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secundary dementia or frontotemporal dementia  This thread currently has 1,098 views. Print Print Thread
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SandrAruba
Sunday, April 15, 2012, 6:29pm Report to Moderator Report to Moderator

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Ee Dan
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I'll try to keep this as short as possible without leaving any important information out. I haven't been on the board that much lately and that is because of my mother. Four months ago she came to visit me from Holland and I while I knew that she was having trouble remembering things, I was still shocked to notice how bad her short term memory has gotten since I last saw her in Holland (which was in May 2011 and she came to Aruba December 13th).

Besides her non-existing short term memory she was deeply depressed. I have been giving her vitamin B12 for the past 3 months and is has definitely been helping. She is a more lively, smiles more, jokes every now and then. But there is still some "moodiness" in her. She still misses dad as if he passed away yesterday (it's been 24 years now) and I guess there will always remain some depressed feeling in her because of that.

I had the impression that she wasn't eating too healthy while she was living alone in Holland and I think I can say that I am right about that. When we ask her to make dinner here, she isn't able to do it. If she can't do it here, she can't and won't do it when she's alone. So for the last few months before getting here she did not eat too well. Now I knew that when people are underfed they tend to get all kinds of complaints including loss of short term memory. But since I wasn't seeing any improvement at all after two months, I had her examined by a psychologist. The results were that while she scored reasonably to very well in some area's, she scored very bad in the memory tests (and I mean very bad).

Because of that the psychologist came to the conclusion that she, most probably, does not have Alzheimer (Alzheimer patients score bad in all area's). She gave the recommendation that perhaps it could be secondary dementia, or another form of dementia (frontotemporal dementia comes closest to her symptoms in that case).

Secondary dementia is caused by other physical shortcomings (or a combination of them) such as bad working thyroid, depression, malnutrition, lack of certain vitamins and what not more. While I am almost positive that she was malnourished when she got here, we took care of that and she is eating very healthy now (she is also an A, so she is just eating what I am eating). I had her blood tested and her thyroid is working well, she is not as depressed anymore (B12 levels are also good), as is her B1 and B6. I did not take a bloodtest when she just got here so I can't compare but at least at this moment all is well. The only thing that is a little elevated is her glucose. She is a diabetic, so the doctor told me that we have to get that checked out by a specialist.

When I told him I wanted to see if there was a possibility that it's secondary dementia, he told me that I should not hope for that. The changes of it being secondary is only 10%. And thinking how so many things have improved, but her memory hasn't I think that he may be right. Remember she's here for 4 months now, so I should have seen some improvement in her memory area by now.

Her symptoms are:
- short term memory is almost non-existent. She couldn't remember she called her granddaughter for her birthday after 1 hour already (last week).
- she every now and then gets very angry for no reason.
- she cannot foresee consequences of her actions. For instance she knows very well that she has to eat when she takes her medication, but just refuses to do so (so I make her eat).
- she has no idea of time or date. She has no idea she's here for 4 months already.
- her personal hygiene is lacking. One week she will shower twice a day the next week she won't shower for days. She also will easily wear the same (dirty) clothes for days. So I tell her to change or shower etc.
- she has no interest in the world around her. I was sick a few weeks ago (for the first time in years, really sick) and she couldn't care less. In fact when I finally dragged my sick body to the kitchen to make me some coffee, she got angry with me that I did not make her any coffee.
- depression is much better, but there still is some. She often says she does not have any joy in living.
- she's constantly tired and sleeps about 10 hours per day.
- she remembers a lot from the old days, but the other day she couldn't remember her grandsons' name or the birthdays of her grandchildren. So her long term memory is also slowly degrading.

I could write a book about all the weird things that she has done these past months. At first you are amazed, then you get angry and hopefully soon I will accept it. The biggest challenge is the fact that she believes that she's doing fine. Which is logical, she doesn't know she forgets and her memory is that she does eat healthy and she does know how to take care of herself, but the fact of the matter is that she doesn't. She forgets if she had breakfast or not, she forgets to take her pills (which is why there is now a pill box marked with the times of day she has to take them), she forgets that she put a kettle with water on the stove. All these things put together make it obvious that she can't live alone anymore, hence the reason I am not letting her go home until my brother has a safety net in place in Holland for her.

