Excellent NY Times article

This article pretty much hits the nail on its proverbial head:

http://www.nytimes.com/2012/05/06/h...for-better-for-worse.html?_r=1&pagewanted=all

Excellent article! Thanks for sharing.

Made me cry

Shared this with my family via e-mail, but I wish the article had mentioned how the disease occurs in conjunction with ALS

Sharlene... it does. It also mentions the new research that seems to be indicating that in these cases, the motor neuron disease seems to be a subset of the FTD, rather than the FTD being an ALS variant. UCSF is doing a lot of research about it. It makes sense, as many of us notice FTD or personality changes before noticing physical changes.

Well, that was was heart wrenching and very informative. The poem at the end, I previously posted here on the forum. That made me cry...

Katie that was one of the better newspaper articles that I have read. When it said, "Still others affect movement, leading to disorders that resemble Parkinson’s or Lou Gehrig’s disease (also called amyotrophic lateral sclerosis or A.L.S) ", does that mean that the FTD is a separate disease entity and people like your husband had FTD that lead to ALS symptoms, but he didn't necessarily have ALS? I always had it in my head that some people with ALS develop FTD.

Good question, Laurel. this confuses me as well. I think some have ALS and develop FTD and others have FTD and then get diagnosed with ALS... but yes- is it TRUE ALS, or a copycat?

I think this is too hard to diagnose. Looking back, I can see the signs of FTD, but I still don't know which came first.

I remember being soo worried that Ray would/was developing some sort of dementia... I eventually found out that ALS in fact DOES affect the mind- especially in those who have lived awhile with it. He had problems with concentration and short term memory. I cant even imagine how it must be to actually have the diagnosis of ALS and FTD. My heart goes out to you folks.

The reason we all get so confused is because the researchers still can't sort it out. Because the physical symptoms of ALS are (believe it or not) easier to diagnose, it frequently is diagnosed BEFORE the dementia. It is only recently that they have started to think MAYBE the FTD is the primary illness and the ALS is the subset. As others have stated, it is quite plausible that research will ultimately find that this is a cluster of similar but not exactly the same illnesses. I know Glen's FTD was misdiagnosed several times...including a brain scan that came back with a report I will never forget: "Some atrophy commenserate with aging." Problem was he was only 56 at the time!

I have seen several times now where ALS is listed as a Frontotemporal Disease. It seems the world of FTD seems to acknowledge ALS more then vice versa. It looks like they are learning more and more how they are related - though more of the research seems to show up on the FTD front. Every ALS research study Jim has applied for has rejected him due to ALS while FTD studies welcome the combination - even search it out. The ALS clinic seems to ignore the FTD aspect but not vice-versa.

The article really hit home - well written.

Shelley... I agree. I think the concensus thinking has always been that ALS doesn't cause cognitive issues.. or if it does it's in such a small percentage of PALS that it's really not worth worrying about. It's something that ALS families and medical providers seem to cling to.. we were certainly told that after Glen's original diagnosis, even though he was clearly into full blown dementia. People here and in other forums have responded to Glen's story with statements like "Oh... so he didn't have ALS?" Hopefully the research being done by people like Dr Loemen-Hoerth at UCSF and other doctors around the country will continue to raise awareness in the ALS community of the link between the two conditions.

Dad's neuro said that 'they' used to believe that people had ALS or people had FTD and there were some 'relatively rare' cases where they overlapped, but they didn't know why. He said now they know that there is a much larger overlap than they used to believe, but they still don't know how or why. At lease he acknowledged it and was will to discuss it with me. He said they now believe that the FTD can be present (and usually undiagnosed) for 10 or 15 years before the ALS diagnosis. Not sure how that fits with the assertion that "patients survive an average of only 8 years after the diagnosis". Perhaps because it takes a long time for anyone to realize there's something seriously wrong? It surely is a frustrating mystery.

I know we can trace Glen's FTD symptoms back at least 7 years before diagnosis.. much of that time was spent knowing something was wrong but being told it was me, Kevin, nothing was wrong, it was some minor depression, it was alcohol abuse...etc etc etc It wasn't until the ALS symptoms surfaced that we started to get a diagnosis.. the FTD was diagnosed by backtracking after we got that ALS diagnosis. It is apparently very hard to get the neurological community to give up that "cognitive overlap is VERY rare" idea.