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Nervous.
julielarson
Posted: Friday, December 16, 2016 4:24 PM
Joined: 9/30/2015
Posts: 1155


Cool, enjoy!
grandmalynda
Posted: Friday, December 16, 2016 5:08 PM
Joined: 12/3/2016
Posts: 374


Enjoy your evening at the library Iris!

--Lynda


Iris L.
Posted: Friday, December 16, 2016 9:04 PM
Joined: 12/15/2011
Posts: 17888


It was a feel good movie, called Fred Claus.  I can recommend it--it's not stupid.


I thought of an example.  My condo mailbox is out of order, so we are supposed to go to the post office to retrieve our mail.  After the movie, I did go to the post office to drop off a sympathy card, but I forgot to ask for my mail.  Oops!  I'll go back tomorrow.


Iris L.


julielarson
Posted: Saturday, December 17, 2016 9:29 AM
Joined: 9/30/2015
Posts: 1155


Yes there is always tomorrow.. thank goodness.
julielarson
Posted: Saturday, December 17, 2016 9:36 AM
Joined: 9/30/2015
Posts: 1155


Well I got referred for the brain institute and I had the information all wrong and who knows who is going to get ahold of me.. I thought it was the Layton brain institute but it is not... It is the Layton Alzheimer's and dementia.. It will go to the right people but still.. I had it all wrong.. and I found out that my doctor still thinks I have Parkinson's and I forgot to tell her that that was related to my medication.. Those symptoms are long gone due to a medication being added. So this should be fun.. I should hear from them in a few weeks..
Iris L.
Posted: Saturday, December 17, 2016 1:44 PM
Joined: 12/15/2011
Posts: 17888


Julie, I have an idea that may help you.  I keep a notebook just for my medical appointments.  In it I write down questions for my doctors, what happened at each appointment, what the doctor's recommendations are, tests ordered, and the next appointment.  I also keep contact information for my various doctors.  Having this notebook specifically for medical appointments has helped me tremendously.  You might want to look into something like this for yourself.

Iris L.


julielarson
Posted: Saturday, December 17, 2016 2:02 PM
Joined: 9/30/2015
Posts: 1155


Iris, yes I need to start doing just that.. I have a notebook that I can use for this purpose. Thanks.
julielarson
Posted: Saturday, December 17, 2016 6:18 PM
Joined: 9/30/2015
Posts: 1155


Today I decided to ask the pharmacist about the Risperidone and memory loss as a possible side effect and I heard something very interesting from her.. She said that of all people taking it 1% have memory loss. This is something my prescriber has not told me and this is one of the reasons I am going to go to a different prescriber staring next month. That is not a high percentage and I am wondering if I am actually in that 1% or if it is actually something else causing this.
Iris L.
Posted: Saturday, December 17, 2016 8:43 PM
Joined: 12/15/2011
Posts: 17888


Yes, according to my search, the pharmacist is correct.  The way to tell if Risperidone is the cause of your memory loss is to have a trial period off the Risperidone.  You can discuss this with the prescribing doctor.   Were you having significant memory loss before beginning Respiridone?  Read and learn about your medications from different sources, and then you will be able to discuss your response to them intelligently with the doctor.


Iris L.


julielarson
Posted: Sunday, December 18, 2016 6:00 AM
Joined: 9/30/2015
Posts: 1155


Iris, yes I was having memory problems before the Risperidone but I was on a different atypical antipsychotic when that was going on. I seem to remember having these troubles after being on that medication for about two years and you would think that memory problems would have showed up before that. I will talk with my new prescriber about getting taken down and off the Risperidone to see if it is the problem.. Thanks.
The_Sun_Still_Rises
Posted: Sunday, December 18, 2016 7:03 AM
Joined: 7/24/2015
Posts: 3020


Julie, it no just exclusive dementia, ANYONE who have something wrong them wishes for a finite and definitive answer from their medical professionals.  Indeed, we NEED it.  However, this a mis-perception, and no only are they human, many no all that smart, and the sole of their job is matching symptoms with rx's - they guessing, always.  They have training try look confident as they guess.  And 5 different professionals will tell you 5 completely different things with confidence they right. 

