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So the Doctor says, 'if you can tell me about your memory problems, you don't have dementia.'
JeanetteD
Posted: Tuesday, October 27, 2015 8:24 PM
Joined: 10/27/2015
Posts: 38


Hi there! I've been diagnosed with cognitive impairment by the neurologist, my eeg showed mild generalized nonspecific cerebral dysfunction; whatever that is. I went to the neuropsychologist today. I'd been preparing for this for months, so I had a journal and had rehearsed a list of the more serious problems I'd been having. and he told me 'if you can tell me about your memory problems, you don't have dementia.' That was before the pen and paper testing. He said he's leaning towards mild cognitive impairment.
I can't understand how he can say I don't have dementia when I can't drive (unless I want to get lost or go the wrong way on the highway), I can't shop, I can't cook (my son took the knobs off the stove because I've been burning everything), it takes me hours to do things I used to do in 20 min, etc. etc. etc. Has anyone else ran into this? I used to have a high IQ and was a statistician for years, now I can't even figure out how to tip the pizza guy. (They all love me, because they get $10 each time. I can add 10 to whatever the ticket says.)
I've been having just memory problems for around 4-5 years which has gotten worse and progressed into other areas. Is it abnormal to know in the beginning that you are having memory and other issues? I can't hide them anymore and it's obvious to family and co-workers. Is this something like saying 'If you think you are crazy, you aren't'.
I don't think the statement is valid.

llee08032
Posted: Tuesday, October 27, 2015 10:31 PM
Joined: 5/20/2014
Posts: 4408


Welcome Jennette,

I am sure that none of what you are describing feels "mild" in any way! It is not abnormal to recognize that you have memory problems or other areas of cognitive dysfunction and impairment. Unfortunately, it also is not abnormal to have our symptoms minimized by medical professionals with no real experience in treating dementia. Some persons (not all) do have agnosia and are unable to recognize that anything is wrong with them. Also keep in mind that the term MCI (mild cognitive impairment) can be misleading and nothing feels 'mild' about for some persons. I am not writing so well right now but others will jump in with more wisdom and lead the way. Please let us know how we can be of help?

The_Sun_Still_Rises
Posted: Wednesday, October 28, 2015 4:15 AM
Joined: 7/24/2015
Posts: 3020


Hi and welcome to the forum, please feel free to jump in anywhere or ask anything.

No, I don't think that statement is valid in the slightest. Unfortunately there is STILL a lot of misconceptions and misunderstandings rampant in the world about what dementia and Alz is and does to someone. I have often commented how frightening it is that I am often that at stage 5, I am still the most competent one around me.

I love your attitude (you said elsewhere) about not being ashamed. We didn't choose to become the face of dementia...but here we are. And it helps that you are open and honest about it so people can see that we are still here, and we did not suddenly become less human just because of diagnosis. I envision a world where others understand it as you do. Since I got diagnosed, I feel like I have to continually say, hey...wait a minute, I am still here.

They do need a baseline and need to see a change over time...that could be one hesitancy they have. I also know that they don't like to go straight to dementia because it is fatal.

Many of us, and I would like to suggest that it is most of us, know exactly what is happening to us...we might not know what it's name is, but we are aware we are struggling. Some people have part of their brain go where they are truly oblivious, but I suspect the number is smaller than the statistic because people often assume that if a parent denies to their child that they are having trouble that they are not aware. The condition of not being aware, is similar to not understanding your arm is part of your body. Only rarely on here have I heard something like that described...most often it is a parent saying they don't want their child's help and children not really understanding that so blaming the condition instead.

You will find, as you get to know people here...we are aware.

I am so sorry that you are going through these things. My one message is that there is still plenty of life between diagnosis and death...and it helps to engage in things you love doing. But I think you might inherently already know that.

Socializing helps the brain. There are some good online support groups you might be interested in. I find them really helpful and they are good at sharing tips and tricks for living with this.

Anyways, welcome...it is nice to meet you.


