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I am finding your stories compelling, full of insight, experience, pain and compassion, and I am pleased to hear how much you appreciate reading the stories of one another.
In a previous posting, I mentioned that there are many forms of dementia, and although Alzheimer's disease accounts for 60 percent to 70 percent of cases of dementia, other disorders that cause dementia include: vascular dementia, Parkinson's disease, dementia with Lewy bodies and frontotemporal dementia.
In the early stages of these diseases, there can be some clear distinctions between each of them. However, late in the disease all dementias appear more alike than different. I bring this up again, because some of you may have seen news stories recently of U.S. Sen. Pete Domenici of New Mexico announcing his retirement because he has been diagnosed with frontotemporal dementia (FTD).
Sad proof yet again, that dementia knows no bounds of status, ethnicity, or gender. There are so many ironies in this disease. In this case the irony is that Sen. Domenici worked so hard for many years for mental health parity, in other words, equal attention and treatment of mental and physical disorders. Now he appears afflicted with a form of dementia that will initially affect his personality, reasoning, and maybe his language but eventually all areas of mental functioning. As with all of you, our thoughts and sympathies go out to the Domenici family.
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I am looking for a disease that is often misdiagnosed asParkinsons disease. There was a doctor at Mayo in Arizona that worked with these patients. He was Philipino, I believe. My friend told me that she thought he moved to a practice around or in Minneapolis. Shunt in head was placed. Vast improvement! Can you help me? Thank you, Norma
My wife developed frontal lobe dementia serveral years after she had a car accident when she had a double concusion. Three years before that she had a mild stroke which she had fully recovered from. During the years upto where she was diagnosed with demenetia she had numerous car accidents and uncontrollable spending. Her major mood is constant talking, repeating words, mostly in a happy mood where she contantly vocally describes what she is doing. She is unable to complete complicated tasks. But her memory is fine, both short term and long term (better than mine). Her other mood is where she appears to be mad at everything, she doesn't say anything and may glare or look away from people. The doctor first diagnosted her as bi-polar (which I think is more descriptive of her behavior, since her memory is mostly unafected). The really odd thing is that when she reclines in bed or a chair, she becomes "normal". But the instant she gets up she reverts to the happy jabber mood.
My husband has been diagnosed recently with FTD. He had been losing his short term memory for at least the last five years. But last May we went on a trip to Europe. Thats when i realized that things were not right with him. he was totally confused about where we were. he didnt know where we were and was not too interested in going places. he wanted to go back to the room and sleep. he was tired most of the time.We did manage to go to the places planned and I didnt let him out of sight.
He is still able to take care of himself and drive to close by places. He was a University Professor of Psychology and is the author of four books. His excuse if not able to do something is that he is still tired from having worked on his last book and if he doesnt remember the news he just heard is because he is thinking about how to market his book etc.
He has Primary progressive Aphasia. He is not able to communicate well. He is able to communicate better in his mother tongue but he has great difficulty speaking in English.
He has not shown any inapprpriate behaviours. He is loving and still enjoys the funny shows on TV.
I hope that he does not change his behavior at all.
Keeping my fingers crossed.
My husband presented me with papers yesterday that he pulled off online regarding a no fault divorce. He has not been fully diagnosed, but after 31 years of marriage the last 7 have been hell for me. He started having serious memory loss at the age of 54, then became verbally abusive and kept telling me he wanted to die. I did everything I could to get him help. He started playing golf daily, and did not work. He started writing suicide letters, or would leave the house saying he was going to drive off the mountain. He called everyone who didn't agree with him an idiot, began ranting and raving about every thing imaginable. I was embarrassed when out with friends. He kept getting speeding tickets. One minute he was laughing hysterically watching TV, and the next minute was sullen and moody. We had to go bankrupt from his outlandish spending on kooky ideas and blamed me for not being supportive of his every whim. Now he is thinking I am the cause of his problems, when clearly something is very wrong. I had him hospitalized two years ago when he had written a suicide letter and later was found passed out in the bathroom. I dont know what to do, as he wont go to a doctor and blames me for betraying him when I tried to get him forced into treatment. He has hated me everyday since then and is very mean. I don't know what to do.
It is heartening to read I am not alone.
