I-Pads, I-Phones, PDA’s, Droids and Blackberry’s, are just some of the amazing and wildly popular gadgets that provide us with access to the voices and thoughts of friends, family and work.
Prior to the planned release of each new product, there are video teasers, buzz and hype: all generated to ensure a pent up demand for the product. Folks then will themselves to stand in line for hours or even camp out for a shot at being one of the first to take ownership of one of these marvels.
The rush is then on, via one of these devices, to connect, re-connect, or to stay connected externally with others in faster, more colorful, or more adaptive ways.
But what of that internal high-speed wireless extrasensory device we all came equipped with when we arrived here? I’m referring here to what has come to be known as our own inner voice. That inner voice is your original equipment manufacturers perpetual intranet connection between your Spirit and that higher power we associate with a Universal Divinity.
What if we changed the way we viewed the manner in which we stay connected?
On the one hand, we have our very popular external man-made physical products. We crave them because of what they allow us to do. On the other hand, we were all born with a capacity, a gift which we mostly ignore, that offers us a connection. How might are lives be different, perhaps enhanced and enriched if we chose to assign a higher priority to focusing on and consistently accessing that inner voice? That inner voice is our own very unique and personal guidance signal, that once locked onto, will unfailingly serve to guide each of us upon the path we were all meant to follow before we came here.
Learn to tune into and follow that inner voice. Eliminate all of the external noise and visual distractions you allow yourself to be bombarded with. Make an affirmative effort to seek out or create quiet times to zero in on it’s frequency. That voice speaks to you as a soft whisper.
We all were equipped with this feature at birth. In my humble opinion, perhaps one hundred out of every 10,000 people know how to both tune in to their inner voice and willfully follow it’s directives. It is simply connecting with our spiritual selves, to follow and match up our personalities, behaviors and goals with the life’s work that we came here to do.
Choose now and choose today to reestablish your connection with your own private and spiritual I-Phone! You will never hear that inner voice proclaim things like: server error, unable to establish a connection, or, too many requests due to high volume, try again later.
Jeff Dodson
June 30th 2010
Wednesday, June 30, 2010
Tuesday, June 22, 2010
Don't Give Up On Me: I'm Still Here!
The thought occurred to me of what it might feel like to be in the shoes of an person residing in a nursing facility having been diagnosed with Alzheimer’s. How might if feel from their point of view when family members, doctors and caregivers visit and attend to them? So I closed my eyes and imagined what it might be like in a few different scenarios.
The intention here at the outset is not to mock, belittle, trivialize or devalue the feelings of what an AD patient must endure, but to turn a spotlight upon some of those experiences which they must put up with.
“You think I cannot understand you but I can!”
“Each week son, you come in to visit me. You always say hello and your body language tells me that you have a genuine concern. But invariably, as soon as that resident CNA stops in the room, the two of you start talking about me in my presence as if I were nothing more than an old wheelbarrow with a flattened tire. I may not understand all of the words that you say anymore, but I can damn well understand your body language and that woman’s tone. The both of you talk about me in my presence like I am not even here. It feels outrageous, hurtful, insulting and crushing! If I could say it to the two of you, it would be, ‘shame on the both of you, and by the way, you can both go to hell,’ that’s what I’d say.” ---William Bellamy
“You think that I am soundly asleep and oblivious to the world but I am not!”
“My wife always makes some noise or commotion when coming down the hall to enter my room. Whether it’s the jangling of her keys, or the scuffing sound of her right shoe on the floor, I know that it’s her coming. So I quickly close my eyes as I fall back upon the pillow to feign sleep.
Why do I do this you ask?
This is my way of avoiding seeing her looks of pity rather than empathy as she gazes down upon me. She’ll draw up a chair at the foot of my bed; never close up near me, then pulls out her darning needles to knit and work on a garment while she sits there.
I sneak a furtive peek at her through my squinted eyes. The look on her face betrays the fact that she is relieved that I am sleeping. Relieved that she doesn’t have to make an effort to engage with me in anything meaningful. Relieved that she doesn’t have to enter Alzheimer’s World on this visit today. It is obvious to me that she doesn’t feel comfortable coming and she always keeps her distance. We have been married for 40 years. Has she already written me off and not worth the effort to try and reach anymore?” ---George Steinmetz
“The grandchildren are not afraid of me, yet you believe otherwise.”
