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After prescribing Exelon patch in 2009, my neurologist told me that I did not have to see him again, that my PCP could prescribe for me. But the PCP refused. So my neurologist agreed to see me once a year for medication refill.
At my last visit, in June, the neurologist suggested that I repeat my MRI. My previous MRIs in 2003 and 2008 showed non-specific white matter hyperintensities. I expected the same report. This time my report read brain atrophy. The white matter hyperintensities are unchanged.
I am scheduled to undertake a computerized cognitive test called Neurotrax.
The neurologist listed 2 diagnoses on my form. The first one was minimal cognitive impairment. Previously, he had diagnosed me as cognitive impairment not otherwise specified. So this makes it appear as if I am not much impaired, which is not the case.
Also, he added the term leukoaraiosis, which refers to the white matter hyperintensities in the brain MRI. Apparently, these are now recognized as indicative of small blood vessel disease and micro-strokes.
If I had stayed with the PCP, I would not have had a repeat MRI nor would I have learned about the leukoaraiosis. For me, it is better to have remained with the neurologist.
I continue on Exelon patch 9.5 mg. I asked for Namenda 28 mg XR because the generic memantine cost me more than the prescription Namenda 10 mg tabs twice a day.
Overall, I can feel some progression. My long term memory is worsening. My short term memory loss appears to be unchanged.
I will meet with the neurologist again in October and discuss the findings. I will update you when I know more.
Iris L.
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Joined: 11/30/2011
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I am very interested in hearing more
about who your visit goes using Neurotrax. While I do not know anything about
it I do believe that one day these electronic and computer testing will be
better and more accurate for us. It will take the human factor out of it. There
is so much more to learn that we do not take advantage of. It also leaves some error as we change over.
One needs to have a good base line for comparison.
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Good for you for advocating for yourself. Not sure about the computer test, sounds like you need a more comprehensive neuropsych test. The reason I say that is that some things they score are subjective...like it was added in my report about how just because I couldn't answer some of the test questions, that I had other resources in that area that were not covered in the test. That is very interesting about the white matter. I had MRIs long ago too, and they showed the white matter sensitivities too. I wonder if that explains the small, pin prick like head aches that only last a few seconds I get every now and then? Anyways, this is all good stuff to know. How are you doing after the visit?
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Iris - what struck me in your post was that your neurologist was so HELPFUL. Many are not for various reasons. When we are on our own it is pretty darn hard to search out better care, or even know what is good! Glad you are still in good shape. Seems I have taken a slip downhill, but am working on improving my life, making things less tense for me, even if temporarily. I am not wanting a record of my decline. I want a record of finding myself laughing again. Love you so much. Thank you for coming back again.
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TSSR: the brain cannot sense injury to itself (i.e. feel pain). It can perceive pain from other body parts, but not from brain tissue itself.
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Michael, I have always believed that there needs to be a way of monitoring our cognitive status without undergoing a major 6 hour neurocognitive evaluation. That may be possible for those patients who are in clinical trials, but that is not feasible for the average patient.
Sun, my last major comprehensive neurocognitive evaluation by a neuropsychologist was in 2012. I will not submit to that again unless there is a major change.
As far as the pin prick sensations, they may be from the surrounding muscles of the skull. The brain tissue itself has no pain receptors. That is why patients can have brain surgery while awake, with local analgesia to the skin and muscles.
Alz+, in my case, I do not have a specific diagnosis, so it is reasonable to seek periodic objective documentation of my cognitive status by doing those tests, to see what direction I am going in. My dx is cognitive impairment nos. Now he says minimal cognitive impairment, which obviously is not true, because my cognitive impairment is much more than minimal.
I am wholeheartedly in favor of objective neurocognitive testing. At my first visit in September 2008, this same neurologist listed my diagnosis as "subjective memory complaints." It was only after the neurocognitive testing by the neuropsychologist that he believed there was truly something wrong. Otherwise, I would have been dismissed from his office and would never have received any treatment.
I was in a bad state in those days, because I had been complaining of worsening of memory and functioning for over a year, but no doctor would take me seriously.