Night terrors/hallucinations are very scary. Neurologist MD seems
to.... well.. I feel a lot more in charge than she does. Perhaps telling the patient he is just fine is o.k. and then not seeing him for months is
also o.k., but I DON'T THINK SO! Parkinsons dementia, LewyBody and
any other dementia wind up in the same unfortunate seeming game
of chance. Notice that the posts are largely by women. Bless ALL OF US
My husband passed away in Dec. 2011 following a diagnosis of FTD/Pick Disease. I found it strange however, that after his death i got copies of his medical records and there was no mention of Pick's Disease. We were told he had Alz for a long time but I knew this was different. He had no family history of FTD or Alz but had two head injuries in his 20's. His downward spiral happened quickly and no doctors in the hospital seemed to know how to treat him. One doctor consulted with Dr. Bruce Miller at UCSF (University of CA, San Francisco) who has a research center and does much research on FTD and Pick's disease. As a result of that consult my husband was taken off Aricept and Namenda which were likely making his symptoms worse and put on new meds for anxiety. Because mistakes were made in evaluating his symptoms and the wrong information given to the area nursing homes they were unwilling to accept him. We were also denied Hospice by the hospitalist on duty. He said my husband would be up walking and talking soon. My husband passed away 3 days after leaving this hospital. Another doctor signed for hospice the day we left the hospital. Hospice took wonderful care of him and of all our family as did the assisted living facility that gladly accepted him. It was clear that no one knew what to do and it was referred to by one doctor as "the kind of dementia that on one wants to talk about." So it's time that they all start talking about it.
My husband was diagnosed with vascular dementia on May 9th. The day after our 40th wedding anniversary.I have noticed bits and pieces of him disappearing for years. A number of years ago he was hospitalized with a "mental illness" episode. They said it was PTS, but he would not take meds for his aggression. I live with two different people in the same body. I suffer embarrassment and shame when his behavior is inappropriate with young women. He is getting physically aggressive with me. His driving is a great cause for concern. He goes 15mph, 60mph all in the same mile. He drives out the entrances of parking lots with traffic opposing him. He is hostile and very easily aggitated. He hardly ever bathes or grooms himself. He exhibits great resentment if I recount his symptoms to his doctor. My husband had a major heart attack two years ago, he has had a stroke and many, many TIA's, in addition he has several aneurysms. One is stented the rest are being observed. I have become his enemy in his mind. He gets aggitated with our grandchildren's activity levels. This is very difficult for me as I love children. I had to leave my full time job teaching preschool when he got sick. He is often rude to people in social situations. I feel like I am "on guard" all the time. He has COPD and emphysema and Sleep Apnea. He barely uses the CPap machine. He sits for hours in a state of lethargy. I have to yell to get him to get up and move. It is as if I no longer have a husb
My mom , age 68, was initially diagnosed with Alzheimer's about 4 years ago, but was found to in fact have FTD less than 2 years ago. Much of her short term memory is going and her mood swings have become violent. Dad, her caregiver, recently made a decision to have her enter a full- time care facility and is in the process of doing that now. I support his decision since his own health is at risk now. I've been reading other stories in here of what each of you are struggling with, including care struggles, money issues, and depression. My thoughts and prayers go out to each of you (as well as to the Domenici family). Keep your chins up and know that you are never alone.
January 22, 2012 6:23pm
My husband suffered a TBI injury in 2007. He never recovered and I have taken on the role of a caregiver, I am fortunate and am still able to work. Initially his mood and behavior wasn't affected, as time went on he became verbally abusive, and has no tolerance at all with children. He is unable to tolerate social situations and I am a nervous reck to take him out in public because he will shout obsenities to people he may or may not recognize. Family does not visit, I am becoming fatigued and have found that his physican lacks concern. Medications were prescribed and made it worse. I have found mental stimulation is more benificial. However there are no local resources directed to TBI. Initially his short term was effected, however, now he is loosing long term memory. We seem to have one good day and then a bad day. I am thankful for the good days, but honestly, I pray alot and like everyone else, take one day at a time.
Hi- My heart goes out to you! I just had an episode with my mom last night - we've taken my parents in- she got up and wondered who the man was in her bed and she wasn't going to sleep with him. She said she questioned who he was when he went in the room, and he laughted at her. That's what set her off.
She was on the way to the door, calling my name while I was coming down my stairs from the upper level- she said she might have gone out the door. She has dementia.
We sat and talked, she called my sisters.
I took out family pictures to "bring her back, and after about 1.5 hours, we were talking about how sometimes men have "issues"
and how they are often times "Insecure" with themselves so that's why they need to laugh at what we say - when they don't understand us,or are insensitive without realizing it.
It helped her.My situation last night is totally different from yours, but I'm wondering if you show him pictures - would it bring back any good memories of family or the 2 of you- or even of just himself- leave yourself out of the picture at first, especially if he's not even realizing you are his wife (and a wonderful one I'm sure he'd say if he knew what he was doing!)If he can get onto another track in his brain, you could be alleviated for a time? I guess it's
worth a try-just remember how special you are, get respite from people to come in and help, and to give you breaks- you really need to take good care of yourself right now!!
I'll keep yo
My husband is in the early stages of alheizmers. He is a heart failure patient, is a type 2 diabetic and has blockages in the back of his head and in his left leg below the knee. I can't trust him to drive or to be alone in the house. He gets angry easy and has been shop lifting whenever we go anywhere. I can't turn my back for a second. it is very hard and frustrating as I see my wonderful husband deterioting and it is breaking my heart. I have been a caregiver before for my Mother, who has sinced passed away,but this is much worse. I struggle everyday to keep control of my feelings and to still have some time for myself. I don't know what I am going to do.