The best you going get, especially with something like dementia (that they literally know nothing about like why it happen, if it happening, or how help), is a kindly person who LISTEN you...and who help you toward dx if they can see that this will help you get services. 

I know I wanted an exact answer my dementia, as have most others who have come on here, and I want a more exact answer the baby's autism....like someone tell me WHY she have trouble go outside, and what I can do about (like with medical terms). 

But the best we get is it looks like this, this the treatment we do.  The rest left entirely up us. 

No one will recommend someone with mental health issues, who being helped by a medicine, go off it...and they will generally take most side effects as par for the course.  For them, you memory loss negotiable.  It is for YOU, that the questions are - IS it negotiable you?  Can you live with the memory loss for the help you get???  Or, is it worth a trial off it??  Do you have the personal and mental health support be off it???  ONLY YOU can answer those things...and ALL professionals will wait YOUR guidance on that. 

But Iris right, the way you see if it the medicine is you go off it a while (like a month), and see.  You will need medical help and support do that.  And you will likely need be the one lead the way that. 

The problem with the stigma of mental health and dementia - is that subconsciously, they have already written one off as a lost cause in many ways, so it more than normal up you save you self, unfortunately.

However, you a smart cookie, and you do you research....and in many ways you know as much about what going on for you (if not more) than most doctors you will ever encounter.

Anyways, best of luck with you new appointment place....hope it goes well. 

Please remember, in the end, you are only human...and you can only do the best you can do at any given time...please let that be enough.

<3


julielarson
Posted: Sunday, December 18, 2016 7:47 AM
Joined: 9/30/2015
Posts: 1155


Sun, I am going to make an appointment with the new prescriber to see if we can talk about doing a trial off the Risperidone to see if it is causing the problem or not.. I am scared of doing this as the symptoms I get when not on this medication are pretty hard to take but I will see if there is another med  that I can switch to that will help me.
The_Sun_Still_Rises
Posted: Sunday, December 18, 2016 10:01 AM
Joined: 7/24/2015
Posts: 3020


I can completely understand you nervousness with that, and you have my complete sympathy in this. 

I wish medical stuff was easier navigate...and we did no have get education in order educate our providers, but such is life. 

<3


Iris L.
Posted: Sunday, December 18, 2016 1:05 PM
Joined: 12/15/2011
Posts: 17888


Julie, unfortunately the diagnosis of the dementias can be confusing and not readily apparent at times.  It may take some time for a pattern of signs and symptoms to develop and be consistent enough for the specialists to formulate a diagnosis.  That's why it is best to see the most experience specialist you can find.  Since you are going to a brain institute, I hope you can be evaluated by a marvelous specialist who will take your history into account.


I don't know why you have been on an anti-psychotic for two years.  Medications cause side effects, and sometimes doctors treat side effects with more medications, which in turn, cause more side effects.  The patient can get into a cycle.  A principle of medical practice is to use as few medications as needed to treat the primary complaint.  Please think about what was your primary complaint, and is it being treated?  Work closely with the specialist, and eventually you will come to a satisfactory conclusion and plan for treatment.


Iris L.


julielarson
Posted: Sunday, December 18, 2016 2:03 PM
Joined: 9/30/2015
Posts: 1155


Iris, yes the medication does an extremely good job of taking away the symptoms I was having before the med was introduced. So it works.. but maybe it takes away my memory and that can not be good.. I want to be able to do my artwork.. I used to be an artist. and I loved that part of me. I miss the process that used to take me more or less transport me to a timeless place where nothing mattered because my hands and my brain were one and made things that made me happy. Now things do not work that way at all, my hands are shaky and not as nimble as they once were. My brain does not concentrate as well as it used to and makes working with attention and sustained focus impossible now. The way she said that yes creativity can be taken away with the treatment of my symptoms like it was nothing really lit a fire under me to find someone else a priority. This was a huge part of me that is gone either in the name of treating an illness or is gone due to an illness.. One I will work with the other I will seek to change.
Iris L.
Posted: Sunday, December 18, 2016 2:56 PM
Joined: 12/15/2011
Posts: 17888


