Barb’s Buzz – Socializing with Alzheimer’s

Barb Johnson and Kipton

(Barb, also known as GranB, and her grandson Kipton)

My husband and I had three social events recently.  My husband Dan ‘s cousin’s son got married this summer in Saint Paul, Minnesota. We went to the wedding. The second social event involved a friend and family outing in Door County.  The third was celebrating my cousin’s husband’s 70th birthday.   And then there was a recent lunch with a girl friend from a Bible Study Group that I used to belong to when we lived in Delafield.

The outdoor wedding was a bit tiring.  It was a long drive to Minnesota.  Dan and his brother did all of the driving.  We stayed at a nice hotel in Saint Paul. The wedding ceremony and dinner was at an outdoor venue. It was a long drive, and that, combined with the hot weather experienced at the wedding venue, was a lot to handle for someone with Alzheimer’s disease.

We also recently vacationed in beautiful Door County.  We drove to the Door.   Our son and his family were with my husband and me.  We also met friends and their families in the Door.   Everyone seemed to be having a good time connecting…. except for me.    I felt left out.  Everyone seemed to ignore me.  I felt very alone.  I asked myself, “Were my friends afraid to talk to someone with Alzheimer’s disease?”  Did they think they would catch the disease?  Dan even noticed that our old friends were not embracing me at all.  So I started enjoying myself in the pool with my youngest grandson, Kipton, who was learning to swim.  I started teaching him to swim and relax in the water with his grandma who he calls GranB .  That’s me.  One of our guy friends happened to be at the pool with his son.  He traveled all the way from Australia for this reunion.   He saw me in the pool teaching my youngest grandson how to swim.   It was so nice to run into a friend from Custer High School.  My husband Dan was also a friend of his at UW- Oshkosh.

As the vacation group was getting ready to part ways, I asked myself again,” Why did my old friends treat me like an outsider?” I may have Alzheimer’s disease, but I am Still Barb.   Later, on our way home, I thought about friendships in general and how important it is to have them, and to be invited to things – weddings, parties, and lunch dates.  People with Alzheimer’s need to stay engaged and keep their self-esteem.  The next day we attended our early-stage Alzheimer’s support group meeting at the Alzheimer’s Association office.  And it reminded me of the incredible new friends we have met on this Alzheimer’s journey.

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

Barb’s Buzz – A Real Friend Stays By Your Side When the Rest of the World Walks Out

Johnson, Zacharias, Wallrath
(left) Barbara Cheek Johnson, Lynne Ebert Zacharias, Jeanne Ketterer Wallrath

Friends are so important, especially as you navigate Alzheimer’s disease.  It is a journey with many unknowns.  And you need true friends.  Life- long friends.  I am lucky – I have those.

I just hosted an incredibly fun “girlfriends sleepover weekend” with three of those friends in June.  We spent three wonderful days together.  The thought of four women taking over the house sent my husband, Dan, to Chicago to visit the grandkids! But we girls all had a fabulous time talking, eating, shopping, talking more, going to restaurants, and chatting on the patio.  We did a lot of talking.  Well, we had a lot of catching up to do.  I tire easily at night because of the medications I take for my Alzheimer’s.  But the girls all understood and let me retreat to my bedroom when I needed to.  That is real friendship!

I met my first life-long friend, Lynne Ebert , in the alley behind our Milwaukee homes.  We were both three years old.  She lived on the other side of our city block.  One day my mom gave me some flowers to plant with a little shovel along the side of our house.  As I was planting, I looked up and there stood Lynne.  She was on roller skates with another little girl.  Both girls rolled up and helped me plant the flowers.  After that, I asked my mom if I could roller skate around the block with them.  The rest is history.  The new girl, Jeanne Ketterer, and I became best friends that day too.

Lynne, Jeanne and I did everything together.  We walked to 35th Street School in Milwaukee every day.  Later when we went to Edison Junior High School, we met another girl named Jeannie Minikel.  She lived near Edison and we often stopped at her house after school to get a treat.  The four of us were inseparable, and went on to attend Custer High School.  Jeannie Minikel and Lynne Ebert made the cheerleading squad.  Jeanne Ketterer and I became Custer Rockets, a dance team that performed at football and baseball games.

