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Mimi S.
Posted: Tuesday, September 3, 2013 3:43 PM
Joined: 11/29/2011
Posts: 7027


http://www.nbcnews.com/health/faces-alzheimers-note-maria-shriver-8C11034091
Iris L.
Posted: Tuesday, September 3, 2013 4:28 PM
Joined: 12/15/2011
Posts: 18354


The Age of Alzheimer's: A note from Maria Shriver

Aug. 20, 2013 at 3:00 AM ET   

Alzheimer's is a mind-blowing disease. For the person who gets it and for their family and friends. It affects millions and millions of people every day and the numbers are growing by the minute.  

That's why I'm so happy that NBC is shining its spotlight on this global epidemic that strikes so many here at home and around the world.  

Focusing on those living with the disease gives hope to others and shining a light on those trying to find a cure inspires them to keep going.  

This series will change lives. It will focus us all on the importance of this disease and what we can all do now to stop it, and keep us and our loved ones healthy.  

Join us for this series and tell us your story. It can impact, inspire, and ignite the nation.
 
 

 http://www.nbcnews.com/health/faces-alzheimers-note-maria-shriver-8C11034091
 


Geegee
Posted: Wednesday, September 4, 2013 7:56 AM
Joined: 11/29/2011
Posts: 514


I started watching this yesterday.  It's always heartwarming to see Maria because she is such an advocate for us. 


 

Happy, Happy, they are sharing the many new faces and ages of the Alz Age! 

 

THANK YOU MARIA SHRIVER!!

 


 


Mimi S.
Posted: Wednesday, September 4, 2013 8:17 AM
Joined: 11/29/2011
Posts: 7027


It is so easy to press the wrong button. I just deleted my first post.
The segment was on about 8:10 this morning Eastern time.
Genetics and life style were discussed. Also attempts to diagnose years before symptoms appear; [about the time changes in the brain and spinal fluid can be detected.]
Thoughts from anyone who watched?

Myriam
Posted: Wednesday, September 4, 2013 2:46 PM
Joined: 12/6/2011
Posts: 3326


Do you know if it's available online? I don't see it scheduled on NBC in the Seattle area.
Mimi S.
Posted: Wednesday, September 4, 2013 3:33 PM
Joined: 11/29/2011
Posts: 7027


Myriam,

It's part of the morning show. It was 8:10ish Eastern Time this morning.  Try searching on the web and see what comes up.


Mimi S.
Posted: Thursday, September 5, 2013 8:15 AM
Joined: 11/29/2011
Posts: 7027


Apparently it's on the 8 O'clock segment Eastern time. 
I really need to have a discussion on today's clip. No more til you watch it.

Mimi S.
Posted: Thursday, September 5, 2013 9:36 AM
Joined: 11/29/2011
Posts: 7027


Copy and paste

http://www.nbcnews.com/health/alzheimers-extracts-high-price-caregivers-too-8C11070658


Myriam
Posted: Thursday, September 5, 2013 12:14 PM
Joined: 12/6/2011
Posts: 3326


Wow, Mimi. What a great segment. So great that Maria is out there using her influence to raise awareness. It feels that in the last 6 months there has been a big jump in awareness. Do you feel the same way? 

 

I believe awareness leads to funding, which leads to a cure, and that the greater the awareness, the sooner a cure will be found.  

 

 This is the Alzheimer's Walk season around the country. Hope everyone takes part in your community. If you don't know how to find a walk near you, here is a site you can go to. Just click on your state: 

 

http://www.alz.org/index.asp 


Mimi S.
Posted: Thursday, September 5, 2013 12:25 PM
Joined: 11/29/2011
Posts: 7027


Myriam,
You thought this morning's segment was great!  Are you ready to have one of your children knock you off??
It freaked me out!!

Myriam
Posted: Thursday, September 5, 2013 12:57 PM
Joined: 12/6/2011
Posts: 3326


Mimi, many people will not agree with me and I believe I've posted this before, but I made the decision a long time ago that if a cure or something to stop the progression does not come along in time, my children will not have to worry about it. 

 

I am ever optimistic, but there is no way I want someone to have to wipe my butt and bathe me. Yes, I know there is the smallest of chance that I will miss my opportunity, but I truly have faith and am ever optimistic that a cure or something to stop the progression is just around the corner. I am on 5 different studies and am getting ready to start a new drug trial. I do this not necessarily for me, but for my children and grandchildren. As you know, I carry a hereditary form of AD. 


