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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
Replies to "Hi JCCR ... Welcome to the journey. I was diagnosed with FTD last August. There haven't..."
@wbuawxman Hello Bill: First of all, I want to congratulate you on the proactive way you are handling this disorder. Your involvement in educating yourself and joining groups is a great way to tackle any sort of brain disorder. Thank you for the great suggestions you offered to @jccr and others in this discussion about FTD. NAMI is a great organization and they have lots of support groups across the country. The AFTD website should also be a great resource. Keep in touch with us and continue sharing the ways in which you have found support, help and education. We value your input! Teresa
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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My husband has FTD and had chronic, debilitating depression for years. He has been, as you well know, on many different medications over the years. As relates to FTD, and this is anecdotal and was unexpected benefit, my husband asked for something new to help him sleep. They weaned him off zyprexa and another medication and started him on Seroquel. I had to lower the dose because it made him too out of it at night but he had fairly strong tremors in his right hand and they have stopped. Also, his walking improved. Still not great but a noticeable improvement. I am volunteering with a AFTD to start a support group in our area because education about AFTD is so important. It is a journey. I applaud your choosing to go to the conference. I would love to go but not going to happen this time. I see a psychiatrist to help me stay real and to be effective. I find that an amazing resource also.