This only goes to show how I still have to take things with a grain of salt, even with an excellent dementia specialist. Things are not clear-cut with me. I must still advocate for myself. Fortunately, I have my board-mates and the internet to help!
Iris L.
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The_Sun_Still_Rises wrote:Mine was Major Neurocognitive Disorder probably due to medical reasons (subject to being ruled out). I have come to understand that if medical reasons are ruled out that it puts me in the Alz class. Yes, it's basically true, that if medical causes of dementia are ruled out, the diagnosis is likely to be Alzheimer's Disease or one of the other dementias. Nevertheless, the trend is towards earlier diagnosis. Ours is the first generation that is diagnosed early enough for Best Practices to make a difference. Most patients are diagnosed in the later stages, when there is limited chance for improvement or stabilization. This is why I call us Dementia Pioneers. No other generation has treated dementia aggressively. I have had significant memory loss and cognitive impairment for about 28 years. I have several medical illness that might contribute to memory loss. After I learned about Best Practices, I can say that my memory, cognition and overall function have signifcantly improved between 2007 and now. Don't give up hope. People here are interested in taking an active role in their treatment. Have you visited the Clinical Trials board yet? There is good information there, too.
I have had past MRI's and so I know that I don't have a tumor or anything. Not sure my insurance would pay for a PET scan, but I would be very interested. My insurance did not pay for a PET scan, but I agreed to be a control patient for a brain cancer study, which enabled me to receive a PET scan without charge. The result was unremarkable. As to monitoring your cognitive status, there is a very good piece of advice from Teepa Snow...and that is to record yourself on your phone doing the Animal Fluency test. You do this by having someone time 30 seconds and you record yourself naming all the different animals you can think of. She said to do this every 6 months. The reason she says, is because if there is a major decline...doctors don't know, because they only see you right then...but with the video (which she says to carry like a med list), you can show that you were like this ___ months ago. Teepa says, and I have heard this other places too...that the number you get should NOT change over time. Unless you have dementia. There is no loss in this test in normal aging. I think, over 65 should score 12+ and under 65 should score 18+...mine was 5, although I still remember my 5 (which I hope counts for something). My concern with this test is that it is a single test. It may be good for screening, but it is not comprehensive in measuring different aspects of our cognition. Mimi always says we should receive a report of our strengths and our weaknesses. This test would tell me how well I am at naming animals, but not other areas of cognition. Nor would it tell how I am functioning at home in my daily activities, such as an evaluation of instrumental ADLs would. The screening tests indicate whether a thorough evaluation should be performed. The animal fluency test is part of the MMSE. But I have no objection to including it in the history.
I keep my emergency medical information on my phone so in case of emergencies it is there...I also keep pictures of my health directive, just in case. To the others, yeah...I guess you wouldn't get little headaches with tiny strokes...what was i thinking?! Hope that helps.
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Sun, I see that your dx is Major Neurocognitive Disorder, which is a general term. From what I understand, you have not been diagnosed as having alzheimer's disease.
You stated you have medical issues. I have systemic lupus and memory loss and cognitive impairment is associated with lupus. Also, my rheumatologist believes my cognitive impairments are due to anti-phospholipid syndrome, an autoimmune condition that causes mini-clots and that can mimic multiple sclerosis. I also have Hashimoto's hypothyroidism and hypertension and sleep apnea. All of these are risk factors.
Medications can cause cognitive decline. Check out the Beers list and see if any of your medications are on it.
Major depression can mimic dementia. This is why is it vital to have a thorough evaluation by doctors who are experienced in diagnosing the dementias and who are able to rule out other factors and diseases.
I don't recall if you had a history of cancer treatment. Chemotherapy and brain radiation can cause impairment.
Resources are available to patients of all ages. It just takes effort to find them. I was referred by a Care Consultant at the Alzheimer's Association to a local social worker who works with seniors. But in her company, there were other social workers who worked with adult disabled. Your local chapter of the AA should be able to assist you in locating resources. Try to be specific to them about what you are seeking.
Iris L.
