Category Archives: Diagnosis & Testing

Accepting Change

Like the waves hitting the beach, life is constantly changing and we are constantly changing with it. Change is an inevitable part of life. We develop, we age. We laugh, we cry. We dislike, we love. And as our lives transform, we either try to deny or resist the change, take action to modify the change, and/or we embrace the transformation and work with (or through) it.

Although there are many things in our lives we can take control of, not all changes can be modified. Not all changes are welcome. There will always be people, circumstances, occurrences and events that we don’t like and don’t want to have invade our perfect world.

For my husband Roy and I, the major changes came in the form of illness. For me, it was a diagnosis of Early-onset Alzheimer’s and Frontal-temporal Degeneration. For Roy, it was a diagnosis of Common Variable Immune Deficiency. Both are life altering medical conditions that have and will continue to impact our plans, dreams and daily activities.

Throughout my life I have always believed in the power of a positive attitude and grasping each challenge as an opportunity. My house, office and car were a collection of positive affirmations like “If I think I can or can’t – I’m absolutely right”, “If it’s to be, It’s up to me”,

“I have a choice – I can let my mind shape me or I can shape my mind” and many more. Mahatma Gandhi’s famous quote outlines how beliefs shape destiny: “Your beliefs become your thought, Your thoughts become your words, your words become your actions, Your actions become your habits, Your habits become Your values, Your values become your destiny”.

Although positive thinking is not always easy, staying in the habit helped me to accept and often excel through some of my more difficult challenges. However, when I was diagnosed with dementia, I found myself drifting away from a positive attitude. I felt that I couldn’t change things and IT wasn’t up to me and I had NO choice. I felt my little engine that once could, had no control to make it up this hill of life. I was becoming sad and depressed.

After my self-inflicted pity party, I realized that I needed to accept my diagnosis and the changes it would bring and make the best of whatever time I could. I found that the stress and worry of denial and non-acceptance was draining what energy I did have.

“Accept what you cannot change. Change what you cannot accept”. After a period of grief, anger, and denial, I began to seek my old self. I found that once I accepted the changes my life was going to take, I began to appreciate the joy and beauty around me. As my stress lessened – my confusion lessed and my energy level increased. The more I embraced the change with a positive attitude, the more Roy and I were able to discover ways to reduce the amount of “dementia daze” (the state of confusion and disorientation) and the more I was able to feel joy again.

To me, embracing change means accepting that it is unescapable and with a positive disposition determining how to make the best of it. Together, Roy and I are learning to embrace our challenges and modify our objectives and our life style. We are finding some of the things that trigger confusion and figuring out ways to overcome the hurdles that prevented me from enjoying life. “I can’t” has become “How CAN I”.

Yes, I still have challenges and days of confusion, disorientation, fear and emotions. However, most of my days are full of purpose and love. While embracing the challenges of change, we are also embracing every moment with joy.

Love & Laugher,

Laurie

I no longer wanted just to survive with dementia, I wanted to thrive!

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When I was diagnosed with Early On-Set Alzheimer’s and FTD (Fronto-Temporal Degeneration/Dementia) the doctor’s only advise was “Go home, put your affairs in order, see an Elder Care Attorney and come back in six months.” We left his office with the understanding that I would forget my loved ones and die at any time.

This same doom and gloom diagnosis is given to most people diagnosed with dementia. Although the average life expectancy is eight to ten years, there is no encouragement of living a meaningful life. No strategies are offered to identify what triggers dementia episodes and what might help. And no information is provided on support groups or how to connect with others living this journey.

At first, I accepted the doctor’s verdict. Wallowing in self-pity and low esteem, I gave up and set about to prepare for the inevitable. Then I found that there are many people living a meaningful life after diagnosis! Through Dementia Mentors, Virtual Memory Cafes, and Alzheimer’s Speaks Radio, I learned to identify and avoid some of the triggers that aggravate my dementia. Together, my husband Roy and I discovered ways to compensate for many of the hurdles that cause confusion and found that there are many tactics to help people with dementia to live a productive life.

