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  • The misinformation surrounding Alzheimer's Disease: (Long)

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    Old 01-11-2003, 10:38 AM   #1
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    Unhappy The misinformation surrounding Alzheimer's Disease: (Long)


    The misinformation surrounding Alzheimer's Disease is so frightening and upsetting to me. I am not a nurse. And, I am not a doctor. Nor, am I a medical professional in any way. So, you have to understand that all I know about this disease is from my own experiences and my own research and study. But, I really think that it is time for me to clear the air here, because I run into so much misinformation and such a lack of information about this disease, on a daily; weekly; and a monthly basis. Just as you should take all information about Alzheimer's Disease, with a giant grain of salt; so too, should you "consider the source" of what I am about to say. I find that on-line advise and information about Alzheimer's is worth just exactly what you pay for it, (nothing). So, please take what works for you, take what you know to be true, and throw the rest away. Thank You.

    **************************************** **************
    Alzheimer's Disease is a disease of the brain. If you understand nothing else, please understand this. It is not the result of improper living. It is not the result of not taking care of yourself physically, (and now you are paying the "price" for it). Alzheimer's is a disease of the human brain. It causes the patient to loose cognitive functioning. It causes personality changes. It is a long standing disease that is in effect for years and yet otherwise undetected until symptoms become so great and so grave that the sufferer can no longer function in a normal and a rational manner. Once the disease reaches an epidemic proportion as to impede human response or human activity, then the person is brought to diagnosis, as a last resort, (usually) in order to get a form of treatment and a way to understand and maintain that person in a "normal" (or at least a phudo-normal) surrounding. Because the ability for the persons brain to function "normally" is being impaired, the pereson usually does not know or understand nor is capaple of understanding what is happening to him/her. Often times, but not always a person will be in denial of such a diagnosis or at least be at a stage whereas the diagnosis doesn't really make much sense to that person. Ideally, it would be nice if we could get that diagnosis when we are still aware enough to be a party to our own future and help in the planning stage for such an event. But more often than not, some diagnosis comes at a stage where the disease has progressed so far as to planning by the affected individual is not possiable. (My personal belief in thesse matters is like my grandmother would say, "Why borrow trouble"? My mom's mother had AD; her brother; and she knew very well what AD was. I personally would not tell her the diagnosis when it finally at long last came,,,,why upset her any more than I had to?)

    Alzheimer's usually starts out mild. Forgetting little things. But then we all do that, don't we? So, unless or until it gets to a point of great concern, or a point where every day normal activities are being greatly impeded, no one pays much attention to all those "little signs". Alzheimer's progresses slowly. How slowly? Mostly there are anywhere from 3-7 years in-between stages. And yes, there are more than three stages. There are actually 7 stages. But, three are usually the only important ones.

    STAGE 1 Where the person can still, for the most part be independent, but where they must realize that this independence is finite. In early detection, and if not in "Early Onset Alzheimer's", (under 60 years of age); then, this stage can last up to 7-10 years.

    STAGE 2: The patient is not independent, and can not be left alone. The brain is impaired to the point that full time care or at least full time supervision is required. A person in this stage can function most of the time with little trouble, if tasks are simple and limited to lower brain functioning. Stress however, brings on a complete breakdown in normal functioning, and should be avoided at all costs. Patients in this stage need constant support and guidance to maintain normalcy. Their brain is not always there to support and guide them properly. Or, and this is most important, "to PROTECT THEM properly". So, in this stage, safety or the patient, is a big issue. Driving a car, cooking food and other things that are of a safety concern, should be monitored at all times. The person may make improper responses in conversations, be forgetful, be agitated even angery. But, all care should be taken to give the patient at least a similance of independance. They are after all adults, and it is not nice to take their dignity away. Good social skills and communication skills are required in this stage, for the caregivers.

    STAGE 3 This is the stage where not only mental impairment is being increased, but a physical impairment is noticed as well. The body (now), is not getting the right signals from the brain. Wherein the middle stage of AD a person can not drive a car, now the person does not understand why you can not get into a car and "take them to their mom's house". (A mom and a house that has been gone, all but in their mind, for over 50 years). A person in the last stage of the disease, not only can no longer read a book like they could in the first stage or the second stage; but, who now doesn't even understand a book when it is read to THEM. A person in stage 1 or stage 2 can walk, usually without help. But now in stage three walking seams to be too complicated an effort, for the (severely brain damaged) AD sufferer. Sometimes, even the act of feeding and food management becomes too much for them. (The swallowing and breathing reflex is the last to go). A person in stage 3 needs full time support, full time care. And, not just care but most times, they need around the clock nursing. Skin breakdowns, bed-sores, incontenance, and walkers and wheelchairs are the order of the day. At this point, in the disease phase is where it gets to be the cruelest. Cruel, because not only the mind now can not function as it once did, but the body too now seams to be an enemy; a prison; a confinement from which there seams to be no escape.

