I read the review of FTD. I agree it was an excellent review. The only problem I have about FTD reviews is they always list the symptoms of acting out, personality change and no insight into the disease as if it was present in every FTD patient. I know this is because even many FTD specialists believe this to be true. After I received solid evidence (a review of my MRI of the brain and neuropsych. eval by a top specialist at Johns Hopkins) I happened to see a few other FTD specialists because we moved and one of them told me that I absolutely couldn’t have FTD because I didn’t have the hallmark symptoms of acting out, personality changes, and no insight into my disease. He refused to look at my evidence.
I have met 11 other people with FTD who either don’t have these particular behavioral symptoms or didn’t develop any of the acting out behaviors for several years. The two people of this group who are having some acting out behaviors are fairly well managed on medication and they still have insight into their disease.
It is frustrating to me that the FTD Support community is basically set up for support for caregivers. I totally agree that they need all the support that they can get but I get discouraged when I read an article or information about a seminar and there is always a blurb that states this is recommended for caregivers, physicians, etc. Everyone, of course assumes the patient is off in la la land so the information would not be beneficial to them.
Now the few of us that I have met who don’t have the rapid behavioral change with the denial of illness meet in a chatroom twice a week. I am always on the look out for someone else who has FTD who is able to communicate and has insight into their disease. I’ve noticed at the forum I belong which I think is the best support group for FTD, these people have often posted once, no one else with FTD responded to them and they fell in between the cracks.
I think there may be many others who might have the variant of FTD without rapid behavioral changes but there is no way to find out because the way most people with FTD are diagnosed is by the “hallmark” symptoms.
Those of us in our group just got lucky for one reason or another.
I also left you a comment about LBD because I think I might bave Lewy Bodies.
My diagnosis of FTD came after several years of different symptoms than this article talk about. I do not have the personality changes/inappropriate behavior. Mine seems to be aphasia…language problems. Can’t think of the word I’m trying to find/use the wrong word (which often rhymes with the right one), dhesitant speech, and incomplete sentences. There are several different presentations of FTD. This is a good site for FTD. http://www.ftd-picks.org/
This article does explain how some people act when they have FTD. Those behaviors are displayed when the frontal lobe is affected more. However, if the temporal lobes have more damage, they have more problems with language, as the article below mentions.
I believe that I have FTD with expressive aphasia, as described below.
“Aphasias are a group of disorders characterized by disturbances in speaking and understanding language.
Receptive aphasia causes impaired comprehension. Expressive aphasia is reflected in odd choices of words, the use of partial phrases, disjointed clauses, and incomplete sentences.”
You may also get good information from the Association of FTD site:
I have Early Onset Dementia at the age of 48, I was diagnosed two years ago. I have Vascular and Frontotemporal dementia’s.
I assume that I have personality changes as not I don’t like being in large noisy crowds, it seems to disrupt my thinking so much more.
I have had multiple strokes and the doctors say this is the culprit of the dementia as it doesn’t run in my family. I have mild cognitive impairment with memory loss, depression, and good and bad days.
I have to agree with Soulsilkee, as there are not any support groups for the dementia patients. I do agree that the caregivers need all the support they can receive. As a patient that still has cognitive capabilities we need a support group where we can openly talk about FTD and give each other the support we badly need.