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This is my full story.
julielarson
Posted: Tuesday, December 27, 2016 5:00 PM
Joined: 9/30/2015
Posts: 1155


Some of you may not like me after this but here goes. I think it all fits in with what has been going on for me and so I am here to tell it.. I told my doctor that I was having memory problems and so she referred me to a neurologist and he said he thought I had ADHD upon first meeting me. I thought that that made him an asshole.. I also thought that I would have to face that again after being told that I could not have a test for ADHD because I already had enough wrong with me when I talked to a counselor at the community college about getting tested for that. I do not know why it scared me that he said that but it did. This was too different even for me and my brain that sometimes cooperated with me and sometimes did not. For the most part it cooperated with me enough to get a degree late in life. What I was experiencing now was different. It was not knowing how to do my job that I had been doing for 8 years as an apartment manager, it was not knowing words to say to people when talking to them. It was a brain that seemed to be running all the time but not much getting produced from all that running. I got tested and got the diagnosis of MCI.. Ok I really did not know what that meant but I did know that my first impression of what I was living with as not being right for me for two years was correct. I do not know why but I put all of it behind me once the testing was done. I hid from it. I let it be. I moved on like you can really move on from something like this. I put in a stellar effort and kept my head down and tried to do my job despite all my difficulties. Well that worked for quite a while but then I noticed my anti depressant was not working and for some reason I decided to change doctors mid stream and went to that doctor who said that he did not feel comfortable prescribing mental health meds but agreed to prescribe me this time but I needed to find another prescriber in the mean time. He prescribed wellbutrin and it was a mess from the beginning and I all of a sudden knew what it was like to get into a place where nothing I was taking for mental health was doing it's job. I had paranoid feelings and I had weird thoughts about killing my tenants and myself and not wanting to do that led me to try and take a bunch of ibuprophin and call 911 and they came and carted me off to the hospital, where they learned that I had a problem with my sodium levels being too low. I had to explain to Jay why I was there and I was a mess. I did not want to have those thoughts and I was truly scared of myself at that point. I stayed in the hospital for two weeks and they put me back on the original antidepressant and on a different atypical antipsychotic. I started out low and it worked enough for me to be discharged but still I had the messed up feelings and soon the thoughts came back. I just could not get my footings back. I was strung out all of the time hiding in my apartment barely doing my job. I started having those thoughts again and I went to my therapist and I told her I was not doing well and I told her what was going on. I told her I was feeling vulnerable and that I really did not trust myself. So back in the hospital I went and this time they started raising the antipsychotic and I started feeling better but not well enough to be out. They sent me someplace else and the doc there gave me a higher dose of the antipsychotic and I started doing much better. I was still a mess. I did not note that I was under an extreme amount of stress from the job I was doing and that I was struggling with the MCI too. I got out of the hospital and went back to do my job. I forgot to mention what I did for a living and that is important.. I was an apartment manager and felt all kinds of responsibility to my boss and tenants. At one point I had to go to an apartment to find out what could be making the fuse box buzz. I found out that they had electric heaters plugged in and I called my bosses assistant to tell her what was going on which had become my way of handling everything going on.. I would call her for almost every thing I needed advice on.. Which was just about everything those days. She told me to make sure that they unplugged those heaters because they are fire hazards. So I ran up there and I told that they had to unplug them and I had to make sure they did. I  did that and then ran back down to call my bosses assistant and I told her they were unplugged and she asked why they did not have their heat on and I had seen that they had furniture up against their heaters.. I had to run back up there to make sure they pulled everything away from their heaters so they could turn them on. I had turned their heat on at that point and I went back home. Well I went up there four more times to make sure they did not have their electric heaters plugged in.. I knew I should not do it.. I told myself not to but I could not help myself.. I would put on my boots and run up there time and time again. I could not settle down and realize that those poor people had had enough of me for that night and maybe for the rest of their lives. Jay even told me to stop but I could not stop.. I had to do it again.. I had to ask them if they unplugged those heaters and knew not to run them ever. After that night I would call one of them and I would ask her. They wanted the name of my boss and the number to call her so that they could talk to her. Scared me to death because I knew I would be fired if the office found out what  a mess I was making of the whole thing. I did not get fired but it was only about 4 months before  I quit and moved us out of there before we had to go through anymore of that. I struggled time and time again with communicating with people even months later. This is my story and I am sticking to it. LOL!
julielarson
Posted: Tuesday, December 27, 2016 6:54 PM
Joined: 9/30/2015
Posts: 1155


I now live a stress free life out in the country on my meds with MCI.
Iris L.
Posted: Tuesday, December 27, 2016 7:21 PM
Joined: 12/15/2011
Posts: 18357


Julie, your story reminded me of things that happened with me in the early years of my illness that I had forgotten.  I want you to do a search for "major depression with psychosis" because part of the diagnosis includes cognitive impairment.  That diagnosis was given to me at one time, years ago.  See if you recognize any of the symptoms.