JeanetteD
Posted: Wednesday, October 28, 2015 8:49 AM
Joined: 10/27/2015
Posts: 38


Thanks so much for the welcome. I think it will do me well to participate here. To be able to read how others are living with these problems is comforting to me. I've been dealing with this for about 4 - 6 years in all and have only been having trouble with getting lost and the other more serious problems the past year or so. The past year is when it's been able to be recognized that I have a cognitive problem, by the doctors. Unfortunately I was not aware it takes so long to get a diagnosis, or I would have gotten things started a bit sooner. Now, it seems as if I've waited too late; not that anything can really be done about it. I know it's progressed, because I've watched it. I'm sure I'll forget I have this condition at some point, since I'll probably forget pretty much everything at some point. I'm ready for the closure a diagnosis brings, and the ability to move on to the next stage in my life. I want to get settled in with my care team, while I can still get adjusted to the new situation.

Michael Ellenbogen
Posted: Wednesday, October 28, 2015 10:05 AM
Joined: 11/30/2011
Posts: 4384


I had the same issues with my doctors who were idiots. You need to find new doctors.


Iris L.
Posted: Wednesday, October 28, 2015 11:25 AM
Joined: 12/15/2011
Posts: 18362


Welcome to our online support group, Jeannette.

Most of us have heard the same stupid statements, and worse. My own diagnosis is cognitive impairment not otherwise specified. Most of the patients with more advanced dementia have a characteristic called anosognosia, in which they are unaware of having dementia. I believe, this is what he was talking about.

But not every patient, even with advanced dementia, has anosognosia. And most early stage patients do not have anosognosia. Also, there is not a specific defining line which marks when a patient crosses from cognitive impairment into dementia.

My own neurologist, the second one I consulted, started me on Exelon patch, which gave me significant improvement. I have been on this for six and a half years. along with Namenda.

We are all in a learning process here. I am sorry you have to be here, but I am glad you can join us to learn and receive support from your peers. We have people here with diagnoses of dementia and cognitive impairment and those who are not diagnosed.

Please feel free to post often. We want to get to know and help you.


Iris L.



The_Sun_Still_Rises
Posted: Wednesday, October 28, 2015 12:24 PM
Joined: 7/24/2015
Posts: 3020


I was just recently diagnosed myself after nearly 7 years, I so hear you on how long it takes to get diagnosed...they just don't look for it in younger people. On that subject, I ran into my physical therapist this morning (after OT) and had the chance to ask him (since we were talking about my recent diagnoses), and since he has seen me over the years and is well aware of my cognitive issues...anyways (thanks to reduced filters) I asked him why he never mentioned it could have been dementia? His answer, "well, it is a diagnosis of last resort" meaning, I believe, that we just don't like to tell people they might have it.

I get solemn looks whenever I ask people about anything in my future or how I will do things, or what my care options are...and no one ever tells me anything...so I think he has a good point.

Like you, I took a long time to get diagnosed, like you, I have had many years of worsening issues. Even years ago, I had to limit my driving to only places I knew really well and travel to often...in short, places I have auto-pilot for. Currently, with winter coming, I am trying to transition out of driving.

I use signs, cards, and notebooks that I wrote step by step directions for all my tasks that I do. I wrote them when I was still able to write them. Now I rely on them like someone would rely on a caregiver, and they walk my through my day.

I have ILS, PCA, Homemaking services that help me through a lot of things as well. Oh I guess I have a Case Manager and Care Coordinator (for medical) as well. We are currently working towards getting more hours as well.

I get lost in my house, and I cannot find things like the bathroom. I have endless trouble taking my meds, and I have exhausted every work-a-round I have come up with. I often get confused and disorientated when I am out. Appointments, while I can still manage them, it is a challenge. At this point I can just handle my core things and everything new or extra is just too much for me. I am Alz/dementia stage 5 of 7.

My ability to report what is going on is still very good. I am still very much aware of what is going on. I am starting to get a little sketchy about what skills I am losing or what parts of a task are missing (why something doesn't work), and I cannot tell others how to help me anymore. I sort of just need people to know, which I am very apologetic for.

I have a good primary doctor, she is an integrative doctor and I cannot say enough for integrative doctors. They not only see you longer, they take a holistic approach and look at whole body/mind...and they can rx regular meds and sups.

It can take a long time to build a good team of people who support you, who rather than just do their job are in the game for you. It is finally starting to come together for me, but it has been years in the making.

I am all about what we can do to help ourselves, figuring out tips and tricks and adaptations. It is nice to meet you.



