Now what?

What my brain probably looks like inside! I took this picture while in Berlin, Germany.

Before you read my blog, my husband Bob has started writing notes from the near side. Find his writing in the italic below.

I have a peeve. When Lisa goes into our kitchen and notices that there are “things” lying about that shouldn’t be there, she starts talking to herself (really me), saying “how did the salt get all over the oven?,” “What are those Subway wrappers doing on the countertop? Let me walk over and put them in the trash.” This happens most frequently after she has finished cleaning it. This is early onset passive aggressive behavior. I wish she would stop. I’m not holding my breath.

My journey to where I stand today, started with Shingles, Type 1 Diabetes, Hemiplegic Headaches, a TIA and Aphasia and short-term memory problems.  

I spent time (several appointments) with 5 different highly recommended neurologists, 2 neurophysiologists and a speech therapist to get my verdict/diagnosis of Early Onset Alzheimer’s, Mild Cognitive Impairment, and Aphasia.  It also took about 2-3 years to solidify the final diagnosis.  It seemed to be a struggle to get a concrete diagnosis from each doctor.  I’m not quite sure why; however, when listening to introductions on my group therapy conference calls, other patients described the same exact diagnosis processes I experienced.  It made me feel better.  After being tested and humiliated by each doctor, I just wanted a diagnosis, I wanted to move on and be treated. 

I started to move on and then realized there wasn’t a treatment for my disease, It was going to either stay the same or get worse.  There isn’t a cure for Alzheimer’s yet.  How does one treat MCI and Aphasia?  I try to keep my mind as busy as possible, exercise, eat good foods; yes, I need to eat more green veggies.  I exercise my brain many times a day with computer games, journaling, crossword puzzles, and other puzzles.

I never in a million years would have thought I would be diagnosed with Early Onset Alzheimer’s.  I was also diagnosed with MCI, which is Mild Cognitive Impairment.   My Neurologist scheduled a 4 hour, Neuropsych test session for me; which I had no idea what I was walking into!!!    This was so hard and emotionally stressful to say the least.  They had me take the same exact testing 2 years later; the results were worse.  At this point, there was no doubt my brain was damaged and not getting better.  I can’t explain or describe the fear of reading and hearing my disease was getting worse.  I felt shock, loss, and fear when reading the test results. 

I felt I was losing part of Lisa; what’s going to happen in my future?  I don’t want to be a burden for my husband. How much longer will I have before I can remember my loved ones?  People around me, tell me that’s a long road away…how do they really know?  

After my husband and I wrote an Advance Directive, a Will, and talked about a plan of action, of what I would do if something God forbid happened to him. As I normally do; I read as much about the disease as possible. 

Bob and I met with our girls, our nephew and our grandchildren; letting them know about the results of my tests.  It was surreal for me.  I’m not quite sure how the family felt, my guess is very sad.  I only know that it was a very difficult conversation to have, but I was relieved to know that everyone was now on the same page.  I felt everyone needed to know my altered behavior.

My plan is to beat this disease down.  I have faith that I will be a symbol for others.   I started to try to think of positive thoughts and things to do each day.  I’m starting a bucket list, it’s going to be long, I’m an optimist 

Until next time…

Categories Alzheimers, Dementia, early onset Alzheimer's, Uncategorized

6 thoughts on “Now what?

  1. Best of luck to you girl. Your husband’s little paragraph made me laugh, I must show it to my boyfriend, because early Alzheimer’s and ADHD look so similar. I hear him from the kitchen saying “That’s not where you live, Mister Milk Carton, let’s take you home”.
    ❤ Thinking of you

    I hope it progresses record-breakingly slowly. I hope you enjoy every day and every minute with your loved ones (without suffering that pressure "I must enjoy this! I must!"). I hope the more difficult days are as peaceful as possible and that joy and peace find you at the most unexpected times.

    Liked by 1 person

    1. I keep my husband laughing!!! Poor guy, everyday is like ground hog day. I will try to keep my days interesting and peaceful; you do the same. Thanks for reading my post; I have 11 others.

      Liked by 2 people

      1. just again thank you for letting all of us follow along on your journey!
        I hope you will in return keep enjoying the company of us, your little entourage 😉

        Like

        1. Happy 2020 Werner!!! I’m currently working on my next post which speaks to freeing myself away from dysfunction. How I built my life and career and stories about the industries I worked in. Some funny stories.
          Thank you for your support…it means so much!

