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NY Times. I'm Still Alice & other comments.
Mimi S.
Posted: Wednesday, December 17, 2014 2:47 PM
Joined: 11/29/2011
Posts: 7035
Posted: Tuesday, December 30, 2014 4:26 PM
Joined: 12/5/2011
Posts: 795

Thanks for sharing, MiMi.


Very interesting.


Peace and Hope,


Paul Hornback
Posted: Wednesday, December 31, 2014 12:26 PM
Joined: 8/9/2013
Posts: 584

Mimi, thanks for posting. It was an interesting article. Not sure how to take it though but interesting none the less.

God bless, Paul

Posted: Monday, January 19, 2015 10:36 AM
Joined: 1/19/2015
Posts: 1

I read the book "Still Alice" and read parts of it to my husband. I found it to be very worthwhile in helping me understand what my husband is experiencing and very helpful to starting a discussion between us.

I would highly recommend reading the book.


Mimi S.
Posted: Monday, January 19, 2015 6:43 PM
Joined: 11/29/2011
Posts: 7035

Hi Designer. i read your profile. "Cognitive Dysfunction" is not a term used by professions in the fields as far as I know. What steps were taken in his diagnosis and by whom?

I'm glad you liked Still Alice.

Some of those diagnosed in Younger Onset found it hit too close to home.

Posted: Tuesday, January 20, 2015 3:28 PM
Joined: 6/3/2013
Posts: 795

FYI: The term 'cognitive dysfunction' has ICD-9 and ICD-10 codes, so it is being used and will continue to be used.

Let me try that without the apostrophes: cognitive dysfunction.

Mimi S.
Posted: Tuesday, January 20, 2015 7:15 PM
Joined: 11/29/2011
Posts: 7035

Being I am a patient and not a professional, could you tell me what those codes mean?
Posted: Wednesday, January 21, 2015 9:01 AM
Joined: 6/3/2013
Posts: 795

Hello, Mimi. ICD refers to the international classification of diseases. Later this year there will be a switch from the 9th version to the 10th, which will be greatly expanded and much more specific.
Jo C.
Posted: Wednesday, January 21, 2015 9:30 AM
Joined: 12/9/2011
Posts: 10764

Hi Mimi: This will be a bit long and can be a bit confusing, but that being said; most patients do not know about the coding system and it is VERY important to patients and ultimately, coding is key to having a medical bill paid by the insurer. Here goes:

ICD = International Classification of Diseases. There are two versions currently in use, 9 and 10. These are alphanumeric lists of classification of diseases and each diagnosis is assigned a specific code number of its own. If you have multiple conditions, each will have its own Code assigned.

These alphanumeric assignments are given to every single diagnosis, to symptoms and also to cause of death.

The word International sometimes raises eyebrows; but the coding system was developed and is overseen by the WHO (World Health Organization). In the United States, the centers for Medicare and Medicaid oversee the ICD Codes in conjunction with the WHO. They do this through the US National Center for Health Statistics.

As said, for each and every diagnosis a person has a code number. Every medical provider, no matter where they are, will be able to understand the diagnosis the same way as designated by the code.

If one has a chronic condition such as diabetes, COPD, heart disease, etc.; the ID Code stays with you in your record and follows you throughout your lifetime.

There are different Codes for different purposes: Diagnoses; Tracking certain diseases such as TB; HIV; Influenza, etc.; for Cause of death which also is tracked.

These Codes are valid worldwide and there is a number added to the codes that indicates which country the Codes are coming from. This really helps to track infectious diseases.

These Codes are used by all providers, doctors, hospitals, and all other healthcare providers.

NOTE: When we notice the Code on our paperwork we get from our doctor's appointments, these are CPT Codes (Current Procedural Terminology). These are used to indicate what services were provided for billing purposes. There may be errors made and often these errors will be why the insurer is not paying one's claim.

You will see the ICD Code on your Medicare EOB (Explanation of Benefits) and you can Google and look it up to see what it indicates.


On the billing, the HCPS Codes have two levels. One is the CPT code and another is the alphanumerical code . . . one identifies what supplies and services were provided when done so outside the physician office.

CAVEAT: Insurance companies and Medicare and Medicaid will NOT pay a claim if not submitted with Codes and they must be accurate.

Who does the Coding: One cannot just step in and willy-nilly try to apply Codes. It takes a highly skilled, highly trained person. There are multiple HUGE Code Books filled with Codes. One has Codes and sub-codes and shades of codes that go along with a person's diagnosis; especially during a hospital stay. Some providers try to do an up-tick in coding for increased reimbursement; but if caught, the claim is not paid, must be re-submitted accurately and there can be penalties to the provider.

So; if your claim is denied, but you feel it was valid and a covered benefit of your private insurance or Medicare or Medicaid, you will want to have the biller check the following and more:

- Did they bill the correct insurance? Sometimes our provider changes and the biller may not be up-to-date. Did they enter the correct policy number?

- Did they Code accurate patient information? Name spelled correctly, correct gender assigned, correct policy number, etc.

- Did the Coder use an accurate Code or make a typo or use an old, out-dated Code

- Did the Coder misrepresent the bill to try and maximize payment; they may have to audit the patient record to see.

I know some Coders and am just amazed at the complexity of it all and a good Coder is worth their weight in gold. Sometimes, we can take that literally.

So there we are; we become alphanumeric and we are tracked by multiple entities into perpetuity. Little did we know . . . .