JeanetteD
Posted: Wednesday, October 28, 2015 3:57 PM
Joined: 10/27/2015
Posts: 38


I have restroom signs on my doors leading to the restroom. We got them at home depot or lowes. They are not too big and are peal and stick. (Now if I can just remember I need to go the first time, and not get distracted before I get in there... I find I just have to go in there and give it a shot whenever I think about it.)
The_Sun_Still_Rises
Posted: Wednesday, October 28, 2015 4:42 PM
Joined: 7/24/2015
Posts: 3020


The OT's where I get OT are looking into a app that will allow you to program Siri on the iPhone to give you answers you put in. Like, Siri, where's my clothes? I will let you know what it is when I know.

I put lines on my ceiling in different colors, one for clothes, one for bathroom, and one for my meds...so all I have to do is follow the line and it will take me there.



JeanetteD
Posted: Wednesday, October 28, 2015 4:49 PM
Joined: 10/27/2015
Posts: 38


I will have to get a new phone at some point. I can't answer the house phone without hanging up on the person most of the time. I have an old flip phone. I am uncertain I can learn to use one of those new fancy smart phones. I have trouble operating the microwaves and window air conditioning units.


Michael Ellenbogen
Posted: Wednesday, October 28, 2015 4:56 PM
Joined: 11/30/2011
Posts: 4384


I love your idea. That is what I did for my work in the data center. Follow the spots in the ceiling that had different colors
JeanetteD
Posted: Wednesday, October 28, 2015 4:56 PM
Joined: 10/27/2015
Posts: 38


"I have ILS, PCA, Homemaking services that help me through a lot of things as well. Oh I guess I have a Case Manager and Care Coordinator (for medical) as well. We are currently working towards getting more hours as well."

I don't think I'll ever be able to afford help like this. Does your medical insurance cover some of this? What is ILS, PCA? It would be nice if I could later on get some help other than putting all the burden on my family to help me. Right now it's just my son and I trying to do it all, and I'm often more harm than good... 'Mom, you've flooded the laundry room. What are you doing?' lol.
We had to put my three cats down, to reduce the care burden, and to prepare for my eventual move back to where more family lives. My son's got more than enough with keeping up with me. I do still have my little dog. He's a great joy in my life.

alz+
Posted: Wednesday, October 28, 2015 5:15 PM
Joined: 9/12/2013
Posts: 3608


Michael Ellenbogen wrote:

I had the same issues with my doctors who were idiots. You need to find new doctors.


Michael! I love the way you get to the point.

I am so freaking aware of every loss that it feels sickening at times. My Dad on the other hand never mentioned having anything wrong with him.

I'm not sure any doctor but the first neurologist who diagnosed me was of any help. Glad you are using forum!

Wish you and all of us the best.


The_Sun_Still_Rises
Posted: Wednesday, October 28, 2015 5:47 PM
Joined: 7/24/2015
Posts: 3020


JeanetteD wrote:
I don't think I'll ever be able to afford help like this. Does your medical insurance cover some of this? What is ILS, PCA? It would be nice if I could later on get some help other than putting all the burden on my family to help me. Right now it's just my son and I trying to do it all, and I'm often more harm than good... 'Mom, you've flooded the laundry room. What are you doing?' lol.
-----------------------------------------------------------------------------------
I have my daughter and granddaughter living with me, but I often have to care for them as well...so I get a bit how that goes.

PCA = Personal Care Attendant, and YES, medical insurance will cover...you just have to ask. They will also provide medical transport to appointments.

ILS = Independent Living Skills, and regular medical insurance will not likely cover. But, if you had a mental health diagnosis (or got one) you might be able to get an ARMHS worker that does virtually the same thing, insurance covered. I am not exactly sure how you get that.

For PCA from insurance, they have to assess you as needing help with ADLs, or activities of daily living...eating, bathing, toileting, etc. With the troubles you are describing, it would seem likely that you could use someone "cue-ing" you through activities like showering, laundry, help making food, grocery shopping etc.

At the assessment, they only discuss ADLs...but after they check enough boxes, they give you hours...and you can use those hours any way you wish.

Example, I need someone to go with me to the doctor...but that is not an ADL, so I get hours based on ADL's and PCA goes with me to the doctor.

