I'm really interested in Fred Hassan's characterization of Alzheimer's disease as our biggest health care challenge. Wondering what others think of his article and proposed solutions: http://www.huffingtonpost.com/...our-bi_b_287044.html

Dear Edward,

Hello and Welcome to the AD Message Boards.

Do you of a loved one have AD?

Please, share more about yourself with us. We're here to help.

I did go to that link. It was very interesting. I'm just not sure who that is.

Can you tell me more about him too?

I read the document also. It seems to be accurate and I agree with Lisa.

Another program for World Alz. Day. This seems to be on some unknown to me cable station. I wonder if it will stream on line.

FEATURED IS A BEAUTIFUL EARLY ONSET LADY.

From today's Alz. news.


Premiere of 'Not Fade Away' September 21st

(Source: Retirement Living TV) - As the baby boom generation moves through retirement, the number of people affected by Alzheimer's in the U.S. is likely to well exceed 11 million by 2040.

In recognition of World Alzheimer's Day, Retirement Living TV will air an exclusive television special, "Not Fade Away" on September 21 at 8PM (EDT). The documentary features stories from people diagnosed with the disease and explores its grave impact on the victims and their families. Equally important, this original program uncovers some of the latest findings in the search for answers and a cure.

To view the trailer click here,

Go to full story: reuters.com

quote:

Originally posted by EdwardLeffler:
I'm really interested in Fred Hassan's characterization of Alzheimer's disease as our biggest health care challenge. Wondering what others think of his article and proposed solutions: http://www.huffingtonpost.com/...our-bi_b_287044.html

I read Mr. Hassan's blog as well. He is absolutely right. We need big fish like him to help little fish like us carry the message to our FDA and Surgeon General.

Right now there are pro-active steps that can be taken.

A prophylactic dose of a cholinesterase inhibitor can be prescribed by a physician when:

Anyone over 60(?) who has a family history of AD and notices a bit of his own forgetfulness.

Everyone over 60(?) who receives a yearly physical exam and scores borderline on an MMSE test (which has become a routine part of the physical).

Also, special incentives might be given to college grad students whose research involves AD.

I'm sure there are many other possibilities that the rest of our group can propose as well.

John,
I have to put my two cents in. I strongly feel that anyone who shows any of the symptoms you mentioned, should have a complete work up. This usually includes blood work, scan (PET, fMRI, etc.) and a neuro-psych. There are other factors, which may be correctable, that can cause memory problems. So the doctor should not assume, but check it out. Also, some forms of dementia react better to one type of medication, than to another.
That said, anyone who is worried about their memory should demand a full work up. If your doctor won't, look for a gerontologist, a Memory Clinic, a neurologist, etc. etc.

What each of us can do is go on line and write to our two Senators and Congressional Representative. Ask for support of :
Senators: Ask to co-sign two bills :
S1555. This makes provision for a coordinated Federal approach, supervised by the White House, for research related to Alzheimer's and other dementias. This is a fulfillment of recommendations made by a committee composed of people such as Newt Gingrich and Sandra Day O'Connor. I was fortunate to attend that committee hearing last spring when I attended the Alz. Assoc. Public Policy forum.
S1492. The Alzheimer Break Through Act. This calls, first, for increasing research funding for Alz.
Second, more support for caregivers. (More patients are being cared for at home than are in Assisted Living or Nursing Homes. It is one of the most difficult and unpaid jobs that I am aware of.)
Third, A national summit to look at research and programs.

House of Representatives: Ask to cosign H 3286, the same as S 1492, see above, The Alz. Break Through Act.

Ditto what Mimi said.

And to answer Lisa's question about who Fred Hassan is ... he's Chairman of the Board and Chief Executive Officer of Schering-Plough Corporation, one of the largest pharmaceutical companies in the world. Once their proposed merger with Merck is completed, they will be the world's fourth largest drugmaker.

quote:

Originally posted by Mimi S.:
John,
I have to put my two cents in. I strongly feel that anyone who shows any of the symptoms you mentioned, should have a complete work up. This usually includes blood work, scan (PET, fMRI, etc.) and a neuro-psych. There are other factors, which may be correctable, that can cause memory problems. So the doctor should not assume, but check it out. Also, some forms of dementia react better to one type of medication, than to another.