He does call me names and threatens to leave me on occasions. He says I am a b----. On well. anybody have a suggestion.
There are a lot of other things he is supposed to be doing but refuses to do.
I would appreciate more information on symptons of frontotemporal dememtia. My husband had several small strokes within the last 15 years and one caused him to loose the use of his right side, speech and mobility for several months. He lacks emotion and doesn't always think of safety when working with electrical tools.. I've learned how to speak without harsh words but sometimes his anger surfaces to the point that I can't reason with him....anyone out there with the same situation...thanks
I lost both parents to different forms of dementia -- mother's was diagnosed as FTD, daddy's never actually diagnosed, but it was dementia. They were living in a big city, in their own home, my father was driving (he had a routine so he could find his way home), carried a lot of cash with him. My husband and I finally had to move them to where we lived, about 60 miles away, and put them in assisted living. Daddy could no longer take care of my mother and she was never getting out of bed, very poor hygiene, not eating right and had Type 2 diabetes that was getting out of hand. It was when we moved them that we discovered daddy was actually worse than my mother. She was very passive. He became extremely aggressive, cursing, paranoid -- the classic symptoms. He wouldn't listen to me at all, but he would do what my husband asked him to do. My father was a brilliant man, college educated, career military officer. His behavior was completely out of character. As I was preparing to move them to a memory care facility, my father got sick and died. Three weeks later my mother died. I felt as though my life had been taken over. It was two years of living hell, but I miss them very much. They died in early 2007, so it's been four years. I think I know what I will face when I get older and my husband and I have already warned our sons (husband's mother died of Alzheimer's). As a family member, you're never prepared for what you will face.
51 yr old male with Early onset Dimentia. I have tried to turn everything into a habit so nothing involves short-term memory. Drive a new car so I can remember everything in it before I lose it all. Live in a simple apartment, again to form habits or daily rituals. But I can't focus on anything, or remember why I'm opening a cupboard, etc. How quickly will this progress? This has affected everyone in my father's family, and he died of Pneumonia resulting from Dimentia. Anyone else?
My husband is currently in hospital with problems relating to FTD. He is 64 and had been displaying odd behaviour for over 20 years. He was just too laid back. couldn't focus on things and in general just gave the impression that we had the problem not him. He was diagnosed incorrectly with Alzheimers in 2006 and has now had a relapse resulting in a huge downward spiral. I've cried for the last two weeks and now feel numb. I've lost the love of my life and now that he's in care I will have to find a job at age 61. I lose my pension in about 5 weeks so the job I had to give up to care for him would have been my last job as I thought I'd be there till retirement age. This illness has destroyed the love and affection he had for me and when he sees me now all he does is swear and scream at me. I don't think anyone who hasn't gone through his could ever understand that kind of heartbreak. I still don't know when this nightmare will end. God help me please!
My father was a heavy binge drinker for many years. That increased. At72 he started having mini-strokes.He moved 2000 miles from any family.He had poor judgment and told neighbors and such about financial matters and his savings, etc. He was also sexually inappropriate with all ages and sexes. By 74 he developed negative gram spinal menengitis while living alone and was found unconscious after two days on the floor "cooking" in an electric blanket.
He was in a critical condition and completely paralyzed for weeks except for ocassional cursing at the top of his voice! He was not expected to live. He did ! And for FOUR more years - but in a nursing facility.
After 18 mos he was finally able to walk (rather unbalanced),talk, continued to drink and smoke when he could do it, and paranoid to the point he believed even the nurses were "out to get him". We found an open 7" jackknfe hidden in the closet. Also found over $250 hidden altho he claimed he was always broke. Whe confronted he was physically violent towards family members, nurses and even his doctor. He was diagnosed by three differeent physicians as DEMENTED, but we could never decide if Alzheimers was part of it...or mostly alchohol damage and strokes. I will forever regret NOT insisting on an autopsy after he died to determine what his brain disease was. He had an enormous will to live or would have never survived that long.
there isn't much out there about FTD. My husband my first diagnosed as having alzheimers (4 months after my mother died who had Alzheimers). however I was not convinced it was alzheimers due to how my husband was progressing. It robs me of my husband piece by piece, is there not more information out there to share.
I know the frustration of living/caring for my husband who had Picks Disease. There is so much information out there about Alzheimers but very little about the other Dementias.We're told the end result is the same but in the early stages, in younger people, we need more information, more guidelines for care. Families are destroyed by these diseases because, only if you are in every day contact with these patients do you observe the subtle changes. Outsiders do begin to think there's something "wrong" with you. My husband passed away after 10 years and finally the family believed me when I said "something is wrong".
