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Personality (mental) characteristics screening for Alzheimer's
You know how loss of smell can be an early sign of Alzheimer's but not all "loss of smell" indicates a person will develop Alzheimer's. Forgetfulness and confusion can be an early sign but it doesn't always mean the person has Alzheimer's. One symptom by itself doesn't mean that much but if they can put many symptoms together, it might be more meaningful.
How about personality traits? I've known people who get upset or even angry if you cause them to think about something they are not accustomed to thinking about. It's as if "thinking hurts" and they get mad at you if you make them do it. Could this be an early sign of Alzheimer's? |
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I often wonder about the noises and movements. Does anyone else see this in Alzheimer's? What I mean is......mouth noises...sucking, chewing on nothing. Took him to dentist to be sure it's nothing medical......also, obsession with skin...scratching, picking, etc. Dermatologist can't find anything. This is all new behavior. |
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My point is if someone answers "yes, I think this is an early sign of Alzheimers" or if they answer "no, I don't think this is an early sign of Alzheimers", we haven't moved our knowledge of the subject forward one inch, because what someone thinks about the subject is inconsequential unless they have specialized knowledge of the subject. It sounds as if you're dealing with someone who has this tragic disease right now. If you are, you have my thoughts and prayers. If I, who knows very little about the disease were to say to you that I think the noises and movements you are seeing is because of Alzheimers, I wouldn't have helped you at all because I am not qualified to answer the question, and my speculations could do as much harm as good. |
I wasn't aware that permission was needed to ask a question about something that a lot of folks may be going through. If a subject is not something that you feel you are interested in, why do you open it?
Nobody is asking for a professional opinion.....maybe just a little insight into something they are dealing with. |
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Yup. Carry on......
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Is It REALLY Alzheimer's/Dementia Your Loved One is Suffering From?
Read this book and couldn't put it down. Reads like a spy novel, but it's unfortunately non-fiction and extremely well documented. Scary to contemplate how widespread this (Mad Cow Disease) might be. Google "cattle mutilation" and you'll quickly discover >10,000 cattle surgically dissected (by an unknown agency) for the "speculated" purpose of tracking the spread of this disease across America.
Brain Trust: The Hidden Connection Between Mad Cow and Misdiagnosed Alzheimer's Disease Colm A. Kelleher  Below is a copied review of the book that gives a great oversight. >> As a neurologist, I found it frightening November 21, 2004 By Stephen Wong As a trained neurologist working at a school of medicine, I thought I had a fairly good understanding of BSE and its human counterpart, nvCJD. But clinical knowledge is only one piece of the puzzle. Drawing upon epidemiologic, forensic, political, medical, scientific, and historical sources, the author has provided a truly chilling account of the importation of prion disease samples from the small cannabalistic Fore tribe in New Guinea for U.S. animal experimentation in the 1950's and '60's, with credible links to the current epidemic of animal prion disease in North America (CWD or chronic wasting disease, TME or transmissible mink encephalopathy, and BSE), as well as the current epidemic of Alzheimer's disease in developed countries (i.e., those eating mass-produced livestock). The author also speculates that the cattle mutiliations in North America in the past few decades may have been programs designed for the surveillance of prions within the nation's food supply. Some disturbing points made in the book are: 1) 5 - 13% of Alzheimer's Disease (AD) cases that go to autopsy at university medical centers is actually misdiagnosed sporadic CJD (ref: Manuelidis, J. Pathology 1989), alarming since AD is so common and on the rise. 2) BSE, when transmitted to mice, cause neuropathological findings of nvCJD, but surprisingly, may also cause changes indistinguishable from sporadic CJD (ref: Collinge, EMBO Journal 2002 & Science 11/04)... in combination with the above, the implication is that a significant proportion of clinical AD may be due to BSE. 3) CWD (chronic wasting disease), a prion disease of wild animals such as deer and elk, has been spreading rapidly within the past few decades in North America. 4) If infected animals graze on a pasture, that pasture remains infectious to new animals for years... meaning that the disease will be difficult to contain, to say the least. 5) The "species barrier" is weaker than it sounds, i.e., most mammals and birds can contract it from each other. Working in a complex medical system, it's all too familiar to me the fact that families do not pursue post-mortems, diagnoses are not considered, and tests are never 100% reliable. The extra pecautions and higher risk are hindrances to autopsying a patient clinically diagnosed with CJD. Knowing the foibles of human nature, it is almost certain that enormous economic incentives for cattle ranchers and various government agencies have contributed to underreporting and underestimation the potential severity of the problem... which is a shame given that we have the benefit of having observed the same public health fiasco in the UK. It is common dogma that sporadic CJD is not related to nvCJD or BSE, but that statement may be mistaken in light of more current research such as the type cited in the book. I hope that if awareness is promoted via reading this book, suspicion and surveillance for the disease among veterinarians and physicians will increase, and a more accurate picture of the situation will be revealed. As for the book itself, it appears well-researched with references appearing in a detailed appendix. The strength of the work is how the seamless argument is woven together in a highly readable fashion, making it accessible to all. It reads like a first-rate thriller and is hard to put down. I read it in two sittings over a weekend. << |
If you really want to know some of the early signs of Alzheimers, you need only google. "The early signs of Alzheimers." The Alzheimers Association has collected all known facts about the disease.
