I was diagnosed with this problem about 7 years ago, I am now 50. Decided to do a little research and found that there is no known treatment. I also have a lot of other health issues most of them have some treatment. I really did not think that there was no hope for me to recover from this, I was blown away. Not many people know what problems I face. As soon as they know you have something they sometimes take advantage of the situation. I still have some of my faculties, for how long I do not know. But the more people that think I am normal the better. Then there is ah!! I am sorry. I do not need the looks and stares, so very people know besides the doctors and clse friends.

Hi Robert and Welcome.

I also have that....and several other things. I was very scared when the doctor showed me the brain soect scans that showed all the areas that have damage. The original damage was in the fronttemperal and started with seizures and they think a mini stroke..i dont know, it is so confusing.

I think, one of the hardest things to deal with when you have dementia, is that you look fine, so, people don't understand why you dont make sense sometimes, why you dont work, why you cry easily, and then are laughing and or agitated another minute.

I had some time when I really didnt want to get out of bed at all, and was very depressed. I did not feel like I had any purpose at all in life. I could not go to work, I could not cook a meal anymore, I could hardly have a conversation with my husband or daughter, and at the same time, had the fear that I might wake up tomorrow and have left them totally. I thought...why???....just...just quit now....
I have a wonderful husband and daughter who would not give up on me, and a wonderful church family who prayed for me constantly. Anyway, I prayed a lot, also, my family doctor reminded me that I needed to start thinking of the things that i can do, insted of the things that I cannot do....and one day, i woke up and thought that it is a beautiful day!!!!

Now...to be perfectly honest.....During that time, I had gotten up to the full 10 mg of aricept for alzeihmers, so, i am sure that helped, but, I am doing better.

but, i guess, my prayer for you, is that you can start to focus on what you can do.....and also allow people to help you with what you cant do(suggstion from my doc), and enjoy each day!!!!!!!!!!!!I have placed bird feeders around my deck and started watching and listening to them. I also have planted plowers and take care of them. I just enjoy all of the simple things that I used to take for granted. Make sure to organize as much as you can before you lose any more functioning, and also, find someone that you can trust to help you.

I return to my neuro and hemotologist within the next month and may know a little more about things.....
but...i do understand how frustrating it is to think that your brain is just now working......

please take care and know that you are in my prayers

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Originally posted by T Hoops:

quote:

Originally posted by RLopez:
I was diagnosed with this problem about 7 years ago, I am now 50. Decided to do a little research and found that there is no known treatment. I also have a lot of other health issues most of them have some treatment. I really did not think that there was no hope for me to recover from this, I was blown away. Not many people know what problems I face. As soon as they know you have something they sometimes take advantage of the situation. I still have some of my faculties, for how long I do not know. But the more people that think I am normal the better. Then there is ah!! I am sorry. I do not need the looks and stares, so very people know besides the doctors and clse friends.

quote:

Originally posted by RLopez:
I was diagnosed with this problem about 7 years ago, I am now 50. Decided to do a little research and found that there is no known treatment. I also have a lot of other health issues most of them have some treatment. I really did not think that there was no hope for me to recover from this, I was blown away. Not many people know what problems I face. As soon as they know you have something they sometimes take advantage of the situation. I still have some of my faculties, for how long I do not know. But the more people that think I am normal the better. Then there is ah!! I am sorry. I do not need the looks and stares, so very people know besides the doctors and clse friends.

Hi RL and glad that you are here, you have come to a wonderful community that does understand and will not take advantage of your faculties. I want to share a story with you that I haven't shared with anyone else yet. No real reason for it but now I feel the need.

I was diagnosed in 2002 with EOAD after a long 2 year battle of finding the answers as to why I had become this other person so to speak. After getting our answer I picked up and became an advocate in speaking across the Midwest, writing a book, etc. My husband and I had also suspected FTD just by the symtpoms.etc. In Nov. I am speaking in Canada and that speech relates to partnering with your healthcare team. I had some questions and wrote my neurologist a letter and asked him to please be honest with me and tell me his thoughts/diagnosis.

Four days ago, I got a letter in the mail from him and this is what it said. "Without a pathologic confirmation we cannot be sure of what kind of pre-senile dementia that you have diagnositically. I felt that it was most likely one of the frontal temporal lobar degenerations (FTLD) of which FTD is one subtype among several others. These tend to progress a little more rapidly than Alzheimer's disease showing a significant deteoriation over the span of about 7 years BUT keep in mind all patients are alittle different and we speak only of statistics in general but we do not know how a specific individual will progress over time. Some patients have a much slower course with their dementia than others. We hope that this will be the case in your situation."