My husband, age 59, was deteriorating for about five years. Looking back I wish I had realized what was going on. He suffered a severe head injury years ago and there is also a family history of dementia. At the beginning the signs and symptoms were so subtle I thought perhaps it was a bit of a mid-life crisis. Then there were problems with remembering appointments, etc., but he is very intelligent and was able to cover up many of his lapses. He left me suddenly, just as your husband did, without any warning, telling me I was abusive. Now it has become a marital issue and there is nothing I can do to help him. This past year has been a nightmare and he is still undiagnosed. He has broken our family, hurt his children and has destroyed our finances. He is now constantly forgetting and cannot manage his money, but tells the children he is destitute because of me. Doctors need to be more aware and listen to spouses. It would have helped if we had the same doctor. My heart goes out to you Rosa. There seems to be nothing we can do at this point. I will keep you in my prayers. Has anyone else had a similar experience or have any suggestions?
My mother has FTD and was properly diagnosed in July 2009. FTD is rare and has its own sets of challenges. When I look back over the past 5-6 years there were signs of the dementia, even though Mom did not live with me. Mom' FTD started around the age of 63-64. That's probably the worst part of this disease is the young ages. I started a new blog just today for hope, laughter, courage, and gratitude. For all those who wish to follow: dementiacaregiversunite.blogspot.com. I will be adding postings at least every other day. Please share this blog. My hope is that it gets us all through another day, week, month, etc.. with gratitude and courage! Remember, we are not alone!
Is there any treatment for FTD? Husband may be so affected.Inverted nasal polyps-whole life. Multiple minor and major surgeries-about 60 years- Major removal of built up necrotic material in left frontal sinus about 5 years ago found that material penetrated soft bone tissue and abutted left frontal lobe. Can this have caused thisdementia? Personal Hygiene horrific-complains that something is wrong with his head; says it feels crazy. He's otherwise a healthy 93 year old with benign prostate enlargement. Thank you for any and all help you may be able to give me.
Hi , my mom probably started with memory problems /social problems 20 years ago . She is now 91. In looking back , I remember that she became very unorganized in keeping on top of her bills, became very self conscious about going out with friends saying she wasn't dressed "right" when in fact, I believe she felt she could not communicate intelligently any more. Communicating and socializing had never been problems
before. She became more and more reclusive, except for family and 1 or 2 friends. About that time she was diagnosed with dementia , possible Alzheimers . My sister moved back into to town to take care of mom more and after mom fell down the steps, mom moved into apt next to her ( about 8 years ago) . Mom has become more and more dependent on amy (my sister) over the years. In the last 3 years , mom has become more and more innappropriate in remarks, making sexual comments about family and strangers when around them. She is extremely repetitive in her speech and very childish. About a year ago , she was diagnosed with frontotemporal dementia. She was put on seroquel to help control such behavior. My sister is needing more and more breaks from mom as she has been living in same house as amy for about 4 years.It is very improtant that the primary caregiver gets help and "mini-vacations" . Just taking mom for 1 day - 5 days give amy the refreshment she needs
My husband has FTD .. he was first diagnosed with Alzheimers. However, in the 3 years since diagnosis it's mainly his speech and inability to communicate that is most impacted. It's so painful to lose someone you love piece, by piece
Hi! I need help! My mom is 64 and acting crazy!
It started 10yrs ago. She would repeat herself (ex: daily calling and telling my brothers and her friends to tell them that I was pregnant; when in fact, they knew, and I was in my third trimester..it was old news) She started demonstrating socially innapropriate behaviors, eating uncontrollably. She has no empathy for others, for example, she was at my cousin's funeral. She walked up to my crying aunt and said with a large smile," look at my tan, I was in Jamaca. It was wonderful.
She will walk up to strangers and tell personal information. She has word finding difficulty. Her comprehension is dimished. Her judgement is off. We can not leave her alone with our children. The woman who would not let me watch "Jaws", has been found viewing rated "R" movies with her young grandchildren.
She calls me and my siblings 5-6 times a day. When I answer the phone I typically get the same "HI Kel" as if we havent spoken for a while even though we may have just spoken an hour ago. We then will go through the same list of questions that I already answered that day.
She seems "out of it" then back on.
She underwent and MRI and the the results were normal. She also participated in a dementia screening at the Doctors office and passed.