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Gerry. I am not a medical person. The only time I have had any dealings with involuntary facial movements was when our daughter Helene started her first Chemo several years ago and was given a tranquilizer, phenothiazine, as is generally done, and it caused drug induced Parkinsons that took several weeks to go away. Some people react to certain drugs in different ways. When I googled chewing movements I came up with this for what it is worth. Dystonia Dystonia is the third most common movement disorder, after essential tremor and Parkinson's disease. It is characterized by sustained co-contractions of opposing muscle groups that cause twisting or repetitive movements and abnormal postures. Dystonia is classified according to the number of muscle groups affected. It may be may be focal and limited to one area (such as the face, neck, larynx/vocal cords, or limbs), or it may be generalized and affect the whole body. These conditions can be both painful and debilitating. Aside from medications, dystonias are frequently treated with Botox injections. Patients with regional and generalized dystonias and normal MRI scans may benefit from deep brain stimulation therapy. The following are examples of focal dystonias:
Hemifacial Spasm Hemifacial spasm (HFS) is characterized by involuntary contraction of facial muscles. HFS usually occurs only on one side of the face. Like blepharospasm, the frequency of contractions in hemifacial spasm may range from intermittent to frequent and constant. The unilateral blepharospasm of HFS may be particularly troublesome, interfering with routine tasks such as driving. In addition to medication, patients may respond well to treatment with Botox. HFS may be due to vascular compression of the nerves going to the muscles of the face. For these patients, surgical decompression may result in long-lasting improvement of symptoms. Gerry, I think the proper doctor to consult after your primary care giver would be a neurologist. As I say. I am not a medical person in any way shape or form. But I know what worry is. |
Thanks Gracie, your information is informative. Thanks for posting.
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I had to think back over several decades to the way my father would react to various subjects. This is how one would develop a hypothesis. One would begin by gathering similar observations of others. |
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I'm fairly certain that no testing is being done for mental characteristics that would be noticeable over one's lifetime. Although, there are many Alzheimer's research centers across the country so you never know for sure. Once someone is diagnosed with dementia, I wouldn't be surprised at any unusual behavior. If someone makes unusual sounds or scratching as you indicated, that could very well be a symptom of dementia. But, just the same, it's not a bad idea to have it checked out by a doctor. My father didn't do any of that but had other strange behaviors. My question would be: How did the person behave over many decades prior to being diagnosed with dementia? Were they frequently argumentative? Frequently suspicious? Frequently inflexible in their thinking? |
We also cared for my mother for several years and she then had to go to a facility. We met an amazing man that was a professor at Penn State (MD and Ph.D.), that had a wife in the facility. She had early onset Alzheimer's at 56 and by the time we met her, she was in her mid 60's. She also had been a professor at Penn State and ran both the New York and Boston Marathons. The general population may say people diagnosed with any form of dementia frequently don't remain active mentally and/or physically.
I would see her husband daily and at the end of his visit he would be typing on his lap top. He was compiling data for a research study concerning the patients in this 60 person facility. He had permission from the majority of the family's. He was also working in a facility that was not a private pay. The early findings were many of the generic symptoms of Alzheimer's may not be accurate. I wish I had remained in touch to see where this extensive research went, but lost track of him. I personally appreciate graciegirl for posting an accurate site on what is KNOWN at this TIME. I have thrown my name and address into that organization to be a part of any study they feel will be helpful for future generations. Thus far, I have not be called upon, but actively follow what is being researched. I also agree with Barry concerning the possibility of symptoms being thrown out for any disease that can mimic something totally different. Self diagnosing can be a bad thing and only a discussion of symptoms with your family physician can be an accurate diagnosis. As with any forum, this is the general population with the majority of the members stating their opinions. As long as everyone keeps in mind the symptoms being listed were witnessed with a loved one or friend and may or may not be a precursor for any specific disease. |
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My point was to look for something earlier than those 10 early warning signs that are not all that early, in my opinion. As an example, here's one possibility: When I was 9 years old I remember an incident where my aunt was complaining to everyone in the family that her husband was cheating on her. No one ever believed it for a minute because, well, it was just absurd. Whenever anyone asked her how she knew he was cheating, she would say: "Oh, I know! He can't fool me, I see the way he looks at women when we go out." That's it. That's all she had and she was telling everyone who would listen that he was cheating on her. No one ever suspected it might be an early warning sign of dementia. 10 or more years passed before she was diagnosed with dementia. And guess who took care of her every need? Her husband who she accused of cheating. She got to the point where she couldn't do anything for herself and he would wash her, dress her, put her in her wheel chair and feed her. And he would talk to her as if she might be in there, somewhere, listening. So, I think profound unfounded-suspicion, such as she had, might be an early warning sign, not the everyday suspicions that people normally have. A little suspicion can be a healthy thing when you go shopping for a used car, for example. |
