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 @uthalia Welcome to Connect. I am sorry to read of your husband’s diagnosis. My mother-in-law had FTD too. It is a very challenging disease for those who suffer from it and for their caregivers for sure.
You mention finding worthwhile information on the disease in holistic materials. Are there any particular ones you would recommend?
Strength, courage, and peace
Liked by Lisa Lucier
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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wow …. maybe 20 years to diagnosis??
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
what if there's
no support groups in my area what do I do I feel so isolated and need socialiization
Hi @cathy514 I, too, struggled greatly with the isolation often imposed on caregivers. In my case there were no local groups either so I worked to fill that gap electronically.
Have you checked out the Caregiving Discussion group here on Mayo Connect? You can access it here — https://connect.mayoclinic.org/group/caregivers/
I was a fundraiser prior to losing that job due to the demands of caregiving and so was also a very social person. I found electronic groups to be a help in filling that much needed area of need for me. Best of all, for me, was I could access it, post, or respond at any time of the day or night. In my wife's case that was often in the very early hours of the morning — or very late at night depending on how you look at it 🙂
I also worked to maintain just a couple of email friendships with friends of old who understood my situation and were OK with me not being able to respond quickly and/or doing it at odd hours. While not ideal these did really help to fill that void for me.
While not social, I also began to write more, which also helped me feel like I was not so alone at that time in my life.
I know each of us are different, but I hope something might be of help.
What have you tried so far to break the isolation?
Strength, courage, and peace
I was diagnosed with postrial cortical atrophy at last visit u of m changed to cortical basil syndrome and I see there is a mayo clinical bad a clinical study for my condition please how do I apply to be a participant
I do have a study buddy and means to stayf for the study please can I apply and information so my neuro degenerate dr as to what she needs to provide as I was told this disease is to rare and u o m has no treatment options other than aricip which didn't help so now prescribe remeron forvinsomnia
Hi @cathy514, that must be frustrating to have no potential treatments near you for corticobasal syndrome. As you were asking, here is a link to more information on how you can volunteer for a study Mayo Clinic is doing: https://www.mayo.edu/research/clinical-trials/deciding-to-volunteer
Liked by Ginger, Volunteer Mentor
FTD is also aka young onset dementia. Those below 60 with Dementia is YOD or FTD. There is no cure. Current available medication only alleviates the symptoms only. FTD will have personality change and affect the frontal lobes. The impact will be felt sooner than later.
Hi, @ngyose – apologies for the delay in responding to your post, but wanted to welcome you warmly to Mayo Clinic Connect.
By YOD, I'm assuming you are talking about young-onset dementia? Do you or someone you know well have frontotemporal dementia?
Yes. YOD is young onset dementia. There is no focus on it. All i hear is about Alzheimer or dementia in above 65. My wife had it when she was in her late 50s. Nobody knows how to handle this. Stigmatised and fallen by the wayside.This is what that is in Singapore. It is the same as in other places as well.
Hi, @ngyose – young-onset dementia would be a great topic to start in the Brain & Nervous System group on Connect https://connect.mayoclinic.org/group/brain-and-nerve-diseases/, if you'd be willing. I agree – it could certainly use more attention, and I'd like to gather some members around that topic. You can start a discussion anytime by clicking on the charcoal gray box on that page that says "Start a Discussion."
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