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!

2911_Alzheimers-1005 Barb Johnson small

 

~ 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

2911_Alzheimers-1005 Barb Johnson small

 

~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

2911_Alzheimers-1005 Barb Johnson small
~ Barbara Cheek Johnson is a journalist living with Early-Stage Alzheimer’s disease. ~

Barb’s Buzz – Modifying Holiday Traditions

The holidays are fast approaching.  It can be something to look forward to or a stressful time depending on how we handle it.  Before I was diagnosed with early-stage Alzheimer’s disease, I would traditionally bake dozens of Christmas cookies, and scramble to get my shopping list in order for presents to purchase for those on my list.

My husband Dan and I would usually host Thanksgiving dinner and my sister and brother-in-law would host the Christmas Eve celebration.  Sadly my sister-in-law, brother-in-law  and my only sibling, my brother, have passed away.  So now those long-held traditions have changed.  Our niece, Marin, and her husband Dave, who were are recently married, are hosting Thanksgiving dinner this year.  I am thrilled that the younger generation is taking over Thanksgiving dinner.  It is too much for me to take on now. I will gladly bring something to add to the menu, but I`m relieved not to have to host it.

Other things have changed too.  We have given our Christmas tree to our son and his family.  It will be just the right size for their Chicago condo.  And our nephew has given us his parent’s tall Christmas tree that will look lovely in our condo that we now call home.  How nice it is to keep treasured items in the family.

When life changes and you lose loved ones, we hold on to the memories. Traditions are gifts that come from generations before us to pass on to the next generation.  Hanging stockings over the fireplace to be filled by Jolly old Saint Nick on St. Nick Eve for the kiddies to empty the next morning is one of my favorite traditions.  My creative Mom who also had Alzheimer’s made our stockings years ago, and we still use them. They are personalized with our names.

There are other holiday traditions I still enjoy.  I love getting together to form a group of singers to stroll and sing Christmas carols.  And one of my most favorite traditions is sending and receiving Christmas cards.  The cost of stamps goes up every year, so it is a costly tradition.  I am old fashioned and have already purchased my Christmas cards and will sign, stamp and send them.  I know that living with Alzheimer’s disease might prevent me from signing and sending cards in the future. So I will enjoy this tradition as long as I am able.

I know that the holidays must be simpler now.  But they will still be enjoyed.  My family and I have learned to adjust our expectations and live in the moment.  If you or your family are looking for some ideas on making the holidays simpler for individuals with Alzheimer’s and their caregivers, I would recommend taking a look at this wonderful holiday tips site from the Alzheimer’s Association.  Happy Holidays!

http://www.alz.org/care/alzheimers-dementia-holidays.asp

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

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 – 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 :)

2911_Alzheimers-1005 Barb Johnson small

 

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.

Barb and Dan Johnson small

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