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Nervous.
julielarson
Posted: Monday, December 12, 2016 10:45 AM
Joined: 9/30/2015
Posts: 1155


I have done it and asked to see my doctor for a referral to see someone at the teaching hospital here in our area at the brain institute. I feel kind of like I am sneaking behind my neurologists back but I feel at this time it is needed to see if there is something else going on.. They like to say it is medication or my mental health that is causing my memory problems, but I have doubts. What do you all think?
alz+
Posted: Monday, December 12, 2016 11:08 AM
Joined: 9/12/2013
Posts: 3608


go with your gut. the worst that can happen is someone else says "you are right, we can fix this or make it better" or "you are right, it is your medications and we can change that"or "we found a bug in our brain and removed it."

none of that makes sense because I have ALz today in spades, because I have fought neurologists for 40 years to be taken seriously and I am still miffed about it, I trust your gut, and it is possible something is munching on our brains and no one is looking for it because they are need the money that comes from more research on plaques and tangles theory. 

You are distressed, you know yourself better than they do. We have a very protective gut brain which is almost always right.

Gut instinct. No down side to soothing your gut instincts meant for your survival by getting more info anyway you can.

I understand the insurance and cost side of fruitless testing for things but we have the human right to find out if we can reverse or improve our lives. Behind you 100% whatever you choose to do.

Tip: the neurologists do not care if we don't believe them or see someone else. 

short story: when my skin lost sensation 30 years and I was overcome with fatigue my doctor sent me to a neurologist. He did a few muscle tests in his office then said "Married?"no. "boyfriend?" no "kids at home?" no. "I know a psychiatrist who can set you straight."

I went to 2 other neurologists and that first guy was contacted each time and told the doctors I was "attention seeking" (found out later). I kept trying until I found a woman neurologist who did some tests and thought it was MS. Since there was no cure I treated myself and improved alot over 3 years although the pinprick sensation did not come back. 

Looking back, it may have been the beginning of ALZ. Point is I stood up for myself and learned to manage my symptoms on my own.

sent a letter to quack and told him if he interfered again with my medical care I would sue him.

now compare you calm demeanor here with my blasting. You are very normal in pursuing this. If anyone suggests otherwise, still follow your gut.

love you friend. you are doing really good.



julielarson
Posted: Monday, December 12, 2016 1:15 PM
Joined: 9/30/2015
Posts: 1155


Alz, I love you too.. and thanks.. Yes it is time to check it out..
BlueSkies
Posted: Monday, December 12, 2016 1:51 PM
Joined: 2/24/2016
Posts: 1096


Spot on Alz!  

Go for it Julie.  I would.  Will give you peace of mind that you checked everything out.


julielarson
Posted: Monday, December 12, 2016 2:06 PM
Joined: 9/30/2015
Posts: 1155


Thanks Blue Skies!
Mimi S.
Posted: Monday, December 12, 2016 4:00 PM
Joined: 11/29/2011
Posts: 7027


Yes, Julie, 

Go for it!


julielarson
Posted: Tuesday, December 13, 2016 3:25 PM
Joined: 9/30/2015
Posts: 1155


I just talked with my prescriber and she seems to think it is all medication related.. I did not tell her that my IQ went down 30 points.. I also did not remember to tell her about the progression found during testing. I am going forward with getting refered for the Brain Institute. She asked me what if they say that it is all medication related.. I told her that is fine with me I just want some new eyes looking at this and seeing what they say.
Mimi S.
Posted: Tuesday, December 13, 2016 3:56 PM
Joined: 11/29/2011
Posts: 7027


Keep pushing.
julielarson
Posted: Tuesday, December 13, 2016 4:48 PM
Joined: 9/30/2015
Posts: 1155


Thank you Mimi, It is great to have cheerleader in my corner... smile..
The_Sun_Still_Rises
Posted: Tuesday, December 13, 2016 6:40 PM
Joined: 7/24/2015
Posts: 3020


While I do know that medication CAN, in fact, cause you issues.  Bottom line is, you know you BEST. 

That said, dementia will also drop you IQ.

But, for a TRUE dementia dx...one has rule out ANY possible other cause.  So you no wrong, you doing what is right, and good, and healthy in this situation.  Heck, you even doing what is sane in this situation...with intelligence and foresight. 