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All of the above
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Mom actually moved up to be near us at age 62, from N.J. to VT. but remained very independent until my stepfather passed; we soon learned he was the "other half of her brain". Spouses often "cover" for the person, who takes guidance from the one without the alzheimers/dementia. LATER ON, although her primary physician , whose specialty was geriatrics, informed me that he could not successfully administer the cognitive test to her in his office (because she was severely demented with alzheimers; his words exactly), at home with us she still had her social skills at age 80. She knew all of our names & of course remembered her youth, her parents, siblings, as the long term memory remains intact. Some, who were formerly meek & passive, become belligerent. Those who were feisty & outgoing may become meek & passive. The theory that those who exercise & stay physically fit do not get alzheimers, is not true. She was very active physically & still got it. In the nursing home Alzheimer wing, were retired Air Force guys, strong & physically fit, tall & imposing......ornery as can be; frustrated with their dementia. There were school teaches, engineers, lawyers, plus people from every walk of life. Nurses would tell us that some were previous athletes. It doesn't matter. My mother lived ten years after diagnosis but probably had it earlier...... .........IF ONE COUNTS HER LOSS OF SENSE OF SMELL........... She would always tell me about that. She was afraid she would not be able to smell the gas. She never had gas up here in Vermont. Her internist told me, after extensive testing following being put on Aricept which caused dizziness......."We've done every test in the book; for her age, your mother is extremely healthy, all of her organs are healthy, etc." He's a neighbor of ours & was actually amazed at what excellent condition she was in for (by now) mid 80's. As I've said before......I'll say again.....it is the "LONG GOODBYE". Getting lost (whether on foot or in the car) is another sign. Forgetting appointments , or else going every day to your hairdresser appointment (as my mom did) was a tipoff....but I still was not thinking Alzheimers when her hairdresser told me those facts , closing with "Your momma is confused". Once, my husband was driving to the bank when he saw my mom walking away from the church (she had assumed it was Sunday, but it was not). She asked him NOT to tell me. The Senior Center gals said she "knew she was confused" but hid it well. Actually, until my stepfather passed, he covered for her, & she was fine in social settings. However, unbeknown to us, until he passed......her refrigerator told another story with dozens of EXPIRED containers. One clue is just looking in their frig. I learned that it was very common. We gave her so many calendars; they all disappeared. She kept losing her purse (it was behind the sofa or in the trash). She loved to watch Lawrence Welk but didn't know how to turn on the t.v. All of her beloved African Violet plants just disappeared. I had her for supper every day, sending her back with a lunch for the next day........finally we realized it would be easier for her to live with us once we moved. She became relaxed once I became her primary caregiver. She was just "relieved" NOT TO HAVE TO THINK ANYMORE, NOR MAKE DECISIONS. She retained a cheerful personality. All of our neighbors commented on how agile she was, walking "like a teenager", quickly and surely. My mom always was a walker...........her entire life. When we moved to Venice, Fl. (which had been the plan prior to my stepdad passing) we obviously had to bring my mom along, closing down her home as well as ours. We were 49 years old; our kids had all graduated college, married, moved out of state........ BUT WE HAD A NEW BABY. She actually traveled well, but got confused in the condo as the "bedrooms were not upstairs". She couldn't turn a sink on (as they were modern). One thing, she was always appreciative of having us there. She, at least, stopped the night time wandering. However, the stress of not knowing what was to come next, convinced us to return to Vermont and our support system & hers. The nurses/social workers at the senior center said that my mom was different in that "she knows she is confused".......WHILE OTHERS ARE IN DENIAL. I kept her at home with us for many years until it was either her or me going to a community care home, followed by a skilled nursing Alzheimers wing. All I can say is that those in the field, caring for these patients, are angels of mercy. I feel blessed she never fell down our stairs as we have three levels in this split. Every morning I was afraid I'd wake up to her at the lower level, fallen. She had Sundowner's Syndrome, so she wandered all night long. She also "saved" her b.m.'s as a gift for me each morning, lining them up on the bathtub edge. ** During the day people told me, "Your mom is fine"......again, many retain their social skills at least in the first stage....or middle stage. ** Or in her pillow case. She passed peacefully, with comfort care (palliative care) on morphine injections pretty close together, after her nursing home doctor (another friend of ours) warned me she could no longer swallow, not even water.......it's what happens at the end. After her passing, I would wake up each night feeling extreme thirst, just imagining what it was like to have water withheld. For those who acknowledge that the soul exists, as does a spiritual realm/afterlife........to comfort me, she came frequently, in dream form, looking young and healthy and happy. It was a blessing to me. I knew she was finally O.K. She appeared for about a year or more........than those visitations tapered off. She had passed on My Italian DAD'S B.DAY and her Ukrainian mom's death date The Stages of Alzheimer's Disease It can be confusing not knowing what to look for when your loved one shows possible symptoms of Alzheimer's disease, especially because it can affect everyone differently. Some people may not have every symptom, while for others, their symptoms may occur at different times. Since Alzheimer's disease can last as long as 20 years, it can be helpful to look at it