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Mom has dementia  This thread currently has 3,696 views. Print Print Thread
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SandrAruba
Tuesday, May 22, 2012, 12:55am Report to Moderator Report to Moderator

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Ee Dan
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Quoted from C_Sharp


I would have checked "Do you have a family history of dementia:" for Parkinson's.


I checked both parents and grandparents in that category. Will print out my new Swami tomorrow and compare it to my current one.

If not just for me not getting dementia, then at least to save my husband going through this with me. Dementia really is a horrible disease, the more I hear and read about it, the more I wish I could take it all away and heal my mother and anyone else who has it.




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SandrAruba
Tuesday, May 22, 2012, 1:01am Report to Moderator Report to Moderator

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Quoted from jeanb


A few weeks ago she decided to stop eating and I received a phone call from the home.  I suggested to my brother to give her some chocolate and coke, which she ate.  I then received a phone call from the nutritionist at the home saying the chocolate and coke were interfering with her nutrition.  I let her know that my mom wasn't eating their nutritious product, so perhaps their food was interfering with her nutrition.  My sister had to put my choke chain on me so I could walk away without losing it.  This is a real study in patience for me.



The balls on that nutritionist.. . I admire your restraint even if it was with the help of a choke chain, I would have gone completely ballistic.




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Spring
Tuesday, May 22, 2012, 1:21am Report to Moderator Report to Moderator

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Quoted from 18545
When his mother saw him she gave out a cry of glee, hugged him hard and took off with him to the nurses station where she called everyone around her and said, "Everyone, come here!  I want you to meet my father!"  My dad's face was crestfallen.  The next morning at breakfast my father sat there...beardless.  

I howled laughing when I read this, Kibble! Thankfully, even in the hardest times, sometimes there are humorous things that happen! Your grandmother got such intense joy from that, and the rest of you got what you wanted too! I can't even imagine how your father felt though! Hopefully, he was just happy for her!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Spring
Tuesday, May 22, 2012, 1:31am Report to Moderator Report to Moderator

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Quoted from SandrAruba
I checked both parents and grandparents in that category. Will print out my new Swami tomorrow and compare it to my current one.

If not just for me not getting dementia, then at least to save my husband going through this with me. Dementia really is a horrible disease, the more I hear and read about it, the more I wish I could take it all away and heal my mother and anyone else who has it.

Having to deal with arrogant "caretakers" is awful when I think of what you are going through. Are these people sadistic or what??!!

We have a friend, a surgeon (she's retired now), whose mother had Parkinson's really bad for over twenty years before she finally succumbed to Alzheimer's, and it was pure agony seeing that family go through that after all the years she had already suffered. She had a brilliant mind......... I really feel for you and hope you can see to your own needs in this terrible situation.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Lola
Tuesday, May 22, 2012, 5:19am Report to Moderator Report to Moderator

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Quoted Text
since I already marked diabetic and vascular problems (dad died of a heart attack). Since I am overweight, diabetic is a very possible threath for me..........How much info do you put into Swami?


check only what is, not what you believe might be......swami does the computing, given your hx and your family hx etc.....


''Just follow the book, don't look for magic fixes to get you off the hook. Do the work.'' Dr.D.'98
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The harder you are on yourself, the easier life will be on you!
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NancyEllen
Tuesday, May 22, 2012, 9:48pm Report to Moderator Report to Moderator

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I certainly empathize with all of you who are going through this difficult time taking care of parents.  I,too, am taking care of a parent with vascular dementia.  She is still at home at this point but will soon be moved to assisted living for memory loss.  I have a question about Aricept.  We were told Mom had vascular dementia in 2010 but she showed signs of it years before.  A quarterly visit from the nurse practitioner prompted her to prescribe, with the PCP's permission, Aricept for Mom.  She started taking it on Sunday and the Patient Care Technician who cares for my Mom said her appetite is off which is the opposite of what we want and she is extra tired.  Should Mom be taking this medication at this point?  I am not an advocate of prescription medications unless necessary and if this is not necessary, I don't want her taking it.