For some people, it can be very hard to make a distinction between purely dementia and other overlapping diseases.  The main thing is the treatment.  Doctors address the treatment of both symptomatically, since there is no cure.  In the meantime, many PWDs seek out alternative treatments.  There are alternative treatments for depression.  We just have to keep plugging along and keep searching, until we discover what works for us.


I have learned the most about depression from reading these message boards and other sites on the internet, and from a few books.  I don't think it is wise to rely totally on professionals, because they have limitations.


Why would you think people would not like you after your story?  It's your story--own it!  Everyone has a story.


Iris L.


TayB4
Posted: Tuesday, December 27, 2016 7:24 PM
Joined: 8/8/2014
Posts: 886


Julie,

I can't imagine how someone wouldn't like you after you so bravely told your story here. I have great respect for you and am so glad that you were able to get help for the dark thoughts you were having. 


julielarson
Posted: Tuesday, December 27, 2016 7:25 PM
Joined: 9/30/2015
Posts: 1155


Iris I thought about that whole thing of people not liking me after I told my story but I think what it is really about is I do not like the part where I was sick enough to think that I could hurt anyone. Thanks.
julielarson
Posted: Tuesday, December 27, 2016 7:32 PM
Joined: 9/30/2015
Posts: 1155


Thank you Tay!
The_Sun_Still_Rises
Posted: Tuesday, December 27, 2016 7:36 PM
Joined: 7/24/2015
Posts: 3020


((Hugs))....just ((hugs)). <3

We count so much on our brain...I truly do no believe one can understand unless they been there just how terrifying it is when you brain no do what you count on it do...or how real and truly overpowering those messages are. 

You here now....that all that matter. 

Also, I just want again say that FTD have a behavior variant...and although there are some typical behaviors docs uses hear about like suddenly having sex everyone or spend all you money and then some...I would also give serious thought and weight that doctors more often than no, dismiss women's issues as depression, anxiety, or other mental health thing and NOT really look at it.  And we women, in turn, once hear a dx....often start live in it...see everything in terms it...and likewise dismiss those things outside it.  It a cycle that ends up delay us dx.  I wish there more FTD people here....but they have such an awesome support group, I doubt they'd bother be here. 

I am no try suggest that you or the other lady have FTD...just trying say maybe think about try that sweater on a moments see if it fit and see if it no answer some you questions. 

Lastly, the brain an amazing thing....but it just a computer, an amazing computer, and it do many great things (even deep in dementia)...all computers mess up here there...but we love them anyways.  But our soul no our brain...so I try no take personal what the brain do. 

<3


julielarson
Posted: Tuesday, December 27, 2016 7:48 PM
Joined: 9/30/2015
Posts: 1155


Sun thank you so much for sharing that story with us.. I thought that my inability to get myself to stop going up to that apartment time and time again strikes me as something a person with BVFTD might do.
Michael Ellenbogen
Posted: Tuesday, December 27, 2016 8:16 PM
Joined: 11/30/2011
Posts: 4384


 It was brave of you to share all this and I am glad you finaly got the help you need. It was good that you knew to get help. Something’s are just hard to figure out but we cannot give up.

 


Joy40
Posted: Tuesday, December 27, 2016 8:30 PM
Joined: 11/23/2016
Posts: 21


Thank you for sharing.
Iris L.
Posted: Wednesday, December 28, 2016 2:17 AM
Joined: 12/15/2011
Posts: 18357


Julie, you had thoughts in your head but you did not act upon them.  I too had bad thoughts, but I did not act upon them.    You are reminding me of those thoughts, because I had forgotten all about them.


Did you get a chance to review that diagnosis that I posted?


Iris L.


julielarson
Posted: Wednesday, December 28, 2016 3:16 AM
Joined: 9/30/2015
Posts: 1155


Iris, I read about it and it sounds just like me. I think my diagnosis that I carry is not correct and that this fits more in line with what I experience. I thought about it about a week ago that my condition is Major Depression with psychotic features and not schizoaffective disorder with bipolar features. This explains why I could go for years with only an antidepressant with no problems.
julielarson
Posted: Wednesday, December 28, 2016 3:17 AM
Joined: 9/30/2015
Posts: 1155


Joy thank you for reading!
grandmalynda
Posted: Wednesday, December 28, 2016 11:49 AM
Joined: 12/3/2016
Posts: 374


Your are so courageous Julie.  Like you I also deal with mental health issues.  I really appreciate you telling your story, it will help many know that they are not alone.  I have a new psychiatrist that I will see again this Friday.  She seemed to be understanding about the alzheimers dx, but I want her to look into it further and make sure I am being properly dx.  I will be getting a new neuro next month.  I hope to get the two working together to help me get the correct dx and get me on the correct meds.  Best wishes to you for a happy and stress- less life!