So do no let anyone make you feel bad about it.  Hold you head up high and do what you need do for you self....you do no owe anyone an explaination.


julielarson
Posted: Wednesday, December 14, 2016 5:37 AM
Joined: 9/30/2015
Posts: 1155


I guess at this point I want to know how much the medication is causing this. Also if it is medication related why is she not switching me to something else? I am getting angry over this.
The_Sun_Still_Rises
Posted: Wednesday, December 14, 2016 10:30 AM
Joined: 7/24/2015
Posts: 3020


Well, technically it can cause the whole thing.

I mean that is what is hard between MCI and dementia.  Although they on the same spectrum, dementia much more certain that what it is.  MCI can be from MANY varied sources. 

Depression can cause dementia-like symptoms (but neuropsych's can show the different patterns). 

Eating gluten, or wheat, can give one brain fog, make them forgetful, and have hard time do things...but eventually wears off.

A number of illnesses also give brain fog...which can remotely be like MCI.

The KEY feature between MCI and dementia - is MCI does NOT progress.  So all those with non-progressing MCI are no going progress, they are no terminal...and they do no have a clue what the rest us going through (although all around the internet some like think they do, and try speak for us). 

All dementia's have common key features, 2 of which are 1) they are all progressive; and 2) they are all fatal.  So getting a dementia dx is very much like being told you have terminal stage 4 cancer....only rather than sympathy, treatment, care, support....we are told sign our lives away and wait die.  We STILL have a very long way go in dementia care rights...and Alz Asso Caregivers are no at all helpful that (they busy fighting their rights and services, no ours).  Indeed, the moment you get a dementia dx...you doctor will start asking whoever brought you questions rather than you, or look them whenever you answer something see if you were right.  It is shocking how suddenly no longer human one becomes in others minds upon dx with dementia. 

The real question is...if it the meds, is it permanent??? 

And the other question, I'd be asking is, if it the meds...how possible is it change them?  I mean, I assume you need them and that other than the dementia symptoms, they working for you...so what one going do??? 

It a real bind. 

But that you progressed, speaks volumes. 

You can have dementia independently as well...and perhaps the meds make a little worse, hard say. 

I take a med for my muscle weakening autoimmune that makes my dementia progress faster than it would otherwise.  But having choose between walking and having life verses bedridden and living longer...I choose walking and having life.  I made peace with that I will die sooner. 

In short, if it is actual, factual dementia...there really truly isn't anything you can do about it.  I know people say diet and exercise...but that does no real help it, it just gives us a feeling we doing something positive....gives us a false sense of control.

What I wish you could find is a provider who'd give you Aricept...and SEE if that does no help you slow the progression.  You could always ask, say you want try it..."unless they have a medical justification no do" is the phrase I always use, tends work....I no longer remember why (LOL). 

Hang in there.  You, in ways, are like Bill....in that you want a concrete, "yes it really is this"...but in dementia, we NEVER get that (unfortunately).  What we get is the progression that eventually erases any doubts we had in the earlier stages.  I mean, all through the early stages, we ALL doubted...thought this could no be what is...but eventually, as it progresses on its expected path....eventually it adds up and we each come know for our own selves that yup, this it. 

That said, many us like forget it is what it is....and life without thinking about it.  Even so, we will lose skills and it will rear its ugly head again reminding us - yes we really do have this.  Now that I have start stage 6...I have say, the slow march my death (every skill I lose) is a soul scary reminder I really am going die soon.  I mean, no that soon...but that it coming.  Of all the peace I made letting go my life and plans...I still no know how say goodbye the baby...and I suspect that I will never find a way.

Anyways, best luck finding you answers.

<3


julielarson
Posted: Wednesday, December 14, 2016 10:39 AM
Joined: 9/30/2015
Posts: 1155


Sun honey I do take Aricept and have for over a year but yet I still progressed.. You are right if it were the medication it would not have progressed I think is what you were saying.. I am just so frustrated today that I am not fully thinking straight.. My first thing I wanted to do was to give the prescriber a call and ask her on what planet would it be alright to lose so much IQ and artistic ability and be ok with it? She is rather smug with me and others and I wish she were not so.. She is as smart as I used to be.. and maybe I am a little jealous of her for that.
julielarson
Posted: Wednesday, December 14, 2016 1:36 PM
Joined: 9/30/2015
Posts: 1155


Oh Sun my heart hurts from what you last wrote about the baby.. Big hug to you.. She will have many memories you and her made over these years and that she can hold onto.
Iris L.
Posted: Wednesday, December 14, 2016 3:25 PM
Joined: 12/15/2011
Posts: 17580


I don't understand what they mean by your memory loss might be medication related?  What medications?  If medications cause memory and cognitive loss, they should be discontinued. 

