About

Member has chosen to not make this information public.

Posts (5)

Jun 20, 2017 · Video Q&A about Innovations in Neurosciences Leadership Forum in Brain & Nervous System

Has there been any new developments on treatment for Frontotemporal Degeneration and Dementia? Any sign we’re making progress toward a cure?

Mar 26, 2017 · Frontotemporal Dementia in Brain & Nervous System

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

Jan 9, 2017 · Are there any other caregivers of Frontotemporal Degeneration out there? in Caregivers

Is there a more appropriate place for me to be to discuss FTD diagnoses, either here or on (maybe) the FTD site?

Jan 9, 2017 · Are there any other caregivers of Frontotemporal Degeneration out there? in Caregivers

Yes it is recent …. last August/September through CAT scan and confirmation MRI. I’m still able to work full time; the diagnosis was based on smaller than normal frontotemporal lobes in my brain that came out of those procedures. Hence the uncertainty I’m expressing.

Jan 7, 2017 · Are there any other caregivers of Frontotemporal Degeneration out there? in Caregivers

I could use that too. I’m very early along and just have a baseline of my frontotemporal lobes. Of course, I’m hoping that I just have small frontotemporal lobes! I think it’s called the “denial” phase.