What can I still do for her? Other then just making sure she takes her pills and eats well. Will a special vitamin mix give any solution?

I don't expect anyone to have a solution. All I can say is that the past months have been very hard. Of course there are ways of finding out what kind of dementia she has, but I ask myself, does that help? Only for Alzheimer they have a medicine that slows it down, but it cannot be cured. Furthermore the only way of knowing for certain what kind of dementia you have is postmortem. We have also been thinking of Korsakov (she is not an alcoholic but does drink 2 glasses of wine every day) and that cannot be cured either. I'm thinking that if I can take care of her for the time being, I should just do that. If she goes back home she will be placed in some kind of home, since nor my brother nor my sister will take care of her 24/7 like I am doing now.

Any thoughts/suggestions will be appreciated. Also thoughts and suggestions on how to deal with such a thing. I am having a hard time dealing with this.






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ABJoe
Sunday, April 15, 2012, 6:49pm Report to Moderator Report to Moderator

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Trehalose Complex is a new supplement from DPN that stimulates MTOR independent autophagy.  A mix of Trehalose sugar, Ribose sugar, and modified citrus pectin.  Trehalose stimulates the autophagy, Ribose provides cellular energy, and the pectin attaches to "garbage" to aid in disposal.  It helps with neurodegenerative diseases...
http://www.4yourtype.com/prodinfo.asp?number=NP067

Here is a blog by Dr. D. about it:
http://n-equals-one.com/blogs/2011/12/22/1851/

He also posted an audio presentation about it:
http://generativemedicine.org/blogs/dadamolab/?p=106


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ABJoe  -  Sunday, April 15, 2012, 6:59pm
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Victoria
Sunday, April 15, 2012, 6:49pm Report to Moderator Report to Moderator

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Just sending loving thoughts your way for this challenging time you are in.  I don't have a lot to offer right now, but will share whatever comes to my mind that might help.

I did think of Dr. D's new product, which is quite impressive - Trehalose Supreme.

Ahhh - - I see that ABJoe and I are on the same wavelength and posted at the same time.  So I won't provide the same links!  



Normal day, let me be aware of the treasure you are.
Let me not pass you by in quest
of some rare and perfect tomorrow.
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C_Sharp
Sunday, April 15, 2012, 7:03pm Report to Moderator Report to Moderator

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I am dealing with similar issues with my father.

There was some issues this week where medicine was missed and then because of the missed medications there was a fall ...

I was hoping we could transition to assisted living in the near future, but it appears more like a home may be necessary.  (My sister thinks that may need to happen as soon as next week, if we do not succeed in hiring inhome assistants)


I do not think there is any supplement/diet to reverse the disease one it has progressed as far as your mother's case.

DHA might help with both depression and the progression of the dementia.

I like what I am reading about Nrf2 activation.

http://www.amazon.com/XYMOGEN-.....334516234&sr=8-2
http://www.nrf2geneactivator.com/

But I do not have any confidence that it will overcome my father's issues.

I wish I could get my father to change his diet, but that has been a losing battle for years.



MIfHI                            I follow a SWAMI diet.
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SandrAruba
Sunday, April 15, 2012, 7:21pm Report to Moderator Report to Moderator

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I'll look into the trehalose, but I can't order from the Dr. himself. The shipping costs are just way too much for me (round 80 dollars).

From what I read it helps with parkinson and Alzheimer (and as such no doubt other types of dementia). But does that mean it only slows it down, or can it also reverse damage that has been done?




