Barb’s Buzz – Being Grateful & Living with Alzheimer’s

As Halloween takes its last bow, we say goodbye to the jack-o’-lanterns, ghosts, witches and costumed trick or treaters that have both “scared” us and endeared us over the last month.  I just put away the leftover Trick or Treat candy and my witch costume and now I am beginning to decorate and plan my family’s Thanksgiving Day feast.

Hosting Thanksgiving dinner in our home has been an annual tradition for my husband Dan and me.  Preparing the meal is a large task in and of itself.  Purchasing the big bird, along with ingredients for the stuffing, sides and desert must be done first.  Next is rinsing the cavity, stuffing, and then seasoning and basting as the turkey is roasting.  My favorite part of this process is the aroma that stirs up my appetite.

Every one of the guests contribute by  bringing a side dish or dessert  like pumpkin, apple, or cherry pie, lemon bars, brownies or cookies in the shape of pumpkins or leaves.

Now that I have Alzheimer’s disease I appreciate receiving help from my “staff” including our son Michael  and daughter- in- law, Kelly,  our daughter Julie and son- in-law Joe, my nephew Todd and his girl friend Annie,  and my niece Marin and her husband Dave, and their daughters.

My husband Dan will take over this year as head chef. He will help me with putting the turkey in the oven, basting, taking it out of the oven and carving.  He has always carved the turkey and says the prayer of Thanksgiving before the feast.   Everyone seems to pitch in when it’s time to clear the plates and load the dishwasher and clean and dry the large pans by hand.  I appreciate all the helping hands.

I realize since my diagnosis with Alzheimer’s disease that my stamina is much shorter now.  I feel the need to rest more often to regain my energy.   As the saying goes, I am not exactly the same person I was before the disease. Reduced stamina also affects the majority of the human race. It is just basically an aging process – getting older.  I call it my “new normal”.

I am grateful especially at Thanksgiving time for basic good health, good doctors, family and friends and the relationships that both my husband and I have developed in our Alzheimer’s group.  These caring relationships are like family and I am grateful to have them and the Alzheimer’s Association to give us support, encouragement and guidance as we travel this journey together. It is so important to be able to cope day each day, living with the disease, knowing that we have people who care about our well being.

Before I close, I want to share a story that Dan and I experienced recently.  We celebrated our 44th wedding anniversary a few days ago.  We had dinner with two couples from our Alzheimer’s group at the Country Springs Hotel in Waukesha. Dan and I then went on to a symphony orchestra concert at the Performing Arts Center in Milwaukee.  I was so focused on watching the musicians magically play their instruments.  The grand climax featured a well known violinist.  He was so talented that the minute he began playing, my heart stopped beating.  He was absolutely wonderful.   I began to tear up when I heard his story.  He was burned in a terrible house fire.  He recovered after receiving painful plastic surgery, and now lives and plays more beautifully than ever.  He returned to the lime light to share his beautiful music with us.

Experiencing his music and knowing his story helps me accept my Alzheimer’s diagnosis and live with this disease.   Yes, I am grateful!   Live brave and strong as long as you possibly can. You owe it to yourself and your loved ones.  Be yourself – Just do it!

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

Barb’s Buzz – It Was a New York City Minute

I must admit that Alzheimer`s disease is not the best traveling partner.  However, I have it, so it travels with me wherever I go.

When my husband, Dan, and I decided to take a trip to New York City recently, we contacted Dan`s brother and his partner, and Dan`s cousin and his wife to be our travel companions.  New York was a bit daunting for me.  The pace is fast. It made me feel more comfortable, though, to be in the company of five close relatives.  Let`s call our little group the “Traveling Johnsons”.

We stayed at a nice hotel in a great neighborhood near the Flatiron Building and Madison Square Park. It was very convenient to walk around or to take the subway.  We also took a three hour boat tour around Manhattan. Our tour guide was a local actor.  He was interesting, clever and funny, all rolled up in one. He had long hair flowing that extended to his waist.  He was the best tour guide I ever heard.

We knew that Manhattan is loaded with celebrities, but we got unusually lucky, being in the right place at the right time.  We not only saw Pope Francis ride by near the World Trade Center, but also President Obama over on 53rd Street and Lexington Avenue.

One of my favorite evenings was going to Dizzy`s Club, a jazz club where we heard the very talented Bryan Carter Quintet. Dizzy’s is located in Columbus Circle, across from Central Park.

The travels were very tiring for me, especially the long delay we had at the airport as we were starting our journey home.  But, the time I spent with Dan and close family and sharing these remarkable experiences was a gift in my lifetime that I hope I will never forget.
You only live once, right?

Barb in New York

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

Walk with Me with Purpose in Mind

The purpose of the Walk to End Alzheimer’s is to raise awareness of Alzheimer’s disease.   The disease attacks a person’s brain.  It slowly erases memories.  The disease can be genetic, but is not in most cases.  Anyone can be affected by Alzheimer’s.

