Frontotemporal Dementia (FTD) from a Caregiver - Part 1: First Signs
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- Опубликовано: 12 май 2015
- Caregiver Len Stickler talks about FTD (Frontotemporal Dementia). His wife Marsha has FTD. Len talks about different aspects of this disease.
In this clip Len discusses the first signs of the disease.
Areas covered: Medications, losing track of time, loss of impulse control and support groups.
For more of this interview go to: www.alzsupport.org/FTD.html
re: 3:00. It's true. The loss of memory and the loss of a 'verbal filter' really destroys their friendships and relationships. It's so sad. Ironically, it is when they need the most support, as well.
thanks
I had SEVERE meningitis at 3 months old. My head was very squashed from forcepts also.
I was diagnosed as autistic.
About 20 years ago I had a head scan and it showed early atrophy of frontal lobes.
Im 57 now, and I know I have FTD.
Have been avoiding going to a psychiatrist because I can't explain it!
Finding it so hard to function, speak.
I feel like a shell, but Im still alive.
😔🙏🏻🙏🏻🙏🏻
I would recommend a neurologist, not a psychiatrist. FTD is physiological.🙏🏻
I get angry all the time. We are human, and, this change in someone we love is just overwhelming! Thank you for your video.
I am grateful I haven't had a family member with ANY form of dementia, because I don't have an inordinate amount of patience! If my husband received a dementia diagnosis, I would really have a horrible experience with it!
@@nancyayers6355:
Don’t forget that human beings can CHANGE!
🎉🥳🥰
We can cultivate patience as a discipline, as a practice,
motivated solely from within, by completely free choice.
Or we can be motivated by something outside ourselves like a loved one’s need for more patience from us.
I had an incredibly dear close friend whose disability would trigger exasperation, annoyance, irritability, criticism, in me.
But at the very least, my reactions always eventually felt intolerant, unkind, demanding, insensitive, ignorant!
At most my reactions seemed punitive, cruel, abusive, domineering, bullying.
My love, respect, admiration, gratitude towards my friend motivated me to work on my arrogant ignorance, my sense of entitlement.
Now I just hope she exists somewhere and knows how I feel about how I treated her sometimes.
But really ... I felt awful when she was alive! There was never any justification or excuse for my attitudes or behaviour. 😠😳😱
Changing behaviour like that is such hard work bc often we learned it at such an early age.
And the lessons about the attitudes and behaviour were taught over and over while we were extremely impressionable (no filters! 😞)!
However there are times when our humanity is on the line.
And, we can only be as humane at any given moment as we are capable of, as you said! 👌
Compassion for self; compassion for ‘the Other’!
Beautifully expressed. Thank you.
The hardest part is remembering they are sick. Especially in the beginning.
I’ve been crying watching ftd videos and the bit about your wife swearing has got me belly laughing. Thank you so much
Why were u watching ftd videos
My step dad (who I live with) has just been diagnosed with FTD at 61, we’re going back now and we can remember things that were happening 5 years ago that relate to it. I’ve been saying for two years something was wrong and no one believed me because he was only 61, he’s been diagnosed about 3 months now and this is the first time I’ve allowed myself to research it. Thank you for this video it’s strangely comforting to know these weird things aren’t that weird and they happen to other people with FTD
Also my step dad was doing things like leaving my mum with no card or presents on her birthday or Christmas, staring at women, ignoring her while she was speaking to him and I was so angry, I felt he was treating my mum badly and several times I had him about it and now I know he couldn’t help it. This man raised me and was always good (more than good!) to me and my mum and yet when this happened I somehow was angry, I’ll feel bad about it till the day I die
I suffered from Hashimoto's encephalitis as part of Hashimoto's encephalopathy. Seizures were causing the symptoms that resembled dementia more or less. At some point, my frontal lobe stopped working. I had EEGs done. My MRIs were normal and the symptoms were reversible, treatable and manageable. I teach languages in High School. Some antibodies (eg:TPO) in my immune system attacked my brain. So, yes it looked like dementia in the same way that Anti NMDA receptor autoimmune encephalitis can resemble psychosis. But, the cause is neurological and not psychiatric. When treated early, symptoms of hashimoto's encephalitis are reversible and manageable. These symptoms are similar to symptoms of dementia but it is not dementia. It is Hashimoto's encephalitis. By the way, I was diagnosed in my late 30's. The starting point was likely to be hormonal-pregnancy. With hormonal changes leading to thyroid issues caused by some antibodies attacking the thyroid (hyperthyroidism), leading to thyroid antibodies attacking the brain, leading to symptoms that resemble frontal lobe dementia. But, it was not dementia. It was treatable, reversible and manageable. Be aware of illnesses that can mimic others. Appearances can be misleading.
