Hi

Has anyone beeen diagnosed with Semantic Dementia? If yes, pls can you share the symptoms / diagnosis etc.

Hello, Ritesh, Welcome to this message board. I never heard of semantic dementia but I did a search and found this link from the U.K.
http://www.cerebralfunctionunit.co.uk/SDinfosheet.html. You can do some more searches. Were you diagnosed with semantic dementia? Tell us about yourself.

Iris L.

Hi, ritesh. Semantic dementia is one type of frontotemporal dementia (FTD), and some types of semantic dementia are considered subtypes of Primary Progressive Aphasia (which is a type of FTD). This whole family of dementias is very ... confusing, and the answers to the questions you've raised keep changing as more is learned about FTDs (also called FTLDs). The best references I've found so far:

http://www.annals-general-psychiatry.com/content/6/1/15

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16718704

http://brain.oxfordjournals.org/cgi/content/full/130/10/2636

http://reslounge.com/c3/Frontotemporal%20Dementia%202007%20Neurology%20Graff.pdf

http://scholar.google.com/scholar?hl=en&lr=&cluster=8207343742829414560
(for this one, just click on "cdlib.org" in the first link that Google Scholar pulls up, it should give you a .pdf of "An overview on Primary Progressive Aphasia and its variants" by S Amici et al)

I've found the abstract of a very recent paper that looks interesting, and have emailed the corresponding author to see if he'll send me a copy. I'll let you know if he does.

(Iris, ritesh posted earlier on "Alzheimers / MCI at 32 years" that his very young wife had been diagnosed with MCI. I hope I'm wrong, but I assume his wife has progressed.)

Dear ritesh: Though the reason for you being here is a sad one, it is good to hear from you again. How are things going with your wife? What are your biggest challenges at this time?

Since Semantic Dementia is usually linked to FrontoTemporal Dementia, (FTD), I'd like to refer you to Google the site, AFTD; this is the Association for FrontoTemporal Dementia.

Also, the University of California at San Francisco, UCSF, has a large departmeant dedicated to the different dementias and also specialize in FTD.

The name of the department is, The Memory and Aging Center. You can Google this at
http://memory.uscsf.edu/

I wish you well and hope you are doing alright.

We will be thinking of you.

Johanna C.

thanks for the info.

The diagnosis of my wife is still on. We still need to do a FD-PET. Last month we did an EEG and that was normal.

I am just too scared to do a FD-PET and other neuro tests as I am fearing the worst.

My wife has been treated for depression since June'08. All her depression symptoms have disappeared due to medication and therapy. But what remains is memory loss (but very good 99.9% recollection when prompted), sometimes having trouble finding words when talking. sometime difficulty reading newspapers. Hence my question on semantic dementia.

Hoping that all will be fine.

Ritesh, I have a thought about your understandable & natural fear of the worst.

Look at your wife. As you're there with her, you're fine, aren't you? Sure, lots of serious concerns, but at this moment, you feel like you're handling things, don't you? Well, you're doing this well, and she already has whatever it is. Why should how you feel, how you carry this burden, be any different just because a new label will be applied?

No matter what her illness is, she has it now, and you're coping. You already are, what you hope to be. Take a deep breath, and go spend some time with your wife.

Dear ritesh: This must be extremely difficult for you and be causing significant stress.

There is some wisdom in Alan's writing. I know the earliest times, waiting for a diagnosis so one knows exactly what one is dealing with, are some of the most difficult and confounding times. At least it was for me in regard to my mother prior to receiving an accurate diagnosis.

I must say, you are a wonderful, supportive advocate for your dear wife and she is blessed to have you by her side.

Do not fear the PET Scan, it will be good to finally be able to put a frame around the picture. Knowledge is power, and you will hopefully have an idea which road to travel down once a diagnosis is clear.

No matter what the outcome of the scan, you will be able to move forward with strength and dignity. You are a very proactive person, so I have no doubt you will rise to any challenge.

Always remember, you also have us here to speak with and support you as much as we can. One thing is certain, we truly understand the difficulties secondary to our own experiences.

Could the medication your wife is currently taking have any effect on worsening or causing some or all of her symptoms? Of course you would not discontinue the medication without a doctor's direction, but I wonder if that question has been asked.

How is your dear wife feeling about all of this?

Please do let us know what the PET Scan has to say, and we are all pulling for you and hoping for the very best.

Johanna C.

Ritesh, if that's the reason for your question, forget the links about semantic dementia. Many, many, many different things can cause the symptoms you describe.

Something as simple as stress can make it difficult to find words when talking, for example. If you use the "find" button in the colored bar at the top of the page and enter "caregiver dementia", you'll find loads of posts from caregivers who have this problem (me included.)