THanks to you and many others on this board I will go to these appointments armed with much more info than I had before.  It is damn well time for me to be proactive about my future.  I'm ready!!  Again, thanks so much for your courage and honesty.

--Lynda


julielarson
Posted: Wednesday, December 28, 2016 11:57 AM
Joined: 9/30/2015
Posts: 1155


Lynda you are welcome and really we have Canada to thank for my being able to be so open.. She has helped me in so many ways..
Iris L.
Posted: Wednesday, December 28, 2016 12:34 PM
Joined: 12/15/2011
Posts: 18357


Julie, for six years I consulted an excellent psychiatrist, but he never mentioned major depression with psychosis.  In fact, his diagnosis for me was atypical depression.  I didn't learn about major depression with psychosis until after I joined this board, and began researching different topics about depression.  All of a sudden it hit me, this is what I had been going through for so many years!  By that time, I did not have the psychotic features.  


When I was in medical school, we were taught that if you listen to the patient, she will tell you what she has.  I believe the problem that the medical world has now, is that the doctors don't listen to the patients much.  They go with the first thing they hear, do a test or two, then boom--there's your diagnosis.  This is another reason why we patients must become pro-active in our own care.  We have to do our own research about what is going on with us medically. 


The fortunate thing is that depression can be treated.  There are multiple modalities to treat depression.  We have to discover what works for us.  


Iris L






julielarson
Posted: Wednesday, December 28, 2016 12:53 PM
Joined: 9/30/2015
Posts: 1155


Iris, thank you. I have my depression well under control with Trazidone and so maybe I can come off the antipsychotic with little trouble.. I do not know for sure and am kind of scared to go to that place of strange thoughts and so I want to make an informed choice with a proper doctor.
Iris L.
Posted: Wednesday, December 28, 2016 1:15 PM
Joined: 12/15/2011
Posts: 18357


That's a good plan, Julie. You might ask, what does your diagnosis have to do with dementia?  Keep in mind that the answer might be opinion, not based on facts.


Iris L.


julielarson
Posted: Wednesday, December 28, 2016 1:21 PM
Joined: 9/30/2015
Posts: 1155


Yes Iris I imagine it will be opinion but maybe I will find an ally with a question like that.. Not hoping for that but you never know. I guess at this point I am just so tired of feeling like a lab rat to these people who are supposed to be helping me..
llee08032
Posted: Thursday, December 29, 2016 7:31 AM
Joined: 5/20/2014
Posts: 4408


Ditto to all said especially about how courageous you are Julie. No judgement here.

julielarson
Posted: Thursday, December 29, 2016 7:40 AM
Joined: 9/30/2015
Posts: 1155


Thank you llee!
julielarson
Posted: Thursday, December 29, 2016 9:15 AM
Joined: 9/30/2015
Posts: 1155


Right now I am in a holding pattern waiting for calls from the Brain institute and a new place for therapy, as well as a different Neurologist for the mean time between getting in to see someone at the brain institute because it is so popular I will be waiting possibly until September of this coming year to get in to be seen. They are all trying to figure out my insurance.
julielarson
Posted: Thursday, December 29, 2016 1:43 PM
Joined: 9/30/2015
Posts: 1155


I have my first appointment with the new Neurologist on the 16th of January! I called them and got in.. Yay!
Iris L.
Posted: Thursday, December 29, 2016 3:17 PM
Joined: 12/15/2011
Posts: 18357


Great, Julie!  Persistence pays off.


Doctors are learning what to do with us, because they are not used to early stage PWDs.  


We both, PWDs and doctors, need to be gracious, and learn as we go along.


Iris L.


julielarson
Posted: Thursday, December 29, 2016 3:32 PM
Joined: 9/30/2015
Posts: 1155


Iris this time I am taking all my information with me.. I do not care if the symptom could be considered a mental health issue or not they are going to hear about it.. I am no longer keeping them separate. I will be cordial but I will be thorough too.
The_Sun_Still_Rises
Posted: Thursday, December 29, 2016 6:01 PM
Joined: 7/24/2015
Posts: 3020


Good luck that, and I very glad you called....and so excited hear you got in right away!  That fantastic news! 

Everyone hoping 2017 a better year.  I think that the first time I have heard that collectively this world....usually it just a person here there.  But maybe 2017 really WILL be better??  This news you share make me think maybe it true....?