 

Iris L.


julielarson
Posted: Wednesday, December 14, 2016 3:44 PM
Joined: 9/30/2015
Posts: 1155


Iris, it is the Risperidone that they say is causing the MCI! Funny thing is I look and look online and do not find anything that says it causes MCI or memory problems.. Even in the elderly.
The_Sun_Still_Rises
Posted: Wednesday, December 14, 2016 4:43 PM
Joined: 7/24/2015
Posts: 3020


All those class of drugs are known impair memory...but this link may help you

https://www.drugs.com/sfx/risperidone-side-effects.html

<3

 

 


julielarson
Posted: Wednesday, December 14, 2016 5:14 PM
Joined: 9/30/2015
Posts: 1155


Thank you Sun. I just wish it were better reported on so I could go and find specifics on what memory problems you can have.
Mimi S.
Posted: Wednesday, December 14, 2016 5:57 PM
Joined: 11/29/2011
Posts: 7027


Julie,

It is believed there are many types and probably many many causes.  For those of us diagnosed it's, in my pinion, to worry about how.

We just have to deal with what we have.

 


julielarson
Posted: Wednesday, December 14, 2016 6:05 PM
Joined: 9/30/2015
Posts: 1155


I guess I can look at it this way that if it is medication related it will not get any worse..
julielarson
Posted: Thursday, December 15, 2016 8:46 AM
Joined: 9/30/2015
Posts: 1155


This thing with the neuro nurse practitioner has been a long time in coming.. She always has rubbed me the wrong way and it is time to move on.
julielarson
Posted: Thursday, December 15, 2016 9:01 AM
Joined: 9/30/2015
Posts: 1155


I used to be an artist, but now I am not able to do anything like I used to be able to do and it is disturbing to me. I loved being able to visualize something and get it on the canvas or using a material to make something in my minds eye.. I do not have the minds eye like I used to have and I definitely can not get things to look like what I do have in my mind to do. I talked to my prescriber about this and she nonchalantly said that artistic abilities often get disrupted with anti psychotic medications.. I can not believe it.. This makes no sense to me that this would be something I could or would give up for this medication working.
alz+
Posted: Thursday, December 15, 2016 9:21 AM
Joined: 9/12/2013
Posts: 3608


how did I miss you are an artist?

Your art may change, but if you let go of how you USED TO paint and let the new brain/mind/heart/gut fuel your creativity you might come to love it as much as the old.

I am so sorry the IQ measurement has made you feel less yourself.

Did I get my IQ measured? I don't recall anyone saying that, it was loss of function, loss of independent living skills etc.

I can't imagine the benefit to anyone or any treatment in claiming someone has a lower IQ. That seems like a dig based on squat.

The first year or 2 we spend our time figuring out how to work with our illness and figuring out what is BS from our care providers.

If I plan to do laundry I might actually paint - there is an ugly wall at bottom of basement steps and it is warm down there. I want to paint something on that wall. 

When I was young I painted double wooden garage doors with a family portrait of me, husband at time, dogs, cats and kids! I was so free of measuring myself against any other scale.

go forth and paint the heck out something! First step is cracking the resistance to doing something in a new way, go for it as soon as you can! Life awaits, open the door a little at a time.


julielarson
Posted: Thursday, December 15, 2016 10:21 AM
Joined: 9/30/2015
Posts: 1155


Back to my prescriber.. She says that I never say that I forgot what I was talking about and do not seem demented because of that. I have heard the same thing from my therapist too.. That is not the only way dementia shows itself. Duh.. we all know that.. LOL! I feel like these people think they are experts on how I am functioning and do not really listen to me. I also hear that it is the fear  of dementia that is getting at me and why I am stuck where I am... I know that this is only particially true and that there are other reasons for being stuck and one of the reasons is that it is hard to work through what they are saying about something I am experiencing.
Iris L.
Posted: Thursday, December 15, 2016 12:45 PM
Joined: 12/15/2011
Posts: 17580


julielarson wrote:
Back to my prescriber.. She says that I never say that I forgot what I was talking about and do not seem demented because of that. I have heard the same thing from my therapist too.. 





Julie, I heard the same thing from the psychologist who visited me for over a year.  She works only with older adults over age 60 years.  I was astounded that she didn't know better.  


Julie, one thing you will have to accept is that the majority of the public including professionals know absolutely NOTHING about the signs of early dementia and cognitive impairment, nor what to do about it.  That's why I caution members with early dementia/cognitive impairment about consulting professionals like that.  They can be more damaging to our psyche than helpful.


