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47yr old FTD and TERRIFIED
StacieLeigh
Posted: Tuesday, August 10, 2021 5:55 PM
Joined: 8/10/2021
Posts: 3


Hello. I'm new here. My name is Stacie. I'm 47 and was diagnosed FTD in 2017 following an injury sustained during routine brain surgery for VP Shunt placement in 2007. I noticed signs of declination in cognition then but for the most part symptoms were minor until the last year. Now, I am very embarrassed to admit that I have emotional outbursts and times where I feel out of control. I get confused more often and sometimes I have moments of pure clarity? Just in the last week I lost 3 family relationships because they visited our home during one such outburst. Through my husband they made it clear I am no longer welcome in their home. Even after several apologies, they have not responded. They are well aware of my diagnosis but are my husbands kids and grandchild so I don't expect they would care to know about my issues, but I love them all the same and it hurts like heck. It's like my filters have broken? The last thing on earth I want is to hurt anyone. I know this is FTD progressing. There doesn't seem to be many resources in my area, Grand Junction, CO, for young people diagnosed with FTD or EO. I think I'm glad I've found this board. I'm sure someone here can relate? (crosses my fingers xx). I do have a "team" of doctors treating me for various physical issues due to complication from Lyme's Disease. They are all aware of my diagnosis, however none of them seem very willing to talk about it with my husband and I? Has anyone else found that to be true? Is it because I'm younger? Thanks for reading. God bless.
TommyT
Posted: Tuesday, August 10, 2021 6:15 PM
Joined: 3/23/2012
Posts: 41


Hello Stacie! I don't have FTD but I do have EOAD. I know that FTD can result in a lot of personality problems. Sorry. Guess that we have some similarities in the fact that we were diagnosed at an early age. I was 58 when dx'd. Now I'm 72.

Keep looking, I'm sure you can find a good relationship that can understand.

Good luck,

Tom


Iris L.
Posted: Tuesday, August 10, 2021 6:26 PM
Joined: 12/15/2011
Posts: 17587


Welcome, Stacie.  Wow, you do have a complicated medical history!  But you have held up for years.


To answer your questions yes, your filter is diminished.  I would not say broken, because you seem to have some awareness.  


Dementia from brain injuries usually is not progressive.  You say you are progressing.  It's hard for doctors to talk  to you because they don't have much to tell you.  Are you being tested or evaluated periodically?


This particular board is slow.  But there is a Spouse/Partner board and I believe a few members are caring for spouses with FTD.  Would your husband be willing to join them?  You as a patient are allowed to post on any board.  But to be  frank, they might feel reluctant to be totally up front because they might have some harsh things to say and they would  not want to hurt your feelings. But if you are up for it, go ahead and post.


There is an FTD organization, also UCSF has a good website with a lot of information.  Unfortunately I don't have it.


Some medications used for patients with Alzheimer's  Disease are very dangerous for patients with FTD.  You should learn what they are and avoid them.


I'm glad you found us.  There is a lot of information here.  Be good to yourself and avoid stress,  especially stressful relatives who are not willing to be understanding and compassionate of a sick woman. 


Iris 


StacieLeigh
Posted: Wednesday, August 11, 2021 12:07 PM
Joined: 8/10/2021
Posts: 3


Hi Tom. Thank you for your kind words of encouragement. They are very appreciated. Sometimes it does help just to know that your not alone out there.
StacieLeigh
Posted: Wednesday, August 11, 2021 12:26 PM
Joined: 8/10/2021
Posts: 3


Thanks so much Iris for the information and your kind words of advice. I'll talk to my husband about the spouse board. But if there is one thing I have learned these last ten years, you have to be your own advocate for sure. I think one of the hardest things is still being cognizant and recognizing these changes. I was my grandmother's caregiver for the last 10 years of her life that she had dementia. As I had been deemed 100% disabled and no longer able to keep a job, the role was perfect for me and I wouldn't have traded those years for anything. My current clinic has behavioral therapist that do test my cognition with short form tests, but nothing like the tests they did to diagnose me. Those tests were a full two day visit, two 8 hour days in Lincoln, NE. Oh, I ramble. So sorry. Again thank you! Have a great day!
TommyT
Posted: Wednesday, August 11, 2021 12:43 PM
Joined: 3/23/2012
Posts: 41


