Living Well & Fading Slow with Dementia

22 Replies

Living Well & Fading Slow by Laurie Scherrer

Dementia is a Slow Process – Sometimes referred to as “Death in Slow Motion”

Dementia does not have a set pattern or schedule. It affects people in brain-cell-deathdifferent ways, often pulling files of “things we don’t do” from the back of our brain. Some PWD (Persons with Dementia) get angry, some cry. Some develop inappropriate sexual behaviors and some become violent. Some have trouble with balance and others have trouble with perception. Some drift off to a far away place, while others get stuck in the past. Some symptoms progress quickly and others are gradual. All symptoms eat away at a part of our memory and our past.

I am one of the estimated 5.3 million Americans diagnosed with Alzheimer’s. I am one of the estimated 200,000 Americans under age 65 trying to adapt to the challenges of each new symptom. I am one of the many PWD advocating for Dementia Awareness and legislative changes to improve the quality of life for PWD and their caregivers.

Alzheimer’s and other dementia related diseases don’t happen over night. They can involve years of challenges, frustrations and changes. Although fiction, the movie “Still Alice” portrayed some of the struggles encountered during the beginning stages of dementia.   The early progression of dementia is extremely frightening. Knowing that you are slowly being robbed of memories and abilities, and knowing the struggles you and your loved ones will deal with gnaws at your heart.

Alzheimer’s is one of many dementia diseases with memory loss and cognitive impairment symptoms strong enough to interrupt the process of daily living. Currently, the only way to diagnosis Alzheimer’s with complete accuracy is by having a neuropathologist examine the brain under a microscope. Since that involves dissecting the brain, the diagnosis will usually be listed as “Suspected Alzheimer’s”.   Regardless of what label is put on the disease, dementia is usually a long process of losing a piece of your brain bit by bit as you, and “those around you”, watch the changes and deal with the challenges. Through most of dementia, there are good moments (seconds, minutes, hours and sometimes days) when the brain seems to give a glimpse of clarity without any confusion.

Frequently people have the idea that PWD don’t know what is happening – not true! At the beginning, most people will deny or find excuses for the changes we are going through and try to cover-up the challenges; but we know. Often, we learn to hide our symptoms so well that people around us don’t suspect what we are going through.   Most fight to stay in their “normal” world, not wanting to admit the ability to function has changed.   Eventually, the confusion and cognitive impairment can no longer be muted.   As each new symptom takes away another piece of our brain, we ache for the “old me” back, for the comprehension we once had. We watch in agony as our aptitudes slip away and we are no longer able to have a career, multi-task, manage money, drive a car, or take care of our garden.

Many PWD have chosen to fight back by sharing their story and to make adjustments so they can continue a life of adventure, love and laughter for as long as possible. With the help of his family, Glenn Campbell remained active in music for five years after his diagnosis of Mild Cognitive Impairment. President Ronald Regan along with his wife, Nancy, continued speaking for 6 years after his diagnosis. Greg O’Brien, who was diagnosed in 2009 at the age of 59, wrote a book and now, six years later, continues to share his story in hopes of increasing awareness of Early On-set Alzheimer’s. Like the Campbells, O’Briens and Regans, with a good support system many PWD accomplish great things before dementia takes total control. All the while, knowing and often planning for what is to come.

My name is Laurie Scherrer and I have Dementia, suspected to be Early Alzheimer’s and FTD. I may be one of the 200,000 people under 65 diagnosed with Alzheimer’s, but I am more than a statistic. I am an active dementia advocate trying to make a difference and increase understanding of dementia and the stigma of helplessness that goes with it.   Yes, I have changed a lot in the last few years and my life will never be like it was.

For now, with adjustments I am living a life full of laughter and purpose.

Love & Laughter.

Laurie

Dementiadaze.com

© Copyright May 2015 Laurie Scherrer

22 thoughts on “Living Well & Fading Slow with Dementia”

  1. Paulan Gordon

    Laurie, You write so well and have so much insight into this disease. Have you thought of writing a small book to share with others? Thanks for all your advocacy efforts. Every little bit helps.

