Hi Everyone,
My husband and I spent the day yesterday at UCSF to finish out his evaluation there in the Memory Disorders Clinic. Their diagnosis is semantic dementia. It is a degenerative disease with no cure and no known effective therapies. I heard some people may use namenda off label and there is a study starting up on it. Apparently SD looks a lot like AD in its advanced stages. The atrophy in my husband's left temporal lobe was shocking. I think I kind of knew we were going to be told this diagnosis, but it is very hard hearing it from such a qualified group as those at UCSF. My husband is 57 and our kids are 8 and 1. I'm terrified. I would like very much to hear from anyone with knowledge or experience with semantic dementia. I posted here a few weeks ago before we got this second diagnosis and I rather doubt there is a parallel or similar SD support group out there, so I hope you don't mind me posting here. LMB

Lee, you are welcome here regardless of the type of dementia. This is a forum for ALL types of dementia, not just Alzheimer's. I have seen others on here with SD, hopefully they will post to you soon. I am a young person first diagnosed with EOAD in 2002, now after almost 5 years of eval's and follow-ups and symptoms my Neurologist whom is the best here in the Midwest and I trust with my life has changed my diagnosis to FTD (Frontal Temporal Dementia). So keep posting. You might have more responses if you post in the Caregivers Forum?

Hi Lee:

My husband was diagnosed with Alzheimers at age 52 last September. I'm not familiar with Semantic Dementia, but I wanted to say that I understand what you're going through having small kids at home. Our boys are 9, 6 and 18 months, and I know that going through this is hard enough, but raising kids at the same time is especially tough. Does your 8 year old understand what is happening with his Dad? I know that our two older boys have some understanding, but not completely, it's a tough thing to explain to a kid. Anyways, if you ever want to talk, you can email me (klbuckman@att.net)

Take care,

Kelly

Tracey,
I have read some of your other posts and I appreciate not just what you say but how you say it. I think its impressive in the extreme for you to be 5 years after your diagnosis and be as articulate as you are-it gives me hope for my husband. You and I are the same age, btw. When is your birthday? What sort of FTD were you diagnosed with? I know there are several kinds. My husband's brain atrophy is localized to his left temporal lobe, his language center. Thank you for posting to me-this is a wonderful forum indeed. Lee

Hi Lee, there is alot of hope for your husband and others in the future in beating Alzheimers or even FTD. The only difference in the two is the proteins in the brain that seperate the two. Otherwise most of the symptoms are the same including aggression though it is more so with FTD. At this point my neurologist only says FTD. I have actually written him a letter with some questions that I thought of after I left his office on my last visit and that was one of them, so maybe I'll have a better answer soon. My atrophy and lesions are on the right side which controls behaviors, thoughts, processing information, etc.
Never, never give up hope as long as your husband has a fairly good quality of life. I encourage you and even your husband to become Advocates in speaking out for Alzheimers Disease. The Alzheimer's Association is named as such but they are here for ALL types of dementias including SD, FTD, LBD, Picks, etc.
By the way, my birthday is June 29th.

Hi Tracy,
Tracy, you also give me hope so thank you for being here. I am 48 and just began seeking help this year. So far, I know I have an abnormal EEG with moderate left and mild right temporal cerebral dysfunction, a PET scan with nonspecific relative hypometabolism of the temporal lobes, and a palmomental reflex. My current diagnosis is early memory loss. I return next week to get results of my neuropsych testing and the next week to see a dementia expert. I'm beginning treatment for depression next week too. I try to stay hopeful, but it is tough. One question I have for you is whether you are aware of any Christian based forums for dementia patients. I truly believe prayer can work miracles regardless of all these tests. That gives me the most hope.
Thanks
Beth

Thank you Tracey. You inspire me. I'm feeling better-I generally do when I'm with my husband and I can see all the things he can still do and all the ways he still communicates well. I hope you get answers to your questions. I think I remember reading in one of your posts that you have a child--how old?

