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julielarson
Posted: Tuesday, December 6, 2016 11:24 AM
Joined: 9/30/2015
Posts: 1155


I just sent out an email to my neuro nurse practitioner and asked if there was a way I could get another MRI done. She said they are expensive and that I am doing pretty good so she saw no need for it. I on the other hand am thinking that my rocking back and forth and my other quirks like smoking way too much and making inappropriate jokes and am cold all of the time  have to do with bvFTD and that it is time to see if there are brain changes going on. I of course have not told her these things but maybe if I did she would consider the MRI? I am lost and do not know what is right at this point.. I am just hoping someone on here can point to something I am missing. Maybe I am just upset to remember that I had a much higher IQ than I do now. I was reading a story about a guy who was diagnosed with bvFTD and how his IQ suffered under that illness. I am not handling this very well as you can probably tell.
Mimi S.
Posted: Tuesday, December 6, 2016 4:18 PM
Joined: 11/29/2011
Posts: 7027


Rule #1

Always inform neuros of all symptoms!!!!!!

Discuss things with doc.

The inappropriate remarks certainly sound like FTD.

Smoking you do need to figure out how to cut that back to nothing.  Sorry, don't see sugar coating on that one.

The rocking, I have no idea.

Maybe others or the Fronto-temporal site can help.  I'm sure you have read up on it.  And, I think, this is the type of dementia that has many sub-types.

But that you are aware is good.

 


julielarson
Posted: Tuesday, December 6, 2016 5:34 PM
Joined: 9/30/2015
Posts: 1155


This is what I get for talking to her.. These are all psychiatric complaints and I suggest talking them over with your psychiatrist.
julielarson
Posted: Tuesday, December 6, 2016 8:05 PM
Joined: 9/30/2015
Posts: 1155


I am mad I am mad because I had a higher IQ than what I have now, and I had this higher IQ when I was having mental health problems and the only thing that has changed is my memory problems. I used to be able to count on my IQ and being able to figure out my way out of things and now I can not do it as easily and lots of times I have to ask for help to get things in order again. What really makes me mad is that she seems to think it is all about my psychiatric problems and it is not. I am actively going to be looking for a second opinion now because this is really bad and I do not feel listened to at all. Tomorrow I am calling to find out when I can see my doctor to get a referral to see someone at the teaching hospital here in Portland. I am really disappointed.
The_Sun_Still_Rises
Posted: Wednesday, December 7, 2016 7:26 AM
Joined: 7/24/2015
Posts: 3020


Not everyone has anything show up on MRIs....and it does not rule out.  The MRIs are really for seeing if there has been a stroke or a tumor...and ruling that out as a cause.  The neuropsych is really the definitive test...as that shows the pattern. 

Try not obsess much with that IQ number...because I feel that came from the functional questions like who were certain historical figures, rather than you problem solving - which is clearly STILL there, since you are still puzzling this out quite adeptly. 

Even on the neuropsych, I came up with many work-a-rounds solve the answers...which I feel is true IQ showing...but of course you will have find your own examples show you self that you still smart. 

Anyways, know that you smartness show through me...for what that is worth you.  <3

<3


julielarson
Posted: Wednesday, December 7, 2016 7:34 AM
Joined: 9/30/2015
Posts: 1155


Thank you Sun, my smarts come from knowing words and working out what those words mean..
Mimi S.
Posted: Wednesday, December 7, 2016 9:15 AM
Joined: 11/29/2011
Posts: 7027


Julie, And those smarts, otherwise called, cognitive reserve, are what will help you cope.
Your IQ number is not who you are!!!!!

Have a good day


julielarson
Posted: Wednesday, December 7, 2016 9:49 AM
Joined: 9/30/2015
Posts: 1155


Mimi, thank you! You may never know how important those words you wrote are but I am going to tell you they meant the world to me.
Iris L.
Posted: Wednesday, December 7, 2016 12:13 PM
Joined: 12/15/2011
Posts: 18513


Mimi is always encouraging us to focus on our strengths.  Think about what your strengths are, Julie, and use them to compensate.  


Iris L.


julielarson
Posted: Wednesday, December 7, 2016 1:37 PM
Joined: 9/30/2015
Posts: 1155


Iris, you are right I need to list all my strengths and realize that those are what will get me through.
alz+
Posted: Wednesday, December 7, 2016 2:56 PM
Joined: 9/12/2013
Posts: 3608


Julie - do you feel like you start thinking about IQ or other things and your mind will not let go?

obsessed with stuff? that seems to happen to many of us.  If you can find something to do that you enjoy, dare I say FUN? it will start to balance out the fear and loathing.

I made lots of lists of what I wanted to do and then could not do it because of old body parts or no money. so I went rock hunting.

if I am carrying 10 pounds of worry and dread in one hand I try to carry 20 pounds of something that feels super good and makes me laugh. That way I don't have to think about stopping fretting or getting over anything, and it may sound weird but it works for me.

Do you have animals? Have you ever fed birds? If you still drive go to favorite place with a magazine. I also can clear my head by using my camera - will pick wildflowers, or when leaves turn, or clouds. Can take a hundred pictures and no cost for digital images.