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Good luck with the Neurotax, Iris. I've never heard of it before. I just went through another neuro psych eval (6 mos follow up) and they want another in a year. I often wonder if computerized testing is more accurate vs the usual 6-hour exam?
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Sun,
I am sorry to hear you can't get the services you need. Are there not disability specific services you may be entitled to? Don't give up there may be something overlooked or some information given here on the board to lead you to the right resource.
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llee08032 wrote:Sun,
I am sorry to hear you can't get the services you need. Are there not disability specific services you may be entitled to? Don't give up there may be something overlooked or some information given here on the board to lead you to the right resource." --------------------------------------------- Hi llee08032,
I mean doctors. When they don't just do their job. When they view your case as too complicated. When they cannot just say, "I don't know."
Some people get mad, others are just in a way that the doctors don't take advantage...me, I seem to roll the dice poorly...and it often feel like the doors are shut to me to get the care I need. At least that was the last 6 years.
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Sun, I do not think it is good for you to think of yourself as having a dying brain. You have a good mind, you write well and can communicate your thoughts, and you are taking care of yourself and your family as part of the sandwich generation. One of the aspects that can help us is to keep a positive mental attitude. We can be realistic, but it will hurt us to dwell on dying.
I have been on Exelon patch and Namenda for as long as you have been symptomatic. I am doing better than I was in 2009. I believe in treatment. Treatment can help prolong the early stages. This is what I want.
When I was diagnosed as having systemic lupus, I was told it is incurable. But treatment for lupus has changed my life. I was bedridden, now I travel internationally. No one knows the future. If we give up, we will surely die. I am not giving up.
Alan in Colorado, one of our emeritus members, gave me this poem when I first joined the board and pondered my future. It helped me make the decision to FIGHT for my life.
Do not go gentle into that good nightDylan Thomas, 1914 - 1953Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
From The Poems of Dylan Thomas, published by New Directions. Copyright © 1952, 1953 Dylan Thomas. Copyright © 1937, 1945, 1955, 1962, 1966, 1967 the Trustees for the Copyrights of Dylan Thomas. Copyright © 1938, 1939, 1943, 1946, 1971 New Directions Publishing Corp. Used with permission
http://www.poets.org/poetsorg/poem/do-not-go-gentle-good-night
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Oh, Iris, that poem always makes me tear up since I watched my own father weaken from a failing heart. I don't begrudge him his peaceful death, and only now do I see he was raging in his own way. He'd been to the library once to bring home five books of poetry, and to the grocery store twice, where he bought his preductable delicacies. Then he went upstairs to watch Jeopardy and passed in his sleep.
That's how we should do it -- live until we due. We shouldn't fret about what we can no longer do. We should take joy in those things we still have.
And then I remember Rodney Dangerfield reciting it for his final exam in English Literature 101. "But what does it mean , Rodney?" "It means I'm gonna pass!"
Sun, I hope this doesn't come amiss, but doesn't the onset of your symptoms coincide with the beginning of your caretaking of your mother? Along with other physical conditions you have, that is more stress than people usually have to handle. Are your doctors aware of the phenomenon of care-giver dementia? Sorry to use that term, but it's a real thing, and could be a factor. 165 to 85 is significant, but I'm afraid to take an IQ test myself, because I feel like there are a thousand frantic gerbils running their wheels inside my head. Have I done this? Have I done that? Have I paid the bill that's due on the fifteenth? Oh, god, I forgot about the dentist!
I thank heaven for my smartphone and an app that keeps all kinds of lists for me.