I know what you mean, Julie, when someone that you go to for help, seems to be dismissive of what is so vital to your self-esteem.  It is very demoralizing and destructive.  I spent a long time feeling bad about myself while under the domination of a psychologist.  I never will allow myself to be in that position again. This is why I want to warn people about psychologists and other therapists.  They can be destructive to your well being. Not all, but if it happens to you, it can be devastating.  How does one recover?  It has taken me a lot of work on my own to recover from the damage that was done by the psychologist, and I still am not fully recovered.  I do my best to maintain my own self-esteem despite slings and arrows from others.


Iris L.


julielarson
Posted: Sunday, December 18, 2016 4:16 PM
Joined: 9/30/2015
Posts: 1155


I am a bit upset right now because I am just doing a run down of all the things my prescriber has over looked or told me that are just the way things are.. First there is the MCI and then there is the Parkinson's like symptoms I had and now is the loss of my self actualization through artwork.. That is a lot to deal with when it comes to a medication.. I just can not believe that someone could just look the other way when there are I am sure more medications out there that will not cost me so much..
The_Sun_Still_Rises
Posted: Monday, December 19, 2016 6:47 AM
Joined: 7/24/2015
Posts: 3020


Pretty much all the new classes of antipschs cause Parkinson's like symptoms and memory issues....and worse, they can be permanent.  You may consider the older class of drugs.  Also, we finding in the autism community...those who do medicate, use extremely low doses of things like prosac (like non-clinical doses) start with.  You may consider wanting try the same...so that you can be on the lowest dose necessary for improvement symptoms, hence minimizing possibility side effects. 

They, I think, consider the side effects negotiable...like, if someone going kill themselves, maybe a tremor and memory loss no so bad? 

They can only look at THEIR values...as your are unknown them. 

YOU have consider your quality of life....and unfortunately, only you can decide that for you self.  I have said before and I will say again, I have much compassion and sympathy for you position of a rock and a hard place....and there no judgment either way you choose. 

For you own sanity and well being, however, you will want make a decision for you self...and just embrace it. 

I am no sure if I shared with you, my muscle med makes my dementia worse and progress much faster....but I can walk and I have energy and can do things.  I also had make a tough choice.  I chose some great life, even if shorter.  I have embrace that decision...and I never looked back.  But it do suck when you standing in place of having make that decision....because how can you choose, really?  You can't....so you just have pick, and make it ok. 

We will be with you either way.

<3


julielarson
Posted: Monday, December 19, 2016 6:58 AM
Joined: 9/30/2015
Posts: 1155


Thank you Sun!
julielarson
Posted: Monday, December 19, 2016 4:19 PM
Joined: 9/30/2015
Posts: 1155


I went to occupational therapy today and was told that if the MCI is medication related Occupational therapy will not help.. I also asked my dad about when he had his heart valve replaced because that was the same year I went on antipsychotic medication and that was over 10 years ago.. That means that my memory issues showed up a good 5 years after starting a antipsychotic medication and I would think that that would be weird for it to be that long and not have any symptoms and all of a sudden starting to have them and to say it was medication related might be wrong. Also she gave me the same test she gave me two other times and I had gotten better at it.. LOL! I told her I had memorized it. I called the same teaching hospital that I am hoping to go to for the MCI for getting a prescriber for my medications... I figure why not get with people who will likely talk between them to best help me.
Iris L.
Posted: Monday, December 19, 2016 7:58 PM
Joined: 12/15/2011
Posts: 17888


Julie, were you able to establish goals with the OT?

