1. < Brain & Nervous System

Frontotemporal Dementia

Posted by jccr @jccr, Mar 24, 2017

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

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jccr | @jccr | Mar 29, 2017
In reply to @jccr "Yes, I was diagnosed last fall. I am no longer in the denial phase. I am..." + (show)
@jccr

Yes, I was diagnosed last fall. I am no longer in the denial phase. I am doing my best to incorporate daily exercise, cognitive exercises, relaxation, and socialization. I have good and bad days, but remember to embrace every day as an opportunity to be good to myself.

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Hello. Thank you Colleen for encouraging me to start this forum. I am excited to see the responses and that there are other individuals who are familiar with this disease.

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jccr | @jccr | Mar 29, 2017
In reply to @IndianaScott "Hello @jccr Nice to e-meet you here! I am Scott and first and foremost I send..." + (show)
@IndianaScott

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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Hello Scott. Thank you for your post. It is encouraging to know you are knowledgeable of FTD and sad to hear that you MIL was also affected by the disease. I have a question, did your MIL have ear ringing and pressure headaches above the eyes? I have been experiencing these new symptoms this week.
Thank you for your time.

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jccr | @jccr | Mar 29, 2017
In reply to @hopeful33250 "Hello @jccr and welcome to Mayo Connect. First of all, I want to congratulate you on..." + (show)
@hopeful33250

Hello @jccr and welcome to Mayo Connect. First of all, I want to congratulate you on being proactive in your treatment. Exercise, both cognitive and physical are great ways to keep any illness from becoming your major focus. Have you looked into support groups that might be available in your locale? When you meet with others who have a similar diagnosis you find strength from their stories and their victories. Suppport groups also provide the social interaction which is so important for any brain disorder. I'm sure you will find much encouragement as you join with others. In the meantime, continue to use Mayo Connect as a sounding board for your concerns. We have all faced serious illnesses and we understand how difficult it can be to deal with. Keep in touch and let us know how you are doing. Teresa

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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.

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1 reply
jccr | @jccr | Mar 29, 2017
In reply to @wbuawxman "Hi JCCR ... Welcome to the journey. I was diagnosed with FTD last August. There haven't..." + (show)
@wbuawxman

Hi JCCR ...

Welcome to the journey. I was diagnosed with FTD last August. There haven't been too many symptoms other than some mild word issues and subtle mood shifts. Given I already have chronic depression and it's also one of the symptoms of FTD, it can make things uncertain at times.... is it the usual depression, or is it my FTD getting worse ... that kind of thing. I'm not sure about getting support from groups specific to FTD, but there are a number of other brain health support groups that may be able to help, such as National Alliance on Mental Illness (NAMI: http://www.nami.org/http://www.nami.org/). There is also a specific website dedicated to the various forms of frontotemporal degeneration/dementia called The Association for Frontotemporal Degeneration (AFTD: https://www.theaftd.org/) which more specifically deals with this set of brain diseases. The AFTD is having its 2017 Education Conference on Friday, May 5th in Baltimore, MD. I intend to go to this conference and get myself educated, and get some support from those who have dealt with FTD personally and as physicians and psychologists. There appears to be some promising research which may eventually result in clinical trials ... and the AFTD website would be a great way to keep track of anything coming down the pike that might prove helpful

I've found individual and group therapy to be helpful, and I was already in therapy for the depression .There are evidently some antidepressant and other psychoactive drugs that help. I was already on a drug regimen which turns out to be potentially useful. If you have the resources, do get yourself into some sort of counseling/therapy. I find it important to get resources together for support .... especially if I'm feeling like withdrawing.

Feel free to get in touch with me.

Bill

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Hello Bill. Thank you for your reply and for sharing. I agree with you that a support group would be a benefit as there would be an understanding of the disease with the participants. I am currently participating in cognitive therapy sessions which is helping me to incorporate new routine behaviors.
Thank you for your encouragement.

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jccr | @jccr | Mar 29, 2017

I am learning that FTD is not a well known disease. As in my case, I was not familiar with this diagnoses and learned there is a lot of research to be explored.
Peace and comfort to you all. JCCR

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Mentor
Scott, Volunteer Mentor | @IndianaScott | Mar 30, 2017
In reply to @IndianaScott "Hello @jccr Nice to e-meet you here! I am Scott and first and foremost I send..." + (show)
@IndianaScott

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!

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jccr | @jccr | Apr 9, 2017

Good morning,
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.

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3 replies
Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 9, 2017
In reply to @jccr "Good morning, I have a question for those with FTD. Are any of you using homeopathic..." + (show)
@jccr

Good morning,
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.

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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.

REPLY
jccr | @jccr | Apr 21, 2017
In reply to @jccr "Good morning, I have a question for those with FTD. Are any of you using homeopathic..." + (show)
@jccr

Good morning,
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.

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Hello,
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

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Apr 22, 2017
In reply to @jccr "Good morning, I have a question for those with FTD. Are any of you using homeopathic..." + (show)
@jccr

Good morning,
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.

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Hi @jccr She showed symptoms, which the family sadly ignored, for about three years before her diagnosis in 1999. She passed away in 2008.

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