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Many people worry about AD after experiencing common memory lapses. But a patient must experience another sign in addition to memory loss to denote dementia. I found this which explains the signs of dementia:
Seven A’s of dementia One way of understanding how dementia affects the brain is to look at the seven A’s of dementia. Each A represents damage to a particular part of the brain. Please keep in mind that someone with dementia may not experience all of the A’s. Anosognosia means that you can no longer recognize that something has changed and that there is something wrong. You might not understand why you have cognitive problems or that you are experiencing any problems at all. Because the part of your brain that helps you reason is damaged, you do not see the changes in your abilities that others may see. Agnosia means you can no longer recognize things through your senses: sight, sound, taste, touch, and smell. You might not be able to sort out what you see or hear. You might have trouble recognizing familiar people. Your safety may be at risk if this part of the brain is affected because you might confuse objects and what they are used for. Aphasia means you lose the ability to use language. This includes the ability to speak, understand, read and write. Although a person may retain the ability to speak for some time, the ability to understand what other people are saying may be affected early in the disease. If you cannot understand what is being said to you, this can lead to misunderstandings between you and those around you. You might find yourself withdrawing from social interactions because you are worried that you will not understand others or that they may not understand you. Apraxia means you have lost the ability to tell your body how to carry out purposeful movement. As well, if you have apraxia, you may also have trouble understanding terms such as back, front, up, down. When this happens, it becomes difficult to do things such as tying shoelaces, doing up buttons and zippers, and any activity involving co-ordination. The ability to move your body according to a certain pattern, such as co-ordinating hand and leg movement, also affects your ability to do specific activities such as driving. Altered perception happens when you misinterpret the information your senses are giving you. For some people, this is a bigger problem in the late afternoon or early evening when light changes. Another important change is the loss of depth perception—the ability to see in three dimensions. It becomes harder to judge how high, deep, long, wide, near or far things are. For example, if the floor and furniture are the same colour, it may be difficult to judge when one is close enough to a chair to try to sit. Amnesia means loss of memory. This is an important loss because most things we do depend on our ability to remember. For example, a person with short-term memory problems loses the ability to remember what was just said. This explains why you might find yourself asking questions over and over again. Earlier in the disease a person’s short-term memory will be affected. As the disease progresses, long-term memories will become harder to retrieve. Apathy is not being able to take initiative. The part of the brain that helps you start to do something, either to carry out an activity or to communicate, is damaged. You might find that you have difficulty beginning activities. You may need someone else to give you cues (hints) to keep you involved in a conversation or a task.
http://caregivingwithpurpose.com/7531/dementia-info/alzheimers-symptoms-what-are-the-7-as-of-dementia/
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Iris, Thanks for sharing. I had forgotten about the A's.
Take care. Peace and Hope, Lisa
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Some thoughts. What a nice thread!
Neuro-psych Tests in my area are pretty much completely computer based. I worried about the negative bias on those unfamiliar with computers. I did listen to your promo and it sounds like help is given as necessary.
The test Iris is to be given is designed for stroke victims. And it is not as comprehensive as the usual neuro. Not as many areas are tested. Are they some of the same as the neuro? Who knows.
Iris, when I saw my neurologist after the last test I took I was commenting that that fluency test result was poor. The one where you name all the animals beginning with a certain letters, And I can only name a few. Now I , in a sense, cheat. If the letter is b...after I name the few I can come up with, I start going through the alphabet: ba...., be.... bi, etc. I get a few more that way.
My neurologist seemed completely unconcerned. His question to me: Now when was the last time in normal every day living do you have to come up with that answer.
So, he seems more interested in; am I still writing and researching? Still living by myself? How am I doing?
Iris, I'm so happy you are feeling better.
From something I read recently a lot of us have had more mini strokes than we were aware of.
And as I wrote somewhere else, probably very few us have a straight diagnosis of, for example AD. We have a bit of this and a bit of that, which to me makes sense.
And yes, Iris, we are pioneers. But still far too few of us are diagnosed early. If i could have only one goal, it would be for universal early diagnosis combined with much more emphasis to get those diagnosed motivated to be proactive in their own treatment. It works
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Mimi S. wrote:And I can only name a few. Now I , in a sense, cheat. If the letter is b...after I name the few I can come up with, I start going through the alphabet: ba...., be.... bi, etc. I get a few more that way.
Mimi, it does not matter how you recall the animals--this is not cheating--this is showing that your cognition is still functional enough to figure out how to respond. Is this not what life is all about? Meaning, figuring out how to respond to what confronts us?
I have the Neurotrax test tomorrow. I will let everyone know how it goes.
Yes, we do need earlier diagnosis and for patients to be pro-active in their care. I am so glad that you introduced us to Best Practices years ago.