in terms of stages. Knowing the stages can help give you a general idea of what to expect and how to provide care. Unfortunately, Alzheimer's disease may bring about changes in your family member's overall functioning. Scroll down to find information about the changes you might expect at the mild and moderate stages of Alzheimer's disease and some suggested steps you can take to cope with these changes. Mild Stage Alzheimer's Disease Most people at this stage can still manage many of their daily activities themselves, but they may need some assistance or support to stay organized. Possible Changes: Having trouble carrying out tasks that require multiple steps, like following a recipe Getting lost, even in familiar places Having difficulty performing some household chores Avoiding social situations Having trouble remembering appointments, people's names, or things that happened recently Steps the Caregiver Can Take: Ask a trusted friend or family member to help manage your loved one's money Write reminders to your loved one in the same place, such as a calendar or notepad, to look at often Keep a list near the telephone of the names and telephone numbers of family and friends, along with their photos Put labels or pictures on cabinets, drawers, and closets so that things can be found easily Encourage your loved one to talk about his or her feelings with friends, family, clergy, or other professionals Consider enrolling your loved one in adult education, recreation, or fitness classes to stay physically and mentally alive Moderate Stage Alzheimer's Disease People at this stage may have more trouble taking care of themselves, but they can still be involved in their daily care and follow a comfortable routine. Possible Changes: Needing help to take a bath or shower, choose clothing, or get dressed Needing help setting a table or getting out of a chair Developing sloppy table manners Feeling restless or wandering, especially in the late afternoon or evening Getting suspicious, angry, or easily upset Having trouble recognizing family members Having difficulty expressing oneself and understanding others Steps the Caregiver Can Take: Encourage your loved one to stay involved in things he or she enjoys doing, even if for shorter periods of time Help your loved one share his or her memories with family members by telling stories or creating a scrapbook Speak calmly and clearly – show what you mean as you say it by making sure you have your loved one's attention Plan for exercise and other physical activity during the day to promote sleep at night Research community resources to provide help, such as home healthcare agencies or adult day centers Is It Just Old Age or Is It Alzheimer's Disease? How do you know if it is Alzheimer's disease? As people get older it's common for them to forget things. But at what point is misplacing your car keys considered old age or something worse? Old age can often result in memory loss, whereas Alzheimer's disease can cause loss of cognition, which includes things like memory, understanding, communication, and reasoning. Alzheimer's Disease Symptoms. Here is a checklist of common symptoms to help recognize the warning signs of Alzheimer's disease: Memory Loss and Alzheimer's Disease Forgetting recently learned information is one of the most common early signs of Alzheimer's disease. A person begins to forget more often and is unable to recall the information later. What's Normal Aging? Forgetting names or appointments occasionally. Difficulty Performing Familiar Tasks Because It Could Be Alzheimer's Disease People with Alzheimer's disease often find it hard to plan or complete everyday tasks. Individuals may lose track of the steps needed to prepare a meal, place a telephone call, or play a game. What's Normal Aging? Occasionally forgetting why you came into a room or what you planned to say. Problems with Language May Be a Sign of Alzheimer's Disease People with Alzheimer's disease often forget simple words or substitute unusual words, making their speech or writing hard to understand. They may not be able to find the toothbrush, for example, and instead ask for "that thing for my mouth." What's Normal Aging? Sometimes having trouble finding the right word. Disorientation to Time and Place Due to Alzheimer's Disease People with Alzheimer's disease can become lost in their own neighborhoods, forget where they are and how they got there, and not know how to get back home. What's Normal Aging? Forgetting the day of the week or where you were going. Poor or Decreased Judgment Due to Alzheimer's Disease Those with Alzheimer's disease may dress inappropriately, wearing several layers on a warm day, or little clothing in the cold. They may show poor judgment about money, like giving away large sums to telemarketers. What's Normal Aging? Making a questionable or debatable decision from time to time. Problems with Abstract Thinking–Is It Alzheimer's Disease? Someone with Alzheimer's disease may have unusual difficulty performing complex mental tasks, like forgetting what numbers are and how they should be used. What's Normal Aging? Finding it challenging to balance a checkbook. Misplacing Things–a Sign of Alzheimer's Disease A person with Alzheimer's disease may put things in unusual places: an iron might go in the freezer or a wristwatch in the sugar bowl. What's Normal Aging? Misplacing keys or a wallet temporarily. Changes in Mood or Behavior in Alzheimer's Disease Patients Someone with Alzheimer's disease may show rapid mood swings – from calm to tears to anger – for no apparent reason. What's Normal Aging? Occasionally feeling sad or moody. Changes in Personality Due to Alzheimer's Disease The personalities of people with Alzheimer's disease can change dramatically. They may become extremely confused, suspicious, fearful, or dependent on a family member. What's Normal Aging? People's personalities do change somewhat with age. Loss of Initiative Due to Alzheimer's Disease A person with Alzheimer's disease may become very passive, sitting in front of the TV for hours, sleeping more than usual, or not wanting to do usual activities. What's Normal Aging? Sometimes feeling weary of work or social obligations. |
If a family member had Alzheimers, there is a genetic test that can identify if you may be susceptible or likely to have it. IF you want to know. I don't.