“You bring in my grandchildren but hold them back from the side of the bed, not allowing them contact or a closer presence. Why the hell not? Children are observant and honest little souls with curiosity that often overrides apprehension. Let them come up to me, let them talk to me, let them hold my hands, for they will accept me as I am and love me as they find me. If I were to die today, I could find peace alone with just these sweet grandchildren each clutching one of grandma’s wrinkled old hands. My grandchildren are merely curious, concerned, wanting to stay connected to their grandparents. Why do you deny them a part of what life, loving and dying is all about?” ---Bessie Archibald
“The doctor always makes his rounds to see me; he just doesn’t connect with me.”
“My doctor comes to see me once each month. He comes on Saturday mornings before his golf games. This I know because he’s dressed in his blue polo shirt and tan hat perched upon his head. I get a perfunctory and insincere hello, then a few pokes and prods. He jots down a few notes on a clipboard. I try to speak and verbally respond, but it takes me some time to compose my sentences. The doctor smiles and continues with his writing, not looking back up at me to hear me out. I wish I could speak clearly and with better pronunciation than I do now but this goddamned disease has robbed me of that! The doctor gives me one more glance then strolls out the door and down the hall to his next patient. He has six more AD patients like me to see on this floor before he leaves for his golf game. I will see him again next month. The routine and lack of warmth and patience is always the same. I am not a human with feelings and dignity to this doctor any more. Just a source of billable time to Medicare." ---Floyd Dructor
“She’s preparing to leave me, but I see all of it unfolding.”
“My girlfriend comes to see me now just once a week. A pattern of disengagement has already begun. I have sensed and watched it as it has unfolded. It breaks my heart and spirit, yet I cannot put together the words to tell her how I feel.
I once enjoyed her closeness, her kisses, her words of encouragement. There were sometimes tears, but lots of her pretty smiles with those cute pink dimples. Now, she sits further away from me; as if I smell. She brings or holds things now in her hand like her purse to avoid extending a hand out to hold onto mine.
I was diagnosed with early onset familial Alzheimer’s just 2 years ago. We had gotten together a year before my fateful diagnosis. I am 37 and she is 34. She cannot accept nor cope with what has happened to me. In the 3 years that I have had my AD, I’ve had to be placed in a care facility about 4 months ago. The first two months, she came to see me every day. Then last month, her visits began to occur less. I have accepted my fate, but I am not dead yet. Her behavior tells me that she has given up on me. I love her, yet she is in the process of casting me adrift in a Titanic lifeboat. I am still John Smith! I am still here. Don’t give up on me!" ---John Percival Smith
A Lesson to be learned.
Learn how to enter and live in Alzheimer’s World. You have the ability to do this. Your loved one who has this disease is locked within the dark fog of this realm and cannot leave. Don’t give up on them because they now inhabit a strange land. Learn the language and customs and take periodic safari’s to that land. Your loved ones deserve this act of courage and bravery on your part.
Jeff Dodson is a blogger and an advocate of Caregiving
and topics involving Alzheimer’s Disease. He lives and writes
out of Elk Grove, California. He is also reachable on MySpace
and Facebook. E-mail him at: www.imaginatic.com/
The intention here at the outset is not to mock, belittle, trivialize or devalue the feelings of what an AD patient must endure, but to turn a spotlight upon some of those experiences which they must put up with.
“You think I cannot understand you but I can!”
“Each week son, you come in to visit me. You always say hello and your body language tells me that you have a genuine concern. But invariably, as soon as that resident CNA stops in the room, the two of you start talking about me in my presence as if I were nothing more than an old wheelbarrow with a flattened tire. I may not understand all of the words that you say anymore, but I can damn well understand your body language and that woman’s tone. The both of you talk about me in my presence like I am not even here. It feels outrageous, hurtful, insulting and crushing! If I could say it to the two of you, it would be, ‘shame on the both of you, and by the way, you can both go to hell,’ that’s what I’d say.” ---William Bellamy
“You think that I am soundly asleep and oblivious to the world but I am not!”
“My wife always makes some noise or commotion when coming down the hall to enter my room. Whether it’s the jangling of her keys, or the scuffing sound of her right shoe on the floor, I know that it’s her coming. So I quickly close my eyes as I fall back upon the pillow to feign sleep.
Why do I do this you ask?
