FTD Fronto-Temporal Degeneration
Non-Alzheimer's type dementias present and are treated differently. FTD is commonly misdiagnosed, causing more frustration. Share your story!
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What's New Today
about 1 month ago
HI, I'm new here. My husband has been having memory another problems since late 2012. He suffered with chronic pain for years before this and still does. Drs. Say his symptoms are anxiety and depression but seems more like FTD or early onset Alzheimer's from what I've read. He takes meds for depression and anxiety which do help those symptoms but he does and says things and has such a hard time with memory that I truly feel in my gut that he has early dementia. His neurologists are at a great university hospital so I also want to believe they must know what their talking about. I'm considering taking him to a recommended nuerologist that practices in a small nearby town. He diagnosed a friends husband with early onset Alzheimer's after other nuerologist missed it. Sometimes I wonder if I am reading too much into my husbands symptoms but wow how he has changed and the symptoms just keep telling me it's more that anxiety and depression. I really need a support group as both our families keep their distance. Our kids have been great but I think they are also in denial somewhat. They are 16-26 and are pretty busy with their own lives right now. However, we can call on them for help around the house which just bought and are fixing up. It needs a lot of repairs.
3 months ago
An amazing thing happened today. A friend of ours may also be in a similar situation to DH with some mental health, memory, falling over etc issues. He had also been undergoing tests and hasn't wanted to tell anyone what they are..
Although the symptoms are somewhat different they are similar enough and worrying enough for Vince to say - I think he has something similar to me and Mum (ie a cognitive impairment / dementia issue) I would like to have coffee with him and let him know its ok to talk and I'm here for him. That we both are....
What a difference a good day makes!
It also makes me wonder if people with FTD do have insight sometimes, since this is only 2 days after the nothing is wrong with me period...
3 months ago
Well, my husband had an upswing for awhile. If you are new to this journey, anticipate ups and downs, shifting symptoms...it's a long list. For my husband walking, getting up and down, falling or stumbling a great deal and getting out of breath are far more prevalent at one time than the other. The doctors say the better times will shorten and the difficult times will lengthen. His short term memory runs about the same way though he is slowly losing ground with use of things like the t.v. remotes and a few other sequential tasks. His long term memory is better than mine. lol So he remembers details from five or ten years ago but I show him the use of the remotes several times a day and answer time based questions over and over again. Just finished with a doctor's visits and, other than the FTD related issues, he is healthy. We made a decision not to see the neurologist again. There is no value they can add and they seem lost with the diagnosis. I am doing well as his caregiver at this point. I am going to try to change my sleep pattern if possible. He goes to bed by7:00 at the latest and is up at one and three wanting something to eat. Then back to bed for a few hours. I am asking to volunteer in my area through the AFTD site. I hope to start an FTD support group in our are and, if they will train me, help educate our communities about FTD. I am submitting a form to that effect. We are taking this journey one step at a time. God bless all y'all!
4 months ago
Hi Dear Friends, My journey has come to an end. My husband passed away surrounded by all of us (three sons and me) Dec. 29th and the funeral is over. It was perfect. The obit does not mention FTD because I wanted him remembered as the family and professional person he was. A few more administrative details (thank you cards, returning calls, storing away paperwork) and I am onto a new chapter as a Widow. I grieved for so long, that now I am relieved - for him and for me. Happy New Year 2017! Let's see what else it will bring! All the best, Sandi
Shirley C said...
5 months ago
Hello Everyone-I haven't posted anything in a while. Last post was about my husband's Worsening behaviors. Anger, threats, and taking off from the house on foot. Tried adjusting meds, and having go to "The Club" adult day care the 4 days a week they are open. Nothing helped and I just couldn't handle him anymore. Had to call 911 to help me get him back home (after having to find him first) several times. He would say how he wanted to punch "that cop" in the nose or how he could "take him down". Raised his fists at me while I'm driving, or trying to jump out of the car, on and on with son living at home (Williams Syndrome). Calling other son out to fight when son found him out walking and said "Dad get in the car and let's go home". Had to at the final straw have him transported to the Dr.,s office and then he was referred to ACE unit (Acute Care for Elderly). He was there for a week seeing another doctor. When time to be discharged the doctor asked me how I felt about him coming home and I said that I honestly can't do it. He said FTD is very difficult and the anger issues with my husband are very much associated. I got a lot of help and support from the Social Workers and the Memory Care Facility that has "The Club" arranged a spot for him in one of their homes. He has been ther for 3 weeks. Thankfully it is a place he is familiar with and he can still go to The Club 4 days a week. The issues have started to re surface though in the past week. So much more to this than I'm posting about right now. Just an update and will be keeping in the loop. Past month it was very difficult. Hope to hear from you
An anonymous caregiver said...