At this time there is little to change things or avert it's happening. What we CAN do is support research. Some very promising things are in the works. And try to live each day we have to the fullest. |
Keep in mind that there are a significant number of dementias besides Alzheimers.
One of the signs of most dementias is a reduction in or loss of "self censuring." The odd things we usually stop ourself from doing aren't filtered out by our "manners". Thus, people say things they would normally think, make odd noises, chew at odd times, etc. And folks with dementia lose their ability to self analyze fairly early. Asking someone with dementia about anything that has changed will likely get denials that they do any of it or that things are different. If you observe major changes in behavior and/or judgement, you need to bring it to the person's doctor's attention. If it is a friend, bring it to the attention of their spouse or family. There are lots of reasons (including things like strokes and tumors) which can cause similar problems - only their doctor can sort them out. And for those who constantly complain (and I am one of them!) about behavior in TV (especially drivers, but also in stores, etc) - that sort of aggressive or irrational behavior can be caused by dementia. And no, you doctor can't see it in a 3 minute exam. |
WOW! There is certainly an awful lot of information given by posters concerning this subject matter and if it does anything it makes clear that Alzheimer's is an issue we are all interested in hearing more about.
My perceptive wife brought to my attention that during our weekly phone calls to home that my Mom seemed confused. so when we were ready to make our annual visit back home i called ahead and made an appointment with a specialist. At this point the rest of my family just thought she was a little confused since my Dad' death. The specialist confirmed my wife's suspicions indicating she was in the stages of mild to moderate Alheimer's. The specialist's admonition was that we not tell my Mom because it would only frighten her. I did abide by the specialist suggestion but toward the difficult end was sorry I did not better prepare her or at least explain why we were doing what we were doing. In short we know our loved ones and we know when they are not themselves. If you see loved ones acting out of the ordinary don't guess and don't play doctor. Do behave as a son daughter brother sister and intervene in their behalf |
There are other diseases that mimic A.D.
http://www.alzfdn.org/RelatedIllnesses/parkinsonsdisease.html
I forgot to mention that many times, although a diagnosis of Alzheimers is given, there are other diseases with similar symptoms. In reality, only at autopsy, (if done) can true Alzheimers be detected......or, that is what I was told when my mom passed in 2003. For instance, in **Parkinson's, note the "diminished sense of smell". At the end of my mom's "Long Goodbye", I was told that she might have a touch of Parkinson's; she was confined to a wheelchair by then. End stage. Could no longer speak. Prior to end stage, garbled speech. Early & middle stages, only those living with the person would fully comprehend the problem, as many hide it well. Symptoms: Parkinson's disease causes motor (movement) and nonmotor symptoms. Clinically, the disease is characterized by a decrease in spontaneous movements, gait difficulty, postural instability, rigidity and tremor. Nonmotor symptoms include diminished sense of smell, low voice volume, painful foot cramps, sleep disturbance, and depression. **************** This is an important one to discuss with the physician. Lewy Body Dementia Symptoms: The symptoms vary from person and person, and can mimic other diseases, especially in the early years. A diagnosis of probable Lewy body dementia requires progressive cognitive decline plus two of the following: fluctuation of cognition and alertness, recurrent visual hallucinations or Parkinsonian symptoms, such as muscle stiffness and rigidity, frozen stance, balance difficulties and tremors. Summary: Lewy body dementia (LBD), a progressive brain disease, is the second leading cause of degenerative dementia in the elderly. Although symptoms vary, hallucinations and fluctuating cognition are usually present, along with other features of Alzheimer’s disease, Parkinson’s disease or both. Causes: In the early 1900s, the scientist Friederich H. Lewy discovered abnormal protein deposits that disrupt the brain’s normal functioning. These Lewy body proteins are found in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinsonian symptoms. In Lewy body dementia, these abnormal proteins are diffuse throughout other areas of the brain, including the cerebral cortex, causing disruption of perception, thinking and behavior. Advanced age is considered to be the greatest risk factor, although some cases have been reported much earlier. Having a family member with Lewy body dementia may increase a person’s risk. Symptoms: The symptoms vary from person and person, and can mimic other diseases, especially in the early years. A diagnosis of probable Lewy body dementia requires progressive cognitive decline plus two of the following: fluctuation of cognition and alertness, recurrent visual hallucinations or Parkinsonian symptoms, such as