Hi to All,

I hope all of you will go to the alg.org web site and read, download and print the "Principles for A Dignified Diagnosis." Or you can get a copy from you local AD Assn. Please, give them to others, especially Doctors and other Caregivers.

I hope you agree and enjoy this. We worked on these for quite some time.

I hope you all can check out this amazing document. Here is the direct link to the pdf

Principles for a Dignified Diagnosis

Take care,

I find it hard to believe that so many people who have AD/EOAD and their caregivers haven't read or are not familiar with the Pamphlet "Principles for a Dignified Diagnosis."
This is a very important document written by people with Early Stage and Early onset Dementia. This was written to help All of us maintain dignity and help during the stressful diagnosis period and thereafter.

Please, Everyone, take time to read this and pass it on to others with AD/EOAD and their Doctors and other caretakers.

Thanks.

Lisa, did you write it?

Alan,
I didn't write it but I was part of the group that did. We worked hard to get the right perspective.

What do you think?

Lisa, it's a tremendous work of art and intellect. I understood each of the points right off, which doesn't always happen with me nowadays. I can't think of anything to add.

My wish: You and your pals compose another work, this time on dementia patients getting ready for the doctor? And maybe one on general principles of living with dementia?

Alan,
Thank you for your input. It is very important to me.
As for other works and writings, I'll bring your request to the board. Any ideas??

I hope you were able to print the Principles, show them to your wife, doctors and others.

ttt

quote:

My wish: You and your pals compose another work, this time on dementia patients getting ready for the doctor? And maybe one on general principles of living with dementia?

Alan, I was one of the pals. The plan to do arose at the first face to face meeting of the National Alz.Org Advisory Group in Chicago. Initial comments like: “You have Alzheimer’s. Take this and come back in a year” along with too many others to list led to a committee working with Shelley Bluethmann. We took it up brainstormed many than Shelley turned it over to the group via email and we pounded back and forth with Shelley editing it in the end.

If Lisa’s pals take it up wonderful. If not, on the advice of Lisa I suggest we prepare our own list of ten for each “Going to the Doctor” and “Living with Dementia.”

My recommendation, Alan or Lisa either of both start it with your recommendations, one thread for each. Pick a period of time, with limit, for recommendations. One or both of you with help of anyone you ask do an edit.

Get that done and submit it to Shelley. I am certain she will appreciate the ground work and will follow through with its approval of NatAlz.Org. In the meantime we have the fun of two threads to work with.

Mike,

Thanks for your input and all you do.

I believe Shelley B and the new Early Stage Advisory Group is working on this now. I will check and find out before I put all this on the forum.

Thanks.

I just wanted to say thank you to all of you, who have this disease and could just fold up and go with flow of the progression. You research, fight, speak up, but most of all you share with us to make our road easier.

I'm sending this to all of my friends and family. Two family members have either been recently diagnosed or are experiencing signs of dementia. I truly hope it will help them to start the process and confront the medical professionals and will be treated with dignity.

Most of you have been put through the mill. You our brave and continue to stay strong and fight the fight.

With sincere appreciation, Becky

BeckyP,

Thanks Becky. I hope you're family members do well.

We're here if you need us.

Have a great weekend!

Lisa, This year's Early Stage Advisory Board should be convening soon in Chicago, so it may be a bit premature to know in which direction they are moving.

Thinking about preparing a list for a doctor's visit. Is this possible? Each of us has unique problems. I think some generalized idea might be to keep a notebook, one section of which is 'doctor visit'. As you experience something you want to discuss with your doctor, make a note. Then a day or two before your visit, go over your list. Which items are still important? Write them down and put the list where you won't forget.

I agree with you Mimi. What we do will be a help to them. I doubt they would consider us intruding on their prerogative. It is in fact ours at the grass roots to let them no what we think and fine tune that if they choose from the Advisory Board which is formed to advise them of what is on our mind.

This is thoughts from three of us on last years board, anyone else have a thought?

If we go ahead, Lisa you could liaison with Shelley Bluethmann at NatAlzOrg and let her now what we are up to.