“He who is of calm and happy nature will hardly feel the pressure of age, but to him who is of an opposite disposition youth and age are equally a burden.”  Plato
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jeanb
Tuesday, May 22, 2012, 11:59pm Report to Moderator Report to Moderator

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My sister ICU nurse, my cousin geriatric nurse, all told us to give 3 weeks for medication to kick in.  It is very difficult to know if it is the medication or if it is another stage of the disease.  It took about 1 month for my FIL to show a steadying effect with Aracept.
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NancyEllen
Wednesday, May 23, 2012, 12:34am Report to Moderator Report to Moderator

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Thanks for that info Jeanb!


“He who is of calm and happy nature will hardly feel the pressure of age, but to him who is of an opposite disposition youth and age are equally a burden.”  Plato
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C_Sharp
Wednesday, May 23, 2012, 1:34am Report to Moderator Report to Moderator

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Sa Bon Nim
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Quoted from NancyEllen
I have a question about Aricept.  We were told Mom had vascular dementia in 2010 but she showed signs of it years before.  A quarterly visit from the nurse practitioner prompted her to prescribe, with the PCP's permission, Aricept for Mom.  She started taking it on Sunday and the Patient Care Technician who cares for my Mom said her appetite is off which is the opposite of what we want and she is extra tired.  Should Mom be taking this medication at this point?  


My father is on Aricept.

As noted above its psychological/nervous system affects take several weeks/months to be realized.

On appetite: I think with my father it may have increased appetite. At this point I do not remember how long that took to take affect.

My father is very sensitive to dose and it took 6-8 weeks to realize the effect of dose change.

Too little and he is listless has no energy and sleeps rests for 20+ hours a day.

Too much and he is standing up in church talking about how God has revealed to him how they all could become rich on the Internet. He has fliers which he tries to distribute, but the minister confiscates them.   Other things as well.


MIfHI                            I follow a SWAMI diet.
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Goldie
Thursday, May 24, 2012, 1:17am Report to Moderator Report to Moderator

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Moms are a whole different thing..

I am suggesting that all you people enjoy much more about what you can with mom or even without..   You need that peace time to make it through the day.. I did .. I needed all time spent on good things and all time wasted on stupid this or that..  

Even with 10 years of time with mom, who was mentally well until her last, I still miss the questions I now think of asking..  what was great-great grandmothers name?  what was your first big love? what do you miss the most? who do you miss and why?  I had taken mom to all places she wanted to go, and still, I swish for more.  Never enough time.. to late..  

The same for dad.. he was ill but I had not been well informed and was 3000 miles away.. next time I would call his Doctor and get info first hand.. I would have so many questions.. so much to share, even if it was only a piece of pastry, a glass of wine or some old photographs.  

And then oh boy.. inheritances.. another whole issue never to be anticipated.    


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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BHealthy
Monday, December 10, 2012, 8:49am Report to Moderator Report to Moderator

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My mother was diagnosed with dementia in 2005.  We found out about it in 2007 and I have been managing her care ever since.  She's 92 now and, though frail, she's tough.  She walks, sees, hears, rides an exercise bike, and she's continent.  She did a face plant last month and didn't break anything.

The average lifespan after diagnosis is supposedly 5 years and she is now in her eighth.

She was on Aricept and Namenda when she was first diagnosed but refuses to take any drugs now.

I just found this: http://www.coconutketones.com/whatifcure.pdf and this http://healthimpactnews.com/2012/coconut-oil-and-alzheimer%E2%80%99s-disease-the-news-is-spreading/ wanted to share them.

This paper was written in 2008, the article in December of 2012.  Have follow-up studies been suppressed?  Dementia is a billion-dollar business and the powers that be wouldn't want to cure/prevent it unless they could make millions selling a drug.  

Snopes.com has this to say about it: http://www.snopes.com/medical/disease/coconutoil.asp
Quoted Text
"Some people with Alzheimer's and their caregivers have turned to coconut oil...a few people have reported that coconut oil helped but there has never been any clinical testing done."
This is probably because drug companies can't make big money selling coconut oil and coconut oil producers can't afford the studies.

Not only will I be giving this to Mom, coconut oil is a beneficial for me, so I will be raising my consumption, too.  I'd rather have a rotten liver than a rotten brain.  Honestly, I would rather die of liver disease than live with dementia.

As hard as it has been to care for Mom what concerns me most is inflicting the same hardship on my family.  I follow my SWAMI but do not eat every listed beneficial; I doubt anyone could.  So, how do I know I am doing everything possible to avoid getting dementia myself?  My SWAMI does not change when I check/uncheck the dementia boxes even if they are the only boxes checked.  Does anyone else's?