It's tragic that there is no attention to these complex variables that could lead to better and accurate diagnosis....so that treatment may begin...I no longer have respect for the Medical Community-- any of them...they merely Prescribe.
Sorry to hear that. What are the smptopms?
Len, I wish I had seen this when my younger sister came to live with me as she was finally diagnosed. You're videos are such a generous thing to share. My sister's suffering makes me grateful for my and my own family's health. Caregivers must be willing to expect the unexpected. The changes can come suddenly. You're almost never ready for the weird stuff this disease can cause.
Pura verdade!
Thank you for this series, my 62 year old brother was just diagnosed. It is so complicated, your insight has been invaluable.
My Mom was diagnosed at 53 (now 54), but showed signs long before diagnosis. It has moved fast. It was all little things, but I dismissed it as hormonal.
I just wish she could say "I love you" again...
Sez Bez , thinking back, how far back before diagnosis did your mom show signs of FTD?
Aww my hugs to you dear 🙏🏼
thank you for sharing my younger sister of 56 got a double diagnose of FTP with vascular dementia . It' s hard
Could orfactory issues be evident? She complains over all types of frangrances. A cat food or a fragrant incense that was burnt days earlier. When her brain feels challenged she becomes irrational and down right mean. Strangers (public) with smells she could once tolerate . yes, the language has become more colorful. Thank you for sharing , it is very appreciated. She is like a completely different person these days.
Excellent series Len. Thank you.
Nice, well spoken husband!
My mom passed away from dementia. She went from a robust fun loving woman, to someone no longer able to care for herself, in a diaper and in a wheelchair. When she passed away, she no longer knew who I was. It upsets me that the people responsible for finding out how to treat this awful disease, do nothing more than it different names, different stages, etc. I fought for a year for my mother to no avail. Never mind giving it names! Find out how to treat it!
Tony D , I’m sorry you’re hurt. I’m sure they’re trying to find a cure and haven’t found it yet. They’re not just sitting around thinking of names.
❤ thanks for your video. My mom had alz…. But the experiences were similar. You look back and retrospectively see the signs. Sadly, the main way we learn is from experience. Then, when you have learned to deal with one stage… there is the next stage with its new challenges. Our ignorance and frustration makes it hard to remember our love through all these challenges
Thank you for this. I am crying.
I am so so glad i found your video. My wife has this and her twin sister died of this in December. I am so struggling to cope. i love my wife dearly and will have been married 40 yrs this August. Your video has helped me somewhat so thank you for posting it.
We very much appreciate you doing this. We have a close relative who has it and her husband is her loving caregiver. It's helpful for us to know how to help and especially him.
Watched my mother for seven years with that dreaded disease. 😢 So sad for all us watching .. it progress into the end. 😢
Thank you for posting this interview. Thank you so much for details!!
Excelente presentación. La estoy escuchando otra vez. Estoy impresionada con la compasión y paciencia y amor que él brinda tan generosamente a su esposa.
😎😁" I'm hungry now let's go. ". I'm glad he could chuckle at that in hind sight. This is tragic.
My mother in law just died from FTD 2 days ago. This is the cruelest most awful disease
My mother passed away in 2021, she was diagnosed with bvFTD only one year before. Although she had symptoms for 5 years and was being treated for anxiety and doctors assumed it was an onset of Alzheimer’s. She was physically fit when symptoms started and 5 years later was wheelchair bound, unable speak and then passed away. I had never heard of bvFTD before this, and after researching it saw that many of her symptoms were clear for FTD almost immediately after she started showing symptoms. Unbelievable that doctors didn’t diagnose it for four years.