Individuals with Alzheimer’s begin forgetting daily routines, and how to perform everyday activities like walking, showering, washing your hair, going to the bathroom, getting dressed, talking, sitting, and standing.  They lose their ability to lead a normal life.  They not only are robbed of their self sufficiency, they often must surrender their dignity.    This makes me very sad.

Care partners need lots of extra help to care for their loved one who is no longer independent.  Alzheimer’s has affected many women in my family including myself, my maternal grandmother, my mother, and her sister, my Aunt Anita.  Anita is still living and resides at Luther Manor.  She can no longer talk, feed, dress herself, or bathe by herself.  This makes me very sad.

These dear ones in my life are my reason to keep going and to keep living to the best of my ability.  I will fight this disease.  I will continue to support research and I will never give up hope.  I do this for my daughter, my granddaughter, my cousin whose mother still lives in silence with Alzheimer’s at the Lutheran Home, and for everyone who has been touched by this disease.

Please take part in a Walk to End Alzheimer’s event in your community.  You can locate the event nearest you at  No matter where you walk, you will be on my team, and we will all be walking with this important purpose in mind – let’s put an end to Alzheimer’s disease.

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 at the Walk to End Alzheimer’s in Waukesha and Milwaukee, Wisconsin this September.

The Purple Canoe Club

In June, our early-stage Alzheimer’s group of friends prepared to do something almost everyone loves to do in the summer.  Attend a baseball game.  It was Harlan Mueller’s idea.  He arranged for the group to get in for half price though an AARP promotion.  We bought a block of 25 tickets and with that we found out  the Milwaukee Brewers Baseball Club would identify our group on the scoreboard.

Only problem was our group didn’t have an “official” name.  The next day, Steve Schultz, another member of our group who attends with his wife Peggy, began pondering a name for our group. It was actually something he’d been thinking about for a while.

Steve’s favorite restaurant is “Duke’s Canoe Club” in Hawaii.  He really, really likes their teriyaki tofu.  Duke’s namesake is Duke Paoa Kahaimoku who won an Olympic gold swimming medal in 1912.  He brought surfing to the mainland.  The logo for the establishment incorporates three upright surfboards.

That got Steve thinking. While he didn’t see a direct connection with surfboards he really liked the idea of a canoe club. Of course, there are lots of canoe clubs around the country. Some are groups who go canoeing together. Others paddle kayaks.  But Steve was actually envisioning something more like a big canoe like the Native Americans used and later Lewis and Clark used to explore the Louisiana Purchase. Those canoes were really big and unwieldy. They were hard to paddle, in-fact almost impossible to paddle unless a number of paddlers really worked together as a team.

There it was… the perfect symbolism for our group.  A big canoe that’s hard to paddle alone, but can be paddled by a group of friends working together as a team, even allowing a paddler to rest occasionally while the others keep the vessel on course.  In our case, the friends are a group of couples living and surviving with early-stage Alzheimer’s disease.

Of course, the official color of Alzheimer’s disease is Purple.  And so the Purple Canoe Club was born.  Who knew that a baseball game and a scoreboard opportunity could create so much excitement – and an identity – for our social group.  All thanks to Steve Schultz and his dear wife, Peggy.  We are all in this journey together.  Sharing and supporting each other on this venture.



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

Barb’s Buzz – I Just Want to be Me

Yes, I am living with Alzheimer’s disease. But nevertheless, I have a need to hold on to my sense of self worth.  I want my ideas and opinions heard.  I need to get up and out of my bed each morning, and stretch my arms. Wave them over my head, say hello to myself in the mirror, and ask myself who I want to be today.

I’ve learned it’s important to make a positive statement to yourself every day about how you view life.  I am going to think happy thoughts today. I am going to hear the birds chirping when they soar past me.

I am going to identify the birds as they are flying to their nests. Is it a Robin Red Breast, a Sparrow, a Black-capped Chickadee or a Blue Bird of Happiness? Listen to their songs. Identify the bird calls. And whistle back. They do answer you.  I know. They do make me feel alive and worthy of their songs.

Take time to watch the squirrels scamper up the trees and back down again to bring food to their hungry babies.

My husband Dan and I sat for our granddaughter recently.  She is like a little bird with her baby talk and adorable antics as she plays. Looking at her makes me so happy to be alive.  I taught her to put her toys away, and it actually felt good to be able to teach her something.  Again, that feeling of self-worth is very empowering.

I remember my aunt and my grandmother who were almost blind. They would feel my face and hear my voice and that would make their day.  My advice for anyone living with Alzheimer’s disease or another chronic health condition – do something that pleases you each day. It will help you live and feel a sense of self worth.