Beth, welcome to our community. You are right, staying hopeful is extremely tough but hope is all we have. That why being an advocate to me is so important. I have looked for christian based forums for dementia patients but have not found just that. I am a member of several groups including one that I founded in 2004 that are very warm and supportive groups. If you would like more information feel free to e-mail me: tiger@todays-tech.com
YES, I do believe in the power of prayer, God is seeing me through my mothers passing on Saturday.

Tracy:

So sorry to hear of your mothers passing. Is it OK if my husband emails you? He has EOAD and is a christian as well.

You give me hope that my husband (who has a great attitude) will hopefully be able to slow the disease down by staying involved & active.

tkb, thank you for your condolences. I would love it if your husband wished to e-mail me. tiger@todays-tech.com
If he wishes, he may call me as well:
417-345-1709

Hi Lee,
I'm usually on the caregivers forum but was just looking into this one for a sec. 1st let me say I'm so sorry for you & hubby...I feel it must be worse & more complicated etc at your ages than for someone like my mom (88).

Anyway I wanted to let you know there are several Christians here. You could start a thread asking for prayer or something like that.

I've tried finding an all christian site on the web but no sucess altho I wasn't sure if it's because I'm not really too familiar with the web. I found a link on this site to a site that might be run by christians....I've never asked, it just seems that way, ya know what I mean?
It is www.mycarelink.net .
I can tell that there are christians there & it's very caring & sorta "homey" and smaller than this one.

Lee,

Hi. My name is Polly. My husband was diagnosed with Alzheimer's and Semantic Dementia last October of 2006. I am sorry that we have to be here and that must be difficult with children 8 and 1. Our children are 18 and 22. My husband started having symptoms at age 58, but he is now 60. The atrophy in my husband's left temporal lobe is quite shocking, too. My husband is on Aricept and Namenda. It's very difficult to have a conversation with him. Are you finding that to be the case? I am trying to learn to be patient. Where are you located in Northern CA? What are your husband's symtpoms? Would love to chate more.

Polly from Pilot Hill, CA

Polly,
We live in the bay area but we are moving to Northern Virginia in July. My husband's initial diagnosis was Alzheimers but I questioned it as he lacked the global impairments of Alz--also, I think with a diagnosis this devastating, one must get a second opinion. Thankfully, my husband's symptoms are fairly mild--he is still able to work (he is a research scientist: engineering geologist). At times its hard to talk with him but we can usually work through whatever confusion there is --altho it can be quite frustrating. Patience is not always a given or easy for me. His most noticeable symptom is loss of word meaning-people, places, things. I can usually tell immediately (I pay much more attention now) if he doesn't get something and I'll ask him if he doesn't understand--thankfully, he doesn't fake it, and then I'll find other words and try again. The other blessing is that he has no disorientation in time or place. We were told that SD looks a lot like AD in the end stage. I have no idea how quickly this is going to go (maybe its better not to know...). Please write me back--I get a lot of strength from corresponding like this and I appreciate very much that you wrote me.
Lee

Sodapop--
Cute handle. Thanks for your kind note. I don't think that this disease is kind to anyone, no matter their age or family circumstance. I have not at this time turned to religion but I am Christian and I do pray occasionally. I'm afraid I would be a disappointment to others on a Christian message board however as I tend to keep that part of my life more private. The fact that there is a board like this and that people congregate on it and reach out by responding to others, are helpful, thoughtful and sending good thoughts is just what the doctor ordered for me.

Lee,

I am so glad you wrote me back. This is the kind of dialogue I crave. Sometimes it's so difficult to talk with family because they really don't truly understand. I am so glad your husband is able to work. I sought a second opinion too. In June of 2006 my husband was diagnosed with Pick's disease because of the frontal lobe atrophy noted on CAT scan and MRI. I like you did not feel my husband had that. He did not exhibit the bizaare behavior that goes along with Pick's. I sent him for 8 hours of cognitive testing and that's when they diagnosed him with Alzheimer's and semantic dementia. He is very oriented to place. He is not always oriented to tinme. He doesn't know what day it is or what season. He can't figure things out like he used to. What's your husband's standard mini memory exam score?

