BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
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
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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