Well, my friend it seems you are one that is going to surpass the average 7 year statistic and though I am just now coming up on year 5, i hope to as well. Until then as you stated there is no cure for FTD or AD or many of the others. I would encourage you to enjoy the things that make you happy for as long as you can. True friends do not take advantage of our weaknesses but rather are there to support us and give us strength. Live in the moment my dear friend, none of us know what tomorrow holds.

My sister and I are taking care of my mom (age 61) who has been diagnosed with FTD. She had been displaying unusual behaviour for a few years and we all blew it off as her needing extra attention following my father's passing. She was in a car accident in January 07 and suffered brain damage. We had to make visits with her to her nuerologist which is when we found out she was being treated for FTD for 3 years prior to the accident.

It is extremely difficult to care for her due to she displays inappropriate behaviour and repeats the same sentences over and over for hours on end. She also spits on the floor and displays inappropriate se*ual behaviour. It seems she's tried every mediciation there is to help with the impulses and nothing seems to work.

It's gotten so bad we are going through the dreaded process of placing her in a assisted living facility. We both are exhausted but are very distraught about her leaving our care.

If anyone has any advice or medications that have worked for you or your family members please advise.

May God bless and strenghten every one of you going through this horrible disease and the caregivers that lovingly provide for you!

Hi,
My mom was diagnosed with FTD last year. Right now she lives alone and her two daughters live in other states, so we aren't there to help her on a daily basis. Thankfully, my mom's sister lives 10 minutes from my mom and checks in on her and helps her out. I have taken over paying her bills because she can no longer do it. The money she does manage on her own is managed very badly. She is convinced the bank is stealing from her although we have explained that the bank is only taking legitimate charges. She constantly orders items from any company that will send her stuff, then won't pay for it. Just the other day she insisted on buying a GPS for her vehicle, although she only drives within a very limited area. She also doesn't believe that she has to pay for the things she orders, that somehow they are free. When I asked her why she needed the GPS, her answer was that she wanted it.

Her behavior isn't too bad, yet. She won't take a shower, but bathes at the sink. She doesn't fix her hair or other stuff while at home, but does take care of it before she leaves the house, although sometimes she puts on way too much makeup. She shines pennies in jewelry cleaner before spending them. She buys food but doesn't cook it. She is way too trusting with strangers. She gets lost if she takes a different route to the store or home, and can't figure out how to get home. She has a dog that she overfeeds, who then poops and pees on the floor. We have explained to her that the dog is over fed and she doesn't let her out enough, but she insists the dog is just stubborn and she does let her out enough. (The dog is going to another relative's next month, to solve this problem). The doctor said she has no executive decision making skills left.

My question to you is this: You appear to be aware of your disease. My mom appears to be in total denial. She refuses to listen to us when we express concern about her unusual behavior. Even when presented with facts, (my sister and I insisted she see a doctor about her behavior because we suspected FTD and the doctor confirmed it) she still refuses to acknowledge or accept it. My mom has a copy of the doctor's report and has read it for herself. It clearly diagnoses her with FTD, but her response is that the doctor is wrong. How do you help someone who won't agree that they need help, and fights you at every turn? We have resorted to sneaking around behind her back and it makes us feel terrible.

Anyway, if you can provide any insight or help that we could use to help my mom, I would appreciate it. Thank you very much.

Welcome, glad you are here. As a person with FTD at 43 years old I can tell you that your Mom is in denial and the harder you push her the harder she will push away. As hard as it sounds you need to back off and be patient and understanding. She may make alot of mistakes and need some help that just means that you will have to be around alittle more to check on her to help her meet her needs. My husband sneaks around behind my back I am sure, he does what he has to to keep me safe but he also pushes me to stay active and do what I can for myself.

Even though this particular portion of the Forum categories is for those who actually have dementia, I felt impelled to write.

I am an RN whose mother has FrontoTemporal Dementia. The last four years have brought severe challenges that I could not begin to have prepare myself for.

It does sound as though your mother is suffering from rigid false beliefs - these beliefs are called, "delusions". While every person is different, and each has a different course of their disease, many people with FTD become delusion-driven.

Your mom should absolutely NOT be driving. She is far past the time to remove the keys.

With FTD, the person frequently exhibits very poor impulse control both with behaviors and with purchases, willful decisions, etc. There is an element of narcissism with absolutely no empathy for others; there is usually an extremely poor lack of judgment which worsens over time; and a real disinterest in or refusal to perform necessary hygiene such as showers, shampoos, brushing teeth, etc.; denial is often in play and all of this worsens over time.

Do go to Google and look for the Association for FrontoTemporal Dementia, (AFTD), they have a lot of information as you go through their site.