5 months ago
My husband has been symptomatic for frontal lobe atrophy for over seven years. The symptoms have increased so slowly that it was quite a long time before we recognized and admitted that permanent changes were apparent and dramatic. My husband's symptoms began as weakness in his legs and back. which caused him to stumble and fall. He also had confused thinking. The symptoms would be worse at times and then much better. Never a return to normal but enough of a shift that describing his symptoms and getting an accurate diagnosis proved to be challenging. During this time we were at a loss to understand what was happening. After a diagnosis of Parkinson's was proven inaccurate by the neurologist we were left with little hope of a diagnosis. Meanwhile the symptoms were progressing with periods of time when things seemed to be getting better. And so began hospitalization after hospitalization and rehab/nursing home visits to strengthen my husband's legs. Doctors have told us that the good times will occur less and less often and the hard times will last longer and worsen. At this point many of the emotional and memory symptoms are also in play. He spent two two weeks eating very little and drinking very little. Now he is hungry and thirsty but not for foods he use to enjoy. He sleeps about 18 hours a day. I am home or close by. He wears Depends and goes through times when he feels the urge to urinate and times when he does not feel it and wets the bed. I need to work about 20 hours a week to supplement our income but I cannot because the level of care needed fluctuates so dramatically. I am seeking assistance through DSS and a program called CAPs which will pay me to be a caretaker of my husband and provide support services. My goal is to keep him home as long as possible.I have long since failed to pay attention to our business matters unless they are critical. I don't have the emotional energy.and I will clean up the mess when my husband passes. I have grieved the loss of my husband's company. We can talk and have a laugh but he is often lacking in empathy or sentimentality. This journey is incredibly difficult. I pray that each family coping with all the insanity finds some peace of mind. More to come later... ' '
I have a dilemma - will DH who is showing signs of dementia and in the process of getting diagnosed, benefit from attending a Carers Support Group with me to learn about his Mum's condition and how to help her?
This would be solely to deal with her issues, not his -unless he felt like sharing ... Unlikely at this stage (although I would benefit I'm sure!!)
They seem to have different forms and he doesn't see her in himself! Or will it be harder for him?
Although I believe he has the bvftd component of no self awareness.
With MIL likely to be diagnosed with mild-moderate dementia pretty soon based on the mini mental assessment and what we've been witnessing I am tempted to start attending a local Carers Support Group WITH DH.
He is interested in helping his Mum. Although some things he can't grasp - 'if she needs to learn to use a walking frame we'll just MAKE her learn how - drive it into her .... It's important etc'. Even though I've explained that sometimes the part of the brain that learns new things doesn't work like that any more.
Coming from someone else it has always been more effective!
I'm so torn, but want to do what's best for both of them. I think DH would benefit from the information.
Thanks in advance
Today was "interesting".
We started getting Mum in Law tested because she has started losing her balance. We know she has dementia of some sort and she is getting more frail this year. Recently she has started falling, or nearly falling. So start the tests.
Today was the general over 75 test with mini-mental and she failed the short term memory stuff - couldn't recall 3 words, or repeat them back, couldn't copy an image of 2 shapes and couldn't write a short sentence (we picked "my name is ..".) She named items as they were pointed out, knows they day and date though.
Also has blocked ears which we are now putting softening stuff in, for syringing next week, plus eye tests and blood tests tomorrow. Then referral to a fall clinic in the near future .... She's happy and not at all aware of what the test was about. So calm and placid.
Unfortunately (or fortunately?) DH didn't come in with his mum for the testing, he took his dad to a coffee shop. So now he says she didn't do so well because of the pressure of being tested! And that the whole family has that problem! Ack.
he's all about " making her learn" to use a walking frame. 'Well, she'll just have to learn. We'll drive it into her'. double ack!
I've tried explaining that the part of her brain that learns new things isn't working so we can't force her to learn something - it might just upset her and make it worse .... He just can't understand it because of his cognitive issues
Last night DH and I had the weirdest conversation - I felt like I entered thr twilight zone!
We had a lovely dinner out celebrating his birthday and our 22nd anniversary (defacto) which is later in the week.
He held my hand and said he was sorry for being a bit difficult over the past 2 years and that now things will be better.
He has NEVER apologised ever and it is the first time he has recognised things might have been even remotely difficult for me! wow - I was stunned, said thank you and have been waiting for any reverting to 'normal' - all has been good today!
I even heard him telling an old school friend about his 'memory problems' today - quite openly.
I'm enjoying the moment - not sure what to make of this change at all!
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