My words are not great today, but my heart is in the right place...hope you can understand what I am saying and that it helps explain.



JeanetteD
Posted: Thursday, November 12, 2015 4:34 PM
Joined: 10/27/2015
Posts: 38


Ok, well... Went back to she this guy. He would not give me any details about my test results other than tell us I did poorly. He said he thought I was frustrated taking the tests and that's why I did poorly. I tried really hard. He kept saying it's not dememtia because I know I have memory and other problems. He thinks it's depression. I did cry at him, but that's out of frustration because the memory and thinking problems are causing me sadness. You'd be sad, too; if you were having to struggle so much every day. Other than that, I'm not sad. He would not upload my test resutls, but said he'd mail them to us. He did not want to give me the results. He acted like they were his. He would not listen to my son at all.
Michael Ellenbogen
Posted: Thursday, November 12, 2015 4:52 PM
Joined: 11/30/2011
Posts: 4384


I would make sure to add your Dr name and city here to make sure no one uses them.

 


The_Sun_Still_Rises
Posted: Thursday, November 12, 2015 5:27 PM
Joined: 7/24/2015
Posts: 3020


What a jerk. Try not to take it personal. It is so easy for bad doctors to sink you.  Please see someone else, because you need someone that actually wants to help you.
alz+
Posted: Thursday, November 12, 2015 5:34 PM
Joined: 9/12/2013
Posts: 3608


One expects a doctor to know such things about dementia type situations and yet so many have no clue, as in the one saying if you know you forget things you don't have dementia.

I know you tried on the test and you did not do well on the test. This has nothing to do with IQ. You will not become lower in your intelligence - even though people some times treat me as if I am suddenly a much dimmer light bulb than I once was.

They mistake slowness to respond as lack of intelligence. Knowing that we have all encountered medical people with no clue, not even some of the "specialists" understand the condition that is mostly referred to as "memory loss" when the memories are still there, you just take longer to retrieve them and execute functions!

I have been very sluggish and sometimes frozen in place over years already, and yet today I painted a bedroom! OK, my husband did the finishing part but more because I can not use my arms over my head than cognitive or executive function stuff.

Be sure to check any meds for side effects...now is the time to believe n yourself. There is plenty of life ahead and I am so glad you are sharing here. It helps everyone to not be so shocked as they go through the circus of getting a diagnosis.


JeanetteD
Posted: Thursday, November 12, 2015 5:38 PM
Joined: 10/27/2015
Posts: 38


Really, I just want some meds to help me focus and remember something for more than 2 - 3 minutes. I don't think that's too much to ask.
JeanetteD
Posted: Thursday, November 12, 2015 5:49 PM
Joined: 10/27/2015
Posts: 38


He did write down for me to go to Lumosity, happy neuron, and get the book 'your memory: how it works and how to improve it.'
The_Sun_Still_Rises
Posted: Thursday, November 12, 2015 6:07 PM
Joined: 7/24/2015
Posts: 3020


((Hugs))

There are not meds for that, that I know of. 

The Alz/dementia class of drugs only increase the neurotransmitter available...but can come with unsavory side effects.

That said, some people like Adderal....but for that you have to get and ADD dx..and even then, only a few will rx it. 

I have had health issues for 7 years...6 of those years, I had less than helpful doctors that didn't do much but let me get worse. It took a lot to swallow my dignity and keep trying.  A year ago I found a good doctor, at long last, and this year I got 2 dx's.  When it finally happened for me, I couldn't help but think how much easier the road would have been if someone would have told me back then that it would take 6 years to get there. 

If one doctor doesn't help, roll the dice (when you can stomach it again), and try again.  Until then, do some nice things for yourself.  The hurt passes and turns in to a quiet f'em.  Don't give up on yourself.  You know there is something wrong, and eventually you will find it.  But yeah, the journey from here to there sucks.  They say, when you find yourself in hell - keep walking because eventually you will get out the other side.

Hang in there.  We are here for you.  And we care. One day at a time. 


Mimi S.
Posted: Thursday, November 12, 2015 6:58 PM
Joined: 11/29/2011
Posts: 7027


Putting personal information here about anyone is not a good idea and would likely be immediately removed.

