Hi, Debbie ... it's FrontoTemporal Dementia and about 20% of ALS patients have FTD as well as ALS. As I understand it, the dementia always presents first. So a small percentage of FTD patients might find that their disease eventually progresses to ALS, but it doesn't work the other way around. ALS patients don't progress to FTD.
FTD is sometimes mistaken for Alzheimer's Disease, but they are completely different, and take place in different parts of the brain. AD patients lose memory and cognitive abilities; FTD patients don't.
There are two versions of FTD, depending on the side of the brain it's on, left or right. One side affects language skills. The other side affects personality and behavior. Typically, FTD patients become insensitive to other people, and often say rude and offensive things, or are aggressive or impulsive.
The good thing about the connection between FTD and ALS is that researchers have identified some of the cellular damage that happens in FTD, and they have found the same damage in ALS cells. So this is a promising area of research.
Hi Debbie, my mam has FTD with MND. It rare to get both.
Bethu, FTD has a huge impact on cognitive abilities. My mother is now like a 3 year old (in her mental abilities). I was under the impression the FTD and MND can occur as overlapping conditions and either can prevent first............but maybe I'm wrong.
Hi, Cariad ... i'm sure you are probably right, as you have much more experience, and I'm just doing Google research. I read the statement "dementia presents first" in one of a gazillion articles online, but didn't make a note of the source, and only came across it in one article.
If they overlap, and can either one present first, that makes it more interesting as to what the relationship between them is. It seems that these overlapping conditions must contain the key as to what is going on.
I'm so very sorry about your mother. It must be a very difficult struggle as a caregiver to have to deal with someone with both conditions.
I came across the reference for the statement about dementia presenting first when ALS and FTD coexist. It is on the Columbia University College of Physicians and Surgeons website. This is what it says:
ALS dementia is now recognized as a frontal dementia in which there is motor-neuron disease. Afflicted persons usually are first symptomatic with dementia. They may not present to a neurologist until they have ALS, but families usually report that personality changes preceded weakness, fasciculations, and motor findings.
But ... note, it says "usually." And considering how much is unknown about these two conditions, I bet you're right about it being possible for either to present first. And there is definitely overlap!
When you say your mam has the capacity of a three-year-old, do you mean emotionally or intellectually? It must be very hard to deal with her situation.
I checked out of curiosity, and either can present first. In my mam's case, the first thing we noticed was slurred speech and delusions. The speech was largely dismissed by professionals, who concentrated on the delusions. As time went on, and after the FTD was diagnosed the bulbar problems worsened. My mam began choking, gagging,etc and the MND was discovered (her tongue was fasiculating). But with hindsight the slurred speech was the first MND symptom.
When I say like a 3 year old, I mean cognitively. Her understanding is really poor. It's not just that she can't understand language, she can't think for herself (but her memory is mostly o.k so far). As an example, yesterday she soiled herself. I filled the sink with water/soap and began cleaning her. Her language is poor so I showed her the dirty flannel to show her I needed to clean her. I looked up from my task to see her attempting to dip her toothbrush in the sink to clean her teeth.......
Emotionally she is blunted. She doesn't notice if I sob etc. She was largely ambivalent when my lovely Dad died suddenly a year ago (they had been childhood sweathearts, married for 44yrs).
I notice in another post you are concerned about having FTD. If it makes you feel any better, one of the diagnostic criteria is lack of insight that anything is wrong. What I mean is that people with FTD don't realise that they can't locate words/use wrong words/slur/talk nonsense. I frequently can't think of the right word!
Thank you so much, Berni ... I'm positive you are right about presenting either way. I should be leery of any website that says "always" for any neuro problem.
Your poor mam ... and you, too. What a dreadful situation. It sounds like you have the patience of Job, and are dealing with her so kindly.
I am worried about my own state, as I have had a parade of symptoms that indicate FTD. But many of these symptoms seem to last about 3 or 4 months, and then disappear, so I don't know if they are significant enough to mention to a neuro. I hesitate to mention a new symptom to the doctor if there's a chance that it will disappear in two weeks.
Thank you for your reassurances! I wish I'd had more neuros who said, "I don't know," instead of throwing such a variety of diagnosis at me. I feel like they're telling me, "You have measles on your left arm, chickenpox on your right, and scarlet fever on your knee."
Thank you again very much for the information, and your kindness.
I am absolutely CONVINCED that my mother experienced ALS-related dementia before her physical symptoms began. We thought she was having mini-strokes. It wasn't until she was pretty bad w/ALS symptoms that she got diagnosed with it. She was 78. I hear that is kind of late. I trace her dementia back to 2003.
My mother passed away after a very strong battle with ALS on 8/31 of this year. However, I must say, that the good thing of her having this mild dementia was that she was totally UNAWARE of how ill she was. She never thought a thing was wrong with her. What a blessing.
I agree, my mother was diagnosed Oct '07, and her attitiude and some of her actions are so different its a little sureal. She is on bipap and her breathing is pretty bad, but the behaviour sometimes is so strange. She argues with her grandchildren over sweets and even robs them from them and will stuff them in her mouth, she says outragous things sometimes, one of her friends was ill and she told her she wont get better and thats it and that she'll see her in heaven! Sometimes she is really abrupt and also very selfish to other peoples needs, not like her at all. My boyfriend who didnt know her that well before diagnosed sometimes gets annoyed with her as he thinks she treats me so badly. My 7year old nephew (her grandson) hates to visit as he says his granny is mean. Its terrible to think he will never remember the good times!
But like others have said, Im glad that she is not too aware of what is fully happening, although she does say that she is dying.
Take care everybody
I started on the clinical trial at UCLA today for the new emotional lability drug "AVP-923." I am actually feeling quite a lot better already ... which MUST be the placebo effect! I am so suggestible, they could give me an M&M and tell me it would make me 19 again, and I'd start doing the twist.
I also took my list of symptoms ... both my "dementia" and my "PSP" symptoms ... and the woman conducting the trial went over them with me very carefully. I told her that I am not having depression ... my big emotional problem is anger and frustration. If I'm under stress ... or even when I'm not ... and people "refuse to understand me" I just lose it. And, frankly, having ALS really p****s me off.
She said that's not dementia ... that's ALS, and she'd react the same way. She said there are three aspects to ALS ... nerves, muscles, and emotions. FTD is a different animal, and she didn't see any indications from my list that I had it.
As to the PSP ... I didn't ask her. She did not remark on the double vision or swallowing, and I'm just going to put them down as urban legends. I'll get prism glasses, and solve the reading problem myself. Sometimes the human body doesn't behave the way textbooks say it should, and I can't see any solution for this except to deal with it.
I had been certain of the FTD, however, as I had had some extraordinary episodes of euphoria last winter and spring ... amazing, transcendent experiences. So (Sorry, Wright ) after I was diagnosed with ALS, naturally I Googled "ALS euphoria" thinking I would get something like, "ALS makes people spiritual," and instead came up with dementia! So I've been reevaluating experiences like mad to see if they fit the definition. (As I have shared endlessly.) I do crave a "narrative" that will make sense of all this ... we live by telling ourselves stories ... but when has life ever made sense?
Anyway, I have decided that ALS is enough for me to handle. If other conditions arise, they'll just have to take a number.
Well, that confirms my faith in myself and my ability to read people. I couldn't for the life of me figure out how you can be so articulate, funny and wise andhave dementia! I was seriously beginning to worry that if you have FDT, then the rest of us are in big trouble! :wink: Cindy