muscle stiffness and rigidity, frozen stance, balance difficulties and tremors. Treatment: There is no cure or definitive treatment for Lewy body dementia. Medical management is complex because of increased sensitivity to many drugs. Clinically proven medications are cholinesterase inhibitors (medications for Alzheimer’s disease) and drugs for Parkinsonian symptoms. However, some medications prescribed for Alzheimer’s disease and Parkinson’s disease can adversely affect people with Lewy body dementia. All prescription and over-the-counter drugs should be initiated at the lowest effective dose and managed by a Lewy body dementia-experienced physician. ************** My heart/prayers go out to all caregivers out there, whether it be to their spouse with senile dementia, Alzheimers, etc. or those caring for a parent or sibling. Very difficult job, to say the least. Most will attempt to care for them at home for as long as they can, before putting the loved one in a care facility. I now wish I had kept her home a few years longer with the assistance of a home health aide (as I was having difficulty showering her, etc. after Mom could no longer safely get into & out of the bathtub. She was afraid of the shower stall.) Otherwise, she was content to be with us & still very conversational, knew who we were, etc. and attended a senior daycare which was excellent from morning to about 3 p.m. Once in the skilled nursing place, although wonderful care was given, I know now that chemical restraints were used.......although at the time it didn't dawn on me. The research physician also kept calling me, wanting to put her on experimental drugs, but knowing her adverse reaction to Aricept (severe dizziness & anorexia while in community care home), I reneged on that idea. |
It's quite a life lesson
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Well, from personal experience, as well as that of my peers, many of whom were going through the exact same thing with their own parent or parents (and many times with their inlaw parents at the same time....) I can say that yes we all experienced that ferocious anger when pressed for an answer or opinion......"as if it hurt to think" or else they were quite aware they were CONFUSED with no answer forthcoming.........it came out in belligerence, anger, acting out in a hyper fashion, etc. We saw it all. In the end, all of our parents, inlaws, etc. ended up in the same skilled nursing facility in our town.......so we were able to compare notes re our parents. It's quite a life lesson. Now, once someone came into their lives to manage their every day issues such as writing out their bills, doing their errands for them, getting a cleaning lady, arranging meals for them.......or inviting them to live in their own homes (as we did) the personality relaxed as they NO LONGER HAD TO THINK FOR THEMSELVES. This is that tricky early stage.......although no doubt it was going on for years prior. However, we've seen a nice normal person, active in the community, physically fit, etc........turn belligerent when pressed for answers.......then become docile as a lamb, sweet natured when they no longer had to THINK for themselves...........as that part of their brain was no doubt suffering. Later in my mom's purses, I found little notes whereby earlier on she must have written down her NAME, her STREET ADDRESS, my contact information, as well as her phone number. All on separate little papers. We assumed to remind herself. She knew she was forgetful. She also forgot to eat, when on her own & lost so much weight she was only 85-89 pounds at four feet eleven inches when we got her fulltime. I fattened her up to 125 lbs. on three meals a day........a bit later when the doc put her on Aricept, she lost it all& went back to the 89 lbs. Anorexia is one of the side effects, plus dizziness. Later when she was "SPOON FED" by the aides at the skilled nursing facility she went back to the 125 lbs. This was all a process from 1994 to 2003. It happened over time. This is why it is called THE LONG GOODBYE. Strangest thing is, I have no fear at all of getting it myself. My mom was always slightly "scattered" and even when I was a child she was always losing her keys, forgetting where she put insurance papers. I'm pretty organized with no memory issues, thank God. |
People often think in terms of dementia being one type or another but 2 or 3 types can exist at the same time in one individual. For example, it's very common for a person to have vascular dementia and Alzheimer's at the same time. Parkinson's disease is a form of dementia and I see no reason why it couldn't exist along with the others.
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Vascular Dementia on death certificate
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Actually, on my mom's death certificate it says "vascular dementia" as cause of death, although every one of her physicians referred to her condition as Alzheimers Disease, when speaking to me. Again, without an autopsy, it cannot be determined one way or another. She passed at 91. p.s. For the record, she never had a stroke; perhaps they were mini strokes, undiagnosed, if she did have any. |
My mother was diagnosed with Dementia. We did an autopsy after her death and her brain indicated no signs of the disease.