Iris L.
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Joined: 12/15/2011
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I had my Neurotrax appointment this morning. Basically, I believe it was a waste of time. It did not tell me anything more than I already know, that I have a cognitive impairment.
It is more of a screening test than a definitive neurocognitive test. I wonder how much I will be charged for this test?
Iris L.
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Joined: 5/10/2015
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Hi folks,
Speaking of tests a person can do at home, how about the clock-drawing test? I have seen some pictures of that test done by people with Alzheimer's that did not turn out so well. At the present time, I am still able to draw a clock face.
I also recently heard about the SAGE test, which seems to be like a mini neuropsych test.
TaTa, AnDi
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Joined: 12/15/2011
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The SAGE test, the Self-Administered Gerocognitive Exam, is a screening test to be done at home and brought to your PCP. If abnormal, then the PCP can proceed with further evaluation. Once a person has been determined after the 6 hour neurocognitive testing definitely to have cognitive impairment or dementia, there is no point in screening tests.
A screening test says, "is there something wrong?"
A definitive test says, "yes, there is something wrong!"
Iris L.
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Joined: 5/20/2014
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Iris,
Sorry to hear you were disappointed with the neurotax test! It stinks when we think we will learn something more from another test and walk out not knowing anything new! I felt that way last week at neuro opthalmologist testing which I think basically confirmed severe impairment test scores with visual memory or visual processing is related to brain and not eye's! It was frustrating having to explain my accommodations for when I perceive that cars in the opposite lane are flying toward me. That at this point and time I realize it is a visual perceptual issue and not really happening. Thus I keep myself calm, make sure I am steady in my lane,do not make any sudden moves, use self talk to calm myself, and look to the right bottom of the road similar to how you should look if headlights are glaring and your having problems seeing. If anything new was discovered they did not tell me about it and said they would send report to neurologist. In the meantime I wonder/worry PCA? Or worse yet CBD (which is really progressive)!
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llee08032 wrote: I perceive that cars in the opposite lane are flying toward me.
Ilee, now that you mention this, I am reminded that I had the exact same experience years ago, ~1986 and 1987, when I first began having difficulties. When I went around a curve, it seemed the the cars in the opposite lane were flying directly towards me! I knew this was a perception issue, and not a visual issue. Nevertheless, it kept me away from highway driving for a long time.
I believe something metabolic was happening to my brain for quite some time, because I had such odd symptoms for a long time. But the symptoms eventually eased up, after I began treatment for systemic lupus. The symptoms never disappeared completely, though.
Now I have recurrence of the brain symptoms, but without the other lupus symptoms. This is why my doctor has me diagnosed as "not otherwise specified." It does not really make a lot of difference. It just means that I am a bit unconventional in my disease, as I have always been in my life. 
Iris L.
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Joined: 12/15/2011
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llee08032 wrote:
I perceive that cars in the opposite lane are flying toward me.
I had the same sensation in the early years. I had to temporarily stop highway driving. I do not have this sensation now.
I do not believe that doctors are sufficiently aware of this.
Iris L.
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Joined: 11/27/2014
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Iris, was the neurotrax as involved as a neuropsych testing. They gave you the results same day.
I have my annual neuropsych the 1st of October, to see where I am at at 1 year after diagnosis.