This is my way of avoiding seeing her looks of pity rather than empathy as she gazes down upon me. She’ll draw up a chair at the foot of my bed; never close up near me, then pulls out her darning needles to knit and work on a garment while she sits there.
I sneak a furtive peek at her through my squinted eyes. The look on her face betrays the fact that she is relieved that I am sleeping. Relieved that she doesn’t have to make an effort to engage with me in anything meaningful. Relieved that she doesn’t have to enter Alzheimer’s World on this visit today. It is obvious to me that she doesn’t feel comfortable coming and she always keeps her distance. We have been married for 40 years. Has she already written me off and not worth the effort to try and reach anymore?” ---George Steinmetz
“The grandchildren are not afraid of me, yet you believe otherwise.”
“You bring in my grandchildren but hold them back from the side of the bed, not allowing them contact or a closer presence. Why the hell not? Children are observant and honest little souls with curiosity that often overrides apprehension. Let them come up to me, let them talk to me, let them hold my hands, for they will accept me as I am and love me as they find me. If I were to die today, I could find peace alone with just these sweet grandchildren each clutching one of grandma’s wrinkled old hands. My grandchildren are merely curious, concerned, wanting to stay connected to their grandparents. Why do you deny them a part of what life, loving and dying is all about?” ---Bessie Archibald
“The doctor always makes his rounds to see me; he just doesn’t connect with me.”
“My doctor comes to see me once each month. He comes on Saturday mornings before his golf games. This I know because he’s dressed in his blue polo shirt and tan hat perched upon his head. I get a perfunctory and insincere hello, then a few pokes and prods. He jots down a few notes on a clipboard. I try to speak and verbally respond, but it takes me some time to compose my sentences. The doctor smiles and continues with his writing, not looking back up at me to hear me out. I wish I could speak clearly and with better pronunciation than I do now but this goddamned disease has robbed me of that! The doctor gives me one more glance then strolls out the door and down the hall to his next patient. He has six more AD patients like me to see on this floor before he leaves for his golf game. I will see him again next month. The routine and lack of warmth and patience is always the same. I am not a human with feelings and dignity to this doctor any more. Just a source of billable time to Medicare." ---Floyd Dructor
“She’s preparing to leave me, but I see all of it unfolding.”
“My girlfriend comes to see me now just once a week. A pattern of disengagement has already begun. I have sensed and watched it as it has unfolded. It breaks my heart and spirit, yet I cannot put together the words to tell her how I feel.
I once enjoyed her closeness, her kisses, her words of encouragement. There were sometimes tears, but lots of her pretty smiles with those cute pink dimples. Now, she sits further away from me; as if I smell. She brings or holds things now in her hand like her purse to avoid extending a hand out to hold onto mine.
I was diagnosed with early onset familial Alzheimer’s just 2 years ago. We had gotten together a year before my fateful diagnosis. I am 37 and she is 34. She cannot accept nor cope with what has happened to me. In the 3 years that I have had my AD, I’ve had to be placed in a care facility about 4 months ago. The first two months, she came to see me every day. Then last month, her visits began to occur less. I have accepted my fate, but I am not dead yet. Her behavior tells me that she has given up on me. I love her, yet she is in the process of casting me adrift in a Titanic lifeboat. I am still John Smith! I am still here. Don’t give up on me!" ---John Percival Smith
A Lesson to be learned.
Learn how to enter and live in Alzheimer’s World. You have the ability to do this. Your loved one who has this disease is locked within the dark fog of this realm and cannot leave. Don’t give up on them because they now inhabit a strange land. Learn the language and customs and take periodic safari’s to that land. Your loved ones deserve this act of courage and bravery on your part.
Jeff Dodson is a blogger and an advocate of Caregiving
and topics involving Alzheimer’s Disease. He lives and writes
out of Elk Grove, California. He is also reachable on MySpace
and Facebook. E-mail him at: www.imaginatic.com/
Friday, June 18, 2010
Unwanted Caregiver Baggage: Anger & Rage
In a previous blog post entitled “The Job You Never Volunteered For”, the circumstances in which one member of a family often winds up being the sole provider of all of the caregiving needs to an adult parent was touched upon.
The emotional feelings that accompany being “tagged” as the caregiver while all of your other capable family members flee the scene boil down to just two: anger and rage.