    As indicated above, Alzheimer's is a long lasting, (lifetime) disease that is progressive, and a disease for which there is no cure. Alzheimer's is a disease of the brain. But, it is also a disease of the spirit. As, the human brain makes us what we are. It is the brain that holds the personality, the personage the very identity of the person. You might say, "The Human Soul". It is THIS attack, that makes this disease so very monstrous. Anyone can get heart disease, cancer, aids. And, Lord knows, it is not my intention here to minimize any of those awful diseases! But only Alzheimer's, can take your very SELF....What makes you,....YOU.

    It is not the loss of the mere body that we caregivers grieve about,,,,,IT IS THE LOSS OF THE PERSON. It is A LIVING DEATH.

    (And, as I have, now, seen both sides of this disease, as my mom passed away in 1998), I can now say, "Loosing someone and loosing someone to Alzheimer's is not the same thing. I can get over the loss of my mother. I can grieve normally for that...But what is hard, what is really impossible, is getting over her Alzheimer's. Getting over how it slowly took her away in her mind. (15-25 years) And, by taking away her mind piece by piece, cell by cell, day by day, she lost everything that she loved. Everything that loved her. Everything that meant something to her, she lost,,,,slowly,,,,surely,,,,and steadily. Year after horrible year, she lost her independence; her relationship with friends, husband, kids, church and club friends,,,,,everything slowly disappeared in the black emptiness of Alzheimer's. Her clothes, her furniture, her home,,,,,everything went away,,,,slowly, inch by inch, piece by piece, cell by cell. One of the last things she said to me was,
    "Boy, you sure have a lot of dolls". (All those dolls in her room, were HER's. Collected one by one. Each with a special story. Over 32 in all. But, now quite forgotten, the knowledge of "Ownership", a long forgotten concept, now left by the wayside, of what once was her beautiful mind).

    Some ask, how do you live with this, how do you deal with a loved one with Alzheimer's? I don't know. How do you deal with someone you love suffering with Alzheimer's for over 20 years, and see such devastation that tormented through their lives because of this hideous disease? And, then just be content with the shallow phrase of, "At least she isn't suffering anymore?" How do you reconcile that? Because you see, the REAL question is not that she isn't suffering any more. It's why did she have to suffer like that, at all? Why did everything that she love,,,,leave her? Why didn't we know? What could we have done? WHY DIDN'T ANY ONE TELL US,,,,IF IT HAD TO HAPPEN AT AL; THEN, WHY COULDN'T IT HAVE BEEN BETTER, EASIER ? WHY DIDN'T WE SEE IT SOONER? WHY DIDN'T WE GET MORE HELP, BETTER ADVISE, MORE SUPPORT?

    No, my friends. Alzheimer's is truly the disease that keeps on giving. I've heard so many say,,,,"well, when this is all over". Or, "When I can live a "normal" live for a change". No, my friend, it will never be "OVER". Alzheimer's keeps on giving pain and suffering and even the blessedness of death will not quench the flames of sorrow. It is truly the gift that keeps on giving. It keeps on giving pain, grief, guilt, anger,,,and all kinds of stuff. But, it taught me. It taught me well, that life is finite, life is truly precious. CELEBRATE LIFE MY FRIENDS....TAKE JOY AND PLEASURE IN LIFE. And, most importently keep loveing and being loved. It's all we have to hold onto.

    I don't mean to be a "downer". Not for anyone, but especially for those of you who are new to this. There is hope! There are answers. Medications help. They postpone the inevitable. They make functioning with AD easier and can keep someone functioning and stable mentally and physically longer. So, get proper medical advise and help early. And, keep up the communications with the medical professionals. The right caregiving attitude also, is so very important. Be positive. Be loving, and caring. Laugh, smile and thank God for every blessed day. Every day is precious and gives us an opportunity to love and be loved.

    But, make no mistake my friend.; Alzheimer's is a disease of the BRAIN. It attacks the brain and it eats it alive. (Oh sure, it may take 10-20 years, but it's a "brain eater" never-the-less). There is no cure, but you can make it better with drugs, the right care attitude and love. Also, the right information and knowledge helps too. Do some on-line research. Read all you can and get a good support group going for yourself. Friends, family, and community resources can help. A good medical team and good medical advise is a must !!! Alzheimer's is long term; and, it is progressive. It will not get better, stay where it is, or go away. It will get worse! You can stall it off, but you can not stop it. It is not a brain injury. It is not caused by brain injury. Even though treatment for brain injury is the same as AD, Ad and brain injury are two different things altogether. It is not caused by alcoholism, or drinking to much. Or by eating foods from tin cans, smoking, car exhause fumes, permissive sexual activity, drinking unflorinated water, too few or too many vitamins, or by any other wacky idea. Alzheimer's is not an allergy, it is not a reaction to medications, or a chemical imbalance of the body.

