his wife Julie at his side.  Mike is truly an inspiration to everyone at the Association.   Mike was involved in a catastrophic automobile accident in his college years more than 25 years ago.   His life has been changed because of it.  Today Mike is 48 years old and lives with his wife Julie.  He struggles with dementia caused by the accident, yet he still continues to work with support from his employer, Walgreens in Brookfield.  Mike and Julie have two loving, supportive adult children.  The crowd was energized and hopeful as he shared his story to the 1300 people that turned out for the Waukesha Walk.

John Brandt was the speaker for the 20th annual Walk to End Alzheimer’s in Milwaukee County, hosted at Mount Mary University.  John was supported on-stage by his lovely wife Peggy and 5-time Olympic gold medalist, Bonnie Blair, who was our Celebrity Walker.  The Alzheimer’s Association is a cause that has been near and dear to Bonnie for over a decade.  Her mother also struggled with dementia.  John is now 73 and has been diagnosed with Alzheimer’s disease.  John and Peggy have three children that live out of state and as he mentioned in his speech he wishes that they lived closer to him.  John’s symptoms became noticeable approximately 4-5 years ago prior to his Alzheimer’s diagnosis in 2012. He was often forgetful and sometimes moody and wasn’t able to follow conversations.  Peggy suggested that they see a doctor. John was scared and told himself that the symptoms would go away.  He felt angry and didn’t want to hear that something might be wrong.  During a visit, his daughter noted the change in his behavior. Before she left, she encouraged her Dad to see a doctor.  John started to realize that he was having problems managing finances and performing stocking duties at Menards, where he was employed.  This time when Peggy encouraged him to see the doctor, he agreed to go. His primary care physician suggested that see a specialist in memory issues. This was a real break-through for John.

Both Mike and John are Champions of Olympic proportions.  They are not afraid to talk about living with Alzheimer’s disease and dementia, and they want to break the stigmas associated with it.  I am proud to say they are my friends.  Today, both John and Mike, and their wives are part of the early-stage support group at the Alzheimer’s Association.  John initially didn’t want to go, but now the group is like his second family.  I am part of this group and I agree… the members and support group leaders are like family to me as well. The early-stage support group is just one of the care and support programs offered by the Alzheimer’s Association for individuals living with the disease and their caregivers.  As John pointed out to more than 2500 folks that attended the Milwaukee Walk, the dollars raised by the Walk to End Alzheimer’s not only supports these wonderful programs, but also helps fund research and provides heightened awareness of the disease within the general public.

John felt honored to be a speaker at the walk and said it was an experience he will never forget.  I feel honored to write a Blog for the Alzheimer’s Association.  It is a creative way to express my feelings about living with Alzheimer’s disease, and also express my gratitude for the love and support that the Association continues to provide for us, our caregivers and family.

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

Olympic Hall of Famer, Bonnie Blair hold the microphone for John Brandt at the Walk to End Alzheimer's in Milwaukee County as wife Peggy looks on

Olympic Hall of Famer, Bonnie Blair holds the microphone for John Brandt at the Walk to End Alzheimer’s in Milwaukee County as wife Peggy looks on

2014 Walk to End Alzheimer’s

The Early Stagers are putting on their walking shoes to prepare  for the 2014 Walk to End Alzheimer’s disease.  The Milwaukee County Walk is on Saturday, October 4 at Mount Mary University campus in Milwaukee.  Registration begins at 8:30 a.m., with the promise garden ceremony at 9:40 a.m. and Walk starting at 10 a.m.

Funds are being raised to provide support and education programs and  fund research to find new medicines and  hopefully a cure to end Alzheimer’s disease.  Those of us living with the disease appreciate the monthly support meetings and discussions at the Alzheimer’s Association office in Milwaukee.

We also enjoy participating in the early stage outings at the monthly Memory Café at Panera Bread in Brookfield along with our spouses and care partners. We bond, play games, sing, are entertained and have lots of fun together.  The friendships made within the group have given us just the support we need.

Those of us living with early-stage Alzheimer’s disease, along with family and friends  will walk for a purpose  on Saturday October 4 to raise awareness and funds and bond together in the hope that someday there will be a way to end Alzheimer’s disease.  My team, Barb’s Memory Makers, along with  Brant’s Buddies will  be walking in the Milwaukee County Walk.  Thanks also to Mike and Julie Grassel’s team, Grassel’s Gang, who raised funds and  walked in the recent walk in Waukesha County.

Join us in our efforts to support our programs and end Alzheimer’s disease.  Register now at http://www.alz.org/walk

Barb and Dan Johnson

Barbara Cheek Johnson is a journalist living with early-stage Alzheimer’s disease.  She and her husband, Dan, will be walking with their team, Barb’s Memory Makers, on October 4th.

Barb’s Buzz – Moving with Alzheimer’s

Dan and I recently took the plunge that many baby boomers face.  We down-sized, moving from our large family home in Delafield to a smaller condominium in Brookfield.  It was difficult. I pulled myself together when saying farewell to the best neighbors we ever had.  I promised them that we would see them again, making plans to meet them for dinner and a movie and have them over when we get settled in our condominium.   We promised our Grandchildren that we will take then to the local pools and parks the next time they visit.