Alan, Mike, Becky, Mimi et al,

An Initial Doctors Visit List might be helpful but everyone would need to realize that it would not be all inclusive and each person would need to personalize it for their own needs.

Do we agree on this?

Ok, let's get started. But remember (lol) that we can't be too long winded.

Any thoughts????

quote:

An Initial Doctors Visit List might be helpful but everyone would need to realize that it would not be all inclusive and each person would need to personalize it for their own needs.

Lisa, I've been thinking about this, and I think I don't understand the question well enough. Would the Initial Doctor's Visit List (IDVL) be a blank, for the patient to fill in?

I would be troubled if it had symptoms already on it. Might just be me, but I'd worry about power of suggestion at an early & vulnerable time. BUT . . . . On the other hand, I can see the usefulness of a IDVL Symptom Checklist, with all common early dementia features to choose from.

Or . . .??? Heck, I have no idea right now. Maybe later.

Is there a website that has that IDVL where I could muse on it?

Alan,

Thanks for sharing.

No, there's no website. We have just been talking about putting a document together called the "Initial Doctors Visit List."

Things people may have in common on that first visit, symptoms and when they began or were noticed, maybe adding the New 10 warning signs, principles for a dignified diagnosis, common questions people want answers to and so on. Getting treatment and referrals after testing is done.

Does this help? We could use your help.

LIsa, the only thing that comes to mind is, who needs to be saying what's on that Initial Doc Visit List? I'm thinking that would be the doctors? And/or nurses?

I know when I started working seriously with doctors, they taught me how they needed to hear a case presented, the way doctors do it with each other. I'm sure you had to learn it too, didn't you? Could that be adapted, I wonder?

We can't go to a doctor and spring a ton of information on him - - he has his next patient to move on to. So, I'm thinking an inverted triangle outline, like is used in newspaper writing. Which is, put the things the doctor needs to hear most on top, things that absolutely need to get out, so the doctor can intelligently make the decisions for the next steps.

Is this anywhere near helpful? I'd love to help, I just don't always know when I'm making sense.

Hi all,
Go to the Alz. main page and on the right, near a link for the 10 signs is a link for an initial doctor's list. Check it out. I've been recommendinng it to people I speak with who are concerned about their cognition.

Enjoy the last of summer weekend. Hope you are doing something for yourself.

OK Guys,

My Short 2 Cents Here. (Well maybe not so short.)

I agree with Alan about the "Power of Suggestion". Plus the Alz Assoc does have a lot of materials out there for the 10 warning signals, the simple test to take etc. I think the initial stuff is out there. Unless it is a a simple "Why I am worried/think I may have AD. But I think I have seen that also somewhere."

I think what would have helped me would have been a list for after the initial diagnosis. What to ask the doctor. Most of the time we are in such shock/disbelief.

Perhaps we might ask to schedule a "consult" visit with our doctor. Provide the questions in written form for the doctor to use to go over our concerns. I have done this with my doctor. I have actually given her my little notebook that I had made my list of issues.

What can we expect? What to do next. Drugs that would help? When to take them? AM/PM? What about working, driving? Can I make my own medical/financial decisions. I want to make it clear also who they can speak with in regard to my medical condition, HIPAA. Do they think that my medical records support application for SS Disability?

What would they do next if I were their spouse, sister, mother? Should I see a neurologist/other specialist? Get Baseline neuropsych testing? Pet Scan? Gene testing? Do I need it? Should my children be tested? Are those things necessary?

I suggest these questions because some doctors, like my internal medicine doctor, make the diagnosis without all that other expensive testing. (Not everyone is fortunate enough to have good primary and secondary insurance.) She did however send me to a neurologist.

BTW, the neuro never did give me a "confirmed diagnosis". He first wanted to rule out sleep disorders, and evaluate my long standing fibromyalgia, both which cause memory issues. He did all that, treated all that, and he still "feels" I am too young (58)for AD. So he won't say one way or the other. Just admits I have some kind of dementia but won't say I DON'T have it when I ask point blank.

BUT, he did put me on the Aricept and Namenda and his medical records did support my application for disability.