Today our group of friends with early-stage Alzheimer’s attended the funeral of a spouse who was the husband and caregiver to a member of our group.  He enjoyed his life as a former Pastor of the church where the funeral was held. We will miss him.  His daughters and other family members and friends will now have the responsibility to take care of our friend with Alzheimer’s who is now a widow. We will all miss him and will continue to nurture our friendship with his wife.

After we returned from the funeral, my husband and I took a walk and enjoyed identifying the birds along the way and the flowers growing in our yard.  My thoughts became consumed with playing with grandchildren and going to an annual family gathering at a lake home in the not too distant future. Life is good.

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

The Importance of Friendships

You might recall the content of my last blog piece about the deer with the broken leg.  The deer never gave up.  She not only survived through the winter, but recovered from her injury and returned to my backyard with not only a limp, but her healthy new fawn.  Her story is inspiring.

If that deer can carry on, so can I.  And what helps me carry on are the friendships that my husband Dan and I have made through the Alzheimer’s Association.  We have added them to our life time friendship list.

Now I want my readers to take the time to think about your friends. Go back in time and recall how you met them. Did you meet through mutual friends in school, at work or play? What did you like about them?  If you have lost touch with them, take the time to find them.  See what they are up to.  Care about the friendship.

I met my husband Dan when I out having fun with a co-worker named Jane.  Neither Jane nor I wanted to go out that evening. Exhausted from our work day with a very demanding boss, we both decided to stay at home. After hours went by, we changed our agenda and went out on the town.  That evening ended up to be pivotal because Jane and I met our future husbands that magical night.

I will never forget her husband tapping me on the shoulder, asking me to introduce him to her. And so I did.

Later that evening, I saw a good friend of mine. He asked me to excuse his appearance.  He wanted to introduce me to his good friend Dan Johnson. I looked up and shook Dan’s hand.  Both guys were sweaty and under dressed after playing basketball at the local YMCA.  I met Dan, my husband, that evening.

What if I had decided to stay home?  The rest is history.

So my point here is – don’t sit and mope because you have Alzheimer’s disease.  Stay active as long as you can.  Be social with your Alzheimer’s friends and your old friends. If they are genuine friends, they will be understanding.  Mine are.

Dan and I have a standing Tuesday Night Movie and Dinner with a couple who are life-long friends.   I have known Tom since grade school and Dolly since high school.  Dan was a fraternity brother of Tom’s in college. Old friends are golden.

I have been a member of a weekly Bible study for years.  It started at church and continued in each other’s homes even throughout our various moves.  The group has been so kind to me since my Alzheimer’s diagnosis.   They truly understand that sometimes I am not always sharp in the discussion and struggle to keep up and answer the questions.

What’s really important here – the socialization and the friendships are far more important than being able to answer all of the questions.  Do not let Alzheimer’s disease get in your way. Enjoy each and every day.

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

Barb’s Buzz – Climbing the Hill

My husband Dan and I recently visited the nation’s capital as advocates for the Alzheimer’s Association. A trip to D.C. is usually exciting. Our son Michael lived in Washington, D.C. for nine and a half years. During that time we were there at least thirty times.  He and his family live in Chicago now.

On this trip, Dan and I were in the thick of the action at the National Advocacy Forum.  More than 1100 people from across the nation were in attendance.   During our time at the conference at the Marriott Hotel in the Wardman Park Area., we met Wisconsin Senators Ron Johnson and Tammy Baldwin and Congressman Jim Sensenbrenner.  Dan and I along with other advocates and representatives from the Alzheimer’s Association chapters in Wisconsin talked about what is needed to eliminate Alzheimer’s including research and care and support services.

At one of the banquets, I met Lisa Genova, the Author of “Still Alice.”  I hugged her, thanked her and told her that I wanted to read her book. My husband does not think that I should read the book. I will give his concern some thought, because I know how depressing it might be.  I know what Alzheimer’s is like. I am living with early-stage Alzheimer’s and I have many other members of my family that have been impacted too.

I have experienced the Alzheimer’s  journey with my strong and light hearted Grandmother, Dorothy,  her sister, my beautiful, talented, dear Mother, and her sister (my aunt)  who is living with Alzheimer’s disease at Luther Manor at age 91.  She is still a beautiful woman but has been silent for many years.  My cousin, Lynn, (her daughter) told me that she spoke to her recently.  Lynn was in shock and very excited about the development.

There is always hope.  That is one of the reasons we traveled to Washington, D.C.  Because we hope that someday there will be no more Alzheimer’s disease.  The three day conference was interesting, exhilarating, educational, emotional and exhausting rolled into one. I participated along with other early- stage couples from Southeastern Wisconsin.  We were there to support each other and listen to the many speeches.  It was exhausting and exciting at the same time for a person living with Alzheimer’s.