Iris L.


julielarson
Posted: Tuesday, December 20, 2016 6:20 AM
Joined: 9/30/2015
Posts: 1155


Iris, no not really other than learning again how to tie a knot... It really was not all that helpful to me right now for some reason.
The_Sun_Still_Rises
Posted: Tuesday, December 20, 2016 7:17 AM
Joined: 7/24/2015
Posts: 3020


Wow...

That said, you likely get the same response re dementia....as the entire world it seem think there nothing you can do help us. 

OT should be focus on YOU daily tasks that YOU find challenging.

Where I live, we have the Courage Center...which is the place that first got people wheelchairs play basket ball.  They a different breed OT and PT...and they stay working with you as long as you keep improving.  I wish this for everyone. 

I have also had bad luck everyone else.  Earlier this year, my nurse who set up my meds recommended in home speech therapy (I have been waiting year for this and in hope of it leading assistant technology), but I get lady who no understand Aphasia...and first day she ask me say a word I can no say...and I do no know what wrong my brain that I can no say or make jaw move that word, but I can no...it just hang there....anyways, because it a simple word and she can say it, she get very upset me and walk out saying I don't need speech therapy - ouch!

No one used treating people dementia - you need know that.  When we seek treatment, we are cutting NEW paths where none exists.  In ways, we have develop a thick skin and a lot of intenstinal fortitude do this.  For me, I try keep in mind all those dementia who going come after me...that will generally keep me going when it get tough and people no so kind.

Again, people used the 80 year old invalid drooling idiot led around by a child at appointments....and patting our caregivers on the hand.

NO ONE thinks about us...or the quality of life we still want be have. 

A dementia dx is a write off by the medical community...a way shut the door on us.  And once we have it, nothing we say valid ever again.  It the worst kick in the pants....and the largest injustice...a real mind fuck.  There just no way soften the blow.  Sweet people like you walk in there and sweetly and innocently expect them care like normal people should...only find out again and again, dementia a whole different planet.  It surprises, and shocks, and hurts EVERY TIME...no matter how much you know it the way it is.  I know it gets me every time.

Hang in there.  Women are amazing creatures...somewhere, from wells so deep no one knows where they spring from, we find the strength keep carry on. 

<3


julielarson
Posted: Tuesday, December 20, 2016 7:22 AM
Joined: 9/30/2015
Posts: 1155


Oh yes Sun I can relate to this right now.. She said from the results of the repeated test that my case is mild .. LOL! Lets see her face the declines I have and take a repeated test and see how frustrated she becomes.
Mimi S.
Posted: Tuesday, December 20, 2016 8:13 AM
Joined: 11/29/2011
Posts: 7027


Julie,

It's not the frustration with the test.

Please do concentrate on the things you can do.  We know what we have and we participate to our fullest ability in Best Practices. That's what we can do.


julielarson
Posted: Tuesday, December 20, 2016 8:24 AM
Joined: 9/30/2015
Posts: 1155


Mimi at least I can memorize a test.. LOL!
julielarson
Posted: Tuesday, December 20, 2016 10:02 AM
Joined: 9/30/2015
Posts: 1155


In all seriousness, what am I to do if this all turns out to be caused by my medication? I have come to know all of you and appreciate all of you for your wisdom and love of your fellow man. The idea that I will not have a reason to come here anymore strikes me as kind of sorrowful really. You all have become a big part of my life.. It is not that I would want to have the problem just so I can come here but the thought of not makes me sad. Big hugs to you all.. I will for sure keep talking to you and keeping you up to date on what is going on... Hugs again.
jfkoc
Posted: Tuesday, December 20, 2016 4:04 PM
Joined: 12/4/2011
Posts: 20698


I found  our pharmacist was an important part of the "team" for my husband. She told me about drugs.com. I printed off what was available for each drug then entered it into their tool that checked for interaction. It turned out that there were two drugs that did have a strong interaction. Dr. never picked up on it. Scarey!
The_Sun_Still_Rises
Posted: Tuesday, December 20, 2016 11:51 PM
Joined: 7/24/2015
Posts: 3020


julielarson wrote:
In all seriousness, what am I to do if this all turns out to be caused by my medication? I have come to know all of you and appreciate all of you for your wisdom and love of your fellow man. The idea that I will not have a reason to come here anymore strikes me as kind of sorrowful really. You all have become a big part of my life.. It is not that I would want to have the problem just so I can come here but the thought of not makes me sad. Big hugs to you all.. I will for sure keep talking to you and keeping you up to date on what is going on... Hugs again.

