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bvFTD
julielarson
Posted: Thursday, February 16, 2017 4:50 PM
Joined: 9/30/2015
Posts: 1155


So yesterday I got a kind of wake up call when I was watching youtube videos about FTD... There was a guy who until he drank water would be dizzy when standing up.. This is very familure to me because the same thing happens to me.. Today I was watching some more of them and there was another guy being talked about who as part of his bvFTD walked over all cracks in the street and in the sidewalks. I do this also.. It struck a nerve in me to hear of this as it was part of what I reported to the new neurologist when I went to see him.. There are many things that are ringing true for me that I am seeing in those videos.
Iris L.
Posted: Thursday, February 16, 2017 5:31 PM
Joined: 12/15/2011
Posts: 18513


Julie, if I recall correctly, you do not have a diagnosis yet.  Please do not agitate yourself with these reports from other people.  I have been on this journey for over eight years, and my diagnosis is still cognitive impairment nos.  And I am okay with this.  In fact, this is great!  There is so much variability in brain disease that often a more specific diagnosis cannot be made.  


In the meantime, I do what I can do to ameliorate risk factors.  I used to search (and still do sometimes) for reports of what other people do, to see if I did the same things.  It's an exercise in futility for me.  My symptoms are like some, but not like others.  I am reminded, almost on a daily basis, what my symptoms are.  The main thing for me is learning how to deal with the symptoms, and working on Best Practices.  


Please be mindful that stress and anxiety will make whatever you are experiencing worse.  If you feel you must watch those youtube videos, please do something to reverse the stress after you watch.


Iris L.




julielarson
Posted: Thursday, February 16, 2017 5:42 PM
Joined: 9/30/2015
Posts: 1155


Iris, I am not stressed out.. I hang out on Facebook looking at kitty videos most of the time.. That keeps me from getting stressed out.. Thanks.
Iris L.
Posted: Thursday, February 16, 2017 6:02 PM
Joined: 12/15/2011
Posts: 18513


I'm glad you're not stressed out, Julie.  I struggle with being stressed out on a daily basis.  I am constantly practicing my stress relief techniques.  I have not gotten to kitty videos yet.  


Iris L.


The_Sun_Still_Rises
Posted: Thursday, February 16, 2017 6:31 PM
Joined: 7/24/2015
Posts: 3020


It can be very frustrating and disheartening when you say you symptoms doctor, and they blow you off and then you come find out that they REALLY ARE the symptoms this. 

The Alz Asso just came out with a disheartening study that they conducted that show that it take us Young Onset an average of 3 years be properly diagnosed!!!!  Ugg, I will hope that not the case with you.

Many us PWDs are working really HARD raise awareness doctors so that it do NOT take people soooo long get the full and proper diagnosis.  You can help in do that by share your story you journey....like you have on here.   Sometimes it like the 100th monkey...until they see a certain number us all saying virtually the same thing, they be blind it...but once a certain number threshold reached....they wake up see. 

I have be tried do a few searches you FTD...and I surprised at how little information there is out there.  But the FTD orgs tend do a real good job.  Anyways, I am glad that you are finally finding some information. 

For me...I know I had a bit denial that dementia/Alz really my dx (because I thought it whole brain) and I could not understand why some things still easy me.  Then I joined the video support groups....and I was surprised that what easy me, easy them....and what hard me, also hard them....it was then that I could no deny it myself anymore.  And while I was so glad be part the group....I was devastated find out this really IT.   So may be a bit a mixed blessing those videos. 

<3


julielarson
Posted: Thursday, February 16, 2017 7:01 PM
Joined: 9/30/2015
Posts: 1155


I guess why I posted this was to share my story.. What I have so far and what I am learning along the way.. It is hard to get a proper diagnosis with this kind of thing because there is such an overlap of symptoms with psychiatric disorders and other illnesses.. I am hoping that maybe one of the people who do not post but read will see what is going on for me and relate to it.
BlueSkies
Posted: Friday, February 17, 2017 11:09 AM
Joined: 2/24/2016
Posts: 1096


I understand how you feel Julie.  One minute everyone is saying how you need to be diagnosed early and the next minute your being told don't be in such a rush to get a diagnosis.  Lot of mixed signals about getting a diagnosis.  Anyway, hang in there and continue to be proactive in finding out what is going on with you.  I think you are doing great!
julielarson
Posted: Friday, February 17, 2017 3:00 PM
Joined: 9/30/2015
Posts: 1155