Anger is felt and simmers away over the fact that there was no democratic round table discussion of how care was going to be dispensed and shared in caring for mom or dad, and, the manner in which all your other siblings and relatives fled the scene and “went dark” (became invisible to radar). What made them all think that I was going to be absolutely ecstatic over the way I was ditched out on?
In time the anger simmers and grows hotter until it becomes an indignant sense of rage inside. Rage over the fact that not only were you left on your own to care for your parents, or patient, but that over time, none of your family members bother to check up on how you are holding up, send you a thoughtful card, or even surprise you with a drop in visit to take you out for lunch or coffee at Starbucks.
The voice in your head, at first faintly, then in time blaring away like a loudspeaker in a drive-thru lane keeps up with the comment: I’m ditched, I’m forgotten, I’m damn well screwed!
Those relatives and siblings that you encounter at any family reunions, (assuming your family still holds them anymore) express concern or sympathy for dear old mom, dad, or grandpa, yet extend nothing towards you in the way of extra help, respite care (filling in for you just once or maybe more often) or financial assistance for the myriad caregiver’s expenses that insurance doesn’t cover.
So the months go by and while you slowly adapt and become accustomed to most of your caregiving tasks, you are still silently stoking that blazing bonfire of rage inside. The problem is this: none of us were designed to retain a flaming blast furnace on the inside. Had each of us come with an Operator’s Manual at birth, nowhere would there be instructions about creating and maintaining such a furnace on our insides. All that heat and rage begins to corrode away at you.
Your immune system becomes one of it’s two primary victims, while the other one is your outward attitude. But before it really gets this far, the decision you must make is how and when are you going to jettison that furnace of rage?
While you may be one of the rare individuals who has successfully walked over red-hot coals once at an Anthony Robbins Weekend Retreat, you were never meant to swallow them down and hold them in your gut!
Ask yourself, what positive thing is the hot coal furnace doing for you? Answer: nothing good!
The solution is: let go of the rage, let go of the pain, let go of the frustration, let go of the hate. Do yourself a huge favor by choosing not to own it any longer.
Consider substituting the hot coal furnace with something pleasant and rewarding. Hell, why not? When you begin to think about it, what initially felt like a suck-ass gig; you have become damn well proficient and competent at! Just look at the skill sets you now possess. You’ve come a long way in overcoming the fear and trepidation in dispensing medications, giving injections, handling patient crying jags, mood swings, hostility, expertly folding, moving and dealing with wheelchairs, canes, Merri-walkers, portable oxygen units, glucose meters, etc.
You are a damned good and worthy person! That’s a fact.
You are appreciated by your patient that you are providing care for in more ways than they may show or say to you at times. You can assume correctly that you are high on the list of their daily prayers. You have prevailed and weathered through a tough storm!
It is a probable sure bet that any of the relatives that bailed on you way back when would not have survived and made the cut like you have. I’m not advocating substituting smugness here for rage. I’m advocating dumping the rage and get used to acknowledging and positively validating yourself at the end of each day for the caregiving work that you have come to dispense with.
Perhaps this blog should close with this suggested end-of-the-day affirmation for those who are Caregivers:
Thank You Heavenly Father for my health and strength.
Thank You for the courage and tenacity you have bestowed upon me to care for (relative’s name).
Thank You for allowing me to master the skills of a successful caregiver.
Tomorrow is a new day that I look forward to with your help in providing heartfelt service and compassion.
I am proud of what you have helped me become for the better.
I am strong and I will grow stronger as I let go of the negative energy I once held.
Jeff Dodson is a Writer and Advocate of Alzheimer’s Research and Caregiving.
He lives in Elk Grove, California.
E-mail him at: www.imaginatic@frontier.com
or his Blog Site at: www. nvlwtrdodson.blogspot.com/
The emotional feelings that accompany being “tagged” as the caregiver while all of your other capable family members flee the scene boil down to just two: anger and rage.
Anger is felt and simmers away over the fact that there was no democratic round table discussion of how care was going to be dispensed and shared in caring for mom or dad, and, the manner in which all your other siblings and relatives fled the scene and “went dark” (became invisible to radar). What made them all think that I was going to be absolutely ecstatic over the way I was ditched out on?
In time the anger simmers and grows hotter until it becomes an indignant sense of rage inside. Rage over the fact that not only were you left on your own to care for your parents, or patient, but that over time, none of your family members bother to check up on how you are holding up, send you a thoughtful card, or even surprise you with a drop in visit to take you out for lunch or coffee at Starbucks.