Thank you for sharing. My sister has been diagnosed at age 51, she has had it for 4 years according to consultant. We put her symptoms down to grief as she her son died fighting in Afghanistan around the same time as she 'got' FTD. My sister also has language problems, repeating herself, 'loosing' words, but not too bad at the moment. If you know of any support groups in the UK, I would be grateful for the information. Thank you again.
I wonder if grief can bring it on...or make it worse
@@michelekisly2535 I am pretty sure it was. Sadly she died not long after I made that comment 🥺
@@jeniferdunn4670 I pray she was accepting of it ---- she would have never stopped grieving over her boy
Often times I make a lot of cryptic connections in a conversation and confuse the ppl I’m talking to but then I explain it and they understand, but it always made me feel insecure because I’m not thinking the same way most others do? Maybe I think too deeply?
It’s hard to tell if you’re functioning normally vs if you’re dealing with a mental problem, so looking at a dementia patient and tracing back to their first ‘signs’, it’s easy to lump yourself into it and think something is wrong with you when there isn’t. You only notice the signs when it becomes too apparent.
Thank you so much for your videos. My husband has been recently diagnosed. We are also in the Dallas area . Can you provide contact information about the support group you attended?
I'm very nervous about having this as he said it seems what I'm going through at first was just normal forgetting,But now it's to where I'm forgetting my closest friends names I've actually don't like to go out or be seeing much because I'm tired of the anger embarrassment of not knowing my friends names,Also when I go to store I'm leaving all groceries in car and this is happening so much it's so scary the feeling of opening your car door and finding your groceries in car a day later or hrs later,Plus washing clothes and and not knowing that I either have clothes to be dried,Also my bills I've paid Bill's that I swear I haven't paid it's these things that have me very scared I'm going to be checked at Barrow's nueaurological center in Phoenix and I'm praying it's just stress or something else going on with me.I hurt so much for people that lose thier loved ones to it,I have an aunt who has this and it's sad to see her struggle. Well I'm leaving it all in God's hands but only being 52 as I said I'm hoping it's something else.
Anthony Aguilar doin any better?
Hello,
How are you doing? I am hoping that you are feeling better. My sister is 58 and she has dementia. My hubby and I are my sister caretaker.
My sister still can walk, speak and feed herself. She can't remember our name often.
🙏🏾May our Creator give you strength and peace with your journey.🙏🏾
Thank you!
Thank you. I am sure my best friend has it.
Very informative video thanks Len.......
It is horrible feeling to endure when your family member has to endure dementia. Despite our efforts in trying a lot of solutions, the outcomes are dismayed! I have recently uncovered the potential cure for dementia. I am gonna recommend my family to try this one. I hope it works.
+William D. Fuentes Has anyone here ever tried this?
betterlife9.com/natural-memory-loss-healing-x6e20d
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How can he be laughing, his wife’s brain is dying…. Someone I love has FTD and it’s awful.
we humans sometimes need humor as a coping mechanism. He's dealing with heavy stuff.
The spoken word, the "diagnosis," could be part of the problem. Humans love to figure things out when maybe it's best to just carry on without putting people in behavioral boxes. Just a thought. We run to doctors for categories and reasons and cures. Just live, people.
How fucking dare laugh at Marsha cursing when you know she is sick.
I had cirrhosis and encephalopathy caused memory loss then I had a liver transplant then I lost oxygen which killed my memory and 40 days later I went over 4 1/2 minutes without oxygen, and then hours starved with oxygen without oxygen this week was the worst I didn’t know where it was I didn’t know my name I didn’t know my wife’s name at first I got scared but now I don’t get scared. I just know that I have a problem, but I don’t remember my childhood on my marriage 44 years I’m told I got in trouble with the law 35 years ago and I went to buy a gun and they told me I couldn’t. And I love to hunt and I want to grab my son is done all the time so he hast to lock it up. I’m not allowed to have one. I don’t understand why they tell me but I don’t believe them, I’m not suicidal I’m in control of my motor skills and function, but I just have severe memory loss and I don’t think that’s fair to me as a human.