After high school we split up, going off to different colleges.  But we never lost touch.  In fact, when I started dating my husband Dan, I reached out to Lynne to see if she knew him as they both were attending the University of Wisconsin-Oshkosh.  She did know him and gave me all the lowdown!

Over 40 years later we are still best friends, having had our 3rd annual girlfriends weekend.  Jeanne Ketterer traveled all the way from Denver to come.  Over these many years we’ve been through a lot collectively – death of a spouse, a divorce, and now me with Alzheimer’s.  But it hasn’t changed our love or acceptance of one another.  Our friendships are stronger than ever.

Real, true friends are important.  Cherish those relationships.  Nurture them.  They can comfort you in some tough times – even Alzheimer’s.

A friend knows the song in my heart and sings it to me when my memory fails.     ~     ~ Donna Roberts

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

Johnson, Zacharias, Hein

(left) Barbara Cheek Johnson, Lynne Ebert Zacharias, Jeannie Minikel Hein

Barb’s Buzz – Advocating on Capitol Hill – Our April Adventure

My husband Dan and I were one of the 1200 advocates in attendance for the Alzheimer’s Association 2016 Advocacy Forum in Washington, DC, April 4-6.  Dan and I packed for our trip the night before.   Our friends in the Purple Canoe Club, Harlan Mueller and Steve Schulz, arranged to help us with transportation to the Airport and back.  Other friends from Southeastern Wisconsin traveling with us to attend the conference were  John and Peggy Brandt, Mike and Julie Grassel , their daughter Stephanie and her fiancé, Mark.

It was a pleasant flight to Washington D.C.  We all stayed at the beautiful Wardman Park Marriott Hotel. We attended meetings together.  Stephanie Grassel gave a speech from the heart about her Dad living with Alzheimer disease.  It was very moving. There was not a dry eye in the house.  She received a thundering round of applause.  Dan and I thanked her from the bottom of our hearts for her speech and heart felt delivery.

We had a nice dinner after a long day spent on Capitol Hill, visiting with legislators, sharing the stories of our Alzheimer’s journeys, and advocating for more research funding.  The restaurant was a short walk from the hotel.  It was good to be here in person for the conference.   However I, and others in our group who are living with Alzheimer’s, needed to take time to rest as necessary.

On the last day of the  conference  Dan’s cousin, his wife and his sister joined us for the closing speeches. We then enjoyed dinner at their lovely home in Bethesda Maryland.  The trip went quickly and before you knew it, we were flying home with the rest of our pals.

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

Barb’s Buzz – Alzheimer’s Advocacy Day

My husband Dan and I drove our friends John and Peggy Brandt to our State Capitol in Madison, Wisconsin for Advocacy Day on March 17.  It was a very windy day to climb the “Hill” as the Capitol is referred to in Madison. It felt good to get inside and out of the wind.

We met up with over 100 other advocates from the Alzheimer’s Association at the Capitol Lakes Retirement Center.  There was a warm welcome by Kari Paterson, Executive Director of the  Alzheimer’s Association of South Central Wisconsin. Tim Harrington, Development Coordinator, Workplace Relations and Advocacy Focus for the Alzheimer’s Association of Southeastern Wisconsin gave a recap of advocacy efforts in 2015. By the time the day was coming to a close, I was  exhausted  ) ;  I just wanted to curl up and nap.

From the hand out information I was given, I found this statistic to be impactful:  More than 28 million Baby Boomers in the United States are expected to develop Alzheimer’s disease between 2015 and 2050.   My hope is that the medical community will continue to research this disease so that the next generation will be free of it.

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

Barb’s Buzz – Be Hopeful and Thankful

Since I broke my right wrist from a slip and fall incident on a slippery, snow covered sidewalk last winter, I am afraid to venture out in the winter. I know that I will remember to be more cautious.  But I think about myself and my ability to navigate safely as Alzheimer’s disease progresses.