But it was well worth it to be together with our group, in force, to learn together, speak about living with Alzheimer’s, ask questions, and listen to other speakers tell their stories.

I hope our voices were heard and that there is hope for the future – through advanced research, greater awareness and one day a cure to end this devastating disease.

Roll Call of the State - Barb and Dan Johnson


(Dan and Barb Johnson take the stage at the 2015 Alzheimer’s Association Advocacy Forum in Washington, D.C.)

Barb’s Buzz – Never Give Up!

 Alzheimer’s disease can be very taxing on the brain of the individual with the disease.  I should know – I have early-stage Alzheimer’s. The disease zaps your energy, your goals, your outlook on life. It drags you down. Sometimes, it drags me way down and makes me so angry that I want to spell it out on the sidewalk and spit on it, then wash it away with a hose!

However to survive with thoughts that bring on depression we – the individuals living with Alzheimer’s –  must fight the disease.  Something I saw out my window this winter gave me the courage to stop feeling sorry for myself. I believe that God gave me courage.

When I saw the deer up on the hill in our back yard limping, I knew that she was injured. She was still there later in the day. I watched her lie down. My husband Dan and I thought that she might have sprained or broken her leg coming down the rocky, snow covered hill. She stayed there on the hill for three days.

During that time, we called the local police department.  An officer came. He was sympathetic and understanding of our feelings. We discussed the option of having him shoot her to put her out of her pain. We decided to let nature take its course.

Dan I would get up in the morning, raise the bedroom shades to see if she was still there, alive.

One morning, we got up, raised the shades. She was gone.

A month later we saw three deer walk through our yard. One deer walked with a limp. Dan and I looked at each other and said in unison “She survived!”  We hugged each other and I said “So will we.”

This is my message: Make the best of each and every day. Walk with courage and a purpose.

And maybe one day, just like the deer, we will be able to walk away too, free of Alzheimer’s disease. Let’s #ENDALZ!

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

The Fall

Seemingly, my day was off to its usual, and mostly unremarkable start. I headed out the front door to get the newspaper. The sidewalk and driveway looked clean. I took my first step, wearing boots, and then it happened. All of a sudden I slipped and fell.  As I went sailing down, I instinctively braced with my right hand. I still landed very hard on my tailbone and wrist. I sat stunned, freezing and shaking, and then crying. I knew that I was hurt pretty severely. I found my way back into the house.  Through sobs I explained to my husband Dan what had happened.  In just minutes, this average, ordinary day was turning into a no good, very bad day.

We immediately headed to the Emergency Room at Waukesha Memorial Hospital. There, they confirmed  I had suffered a bruised tailbone and a fracture in the right wrist. This new, temporary disability has now been added to my ongoing challenge of living with Alzheimer`s disease. I have found that my struggle to avoid getting depressed has become a lot more difficult since my injury.  A part of it is the physical pain. The other part, though, is that it has been a real downer to suddenly lose the ability to do any number of routine things that one takes for granted.

I know that this part will begin to get better soon, and that there is a light at the end of the tunnel for my broken wrist.  I wish I could say the same was true about Alzheimer’s disease.  But I will remain positive. My hope and prayer is that soon, with increased research and funding, we can climb to a higher pedestal –  a world without Alzheimer’s disease.

“The harder you fall, the heavier your heart; the heavier your heart, the stronger you climb; the stronger you climb, the higher your pedestal.” 
Criss Jami

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

Ringing in 2015

It’s a brand New Year.  But some things haven’t changed. O.K. I am still living with Alzheimer’s disease.  And sure – I am still looking to the New Year to give us miracle remedies and some added assurance that living with the disease is do-able with a good Doctor, a strong and caring family, support from friends and the Alzheimer’s Association.

The Alzheimer’s Association has been supportive, educational and a surprisingly great place for my husband Dan and me to form new friendships.  We are thankful to have met so many nice people on this journey. A daughter of one of the members in our Alzheimer’s Support Network opened up her home to us, to ring in the New Year. It was a thoughtful gesture and ringing in the New Year together was a lot of fun! Yes, people with Alzheimer’s disease want to socialize and have fun, just like everyone else.

This bonding with others that my husband and I are experiencing on this journey, is a gift.  We need each other…to cry, hug, laugh and cope together during the venture we are on.  I hope others all over the world who are struggling with this disease, open up their hearts and homes and make the kinds of friendships that our Alzheimer’s Association staff has encouraged and that we have been blessed with.

I hope I will see a cure for this debilitating disease in my life time.  Meantime, I am thankful for the gift of friendships that my husband, my family and I have been given.

Happy New Year!

“A real friend is one who walks in when the rest of the world walks out.”

Walter Winchell

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~ Barbara Cheek Johnson is a journalist living with Early-Stage Alzheimer’s disease. ~