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My Mom had a brain stem stroke about 3 years ago. Since then she has slowly regressed. My dad is full time care taker and , as hard as I try, I don't get a lot of details. She complains about dizziness, all the time- she says she feels drunk all the time, has horrible balance issues - is in a wheel chair- lost much of her bladder control, cannot talk above a whisper but remembers everything! She just cannot talk very well. She also cannot read. The eye doctor said her eyes have not changed- so why can she not read? She had a neurology appointment Wed. and I told my dad to ask about vascular dementia but, as usual, this darn doctor was very non committal and vague(" it happens with strokes, yes,).dad said her brain scan has not changed, her muscle strength is Ok, blood pressure Ok, her weight is only 113-she is about 5'7"- so she needs to gain weight. Doctor said she should not regress much more if she does not have another stroke (she is on all the proper meds) BUT she is!!! I am 4 hours away and watch her periodically- she is coming to my house for a week in March- (I am going to get her and drive her home) Her doctor is 77 and just seems so -vague- so ho hum. I have no legal rights to her health care. I am so worried about her though. I just feel like there is more going on. BUT WHAT? Does anyone have any ideas? Thanks!

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I don't know if my Mom would know what eBay looks like-I don't think she has ever been on OR could see it but she is adamant he was on eBay. I wondered if he was just looking at files on line or something but she seemed determined. She told him off either way. Hee hee .
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I'm laughing at the eBay comment. Would your mother really recognize an eBay screen? All of my doctors and my husband's doctors frequently consult a computer screen during our visits. I wonder if Mom could have misinterpreted what she saw? Anyway, it is a funny story and if it makes Mom feel like she has some control, good for her!
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Wow-thanks vestifans for all the great ( though scary) info. I will look into it all. My Mom seems to be able to watch TV and see things OK but she cannot read very well-she says she cannot see the words and tries to use a magnifying glass. But the eye doctor said her eyes were ok other than her periphereal vision. But , like you said, it may be her brain not her eyes.

I think her dizziness is the brain stem stroke -see this is where I lost faith in her doctor. My Mom was going to him for an Alzheimer's diagnosis-she does have plaque on her brain but after 6 years she is not losing he memory like she should ( thank goodness) and the scans have not changed. So ,--- this is all kinda confusing, ---she goes to her dentist and tells him how she feels drunk all the time and HE says it sounds like you had a brain stem stroke. This is the first time anyone has said this. My Mom and Dad go back to the neurologist and ask him and , according to my Dad, he goes"oh yeah, you had a stroke on your brain stem". I asked my Dad if he ever mentioned this before and he said no. ???!!!??? Are my Dad and Mom not listening? Is this doctor crazy? I ask to go with them to the appointments but get the brush off. My Dad is proud and stubborn. My Mom tells me this doctor goes on EBay during her appointment. She just told me (this last weekend) that she told him to stop and he has ( this makes me laugh-good for her!)

So now her diagnosis is a brain stem stroke no Alzheimer's. Her memory tests are good. She doesn't have diabetes but she does have high blood pressure. She takes a lot of meds. She takes Ambien to sleep and she takes Requip for her RLS. And blood pressure meds and blood thinners. I hate the Ambien. I think it cannot be good for her. She was taking Namanda but is not now.

I will give her coconut oil when she is here.We use it now ourselves. But my Dad is so cheap it will be hard to get him to give it to her. It is just so out of the box for his kind of thinking.


Thanks again, jeannegibbs and vstefans! If anyone has any suggestions or thoughts please post. You never know when one word can lead down the right path. I know I am going to be looking up "cortical visual impairment"
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My mom had some of this too, with vascular dementia. She had a lot of blockages in the posterior circulation, and she had loss of function of the occipital and posterior parietal cortex that provides interpretation of visual stimuli before she had the brain stem problems as much. The specific medical term is "cortical visual impairment" and it can seem puzzling because the eyes are OK and the person will track visually but just can't interpret what they are seeing. My mom gave up reading, then TV and videotapes, and then didn't even want to look at pictures anymore. She didn't necessarily even realize she had trouble seeing, she would think she was seeing something (the mind kind of fills in the blanks in the absence of stimuli that make sense sometimes) and had other reasons for why she did not want to do those things any more. She had another funny way of coping with it - she wanted her view in her room less cluttered and would ask us to throw away a lot of things, sometimes really neat things that were special gifts, cards, or art work, but she just needed less to process visually so she could still make a little sense of it. I'm a pediatrician, and when kids have cortical vision problems we try to use simple, familiar, brightly colored and lighted things to stimulate their abilities and they often improve a great deal. Older adults may not do as well, and if they are ever totally cortically blind, they usuall do not recover much vision at all.

