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BethU

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Hi, all ....

I know about 20% of PALS also have FTD (frontotemporal dementia), and I think I am one of them. The speech pathologist at UCLA agrees with me (or rather, I agree with her that I have it), and I have some appointments coming up to look at this.

My problems started this spring with "word search" issues, which I think we all experience from time to time. I knew the word I wanted, but couldn't think of it, so would look in a thesaurus for a synonyn of the word, then go through the list of synonyns for THAT word till I found the word I wanted. A long way round, but it worked.

Then a new problem started this summer. I'd type a simple word like "expect," but couldn't recognize it on the screen. I felt what I'd typed wasn't an actual word, or I'd misspelled it, so I'd rearrange the letters to see if I could make it a real word. So I'd type "epcext," or "texece," etc. Finally, I'd look my original word up in the dictionary, and find that I'd written it correctly the first time, and then ... suddenly ... I'd recognize the word again.

Other language problems: I'll be typing merrily along, then look at the screen and find that what I'm writing makes no sense. (No remarks from the peanut gallery :)) I'm thinking one word and typing another. The only commonality is that they kinda sound alike, and always have the same number of letters. Like I'd be thinking "expect" but type "accept" or "expert." So I end up with a sentence of not-quite-right words that make no sense whatsoever and have no relation to what I thought I was typing. My hands seem to have a mind of their own on the keyboard. These do not seem to be simple typos ... they are always actual words, just not the ones I want to type.

Then the latest problem really threw me for a loop. I was trying to read a letter from the bank a couple days ago, and the sentence read: "At XXXXX, we are committed to providing you with timely information ..." etc.

I not only had no idea what those words meant, but could not recognize one single word in the sentence. I must have read it 100 times unable to decipher it, so I decided to work on the small words. I started with "are." I did not know what the letters ARE could possible stand for, but I knew it was a word, so I tried all the three-letter words I could think of to see if I could figure out the definition that would unlock the sentence. I tried: "Can" "May" "See" "Her" "Why" "Mom" "Dad" "Day" "Sun" and on and on. Could not figure out what those three letters stood for ... or any of the other words, either, of course.

It was the most baffling experience yet with this strange disease, and I finally just put the letter aside. A couple hours later, I picked it up again, and had no trouble reading it.

Anyway ... this seems to be pretty clearly FTD on the language side of the brain.

Reading on Google to try to figure out what this new development is all about, it seems to me I clearly have it on the other side of the brain, too, which controls behavior, personality, impulsiveness, etc. Since the late 1990s, I've had embarrassing and wildly inappropriate outbursts of anger (shouting four-letter words at my boss, shoving co-workers during arguments at work, etc.!).

One thing I read about FTD and ALS is that when they coexist in the same patient, the dementia always presents first. That is ... ALS doesn't sometimes turn into FTD, it's the other way around. A small percent (20%?) of frontotemporal dementia patients will eventually find their disease progressing into ALS.

Which is what started me looking backward in time to before my ALS symptoms started, which led me to reexamine the strange, hostile outbursts I started experiencing in the late 1990s.

If I understand this correctly, the dementia process would have been already ongoing in my brain when the ALS symptoms appeared in 2006. So that my current language issue does not mean I'm suddenly "getting" FTD ... it just means the FTD is spreading to both sides of my brain, which is not uncommon at all..

I still cannot figure out where my PSP (Progressive Supranuclear Palsy) symptoms come in. The ones I have are not the most significant signs of PSP ... the PSP biggies are the inability to look downward (eventually you lose all control of your eye muscles, so you cannot direct your gaze anywhere) and falling (which is a direct result of not being able to look downward.)

Trouble initiating swallowing (my situation) and double vision while reading (also my situation) are typical of PSP but they are not usually the presenting symptoms. But interestingly, they were sufficient for my 2nd neuro to diagnosed me with PSP, before I got deflected off into MG by the third neuro.

I know that about 20% of us PALS have FTD too, so if anybody has any feedback, I would sure appreciate it.

You know the old saying: "I was down in the dumps, and someone said to me, 'Cheer up, things could be worse.' So I cheered up, and sure enough, things got worse."

BethU
 
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rose

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Beth, I don't have any answers for you. I imagine that this is bound to frighten you, and I'm sorry that you or anyone has to contemplate it.