"Excellence is the result of caring more than others think is wise, risking more than others think is safe, dreaming more than others think is practical, and expecting more than others think is possible."
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PCUK-Positive
Monday, December 10, 2012, 12:20pm Report to Moderator Report to Moderator

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Kind Regards PC. FIfHI Swami III Pro

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Monday, December 10, 2012, 12:28pm Report to Moderator Report to Moderator

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Quoted from jeanb
My mother is in one of the late stages of Alzheimer's, if I knew then what I know now, I would do the following;

1.  Get a baseline cognitive Alzheimer's test earlier rather than later.  My mother's IQ was extremely high, so even when we knew she was in the initial stages of Alzheimer's she tested really well and couldn't get on Aracept, a med that can keep one stable longer. My FIL got on Aracept earlier and didn't progress through the disease as fast as my mother.

2. Catastrophic reactions happen without warning and are complex and are not a reflection of care and rational thinking.  

3. Homes are used to families who do not want to face the reality of the disease so they tend to sugar coat the progression.  We don't want sugar coating and the home has difficulties in not being "nice."  They were relieved when we told them we understand their difficulties, but it was really important to keep us informed, no matter how painful.

4.  Drugs don't work.  When parts of the brain are being lost, many drugs are contraindicated and may do the exact opposite of what is expected.

5.  Pain management is really important.

6.  When the patient starts to lose interest in food, have them eat strongly flavored foods, my mother is only willing to eat chocolate, pickles and chips.  She says everything else tastes bad.

7.  This disease is "atypical" no matter what.  No one follows the same progression.

8.  Check your loved ones' body at least every  week.  They will tell you they know how to take care of themselves, but they can't.  Check for sores, toenails that need care.  Often they will obsessively pick at sores until they get infected.

9.  They do not get better, all you can do is keep them safe, in my mother's case, as she is violent now, keep others safe from her.


I would add that from what I have read I would initiate a low methanol diet. especially stopping things like Aspartame which is deadly for these types of illness.


Kind Regards PC. FIfHI Swami III Pro

Partner (F) is O+(Non) MN. Duffy Fy(a+b+),  Lewis (a+ b-) Gatherer.
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jeanb
Monday, December 10, 2012, 12:49pm Report to Moderator Report to Moderator

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My mother never had aspartame in her whole life.  She was however, a heavy smoker but never ate out.  I don't think I had a meal in a restaurant until I was about 15.  Everything came out of a garden or my dad butchered it himself.

My mother and I both have the APOE e4 gene which is a 50% indicator of Alzheimer's that is onset in ones' 80's.  I think glycation is a huge issue as indicated by Dr. D.  

My mother has become less violent, she cannot string words together in a sentence.  She has no other health concerns whatsoever.
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Amazone I.
Monday, December 10, 2012, 12:59pm Report to Moderator Report to Moderator

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BHealthy... bravooo you hit the nail   here in CH-land we got to know from our health departement that nothing at those times really works for any kind of dementia... incl. Alzheimers' but ok they all aren't informed about natural products in higher dosages.... and they do work!!! But no-one want's to know..it's too simple and then the question of avarice appears immediately... better to go and save a bit of money and looking for intake of prescribed and payed medication from the swiss healthcare system... but that those  often don't do the expected results... who cares ........all the rest means to pay attention of a lot of things in our lives.... no, we do need others to cope with those issues... amazing...amazing....all those blo...excuses for not acting adequately....


MIfHI K-174
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AKArtlover
Monday, December 10, 2012, 1:20pm Report to Moderator Report to Moderator

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Quoted from Spring
I have seen people with dementia respond very well to high amounts of the B-vitamins.




"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13,14
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AKArtlover
Monday, December 10, 2012, 1:21pm Report to Moderator Report to Moderator

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"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:13,14
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ABJoe
Monday, December 10, 2012, 5:53pm Report to Moderator Report to Moderator

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Quoted from BHealthy
Honestly, I would rather die of liver disease than live with dementia.

As hard as it has been to care for Mom what concerns me most is inflicting the same hardship on my family.  I follow my SWAMI but do not eat every listed beneficial; I doubt anyone could.  So, how do I know I am doing everything possible to avoid getting dementia myself?