------------------------------------------------------

First of all....let me be the first say, you are absolutely WELCOME come here even if it IS all just meds.  The bulk majority of the people active on the young onset section do no have dementia....and they here.  Memory loss be memory loss.....if the things (tips, tricks, support) here help you - come, enjoy, and help others. 

Secondly, I want tell you that you providers are trying tell you in the kindest way, that only PART you memory loss could be caused medication.  That doctor speak for you have dementia but we so sad we can no tell you that. 

Third, you can trial no take med....but even so...you only have a 50/50 chance improve IF it were the med, as that side effect can be permanent...in which case you still have memory loss you still have live with. 

Fourth, I am touched and much appreciative of you mentioning and acknowledging this as per normal social protocol....as it, sadly, is often ignored.

Fifth, in all likelihood, per you progression - you actually have early stages dementia....and you bid have it all be just the med is likely a protective action you part.  My understanding is med interfere with memory...but no cause it keep decline.  I no expert that, but the decline a significant feature. 

No one can make, or even ask, you come terms this....but out of love you, we can hope for you sake you consider just trying on the sweater a while....seeing f it do no fit? 

Lastly, people with declining function understand something that others do no....we have access something others do no have access.  The pathways we HAVE take...are no their pathways.  There will always be those who no have decline saying this and that...but they no know.

As someone who have experienced a lot decline over the last 7 years, I personally welcome another who likewise do...because, maybe we can learn from each other and be a little more ahead than without each other.  But that just me. 

So please, do no feel like you can no be here.  And if you do, you should private message me and we can share emails and even phone numbers if you want, I would be happy stay contact you. 

<3



julielarson
Posted: Wednesday, December 21, 2016 7:51 AM
Joined: 9/30/2015
Posts: 1155


Thank you Sun, I will stay here and I am sure that you are right about the progression.. This feels like a new road to be on and no one knows how to navigate it with me besides you all here.. Those on the outside have no idea though and that is rather disconcerting.
julielarson
Posted: Wednesday, December 21, 2016 10:43 AM
Joined: 9/30/2015
Posts: 1155


I am not all that convinced it is medication related anyway.. because I was on Zyprexa for 8 years and no problems and then all of a sudden in 2011 I started having memory issues.. I did a time line of what happened when because I was really curious about what was really going on. The Risperidone and the Zyprexa are the same class of medication too.
The_Sun_Still_Rises
Posted: Wednesday, December 21, 2016 10:52 AM
Joined: 7/24/2015
Posts: 3020


Phew....as I have been real enjoy you company. 

Of the long time members, Alz+, Michael, and myself have the most progressed dementia/Alz.  There are a lot newcomers be dx'd it now as well.  My experience has been that there no much support for the advancing...and we are a little understood, valued, or appreciated here as the rest the world...again, that just my experience.  Again, sort of the chicken hen peck thing...but whatever. 

I try do my part keep this a safe place talk about what it really like have this (for reals)...the ups, downs, insights, joys....and the hard things, like talking end of life choices and options.  All this, make the rest who no have this, uncomfortable....and they still seek shut down discussions. 

Some who do no have dementia, like act as though they do and speak for us....like they know, and control things for us...but because they no facing their death sentence - there just so many things they do no know, nor could ever know until they there. 

The two facts dementia....and it ALWAYS true all - is that it progressive (so if you no progressing, you do no have dementia), and it ultimately fatal.  That progression open you up an insight a world that no others (but fellow progressors) have.  We have ALL been there, we all still there in many ways. 

