Among Friends

[Noel7]

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@Drythe wrote:

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@Noel7 wrote:

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@Noreen wrote:

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@Noel7 wrote:

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I don't think it's about big pharma. 

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IMO, it IS about big pharma. I dont beleive they are looking at anything that cannot be patented. Also, I heard at a conference once, and also saw in my job, what happens when you are on aricept and then you stop. Basically you cant. So they have you.

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@Noreen

You can't just stop a lot of drugs, Prednisone is an example.

My point was that if they had a treatment or valid cure it would be on the market because it would make a mint.

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@Noel7    ITA

 So many drugs HAVE been created for heart / lung, muscular-skeletal, and other age related illnesses.  

While not wanting to be overly graphic, the big A destroys brain cells, leaving holes in the patient's brain.  It's not a matter of increasing blood supply, or numbing pain, the cells are gone.  Figuring out how to grow back brain cells, while still maintaining physical function, cognition, that thing we call soul, and personality is not going to be an easy.

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@Drythe

I hope so.  An older close family friend has been diagnosed and is in a care house.  He is like a brother to me and we love his family.  He has been through so much, I would love to see new advancements.

Right, I would guess halting progression might be the first real breakthrough.

[pitdakota]

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@Noreen wrote:

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@Noel7 wrote:

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I don't think it's about big pharma. 

.

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IMO, it IS about big pharma. I dont beleive they are looking at anything that cannot be patented. Also, I heard at a conference once, and also saw in my job, what happens when you are on aricept and then you stop. Basically you cant. So they have you.

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If only it were that narrow and simple.  Currently, in the United States there are more than 300 clinical trials for meds to address Alzheimer's disease. There are multiple other studies researching Alzheimer's meds in other countries.   But big pharma is not the only one involved in clinical trials by any means.  Research teams from multiple universities across this country are also conducting research for gene therapy and further research to understand the intricate and complex development of Alzheimer's disease.  In fact, researchers at the University of New Mexico think they may be within 5 years of conducting human trials on a vaccine for Alzheimer's disease.

There is also quite a bit of research taking place in Mexico, including stem cell transplant since research does suggest Latinos may be at a higher risk than other groups of developing Alzheimer's.

One singificant  factor that impedes research is a complicated mechanism for researchers to develop a program of research to obtain funding for example from the National Institutes of Health.  Many experiments don't obtain funding due to a number of situations that occur from this process. What many don't know is that there was a major provision in the Affordable Health Care Act that established & funded The Cures Acceleration Network. This whole purpose of this part of that legislation was to close the gap between developing ideas for research and getting that research to major clinical trials with funding.  Alzheimer's disease was one of the major driving factors behind this part of the legislation. 

If you visit the Alzheimer's organization website anyone can see the call to enter their loved ones into research trials.  That is another barrier researchers face.  Many caregivers are reluctant to enter their loved ones into clinical trials.  It takes some researchers that are funded 2-3 times the length of time they expected to get the number of subjects they need in the study.  It is difficult to conduct a clinical trial if you can't recruit subjects for the study. 

Alzheimer's disease is a  complicated, complex disease that impacts tens of millions of people worldwide.  It is a horrible disease.  And it can't be overlooked that many of those researching this disease have experienced the devastating effects of this disease in members of their own families.  

[pitdakota]

@Vivian  My heart goes out to you and your husband.  It is not an easy road as you know.  I would suggest you connect with a caregiver's group and visit the Alzheimer's Organization website.  There is quite a bit of information on that website and also discussion boards of those going through the same things that might be helpful to hear how they handled certain situations or what suggestions they give someone else there.

Although your husband is in the early stages and the only identifiable external symptom at this time is short term memory loss, there is quite a bit of neuro-cognitive impairment that occurs, which includes moodiness, resistance, and yes....downright stubborness.   This is common, even early in the disease.  He doesn't understand or really comprehend what he is doing but yet it makes perfectly logical sense to him.

Good luck to you in whatever you decide about what to do with the check for the car.  And big hugs to you. 

[luvdoodles]

No advice on the dealership issue. My father was diagnosed with early onset Alzheimers disease and it was really difficult for my mother day in and day out. She finally enrolled him in an Adult Day Care three days a week. A van came and picked him up and brought him home around four. It was just the break she needed. Maybe there is a program like this in your area. You need a lot a patience when dealing with a loved one with this disease and you need to take care of yourself also. Just remember that.

[Vivian]

The people on these boards are the best! Thanks so much for your kind support and advice. This illness is so ironic. If you sat down with my husband to talk about any subject, you'd never know anything is wrong with him. But just ask him what he said five minutes ago and he would not be able to tell you. His next neurologist's appointment is in a month. Given what I've read about a mild cognitive impairment diagnosis, the doctor may try to up the Aricept dosage. I hope my husband can tolerate that since side effects often appear when patients go from 5 to 10 mg.