Thank you Blueskies.. I am working on it.. They are just waiting for one of my insurances to ok the MRI. I do not know if it will tell them anything but here is to hoping..
julielarson
Posted: Monday, February 20, 2017 9:41 AM
Joined: 9/30/2015
Posts: 1155


I am going to therapy today and thank goodness my therapist is in my corner these days.. I will tell him what I have learned along the way.. I will talk about the bvFTD and about when my friend passed away.. It will be full hour.
grandmalynda
Posted: Monday, February 20, 2017 9:55 AM
Joined: 12/3/2016
Posts: 374


Julie, good luck with your therapy appointment.  Hope all goes well.  Keep us posted.

--Lynda


julielarson
Posted: Monday, February 20, 2017 10:02 AM
Joined: 9/30/2015
Posts: 1155


Thanks Lynda! It is good to see you post this morning.. You gave me a smile.
The_Sun_Still_Rises
Posted: Monday, February 20, 2017 10:09 AM
Joined: 7/24/2015
Posts: 3020


Yes, nice see you both.   

Hope you appointment goes well, now that you have much more information under your belt.  Learning about dementia and then Alz was a bit of a learning curve for me...it felt good when I started knowing more. 

Hope you both have great days (and indeed that everyone do). 

<3


julielarson
Posted: Monday, February 20, 2017 4:11 PM
Joined: 9/30/2015
Posts: 1155


Well that was interesting.. He was impressed with my ability to talk with him for an hour and not have any memory problems during our talk.. I tried to tell him it is not so much memory as it is behavior.. but he wanted examples which I had trouble coming up with.. I guess the memory stuff is not that great anyway.. Like I said with him it is one step forward and two back.. He said there is nothing wrong with my brain.. I just sat there... He said I think too much..
The_Sun_Still_Rises
Posted: Monday, February 20, 2017 4:57 PM
Joined: 7/24/2015
Posts: 3020


((Hugs)), I am so sorry.  Sometimes some people are not the best at empathy or validation.  Not that it is any consultation, but young girls who are autistic face the same preconceived prejudices...hence why boys 5x more likely be dx'd than girls.  Common phrases, well she looks me in the eye so she must not have...or, she can talk so she must not have....or the best, she well behaved so she can't. Ugg. 

All I can say is, you are your own best expert on yourself.  Every person knows when things are going wrong. And it natural and normal be look for answers. An old saying my friend used say...Don't let the bastards get you down.

<3


alz+
Posted: Monday, February 20, 2017 6:20 PM
Joined: 9/12/2013
Posts: 3608


Julie - to pay to have some one tell you "I see no brain problems" is double frustration. Finding similar symptoms in other people - I think it may show what part of brain is under siege? Avoiding cracks in sidewalks is an odd symptom to share, forgot the other ones...what do you think these things mean?

everyone thinks dementia is "loss of memory" - I have no idea how we are supposed to show our actual brain malfunctions.

I am going to my family doctor this week and she always asks at the end of visit, "what year is it?" which elicited a blank stare from me...not because I did not know but because it was so weird I could not answer!  I am prepared to say first thing Friday "2017!" ha!

when I was trying to diagnose myself I never thought of Alzheimer's.

* I love the cat, kitten, dog videos. who doesn't love the little ones!


julielarson
Posted: Monday, February 20, 2017 7:07 PM
Joined: 9/30/2015
Posts: 1155


Alz, I do not know what they mean, I just have found that I share some of the same qualities of others who have bvFTD and I am sharing them.. I have taken up gambling and I smoke way too much. I am less emotional with people, and I keep to myself more than I used to. I can not do my artwork like I used to do.. I am not depressed at all.
The_Sun_Still_Rises
Posted: Tuesday, February 21, 2017 5:59 AM
Joined: 7/24/2015
Posts: 3020


Hopefully you are feeling better this day.  It hard not let the crap things others say get at you, but wanted remind you that he just one guy of many and that his opinion real don't mean anything in the scheme of things.  And just remind you that you do have friends here who care about you.  Sending you warm wishes this day.