Just remember that the people here are all mixed and varied, they come with varying degrees of insight and ability understand what others truly going through.  Do no be put off by many the mixed messages you may get on here.  Sometimes in the world, you simply have make you space and let others adjust around you. 

Michael mostly silent these days, and Alz+ comes and goes as do I....but they are great resources what like live with this a while.  Alz+ and I are similar in stage dysfunction, so when I am real scared by new progression...I always think of her....she seems keep plugging along despite the yuk life throw at her....and she still here, and she still manage come up with this grace and beauty and spiritual insight.  It lets me know it no all over yet. 

When you new dx'd....and when you seeking dx...you in a certain space...but that space does no last forever, eventually time pass and you become a vetran this. I am fairly sure, if you no find a new neuropsych person this year, then next year you will be get you dx.  But you do no real need a person or piece of paper tell you what you already be know. 

Anyways, much love...and I glad you presence here....and you insight, intelligence, and continual pursuit of answers.  Who knows, maybe because of you...we will get a step farther in understanding all this? 


julielarson
Posted: Wednesday, December 21, 2016 11:19 AM
Joined: 9/30/2015
Posts: 1155


Sun I love you! You are a special person and I always appreciate your writing on these subjects.
julielarson
Posted: Wednesday, December 21, 2016 3:53 PM
Joined: 9/30/2015
Posts: 1155


Wow, so this teaching hospital is so popular that I can not have an appointment until next September.. I am on their waiting list though so it may be sooner.. I am going to a different Neurologist though in the mean time. I never really liked how I was treated at the other place so this will be a good change I think. I was not prepared to have to wait this long for the appointment but I do understand it. I got a lot done today. I made my orange cranberry bread and I vacuumed all the floors.. Kitty has been especially cuddly today and so I have been holding him a lot.. I love Christmas and I wish to go to a mall just to feel the excitement and see all the decorations.. I thought about asking Jay if we could go but I did not do it feeling a bit silly about it really. How is everyone else?
The_Sun_Still_Rises
Posted: Wednesday, December 21, 2016 7:17 PM
Joined: 7/24/2015
Posts: 3020


Oy that is a LONG wait!  You may try a few other places while you wait it. 

I wish I lived nearby, I'd be happy take you mall and all the fun stuff. 

The bread sound nummy.

I had errands do this day....and indeed all week this week.  The stores soooo busy, you can no walk without having constantly stop and wait in line get something on shelf - everything need get.  Long lines, full lots.  But I FINALLY got it all done.  I got dog's nails cut this day.  I had go some place copy a dvd (we had made during summer of all the family's old home movies) for all my sibs.  I tried do on computer...but it would no work.  Did at an amazing place, and was real astounded!  I had put pictures in - you have be do online now - and it took all week me get them ready and figure out the upload stuff - but submitted them late last night and Target had them ready me this morning - so I picked those up (we putting a bunch picts baby in big collage frames my mom).  My mom so cute, as I have be clean out her place...I put up more and more pictures for her, her family.  As she go for nap and bed, she have look at each one....like she wishing each person well - it so adorable! Then I had grocery shop....it was last my list.  We got a Norfolk pine my mom.  Then, because it warm this day and perfect snowman weather (and because I asked mom do it when baby nap, but of course she could no be bothered) so I built a snowman for baby.  Hopefully it will no melt for Christmas. 

Then we forced the baby take a bath.  We did our best be encouraging, but she was no buy it...so we made her.  She would no left us wash her hair 2 months.  We tried get waterless shampoo....but it did no real get the grease out.  Anyways, her hair washed - I am soaked.  My back screaming from all the in out car. 

Now I have buckle down and sew.  I have been putting it off...I am no sure why.  I do no see as well anymore and my fingers very clumsy....so it much harder me do. 

I spent this whole month overwhelmed, sure I could no do half what I did....I always very surprised what I can do....but until the magic making those days - my work done!  Phew! 

Now I get enjoy baby....who have seem forgotten she love play me.    I sure she will warm up again....I can no wait. 

<3