    Liked by 2 people

    Reply ↓
  2. Laurie Scherrer Post author

    Thank you Paulan. As far as a book – – -Talk about, think about it, just haven’t done it yet. I guess I don’t think it will be interesting enough??? Maybe some day – thanks for the encouragement.

    Like

    Reply ↓
  3. Mike Good

    Hi Laurie, thank you for sharing this story as well as the many others that you have on your site. I too had many misconceptions regarding dementia but I continue to learn from you and others who are fighting back. I am happy you are writing and sharing and so many people can learn from you whether they have dementia or not.

    Liked by 1 person

    Reply ↓
    1. Laurie Scherrer Post author

      Thank you Janine. Stepping out & sharing the diagnosis was very difficult. We went back & forth deciding if we wanted to keep it private. We made the right move! Yes, some friends have dropped off, some people didn’t understand, but most family & friends have been WONDERFUL! As my symptoms get stronger, so does my support. I’ve added you to my prayer list. May God give you peace through this journey.

      Like

      Reply ↓
    1. Laurie Scherrer Post author

      Thank you – I hope these writings help some people deal with the challenges of dementia. Towards the top right corner, You can sign up to receive an email each time I post (generally about once every 3 weeks).

      Like

      Reply ↓
  11. Barbosa

    You are absolutely the best, little sister! I also do need you! Keep writing, keep shining, keep your head high … “When you walk through the storm keep your head up high … and don’t be afraid of the dark …at the end of the storm there’s a golden sky and the sweet silver song of a lark… walk on through the wind, walk on through the rain though your dreams be tossed and blown… walk on, walk on with hope in your heart and you’ll never walk alone … you’ll never walk alone..”

    You are really the best! AND yes, I am sharing your writing with others…

    Barbosa.

    Liked by 1 person

    Reply ↓
  12. Jan's Journey

    Laurie, I loved getting to meet you in person and spend quality time with you at the AFTD Conference. I’ve enjoyed our time in the chat room, but is remarkably different talking and sharing in person. You are a wonderful woman and an outstanding advocate. Thank you for sharing with us. I hope you don’t mind my reposting this, it came up on my memories from last year and would like newly dx’ed people to have the chance to read it. Love, Jan Ford

    Liked by 1 person

    Reply ↓
  13. Jodi C

    Hi,

    I found you somehow thru facebook. My husband was recently diagnosed withearly onset dementia at 45. We will find out in the next few weeks (hopefully) which specific kind he has. My question is can someone have alzheimers and FTD? I thought it was a one or the other situation? Being new to this path it is overwhelming on where to look and what is what.

    Liked by 1 person

    Reply ↓
    2. Laurie Scherrer Post author

      Jodi, I’m so glad you found me! Yes people can have “mixed dementia”. I was diagnosed with Early On-set Alzheimer’s & FTD and have a number of friends from chat groups that are also diagnosed with mixed dementias. One thing I will caution you on; when I was first diagnosed, the doctor put me on Donepezil. I started declining quickly – more confused & disoriented. After 3 months I stopped it and through research found that Deonepezil enhances FTD symptoms. Watch for that. Thank you for commenting.

      Like

      Reply ↓
  14. Janne-Mette Andreassen

    Thank you for the words you give to me
    And others. I feel my days are tough my days are sad my days are confusing my days i strugel to rembemer not to forget. Klem hilsen from Norway
    Janne-Mette

    Liked by 1 person

    Reply ↓
    1. Laurie Scherrer Post author

      Thank you for visiting dementiadaze.com and taking time to comment. I understand your struggles. Some days are just totally challenging and it seems that my dementia daze keeps me in a constant fog. Those days are hard! I try to focus on the positive things in life as much as possible – especially when I don’t feel positive! I have found that writing (a journal or a blog) and taking MANY photos helps me to express my joys and frustrations and also helps me to remember some things that I would have forgotten. I try to review my pictures and some of my journals at least once per week. Hoping you will have many good days! Love & Laughter, Laurie

      Like

      Reply ↓

Leave a comment