There you go. My Thoughts.

Lynn

Good points, Lynn. While at the Alzheimer's Forum meeting in Washington this past spring, I met a staff member from the Philly area. That office has made contact with the hospitals, etc. in the area that do diagnoses. Everyone diagnosed in that area, is contacted by the Alzheimer's Assoc. the first week of diagnosis!

We need to somehow duplicate that in the rest of the country. And yes, there are problems. Lynn would, probnably never have made the list. So many different health professionals make the diagnosis. The Alz. Assoc. should be able to contact various Memory Clinics and other places that give the neuropsych. That still leaves many. Possibly having a closer relationship with some GP Medical Societies would get the Assoc. names. (I can dream, can't I?)

I'm not really very good at this, but one response from the doctors I'm hearing from all of you with EOAD, like Lynn B said, "you're too young to have AD." Maybe something with the statistics showing how many there actually are diagnosed with EOAD, as early as in their forties.

Another thing that comes to my mind dealing with my moms doctors is, how far are they willing to go for diagnosis and treatment.

Are they willing to do research to back up what we have found out on our own and want to try, whether trials, meds or alternatives. Are they willing to listen.

We are limited in our area with medical professionals for dementia and most I've experienced won't go outside the box or even do the research and check things out. And since we are limited, I'm kinda stuck.

Which gets us back to a good diagnosis. From what I've read, one needs a neuropsych from a qualified professional and some kind of a brain scan such as a PET of fMRI. The possibility of a dementia that can be reversed needs to be explored.
And we need to contact our legislators so that the ability is provided for all people, regardless of age, to get whatever tests are needed for an accurate diagnosis.

I'm in a similar situation as Lynn. I have a history of lupus/fibromyalgia and a cognitive deficit based on the results of the neurocognitive testing and I'm on Exelon patch and Namenda but the neurologist said this is not dementia. An educator from the Alzheimer's Association told me this is a cognitive impairment.

The Alzheimer's Association is supposed to be also for those who have the "related memory disorders". I think there should be some indication that treatment with medication and lifestyle changes are appropriate even if there is not a definite diagnosis of Alzheimer's Disease. What I'm trying to say is that there should be some place for those diagnosed with what is called mild cognitive impairment, even though it is not really mild.

Iris L.

Iris,

I actually would not be surprised if in the end, when they autopsy it's not AD. I don't think I need to go through the PET Scan etc at this point. Because, it doesn't really matter. I have dementia. Perhaps it really is my fibromyalgia that is the culprit. That's what my internal medicine doctor thought at first, but now she says it is EOAD.

It is really too bad that many doctors feel they know all they need to know about AD and do not really do the research. I have 2 wonderful doctors, internal medicine & oncologist, that are very up to date.

I think the fact that I have been seeing them long term, over 15 for IM and 10 years for Oncologist helps. When I finally hit bottom, they stopped and looked at what they had documented over the years, the testing they had ordered etc. It was all there to support my diagnosis of EAOD.

So at this point I feel dementia is dementia. We all need to be getting the necessary treatment.

Lynn

Iris

I completely agree with you. The practioners should be educated by their local Alz Organizations. I wrote to First Lady Obama. I received a generic letter stating the Health Care reform was being discussed, blah blah blah!

I wrote back and stated that I was insulted to receive a "generic" letter instead of a personalized one. I got no other response!
M

Hi Everybody

The last neurologist I went to wants to do another mental test. I won't do it! I will soon loose my insurance (due to divorce) and this new neurologist has yet to put in for my medicare!

This is ridiculous...I guess in the future I will have to apply for a "medical card"......this is humiliating. I will be considered an indigent!

With regard to all of our past, paying into a system., what do we get in return? Insults and discrimination.....it makes a person with any dignity left want to throw up their hands. The frustration is overwhelming. I don't know about you all, but at times I'd rather die dignified by my own prayers and my own hand.

M

Dear Mary,

I can relate! You can do one of two things.

Don't get divorced and force your EX to keep you on the insurance. A judge would definitely be on YOUR side! (While you do that, start the medicare process as sometimes it takes up to 2 years to get it).