You cannot give every person of age who comes in and says "I can't seem to remember where I put my car keys and my mother had Alzheimer's" an MRI and PET scan and expect to hold down the costs of the an upcoming Alzheimer's epidemic. I doubt that these tests would be discriminative enough to detect Alzheimer's at its very early stages. Perhaps, after a six month followup, they might be warranted, depending on the patient's status then. This same protocol might then be used to check for other diseases.

I'm not sure whether we each have the same idea of the severity of symptoms that I described.

By the way, can you give a brief description of the contents of H 3286 and S 1492 for those of us who haven't heard of them.

Well, but, there haven't been any studies to show that a "prophylactic" dose of a cholinesterase inhibitor will do any good at all for someone who is too early-stage to be diagnosed. Perhaps it might even be harmful.

The MMSE is entirely too unreliable to be used as the basis for prescribing cholinesterase inhibitors, even for patients who score well below "borderline".

Mimi recommends a complete workup. This starts out with the appropriate blood work -- which includes tests that are not used for a routine physical -- and if the results indicate there is another reason for the memory problems, the "complete workup" stops there. It doesn't go on to include the brain imaging etc. And, hopefully, it does result in a treatment that could reverse the dementia symptoms and prevent long-term brain damage. Prescribing a cholinesterase inhibitor when the problem is something like hypothyroidism isn't going to do any good, and letting the patient get sicker and sicker for six months' "observation" might do a lot of harm.

And ... the sooner one gets a reliable diagnosis of a dementia syndrome, the sooner one can take steps to get the right treatment, including non-med "interventions". And surely taking the right steps to slow down the course of the disease / delay the onset of serious behavioral symptoms and the need for extensive care will be sufficient cost savings to more than offset the cost of an MRI and a neuropsych eval?

Hi All, the easiest way to get more information on any bill in Congress is to put just the number into your search engine. Ex; S1555 And most likely, i didn't try, you can get a copy of the entire bill.

quote:

Originally posted by JAB:
Ditto what Mimi said.

And to answer Lisa's question about who Fred Hassan is ... he's Chairman of the Board and Chief Executive Officer of Schering-Plough Corporation, one of the largest pharmaceutical companies in the world. Once their proposed merger with Merck is completed, they will be the world's fourth largest drugmaker.

Thank you JAB for giving us Hassan's creds, which indicate a point of view heavily biased in favor of what the manufacturers would have us rely on: pharmaceutical solutions.

I am not a health professional or anything other than a caregiver for a dear husband who is almost five years into the journey from brilliant mind that could light up many with his analyses to confused, tongue-tied and fog-bound three-year-old in an old man's body. But after attending a care-giver's support group for many months, where I heard the experiences of several families with Aricept and Namenda, I have developed a very dim view of the "big pharma" approach. I now feel that once you have seen a scan of a brain with Alzheimer's you will realize that we are being sold a bill of goods when they attempt to take advantage of our desperate hopes by implying that these drugs will turn around or alleviate these conditions.

We used Aricept briefly, until severe diarrhea caused us to set it aside. Namenda was tried for several months and then discontinued because it didn't seem to have any effect. Later we resumed Namenda because without it he seemed to lose some of the awareness that enabled him to do personal things like keeping track of time, brushing teeth etc. It helped, but after several more months of using it, I know this won't last much longer with --or without --Namenda.

I am seriously wondering if there are not some ethical questions that need to be addressed much like those that come up with the "do not resuscitate" situation. Are we using drugs to drag out the lives of our loved ones out of guilt or some other needs of the caregivers and their families, only to have the pharmaceutical giants bankrupt the treasure of the LO who would probably have much preferred their children and grandchildren have the benefit of it? What would I want for myself if I were the one with this catastrophic disease?

I know this is very painful terrain, but think it is time we opened up a discussion of the implications.

Hi Gil's daughter,
You bring up a few points which I, as a person with Early Stage Alzheimer's, would like to address.
1. When doctor's prescribe Aricept, I wish they would discuss side effects with the advice to call if side efects appear. One of the possible side effects is diarrhea. Mine was compounded by the same effect in another drug I was taking. A lactose free diet, along with an acidopholis pill in the morning and yogurt in the evening worked for me. Insomnia was another side effect which can be alleviated. Yet, I hear of too many people stopping the meds without trying alternatives.