The voice in your head, at first faintly, then in time blaring away like a loudspeaker in a drive-thru lane keeps up with the comment: I’m ditched, I’m forgotten, I’m damn well screwed!
Those relatives and siblings that you encounter at any family reunions, (assuming your family still holds them anymore) express concern or sympathy for dear old mom, dad, or grandpa, yet extend nothing towards you in the way of extra help, respite care (filling in for you just once or maybe more often) or financial assistance for the myriad caregiver’s expenses that insurance doesn’t cover.
So the months go by and while you slowly adapt and become accustomed to most of your caregiving tasks, you are still silently stoking that blazing bonfire of rage inside. The problem is this: none of us were designed to retain a flaming blast furnace on the inside. Had each of us come with an Operator’s Manual at birth, nowhere would there be instructions about creating and maintaining such a furnace on our insides. All that heat and rage begins to corrode away at you.
Your immune system becomes one of it’s two primary victims, while the other one is your outward attitude. But before it really gets this far, the decision you must make is how and when are you going to jettison that furnace of rage?
While you may be one of the rare individuals who has successfully walked over red-hot coals once at an Anthony Robbins Weekend Retreat, you were never meant to swallow them down and hold them in your gut!
Ask yourself, what positive thing is the hot coal furnace doing for you? Answer: nothing good!
The solution is: let go of the rage, let go of the pain, let go of the frustration, let go of the hate. Do yourself a huge favor by choosing not to own it any longer.
Consider substituting the hot coal furnace with something pleasant and rewarding. Hell, why not? When you begin to think about it, what initially felt like a suck-ass gig; you have become damn well proficient and competent at! Just look at the skill sets you now possess. You’ve come a long way in overcoming the fear and trepidation in dispensing medications, giving injections, handling patient crying jags, mood swings, hostility, expertly folding, moving and dealing with wheelchairs, canes, Merri-walkers, portable oxygen units, glucose meters, etc.
You are a damned good and worthy person! That’s a fact.
You are appreciated by your patient that you are providing care for in more ways than they may show or say to you at times. You can assume correctly that you are high on the list of their daily prayers. You have prevailed and weathered through a tough storm!
It is a probable sure bet that any of the relatives that bailed on you way back when would not have survived and made the cut like you have. I’m not advocating substituting smugness here for rage. I’m advocating dumping the rage and get used to acknowledging and positively validating yourself at the end of each day for the caregiving work that you have come to dispense with.
Perhaps this blog should close with this suggested end-of-the-day affirmation for those who are Caregivers:
Thank You Heavenly Father for my health and strength.
Thank You for the courage and tenacity you have bestowed upon me to care for (relative’s name).
Thank You for allowing me to master the skills of a successful caregiver.
Tomorrow is a new day that I look forward to with your help in providing heartfelt service and compassion.
I am proud of what you have helped me become for the better.
I am strong and I will grow stronger as I let go of the negative energy I once held.
Jeff Dodson is a Writer and Advocate of Alzheimer’s Research and Caregiving.
He lives in Elk Grove, California.
E-mail him at: www.imaginatic@frontier.com
or his Blog Site at: www. nvlwtrdodson.blogspot.com/
Tuesday, June 15, 2010
Alzheimer's Disease: A Potential Cause May Have Been Detected
On Thursday June 10th 2010, The National Institutes of Health or NIH issued a news release entitled, Gene Linked to Alzheimer’s Disease Plays Key Role in Cell Survival.
Ralph Nixon, M.D., Ph. D., of the Nathan Kline Institute, and the New York University Langone Medical Center, directed the study which involved research in the United States as well as Europe, Canada and Japan. The study appears in the June 10th 2010 online issue of Cell. The study was also supported in part by the Alzheimer’s Association.
The study was also reported on in Medical News Today on June 11th 2010 in an article entitled Role of Gene That Causes Early Onset Alzheimer’s Revealed.
The news release reported that a study funded by the National Institute on Aging (NIA) has shown that the PS1 gene (Presenlin 1) is essential to the function of lysosomes, a cell component that digests and recycles unwanted proteins. Mutations of the PS1 gene have been linked with early onset Alzheimer’s.