From my understanding, these disease are largely caused by deposits of "junk" or un-removed cellular waste building up and causing sluggish or impaired neuro-function within the brain.  To reduce this, eating a low-toxin diet and working to keep the liver / kidney function high, as well as stimulating autophagy should keep the "garbage" content down and allow the highest functional level possible.

Action plan:  
Eat per SWAMI.  
Supplement to assist digestive / eliminative function, if NEEDED!  
Take Trehalose Complex to stimulate autophagy (for adults).
Obviously, treat any other conditions as they develop, but don't sweat (worry about) the rest - as there isn't any assurance that we won't get any specific condition.  We do the best we know and pray for the best!


RH-, ISTJ
Wonderful Wife = A+ Teacher; Darling Daughter = A- SWAMI Explorer
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Averno
Monday, December 10, 2012, 7:20pm Report to Moderator Report to Moderator

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My mother died from Alzheimer's, and behaved much as has been reported here. She was diagnosed within 2 years of my father's passing. He was the cook, and when her diet became her responsibility, she ate poorly and went downhill quickly. I think the diet should be the primary focus for anyone suffering any degree of dementia.
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PCUK-Positive
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Gatherer Rh+, NN, (lewis a+ b-) [Duffy Fy(a+b+) ]
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Quoted from jeanb
My mother never had aspartame in her whole life.  She was however, a heavy smoker but never ate out.  I don't think I had a meal in a restaurant until I was about 15.  Everything came out of a garden or my dad butchered it himself.

My mother and I both have the APOE e4 gene which is a 50% indicator of Alzheimer's that is onset in ones' 80's.  I think glycation is a huge issue as indicated by Dr. D.  

My mother has become less violent, she cannot string words together in a sentence.  She has no other health concerns whatsoever.


Smoking would be an even higher cause of AD due to methanol (think smoked meats fish) all avoids.

and I mention Aspartame because a lot of people take it when they are ill to avoid sugar, not knowing it is worse than sugar because it is 12 % methanol by weight. and form formaldehyde in the body which does the damage. it will speed up the disease whereas not taking any more methanol of any kind will not stop but it it will slow down the rate of decline. imo



Kind Regards PC. FIfHI Swami III Pro

Partner (F) is O+(Non) MN. Duffy Fy(a+b+),  Lewis (a+ b-) Gatherer.
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jeanb
Monday, December 10, 2012, 10:33pm Report to Moderator Report to Moderator

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My Grandmother also had AD, never smoked, had an excellent diet, exercised, but had a stressful life.  Like Dr. D says, none of us are getting out of here alive, we will all die.  Hopefully we can mitigate how genes express themselves with prescribed diet.
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SandrAruba
Tuesday, December 11, 2012, 1:26am Report to Moderator Report to Moderator

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How ironic that this thread is revived today.

I sent mom back to Holland in June where she went through all the testing and probing and more testing. She has Alzheimer, second stage and they put her on some medication that slows the disease down. Don't know the which. My brother moved her to a apartment near his house, so he can check in on her every day and she has day activities couple of times per week, she has a daily service that brings her her food. Home care comes by to make sure she takes her all her meds. So we were hoping that she would be able to live reasonably independent for a while still.

However, today he called to say that he is going to have her committed to an closed retirement institution, against her will if necessary. Turns out she has been going out for walks and getting lost for quite a few times now. My brother put a GPS tracker on her key chain, she turned it off! (he has no idea how she managed that). She has started smoking again and they have been finding cigarette butts in her pillow case as well as a lighter. And everytime they remove it, she goes out and gets new ones. There is a supermarket near by and she knows how to get there, but then can't always find her way back.

I called her today and she asked me when I was coming back. Apparently she thinks that the apartment where she is now living is mine and she is looking after it for me. She only wonders where the cats are (she used to look after my cats when I would go on vacation). And the day activities she goes to, she doesn't like it there because there are only old demented people there... (okay, that made me smile). Of course she is neither old nor demented. I said to my brother that those other people are probably all saying the same thing.
But mostly what I sensed from her was deep deep loneliness. She misses dad, so awfully much and it makes my heart ache.