Mimi S.
Posted: Thursday, September 5, 2013 1:50 PM
Joined: 11/29/2011
Posts: 7027


Thanks Myriam, now I know where you are coming from.

 

Although, it seems to me that your progression is also proceeding at a snail's pace.

Do tell us the studies you are and are about to participate in. I'm amazed you can be in so many at a time.


Iris L.
Posted: Thursday, September 5, 2013 4:44 PM
Joined: 12/15/2011
Posts: 18354


Mimi, I think this is a terrible story.  The message about caregiver burnout has not gotten out.  Don't let dementia take down the entire family!  People on these message boards are encourged daily to take care of themselves and to find resources for their LOs.  Don't take on caregiving alone!

The dynamic of dementia in families and the community is more than memory loss in an elder.  More people have to know about this. 

People I used to be close to have already let me know that  not only wouldn they not be around to wipe my butt, they won't be around to offer me a kind word when I'm feeling low.  So I'm not expecting anything from my associates. 

I'm going to rely on professional help, if it comes to that point, despite the fact that I have learned that most professionals are CLUELESS.  I'm going to do as Mimi says, and search for those who are affiliated with the Alzheimer's Association and who know about Naomi Feil's Validation Therapy.

Mimi, I'm going to post this on the Caregiver's board.
http://www.nbcnews.com/health/alzheimers-extracts-high-price-caregivers-too-8C11070658 

Iris L. 

 


Mimi S.
Posted: Thursday, September 5, 2013 4:55 PM
Joined: 11/29/2011
Posts: 7027


Thank you Iris, i thought i was the only one upset by this segment.
Mimi S.
Posted: Friday, September 6, 2013 10:24 AM
Joined: 11/29/2011
Posts: 7027


Was yesterday the last segment? I couldn't find it this morning.
Iris L.
Posted: Friday, September 6, 2013 8:10 PM
Joined: 12/15/2011
Posts: 18354


Mimi, is this the segment from the Today Show that you're thinking about?

 
 

How Down syndrome may help unravel Alzheimer's puzzle

 


Mimi S.
Posted: Friday, September 6, 2013 8:41 PM
Joined: 11/29/2011
Posts: 7027


Thanks Iris.

Very interesting program. Perhaps more fuel for the folks who doubt that plaques and tangles have anything to do with getting AD.

However, what I was hoping for was a follow-up discussion of Thursday's segment. That one, although loved by Myriam, has left a very bitter taste in my mouth.

I had a dear cousin, very disabled by arthritis whose mind was still brilliant. Yes, she needed caregivers, but she could still hold forth with her political opinions.'"

 

Was the father really in the early stages of AD, or was he so far down the road he had no idea what he was doing?

At what stage was the daughter? Yes, she needed care, but was she at death's door? What resources did the community have to help the family?

And for the husband to brag about what a wonderful present his father gave him .... I'm speechless.


Lane Simonian
Posted: Friday, September 6, 2013 9:09 PM
Joined: 12/12/2011
Posts: 5138


High levels of myo-inositol are the link between Down syndrome and Alzheimer's disease.   

 

 

Molecule 'may offer Down's hope'

   

Child with Down's Syndrome
Down's syndrome is caused by an extra chromosome
Researchers believe they have identified a molecule that could be targeted to treat mental impairment in people with Down's syndrome.    

 

 

A team at the Institute of Psychiatry at King's College London found people with Down's syndrome have higher levels of myo-inositol in their brains.

 

They also found increased levels of this molecule are associated with reduced intellectual ability.

 

The study is published in Archives of General Psychiatry.

 

The researchers also suspect that high levels of myo-inositol could play a role in predisposing people with Down syndrome to early-onset Alzheimer's disease.

 

The molecule is known to promote the formation of amyloid plaques - a hallmark of Alzheimer's.

 

Once they reach the age of 40, almost all people with Down's syndrome show the brain characteristics of Alzheimer's disease - though they do not all go on to develop dementia.

 

http://news.bbc.co.uk/2/hi/health/4498652.stm 

 

http://www.docguide.com/myo-inositol-n-acetylaspartate-are-sensitive-biomarkers-conversion-mci-alzheimers-disease?tsid=5 

 

High blood pressure due to high sodium levels and high blood sugar are the other two major sources of myo-inositol in the brain. 