Jo C.
Posted: Wednesday, January 21, 2015 9:46 AM
Joined: 12/9/2011
Posts: 10764

Whoops! Looks like Marta and I were typing in at about the same time.


Posted: Thursday, March 5, 2015 7:52 PM
Joined: 11/4/2014
Posts: 381

To be perfectly honest, I have not seen the movie, no will I. I did , however read the book , I wasn't impressed. I know its a work of of fiction. I don't think its actual reflection, of the real world.

How many of us here, are highly educated , and have a second home on the beach ?The book barely touches on the financial impact EOAD has on real people, living in the real world. I got a big kick out of the husband, that goes of to New York to persue his dream job. The adult children, then took over the day to day care. Right many of us care givers can relate to that ? The employer that gently asks her, to perhaps give up teaching. Though, she can stay on in some less important function. How many of our LOs got that option?

So a bunch of producers, and actors, and writers , made a whole lot of money, portraying a subject that's very interesting to the aging boomers. I guess its the same thing that motivates people to stare at a car wreck on the side of the highway.

I deal with the ravages of EOAD, with all its heartbreak, 24/7. I don't feel a need to be entertained, or reminded by it. I'm glad that some folks here enjoyed it. God knows, we need something, anything, to make our life easier.

No....sorry "Still Alice" didn't do it for me.


Posted: Friday, March 6, 2015 6:37 AM
Joined: 1/12/2012
Posts: 1432

Mike- I agree with you. Haven't seen it, don't want to.

I've read many, many books since Dan was dx'd and a few of them, while true stories, are just completely unrelateable to some of us.

Can't afford multiple homes, can't afford to move several times looking for the best place or climate, can't afford full time care. A great many of us struggle financially to stay home and care for our LO, with little to no outside help or family support.

does the move accurately portray the day-to-day incontinence, losing so many things, constant shadowing and/or questions, the anger or aggression, the difficulties we encounter trying to take our LO somewhere- you get my drift.

I suppose the movie was intended to portray the patient's anguish and struggles over the initial diagnosis and adjustment and for that I hear it is excellent and Julianne Moore obviously did an Oscar-worthy job.

Aside from that, it's not all that realistic to most of us.


Mimi S.
Posted: Friday, March 6, 2015 10:10 AM
Joined: 11/29/2011
Posts: 7035

My opinion: The movie focused on Early Stage and part of mid-stage.

It hits all socio-economic levels. All patients, more or less, go through similar paths.

Is it less devastating because one can afford full time care? I don't think so.

Maria Shriver has written and speaks about the devastation she felt with her dad ill with Alzheimer's on one side of the continent and she, with her family, on the other. She speaks about the greater devastation she felt her brothers went through because they were there with their dad. [I'm not sure which is worse: being there or not being there.]

The youngest daughter moved from LA to NYC in the movie to be with er mom. Did she completely give up her acting career? the movie didn't say. But if she was with her mm as much as the movie portrayed, she certainly gave up a lot of it.

Is it hard to watch? I was OK, but I'm long past younger onset. I used a wad of tissues while reading the book but only one in watching the movie. Many of my Younger Onset friends tried and could not finish the book. The reason? For them, it hit too close to home.

Iris L.
Posted: Friday, March 6, 2015 2:13 PM
Joined: 12/15/2011
Posts: 16421

Mimi S. wrote:
"Cognitive Dysfunction" is not a term used by professions in the fields as far as I know. What steps were taken in his diagnosis and by whom?

Mimi is right, in regards to the Alzheimer's Association. I had a diagnosis of cognitive dysfunction back in 2003, but nothing was done. When I mentioned this to an Alzheimer's Association educator, she told me that the AA doesn't recognize that term, but uses "cognitive impairment." I suppose this is where mild cognitive impairment comes in. My current neurologist and neuropsychologist use the term cognitive impairment.

What difference does it make? I do not believe Mimi was asking about ICD codes. A person given a dx of cognitive dysfunction will remain in the netherworld of uncertainty, lack of clarity, confusion, no resources, and in general, a miserable life, leading to more years of waiting for the next shoe to drop, and wasting time before a true diagnosis can be made and treatment can be begun.

I believe many professionals can be a bit too unfocused in regards to definitions while the patient's life is going down the toilet. Delays in diagnosis due to an inadequate diagnosis will result in depression, loss of relationships, loss of income and in general, a miserable life for the patient and family. The trend is toward early diagnosis and early treatment. It is a shame that so much time is wasted, when useful intervention could have been accomplished at an earlier time.

Iris L.

Posted: Saturday, March 14, 2015 9:13 AM
Joined: 5/20/2014
Posts: 4406

Jo.c, Thank you for the clear explanation and information about the ICD. I am more familiar with the DSM (Diagnostic Statistical Manual) but mainly with mental disorders. I have a copy of the DSM V and attended a training on some of the changes but only relative to mental illness. Are you aware of any changes in regards to dementia and cognitive impairment in the DSM V?
Mimi S.
Posted: Saturday, March 14, 2015 3:03 PM
Joined: 11/29/2011
Posts: 7035

I vaguely recall that there were some slight changes in the MCI. Perhaps Jo C. will see this and enlighten us.

Iris L.
Posted: Saturday, March 14, 2015 8:44 PM
Joined: 12/15/2011
Posts: 16421

Instead of MCI and dementia of the Alzheimer's type, the new classifications are mild neurocognitive disorder and major neurocognitive disorder. I had read last year about the changes. Here is one site that decribes the changes:

Updates in Dementia

It is detailed, but fairly easy to read if you take it slow. Read to the end.

Iris L.