Hi Stacie! You definitely are not alone. Sometimes it feels that way because there are only a few of us that can carry on a conversation. And even fewer that work with computers/social media. I tried to open up a Younger On-Set dementia support group. Did all the studies and was envoled with the Alzheimer's message board as a Peer Volunteer. Nobody showed up! My studies indicated that there must be over 100,000 people with dementia within driving distance of Harriburg, PA. 

You found me! Keep looking and somebody will join us.

Tom


tjrjr
Posted: Friday, August 20, 2021 4:03 PM
Joined: 4/17/2016
Posts: 43


Stacie 

Welcome and there is a lot of info and support to be had from those of us going through the same situations. My Jennifer was diagnosed at 49 after years of drs trying to figure out what was wrong. 

Tom 


Scared wife of EO
Posted: Monday, October 4, 2021 1:39 PM
Joined: 10/4/2021
Posts: 1


Hi Tom;

My DH was recently diagnosed at the age of 56 (EO) and we have 3 teenage children.  I am trying to understand what to expect over the next 5 years, 10 years etc to plan our life.  We were expecting to retire and travel, now I don't know how to move forward.  Can you provide any insight into your journey?  I know the rate of progression is different for everyone and I am terrified everytime someone says we have 5-20 years after diagnosis.  Neither is long enough, but I want to understand quality of life.    

 


jfkoc
Posted: Wednesday, October 13, 2021 10:21 AM
Joined: 12/4/2011
Posts: 20255


Stacie....here is the link to UCSF Iris mentioned. Sorry I could not make it a live link. 

https://memory.ucsf.edu/dementia/ftd

They have a lot of information. I thought it interesting that they discuss possible increase in creativity...music and art.Would you be interested in painting? I paint (poorly) and love it. There are some wonderful sites online for info and or supplies. Lett me know if I can help.

Please stay in touch here. Caregivers as well as those with dementia are here to share both info and support!


AndreeAndree
Posted: Monday, October 18, 2021 8:34 AM
Joined: 10/8/2020
Posts: 11


Hi Stacy, I was diagnosed with dementia last year at age 56.  I started a facebook support group called "Memory Warriors" and only people WITH dementia are allowed to join.  There are many people in the support group that are younger, like you.  You are NOT alone!
tjrjr
Posted: Thursday, October 21, 2021 7:48 AM
Joined: 4/17/2016
Posts: 43


Stacey and Scared wife of EO

I tried to reply 2 weeks ago but had a hard time putting my thoughts to written word. That is the alzheimers manifesting itself in my life. There is not enough time in a day to do everything my Jennifer needs and then we have all the other aspects of living like work,bills,children,parents who need help and trying to fit some time in just for myself so I don't get totally overwhelmed. The best advice I can give is make sure you consult an elder care lawyer and get your families affairs in order and Taking from a twelve step program the one day at a time philosophy(some times its 1 minute at a time). I finally set up getting my Jennifer into a MC/Nursing facility. Even though We have a 24 hr aid at our house she needs more than we can offer. There is so much going on and Jennifer hasn't verbally communicated in over a year I would give anything to go back and do it all over again. This time relishing every moment, good and bad along the twisted journey that this disease throws our way. I have a vacation planned for January to go skiing with my son and daughter at a resort that we would go to every year for 20 years. this will be the first time in 7 years that I have taken more than a weekend off. The memories and good times had with Jennifer will be hard to deal with this time. Could write all morning about what we went through but there is no way to really convey how you will have to deal and adapt with the changes to every thing you planned for in your life together..end of rant and babbling. 

Tom


tjrjr
Posted: Thursday, October 21, 2021 8:00 AM
Joined: 4/17/2016
Posts: 43


Also find a good psychiatrist and neurologist that know about dementia. the team I have are married and they always tell me they are more concerned about my health and well being. we need to take care of ourselves so we can take care of our loved ones.