I also go to thrift stores and browse because of love for fabric and clothing and ultra low budget.

I wish I was a better singer, so I sing to myself on walks and watch The Voice.  There are a million videos on youtube - kind of nice to snuggle into bed on clean sheets and listen to lectures or documentaries. You might consider volunteering at ???

I think it is normal to become fixated on symptoms and want some physical evidence. Being a word person, saying inappropriate stuff must bother you a lot. I went through 2 years of swearing before I was diagnosed. My initial symptoms were not loss of word recall or the usual stuff. 

Today is a good time to start thinking of fun, even for only a few minutes.  and by FUN I mean something you get lost in and enjoy, which may be sleeping or brushing horses.  

hugs to you - this is not easy for anyone. You are doing great.

isn't it fun to have Mimi and Iris lift you  up?  I love them, and Sun and Llee and all the new people. Love them.


julielarson
Posted: Wednesday, December 7, 2016 3:40 PM
Joined: 9/30/2015
Posts: 1155


Yes honey, brushing a horse would be heaven. I will make it to one of the stables here one of these days. I need to come up with the money to be able to ride though and that is a hard thing to do on my budget. Yes having everyone pick me up is wonderful. smiling right now.. I am making fruitcake for the first time ever today and it is going well. Big hugs to everyone..
julielarson
Posted: Wednesday, December 7, 2016 4:57 PM
Joined: 9/30/2015
Posts: 1155


I used to be an artist. A teacher at the community college I went to before going on to the university said I had some talent. I can not do my artwork anymore. I lost the ability to sit and work on a sculpture or a painting a while back. I miss it sometimes but right now I do not miss it in the least. It used to be who I was and it is no longer who I am. I tried painting a painting a month or so ago but what I want to put on the canvas and what actually gets on the canvas are very different things. I do not have the ability to hold the brush right and to get the paint onto the canvas like I used to be able to do. It makes me sad to say this but it is gone. Every thing I used to have when it came to expressing myself is gone.
Mimi S.
Posted: Wednesday, December 7, 2016 5:23 PM
Joined: 11/29/2011
Posts: 7027


Julie,

Can you settle for less than perfection?

Just enjoy.

Blank art paper. Thick brushes.  Few jars of tempora paint.  Put some music on.  And just let the brush move with the music.

Same with some soft clay. Take a big lump and begin manipulating.  Don't worry about final product.

It's the process.

Will it work for you?

 


julielarson
Posted: Wednesday, December 7, 2016 6:42 PM
Joined: 9/30/2015
Posts: 1155


Mimi it is hard to settle when I used to be able to translate what I saw in my head to the canvas and now I can not do it. I get frustrated and leave it undone more often than not. It is easier for me to paint than it is for me to sculpt. I will get out another canvas and work on it over the next couple of weeks and see how it goes.
Iris L.
Posted: Wednesday, December 7, 2016 7:10 PM
Joined: 12/15/2011
Posts: 18513


Julie, you are still an artist!  You just have to find a new way of being an artist.  You are still you, even though there may be changes.  That was the point of the book, Still Alice.  She was still Alice, despite the cognitive changes.  I believe that I am still me, despite my changes.  I might even be a better me, because I am a distillation of all I have experienced throughout my life.


I have discovered that I can accomplish what I want to accomplish, if I make accommodations.  I have to take things step-by-step.  I have to avoid distractions.  I can't multitask.    I have to mentally encourage myself at times.


There is a place near where I live that offers equine therapy for the disabled.  Most of the patrons are physically disabled children and adults.  I am going to check them out when I get a chance.  I love horses.


Alz+ is a fountain of inspiration.  Keep note of what she says!


Iris L.


julielarson
Posted: Wednesday, December 7, 2016 7:20 PM
Joined: 9/30/2015
Posts: 1155


Iris, that is wonderful you can go and hang with the horses.. They are a therapeutic animal. I have a book of horses here. I am going to give myself a chance to paint again.
julielarson
Posted: Wednesday, December 7, 2016 7:33 PM
Joined: 9/30/2015
Posts: 1155


I am still good at color mixing and I think I am going to do paintings all about color. There some inspiration. smile.
obrien4j
Posted: Wednesday, December 7, 2016 8:32 PM
Joined: 11/18/2016
Posts: 451


Julie, an IQ test is just a number, just like your weight. It's going to change according to the circumstances. As redundant as it may seem, it is not a reflection of how smart you really are. YOU know how intelligent you are, that's all that matters. And from what I can see, you're a pretty smart cookie!
julielarson
Posted: Thursday, December 8, 2016 5:25 AM
Joined: 9/30/2015
Posts: 1155


Thank you!
Mimi S.
Posted: Thursday, December 8, 2016 7:46 AM
Joined: 11/29/2011
Posts: 7027


These boards are great. We are such support for each other!!!
julielarson
Posted: Thursday, December 8, 2016 9:02 AM
Joined: 9/30/2015
Posts: 1155