 

http://www.jbc.org/content/238/10/3224.short 

 

http://www.ncbi.nlm.nih.gov/pubmed/12366626 

 

Myo-inositol is not only the precursor to amyloid plaques it is the precursor to peroxynitrites which are the prinicipal cause of Alzheimer's disease.  It is possible to have peroxynitrites without plaques or in other words it is possible to have Alzheimer's disease without plaques. 

 

http://www.sciencedebate.com/science-blog/alzheimer-s-disease-without-amyloid-plaques 

 

http://www.ncbi.nlm.nih.gov/pubmed/11432978 

 

This is not the whole story of Alzheimer's disease, but it is a big chunk of it. 

 

 

 


Iris L.
Posted: Friday, September 6, 2013 10:44 PM
Joined: 12/15/2011
Posts: 18354


Mimi, here is a link to the comments from the caregiver article.  Be prepared--they are hard to read.

http://vitals.nbcnews.com/_news/2013/09/03/20312693-alzheimers-extracts-a-high-price-on-caregivers-too?d=1 

Iris L.

Mimi S.
Posted: Saturday, September 7, 2013 4:28 PM
Joined: 11/29/2011
Posts: 7027


Thank you, Iris.

 

Yes indeed, many were difficult to read. Most however, did not really address the situation portrayed in the TV segment. 

I do get, even though I have the disease, what caregivers go through. In my own family I have had experience with people with the disease.

 

There were many very sad examples of people trying to cope.  And my own family didn't know how to cope.

 

Yet we do know so much more about coping than we did even twenty years ago. On the alz.org site one may sign up for courses on caregiving. We have this incredible on-line support group. There are many groups available in communities throughout the country.  There aren't enough and we are solely lacking in support groups in the community for those of us with the disease.  Even on this wonderful site, the numbers in the I have the disease threads are a fraction of the activity in the caregiving threads.

Sadly, here in my little section of the world two evening groups for caregivers and one daytime group for those with the disease had to close down... lack of participants.  Yet we know the need is there.

People will not need to do what was done in Thursday's segment, or feel like so doing, if help were available.

If we could  only spread the good news about methods of coping, some involving medications and others good practices that show the patient we understand.



I and several others like me have been able to slow down our progression to a snail's pace. Granted, everyone's experience with the disease is unique. However, does that explain why these few are having a wonderful life and are still in Early Stage or are we really doing something that others in early stage should be doing?


Always on my wrist is a bracelet reading; A REASON FOR HOPE.  

That's why that Thursday segment is still having a profoundly sad effect on me.


Iris L.
Posted: Sunday, September 8, 2013 12:45 AM
Joined: 12/15/2011
Posts: 18354


It would be great if your filmmakers were interested in doing a follow-up story on you, Mimi, five to six years after diagnosis.  You would show people that there really is a reason to hope!

Iris L.

Unforgiven
Posted: Sunday, September 8, 2013 12:26 PM
Joined: 1/28/2013
Posts: 2659


Lane Simonian wrote:

High blood pressure due to high sodium levels and high blood sugar are the other two major sources of myo-inositol in the brain. 

 

http://www.jbc.org/content/238/10/3224.short 

 

http://www.ncbi.nlm.nih.gov/pubmed/12366626 

 

Myo-inositol is not only the precursor to amyloid plaques it is the precursor to peroxynitrites which are the prinicipal cause of Alzheimer's disease.  It is possible to have peroxynitrites without plaques or in other words it is possible to have Alzheimer's disease without plaques. 

 

 

 

 

 

I have a specific question about the above.  When you mention  high blood pressure due to excess sodium levels, do you mean that the mechanical damage caused by hypertension causes the brain damage, or does a breakdown of the excess sodium lead to the formation of myo-inositol and then to the production of peroxynitrites?
This is of pressing importance to someone whose diet is low in sodium but is drinking softened well water.

Lane Simonian
Posted: Sunday, September 8, 2013 12:52 PM
Joined: 12/12/2011
Posts: 5138


A major problem is more sodium being transported into the brain. 

 

The sodium/myo-inositol cotransporter is upregulated in people with a high sodium diet or with Down syndrome (because of an extra chromosome containing the gene for the sodium/myo-inositol cotransporter).  At the very least, a low sodium diet (or low sodium in drinking water) will reduce the risk for Alzheimer's disease.  On the other hand, angiotensin II (a risk factor for hypertension) and restriction of blood flow by hypertension in the brain can also contribute to the formation of peroxynitrites and Alzheimer's disease. 