<3


julielarson
Posted: Tuesday, February 21, 2017 6:35 AM
Joined: 9/30/2015
Posts: 1155


Thank you Sun! Big hugs to you.
grandmalynda
Posted: Tuesday, February 21, 2017 6:51 AM
Joined: 12/3/2016
Posts: 374


Julie, I urge you to keep on searching and persevering until you get the correct dx.  The journey is not an easy one but know that you are not alone.

Have a happy day!

--Lynda


julielarson
Posted: Tuesday, February 21, 2017 7:01 AM
Joined: 9/30/2015
Posts: 1155


Thank you Lynda!
jfkoc
Posted: Tuesday, February 21, 2017 8:55 AM
Joined: 12/4/2011
Posts: 21248


Julie...I have not been following your story so this may not be relevant but if you are not yet diagnosed I suggest you try for LTC insurance.
julielarson
Posted: Tuesday, February 21, 2017 9:00 AM
Joined: 9/30/2015
Posts: 1155


Jfkoc, I do not know what that is.
alz+
Posted: Tuesday, February 21, 2017 10:19 AM
Joined: 9/12/2013
Posts: 3608


Long term care Insurance?

Julie, I am interested in what you are sharing about FTD, such specific shared behavior changes in people who have it. If you want to share more of what you find, I hope you will keep doing this -  you never know what will make a breakthrough in thinking.

 to be unable to do your art and still not be depressed. I know I am overloaded from stress, plus shingles pain and itching, and frustrated, and yet would not say I feel depressed. I do feel despair now and then but still intend to do 1 thing a day that seems meaningful.

My ability to recall what people have, if they have been diagnosed, even what they just wrote (or I just read), to know what is current, to find my way around board is lower than I am familiar with and my posts are confused. This is new for me. 

I wonder if I am offending other people now. There is no intention on my part to be a jerk to anyone. 

The sun is shining, the ice is melting, the TV is off, the dog is content for now. wishing everyone lots of love and courage!

 


julielarson
Posted: Tuesday, February 21, 2017 10:45 AM
Joined: 9/30/2015
Posts: 1155


Alz you are not offending anyone.. You are doing fine.. I will post more as I find out things.. Thank you!
The_Sun_Still_Rises
Posted: Tuesday, February 21, 2017 12:37 PM
Joined: 7/24/2015
Posts: 3020


There is just sadly so little on FTD out there, what it like and what it present as....much less, what it present as for the person experiencing it.  I keep keeping my eyes open for.  If you on FB, you should look up Susan....she real nice, you will love her. 

<3


Iris L.
Posted: Tuesday, February 21, 2017 6:52 PM
Joined: 12/15/2011
Posts: 18513


Julie, LTC insurance is long term care insurance.  It pays for care in a facility or in home when you cannot perform two or more of your activities of daily living.  The exact nature of what will constitute your benefits will depend upon your contract.  Most insurances are rewriting or dropping their LTC policies because they have discovered that they are very expensive to pay out, because the recipients need more care than they paid for.  


Once you have a diagnosis of a chronic illness or are suspected of possibly having a chronic illness, you will become ineligible to obtain LTC insurance.  That is why people are recommended to obtain this insurance before medical evaluation for a significant illness.


If a person does not have LTC insurance, she will have to cash in assets or find other means of covering LTC expenses or rely on Medicaid.


Iris L.


BlueSkies
Posted: Tuesday, February 21, 2017 8:47 PM
Joined: 2/24/2016
Posts: 1096


Julie, so sorry you had to put up with that reaction from your therapist.  Doesn't sound as if he gives you much respect.  Sound as if he was treating you like a child.  Don't know what makes people and especially a professional to think it's okay to talk to others that way.  Next time tell him you think he doesn't listen to you very well and that maybe you need to find someone who will take you seriously.  Bet he will listen to that.    I'm sure he doesn't want to lose patients.  Sometimes you have to teach them how to treat you.  Most have a tendency to talk down to you and I can't stand that.  Use to put up with it, but have changed.  Just can't deal with being treated that way any more.  I say something once, if that doesn't change the way they treat me I look for someone else.  Hang in there and keep sharing and posting.  We're here for you. (((((Hugs)))))
Iris L.
Posted: Tuesday, February 21, 2017 11:01 PM
Joined: 12/15/2011
Posts: 18513


julielarson wrote:
Well that was interesting.. He was impressed with my ability to talk with him for an hour and not have any memory problems during our talk.. I tried to tell him it is not so much memory as it is behavior.. but he wanted examples which I had trouble coming up with.. I guess the memory stuff is not that great anyway.. Like I said with him it is one step forward and two back.. He said there is nothing wrong with my brain.. I just sat there... He said I think too much..