The first time I even read about FTD and other cognitive problems with ALS, was a number of months ago. I was still working at the time, and remember sitting in the jumpseat midflight, thumbing through a magazine and having trouble deciphering the credits under various photos of some sort of merchandise. It made me go all fearful inside, because I'd sort of come to terms with maybe having MND, but was counting on that part of my brain staying intact. Its the only time its happened, and maybe it truly was a bad layout on the magazine's part. But now, every time I can't think of a name, or search for a word, it has new meaning to me.

Probably everyone can't think of a name (recently I was picturing Burt Reynolds in my mind, and could not for the life of me have told someone his name at that moment!) I think the official medical terminology for this is 'brain fart" right? Same thing with not being able to spell a word we know, it does happen. Or we will write a word correctly, but it will look funny. Maybe you just have a slight extension of this and it won't develop much, if any further.

Hopefully you'll get some feedback from those with experience with this dimension. I just don't want you to feel alone in any of this, alway know that you've formed true friendships on this forum!

big, warm smiley hugs for you, dear friend! ((( :) )))

p.s. Thanks for posting this part:

"One thing I read about FTD and ALS is that when they coexist in the same patient, the dementia always presents first. That is ... ALS doesn't sometimes turn into FTD, it's the other way around. A small percent (20%?) of frontotemporal dementia patients will eventually find their disease progressing into ALS."
 
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BethU

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Thanks so much, Rose ... I have not been bothered as much by the word search issue (I've had that all my life :)) as the episodes where I cannot recognize words. But these are very new, and one thing I've learned is that with MND, strange symptoms sometimes appear, linger for a few months and drive you crazy, and then go away. My word search problem is not nearly as bad as it was a couple months ago, and may be fading away, whereas this other thing is pretty recent.

On the other hand, I told someone two weeks ago that I had Lou Rawls Disease. :)

You know what really scares me is PSP, where you lose control of the muscles that move your eyes ... so that you cannot focus on anything.

Thanks for the hugs! I needed them! (((Right Back Atcha)))
BethU
 
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brendapals

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Beth,
my dear,
I haven't figured out how to do the cute little "hugs" things, but you know I'm keeping you on my mind.
I was at my first ALS walk committee meeting today with the vice-pres of the Indiana ALS assn. and I was talking about something, and just went blank.
Then about 20 minutes ago, my 18 yr old son left with a buddy to go to a football game. He asked me to step outside and say hello to his friend. I did and the friend asked how I was doing, and then said they were going to have time to grab a burger before the football game. So I asked Evan if he had any money. He said "Mom, you gave me $20 about an hour ago".

I just laughed and told Evan and his buddy I guess I had Alzheimers along with my ALS. They both laughed and smiled the biggest grins!

I hope you are laughing right now!
later gater,
brenda
 

BethU

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Thanks, Brenda. You're a doll!

Keeping you in my thoughts, too!

BethU
>^.^<
 

awieleba

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beth

I am impressed with your tenacity! I get these brain farts alot and I chalk mine up to having 3 toddlers! I just cant believe that you look up the word you cant think of in a thesaurus! I Just say 'forget' or 'whatever'. WOW~ you are impressive with your strong will.
 

rose

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Oh yes, our Beth is a strong tenacious one!

Beth, I'll bet as you having worked as an editor all of those years contributes to your frustration now. It has to be second nature to proof read anything you write.
I understand why the eye problems with possible PSP worry you as much as it does. The eye movement and ability to focus is what we hold on to knowing that much else may be lost.

I found your post in response to the thread "What is FTD" very helpful and easy to understand. I had not understood the difference between the effect of FTD versus Alzheimer's.

Re: the thesaurus, I do keep one handy, but what I wish is that it were an option for one like the spell check on my computer. At home we mostly use Firefox for our browser, and it will put a little squiggly line in red under anything that it doesn't recognize as being spelled correctly. Then one just has to right click on the word, and it gives a list of choices. The spell check has a somewhat limited vocabulary, but its certainly better than my typo potential skills!

take care, :)
 

sharonca

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Oh Beth, my heart goes out to you.

My mother had Pick's disease which is a form of FTD. Apparently not one that links with ALS but still. I think she had it long before we had any clue and yes the socially inappropriate behavior is the worst when we didn't know what she had (and I could not think of the correct wording so I used those).

I too type a word that is not at all what I meant to type and cannot think of words but I'm not as clever as you. I did go back and read your thread to see if I could figure out the correct wording for the social aspect. I edit my posts several times to make sure they make sense.

The whole thing is just awful. I'm so sorry you have so much to deal with.