Healthy PS1 genes activate lysosome enzymes in a process called autophagy, or the digesting of waste proteins. Autophagy is the cell’s main process of recycling cellular debris and unwanted proteins. These wastes occur naturally, but are overproduced in diseases such as Alzheimer’s and Parkinson’s disease. Mutations in the PS1 gene disrupt autophagy. This impairs the neuron
cells ability to rid itself of waste proteins such as amyloid fragments. The buildup of amyloid fragments and plaque are a hallmark symptom of Alzheimer’s.
Causation of Alzheimer’s Disease may prove to be the result of multiple factors, however, since a disruption in brain cell’s normal cleansing and recycling system appears to promote AD, focusing on a restoration of this process of autophagy offers a promising new therapeutic approach in bringing the disease under control.
At the present time, AD has been found to commence it’s silent attack within the brain cells as much as 10 to 15 years before the symptoms start to become readily apparent to the AD victim and their family members.
What if a gene therapy treatment could be developed that would correct both the mutations of the PS1 gene (causing early onset AD) and prevent the shutdown of the cell’s digesting and recycling process of waste?
This particular line of research is one to keep an eye on going forward.
Ralph Nixon, M.D., Ph. D., of the Nathan Kline Institute, and the New York University Langone Medical Center, directed the study which involved research in the United States as well as Europe, Canada and Japan. The study appears in the June 10th 2010 online issue of Cell. The study was also supported in part by the Alzheimer’s Association.
The study was also reported on in Medical News Today on June 11th 2010 in an article entitled Role of Gene That Causes Early Onset Alzheimer’s Revealed.
The news release reported that a study funded by the National Institute on Aging (NIA) has shown that the PS1 gene (Presenlin 1) is essential to the function of lysosomes, a cell component that digests and recycles unwanted proteins. Mutations of the PS1 gene have been linked with early onset Alzheimer’s.
Healthy PS1 genes activate lysosome enzymes in a process called autophagy, or the digesting of waste proteins. Autophagy is the cell’s main process of recycling cellular debris and unwanted proteins. These wastes occur naturally, but are overproduced in diseases such as Alzheimer’s and Parkinson’s disease. Mutations in the PS1 gene disrupt autophagy. This impairs the neuron
cells ability to rid itself of waste proteins such as amyloid fragments. The buildup of amyloid fragments and plaque are a hallmark symptom of Alzheimer’s.
Causation of Alzheimer’s Disease may prove to be the result of multiple factors, however, since a disruption in brain cell’s normal cleansing and recycling system appears to promote AD, focusing on a restoration of this process of autophagy offers a promising new therapeutic approach in bringing the disease under control.
At the present time, AD has been found to commence it’s silent attack within the brain cells as much as 10 to 15 years before the symptoms start to become readily apparent to the AD victim and their family members.
What if a gene therapy treatment could be developed that would correct both the mutations of the PS1 gene (causing early onset AD) and prevent the shutdown of the cell’s digesting and recycling process of waste?
This particular line of research is one to keep an eye on going forward.
From the Scene of the Mind: An Out of Control Slideshow?
An avalanche of information has been offered up that categorizes the fear, confusion, and befuddlement of the daily experiences of a person afflicted with Alzheimer’s Disease. Words such as confusion, fear, frustration and anger are commonly employed to describe what the AD patient feels or experiences.
My question, however, is this:
Where, if anywhere, has there been someone who has been able to experience the sensory and memory degraded episodes of an AD sufferer, who was then able to reasonably report back on what that vision, that feeling, that confusion was like?
Has there been say, a professional journalist or career reporter, trained in the observational and communication arts, that has firsthand experience with AD and been able to report back as objectively as they could what the experience actually was about?
“This is Rex Fury here, reporting live for KSUX news, on the scene at the corner of Hippocampus Lane and Dentate Gyrus Way. We have just learned of a wild uncontrollable Alzheimer’s memory crash event at this location. Details are sketchy and bizarre but this is what we know at this time...”
For those of us who are caregivers, doctors, nursing home staff, and just loving family members; what exactly is the AD patient feeling, seeing, smelling, tasting and experiencing? Has anyone with AD ever been able to come forward and concisely describe what one of their disruptive sensory / memory experiences is really like?
A family member of ours presently is struggling with mild to moderate AD. One day, I was surprised to hear this person begin to talk about what it is like in experiencing a confusing and frightening AD episode. It was just the two of us and we had been enjoying a private conversation about our family. After a pause, the individual then began to verbally describe a sensory image experience that often occurred at random throughout the day while they were awake. (I’m paraphrasing what was conveyed to me here).