Socializing with other people living with dementia in support groups was wonderful, but I wanted more. I no longer wanted just to survive – I wanted to Thrive! Although I knew I could no longer handle the responsibilities and stress of a job (or the driving), I longed to feel like my life had a purpose. Then I connected with the Dementia Action Alliance and my doors were opened. Finally, a group that focused on quality of life!

The Dementia Action Alliance USA (DAA) is a non-profit national advocacy and education organization of people living with dementia, care partners, friends and dementia specialists committed to creating a better country in which to live with dementia. I have been honored to work with the DAA on many projects/committees and had the privilege of speaking at Re-imagine Life with Dementia Conference in June.

The DAA is making a difference now, not waiting until a cure is found. Funds are needed to continue and expand the fabulous programs and support they offer to make meaningful life possible while living with dementia.

Please consider helping the DAA to improve quality of life for people living with dementia. Your donation can be in honor of someone living with dementia or in memory of a loved one. To learn more about DAA or make a donation please visit DAAnow.org or click this link: https://daanow.org/donate-now/

Thank you for caring and for all your support.

Love & Laughter,

Laurie

Living Well & Fading Slow with Dementia

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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-death different 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

Dear Teenager – This is How Dementia Feels

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Dear Teenager,

To answer your questions, “What does dementia feel like – does it hurt?” I want you to think back on some of the places we went.

When we went to the fun house with all the mirrors everything was funny looking and out of proportion. Although we could tell it was us, it just didn’t look right.

At the big corn maze, we got all turned around and every path looked the same. At first it was fun, but when we thought we would never get out – it was really scary.

After going around & around & around 30 times or so on the “Twister” we couldn’t walk straight and everything was spinning. It was difficult not to run into things.

When you saw ‘Maleficent” in 3D, you told me how real it seemed. When you took the glasses off you could still make it out, but it was all fuzzy and gave you a headache.

My heart was saddened to hear you cry when your classmate unfriended you on FB. In our conversation, you were angry, sad, and frustrated all at the same time.

crazy_mirrors Dementia is kind of like a really bad experience doing all these things at once. If you take all these feelings and put them together at one time, that is how dementia feels on a bad day.

Life seems distorted and out of proportion – things just don’t look right.
I feel trapped in a maze of wacky mirrors – and can’t figure out which way to turn.
My surroundings seem off balance – it’s difficult not to run into things, drop them or knock them over.
Everything seems out of focus – my whole world seems fuzzy and sometimes causes a headache.
My emotions take control – I am frustrated, sad and angry all at the same time.

All these feelings can be mixed together for a few hours or a few days. You ask; “Does it hurt?” Mostly it hurts inside, because I can’t accomplish the things I want to and I know it is not going to get better. But right now is a good moment. So today, for this good moment – – however long it may last, we are going to laugh, take pictures and count our blessing for every moment we can share.”