I am happy about the results, but what can I do, she has no awareness that she is acting crazy,and is mad at me for asking her to be tsted. She is as
I see an increasing number of FTD and Lewy Bodies but the Drs don't seem to understand as much about them as with alzheimers. I continue to try to educate and refer families to web sites so they can make their own informed decisions
I've read all of the posts and find them very interesting. There seems to be a common thread in my husband's condition. He was diagnosed with FTD about eight years ago, but about three years ago he had a PET scan and was found to have had a stroke in his right temporal lobe. His disease is not expected to deteriorate as fast as FTD, which was good news. His language skills are good, but he has no self motivation. He lies around and watches TV when he is awake and sleeps about twenty hours per day. He has drunk excessive amounts of diet sodas for about thirty years, and continues to do so. He loves sweets and snacks constantly, even though he is diabetic. He is an impulsive buyer as well, and he loves to watch videos of big breasted women on the Internet, for which I'm constantly blocking. He is 68 years old now, and I hope that he doesn't do what Rosa's husband did. I think that he is too dependent on me to leave me. It's not easy, but going to support group meetings and being educated and informed about dementia really helps me keep my sanity.
My 58yr old mom was diagnosed with FTD in 2009 after going to specialist of neurology we finally found our saving grace. I fought with a lot of the doctors bc they said that she had Alz. I knew that she didn't, her memory was fine, what wasn't fine was the way she was acting. We have been through a lot in 2yrs. Mom stopped doing everything, including bathing. She went from speaking and studdering, to speaking minimal words to now, not speaking at all. Dr told us that she is progressing really fast and to watch her. She hasn't been aggresive (that much) she hates sitting on the toilet or getting into a car. She will fight back but just with weight. But she is so loving, she loves to just sit and "cuddle". We tried giving her puzzles, coloring books, we even tried the Wii games none of those peeked her attention for more than a min. so, taking walks, watching shows, taking her to movies is pretty much what she loves to do. But we recently wnt back to the dr said that since her appetite has decreased and she is starting to put none eatible items in her mouth to watch closely because she will eventually need to be placed on a feeding tube and it was our chose to let nature take its course or not. Let me tell you that was so hard to hear for my mom. She is my angel and just know that there are people out there for you if you need them, and don't feel alone, because your not!!!! xoxo
My gentleman friend was just diagnosed with Frontotemportal Dementia (Picks's Decease). He has been having trouble with his memory for years and we all thought it was normal old age setting in. Over the past few years he has shown inappropriate social behavior, difficulty learning new things, trouble with his "reasoning" and lately, a lack of any interest in the things that used to bring him joy. I think he has been slipping for at least 5 years. The difficult problem is not knowing how long before he looses his language skills all together or his ability to interact with family and friends. Two years or twenty?
As a former New Mexican who continues to work in mental health, I want to express my gratitude for Senator Dominici's long list of accomplishments and wish his family strength and compassion through his course of this difficult illness.
My husband was diagnosed earlier in Feb. of 2008 with FTD at the age of 45. Prior to this he showed signs of forgetfullness 2 years prior. It seems since his diagnosis FTD has progressed rather quickly. Things he did over a 1 yr ago are extremely difficult. He cannot be left alone unattended. He was also on Aricept but he become extremely hard and somewhat hostile. He is a very gently person. He is now on Namenda and it seems it helps with being somewhat alert. His language suffers quite a bit and can't get the words out, and studders and gets overwhelmed easy. He likes to socialize but invades your space even with strangers which makes it difficult to be out in public with. He does it since his social skills have pretty much dimished. No one in his family has this, but has a maternal aunt that died of Alzheimers. He is pretty much a very animated person and is very pleasant, I am a grateful person for him to be this way. I was told probably since he didn't experience this hostile or angry personality as a child that he may not ever experience this. I truly hope so.
He doesn't mind very much, and prior to us moving to a different state, he stayed at home a lot after diagnosed he'd get bored and take many showers a day. Though now it's different and he has many accidents and doesn't use good hygeine. He likes to look nice and dress nice though. He doesn't care much for sweets as prior to FTD he loved them and I understand that most FTD patients do. Anna
To Renee: My husband age 61 has finally been diagnosed with FTD after an MRI, CT scan and EEG and cognitive testing. I've been fighting with him for 2 years to shower. He once went 28 days without one, he didn't think he we dirty. I now tell him the day before that he will shower tomorrow and I leave a sticky note as a reminder on the bathroom counter and at his breakfast setting so he sees it first thing in the morning. I lay out his clean clothes and underwear and he now showers every 4 to 5 days. I have to constantly remind him to brush his teeth and put on deodorant. If we are going out he does it more freely. I asked his psychiatrist just last week about Aricept and he said it works for Alzheimer's patients but it seems to make things worse for people with FTD so my husband is staying on Cipralex, 10 mg per day. It is an anti depressant and it has taken away all his hostility and aggression. It is also supposed to boost his mood but it may take some time to do that, which it may not.
My father has FTD. Getting him to take a bath or other form of hygeine is a fight. He is becoming more hostile to my mother. Has anyone else experienced the bathing issues and what have people tried with success? Has anyone noticed any improvement with Aricept for this condition?