My husband started out using the incorrect words for things, but now he can't find words very well and he has a lot of trouble following conversations. If I ask him to bring me the suntan lotion, he will bring everything out of the cupboard because he does not know exacly what I asked him to bring. The ncurologist keeps telling me he scores low on the standard mini memory because it's all language based and his language is so compromised. He laughs all of the time.

Why are you moving? Did your husband get transferred? My personal e-mail is pollyp53@dishmail.net. Feel free to e-mail me any time. I would love to continue to chat. This really helps me a lot.

Take care,

Polly

Polly and Lee,
My husband also has dementia. He just turned 46 and we have 4 children. Only one is still at home age 13. It took 5 years for him to get diagnosed. Finally took him to the Mayo clinic. I have wondered if the SD is really what my DH has b/c his speach is so impaired. The thing you said about the suntan lotion and him bringing you everything but is so familiar. The MD at Mayo didnt seem to think it made any difference if it was a form of FTD or AD b/c he thought it was tx the same and the prognosis was the same. It seems like no one really wants to be aggressive in treating him. I work in medicine and see us (cardiology) be so aggressive even in folks in their late 80's at times. Here this man is 46 and they say well, try Aricept and Namenda and that is all we can do. Sorry for the vent. One of those days. I would love to e-mail w/ someone also. ddck4@hotmail.com. Annie

Type SD in your browser ther's lot on it.

quote:

Originally posted by Annie44:
Polly and Lee,
My husband also has dementia. He just turned 46 and we have 4 children. Only one is still at home age 13. It took 5 years for him to get diagnosed. Finally took him to the Mayo clinic. I have wondered if the SD is really what my DH has b/c his speach is so impaired. The thing you said about the suntan lotion and him bringing you everything but is so familiar. The MD at Mayo didnt seem to think it made any difference if it was a form of FTD or AD b/c he thought it was tx the same and the prognosis was the same. It seems like no one really wants to be aggressive in treating him. I work in medicine and see us (cardiology) be so aggressive even in folks in their late 80's at times. Here this man is 46 and they say well, try Aricept and Namenda and that is all we can do. Sorry for the vent. One of those days. I would love to e-mail w/ someone also. ddck4@hotmail.com. Annie

My wife had to quit work in 1996 because of her memory. We have been to doctor after doctor ever since then. Seen the best at Johns Hopkins in Baltimore, Md., Univ. of Penn in Philly, and everybody in between. Had the Pet scans, Spec scans, Mri's, Psychological tests 3 times. She was diagnosed with depression, mental problems, and even faking her problems. She continued to deteriorate through the years...couldn't cook, do laundry, finances out of the question, couldn't drive any longer...after the third accident, I had to take the keys. Finally, in March, the last Mri and the written tests with yet another doctor, she was diagnosed with Semantic dementia. Doc said meds would not help her with this and suggested trying speech and occupational therapy. They may help for a little while. Other than that, just try and enjoy life with the time she has left. We are both 60 and we are trying to enjoy what time we have together.

Hi Dave, Your story is very interesting, frustrating and way too common. How are you doing? Do you have children that help you or are supportive? My biggest support is my 75 and 79 year old parents. Are you still working? My DH tries so hard but... Have you tried the OT/ ST? I just wish that I didn't feel this pain so intensly. We have good days but they seem to make me miss him more. We just got back from a cruise that we had talked about going on for years. We had a great time and he did better than I hoped. Guess I need something else to look forward to. Annie