I told my brother that she doesn't have to take that inhibitory medication if I have a say about it. Why would you want to extend someone's suffering? For your own satisfaction? Besides that, it is obvious that it is not helping. From the moment that she left here she has been getting obviously worse.

BTW, my mother does smoke, and took splenda when they diagnosed her with diabetes. I don't know if she got it because of that. I think that at a certain moment she stopped taking good care of herself, even though she denies that categorically.




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md
Tuesday, December 11, 2012, 1:55am Report to Moderator Report to Moderator

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Quoted from SandrAruba
How ironic that this thread is revived today.

I sent mom back to Holland in June where she went through all the testing and probing and more testing. She has Alzheimer, second stage and they put her on some medication that slows the disease down. Don't know the which. My brother moved her to a apartment near his house, so he can check in on her every day and she has day activities couple of times per week, she has a daily service that brings her her food. Home care comes by to make sure she takes her all her meds. So we were hoping that she would be able to live reasonably independent for a while still.

However, today he called to say that he is going to have her committed to an closed retirement institution, against her will if necessary. Turns out she has been going out for walks and getting lost for quite a few times now. My brother put a GPS tracker on her key chain, she turned it off! (he has no idea how she managed that). She has started smoking again and they have been finding cigarette butts in her pillow case as well as a lighter. And everytime they remove it, she goes out and gets new ones. There is a supermarket near by and she knows how to get there, but then can't always find her way back.

I called her today and she asked me when I was coming back. Apparently she thinks that the apartment where she is now living is mine and she is looking after it for me. She only wonders where the cats are (she used to look after my cats when I would go on vacation). And the day activities she goes to, she doesn't like it there because there are only old demented people there... (okay, that made me smile). Of course she is neither old nor demented. I said to my brother that those other people are probably all saying the same thing.
But mostly what I sensed from her was deep deep loneliness. She misses dad, so awfully much and it makes my heart ache.

I told my brother that she doesn't have to take that inhibitory medication if I have a say about it. Why would you want to extend someone's suffering? For your own satisfaction? Besides that, it is obvious that it is not helping. From the moment that she left here she has been getting obviously worse.

BTW, my mother does smoke, and took splenda when they diagnosed her with diabetes. I don't know if she got it because of that. I think that at a certain moment she stopped taking good care of herself, even though she denies that categorically.


I can relate to alot of what you say about your Mom. My dad passed away in 2004, and Mom went downhill after that. Sadly, she passed away on November 9.



Sirach 37:27
For not every food is good for everyone, nor is everything suited to every taste.



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BHealthy
Tuesday, December 11, 2012, 8:07am Report to Moderator Report to Moderator

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Quoted from jeanb
My mother never had aspartame in her whole life.  
My mother had lots of aspartame, she was always trying to loose weight, and I've always suspected that is what caused her condition.  I could never stand the taste, thank goodness.

Quoted from jeanb
My mother and I both have the APOE e4 gene which is a 50% indicator of Alzheimer's that is onset in ones' 80's.  
How does one get tested for this gene?
  
Quoted from jeanb
I think glycation is a huge issue as indicated by Dr. D.
Will have to research this...


"Excellence is the result of caring more than others think is wise, risking more than others think is safe, dreaming more than others think is practical, and expecting more than others think is possible."
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BHealthy
Tuesday, December 11, 2012, 8:13am Report to Moderator Report to Moderator

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Quoted from ABJoe

From my understanding, these disease are largely caused by deposits of "junk" or un-removed cellular waste building up and causing sluggish or impaired neuro-function within the brain.  To reduce this, eating a low-toxin diet and working to keep the liver / kidney function high, as well as stimulating autophagy should keep the "garbage" content down and allow the highest functional level possible.

Action plan:  
Eat per SWAMI.  
Supplement to assist digestive / eliminative function, if NEEDED!  
Take Trehalose Complex to stimulate autophagy (for adults).
Obviously, treat any other conditions as they develop, but don't sweat (worry about) the rest - as there isn't any assurance that we won't get any specific condition.  We do the best we know and pray for the best!
Thank you.



"Excellence is the result of caring more than others think is wise, risking more than others think is safe, dreaming more than others think is practical, and expecting more than others think is possible."
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BTD Forums    Diet and Nutrition    SWAMI Xpress  ›  Mom has dementia

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