I just remembered something else that reminds me of BVFTD.. When riding my bike out on the street if a car was coming up on me I had to work very hard at not riding into the path of that car. It did not matter if it was coming from the front of me or on the back of me.. I do not ride anymore so I am safe now but it was scary enough that I had to stop. The reason I bring this up is because it reminds me of the guy I was reading about over the last two days who has bvftd said on one test he was taking he was supposed to not click on the computer on an x and no mater how he tried he clicked on that x and so he failed the test.
BlueSkies
Posted: Thursday, December 8, 2016 10:15 AM
Joined: 2/24/2016
Posts: 1096


I failed that test miserably.  Very poor impulse control.  Seemed like I just couldn't keep up with that x.  When I saw the x by the time it registered and I clicked on it , it was long gone.  Then for some reason I would catch myself clicking when there was no x.  Maybe trying to anticipate and getting it wrong?  Not sure why I clicked on different letters at times.  Was very frustrating.  Ended up missing a lot of x's. And clicking on a lot of letters that were not an x.  Diagnosed probable FTD.  Was told unsure of what variant at this time.  Especially since I have significant aphasia, but not typical PPA presentation.   Waiting to be tested again in September 2017.  Hopefully it will be more apparent then what type I have.
julielarson
Posted: Thursday, December 8, 2016 10:20 AM
Joined: 9/30/2015
Posts: 1155


Good luck honey! I am still MCI.. but something is going on with me that is just a little bit weird. LOL! Or maybe I just think it is weird.
julielarson
Posted: Thursday, December 8, 2016 3:57 PM
Joined: 9/30/2015
Posts: 1155


I hope they can pinpoint what kind of FTD you have next time they test you.
Iris L.
Posted: Thursday, December 8, 2016 5:08 PM
Joined: 12/15/2011
Posts: 18513


Julie and Blue Skies, I want you two not to get too hung up on knowing a precise diagnosis. It's nice to know, but suppose your doctors are unable to tell you much more than you already know now?  The testing does not give you a diagnosis, but confirms a diagnosis that is concluded by your clinical history and neurocognitive and other testing.  

I have been on medication for seven and a half years and I still have a nos (not otherwise specified) diagnosis.  So what?  I'm satisfied.  The main thing that a diagnosis will add to you is what meds you should avoid.  


The tests are not something that you fail.  They are tests that try to denote your ability in various areas.  It's not like failing a math test.


The diagnostic process moves slowly.  While you are in the process, use the time for Best Practices, for your philosophical perspective, your creativity, or for whatever else you want to do.  In other words, don't sit around waiting for a precise diagnosis, because that may take a long time, or may even never come.  


Iris L.


julielarson
Posted: Thursday, December 8, 2016 5:23 PM
Joined: 9/30/2015
Posts: 1155


Iris, thank you for again talking me off the curtains in the front window.. Tomorrow I start painting colors on a canvas.. yes!
BlueSkies
Posted: Thursday, December 8, 2016 8:56 PM
Joined: 2/24/2016
Posts: 1096


Iris, I appreciate your concern, but just so you know, I am not "hung up" on getting a specific diagnosis.  I was just responding to Julie's post regarding the x test and giving her a little more background on myself.  I thought this place was for sharing information?
Iris L.
Posted: Thursday, December 8, 2016 11:16 PM
Joined: 12/15/2011
Posts: 18513


I'm sorry, Blue Skies, I was trying to ease your mind.  You mentioned failing a test miserably.  I didn't want you to feel bad about the test.


Iris L.


BlueSkies
Posted: Friday, December 9, 2016 4:36 AM
Joined: 2/24/2016
Posts: 1096


No problem Iris, I was just trying to explain to Julie how it was probably the most difficult test for me.  It really surprised me because when the tester explained what I was to do, I thought, " piece of cake".  Boy, was I wrong.  I had no idea that I had a problem in that area.
julielarson
Posted: Friday, December 9, 2016 11:25 AM
Joined: 9/30/2015
Posts: 1155


I went to the source of the test and spoke with her about what could be going on.. She said I have both amnesiac and non-amnesiac parts to the MCI and that answered my question that I had for her.. See the amnesiac one leads to AD more often than not according to some research papers I have been reading. I am done reading for now.. I get all worked up and get all kinds of ideas and now I have decided I am going to live my life.. I am going to be very busy making things for Christmas in the next couple of weeks. I will truly enjoy everything I am going to be doing..
grandmalynda
Posted: Friday, December 9, 2016 12:24 PM
Joined: 12/3/2016
Posts: 374


Way to go Julie!  I'm trying to do the same.  Concentrate on what we can still do and let the rest go. Not easy but well worth the effort I think.

---Lynda (Enjoy your holiday!)

 


grandmalynda
Posted: Friday, December 9, 2016 12:36 PM
Joined: 12/3/2016
Posts: 374


alz+: You remineded me of how much joy I got from rock hunting.  Haven't done it since I left Colorado.  Would love to see what Arizona has to offer!  Thanks so much for the reminder.

--HAPPY Holidays!    Lynda 

 


The_Sun_Still_Rises
Posted: Friday, December 9, 2016 12:52 PM
Joined: 7/24/2015
Posts: 3020


Yes, yes...ENJOY the holiday...that what they here for.   

<3