And those of you who recognize my name will know that I advocate EARLY DIAGNOSIS to start medication and a proactive regime of strenuous physical exercise, strenuous mental exercise, Meditterean diet with supplements and active socialization. This regime is still working for me three years after diagnosis. I am still further ahead cognitively than I was at the time of dx. Medication, by itself, slows down the rate of deterioration, but with the above regime and EARLY DIAGNOSIS, who knows for how long the inevitable is delayed.

2. Continuation of medication. I firmly believe that at some point, probably late mid stage, all medications that are intended to prolong life are stopped. When a person is no longer capable of any meaningful existence, what is the point of prolonging that last stage? Let nature take its course. For me that would mean not only stopping Aricept but also my heart medications.

What do others think?

quote:

Originally posted by Mimi S.:
I, as a person with Early Stage Alzheimer's,
What do others think?

Mimi S.,

Would you be kind enough to let us know exactly what tests were used to detect your EOAD "EARLY"? I personally do not think that any such test exists. (Of course, we might all have a different mental picture of just what early really is).

For example, my wife is in the moderate stages of the AD and was "diagnosed" about 10 years ago by a series of detailed mental status tests. Now, 10 years later, her neurologist tells us her brand new MRI looks like that of a NORMAL woman of her age--no lesions, little shrinkage.

However, both of her parents had it and her only sibling had it. They have all since passed on. So, this is why I truly believe that she has it. It is familial.

Now, on to me. My mother had it and eventually died from it, so I too have a family history. I have noticed I am not as mentally sharp as I once was. I forget things that I would have remembered a few years ago.

I feel pretty confident that I can pass a mental exam with no trouble, though. Nevertheless, I told my GP about it and about my mother's Alzheimer's. We agreed that I would begin taking 5 mg of Aricept per day. I have done that since May. (At first, there was a diarrhea problem, but very little of it now).

I still think that I am slipping. For one thing, I can never remember how to spell diarrhea without looking it up! Normal aging? Maybe.

So, when I return from Florida next May, I will probably ask my wife's neurologist to see me as a patient to study this further.

JAB, you made a good point about checking things such as thyroid. I'm going to suggest that to the neurologist.

Nevertheless, I still would like to know how we can truly detect AD early?

I don't know if I have it, but I am willing to risk taking 5mg of Aricept (that might do some TBD harm) because AD is such a scary disease.

As for what to do with patients who are in their very late stages, in my opinion the doctor should suspend treatment and let them go.

John

I came late to this discussion but I'd like to join in.
My personal impression, based on my own history, my family's history, and from what I've learned in the past year from these boards, my reading and from attending conferences sponsored by The Alzheimer's Association, is that what we call Alzheimer's disease is a spectrum of diseases stemming from inflammatory and degenerative causes. Some people seem to have a fairly steady decline over a few years. Others wax and wane over many years, with varying responses to medications and other treatment interventions.

Mimi, I agree with your approach. I believe there is much room for optimization of health markers, such as nutrition, physical exercise, and avoidance of toxins, such as tobacco, alcohol and most pharmaceuticals. I would also add the value of limiting stress and of having a strong positive attitude and value system.

I believe dementias will come to be viewed like cancer, with aggressive efforts at prevention of known risk factors and aggressive treatment of disease caught early.

John, instead of using lost keys as a symptom, we should be asking seniors and other concerned patients if they are having trouble managing their finances. I suffered a significant decline in handling my own finances in 2003. But my doctors were clueless about the significance of this symptom. They still are clueless.

Three months ago I was seriously considering entering into an assisted living situation. Now that I understand what's happening with me, and I am responding to a volley of treatments, I am confident that I can live independently for a while longer at this same level. I still have to make accommodations but at least I know what I'm up against.

Glory be to God and the caring people of these message boards!

Iris L.

Hi John,
I'm far from Early Onset. I was 78 at the time I was diagnosed.

However, there are many things that you are saying about yourself, that make red flags go up in my mind. (Oh, and I still have to spell check that d word every time.) You notice a decline. Keep a notebook handy and record the ones you are aware of. For some reason, doctors will pay more attention to written notes than vague, I'm getting worse. And I think comparing yourself to what you used to be able to do is significant.