Or, you can go to your doctor, take the tests ASAP and DEMAND that he start the medicare process immediately! Then, write your Senators, Congress people and local officials about your situation. Then, try to get on TV!!!!

Mary, don't take this lying down! You're a fighter. I know you're tired but now's not the time to rest! Remember (lol), the squeaky wheel gets the oil!!

Hang in there!

Please, give your doctor a copy of "Principles for a Dignified Diagnosis!"



Good Luck!

On this thread when the discussion related to Lists of Ten for going to the Doc and living with dementia I commented:

quote:

If Lisa’s pals take it up wonderful. If not, on the advice of Lisa I suggest we prepare our own list of ten for each “Going to the Doctor” and “Living with Dementia.”

My recommendation, Alan or Lisa either of both start it with your recommendations, one thread for each. Pick a period of time, with limit, for recommendations. One or both of you with help of anyone you ask do an edit.

There was some objection and other encouragement to do so than by natural inattention death of the idea occurred.

I do not propose to propose again, nonetheless offer this thought to the thread:

You will find detailed on my blog at my post entitled A Competent Personal Care Physician A discussion of the care needed in choosing a doctor skilled and educated about AD and able to make the diagnosis.

The posts references an article from the Alzheimer's Reading Room that I have posted on my Archive and hyperlinked the blog post to it.

I recommend the reading of both to re-new the discussion on this thread

Mimi:

you read my blog on this subject and responded as follows:

quote:

Mimi Steffen wrote:
Mike, I did go to your blog and tried to post a comment. Unsuccessful, so I cut and here it is:

quote:

Mike, You seem to denigrate the neuro. I disagree, knowing that it gives the doctor important information. Where are one's strengths and weaknesses. Do other instruments give you that information? Second: Blood tests are important because they can identify some other causes of dementia. Third:I would like to see a list of the most common scans given and what are the pluses and minuses of each. How early can each scan detect abnormalities? Can a neuro pick up lows before they are evident on a scan? Looking for a nearby site giving trials is an excellent idea. For some you need a prior diagnosis. It'd be great if you could say, hey, my memory isn't as good as it used to be and I'm interested in signing up for your clinical trial. And then all the testing is done. I assume all 'Memory Clinics" are not the same. How can one tell if that's a good place to look for a good diagnosis?

Mimi

1. You caught the subtlety in my comment about the Neuro-Psychometric. However I wasn't minimizing the test, I was minimizing the regard given it too often by members of the medical profession who minimize a diagnostic form not their own.

In my experience it is the most valid tool there is when the CAT-Scan and/or the MRI or PET Scan aren't able to produce results. I was given the diagnosis by a gutsy neurologist who exercised pure art form in diagnosing it on history and a few confirming tests a simulated driving test being the primary one and other tests that ruled out other possible causes.

The later Neuro-Psychometric validated the symptoms and the findings on testing that did exist.

2. In my case the Neuro-Psych produced findings that the CAT-Scan did not. Too early on the CAT-Scan, the damage was too diffuse to be shown. I couldn't do an MRI or PET because I have a pace maker.

The findings of the Neuro-Psych found my memory function which comes from the back part of the brain not as badly damaged consistent with my history. It found Multi-Tasking, Executive Function and Visual-Spatial functions, which emanate from the front portions of the brain to be inadequately low. This was consistent with my history particularly the findings on the simulated driving test that pertained to my visual perception. This led to a diagnosis of atypical AD, consistent with my symptomatology.

3. The article I posted on my blog A Competent Personal Care Physician directs itself to choosing the right doctor. This is the first step for the "Going to the Doctor."

The next steps are what to look for with what the doctor does on examination. When he says: "Take this and come back in a year"; this is not satisfactory. There is a protocol of testing the needs be done. What is in the protocol needs better heads than mine to specify. But as part of the ten it seems to me we should be recommending some minimal procedures necessary to ruling in or ruling out a diagnosis of AD

Other steps include history, deciding whether the historian should be you, your caregiver or some combination of both of you.

Choice of doctor is but the first step. Let's all consider and recommend 9 more.