 

 

Julie, I hate to say it, but I am not surprised.  Your experience sounds exactly like my experience.  I was not able to break through the disconnect, so I finally gave up.  Even now, after all I've been through, I don't know how to break though the disconnect.  The psychologists have a system of thought that does not conform to cognitive impairment or early dementia.  Years ago, when I was still a practicing physician, I might have had the language to connect with them.  But I cannot now.  


So, unless you can locate a psychotherapist who is familiar with cognitive impairment and early dementia and who can help you with this, you will be stuck in the same place.  


I said I gave up.  What I gave up is trying to break through to a psychologist.  What I did not give up on was learning to do whatever I needed to do to help myself.  I needed to learn to psychoanalyze myself to give myself what I needed emotionally and intellectually and spiritually.  It was a long, hard road, but I did it.  I am still doing it.  The main way I accomplished this goal was by learning from my peers.  I absorbed their experiences.  I figured out what I needed.


My desire for you is that you will be able to do the same for yourself.  I pray for God to bring people into your life who will show you what you need and who will meet your needs.  It can happen for you, Julie!


Iris L.



 



The_Sun_Still_Rises
Posted: Wednesday, February 22, 2017 5:46 AM
Joined: 7/24/2015
Posts: 3020


They say, if at first you don't succeed, try try again.  He might have been great for before....but now you have grown and changed.  Perhaps he is feeling like a sweater that got shrunk in the wash and no matter how much you pull and stretch it, it no longer fits.  The key in recognizing when it time for a change. 

I would love see you with a therapist who makes YOU feel validated and lifts you up.  They are out there....but sometimes you have be willing try a few for get the right one. 

<3


julielarson
Posted: Wednesday, February 22, 2017 9:19 AM
Joined: 9/30/2015
Posts: 1155


Thank you BlueSkies and Iris and Sun.. I am not having the best day today.. I will be in and out all day long..
BlueSkies
Posted: Wednesday, February 22, 2017 9:33 AM
Joined: 2/24/2016
Posts: 1096


Sorry to hear Julie  
Sending you some love and an extra big hug today. ((((((((((Julie))))))))))) 
 Hang in there!

grandmalynda
Posted: Wednesday, February 22, 2017 1:19 PM
Joined: 12/3/2016
Posts: 374


Sorry you're having a rough day Julie.  Stay positive!

Be Well

--Lynda


The_Sun_Still_Rises
Posted: Wednesday, February 22, 2017 4:03 PM
Joined: 7/24/2015
Posts: 3020


((Hugs))...I was wondering if it was going get you this day.  Sorry you are having a hard day.  People often fail realize with dementia that negative encounters can real affect us days.  Even when we know better, intellectually, but emotionally things just get at. 

I have a 1-3 week recover time now negative encounters, which is surprising for me because things used wash right off my back before dementia.  I have learned, that I have absolutely NO need for negative people in my life.  I find that those who respect you will TRY understand what you are trying say. 

I try see it as whether they self-focused or other person-focused in their approach.  His reaction you is his self-focused opinion....not a you-focused opinion.  And I just categorically disregard those who only thinking of themselves in an exchange.  In other words, his words have more do with him and his opinion than with you and what you are going through or so kindly and lovingly trying tell him. 

In any event, I love you...and I care....no matter what the weather.   

<3


julielarson
Posted: Wednesday, February 22, 2017 4:13 PM
Joined: 9/30/2015
Posts: 1155


Thank you Sun, yes it takes a while to get over things today.. I have something else that is worrying me but it will be fine.. Been a real struggle today I will tell you.. I am doing so much better now..Thanks.. Love you too.
julielarson
Posted: Wednesday, February 22, 2017 4:17 PM
Joined: 9/30/2015
Posts: 1155


BlueSkies and Lynda thank you so much for your kind words.. I love you both .. thanks so much.. I am doing much better than I was this morning..