Iris L.


julielarson
Posted: Thursday, December 15, 2016 1:17 PM
Joined: 9/30/2015
Posts: 1155


Iris, this and other .. Many other reasons why I am glad to be here amongst you all..
julielarson
Posted: Friday, December 16, 2016 8:31 AM
Joined: 9/30/2015
Posts: 1155


Well now I have done it.. wish me luck guys because I simply forgot to put the things on the faucets outside that keeps the cold out and I may have frozen pipes.. I hope not.. I guess Jay's thing of waiting until I have told him we need to do something are over because I do not always remember the safety things we need to remember..
julielarson
Posted: Friday, December 16, 2016 9:08 AM
Joined: 9/30/2015
Posts: 1155


Today is the day I go and ask to be refered to the Brain Institute. Wish me luck!
Iris L.
Posted: Friday, December 16, 2016 9:33 AM
Joined: 12/15/2011
Posts: 17580


Best wishes on your referral to the Brain Institute, Julie!  What a great name for a clinic!


Julie, lists will become your best friend.  Every time you have a moment, make lists of things you need to do, such as daily, weekly, monthly, or seasonally.  I call my notebook with my lists "my other brain."  Every week I make a list of To Do This Week, then every night I write out what to do for the next day.  This really has been a great help to me!


Iris L.


julielarson
Posted: Friday, December 16, 2016 11:00 AM
Joined: 9/30/2015
Posts: 1155


Iris, this is a wonderful thing to do.. make lists.. I am afraid that it may not have helped me with the faucet outside though because I had mistakenly thought that I needed to keep the one just outside the front door hooked up to water the plants out there all winter... I am apparently not thinking clearly either on top of everything else.
Iris L.
Posted: Friday, December 16, 2016 11:56 AM
Joined: 12/15/2011
Posts: 17580


Julie, you are still thinking clearly, you are just forgetting.  That's why it is so important to write things down.  The simple act of putting pen to paper will jog your memory.  If necessary, do an online search for "how to prepare a house for winter."  A lot of tips will come up, and you can choose what is appropriate for your home, and add it to your list.  The main idea is to know that you can still function with accommodations.


Iris L.


Rightmind
Posted: Friday, December 16, 2016 12:42 PM
Joined: 5/19/2015
Posts: 11


Julie, I can relate to you wanting to go to the brain institute. Some of us who are deep thinkers need to keep trying to pin down definitive answers for what is going on.am currently seeing a neurologist aand researcher at University of Michigan.  I always think I know better what is going on because I was always a logical thinking person. With this condition, logic doesn't work most of the time.  I HAD to find someone who I thought knew more than me (I know, but I was a teacher you know lol) and this Dr. was one of the best in Michigan in this area.  It makes me more accepting of this diagnosis knowing that I went to a doctor that has a lot of experience. Keep trying until you find someone you feel comfortable with. It sounds like the Brain Institute might be the place to find the answers.
julielarson
Posted: Friday, December 16, 2016 3:07 PM
Joined: 9/30/2015
Posts: 1155


Iris you are onto something but let me explain a little bit about why I said it was more of a problem than just writing it down.. You see I am the person who always thinks of the worse case and it happening.. Well in this instance I not only did not think there was a problem with leaving the outside faucet uncovered but I had a reason for it.. I would need it to water some plants out there and so it never occurred to me that my plan has a major hole in it.. The cold is the hole and darned near cost us some money if the pipe had frozen. I found when I got home that it had not frozen and I could cover it with no problem.. The problem is if my attitude of always being on top of the things that could go wrong is not in operation I am in trouble because Jay does not think of these things and things like this can happen.. I will write my seasonal to do list though.. It could come in real handy in the future.. Thanks Iris..

 

Rightmind yes I need an expert.. I need one badly. There are way too many opinions on what is going on from people I have helping me now and need someone to say this is what it is and this is what we are going to do about it or there is nothing we can do about it but we will be with you in this. The Brain Institute is a good place for me to go.. Thanks so much!

 

 

 


julielarson
Posted: Friday, December 16, 2016 3:09 PM
Joined: 9/30/2015
Posts: 1155


Alz, I am voting for the bug in my brain and I am hoping they will remove it.. LOL!
Iris L.
Posted: Friday, December 16, 2016 4:19 PM
Joined: 12/15/2011
Posts: 17580


Julie, I know exactly what you mean!  I too, used to look out for all possibilities and worst case scenarios and how to avoid them and what to do if disasters happened.  Unfortunately, I can't think of an example now.  My long term recall is diminishing.  I'm getting ready to go to the library.  They have Feelgood Flicks on Fridays.


Iris L.