Do NOT argue or try to explain with your mother. Using logic doesn't work - she no longer is able to process, reason and think as you do. Her delusional thinking assures her she is absolutely right and her delusions are as real to her as the chair you are sitting on.

It came to a point that in order to accomplish anything to help my mother, I had to resort to "therapeutic fibs." Perfectly okay to do so, and it is also a kindness when things start getting quite difficult. It saves both her and you much mental anguish.

A good Neurologist is extremely important to this diagnosis. Something we discovered the hard way, was that Aricept, Namenda and like drugs are contraindicated in FTD. It frequently causes worse behaviors and increased agitation.

When the behaviors become quite difficult, the only meds that assist behaviors, (nothing treats FTD), are the antipsychotics. The most common used are Risperdal or Seroquel. These are given in low doses and can make a dramatic difference in the quality of life.

This is one of the dementias that is the most difficult to deal with because they stay alert, oriented, able to understand their day to day business and retain much of their memory until the end - those facts coupled with poor impulse control and dreadful judgment leads to frequent and profound challenges.

You have already seen this with your mother's spending. Please be sure to get your DPOA's for Healthcare and another for Finance. Get on all her bank accounts and watch them online like a hawk.

Also, run her name through the three Credit Bureaus, I found SIXTEEN open credit accounts for my mother - different ones at different credit bureaus. In order to close them efficiently, I had to call and pretend to be my mother (need SS#, DOB and her mother's maiden name.) If I did not do this, EACH credit account wanted me to mail them a full copy of my DPOA for Finance and it would take about a month. Nonsense. So, I became my Mom for an afternoon.

My mother began to plunder the bank accounts and tried to take all the money out to "throw it away." Fortunately I caught this and because I was a Joint Owner I was able to transfer the assets to another account in my and my step-brother's names only and make her right of survivorship - it was the ONLY way to retain assets for her care.

I opened a smaller checking account for her with about $600 in it. She could write checks but couldn't do much damage. I kept the bill paying checking account and had to keep her name on it as she had auto deposit of her Social Security check. I kept the balance at only a few hundred and transferred money in when I paid the bills.

PLEASE do NOT let her drive. If there is an accident and anyone is seriously injured or killed, she will be in dire straits up to and including being arrested. More than likely she will be sued - medical records are subpoenaed and when they see she has FTD - game over! Also, since family is aware of her disability and did nothing to stop the driving, family may also find their name on the suit. So, time to take steps.

Mother did not have a "straight line" with her FTD - she was like a dimmer switch. She would go weeks with better behavior only to slide downward with extreme dreadful behaviors - she'd change abruptly without warning. Up and down, back and forth.

As a few years went by, the behaviors became worse and worse and it became untenable. She shopped catalogs, opened accounts, tried to buy $10,000 golf cart, bought $3000 drapes, she thought all food newly bought was all rotten and threw it all away, she gave away her clothing and then said I stole it, she was paranoid and I was usually the object of her anger and the one blamed for everything. She refused bathing and shampoos.

She stayed this way through what would be a Stage 6 for AD. As she advanced her behavior did too. She would shout, pound on the furniture, verbally and emotionally abuse, absolutely horrid. Wouldn't see a doctor so it was a long time and several therapeutic fibs until I could get her to an MD - Neuro - and get Risperdal for her which helped immensely.

As Mom approached Stage 7, she began to lose control of the trunk of her body and could no longer sit upright in a wheelchair, (legs already gone). Then she developed the inability to use her arms and hands to any degree. Next to go was the volume of her voice coupled with very short speech and sparse retention of words as well as difficulty swallowing.

Just prior to that, she lost the ability to write, then read, and then watching TV became hard on her as she could not process the action on TV fast enough and it agitated her.

I HATE FTD. It is just a dreadful thief and the worst of it is, through all of this, into Stage 7, she is STILL alert and mostly oriented with much of her memory. Now, in Stage 7, she is at peace, mostly content and has no pain. She is in a NH, it became necessary.

One thing I found was that Mom's behavior was most horrid at home. When she had to be admitted for Skilled Care and she was in a structured setting, she was much calmer.

Some folks with FTD lose their ability to speak or develop speech aberrations early on, my mother never did this.

I am so sorry this was so long. If one has never encountered FTD in it's full dynamics, it is difficult to explain.

There is another category on this message board - the, Caregiver's Forum. This is where these conversations take place and where we support one another and assist with advice when there are challenges to be met.

I wish you well. None of us wanted to go on this journey, but here we are in uncharted waters and no oars. Do come and visit us on the Caregiver's Forum. It is a very nice group of people.

I will keep you in my prayers.
As I hope you will pray for me, and others.