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Joined: 6/22/2018
Posts: 6
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Hi, I would like to reach out to anyone who can help me deal with this. Just found out on Wednesday. My Dr. said I have FTD. Need to tell my family but I am afraid. Thanks
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Joined: 12/15/2011
Posts: 16199
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Welcome, Linda. You have received a life changing diagnosis. Things will be different, and even difficult. But you can learn to deal with the new changes. You will have to seek out specific knowledge and support, because what is in the general common knowledge is not useful.
The main thing to know is that the medications that help PWDs (persons with dementia) diagnosed with Alzhemer's Disease do not help PWDs diagnosed with FTD, and may actually make them worse.
Please read several threads on this board, and post questions. We will try to help you.
Iris L.
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Joined: 11/2/2017
Posts: 41
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My husband(59) was diagnosed with FTD June 10Th this year.It is a hard pill to swallow.I can't offer any help as we are only days into the diagnosis.He was being treated for post concussive syndrome a year ago so we have all our ducks in a row,Good luck!
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Joined: 6/22/2018
Posts: 6
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Hi, yes it is a hard pill to swallow. Please keep me informed how your husband is doing. I am trying to find research groups that I might to be able to participate in. I want to fight this any way I can.
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Joined: 6/22/2018
Posts: 6
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Iris, thank you for reaching out. I have been trying to read as much as I can. I also want to participate in any research groups. Want to do what I can to fight this.
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Joined: 12/15/2011
Posts: 16199
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Linda, here are some resources about FTD.
www.theaftd.org
http://memory.ucsf.edu/ftd/overview
https://ftd.med.upenn.edu/about-ftd-related-disorders/how-do-we-diagnose-ftd-disorders
This book is from a caregiver's perspective, but may give you some answers.
What If It's Not Alzheimer's?: A Caregiver's Guide to Dementia
by Lisa Radin
Iris L.
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Joined: 5/20/2014
Posts: 4406
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Welcome to the board Linda. Sorry to hear about your diagnosis. Give yourself some time to digest and process everything and go easy on yourself. Try to look for ways to reduce your stress level. Don't put any pressure on yourself to make major decisions at this time. Don't let others pressure you either. You are so young and this is all so new.
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Joined: 6/22/2018
Posts: 6
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Thank you so much for the kind words. That is what is happening. I am being pressured to make all kinds of decisions on a will, living trust and other things. Met with my Pastor last night and told her I have not even had a chance to process this yet. I know that these things need to be done and they will get done.
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Joined: 6/22/2018
Posts: 6
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Thank you for the information. I will check all of them out. I really appreciate your help!
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Joined: 9/12/2013
Posts: 3549
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why are caregivers coming to patient board to ask about what to do?
Not complaining just notice a huge amount of people responding to eachother here as caregivers.
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Joined: 11/29/2011
Posts: 7035
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Welcome to our world, Linda. I'm so glad youfund us.
Try to relax. Hah!!!!
Did you have a several hour long neuro-psych. Was the neurologist able to tell you which type of FTD you have? There are many different presentations.
Do contact your local Alz. chapter (call 1-800-272-3900 for the # and call during normal business hours. Make sure you are actually speaking to the local. National picks up if local doesn't answer.) Ask about services, support groups, Memory Cafes. Do get to know them.
Best Practices. a life style.
1. Take meds as directed. It's possible you won't have any.
2. Increase physical activity. You want to get that heart pumping at a fastert than normal ragte, for a bit.
3. Increase cognitive exercises. A variety is best. With many FTDs this is not the problem that Alz have.
4. Mediterranean Diet. Search. No smoking, limited alcohol.
5.maintain or increase socialization. We must have human contact.
Do stay with us. You ARE AMONG FRIENDS!!
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Joined: 5/20/2014
Posts: 4406
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Linda,
I'm sorry to hear that you are feeling pressured to get things in order when you have only been diagnosed a week! Please try not to take on the sense of urgency that others around you may be feeling. You have time to get things done when you are ready. Give yourself permission to be selfish, set boundaries and make this all about you.
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Joined: 8/6/2016
Posts: 323
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llee08032 wrote:Linda,
I'm sorry to hear that you are feeling pressured to get things in order when you have only been diagnosed a week! Please try not to take on the sense of urgency that others around you may be feeling. You have time to get things done when you are ready. Give yourself permission to be selfish, set boundaries and make this all about you.
Love this advice...
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Joined: 11/2/2017
Posts: 41
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Linda,I will keep you up to date.Unfortunately,we told his family and they have told us they are done with him.Nice!!!He was on a medication but they have weaned him off all,Our new doctor was the one to make the FTD diagnosis.He is way brighter since off the meds but is still depressed Our doctor will be prescribing cannabis oil next month.Her theory? Doctors know very little about this disease and she is willing to try and monitor anything at this point.For all his life he was a milk drinker but after the initial fall,he would not drink it,Since off the meds he is going to the fridge to drink milk.Weird.Good luck to you and keep us up to date!
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Joined: 12/15/2011
Posts: 16199
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Haven, IMO,we have to find our own paths. The professionals have little to advise us. The best advise is from our peers. Keep reading this board and look at the FTD websites also.
Iris L.
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