Despite the anticoagulation that could be done safely from a medical standpoint, which unfortunately was limited, my Mom was found to have extended some of her strokes and probably just lost microcirculation to other areas gradually as well. Overall, she got worse over time with both heart and brain function and eventually she died from those complications despite all the medications that helped for a while. I don't want to be a downer for you, so there are things that may help at least for a while: 1) have them check on platelet inhibition and adjust meds accordingly 2) make sure they don't lower her BP too much 3) if diabetic, get blood sugar under the best control that can be done safely 4) try some of the things like coconut and other MCT oils and mannose that may be usable by the brain more directly, and good nutrition in general, and 5) if there is a low vision consultant in your community, most will have the knowledge and able to help with this even though it is not due to the eyes.

The dizzy part could be due to the brain stem stroke itself - my mom would have a feeling of falling - fortunately no nausea. They could make sure it is not due to anything more treatable like vestibulitis (inner ear) and there are meds that can work but soem exercises may actually help more, but you have to take it slow and easy: http://www.strokenetwork.org/newsletter/reflect/balance.htm

This is hard and I can sure understand why Dad would want to believe the opposite of what was meant, but I hope you still have some pleasant times together to be enjoyed and remembered. You will have good days and bad, some days brains just work better than others - and that's true for most of us at any age!
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Thank you MishkaM. My special interest is dementia. There are a lot of good, insightful posters who post regularly here. I hope you will get additional comments.

Please keep us informed as this unfolds. We learn from each other!
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Hi jeannegibbs, I was just telling my husband -before I checked for responses to my post-how I thought this woman named jeannegibbs on this forum was such a nice woman and always gave such good advice! No kidding. And now here you are ! Thank-you. You bring up many good points. My sister and I often wonder about drug interaction and if my Mom would benefit from a hospital stay where she dried out-is that the right term?. But try and get my Dad to agree. *sigh.

I do think my Dad hears what he wants to hear. I think the doctor says -"yes, she may have vascular dementia"and my Dad hears " she may not have vascular dementia". Which in turn turns into "she does not have vascular dementia " I have asked to go to the appointment but get brushed off. Next one is in May. I am really going to try and go. (!!!)

Thanks, again, jeannegibbs , for your posts. I know you are dealing with the loss of your husband. ((((hugs))) I hope you get some answers fom his autopsy. How hard to wait for something like that. Wishing you warm wishes as well.
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It is possible that the doctor's "it happens with strokes, yes" was a way to tell your father, yes, this is what she has without saying directly to her "you have vascular dementia." Many elders really, really hate to hear the D word and the doctor might be sensitive to that. Possible. Obviously you and I don't know his motives!

Also the comment that she shouldn't regress unless she has another stroke seems to indicate he is blaming her current state on the stroke she had three years ago, which seems consistent with vascular dementia.

What did the doctor say about the dizziness and the feeling drunk? Could that be a drug side effect?

It is also possible that what you are hearing isn't an absolutely accurate version of what the doctor said. Maybe it is filtered through Dad's fears and needs. Possible? You know your dad.

I think it would be very helpful if you could talk to the doctor directly. He would need Mom's permission to talk to you about her. Do you think she would be willing to sign a HIPPA waiver form? Maybe you could call her clinic, ask them to mail to you the form they use, and you could discuss it with her while she visits. You could fax or mail it to the clinic and set up an appointment for a telephone consultation with her doctor. Be prepared with a list of questions. Ask about the diagnosis, but really the important things are her symptoms and what can be/is being done to relieve them. Why is she dizzy? What would help? What are the recommendations concerning weight gain? Etc.

If you are not satisfied after talking to her doctor, you could consider getting a second opinion, perhaps during her April visit. This should probably be discussed with your dad.

As you know, there is no cure for dementia -- any kind of dementia -- but managing the symptoms well can greatly improve the quality of life for the patient and the family. As you probably also know, it isn't possible to provide an exact and accurate diagnosis of the type of dementia someone has until a post-mortem examination of the brain. (I am currently awaiting the results of my husband's autopsy.) Doctors must base their conclusions on observations and symptoms and what the caregiver describes. Autopsies often reveal more than one kind of dementia is present, so the symptoms doctors have to work with may not match exactly what they'd expect. Sometimes the diagnosis seems vague because that is the best the doctor can do under the circumstances.

My suggestions are to try to talk to her doctor directly and to focus on her symptoms and what can be done for them.

Hugs and warm wishes to you. It is awesome of you to give your dad some regular respite and to care so much about your mother's well being. I hope you find resolution to at least some of your questions.
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