 

 

 


Lane Simonian
Posted: Sunday, September 8, 2013 4:34 PM
Joined: 12/12/2011
Posts: 5138


Without Unforgiven's comment, I would never have thought of water softeners as a possible risk factor for Alzheimer's disease.  To my surprise, others have wondered about this possibility. 

 

http://askdrgottmd.com/water-softeners-bad-health/ 

 

Water softeners combined with fluoride in the water would likely increase the risk as sodium fluoride (and aluminum fluoride) are likely risk factors for Alzheimer's disease. 

 

In 1998 Julie Varner and two colleagues published research on the effects of aluminum-fluoride and sodium-fluoride on the nervous system of rats.  They concluded, "Chronic administration of aluminum-fluoride and sodium-fluoride in the drinking water of rats resulted in distinct morphological alterations of the brain, including the effects on neurons and cerebrovasculature." In layman's terms, it looked like fluoride and aluminum could cause Alzheimer's.

 

 

http://www.commondreams.org/views02/0819-06.htm 

 

I have a feeling that many different environmental factors may contribute to Alzheimer's disease including chemicals in water and in the air. 


dayn2nite
Posted: Sunday, September 8, 2013 10:26 PM
Joined: 12/18/2011
Posts: 3097


Iris L. wrote:
Mimi, here is a link to the comments from the caregiver article.  Be prepared--they are hard to read.

http://vitals.nbcnews.com/_news/2013/09/03/20312693-alzheimers-extracts-a-high-price-on-caregivers-too?d=1 

Iris L.
 


Holy moly, every time you think you've read the worst comment (not worst as in a bad comment), another one is describing an even worse situation.

There was one in particular, a short comment, but it stated the family would never get over it, and I'm assuming it was the entire experience.  I definitely feel that way, the disease is so pervasive and lasts so long you can't help but be different when it's over.  Sometimes good different, sometimes bad.

Iris L.
Posted: Monday, September 9, 2013 1:06 AM
Joined: 12/15/2011
Posts: 18354


It continues to sadden me that people who have cancer and HIV/AIDS are supported in their time of need while people with dementia are looked upon as burdens by many (not all).  I won't let this happen to me.  And I don't want euthanasia.  I want to live out my life around caring people, not people who think I'm a burden.

Iris L.

Unforgiven
Posted: Monday, September 9, 2013 12:49 PM
Joined: 1/28/2013
Posts: 2659


Iris L. wrote:
It continues to sadden me that people who have cancer and HIV/AIDS are supported in their time of need while people with dementia are looked upon as burdens by many (not all).  I won't let this happen to me.  And I don't want euthanasia.  I want to live out my life around caring people, not people who think I'm a burden.

Iris L.
 
Actually, Iris, there were some comments by the caregivers of cancer patients who were experiencing burnout because their loved ones refused to allow outside help.  They sounded resentful of the focus on dementia caregivers. There are some chronic diseases like MS where the caregiving goes on for years and often there is no money for assistance.

Unforgiven
Posted: Monday, September 9, 2013 12:56 PM
Joined: 1/28/2013
Posts: 2659


Lane Simonian wrote:

Without Unforgiven's comment, I would never have thought of water softeners as a possible risk factor for Alzheimer's disease.  To my surprise, others have wondered about this possibility. 

 

http://askdrgottmd.com/water-softeners-bad-health/ 

 

Water softeners combined with fluoride in the water would likely increase the risk as sodium fluoride (and aluminum fluoride) are likely risk factors for Alzheimer's disease. 

 

In 1998 Julie Varner and two colleagues published research on the effects of aluminum-fluoride and sodium-fluoride on the nervous system of rats.  They concluded, "Chronic administration of aluminum-fluoride and sodium-fluoride in the drinking water of rats resulted in distinct morphological alterations of the brain, including the effects on neurons and cerebrovasculature." In layman's terms, it looked like fluoride and aluminum could cause Alzheimer's.

 

 

http://www.commondreams.org/views02/0819-06.htm 

 

I have a feeling that many different environmental factors may contribute to Alzheimer's disease including chemicals in water and in the air. 

Fluoride isn't an issue with my water, since we're on a well.  However, the water is hard and the softening process leaves sodium ions in the tap water.  I may be able to convince my spouse that bottled drinking water is not a frivolous thing, because even if blood pressure is under control, the sodium is deleterious on other grounds.  We've already realized that while fresh produce might seem more expensive than processed food, it is cheaper in the long run than losing your health and cognition.

