New Expert Blog: Dementia Hub & Lewy Body Event

New on Mayo Clinic Connect
Dementia Hub – a new blog written by Mayo Clinic experts with information, resources, and support for people living with dementia, as well as the caregivers, families, and friends who support them.

– Dementia Hub: https://connect.mayoclinic.org/blog/dementia-hub/

Follow the blog to get notifications when new blog posts are published.

Interested in more discussions like this? Go to the Caregivers: Dementia group.

@arlenephoto @scampbell0163 @adv @sarah49 @jaybergerpt @virginianaeve @dianajane @tunes @providence1960 @debbraw @hopeful33250 @IndianaScott
I wanted to make sure that you were all aware of this new blog and in particular to the online event (free) hosted by Mayo Clinic on May 3.
– Lewy Body Dementia Knowledge & Support Summit https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

The summit organizers want to know what questions you'd like speakers to address during the summit. Post your responses here:
– Lewy Body Dementia – What are your questions? https://connect.mayoclinic.org/blog/dementia-hub/newsfeed-post/lewy-body-dementia-what-are-your-questions/

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Thanks @colleenyoung – I wasn't aware of that Blog. I'm following it now. I appreciate you pointing it out.

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@colleenyoung

@arlenephoto @scampbell0163 @adv @sarah49 @jaybergerpt @virginianaeve @dianajane @tunes @providence1960 @debbraw @hopeful33250 @IndianaScott
I wanted to make sure that you were all aware of this new blog and in particular to the online event (free) hosted by Mayo Clinic on May 3.
– Lewy Body Dementia Knowledge & Support Summit https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

The summit organizers want to know what questions you'd like speakers to address during the summit. Post your responses here:
– Lewy Body Dementia – What are your questions? https://connect.mayoclinic.org/blog/dementia-hub/newsfeed-post/lewy-body-dementia-what-are-your-questions/

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@colleenyoung Thank you for including me. Yes I have been aware. My dear husband passed away on Jan3rd this year. I'm still in limbo. But I do read all Mayo connect. Perhaps I will have some worthwhile comments. Hugs to all.

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@colleenyoung

@arlenephoto @scampbell0163 @adv @sarah49 @jaybergerpt @virginianaeve @dianajane @tunes @providence1960 @debbraw @hopeful33250 @IndianaScott
I wanted to make sure that you were all aware of this new blog and in particular to the online event (free) hosted by Mayo Clinic on May 3.
– Lewy Body Dementia Knowledge & Support Summit https://connect.mayoclinic.org/event/lewy-body-dementia-knowledge-support-summit/

The summit organizers want to know what questions you'd like speakers to address during the summit. Post your responses here:
– Lewy Body Dementia – What are your questions? https://connect.mayoclinic.org/blog/dementia-hub/newsfeed-post/lewy-body-dementia-what-are-your-questions/

Jump to this post

All my test results point to LBD and CJD.. But there are days that I still can't believe and or accept the diagnosis. How dide it happen… no cure.. just wait everyday for the bottom to fall out our lives..zi keep searching for new medical facilities that will see me to maybe find an error or something new to search out. If this is a rare disease (both) then one would think someplace would atleast give me the chance to be seen. ! to 1 1/2 years out is just unacceptable to me atleast. I would go to the ends of the earth to be seen. Day by day… no you cant do that.. you might fall.. you have to slow down.. and on and on and on.. Any medds out there that anyone has tried or that thier trying that might help change things? DAY BY DAY..

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@mountainsueh

All my test results point to LBD and CJD.. But there are days that I still can't believe and or accept the diagnosis. How dide it happen… no cure.. just wait everyday for the bottom to fall out our lives..zi keep searching for new medical facilities that will see me to maybe find an error or something new to search out. If this is a rare disease (both) then one would think someplace would atleast give me the chance to be seen. ! to 1 1/2 years out is just unacceptable to me atleast. I would go to the ends of the earth to be seen. Day by day… no you cant do that.. you might fall.. you have to slow down.. and on and on and on.. Any medds out there that anyone has tried or that thier trying that might help change things? DAY BY DAY..

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Hello:
I am a LBD patient along with atypical PArkinsonism and Mytonic Dystrophy 2.
Just hearing the word dementia is totally unappealing for anyone – especially those of us that are on the receiving end.

For the CJD – did they do any genetic testing? I believe it can have a family nature. For me – my kids have a 50% chance of having the MD2.

Have you looked at the Lewy Body Dementia Association website? Lots of great info and resources.
http://Www.lbda.org

There might be some info on locating specialists in your area.

I know that most neurologists arent up to speed on LBD. Basically most neurologists deal with movement disorders. There are neurologists that specialize in non-motor function disorders.

I have had to change my mindset. I am 60 and was 57 when diagnosed with LBD.
I had been seeing changes a while before that and things got worse over time. I stopped working, stopped Pastoring, driving, carrying my grandchildren, writing legibly to name a very few.

I sit back and think about all of the things I can still do. There might be more than you think as it can be overwhelming to think of stuff that isnt going to work anymore.

I’ve had to adapt my lifestyle to make things easier. For instance – to make sure I do everything i need to for hygiene we have made a checklist. For my meds we have gotten a pill box that has date time on the display, alarm goes off when it is time to take meds. The right box lights up. I have to hit a button after taking to turn off the alarm.

Yes – no cure. BUT there are things you can do to make life more palatable.
I try to take a holistic approach. Lots of body systems effected. I do chiropractic for the stooping posture – helps a lot with balance. I have a good stretching routine. When I don't do it I know the difference for sure. I dont take prescription drugs for pain, sleep or mood.

Do you find that you are sensitive to many meds? I have a terrible time when starting a new med. if there is a side effect I will develop it. We are too the point where I am not doing new prescription meds. Better alternatives out there.

I find that a good sense of humor can go a long way. When I say something stupid or forget what I was talking about – I can laugh or cry. I try to laugh.

My biggest help is my faith.

Peace
Larry H
Psalm 46

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