She was diagnosed with Porphyria in 1957. Many diseases mimic other diseases. |
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Well thank you kindly but I hope I'm not going too soon
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Well, thank you kindly, but I hope I'm not going too soon??? When is that reservation??? Caring for an elder does age one fast, but if I had it to do all over again, I would do exactly the same, however......this time around I would skip* the time in the community care home (keeping her in our home longer than the six years) & just do the "end" stage in the skilled nursing home Alzheimers wing which was necessary because she became wheelchair bound. We have three levels in this home plus hilly lawns & terrain outdoors. *I would get a home health aide into the home for the bathing. The nurses, plus aides who fed & bathed Mom, were true angels of mercy.....I'll also never forget after she had passed, they wanted me to be in the room as they bathed her body one last time. Her skin was pure white & pinkish like a little baby. They truly took excellent care of her those last 18 months. It showed. In our nursing home, only the gals who "requested" to work with the A.D. patients, were trained to do so. One hears so many horror stories of putting a parent into a nursing home.....but living in a small town, where everyone knows each other, plus knows the doctors as neighbors, plus knows the nurses, etc., it's totally different. Plus, all of our friends & neighbors were going through the same thing as we were, in our 50's. I miss her, every day. Only a mother's love (for her child, no matter what their age) is "unconditional". Once we lose our mother, that's it. Luckily I have a super great hubby. She loved him too. Just thinking, my mom moved NORTH to a cold climate & thrived until those latter years, passing at 91. We all have to go from something. My children always loved stopping at "Grandma's home" enroute home from school.........just food for thought. |
You are correct that many diseases mimic others
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http://en.wikipedia.org/w/index.php?title=Porphyria Very long; please keep scrolling downward http://www.mayoclinic.org/diseases-conditions/porphyria/basics/symptoms/CON-20028849 Dementia, though, can be a part of various illnesses. See below. Definition of dementia Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness. Dementia is a group of symptoms caused by gradual death of brain cells. The loss of cognitive abilities that occurs with dementia leads to impairments in memory, reasoning, planning, and behavior. While the overwhelming number of people with dementia are elderly, dementia is not an inevitable part of aging; instead, dementia is caused by specific brain diseases. Alzheimer's disease (AD) is the most common cause, followed by vascular or multi-infarct dementia. Causes and symptoms Dementia usually is caused by degeneration in the cerebral cortex, the part of the brain responsible for thoughts, memories, actions, and personality. Death of brain cells in this region leads to the cognitive impairment that characterizes dementia. The most common cause of dementia is AD, accounting for one-half to three-fourths of all cases. The brain of a person with AD becomes clogged with two abnormal structures called neurofibrillary tangles and senile plaques. Neurofibrillary tangles are twisted masses of protein fibers inside nerve cells (neurons). Senile plaques are composed of parts of neurons surrounding a group of proteins called beta-amyloid deposits. Why these structures develop is unknown. Current research indicates possible roles for inflammation, blood flow restriction, and molecular fragments known as free radicals. Several genes have been associated with higher incidences of AD, although the exact role of these genes still is unclear. Discovered by researchers at Duke University in the early 1990s, potentially the most important genetic link to AD is on chromosome 19. A gene on this chromosome, called APOE (apolipoprotein E), codes for a protein involved in transporting lipids (fats) into neurons. Certain variations of this gene appear to increase the chance for developing AD and/or lower the age at which symptoms occur. Researchers believe that as many as seven other AD risk-factor genes exist. In 2007, scientists identified a possible risk factor in four new AD-related regions in the human genome. In these regions, one out of several hundred genes may be a risk factor. One gene called SORL 1 has drawn particular research attention. This gene is involved regulating the transport of certain proteins in the cell. As of 2009, the role SORL 1 in the development of AD remained under study. Vascular dementia is estimated to cause from 5-30% of all dementias. It occurs from decrease in blood flow to the brain, most commonly due to a series of small strokes (multi-infarct dementia). Other cerebrovascular causes include vasculitis from syphilis, Lyme disease, or systemic lupus erythematosus (SLE); subdural hematoma; and subarachnoid hemorrhage. Because of the usually sudden nature of its cause, the symptoms of vascular dementia tend to begin more abruptly than those of Alzheimer's dementia. Symptoms may progress stepwise with the occurrence of new strokes. Unlike AD, the incidence of vascular dementia is lower after age 75. Other conditions that may cause dementia include:
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Having lived through it, been involved with both organizations, I will simply say, we will agree to disagree.
