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Lewy Body Dementia at age 51: Anyone else with early onset LBD?
Hello,
I have just joined the group. My husband was diagnosed with lbd 9 months ago at 51. I was wondering if anyone else has a loved one who was diagnosed at younger age than the norm. There seem to be unique issues, and I’ve been told it is usually faster progressing. Is anyone dealing with this?
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Hi Hitt, I want to add a belated welcome and appreciate your suggestion about joining a support group. Has your support group moved online at this time? What do you find most useful about connecting with others?
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2 ReactionsYes, I participate in 2 support groups, both via zoom, one originates in Cleveland, OH and the other in the Rochester NY area. What I like about support groups is the odd but good combination of anonymity and kindred spirits. I can ask for advise, confide problems and feel like I'm not alone in the journey all with the benefit of a non-judgmental and safe environment.
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5 ReactionsPlease add me to the caregiver group. nskinner5
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1 ReactionAlso please add me to cerebral artery problems group. nskinner5
@nskinner5, by commenting here, you are now following the Caregivers: Dementia group (https://connect.mayoclinic.org/group/caregivers-dementia/).
Are you caring for someone living with dementia?
Yes I am, for over 20 years. Beginning to
Think that it is a brain tumor or something
Else.
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1 ReactionAs a LBD patient I really think that support groups are fantastic. You have rerouted your life to help with us and you need n outlet. I dint like to get out much but i want my wife to go out with friends for an afternoon of thrift shopping (her therapy). I think a support group is a caregiver group for caregivers.
We appreciate what you do for us everyday - even if we cant or wont say it ourselves.
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5 ReactionsWow - that’s a long time!!! Thank you.
So was the diagnosis one of dementia? What flavor (I am a Lewy Body flavor)? My deal is the 5-8 year range after showing enough sign for diagnosis.However - the 20 year range is definitel not unheard of. I personally hope it is another form of dementia but all of the stuff we see is what LBD looks like.
Definitely look into other possibilities if you are doubting the original diagnosis. If you end up back with the same thing - no harm done. If something else is found - might lead to different treatment options.
Thanks again for taking care of your loved one for so many years. I cant imagine what that would be like. I can only tell you what it looks like from “in here”.
Peace
Larry H
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3 ReactionsElse, have any tests been done to see if a tumor may be present? Have you talked to your loved one's neurologist about this?
Yes, but they don’t seem interested.