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
Hi JCCR, welcome to Connect.
I’m so glad that you started this discussion for people who are living with frontotemporal dementia. I’d like to introduce you to @wbuawxman, who was diagnosed with FTD last fall.
JCCR, were you recently diagnosed? How are you coping?
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.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, wbuawxman, cathy~
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These are such important things to do for yourself, JCCR.
I’d like to introduce you to Teresa, @hopeful33250. Teresa doesn’t have FTD, but she writes about the importance of socialization living with Parkinson’s. I think you might like to read and join in this discussion where members are talking about the health benefits of socialization.
– Socialization and Parkinson’s Disease http://mayocl.in/2nTGkSN
Liked by wbuawxman
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!
Liked by Colleen Young, Connect Director, wbuawxman
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
Liked by Colleen Young, Connect Director
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.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
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.
Liked by Teresa, Volunteer Mentor
I have not heard about Aracept. My husband has seen some benefit from Seroquel but that has been a peripheral event as he uses it to help him sleep. His tremor in his right had has improved 95% and his walking has improved enough that I notice it. I am not sure that he is aware of either change nor would tie it back to the Seroquel. Do you recommend I discuss the Aracept with his doctor? Thanks!
Liked by Scott, Volunteer Mentor, Teresa, Volunteer Mentor
Good morning @anncgrl I would think it wouldn’t hurt to at least ask your husband’s GP what he thinks of Aracept.
Also my wife found Seroquel to be a significant help to her as she progressed through her journey with brain cancer, which brought with it many symptoms similar to dementia.
@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. 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.
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.
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.
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.
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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