          Liked by 1 person

  2. If I may already make a reader ‘s request at this point, it would be you telling the long form story of you and Bob meeting for the first time.
    hopelessly romantic me 😉

    Like

    1. Werner and Karen,

      This is the text from the book Bob is writing; it’s about Bob and I’s courtship! We would love to read about your courtship as well.

      I had made a couple of bad decisions earlier in my life and decided to avoid any romantic entanglements and personal interactions with women. Lisa had a 1 yr. old daughter and was not looking for love in all the wrong places either. A business colleague mentioned Lisa to me. We both decided to dip our toes in the social water.

      We met for the first time in 1991 for lunch at a restaurant in Maplewood, New Jersey, Things didn’t start off very well. While I sat at a table facing the front door. I sat there for about 30 minutes. I saw a young woman come in and sit at the bar. Finally, I got up and walked to the bar, and asked if she was Lisa. She said yes and we had a pleasant lunch and conversation. In the beginning I thought that she might be too young; she admitted later that she felt I might be too old. We confess that neither of us thought about 2019 or studied any actuarial tables. We just enjoyed each other.

      Our first date:

      Shortly after we started dating I invited her to a “show”. ( I say show, she thinks Broadway.) So… we went to the Maplewood theater and watched a movie called “The Commitments”. The music, performed by a young Irish band led by an 18 year old singer with an incredible voice, became a cult classic. For us it became a prophesy. Was it Karma, a harbinger of things to come? My favorite song was “Try a Little Tenderness”. I asked Lisa when I started writing this to name her favorite song from that movie. It was the same one.

      Our first antique purchase:
      “My friends tell me
      I have an intimacy problem.
      But they don’t really know me.–Garry Shandling

      We love antiques, and as I get older I like them even more. Go figure. We stopped at the Flemington, New Jersey flea market, a huge affair covering an acre or more. The sellers set up 8 foot tables upon which they displayed their wares. We stopped in front of a table. There was a very nice curio cabinet. Lisa started jumping up and down, yelling “I love this. We’ve got to buy it!”. I glanced at the man sitting behind the table. He had a wry grin on his face. We bought the cabinet. We have since that day bought and enjoyed dozens of antiques.

      Our first “holding hands thing”:

      “Gravitation can’t be held responsible for people falling in love.“
      Albert Einstein

      We crossed the Delaware River (Yes, the Washington on the prow of the boat one) into New Hope, Pennsylvania to have lunch. We started out in a little cafe that featured an old style counter that was shaped like a “U”. We ate and set out to explore. We got to the curb to cross the busy main street and I gently took her hand in mine.. She accepted it. We have held hands or hugged thousands of times since then, but that memory is crystal clear today, 30 years later.

      My first and last drink:

      It was also our first dinner. I ordered a drink. Lisa said no thanks. She told me that she was in AA and had about 7 years of sobriety. She now has 35 years of sobriety and I have 27 years. I stopped the next day because I didn’t want to lose her. It was easy and I have never regretted it, and never had a strong urge to drink again. I did, however, note that medical pundits over the years would tell us that a glass of wine was actually beneficial to our health.

      Our Marriage

      “I love being married. It’s so great to find one special person you want to annoy you for the rest of your life.” – – Rita Rudner

      It has taken me years to accept the Serenity Prayer, and I’m not in AA. I didn’t start out in life with serenity as the cornerstone of my beliefs. I was a twin and the competition was constant. I railed against what seemed unfair to me. I asked out loud, Why me? Lisa learned “It is what it is” much sooner than me.

      “God grant me the serenity
      to accept the things I cannot change;
      courage to change the things I can;
      and wisdom to know the difference.

      Living one day at a time;
      enjoying one moment at a time;
      accepting hardships as the pathway to peace;
      taking, as He did, this sinful world
      as it is, not as I would have it;
      trusting that He will make all things right
      if I surrender to His Will;
      that I may be reasonably happy in this life
      and supremely happy with Him
      forever in the next.
      Amen.”

      We have been married since 1992.

      Lisa may well have followed the advice below:

      “Spend a few minutes a day really listening to your spouse. No matter how stupid his problems sound to you.” — Megan Mullally.

      These past 28 years have gone quickly. We have a difficult time remembering what even happened B.B. and B.L. (Think B.C.). There have been happy ones, scary ones, “check-to-check” ones, and healthy and sick ones. They were never wealthy ones, unless you count the value of our shared memories, the sounds of laughter, and our undying support for each other.

      Liked by 1 person

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