 

You might try calling the help line 1'800-272-3900 and ask for good testing sites in our area. These are not usually a single doctor but a University or Medical complex that have Alzheimers/Dementia Centers.
JeanetteD
Posted: Thursday, November 12, 2015 8:16 PM
Joined: 10/27/2015
Posts: 38


I'll never have to remember anything ever again! Why didn't I think of getting one if these things before!!! 

grin emoticon I can just tell this thing what I need to remember and it'll tell me later!

Record-Breaking Functionality 8 GB of built-in memory supply up to 560 hours of uninterrupted recording time.

Now that'll help for the short term memory. If I can just get one to help with comprehension, attention, word finding, and with a built in GPS; I'll be set!


The_Sun_Still_Rises
Posted: Friday, November 13, 2015 7:26 AM
Joined: 7/24/2015
Posts: 3020


I am working assorting out how to use Siri effectively.  She can make notes for you and set reminders that chime at you.  She can get you directions.  She cannot be programmed to tell you were your clothes are...but maybe one day. 

Adding to the dumb things doctors say.  I just had a well renounned (sp) neurologist (who specializes in this no less), look at me and point blank tell me that Alzheimer's doesn't kill you.  It is not progressive or fatal. 

I am not sure if I rolled my eyes, but internally I checked him off my list - not you, so long and thanks for all the tests (which is all I needed anyways).

I think he was trying to give me a pep talk, or whatever....I was asking how to slow it down. 

They are a dime a dozen. 

I personally am very thankful that I have had witnesses to a long line of poor doctor behavior. I often joke about going into stand up comedy...but I think the only people who would get it are those with chronic illnesses...and even then, it would be much more funny if it wasn't so tragic. 

My internal self wishes to grab them by the shoulders and shake them and say, "don't you know we NEED you to save our lives!"  But instead, I smile and say thank you and a piece of my heart drops off and falls to the floor each time. 

Dementia would be much easier to take if the journey wasn't so spirit breaking. 

Most all of us have been there.  I think of each bad doctor episode as a badge...and feel like a decorated vetran...in the fight for quality care.

You are not alone in this.

 


alz+
Posted: Friday, November 13, 2015 8:06 AM
Joined: 9/12/2013
Posts: 3608


Jeannette! Introduce the DOG! Bassett or Beagle?

The DOG is the best medicine you'll find, in my opinion.   

I took Aricept for 6 weeks I think - it was like rocket fuel. I got a lot done and felt very energized but had to quit due to a reaction. Not sure it helped me recall stuff though.

There are few meds out there and many people get a great benefit from them. I hope someone does offer you something to try out soon.

I love that device to record thoughts etc but in my case I lose things.


JeanetteD
Posted: Saturday, November 21, 2015 10:11 AM
Joined: 10/27/2015
Posts: 38


Mr. Marley is a beagle. He loves me. 

The recorder is really helping save me a lot of steps where I know I need to remember something and will forget it in a few minutes. Probably the best purchase I've made! 

It's saving me so much from having to go back and look at something again, or walking into an area and forgetting what I was going there for. I just record what I'm going to do, or a couple of names I need to remember, or what I need to do. Since I'm going to forget right away, I just play it back in a few minutes - when I get where I need to and play it over and over until I get through doing what I need to do. It's like an electronic memory! It's not as hard as trying to learn how to work a smart phone, (or the remote to the tv or something like that. I quit watching tv because I can't get the remote to turn the thing off, and I can't follow the story line or figure out what to watch anyway). Record, play, stop; and then learning how to delete. I do have some trouble with getting it to stop recording, but whatever. I really recommend it.


annie789
Posted: Saturday, November 21, 2015 2:30 PM
Joined: 11/19/2015
Posts: 1004



Iris L.
Posted: Saturday, November 21, 2015 3:22 PM
Joined: 12/15/2011
Posts: 18362


Welcome, annie.  Your post did not come through.  Please try again.  You can also begin your own topic by clicking on the "Add Topic" tab at the upper right on the main "Younger Onset AD or Other Dementia" board.

If you still cannot post, call the Helpline number and ask someone to walk you through the process of posting.  The Helpline number is 1-800-272-3900.  

We are waiting to hear from you, Annie!

Iris L.