Sharonca
 

BethU

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Thanks, all. I really appreciate the support and feedback. This not recognizing words is pretty new ... Never thought I'd be saying "it all depends on what the meaning of is is" :), but the personality changes and impulsiveness are probably going to be more of a problem, especially when I have to depend on my poor caregivers. But at least the outbursts only happen occasionally ... I spend the time in between outbursts running around apologizing like mad !

One good thing: I FINALLY found a connection between PSP and FTD and ALS! Reading about FTD last night ... this whole thing is really bugging me, as you can see! ... I came across the statement that "there is overlap between PSP and FTD." I have no idea what the overlap consists of, and will have to go back and read the article when I'm not falling asleep ... but perhaps it simply means that there are symptoms in common.

So, the fact that ALS does not usually present with vision problems doesn't mean a thing, because PSP does, and it "overlaps" FTD. So if FTD is my primary, underlying disease, as it is in about 20% of ALS cases, then ALS symptoms are simply added on to the underlying dementia (FTD/PSP) symptoms.

That is a relief, as it seems so weird and scary that three different neuro problems could have started in me simultaneously. Not that I want any of it, but if I have to have it, I want it to make sense !

April, we're in the same boat wanting answers: "I don't care what you call it, just tell me what it is!"

The scariest thing for me is thinking that when I get further along with ALS, I could ALSO have no control over the muscles in my eyes ... no ability to focus, just random double vision, with my eyeballs rolling around in my head! But I've got that solved. I'm SURE they can make glasses with prizms (in fact, that's what I'm trying to get now, for reading), and prizms will hold your eyes in focus. So I can at least read! Or watch TV.

On a cheerier note, Dr. Graves called Friday, and I've been accepted in the emotional lability drug study at UCLA (I think it's going on in a number of places). And not a second too soon! :)

Sharonca: You're right, I've read that Pick's Disease is in the exact same category as all these other dementias. I am so sorry about your mom. It must have been devastating to deal with, especially when doctors didn't have a clue about any of this.

The tangles in the brain in frontotemporal dementia are called "Pick's bodies." They have found similarities between what happens to brain cells with FT dementias and what happens to brain cells in ALS, and research is going on like crazy, so I think they're soon going to start getting clues on how to stop all this from progressing. And also how to prevent these diseases and (gasp!) cure them!

That day is coming!

Thx again,
BethU
 

rose

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One good thing: I FINALLY found a connection between PSP and FTD and ALS! Reading about FTD last night ... this whole thing is really bugging me, as you can see! ... I came across the statement that "there is overlap between PSP and FTD." I have no idea what the overlap consists of, and will have to go back and read the article when I'm not falling asleep ... but perhaps it simply means that there are symptoms in common.

So, the fact that ALS does not usually present with vision problems doesn't mean a thing, because PSP does, and it "overlaps" FTD. So if FTD is my primary, underlying disease, as it is in about 20% of ALS cases, then ALS symptoms are simply added on to the underlying dementia (FTD/PSP) symptoms.

That is a relief, as it seems so weird and scary that three different neuro problems could have started in me simultaneously. Not that I want any of it, but if I have to have it, I want it to make sense !
[END QUOTE]

You could be a detective or forensic records investigator! I wonder if your neuros understand all of this, and no one thought to tell you.

I have learned a lot from you :)

I don't know that much about the prism technology, but my eldest son was born with a congenital eye problem called Horizontal Nystagmus. Glasses for the most part hold his eyes steady, and he has told me that even when others observe them moving, that for him, his vision is not affected, things aren't moving on his side of the eyeball!

Take care, :)
 

BethU

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Or, I could have it all wrong! :)

Actually, it was the speech pathologist who pointed out that my swallowing is more characteristic of PSP than ALS, not a neuro. And when I looked into PSP, I discovered that my vision problem is a textbook case of PSP vision issues.

And Neuro #2 had diagnosed me with PSP, although he said it was so rare it was unlikely I would have it.

It was also the speech pathologist who said my language issues are "probably" FTD. I had started noticing the behavioral issues as "issues" last January, when I started getting bouts of euphoria alternating with aggression, and had asked a neuro about it at a conference, and she said "probably FTD." And the ALS case worker agreed.

So now I have to start conveying this to the neuros. I think I'll just write out my language and behavioral issues, and hand it to Dr. G. next week and see what he makes of it.

Thanks for the information about your son and the glasses. That is really good to know.

BethU

Now, like you, I can move on and just see what developes next!
 
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