Annie and Dave,
Annie: Welcome back from your cruise--where did you go? I am so glad you got to do something fun like that--you deserve it. Plan your next vacation--that's what I'd do...even if its a short one to a nearby place.
Dave: I am so sorry about your wife. The impairments you describe really scare me to death--I am very lucky that my husband is still able to drive, cook, work and handle finances (with help). His symptoms are mild. I think I have softened a lot as a person (the zoloft probably helps too)--I am more patient and have fewer vocal outbursts when I get frustrated...How long before she quit work did you notice problems? I would like to compare her onset of symptoms with my husband's. One more question: is her brain atrophy localized to the left temporal lobe, or is there atrophy elsewhere? thanks and take care, Lee

Hi Lee, We went to the Western Carribean- Grand Cayman, Cozumel, Costa Maya, and Belize. Steve did very well on the trip and had lots of fun. I am trying to focus on the now and not look ahead too much b/c it is so depressing. I thought the driving would be devastating but it has been inconvenient more than anything. I keep telling him OK- lets just focus on what you can do and realize that these are still the "good days". I am going to take your advice and start planning out next trip. Annie

Oh, Lee I still loose it sometimes like when he lost his ID on the ship before we were leaving to go to shore. I cried. Then I found that it was my fault - I had taken it. Once I got it through my mind that he really can't help it I became much more patient. Hope you have a great day.

keep your chin up!! I know what you are going through, as my husband was diagnosed when he was 55 with AD, we have 2 children 13 and 8. This can be tough on the family!! I find that it is best for all of us if I am taking care of things and try to keep the pressure off of him, which in turns helps ME..There are days I WANT TO RUN AWAY and days that are really good.

I know what you mean about wanting to run away. I have had to really adjust my expectations for fun and happiness and I don't take much for granted in my life the way I used to. I guess you could call that a silver lining. Have a great day!

Hi Annie, Lee and all:
My wife's memory and confusion problems were evident before she had to quit work in '96 but she also had other problems such as Fibromyalgia and Cronic fatique syndrome which in combination, made her unfit to work. The memory problems kept getting worse but she was able to get by on many notes we had written for her. Her memory symtoms came in spurts. She would get worse then hold her own for quite a while before she deteriorated some more. Her language problems really became notiable about 10 months ago. She is now at the point where she says a lot without saying anything meaningful. She doesn't understand a lot what people are saying to her. She has started showing aggression in her speech about 3 months ago. She tends to get angry if she is corrected. And now she is starting to hoard things. She will take cloths and almost anything else and put them in plastic bags such as her toothbrush, hairbrush, shirts and socks. I just bought her a 3rd toothbrush--can't find the others.
Her atrophy is mostly on her left side but elsewhere also.
I went out on disability in 2004 for other problems but I would have had to quit work anyway to take care of my wife. She is totally dependant on me and cannot make any decisions on her own; even her personal hygien such as bathing and brushing her teeth.
I haven't tried the occupational and speech therapies yet because I really think they will not help her.
I really hope that your husbands fair better. I know that it is very hard on you both and your loved ones. The frustrations with this disease can wear you down. Try and laughter in your lives for we found that this little gift can help.
Take care.

Annie,

As a spouse of an Alzheimer patient, I can relate to your tears and frustration. I believe I have some worthwhile information for you and all of the spouses out there.

Everywhere I looked, there was information for the caregiver of a parent or grandparent. Nowhere could I find help and information related to the unique issues faced by the Alzheimer spouse. This disease forever changes the marital relationship, and it is a pain that no one but the Alzheimer spouse can understand.

With that in mind, I designed a new website devoted solely and exclusively to the issues - marriage, intimacy, relationship repair - faced and understood only by the Alzheimer spouse. It is being launched on July 15, 2007, and the address is Thealzheimerspouse.com. Please visit me there, beginning on July 15th, for understanding, help, venting, and information. In the meantime, you can e-mail me at joang48@aol.com.

quote:

Originally posted by Annie44:
Oh, Lee I still loose it sometimes like when he lost his ID on the ship before we were leaving to go to shore. I cried. Then I found that it was my fault - I had taken it. Once I got it through my mind that he really can't help it I became much more patient. Hope you have a great day.