A very nice couple bought our house. They have a son in college and a daughter who is high school age. The new owner said she was looking forward to the pool. She especially liked it because the pool has a heater. To know that the new family is happy there was important to me.

There are so many memories associated with Home. I grew up in the city of Milwaukee, and that had its advantages. I have such fond memories of bicycling to McGovern Park with my two girl friends for tennis and swimming lessons.  I especially liked it because my cousin, John Cheek, was the head Life Guard and taught me to swim.  I felt safe because I knew that he was keeping an eye on me.  He also played tennis with my Dad on the McGovern courts.   Both men were very good tennis players.

But while change can be difficult, sometimes it is good. My husband Dan and I are getting settled in our new place. Every day we open boxes to unpack and find places for our things or take to Goodwill. Until our kitchen is set up, we are enjoying the local eateries and movies at the local theatre. The restaurants have not disappointed us.

Dan is happy frequenting the local Home Depot for supplies to make the condo our own.  Nothing wrong with this picture.  I may have Alzheimer’s disease, but we are busy and happy.  Today my life- long girl friend and her husband, (my cousin John) are visiting us. They too are downsizing and biding their time until their new condo in Denver is built.  Meantime, they do feel like vagabonds.

We are pleased that Dan is so much closer to his office.   As I continue to get organized in our new dwelling, I feel that down-sizing has been a very good decision and experience.  Three neighbors and my cousin who lives in Brookfield have welcomed us with sweet home-made goodies and smiles.

Nothing wrong with this picture :)

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

Barb’s Buzz – The Award

Dan and I recently attended the 28th Annual Wisconsin Network Conference on Alzheimer’s Disease  and related Dementias. It took place at the Kalahari Resort in Wisconsin Dells. We joined several other members of the Early-Stage group and their spouses for the two day conference.  It was rewarding to be there as advocates for the cause. We do have fun together sharing, joking, hugging, complaining, questioning, crying, laughing, and hoping for a cure.

On the first evening of the conference, I was presented with the 2014 Courage Award. I was very honored and grateful to be the recipient of this award. There are many people that are brave, and are facing and living with this reality of change in what was once was a normal life – before Alzheimer’s.

On Day two of the conference, members of our Early- Stage Alzheimer’s group were also invited to speak as a panel during an educational break-out session at the conference.  We spoke about our reactions after receiving the Alzheimer’s diagnosis, as well as accepting life changes in living with Alzheimer’s.

Our sharing of stories and answering questions went very well. We spoke honestly, and emotionally from the heart. I talked about getting lost one day while driving, and having to make the tough decision to give up driving and sell my beautiful car. At the end of the 1 ½ hour dialogue, we received a standing ovation and a round of applause.   I smiled at some of the men in our group who were asked to sign their autographs on programs.  In addition to myself and husband, Dan, the panel included John and Peggy Brandt., Mike and Julie Grassel, and Harlan and Gail Mueller.

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Barb Johnson accompanied by her husband Dan, proudly received the 2014 Courage Award on May 18th at the Wisconsin Network Conference on Alzheimer’s disease and related Dementias.

Barb’s Buzz – I Sang All The Way Home!

Our Early-Stage Alzheimer’s group is growing.  That’s good, and perhaps it is because our professional advisors from the Alzheimer’s Association are keeping us busy with brain stimulating social activities.   And as a result, we are meeting new people who are also living with the disease.

This week our Early-Stage Group met at the Skylight Music Theatre in downtown Milwaukee for an afternoon of musical entertainment.  The program, titled “That’s Amore”, was a wonderful way to spend an afternoon together.  I sang all the way home. Poor Dan- LOL!  He is the one with better vocals! We loved the up-beat entertainment and people in our early-stage group did relate. I witnessed it as I glanced around the room. I could see it in their eyes and body language.  I saw smiles on couples faces, hand-holding and singing and humming along.

“That’s Amore” was all about how care partners share a unique love, worthy of thousands of accolades. That’s how the program read. It makes us realize how much our spouses, who are now our care-givers, give of themselves for their loved ones living with Alzheimer’s disease.

The Skylight Cabaret is now a sweet memory. Thank you from the bottom of my heart-and my mind, for now.

Having this Group has been great. Everyone – people with early-stage Alzheimer’s and their care partners  – have benefitted so much from the monthly meetings.  It’s all about support, information, bonding and friendship building.

We are all learning to cope with the life changes.   My husband and I have made many strong friendships with other couples in the Group.   We look forward to the next Social Activity for our Group at a Water Park in the Wisconsin Dells.

I want to say thank you to the Alzheimer’s Association. They have kept us focused in a very caring and positive way.

Dan and Barb Johnson enjoying Skylight Cabaret

Dan and Barb Johnson enjoying Skylight Cabaret

Skylight Cabaret provided a cheery afternoon of song for those with MCI and Early-Stage Alzheimer's

Skylight Cabaret provided a cheery afternoon of song for those with MCI and Early-Stage Alzheimer’s

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 ~