My husband's two sisters were diagnosed with FTD. One at the age of 58 and the other at the age of 62. His mother died at the age of 66 of ALS. He also has a cousin on his mothers side with Parkinson's. I am concerned for my husbands health. He is 55 and I am wondering if there is any way to get early diagnosis or preventive medicine for those who may have a genetic predisposition to having this disease. What should be be doing now to prevent him from getting this condition.
My brother is 40 years old and was diagnosed in July 08 with FTD. He is now in an assisted living facility and has adjusted quite well. I have found a wealth of information and support at the FTD support form at www.ftdsupportforum.com
There are both FTD sufferers and caregivers who share information and support each other on everything from meds to venting about their trials. Sue L
My 80 yr old hunband was diagnosed two years ago, and is in the moderate stage of alzheimers i think...but I haven't read any blog yet on his problem of not wanting to stay home at all. His ability to drive seemingly seems ok to me, but this has me puzzled. Should I start going everywhere with him and appease him? I can't call it roaming per se, but he wants to be in the vehicle going somewhere. Could someone please give me information on this? Thanks
has anyone experienced their loved ones inablilty to distinguish hot from cold. do they lack the judgement to dertimine if something is hot/cold or do they lack the sensation? thanks
My husband has frototemporal dementia,he is in the moderate stage.His dr. said place him on a waiting list for a nursing home,because it takes 2 years or more.He said this involves more behaivor problems,than alzheimers.Is this good advice?
I have never posted a blog before but am finding myself utilizing the computer more and more lately in an effort to I guess save my mother and my family. My mom is 58 years old and was recently diagonosed with FTD. No family hx no markers that I have been reading about. She is the second to the youngest out of 13 both parents living into late 80's no grandparent hx. Lots of alcoholism, live on a dairy farm all of her life. Hind site such a blessing. I began noticing my mom's forgetfullness 1 week after a total hysterectomy. I was just wondering if anyone else has noticed this occuring or if there is any established link or research into the abrupt withdrawal of estrogen and dementia. My family is falling apart. due to moms age she is not eligible for a lot of services. I am scared every time that I forget something or misplace something that I am developing symptoms. She has been on Aricept and Namenda still the disease is progressing rapidly. This is hell on earth.
My mother at age 63 may potentially have FTD. She exhibits the symptoms; confusion, speech problems - mixing up words & thoughts, agression (which is not a normal characteristic of hers), sometimes thinks that my sister & I are friends and not her daughters, mixes up our names & does not always recognize her grandchildren when referring to them by name. She is not able to write a check, pay her bills, and often will make very strange combinations of foods if left to make her own meal. I get nervous because sometimes she will be talking to me, but staring at something else & actually not blinking, not recognizing that I am right next to her. She sees people in her house all of the time. We try very hard to mitigate any of the 'triggers' that may cause a frantic episode of mistrusting me & my sister and running around looking for things/papers/documents that she misplaced & that really have no relevance to anything important, but I am tired of the mood swings and I just want my mom back.
She is uncooperative with Dr. visits and closterphobic, so we only have one CT from a yr ago that I have heard Drs. continually say 'unexplained white matter' in the brain - that combined with the behavior is what leads the Geriatric Psych to think it is FTD. I am wondering who else out there is a good source of information & help with this type of problem. I feel that we get a run around and no one really knows much about her condition and can help her appropr
Please tell me what types of symptoms occurred in FTD. My sister in law talks in repetitive words, whatever she is concerned about at the time. She is also an obsessive eater and drinker, especially coke, tea, and sweet foods. She remembers what is said to her, but will still repeat and ask again. She has no emotions about anything except eating. She has been about the same mentally for 1 1/2 years, does not seem to improve with medications. Got worse with risperdal, seroquel, haldol, and cogentin. She can still do math figures, even in her head. Knows how to right a check, and is deceptive and sneaky when she wants to do something. Does this sound like FTD to anyone?
My husband has dementia - also a severe aortic stenosis. He has a bi ventricular pacemaker and defribillator. Would aortic valve surgery affect his dementia? Should he undergo the operation? Would it help his dementia? He is 72. Ellen
Earlier this year I was diagnosed with FTD. I am 30 years old and had a right temporal lobectomy 11 years ago. I was just wondering if this is normal for this to occur this many years later?
My husband, age 61, was diagnosed with bi-polar in 2002 and has progressively gotten worse. I never could see the ups and downs of bi-polar but he has had extreme difficulties figuring out how to do things and was very disorganized. He has lost a number of jobs due to this. This summer he got very argumentative when he was reminded how to do things correctly. It was like he couldn't figure out how to put things together which he had done all his life. He refused meds or to go back to the doctor for further screening and now, after 40 years of marriage, suddenly left home one night and moved in with a woman acquaintance. He is a caffeine-aholic, too. Now they are telling me at his psychiatrist's office that he probably has FTD. Anyway, I wanted to advise anyone who has a spouse that is exhibiting these symptoms to be aware that your marriage may suddenly be on the rocks when his/her personality changes. We should have pursued help for him more aggressively earlier on but one just doesn't realize why all the ridiculous behavior and the ill person thinks they are fine. I didn't even hear the words FTD until too late. If anyone has any advice for my situation (he has been there for a month now) please respond. Thanks.