As far as the personal vs bank check debacle is concerned, my husband finally agreed that paying for the car with a bank check is no big deal and he'll do it. I have to admit that my husband has always had a strong stubborn streak and a bad temper so at this point it's hard for me to discern the difference between MCI and normal hubby behavior. Sadly, I'll probably find out soon enough. He functions perfectly well now but I have no illusions about what may lie ahead. His grandmother died of Alzheimer's at 63 so he may well meet the same fate. Our town has excellent services and my plans have been made,  so at this point we're doing all we can and will wait and see where life takes us. Thank you all again!

[Noel7]

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@pitdakota wrote:

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@Noreen wrote:

---

@Noel7 wrote:

---

I don't think it's about big pharma. 

.

---

IMO, it IS about big pharma. I dont beleive they are looking at anything that cannot be patented. Also, I heard at a conference once, and also saw in my job, what happens when you are on aricept and then you stop. Basically you cant. So they have you.

---

If only it were that narrow and simple.  Currently, in the United States there are more than 300 clinical trials for meds to address Alzheimer's disease. There are multiple other studies researching Alzheimer's meds in other countries.   But big pharma is not the only one involved in clinical trials by any means.  Research teams from multiple universities across this country are also conducting research for gene therapy and further research to understand the intricate and complex development of Alzheimer's disease.  In fact, researchers at the University of New Mexico think they may be within 5 years of conducting human trials on a vaccine for Alzheimer's disease.

There is also quite a bit of research taking place in Mexico, including stem cell transplant since research does suggest Latinos may be at a higher risk than other groups of developing Alzheimer's.

One singificant  factor that impedes research is a complicated mechanism for researchers to develop a program of research to obtain funding for example from the National Institutes of Health.  Many experiments don't obtain funding due to a number of situations that occur from this process. What many don't know is that there was a major provision in the Affordable Health Care Act that established & funded The Cures Acceleration Network. This whole purpose of this part of that legislation was to close the gap between developing ideas for research and getting that research to major clinical trials with funding.  Alzheimer's disease was one of the major driving factors behind this part of the legislation. 

If you visit the Alzheimer's organization website anyone can see the call to enter their loved ones into research trials.  That is another barrier researchers face.  Many caregivers are reluctant to enter their loved ones into clinical trials.  It takes some researchers that are funded 2-3 times the length of time they expected to get the number of subjects they need in the study.  It is difficult to conduct a clinical trial if you can't recruit subjects for the study. 

Alzheimer's disease is a  complicated, complex disease that impacts tens of millions of people worldwide.  It is a horrible disease.  And it can't be overlooked that many of those researching this disease have experienced the devastating effects of this disease in members of their own families.  

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@pitdakota

Thanks, PD!

I've read recently about the studies in Mexico and also recently watched a PBS report on the difficulties in conducting Alzheimer's studies.  It's never as simplistic as a shout-out of "Big Pharma!".

[Noel7]

Hi @Vivian

I was thinking of you and just wanted to say hello.  I like pitdakota's advice of finding an Alzheimer's community board for support and advice. 

And take care of yourself...

[LTT1]

@Vivian

I have a "situation" too.

First, I landed on an article "Irritable Male Syndrome""Irritable Male Syndrome"

Reading this helped me.

I can't be certain, but I have been seeing changes in my spouse (and myself too) that signal what I call "tired brain.)

But last night DH had what I would call a childish tantrum over a triviality. This took me by surprise as this type of behavior is so very unlike him.

I remember when you first posted about your husband.

So I will be following you by reading your posts and I am going to begin reading articles, etc. What I need, just like everyone, is a way to prevent these incidences and how to deal with them when they occur.

Bless you.❤️

[LTT1]

@Vivian@Noel7@luvdoodles@pitdakota@Drythe

My mom and dad were selling their home many years ago.  

When the prospective buyers showed up, my father would not let them come in the house and told them to go away and don't come back!

When  my mother told me this, I was floored. 

This happened back in the day before Ahlzheimers  had a name.

I will never know how much my mom suffered in dealing with his personality changes, etc.

She did say, upon his death, "oh you don't know what I have been through. It has been awful."

When she started her descent into Ahlzheimers, her degree of disorientation only became apparent when I spent the night in her room in her "Independent Living" place.

oh, the scary antics she pulled -- including a joy ride into back cornfield  country roads in Indiana.

The police had to locate both her and her companion. Oh, dear.

[LTT1]

@millieshops@Vivian

In response to your post, I wonder if people with dementia remember what their original position/opinion was?

It seems that happened with my parents. They knew one was mad at the other, but they had no idea what the original issue was about?