Love & Laughter, Laurie

Written By Laurie Scherrer

The Diagnosis

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On August 13, 2013, Penn Medicine gave me the “official” diagnosis of Progressive Degenerative Impairment evolving into Alzheimer’s or an FTD. What a total kick when the doctor casually said I should get an attorney to apply for disability. “What do you mean disability?” He obviously did not know how much of a career person I was and how it would impact me when he said I would no longer be able to work. Much has happened since that day. We’ve faced many changes, decisions, tears and laughter.
When & how this started: I think I noticed minor changes as early as 2010, which I figured were stress or just general life changes. Doesn’t everyone go through periods of forgetting things? After my nephew, Andrew died in November 2011, changes became more obvious and more frequent. These I passed off as stress, depression and guilt over Andrew (“if I had only …”). By January 2012, my math ability was pathetic; I was constantly behind in everything, found it difficult to make a decision and I was having problems remembering verbal communication. I knew something was wrong and considered going for counseling.
I had to work longer hours to keep my work organize and accomplish my tasks. Multi-tasking had become impossible as I could only focus on one thing at a time – one conversation, one task, and one piece of paper. I spent over an hour speaking with a new customer and two days later, didn’t remember who she was or the conversation. This progressed to getting lost coming home from work and repeating myself – sometimes the same sentence five times. The more stressed I became the worse it got and as the symptoms progressed, I became more stressed.
After MRIs, Cat Scans, 8 weeks of psychological/neurological evaluations and many doctor appointments, the three doctors referred me to Penn Medicine for a final evaluation and to confirm their suspected diagnosis.
What we have found …
The disease I have is progressing. Although I take medication in hopes of slowing down the progression, there is no cure. At a slow, yet steady pace, we notice and deal with the changes.
What Rick Phelps recently wrote in a chat, expresses a lot of my feelings:
http://phelps2645.blogspot.com/2014/06/today-i-am-thankful.html
What it’s like now …
I have “bad days” or hours where confusion and fatigue take over. At these times, depression and frustration easily kick in as well. We are learning the signs of a “bad moment” and how to deal with them and trying to take advantage of all the good days. There are times that I must have “down time” or just a quiet retreat to let my brain rest.
There are many times when speaking and understanding what is said is challenging, causing me to have to ask people to repeat what they said. I have to work very hard to comprehend what you are saying and even harder to express what I want to say. This is especially difficult when I am with a group and trying to process more than one conversation or thought. Continuous talking/listening wears me out quickly and I just have to escape to silence for a bit.
Sometimes, I don’t remember what I am doing or why. And yet, other times, I wonder why I can’t work – I feel wonderful and “normal”. Generally, mornings are good for me. I get up between 5 and 6:00 a.m. and accomplish as much as possible. By late afternoon, my life usually becomes disrupted and I need to rely on more memory aides. This generally starts with problem-solving difficulties (i.e following a recipe, looking up a phone number, taking care of the wash from beginning to end, etc.) and may progress to difficulty with speech and comprehension.
We have found that the evil confusion gremlins become most anxious when I am away from my comfort zone. Grocery Shopping, for example, is a huge project for me. Dealing with the people, making sure I get everything on the list, use any coupons, and standing in line with a crowd of people talking, is a day’s work for me. And yet, I can put some music on and paint the shed for ten hours without getting tired. I’m still me. That has not changed, but we are learning that adjustments need to be made to keep my life productive.
I’m told that sometimes I say things that are inappropriate, and totally out of my character. I don’t recall doing this, but if I do – – please let me know. I don’t mean it.
Changes …
We are constantly learning ways to modify everyday activities to compensate for the down times.
Meals are prepared in the morning as much as possible.
Reminder notes – I constantly forgot to hit “start”, thus the dishes, clothes, oven or coffee, never finish. So now they say “START” and all I have to do is remember to read the note?
My iPad has made life so much easier. Everything is on my iPad.; contacts, calendar, alarms (to feed the dogs, eat, start dinner), notebook, task list, brain teaser games, etc.. Where I go – it goes.
I participate in many chat groups trying to learn new and better ways to deal with the current symptoms and those to come.
We plan as much as possible for mornings (difficult since we were both night-owls).
When verbal communication is difficult, I don’t answer the phone.
And now this step, we try to educate our friends and family on what to expect.
Life as Usual …
We intend to live our lives to the fullest we possibly can, enjoying every minute we can with our family and friends. We want people to continue to feel like coming over and hanging out. There will be times when I have to walk away and perhaps go lay down or find a quiet place – especially when I am away from home. There will be times when I repeat myself or don’t follow a conversation.
I hope this clarifies some of the questions and concerns about my disease. Please pray for Roy and I, as we face the challenges of Dementia.
Love, Laurie

Dementia Daze Dosage

Dealing with Dementia Daze

Category Archives: Diagnosis & Testing

Accepting Change

I no longer wanted just to survive with dementia, I wanted to thrive!