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C_Sharp
Sunday, April 15, 2012, 7:29pm Report to Moderator Report to Moderator

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Trehalose inhibits aggregation of β-amyloid (Aβ) to form amyloid plaques (A characteristic of Alzheimer's disease). Some literature suggests that trehalose is able to reverse the cytotoxicity caused by Aβ-40, but not by Aβ-42.


MIfHI                            I follow a SWAMI diet.
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SandrAruba
Sunday, April 15, 2012, 8:29pm Report to Moderator Report to Moderator

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Quoted from C_Sharp
Trehalose inhibits aggregation of β-amyloid (Aβ) to form amyloid plaques (A characteristic of Alzheimer's disease). Some literature suggests that trehalose is able to reverse the cytotoxicity caused by Aβ-40, but not by Aβ-42.


Hi C_sharp, first of all, so sorry to hear about your dad. Hope you find a solution soon. Glad you have a sister to help you. My sister has not called once since mom got here and my brother... well he's trying but quite useless to be honest. Besides that he's on the other side of the ocean.  

As for your answer, it took me some time to decipher/translate it  
it's always worth the try isn't it? I wish there was some way to measure if she is getting better or worse.




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Lin
Monday, April 16, 2012, 2:19pm Report to Moderator Report to Moderator

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My father who is in his 80's was very similar and after much testing we found out the vein in his neck was rather blocked and has killed some brain cells, it is called vascular dementia.
You might want to get that neck vein checked out just in case it is that.
Lin


Gluten/Casein and Yeast sensitivity.
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Amazone I.
Monday, April 16, 2012, 2:45pm Report to Moderator Report to Moderator

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Sandra, would def. go for n'acetly-l'carnitin & Alpha Lipoic acid in higher amounts, dito B-complex , omega 3-6-9 oils as a complex .... if you want to get more informed you might want consult http://www.orthomed.org the canadian orthomolecular league, beautiful people and therapists ....and as C_sharp mentiones perhaps give a try to this new stuff of Dr. D.;  here I am not expert at all...sorry


MIfHI K-174

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Jane
Monday, April 16, 2012, 4:08pm Report to Moderator Report to Moderator

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It's exhausting, isn't it?  I'm not sure that there's anything that you can do that will actually reverse it.  In my mother's case, they called it Alzheimer's but I was never really sure that was the correct diagnosis.  It's progressive but the progression varies from person to person.  In my mother's case, it was a slow progression.  For years she didn't seem to be any worse.  At the end (and ultimately it was a fall that killed her) she didn't know any of us most of the time.
I remember a few years ago I showed her a picture of her, her mother, her grandmother and me as a child.  She recognized everyone in the photo except for me.  She had no idea who I was.  It was very sad.  
Keep doing what you are doing and if possible, get some help.  You can't do it all by yourself,
(((((HUGS)))))
Jane
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Lin
Monday, April 16, 2012, 8:12pm Report to Moderator Report to Moderator

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SandrAruba,
The first few years of memory issues in the elderly seem to be hard to diagnose or that was our experience. I suspect with the various illnesses that can cause memory issues it is perhaps difficult for diagnosis until it reaches a certain point.  Not that you want to wait for that. I think what you have been doing is great and continue with that.
A good book to read "The 36 Hour Day" by Nancy L.Mace, and Peter Rabins, M.D. very helpful and has lots of tips whether it is Alzheimer's, dementing illness and memory loss in later life.  It gives lots of good ideas to help the person live more comfortably and safely.
Lin


Gluten/Casein and Yeast sensitivity.
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SandrAruba
Tuesday, April 17, 2012, 1:41pm Report to Moderator Report to Moderator

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Quoted from Lin
My father who is in his 80's was very similar and after much testing we found out the vein in his neck was rather blocked and has killed some brain cells, it is called vascular dementia.
You might want to get that neck vein checked out just in case it is that.
Lin


She does complain about pain in her neck often.

And Jane, yes, it is very exhausting. I often wonder if I'm doing the right thing. Wouldn't it be better to send her back to holland? That would mean she would go into some home and I just don't want that for her. But can I give her the attention and treatment she needs?




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