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Llee - cars flying at me - I have exact same experience. It is because I lost peripheral vision, have tunnel vision, accidentally discovered because of double vision 4 years later. I esp panicked by this a front seat passenger - slightly different when driving but it did get to point driving was too scary. Passenger seat was worse. No one knew to tell me to ride in back seat. That idea, to try riding in back seat ended it immediately. Doctors would have medicated my bad behavior. ************* using my "BELIEVE US - FOR A CHANGE" motto I learned that people are NOT repeating a phrase because they "forgot" they just said it. It is a comforting means, a mantra. Often, hidden in the mantra is a request in poetic form, and once some one responds to that cipher the person may stop repeating the question or phrase. I.e. "When are we leaving?" is repeated. Person replies, "In an hour." over and over, or explains "Not for weeks" gets irritated, repetition escalates. Listen to heart of question and respond, "We are going to be together forever and ever," and hugs and smiles. When person relaxes and stops repeating, you have the answer. I can not think up more examples right now but a lot of "markers" that mean some thing to medical observers are seen as ABERENT BEVAIORS - But if you just believe in the emotional content of the behavior or words you find the person is communicating a direct clear message. The medical view of Alzheimer changes is all negatively based. The are focus on decline, loss, oblivion. ********************* The Clock test. I can draw a clock now. It shows my clock drawing ability remains. I suppose if someone can not draw a clock it could show a specific part of brain function area, but ... least of my concerns. ********************* There is an idea that high IQ people express dementia differently (better) and have an awareness of their losses "regular" folks don't. Not true. The elderly Indian neurologist (who loved working with dementia patients for 50 years) who I saw for final diagnosis said it is more "the ability to compensate that masks brain changes". He used my testing in office to show me THE POSITIVE part of me, how well I compensated for losses I did not know I had. People with high IQs do not necessarily compensate for losses well and can be just as oblivious an anyone. ************* Challenge every list of behaviors and losses! Imagine the changes serve a purpose. Stop taking as gospel truth anything someone who has not lived with dementia says about it. This stuff is all based on guessing. If we tell them differently, do they listen? More important to me than Best Practices. I follow the Mexican diet when ever possible and enjoy it. I cannot exercise and am learning what it feels like to relax. I cannot take regular medications and am grateful I have cannabis, Chaga, aromatherapy, trees, and my animal companion. One other thing, if a person does not understand the language of Alzheimer's look at the dog. Do what the dog is doing. The animals understand without making us express it in particular words. ************ love and courage to every one * Mexican diet, rice, beans, avocado, salsa, lettuce, tortilla. Not a mistake in Mediterranean. I understand more fruits and veggies, but to ask some one who change their diet can feel like too much pressure. Put out some apple slices, orange slices, melon, bowl of grapes, nuts. Cut portions of meat and sweets. Have juice. Find a salad dressing you like and eating salads is better. I was vegetarian and want to be again. The rules sometimes seem oppressive, rigorous and unpleasant. bend rules to suit your happiness. The chemicals produced by enjoying something fully more valuable than a vitamin or bit of fiber. You run your own life, what makes you relax is your right to do. Question everything, follow your gut and heart. That is my humble opinion offered with love and affection.
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GwenD wrote:Iris, was the neurotrax as involved as a neuropsych testing. They gave you the results same day.
Gwen, the Neurotrax was NOT as involved as neurocognitive testing. I was disappointed.
I have to wait until October for my next visit for the results. It's okay, because I am not impressed with the test anyway.
Before your appointment on October 1, write down what changes you have noticed to give to your neurologist. Ask how she will monitor your progress.
Iris L.
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alz+ wrote:
Challenge every list of behaviors and losses! Imagine the changes serve a purpose. Stop taking as gospel truth anything someone who has not lived with dementia says about it. This stuff is all based on guessing. If we tell them differently, do they listen?
* Mexican diet, rice, beans, avocado, salsa, lettuce, tortilla. Not a mistake in Mediterranean. I understand more fruits and veggies, but to ask some one who change their diet can feel like too much pressure. Put out some apple slices, orange slices, melon, bowl of grapes, nuts. Cut portions of meat and sweets. Have juice. Find a salad dressing you like and eating salads is better. I was vegetarian and want to be again. The rules sometimes seem oppressive, rigorous and unpleasant.
I agree. Much of what is said about dementia by professionals is GUESSING. Read here and learn from our peers.
I too thought, why should I change my diet and eat food of a completely different culture? Then I realized, it just means, eat more fruits and vegetables. Get my anti-oxidants from fruits and vegetables rather than from supplements. Eat more omega-3 fats and fewer omega-6 fats. I was already doing this as treatment for systemic lupus, and I was already reaping the positive results.
The point is, we CAN do something for ourselves. We are not empty vessels, who just sit around waiting for the hammer of life to strike us down.
We are Dementia Pioneers, taking steps for ourselves!
Right on, Alz+!
Iris L.
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