Early detection is something the experts are still debating. I'm looking for an answer to the question: how early can dementia be picked up on a scan and which scan is best? Can a neuro-psych pick up indications before a physical exam can?

Your doctor did something that drives me up a wall! He put you on Aricept without a full work up. There are many, many things that can cause dementia like symptoms. About 20% are caused by things unrelated to memory. Things as simple as meds and others more complex like hydrocephalus or brain tumors. That is why one needs a complete physical, blood work and brain scans. Also needed is a neuro-psych which can distinguish by the pattern of answers, the type of dementia. Some respond to one medication and others to another.

There are many things about the brain we do not understand. Did the doctors use the same type of scan on your wife? Are they sayinng there were certain evidence in the first that were not there in the second? If it's a different type of scan then that might account for it. If your wife is acting like she has dementia and all other physical causes have been ruled out, I'd go with the dx.

Why do you want to wait until May? I'd call 1-800-272-3900, the Alzheimer Hot Line and ask for a Memory Clinic or Hospital in your area that does diagnoses. And I'd work on the regime mentioned above, as well as others Iris suggested like quitting smoking, limiting stress, etc.

Please keep in touch

quote:

Originally posted by Mimi S.:

Your doctor did something that drives me up a wall! He put you on Aricept without a full work up. There are many, many things that can cause dementia like symptoms. About 20% are caused by things unrelated to memory. Things as simple as meds and others more complex like hydrocephalus or brain tumors. That is why one needs a complete physical, blood work and brain scans.

Please keep in touch

I should have given you a little more info about what my doctor knows. He does a complete blood work-up on me every year. He also gets a complete list of my meds (most of which he prescribes) every year. He knows that I have coronary artery disease, a slightly enlarged heart, sleep apnea, depression, problems with kidney stones, and insomnia. All these are being or have been treated.

He also knows that I had a bran MRI two years ago that was unremarkable.

The actual example I gave him of memory problems was that I could not remember if I had brushed my teeth before my visit.

Of all the doctors I've seen over my 66 years of life, I regard him as my go-to-guy.

I don't think my original post provided enough details about what he knew, so I want to clear that up. He's very good.

Furthermore, he knows that I am well-informed about my medical issues, and takes that into account as well.

John

John, the type of things you mentions, such as forgetting keys and forgetting if you brushed your teeth is ordinary absentmindedness. They can be related to the things you have going on in your life, such as everyday stress, insomnia or depression. Take a look at the 10 Warning Signs of AD from the main website for significant memory loss symptoms. Also, please consider how you are doing with handling your own financial affairs. It is a significant finding.

A term I heard from some of the members here is "caregiver dementia". Apparently, the very act of caregiving can cause one to lose one's mind--er, memory. You are carrying a heavy load, John. Think about that. Try to lighten your load. Come visit us in the chat room if you can.

Iris L.

I was dx with Ad at age 57.8 years later I told my Neuro I wanted to be retested so I was & now have Vascular Dementia...........I do take Galentimine(Razadyne)

quote:

Originally posted by Iris L.:

A term I heard from some of the members here is "caregiver dementia". Apparently, the very act of caregiving can cause one to lose one's mind--er, memory. You are carrying a heavy load, John. Think about that. Try to lighten your load. Come visit us in the chat room if you can.

Iris L.

Thanks for your concern Iris. I really need a break from caregiving once in a while. I have been talking to my wife's daughter about it.

I tried going to the Caregivers Chat Room, but there is just so much going on there that I cannot keep up with it. That's why I stay on the Treatments Chat Room.

All in all, though, things are ok for me. Being your own caregiver cannot be an easy task for you either. Good luck with that.

John

quote:

Originally posted by john1943:

I tried going to the Caregivers Chat Room, but there is just so much going on there that I cannot keep up with it. That's why I stay on the Treatments Chat Room.

John

Can you tell me where is the "Treatments Chat Room"? Thanks.

Iris L.

quote:

Originally posted by Iris L.:

Can you tell me where is the "Treatments Chat Room"? Thanks.

Iris L.

I'm referring to the "Medications/Treatments for Alzheimer's and Other Related Dementias" sub-topic, which is two below this one on the Main Menu of this board.

John

Okay, Thanks, John.

Iris L.