View unanswered posts | View active topics It is currently Thu Jul 31, 2014 1:20 am



Reply to topic  [ 21 posts ]  Go to page 1, 2  Next
 Youngest Age Onset ????? 
Author Message

Joined: Thu Jan 17, 2008 2:22 am
Posts: 3
Location: So Cal.
Post Youngest Age Onset ?????
Just found this site and have found it to be very helpful. Reading many of these posts I see that many LBD's are older. For years ( 2004 - now) have wondered about my husbands DX and the true DX. With time I have seen a slow decline in so many ways mentioned on this forum. My husband is now 44 and doctor told me NO to my question in 2004 about possiblity of Lewy Body, and now I think it was due to his age. He has the dementia and PD symptoms and MANY other signs on this site. MRI was done and Dr. said TIA's ( at age 39 or 40'ish) and also had first grand mal seizure then about year later other seizures. I remember the nurse saying something about what was on his MRI and the part of the brain it was on ( Gray matter, & base of the brain stem ?????? ) My husbands changes have been real hard on me ( and the family - two younger boys) and not truely knowing the DX of what may be causing his decline. I think doctors are afraid to DX LBD to someone at a young age, and that is if they really know about LBD.

So after all this, MY QUESTION IS :
What is the youngest age that a person has been DX with LBD.


I'm hoping that my question may open up doors to the young people with this condition and that more doctors will not be afraid to DX it to the young suffers out there. Maybe we can take the age discrimination off of LBD and look at this disease as a person with particular symptoms. My husbands decline may not be as quick those that are older, but he has almost all the symptoms and maybe some day it will be found that persons that have LBD may have slower decline if younger, but the decline and pain of life's changes are there, no matter what age. It is hard to live day to day with someone you love and see them suffer with the different symptoms and to be told that there is nothing they can do, "lets just hope the brain repairs itself ( due to TIA's - which I now question was really TIA"s) when in the care takers heart you know there is more then hope of repair, with decline happening rather then getting better. I just want to know what to expect and how to handle each stage so I can prepare to the best of my ability and how to handle each stage with my boys to the best of their development. It's a family thing.....


Sorry for so much YADA YADA YADA, but it feels good to ask questions. I've so long asked what is happening and why to us.?

Jo9 - so cal.


Mon Jan 28, 2008 10:44 pm
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 718
Location: LA
Post Age considered
I'm so sorry for what you seem to be facing. I think you may need to read the posts by RWGraves. He is carrying the same burdens as your loved one and he writes many messages which have helped me understand what my dear one is experiencing. Hang tough and you can do it. You can't do it all at one time but you can do one thing, and then another and then another.
One post in particular that caught my eye, In the BEHAVIORAL ISSUES find the subject, "I'm really worried". That will let you know why I sent you to his writings and after that you may want to browse some of his other notes.

I'm so sorry, dorthea

_________________
"See this lady, she's 85, but she's nice"


Tue Jan 29, 2008 1:13 am
Profile

Joined: Fri Jul 20, 2007 10:53 am
Posts: 38
Location: Santa Rosa, California
Post 
Dear Jo9:

Currently, I have a 58 yr old sister diagnosed with LBD and a 48 year old brother that is concerned that his REM sleep disorder may be a precursor. Our father died of LBD and we have a first cousin with Parkinson's.

My best advice is to have him seen by a neurologist that specializes in movement disorders with a dementia component. Our best resource has been UC San Francisco, but I know that UCLA has a good memory and aging center. The longer an accurate diagnosis is delayed - it may then be too late to intervene with the best meds to maintain his cognition.

To someone his age, the Parkinson's symptoms seems secondary. The biggest issue becomes the rate of cognitive decline. Relief of stress, exercise and access to good information becomes paramount.

The best of luck to you.

_________________
Lost my father to LBD in 1996, 61 yr old sister LBD DX in 2007, 52 yr old brother w/PD DX in 2010, 1st cousin w/PD DX in 2005


Tue Jan 29, 2008 2:24 am
Profile

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post 
My husband, Ron, is 57 years old. Diagnosed w/Parkinson's about 5 years ago but now diagnosed with LBD. Symptoms were never like Parkinson's - always LBD symptoms. Can't seem to get meds balanced. It is crazeeeee around here much of the time. We are going to a Parkinson's Center of Excellence at Vanderbilt in Nashville and think the doctor is fabulous but I wish there were an LBD specialist we could go see - even though he would probably prescribe the same meds... at least I would know we are doing everything possible. I keep thinking this can't be real and surely there is something they have missed and we will wake up tomorrow and all will be better. Cheryl


Tue Jan 29, 2008 10:19 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Jo 9,

Re: young-age LBDers

See earleyrunner's post here:
http://www.lewybodydementia.org/forum/v ... .php?t=613
earleyrunner's (Janet's) husband must be mid- to late-40s.

See tjarvela's post here:
http://www.lewybodydementia.org/forum/v ... .php?t=619
tjarvela (age 22) thinks he might be getting PD or LBD. His father (47) has been DX'd with LBD.