My 73 year old husband was diagnosed with FTD 2 years ago.When I learned more about it (AFTD is a great resource for education!)I realized that some of the odd behaviors I had observed for the previous 2 years or so were early symptoms, an "aha moment" for sure. His symptoms are thankfully not socially unacceptable at least so far but his include stiffness and instability walking (he says his feet don't do what he tells them)and he tires of walking after about 3 short blocks. He has a great deal of trouble with language; for instance, he was an ace crossword doer and now has quite a lot of trouble with the easier ones. This is sometime caused by his misspelling an earlier word...interestingly that word may be similar to the correct one. He cannot do what is known as Executive Thinking any longer. Were we to discuss more than one related topic, he mixes them up and just can't get it straight. His long term memory has big holes and short term is pretty non-existent. It appears that he Can learn if we work at it. For instance, I put my cell phone number on speed dial and so far he can remember that. He is still driving and I go with him at least once every week or so to be sure he's still safe. I know losing his license will be a huge blow. His personality has changed quite a lot. He's still very nice most of the time but the relationship we had for 30+ years is more like acquaintenances most of the time now. I miss spontaneous signs of affection!
usgh!!!!!! AS YOU CAN SEE..i mean FTD,,,i NEED HELP, i DON'T KNOW WHAT I HAVE , IT SCARES ME, I NEED TO GET A HANDLE ON THIS THING! PLEASE HLPE ME
I am sorry, as you can see I am very inexperenceed about all of this, I was diagnoased with FDT, just wanted to make the correction...........
I just stumbled accross your web sight, I was just recently diagnoised with fld, although have sufferever for at least six years prior....I know abousolutly nothing about this, please someone tell me what to expect so that I may prepare, please,thank you, Deborah K Hard
It's been two years since my father passed away. His journey through dementia lasted approximately eight years, and we were fairly certain that he had Alzheimer's disease (much like his brother, father and grandmother before him).
My brother, sister and I decided to have an autopsy performed following my father's death to confirm his dementia. We know that our fate is probably set, but for our children and grandchildren, we wanted to know for sure.
The autopsy did confirm that my father died of "pneumonia as a complication of Alzheimer's disease." However, because of the guidance of my father's pathologist (and long-time friend), we went the next step to have his brain harvested and sent to the Harvard Brain Bank for research.
For this, we will be forever thankful. After several months, we received the final report that confirmed by father actually had Frontotemporal dementia.
This diagnosis explained so much about my father's behavior and symptoms throughout his illness. Clearly, he had exhibited signs of dementia, but his behavior didn't always fit the classic AD description. Now we know why.
I encourage everyone to consider donating their brain - make arrangements now, and let your family know.
My father is 86. His behavior became bizarre. He was diagnosed with FTD through mental evaluations and brain scans. We have letters from two doctors putting our POA into effect. We believe that he has had FTD for a long time. My mother kept saying that he was making stupid business decisions, etc. He was still working (self-employed) and $200,000 in debt when diagnosed. He had a base IQ of 150, which is problematic. He is so good at conning people. He gets them to help him in his schemes to go behind our back. We have to constantly stay one step ahead of him. The attorney says that we have enough information to take him to court and get guardianship. But, we hate to do it, and keep trying to use our POA to handle things. He has enablers who tell him how to do things. He recently bought a prepaid cell phone under an assumed name. Are there any assisted living facilities that specialize in FTD. He still has his memory intact, and would go crazy in an Alzheimer's unit. My sister and I are exhausted!
My husband is 51 years old and his symptoms are "consistent with frontotemporal dementia". Our story is much like all who are suffering with this devasting illness. There were years of running to specialists, testing and begging for advice, referrals and a diagnosis. Now we pray for a miracle.
Please visit the AFTD website. The information and resources are invaluable.
I am wondering if anyone is utilizing something like Valium for high "manic" periods? The meds we use daily are Clozapin 4X/day & Buspar 3X/day; also Namenda & Exelon from pre-FTD diagnosis days. However, pacing is the activity of high "manic" times. He paces every afternoon and sometimes the pacing goes on for 3-6 hours. During good weather, I have incorporated a long walk into our routine during the pacing times - this helps but does not stop the activity once we arrive home. The pacing also includes an inability to sit or rest during these times. While he tries to stay seated, even during meals, it looks like "jack in the box". Eventually the evening Clozapine (200mgm) kicks in & he falls alseep, exhusted.