With MCI, the tests may not find any problems. Your wife could stay the way she is now, without ever getting any worse, or she could even revert to normal.

And even if the tests do indicate a dementia syndrome, not knowing what is wrong with your wife is much worse than knowing. When she finally has a diagnosis, you will know what you're dealing with, and you can take steps to help her. It truly is better to find out.

Dear ritesh: JAB is quite correct. It may well be that whatever is taking place is something that can be dealt with much easier than thought.

We will all be waiting to hear the results of the PET scan.

In the meantime, do know that we are sending warm hugs and kind thoughts to you, your wife and your family from our side of the world to yours.

Johanna C.

ritesh,

Your description of your wife sounds like me. My most frequent problems are word finding and difficulty reading. I cannot read fiction. I get lost too easily. I can read technical manuals if they are not too in-depth. I can read newspaper articles if they have a good flow of information. As soon as the information becomes abstractly organized, I am done for.

I have had all of the tests your wife will have including the FD-PET. I also had MRI-MRA.

All of the tests were normal except a EEG done with Quantitative analysis, Qeeg. It showed a serious problem with information gating, decreased processing power and the occasional "zone out" where my brain just got lost trying to perform the task.

Neuro-psych tests showed serious memory deficits and slowed information processing.

But, there has been no causation identified. SSDI has awarded me Disability status with a psychological causation, probably because the neuro-psych data was so overwhelming with comments regarding suspected psychological causation because nothing else was indicated.

I would agree with some of the others that an accurate diagnosis may be difficult. Instead, the best approach is understanding the dysfunctions and learning work-arounds or other accommodations.

My wife can be very effective at helping me with word findings. After 29 years of marriage, she can see my thought direction and fill in the blanks.

Once she learned that these problems were real and not just some lack of attention, she became much more helpful and far more patient with me.

As others have said, the reality is how she is functioning, regardless of any diagnosis or fancy name. The most important concept for you to consider is to accept her as she is right now. Accept that she may get worse. Does that change who she is to you? That is for you to decide.

It can be a struggle to understand these issues but once you commit yourself to understanding and accepting, the road ahead can become a bit easier.

You might think of it like swimming at a beach with a rip-current (under-tow). If you try to swim directly back to shore, you will become exhausted and possibly drown. If you accept and understand that you are dealing with a rip-current, then you can make a correction and swim parallel to the shore until you are out of the rip-current. Then you can easily swim back to shore.

Fighting the current reality will only exhaust you both.

As I watched my mom care for my father as he declined with AD, at first, she would get frustrated with him, thinking he was just being disagreeable. Then she would get frustrated thinking he was not understanding. Next, she would get frustrated thinking she was failing at helping him understand. When she finally realized that neither she nor my dad had any control over this disease and its impact on those nearby, she accepted his condition and was able to work with him.

Her acceptance also gave him permission to accept his condition. The fear of upsetting those you care about and who care for you can be overwhelming. Once the patient realizes that their condition is not held against them, they can accept it and go on.

This does not mean you wont need to grieve the changes. You may need help understanding how to process your grief. She may need help in grieving the changes she see in herself.

A good local support group will benefit you both. They may be able to refer you to some counseling.

Today was my turn to go to the Dr. Alan you should become an MD or DO. You said basically what the Dr. said. I have pretty severe vasculitis throughout my body- hence the steroids. He said none of them are completely sure if it the Lupus, Diabetes and maybe even some AD thrown in. Basically they are treating the symptoms and trying to keep my veins as open as they can. I must have been having a pretty good day as I scored a 27 out of 30. Last time it was 22. He said it wasn't that I was reversing the process, they have just found what's working at the present time. Guess I can't complain. I see the vascular surgeon Thurs. He also told me the same thing as you Alan. " Does it really matter what's causing what"? ( which disease for which sympton )All in all he thought I was doing great.

Judi,
Glad to hear you are doing better. Good news is good news. Just enjoy it.

Please, let us know what the surgeon says!

Judi, thanks for all the kind words.

I've worked with doctors a lot over the decades. I basically like and trust doctors, if I'm sure they're really trying. What I mean is, they have to see a lot of patients a day, and you have to catch their attention to get their best work. = That's just my opinion! =

And really, labels might make us feel better, but the real story is for our doctors to treat our symptoms. What does it matter if a neurologist calls it "brain go bye-bye disorder," as long as our symptoms are treated as best as possible?

27 out of 30 is great! Must've caught you at your peak?

Dear Tickles and others,
I've read several times people being scored 27 out of 30, or something out of 30. What test is that? Is that the Mini Mental Status Exam? Please elaborate.

Iris L.

Oh, and a perfect score is 30.