 


Sharon Hawkins
Posted: Monday, September 9, 2013 11:07 PM
Joined: 7/16/2012
Posts: 17


It disturbed me and no one seemed to say that this was not an acceptable alternative to living with Alzheimers/severe arthritis.  My fear is that this segment will empower others who have a similar circumstance to duplicate it.
Mimi S.
Posted: Tuesday, September 10, 2013 3:11 PM
Joined: 11/29/2011
Posts: 7027


I was positive i answered this earlier today.
Luckily I have a copy.
Sharon,
Thank you for contributing to the main reason I posted. 

How are you doing?

As often happens, the reason I posted and continue to be disturbed is for exactly the reasons you mention.

 

I haven't seen discussed the possibility that this was an act committed by an Alzheimer's patient who was further along in the disease than the son admitted. This puts a completely different light on it. Why were guns available in the home?

However,  let's assume the scenario was as the husband stated and agree with those who believe that  it is right to end one's own or others life when things get tough.  I want to know what had been done prior to help the patients and to help the caregiver.

How do we educate caregivers and those in the early stages of the disease that help is available? There are pharmaceutical and non medical methods available to help with behavioral issues. Hospice is available to help with the end of life stage. 

I will certainly grant that we must do much more to help with the physical care  of those in the mid and end stage. My own political belief comes into play here: I believe that the ultimate care of those whose care has become too much for the caregiver, must be shared by society in the form of the government.

And so, Sharon and I agree. There must be a discussion of this topic, in an arena that will reach as many people as that original segment did.

Iris L.
Posted: Tuesday, September 10, 2013 5:53 PM
Joined: 12/15/2011
Posts: 18354


Mimi S. wrote:

And so, Sharon and I agree. There must be a discussion of this topic, in an arena that will reach as many people as that original segment did.
 
Who will take the lead on such a discussion?  How often do members on this board urge and beg caregivers to remove guns and other weapons from the home, especially after a patient has exhibited aggression or made threats?  This is basic, even before the caregiver becomes overwhelmed. 

There are steps to take, such as evaluation in a geriatric psychiatric unit.  This is a medical decision.  The place to have this discussion is with the medical community.  Most PCPs don't know what to do with an aggressive dementia patient.

Iris L.

Mimi S.
Posted: Tuesday, September 10, 2013 7:01 PM
Joined: 11/29/2011
Posts: 7027


Oh Iris, Like that virtual trip to Alaska on another thread, I can dream big.


Your comment echoes my thought that maybe dad did the shooting in the fog of Alzheimer's. 

And my big dream is that the discussion should be a minimum of 15 minutes, half hour would be better. Where: on the NBC morning show and during the 8 AM eastern time slot. These are the people who watched that segment. These should be the people to whom the rebuttal is addressed.


Iris L.
Posted: Wednesday, September 11, 2013 1:57 AM
Joined: 12/15/2011
Posts: 18354


News people have a saying, "If it bleeds, it leads."  The stories of everyday caregivers is not interesting to the general public.

Iris L.

Geegee
Posted: Wednesday, September 11, 2013 8:05 AM
Joined: 11/29/2011
Posts: 514


Unfortunately, I have not been able to get on line with my laptop.  It's working now - Ya! ( Now for the catch up)

  

I missed being involved with this thread's discussion.  Great points!  However, I did watch the "Today" show all week.  The one day I had a conflict was this aired subject.  bummer.

Mimi and Iris are always reliable and now I can go back and watch this segment.  Then I will read the caregiver's comments.  Looks like late night reading.

thanks for sharing.
Mimi S.
Posted: Wednesday, September 11, 2013 9:29 AM
Joined: 11/29/2011
Posts: 7027


Gee-gee, Apparently one must not only watch the show but also read the write-up. I googled Shriver/Today Show and was able to find that segment and the commentary. A lot of the commentary I do not REMEMBER from the show. How reliable is my memory?

On the write-up was a link for a test for caregiver stress. I posted this link on both Caregiver threads.

I am certainly not opposed to a program that lets the world know about the incredible stress, sometimes lasting years, that caregivers may experience.

I just have many question about this particular episode. What steps were taken to alleviate the stress? And the Good Lord knows much more help is needed. 

My question is about the murder/suicide being an outcome to  emulate. No questions were asked about the competence of the father, whom the son described as being in the early stages of dementia, to be competent to know what he was doing. 

And more questions about why a gun was available.

And a further question about why a caregiver was not  in place. I'm assuming that the son was not present at the time. 

These are the points I'd like to see addressed.


 
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