Robin


Tue Jan 29, 2008 11:25 pm
Profile

Joined: Sun Nov 25, 2007 6:59 pm
Posts: 52
Location: columbia, sc
Post 
jo 9

Per your question about the youngest age that was confirmed I am aware of a reported case where the individual was a 13 years old female. The diagnosis was confirmed after her death that occurred very quickly after her initial symptoms. I have the article somewhere and will search it out if it would be of value. We of course know of LBD members, who diagnosed and are in 40's. I was diagnosed at 57 w/ symptoms first appearing at age 53. Finally, and this is my opinion only...that as research progresses I think that age and symtoms/dementia/LBD will be viewed much differently. I think we are quickly moving past the old assumption that dementia is something that only affected the elderly. I think we will also find, again just my belief, that symptoms of dementia including LBD were probably presenting at a much earlier age then when the patient first recognized symptoms and then sought medical help.

lars


Thu Jan 31, 2008 12:35 pm
Profile

Joined: Fri Jul 20, 2007 10:53 am
Posts: 38
Location: Santa Rosa, California
Post 
My sister's significant onset was approximately 5 years ago, also at age 53. However, she lost her sense of smell 23 years ago (age 35) - now a known precursor. So, which is her true date of onset!? I agree that science has just started unlocking and understanding the early signs of these diseases. Those with genetic lines vs. random onset may provide even more information.

_________________
Lost my father to LBD in 1996, 61 yr old sister LBD DX in 2007, 52 yr old brother w/PD DX in 2010, 1st cousin w/PD DX in 2005


Thu Jan 31, 2008 3:19 pm
Profile

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post 
I see that you are in So. Calif. -- we are, too. You have several options closer than San Francisco for a diagnosis by LBD experts. One is UC-San Diego. The person who is head of their memory institute is on the SAC of LBDA (Galasko). We go to the Mayo Clinic in Scottsdale, which is where my husband first got an accurate dx (misdiagnosed for several years before that). Also, as someone mentioned, UCLA (or is it USC) has an outstanding program as well. Good luck!

_________________
Renata (and Jerome-in-Heaven)


Sat Feb 02, 2008 8:49 pm
Profile

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post to anyone who will listen and to hellbuns re sister
How is your sister doing?? Ron is going through a pretty bad time period right now... ie trying to put both shoes on one foot, not remembering how to turn lights off, wanting me here 24-7, definitely not sleeping well and on and on... you know the drill... But from our experience it goes through cycles.... Hoping it cycles upward realllly soon. As a caregiver, I don't know how I am going to NOT freak out. Doing most of the right things like mild antidepressant, good friends, support groups.... but my coping skills didn't prepare me for this....

HAVE YOU SEEN THAT BIRTHDAY CARD THAT SAYS...

AGE GRACEFULLY......

ONE ANTIDEPRESSANT AT A TIME!!!!

how true how true


Mon Feb 04, 2008 12:07 pm
Profile

Joined: Thu Sep 07, 2006 1:02 am
Posts: 14
Location: So Calif
Post 
Hi, I feel your pain.I have 2 teenage boys still at home and also live in So. Cal. My husband was dx with LBD at the age of 56 (3 yrs ago) but we both knew something was wrong for at least 4 or 5 years before that. We too had a hard time getting the proper dx because of his age. I started to feel like I was going crazy because none of the doctors were really listening to me. We finally were referred to UCSF. It was a break through and finally with doctors that understood. My husband has been declining pretty fast in the last 9 months. It is devastating to watch the love of my life go down like this. Very difficult on the whole family! There is a fantastic support group for LBD 1st Wed. of every month at UCI. I have learned more from this group than any doctor about what to expect next. Good luck and God bless you!
Shawna

_________________
Shawna
Caregiver for 59 year old Husband w/LBD


Mon Feb 04, 2008 9:56 pm
Profile

Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post hey Shawna from Cheryl in Nashville - husband 57 with LBD
Shawna, just this evening my husband accused me of trying to punish him. I told him he needed to go off the Exelon Patch and back on Aricept (the Dr. said that would be fine) because his symptoms are not improving with the Patch. Ron thought I was punishing him and taking him off his meds..... he is becoming a little paranoid... This is the gentlest, sweetest, most wonderful guy I have ever known!!!!! And now he is having trouble completing sentences.....


Mon Feb 04, 2008 10:05 pm
Profile

Joined: Thu Sep 07, 2006 1:02 am
Posts: 14
Location: So Calif
Post 
My husband is also the kindest, sweetest gentleman but this disease has changed him so much. He went through a stage of anger outbursts, accusations, major denial. Now he cannot complete sentences or understand simple commands. I always tried to tell myself that it is not him trying to make me mad or upset... it is the DISEASE but still heartbreaking.
S

_________________
Shawna
Caregiver for 59 year old Husband w/LBD


Mon Feb 04, 2008 10:38 pm
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post youngest age
To all the ladies,  (and men) I always disliked the word caregiver, but have come to realize our loved ones could not do without our care.  My husband was DX 4 yrs ago and it went on from there.  Whenever anyone asks how Frank is doing?, the reply is "today" he's doing OK, we'll keep our finger crossed for tomorrow.  He is on the max of Exelon and Zyprexa and since he has been on it, approx 9 weeks, he's been pretty good except for a day or two here and there.  He tells people all the meds aren't doing a thing.  When I think back over the last 10-12 months, this, "toay" is like heaven.  Frank is 67 and our girls are married adults with children and ALL understand, and offer constant support.  Finding the right combination of meds is major, I'm sure at some point we'll be back to square one, starting with other meds.  My hearts go out to all of you, be sure you take care of YOURSELF, it sounds like it could be a long hall.  Gerry


Tue Feb 05, 2008 10:26 am
Profile

Joined: Mon Dec 31, 2007 2:40 pm
Posts: 36
Post Support Group?
sdakides wrote:
! There is a fantastic support group for LBD 1st Wed. of every month at UCI. I have learned more from this group than any doctor about what to expect next. Good luck and God bless you!
Shawna


What/Where is UCI? Is it a support group for caregivers or patients or both?


Thu Feb 07, 2008 12:08 pm
Profile

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Post 
UCI is the University of California at Irvine, which is in Orange County in southern CA.

_________________
Renata (and Jerome-in-Heaven)


Sat Feb 09, 2008 5:24 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 21 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr