Mayo Clinic Connect
Hello, I have been recently diagnosed with this disease. Are there others who have this condition? How are you coping? Are you on any trial tests?I look forward to hearing your replies.JCCR
Liked by Scott, Volunteer Mentor
Hello @jccr Nice to e-meet you here! I am Scott and first and foremost I send you my best wishes on your journey! While I do not have FTD, my mother-in-law did. I was one of her secondary caregivers and would be more than pleased to share what insights I have. Additionally I worked for the national Alzheimer’s and Related Diseases Association in their research group so if I can bring anything from that experience I am happy to do so for you as well.
My MIL did not participate in any trials, but she was one of the early users of Aracept when it was new on the market. It did help her maintain her plateaus.
I send you peace and strength!
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Good morning @jccr I am aware my MIL had ringing in her ears, but a portion of her life was spent selling blasting products in the iron mines, so they sought that was the likely source, but was a guess nothing more. She did suffer from migraine headaches, but those went back to the days of her early years and followed her along, actually decreasing later in her life. However, again, the cause of the decrease was never determined. Sorry I cannot be of more help on this one!
Peace and strength!
I have a question for those with FTD. Are any of you using homeopathic remedies for any symptoms/condition ? My nuerologist recommended I use OTC liquid B-12 drops which I have been taking since my diagnosis. I am not certain if any additional supplements are suggested.
Thank you in advance for your replies.
Good morning @jccr My MIL had FTD and did not take any supplements. However, when she was diagnosed and had the early stages of the disease it was long enough ago that supplements did not have the ‘awareness’ they do now.
I hope you are well. I am curious, at what age was your MIL diagnosed with FTD ? How Was the progression of the disease?
Thank you JCCR
Hi @jccr She showed symptoms, which the family sadly ignored, for about three years before her diagnosis in 1999. She passed away in 2008.
Oh my. I am saddened to hear about the outcome.
My 65 year old US Veteran husband was diagnosed with frontotemporal Dementia about five years ago. He has been prescribed Galantamine. For many years as a family my children and I didn't know what was going on with high temperament and anger. He suffered a concussion while in the Army in 1974 and he suffered amnesia whereas he has no memory of breaking his hand in the accident. We found that out by requesting his VA medical records last year. He has started to act out by dealing some pretty bad people. They have introduced him to drugs and alcohol which he has not partaken in for many many years. He is totally out of control but he does see a psychiatrist at his VA Clinic but lies to her. Are these symptoms of FRONTOTEMPORAL DEMENTIA? I am so afraid for him and myself as we live alone. I am his caretaker as he has several illnesses. How do I handle this? I do not want to leave my husband but I don't want to upset him either. Please help!
Hello, @bczachery, and welcome to Mayo Clinic Connect. Thanks for sharing about your husband and his diagnosis of frontotemporal dementia. You may notice that I moved your message and combined it with this existing discussion on "Frontotemporal Dementia," as I thought it would be beneficial for you to be introduced to other members who have discussed some of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.
I'm sorry to hear about the anger, acting out by dealing with some bad people, and participation with drugs and alcohol. Hoping that others here in this discussion, which has been quiet for a while, like @anncgrl @IndianaScott @jccr @wbuawxman might return and share their experiences with frontotemporal dementia and whether the behavior you have witnessed with you spouse seem to line up with the diagnosis. @hopeful33250 @dianajane @dj81 @ladycat @ilene1 @jennw may also have some input on what you have shared.
I think you might also be interested in the Caregivers group https://connect.mayoclinic.org/group/caregivers/.
It's understandable you feel afraid for you and your husband. Are there social workers you could contact at the VA for some help?
I don't have experience with this disease but wanted to address the fact that he lies to his therapist. If you haven't already, you can call the therapist and not ASK for information BUT tell them what you are experiencing/observing with your husband. This gives them a heads up when they are meeting with him, etc.
Liked by wbuawxman
Hello there. Thank you for your reply and suggestions. I feel like Alice in Wonderland in trying to advocate for myself and finding a local support group in the north Orange County region of California. I spoke with a respresentative from the AFTD and inquired about a group in my region and there is none. I am awaiting receipt of an information packet and curious to read the contents.
anyone have pca postrior cortical atrophy? need to kmow more
I am looking for support as I am depressed and scared no groups in my area on wait list for u of m anxiety and depression need socialization
Liked by Lisa Lucier
@cathy514 – is there someone else who might see you for the anxiety and depression in the meantime?
I'd also like to tag @gingerw and @hopeful33250 to join this conversation as you are experiencing this condition. Is posterior cortical atrophy (PCA) your most recent diagnosis? This is the information on it from the Alzheimer's Association https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/posterior-cortical-atrophy.
Do you get out with friends or relatives at all lately?
@lisalucier Thank you for tagging me in this conversation. @cathy514 Have you contacted the Alzheimer's Assn, for more information? Also, chances are there is a senior services office in your area, that can connect you with groups and social activities that you might enjoy. They will also have a wide variety of resources for you to consider in being able to get some socialization. Are you working with your primary care doctor or neurologist with your need for getting out to see people? They may also have some ideas for you. Think about activities that you enjoy, and would like to do. Do you have a religious community or church that you attend who can offer you support?
Liked by Scott, Volunteer Mentor, Teresa, Volunteer Mentor, Lisa Lucier
I am so sorry to hear of your depression and anxiety. From what I understand from your posts, this is a result of the posterior cortical atrophy, is that correct?
I am from Michigan as well and getting into a U of M program sounds like a good first step. What type of social networks have you involved with in the past or present? I'm thinking of church groups, volunteer activities, community programs (like exercise groups). All of these cost little or nothing to involve yourself with and can provide great socialization as well as personal satisfaction.
I would also encourage you to look for community groups where you could be involved in singing. Singing has been found to be very helpful in brain disorders. There are groups for folks who are not musically talented and allow you to sing. Here is a link that describes these benefits: https://www.alzheimersmusicproject.org/ and also https://www.alzheimers.net/why-music-boosts-brain-activity-in-dementia-patients/.
You might check to see if your insurance covers music therapy.
Liked by Colleen Young, Connect Director, Scott, Volunteer Mentor, wbuawxman, Lisa Lucier ... see all
My husband was diagnosed about five years with Frontal-temporal Dementia. Taking care of him has been a learning experience. In the beginning, his doctor said it was related to old age. He started having problems with his memory in the 90's. He was not officially diagnosed with Frontal until 5 years ago. I did not know how to care for him when his behavior would change. I had to do a lot of research on this illness. Sadly, to say, I found very little research related to this illness in traditional medicine. However, I found a lot of information in the holistic world.
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