    Alzheimer's is a disease, a disease of the brain. The only way to definitively diagnosis Alzheimer's is through autopsy. The way it is finally diagnosed for sure, is to take a frozen section of the brain and look at it under the microscope. The normal human brain looks like cauliflower, while an Alzheimer's brain looks like cauliflower with holes in it. Lots and lots of holes, where "nothing" but air resides. These air pockets (or holes), impede electrical impulses ~ that is the thought process. Thought travels through the brain by electrical impulse surges. These holes short circuit the impulse and the thought becomes fragmented, (has no place to go, or has no clear pathway. It's like traveling on a highway where there are holes 300 feet deep in various places in the pavement. So, your car (thoughts), has wings, and it fly's to another highway, but which one to complete the "thought" properly? Which thought is real, a dream, a nightmare, remembered from another time period of your life, out of phase, out of sinc, or just plain diss-embodied? Sometimes a thought hits one of those holes and just stops. Just vanishes in a little puff of smoke, because it has no place to go to. Sometimes a thought that starts out as "I'm Cold", finishes up with, "Isn't there anything good on TV?" and you get a mixed up mess like, "I want a TV Dinner tonight; but, I don't want any cold feet in it". (So somewhere in that mixed-up, fragmented thought process, I guess that the sub-conscience wanted to also say that this person is hungry also).

    Alzheimer's is NOT Dementia. It may be one form of Dementia, as "Dementia" is a general term used to denote that a person has a general cognitive impairment. But, Alzheimer's is not Dementia. And Dementia is not Alzheimer's. Alzheimer's is not brain injury. A physical injury to the brain can cause "Alzheimer's type symptoms". But Alzheimer's is not brain injury. They can be teated, medically the same way. The same durgs, treatments, and care standards, and care attitudes, can be effective for both brain injury patients and Alzheimer's patients. People with brain damage and people with Alzheimer's can be effected similarly or behave in the same ways. Have the same type of care concerns, etc... But, Alzheimer's and physical brain injury are not the same thing. Alzheimer's is a hideous, horrible disease ,,, AND I HATE IT !!!!!

    All the symptoms of Alzheimer's disease can be treated successfully with the right drugs. Depression, anxiety, paranoia, compulsion, confusion, delusion, psychosis, anger, aggressive behavior, and memory impairment, just to name a few. But, what I really want you to know is that Alzheimer's is never the person's fault that has the disease. It is never through their fault,,, they are a victim here.!!! Alzheimer's is no respecter of persons. We are all at risk.

    Therefore, it will behoove you that if you know someone with this awful disease; threat them as YOU would want to be treated. With love, kindness, understanding and charity. Because TRULY,,,,," THERE BUT FOR THE GRACE OF GOD... GO I "


    [This message has been edited by moderator2 (edited 01-11-2003).]

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    Old 01-12-2003, 02:42 PM   #2
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    Very, very good post.

    Old 01-19-2003, 09:26 PM   #3
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    gizmolove, yes I agree. I feel your pain as I feel my own for my dad's suffering. He is gone now but in his wake the hurt sorrow for his unending suffering-I still does not go away for me. I miss him and I will always miss my father. I do not know if I will forever feel the suffering...I cry as I write...Thank you for your generous post. I am sorry for your pain and loss. Rebeckah

    Old 01-20-2003, 08:35 AM   #4
    William J. Coyne
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    You have written a very touching and accurate account of your labor of love and suffering. There seems to be no way out. I have heard of a surgical procedure known as Cognishunt which hopefully will prevent further progression. It is being tried in several locations across the country. Briefly it consists of a shunt placed in the brain and a tube under the skin to the abdominal area where the cerebral fluid is drained. It keeps patients at their current cognitive impairment level but does not offer a cure. However, at this time it offers some hope to the Alzheimer commmunity. Bill Coyne (Can anyone provide more information?)

    Old 01-28-2003, 09:17 PM   #5
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    [This message has been edited by moderator2 (edited 01-29-2003).]

    Old 01-29-2003, 11:02 AM   #6
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    That prayer was posted 1-02-2003. Beautiful prayer
    and the long message, today, was well done, too.

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