My husband was diagnosed with FTD 5 years ago, his behavior was so impulsive and his personality completely change and he started acting out. The physician put him on Risperdone. The medication has helped, buthe is certainly not the person he used to be.
I am wondering if FTD could cause a person to sexually abuse a child. Has anyone had an experience like this?
My husband, 66, is now in a nursing home, undiagnosed but seems to fit FTD/MND. He also drank CocaCola all day long. Interesting. And suffered chronic back pain all his life and severe leg pain that last few years, progressing through the hierarchy of pain meds. Fell into a coma one night and came out of that but never recovered enough to live at home again. The disease is now progressing rapidly; aphasia, unable to swallow, profound muscle weakness.
My husband was been diagnosed with FTD three years ago. He is now 58 years old. I have been caring for him full-time for the last 2 1/2 years and I feel lucky that I am able to. He was the funniest, most charming and caring man you'd ever meet. Now that his body holds one of the most horrific diseases we could have ever imagined, I have made arrangements for his brain to be donated for research at the VA/University of Wisconsin brain bank and they will preform an autopsy for us. We all are dealing with the terrible cognitive losses, the uncharacteristic behaviors and the grief of watching our loved one steadily decline. I feel the brain donation is the greatest gift, but it's a way to fight back, too.
My father has just been dignanosed with ftd. They tell us that in six months if he has any of the front part of his brain it will be a miracle. Will he be able to survive with only the back part of his brain. We have gone through some stages of not knowing immeiated family and aggressive behavior. He has sever pain in his legs. He has short term headaches. The doctors tells us that they will only try to keep him comfortable. He was also diagnosis with spinal stonsis back years ago. We feel now that he may be in final stages.
To Dolores: sorry I did not get back to you sooner, my husband is on Aricept 10M,
Risperidone .5mg twice a day, citalopram 20mg and at night trazodone 100mg.
Referring to Kathleen's comment My husband has frontaltemporal lobe degeneration. What dementia type medications does your husband take to help him cope?
This is off-topic, but I have request for ocnversation: My mother was dianosed with dimentia years ago, at age 52. She's now 60 and in the late stages of what we believe is Early On-Set Alzheimer's. The doctors always had difficultly diagnosing her for some reason. I recently read a news article about sodium benzoate (in soda and many processed foods), that it has been linked to the development of Parkinson's and some cancers. I wonder, have studies been done on Alzheimer's and sodium benzoate? Or, have any of you had family members who developed dimentia or Alzheimer's and also drank a lot of soda. My family has been trying to pinpoint something that could have spurred the early on-set of the disease. Of course, we're not doctors or researchers, but we always wondered if the chemicals in soda could have contributed. She drank tons of Diet Pepsi but was otherwise pretty healthy. Of course, there's always the genetic connection... but I thought I'd bring it up.
My husband died recently after a 2 year bout with a Dementia Non-specific diagnosis. His symptoms were dystonia and akathesia like muscle spasms, impaired memory, difficulty swallowing, and some rigidity of his arms. His ability to reason seemed always relatively unimpaired, although he could not express himself well. He always knew those persons important to him. He died after aspirating food and developing lung congestion. He was only ill for 4 months prior to his death, although he had been diagnosed 2 years earlier. i'm still wondering if he was misdiagnosed, and suffered from an agitated depression, and developed dyskinesthias associated with anipsychotic drugs.
Several of the news reports about Sen. Domenici's frontotemporal dementia (FTD)diagnosis said for a year his leg/back were hurting him, so doctors thought it was spinal stenosis, but then his spinal specialist sent him to a neurologist who diagnosed FTD. I am wondering what in the world back and leg pain could have to do with FTD. Does that mean it never was spinal stenosis? I understand the two conditions can co-occur. Has anyone heard of FTD manifesting with chronic leg/back pain symptoms? I ask because my father, 73 yrs old, who likely has FTD, has had chronic back/leg pain for probably more than 15 years. It has been a huge problem in his life. He's had multiple surgeries and been on a succession of narcotic pain meds over the years. The meds probably masked or were blamed for early signs of FTD.
To Anon. My husband has frontal temporal lobe dementia also, his behaviour and energy patterns are very different - he is agressive, can't reason, acts like a five year old and has taken a big attraction to children (he never bothered much with his own when he had them - so this is very different). He has difficulty putting the correct words in a sentence although he knows in his head what he wants to say. He is in the moderate stage and he was diagnosed at age 68 officially but I noticed signs of funny behaviour about two years before that. A good geratric specialist and proper medication will make it easier for you to live with your mom as she becomes more aggressive and demanding. My husband is reasonably healthy and still goes to lawn bowls and plays curling but his behaviour is bizarre at times.
My mother had what was first called "Early Altzheimers" but it progressed differently. We were told it was a frontal lobe dementia. At her death, age 62, her brain was examined and the disease was determined as Picks disease. How does this relate to FTD?
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