I was thinking you....and I was thinking because they scored you neuropsych the old school way, I no sure how do it....but it would be great find a way get yours re-scored. 


julielarson
Posted: Thursday, December 29, 2016 6:05 PM
Joined: 9/30/2015
Posts: 1155


Sun, maybe they did on the one for the doctor but I got one meant for the patient. I gave them a heads up that there were two neuropsychs and one MRI and told them where it was.
alz+
Posted: Thursday, December 29, 2016 9:29 PM
Joined: 9/12/2013
Posts: 3608


Julie - you helped 1000 people right there by sharing your story.

I was just reading about how women doctors patients - over time - do better than with male doctors. They thought it was because of the ability of women doctors to listen deeply.

Iris just demonstrated that! I know she is not advising as your doctor, but she listened, read, what you had to say and WOW how cool is that to understand you always knew what was happening but it was not recognized by others!

I was treated for mental illness, bi polar and whatever else. Have had depression my whole life (brain changes in fetus during pregnancy from mother's mental/physical condition is now officially recognized).

when someone understands, and then refines it, and then gives you a direction - how often does THAT happen?

You are an artist so you have a different brain to begin with. I am so excited you got an appointment. Those days when you were thinking bad thoughts and sought help! Brilliant!

I was once given a bad medicine, an antidepressant, and after 2 days I was raging and nuts. I became suicidal and hid in the snow at night.

I have had so many bad reactions to pharmaceuticals, now an Aleve keeps me from urinating for 2 days. But many of us have been experimented with the meds prescribed us and had bad reactions, including dark thoughts and violence. It is like being trapped in a hell zone.

You are so determined, your journey shows how long it can take to get proper help and how vital it is to keep looking if you know your doctor is just not getting it.

well done. well done to everyone who shared here. very moving story. when you told about the many electric heaters I related, partly because my over diligence has prevented disasters at times. I think you were right to follow your gut even if they complained.

love this board. so  many smart people who don't have to use as many words to say important stuff.  Happy New Year - may the gloom be lifted in 2017.


BlueSkies
Posted: Thursday, December 29, 2016 10:11 PM
Joined: 2/24/2016
Posts: 1096


Julie, you have had quite a time with things.  I'm so sorry.   I am however very impressed by how you have continued to fight for help while struggling with so much.  You are an inspiration to us all!  

I love how you are taking control of your health and your life.  Remember when you go see the doctors that they are not God's, they are just human beings like the rest of us.  Trust yourself and your instincts.  You know your body and mind better than they do.  If something doesn't feel right, you don't have to go with it.  I use to get so intimidated when going to the doctor.  It's as if I would turn into a child and they were the parent.  I never argued with them or pushed my beliefs even when I thought them wrong.  It took me a long time to finally speak up and demand proper treatment and care.  

PS...I can't believe you thought we might not like you after reading your story.  Silly!  We all have our stories, we just aren't all as brave as you are to share them.  I think your awesome


julielarson
Posted: Friday, December 30, 2016 4:45 AM
Joined: 9/30/2015
Posts: 1155


Thank you Alz,,
julielarson
Posted: Friday, December 30, 2016 4:47 AM
Joined: 9/30/2015
Posts: 1155


Thank you BlueSkys.. Yes it has taken a long time go get to this point.. but I am here and I am ready.
julielarson
Posted: Friday, December 30, 2016 12:25 PM
Joined: 9/30/2015
Posts: 1155


I am not sure if this has anything to do with the neurologist but I am going to bring up my emotional outbursts.. I seem to get angry fast and often.. I also seem to get touched to the point of crying over many things that I used to be able to take in stride.. I once told the mother of my friend that the only thing I needed for Christmas was her being alive and nearly cried over it. My emotions seem to be overwhelming me lately.
The_Sun_Still_Rises
Posted: Friday, December 30, 2016 12:52 PM
Joined: 7/24/2015
Posts: 3020


I get all weepy like that when my thyroid low. 

<3

 


julielarson
Posted: Saturday, December 31, 2016 4:12 PM
Joined: 9/30/2015
Posts: 1155


I have my notes and I did not leave out anything in them.. I am going to recopy them  soon. I do not know what it all adds up to but it adds up to something I do know that.. I left nothing out and I am scared that it will get thrown in my face with this new guy because this has happened before with things I have brought up to the other Neurologist but I have a good feeling about it too. I feel kind of torn as you can tell..
Iris L.
Posted: Saturday, December 31, 2016 6:15 PM
Joined: 12/15/2011
Posts: 18357


I used to have nerves of steel; then when I first became ill in the late 1980s, my emotions became different.  I was not as strong.  I felt weak and vulnerable.  Even now, I feel that I am prone to falling into depression, when that was not part of my life before.  But now I have learned that emotional lability (fluctuation) is part of dementia.  My thyroid is stable, so I don't think it's due to low thyroid for me.


Iris L.