“It is as if you are watching a slide show of events going on around you. Most of the scenes, the people, animals and surroundings are all familiar. Then, out of the blue, a slide pops up with altered scenery. The household furnishings look different. The person I was talking to in the chair across the room suddenly has a different face, or is completely different altogether. The slide show scenes just arbitrarily and quickly jump to something unknown, strange or scary. I cannot stop the slides from appearing as they do nor can I make them go away when they do pop up. Then, without warning, the slide images return to the normal, the recognizable, the comforting.”
As a member of the Baby Boomer generation, the experiences described remind me of the after effects for someone who had taken LSD. The person had “experienced a bad trip” after dropping a dose of LSD. Thereafter, the bad or negative hallucinations or visions would reoccur in the form of “flashback experiences” which were not controllable nor preventable.
Is it possible that the areas of the brain that we now know are affected by AD, were the same ones that were affected by those that took LSD some 40 years previously?
Up to this point in time, I had not heard first hand nor read anything from an AD patient that provided a description like the “slideshow” of how AD raises havoc with one’s cognitive mind and the way it’s sensory experiences are altered.
An out of control “Slideshow” such as what was described to me would certainly unnerve and unsettle anyone else who might have it happen to them. Having it happen to myself many times every day would certainly rattle me to the core.
I now have come to possess a greater appreciation and empathy for my family member and all others who struggle with this miserable disease. I now completely understand the frown and staring off into space look that often overcomes an AD patient.
I would be doing the same damn thing!
My question, however, is this:
Where, if anywhere, has there been someone who has been able to experience the sensory and memory degraded episodes of an AD sufferer, who was then able to reasonably report back on what that vision, that feeling, that confusion was like?
Has there been say, a professional journalist or career reporter, trained in the observational and communication arts, that has firsthand experience with AD and been able to report back as objectively as they could what the experience actually was about?
“This is Rex Fury here, reporting live for KSUX news, on the scene at the corner of Hippocampus Lane and Dentate Gyrus Way. We have just learned of a wild uncontrollable Alzheimer’s memory crash event at this location. Details are sketchy and bizarre but this is what we know at this time...”
For those of us who are caregivers, doctors, nursing home staff, and just loving family members; what exactly is the AD patient feeling, seeing, smelling, tasting and experiencing? Has anyone with AD ever been able to come forward and concisely describe what one of their disruptive sensory / memory experiences is really like?
A family member of ours presently is struggling with mild to moderate AD. One day, I was surprised to hear this person begin to talk about what it is like in experiencing a confusing and frightening AD episode. It was just the two of us and we had been enjoying a private conversation about our family. After a pause, the individual then began to verbally describe a sensory image experience that often occurred at random throughout the day while they were awake. (I’m paraphrasing what was conveyed to me here).
“It is as if you are watching a slide show of events going on around you. Most of the scenes, the people, animals and surroundings are all familiar. Then, out of the blue, a slide pops up with altered scenery. The household furnishings look different. The person I was talking to in the chair across the room suddenly has a different face, or is completely different altogether. The slide show scenes just arbitrarily and quickly jump to something unknown, strange or scary. I cannot stop the slides from appearing as they do nor can I make them go away when they do pop up. Then, without warning, the slide images return to the normal, the recognizable, the comforting.”
As a member of the Baby Boomer generation, the experiences described remind me of the after effects for someone who had taken LSD. The person had “experienced a bad trip” after dropping a dose of LSD. Thereafter, the bad or negative hallucinations or visions would reoccur in the form of “flashback experiences” which were not controllable nor preventable.
Is it possible that the areas of the brain that we now know are affected by AD, were the same ones that were affected by those that took LSD some 40 years previously?
Up to this point in time, I had not heard first hand nor read anything from an AD patient that provided a description like the “slideshow” of how AD raises havoc with one’s cognitive mind and the way it’s sensory experiences are altered.
An out of control “Slideshow” such as what was described to me would certainly unnerve and unsettle anyone else who might have it happen to them. Having it happen to myself many times every day would certainly rattle me to the core.
I now have come to possess a greater appreciation and empathy for my family member and all others who struggle with this miserable disease. I now completely understand the frown and staring off into space look that often overcomes an AD patient.
I would be doing the same damn thing!
Subscribe to:
Posts (Atom)