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Nothing to disagree about
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You lived through it with your mom. I believe you. Yes, many diseases mimic each other. What I meant was that Alzheimers & Porphyria are two distinctly different things, however, anyone can have dementia..... My mom, nor any of her elderly friends in the Alzheimer wing, had porphyria. Thankfully not. However, I had two younger friends, one with systemic lupus and the other with discoid lupus, both with a photosensitivity to the sunlight.......who had the cutaneous type of porphyria (on their face and hands} One had psychotic events which might today be "labeled" as DEMENTIA, BUT BACK THEN WAS ATTRIBUTED TO THE DRUGS such as chloroquine (sp?), prednisone, plaquinil, etc. They didn't live long enough to grow old. It was called "psychotic events" at the time.....not dementia. YOUR POST: ""My mother was diagnosed with Dementia. We did an autopsy after her death and her brain indicated no signs of the disease."" ""She was diagnosed with Porphyria in 1957. Many diseases mimic other diseases. "" ************************************************** *************** http://www.dermnet.com/images/Porphyrias/photos/1 Photos of Porphyria on above hyperlink......several pages worth. ************************************************** ************** Porphyria symptoms Porphyrias involve three major symptoms:Abdominal pain or cramping (only in some forms of the disease) · Light sensitivity causing rashes, blistering, and scarring of the skin (photodermatitis) · Problems with the nervous system and muscles (seizures, mental disturbances, nerve damage). ... http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002188/ ************************************************** ***************** Porphyria Porphyrias are a group of rare disorders passed down through families, in which an important part of hemoglobin, called heme, is not made properly. Heme is also found in myoglobin, a protein found in certain muscles. Also known as: Acute intermittent porphyria · Congenital erythropoietic porphyria · Erythropoietic protoporphyria · Hereditary coproporphyria The acute, or hepatic, porphyrias primarily affect the nervous system, resulting in abdominal pain, vomiting, acute neuropathy, muscle weakness, seizures and mental disturbances, including hallucinations, depression, anxiety and paranoia. Cardiac arrhythmias and tachycardia (high heart rate) may develop as the autonomic nervous system is affected. Pain can be severe and can, in some cases, be both acute and chronic in nature. Constipation is frequently present, as the nervous system of the gut is affected, but diarrhea can also occur. Given the many presentations and the relatively low occurrence of porphyria, the patient may initially be suspected to have other, unrelated conditions. For instance, the polyneuropathy of acute porphyria may be mistaken for Guillain-Barré syndrome, and porphyria testing is commonly recommended in those situations.[5] Systemic lupus erythematosus features photosensitivity and pain attacks and shares various other symptoms with porphyria.[6] Not all porphyrias are genetic, and patients with liver disease who develop porphyria as a result of liver dysfunction may exhibit other signs of their condition, such as jaundice. Patients with acute porphyria (AIP, HCP, VP) are at increased risk over their life for hepatocellular carcinoma (primary liver cancer) and may require monitoring. Other typical risk factors for liver cancer need not be present. The cutaneous, or erythropoietic, porphyrias primarily affect the skin, causing photosensitivity (photodermatitis), blisters, necrosis of the skin and gums, itching, and swelling, and increased hair growth on areas such as the forehead. Often there is no abdominal pain, distinguishing it from other porphyrias. In some forms of porphyria, accumulated heme precursors excreted in the urine may cause various changes in color, after exposure to sunlight, to a dark reddish or dark brown color. Even a purple hue or red urine may be seen. |
I will pass your information to the Porphyria Specialist in Texas, the physician that diagnosed my mother for the Dementia, and also the out of state pathologist that has expertise in both Porphyria and Dementia. She was "shipped" out of state for medical research when the autopsy was completed. Possibly, none of the experts in the fields were able to copy and paste your information.
My ongoing discussion with this topic will now come to a close. We will agree to disagree. |
One of us is obviously misunderstanding something or other
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I never meant to insinuate your mom did not have dementia or porphyria. You said it did not show up at autopsy. Alzheimers does show up at autopsy. I also listed all of the myriad of diseases that include dementia as one of the symptoms. Nuff said. I'm sorry for the loss of your parent. |
Some persons enjoy posting opinions on subjects about which they have little actual knowledge. Other persons enjoy reading such opinions, perhaps deriving some sense of reassurance if the posted opinions coincide with their own preconceived ideas. But when this fact is pointed out to them (as by BarryRX), then both types get all defensive.
I'm willing to grant that such posts are generally made with the best of intentions, with a sense of sharing, or just an attempt to be helpful. Then again such behavior in and of itself could be an early sign of dementia or of some other mental disorder. When it comes to Alzheimer's, one size most definitely does not fit all. The pre mortem diagnosis of Alzheimer's disease is subjective, not objective. The symptoms are also subjective. Very few patients diagnosed with this dreadful disease have had a brain biopsy. There are no other confirmatory tests. Thus errors in diagnosis are commonplace, even by well trained professionals. |
She was diagnosed with Dementia and her brain showed no signs of having the disease. She was also diagnosed with pancreatic cancer due to shading on an X-ray and her symptoms. Again, not found during an extensive autopsy. She was treated for both and had neither.
My mother passed away in 2010. The findings of her autopsy, her extensive journals, and a wonderful medical community that dealt with her diseases "with the knowledge they had at the time" will help not just my blood line, but hopefully many people. As she always said, it can't end with her and through her sacrifices, and our persistence it won't. The Internet is a wonderful source of information, but can only cover a small percentage of knowledge available. |
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