Mimi S.
Posted: Saturday, November 21, 2015 6:32 PM
Joined: 11/29/2011
Posts: 7027


Maybe Annie will be on one of the posts for Caregivers.
JeanetteD
Posted: Thursday, November 26, 2015 11:15 AM
Joined: 10/27/2015
Posts: 38


I'd argued with the doctor, telling him I wanted copies of my test results; because he acted like they were his and were a top secret secret. He wouldn't even discuss how I did on what test or what area; just said I did poorly. He said he'd mail them to me. He didn't. Messaged his office to get copies, they said I'd have to go to  the hospital and get them from medical records dept. Went to the hospital to get them, and filled out the forms. They came back and said I couldn't have my records without the doctor signing off on them, but that if and when they could get a hold of the doctor - they'd mail them. I need these results, so I can take them to the neurologist and my gp. These are MY tests and test results, not his. My other doctors need the actual test results.
Iris L.
Posted: Thursday, November 26, 2015 7:48 PM
Joined: 12/15/2011
Posts: 18362


Jeanette, I don't remember, are you still working for a living?  I know that you said on another thread something about standing in the hot Texas sun without a fan and sweating off 10 lbs in a day.  Is this at your workplace?  Often, a doctor may not give a diagnosis of dementia if a patient is still working and wants to or is able to keep working.  It may be beneficial to be flexible in this area.

Iris L.


JeanetteD
Posted: Thursday, December 3, 2015 6:23 PM
Joined: 10/27/2015
Posts: 38


I am still trying to work. I don't have anyone to support me financially. I can retire in a few years (2 or 3), but I'm not sure how long I can hold it together. I use check lists and my recorder and people help me. I probably can continue for awhile, since the people I work with are helpful to me and because I know I have issues, I tripple check and get help when I have problems. Most of the time, I am driven to and from work; (unless no one can do it and it's in the middle of the wee hours of the mornig.) Tried and tried to get the test scores, but all we ended up with was a summary oppinion with no scores at all. I don't think he even scored the tests. I called the hospital and complained to the person that handles those thngs. My family told me to advised them we know I have HIppa rights and that I need the test scores for base line numbers and for second oppinions, etc.; and that we'd contact an attourney if need be. I got frustrated at that man's arrogance. Some people couldn't diagnose cognitive decline unless you are ready for the nursing home. In the mean time, I'm using check lists, other tools, and relying on so many other people to help me get through each day. I am glad I have a couple days off. At least I don't have to try to hard sitting with my dog. He doesn't care if I forget what I was talking about. He just listens.

 


Iris L.
Posted: Thursday, December 3, 2015 7:53 PM
Joined: 12/15/2011
Posts: 18362


Doctors sometimes are afraid that patients will become upset over their results, so they may become protective of the results.  But you do have a right to them.

I hope you can keep working.  Seek out work accommodations, if possible.

Iris L.


llee08032
Posted: Wednesday, December 9, 2015 7:28 AM
Joined: 5/20/2014
Posts: 4408


Jeanette,

Happy to hear your co-workers are helping you out at work. Mr. Marley is adorable BTW! It should not be such a battle getting your test results and it is unfair that you have not received the full report. Please make sure your requests for the report is in writing via certified mail. You may also want to speak to someone from the Alzheimer's Association who may be able to assist in some way or advocate on your behalf.


BillBRNC
Posted: Sunday, December 20, 2015 9:36 AM
Joined: 12/2/2015
Posts: 1018


I think doctors hate to tell a patient they have Alz. I think cognitive deficit is their preferred diagnosis, or if they are being really top, they call it MCI. Well, what the heck do they think gradually progressive MCI over a period of years is other than early Alz or some other dementia, assuming all the alternate causes have been reuled out. Even my family doc who is a friend told me that he found it hard to believe I could have Alz because of how well I could describe my problem. Well, I'm not totally down the road yet, and I had notes of my symptoms in my hand, and I still got a lot of things wrong. I think a lot of docs mean well, but I don't think they fully grasp how desperate we are to know the bottom line truth so we can prepare our family and our lives for what is coming straight for us. This is why I've decided to go to a highly rated memory assessment clinic a couple hours from here, but how do I know they will do any better and not cop out. I don't know, but it seems like the best thing I can do. I have two diagnosis right now. One is progressive mild cognitive impairment. The other is early onset Alz. I guess the third one will get to mix and match. Good luck to us all.