I am hopeful that with research our medical community can continue to develop medicines to keep those of us with Alzheimer’s and related dementias alert and help keep our ability to remember. The medical research community welcomes people to participate in studies.  I have been a research participant since I was diagnosed with Alzheimer’s disease. I am currently enrolled in a longitudinal study through the Alzheimers Disease Research Center at University of Wisconsin-Madison. I feel like I am contributing to the research to find a cure for Alzheimer’s disease.

I must admit I am thankful for climate warming this winter. The roads and sidewalks are easier to navigate. They are safer for driving and walking. The meetings and Memories in the Making art classes at the Alzheimer’s Association provide a safe haven to share stories, be creative and develop friendships for those with Alzheimer’s disease and their partners. The art therapy classes at Donna Lexa Art Studio gives those with Alzheimer’s disease and other disabilities a safe haven to socialize and be creative with the gentle guidance and teaching art forms with caring art therapists.

The friendships that my husband and I have made are an added gift to our lives.  All I can say is that the Alzheimer’s Association is a safe haven. We are so grateful for the support and the friendships we have made.  I feel hopeful and thankful and gratified for the support.

2911_Alzheimers-1005 Barb Johnson small

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

For more information on how to participate in Alzheimer’s research and clinical trials, visit TrialMatch

Barb’s Buzz – The Little Things That Make the New Year Bright

As my husband Dan and I were putting some of our Christmas gifts away in bedroom drawers, we came across something that our grandson thought he had he lost.  It was the baseball glove that our grandson was wearing when we were playing ball with him at a local park.

My memory is a bit fuzzy.  When it was time to take our grandson back to  his family  in Chicago, we couldn’t find the baseball glove.  We looked all over the house for it.  No baseball glove.

We went back to the park to look for it.  No glove.  So we decided to buy him a new glove.

As Dan was looking for something in one of the drawers in a guest bedroom , lo and behold he found our grandson Ian’s original baseball glove that we thought was lost forever.  We were amazed  and smiled at each other shaking our heads.   So we decided to send him his original baseball glove to him in Richmond, Virginia where his family was celebrating Christmas with his other grandparents.   He will be surprised as we were when what was lost was found.

I have a little prayer that my father James Anthony taught me when I would lose things.  It goes like this:

James Anthony.

James Anthony.

What ever is lost.

Let it be found.

And that’s my little gift to you, my readers.  May our doctors find a cure or medications to keep those with Alzheimer’s disease going so we can find our gift of knowing what to say, what to do, and where to find things once again.  :)

Happy New Year.

Barb in New York

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

Barb’s Buzz – Relax and Enjoy the Holidays

The season has begun.

As my husband and I are driving along in the car, we are noticing more and more Christmas decorations and displays among the houses we pass.  The stores are already filled with holiday shoppers and festive displays.  Soon we will hear bell ringers and Christmas carolers. We enjoy viewing the elaborate light  displays on houses as we drive by or watching children as they visit Santa at our favorite department stores.

Our Christmas gathering changes each year depending on those who will be traveling or staying in town.  This year we have a brand new grand-niece who was born recently.  She is a gift to all of us in the family.

Enjoy everything you do in preparation for the holidays-baking and frosting cookies, finding that special gift for someone, listening to the bell ringers, or watching the excitement of youngsters playing in the snow. Take time to examine a snow flake-each one is different.  Attend a church service and sing, hang a wreath on your front door, put up and decorate a Christmas tree, listen to the carolers, see the smiles on children’s faces, attend Christmas programs at schools or churches. Get together with friends to view the holiday lights. Go and see a movie.

Get into the spirit of the season.  Open up your hearts.  Donate to a cause. Sing along to the holiday music on your favorite radio station.  Build a Snow Man.

Even though Alzheimer’s disease  makes me a bit tired,  I sip that second cup of coffee or hot chocolate, and take time to chat with a friend or family member on the phone or visit a shut in. Put a smile on your face. It is time to enjoy the season.

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

Barb and Dan Johnson are surrounded by their grandchildren, Kipton, Ian and Sophia

Barb and Dan Johnson are surrounded by their grandchildren, Kipton, Ian and Sophia

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!

2911_Alzheimers-1005 Barb Johnson small

~ 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 http://www.alz.org/walk  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.