1. < Parkinson's Disease

I was recently diagnosed with LBD with Parkinsonism: Any advice?

Posted by dgriffith24 @dgriffith24, Jul 17, 2021

I was diagnosed with LBD with Parkinsonisms last October. I live in rural Southern Illinois snd I am having a hard time finding a neurologist familiar with my diagnosis. I know no one with this disease. So my question is, does anyone else have trouble with slobbering, slurred speech and stiffness and body pain all over? Some days it is debilitating. My Aracept seems to be working well. I’m on the lowest dose of Carbadopa Levadopa. Is there anything that helps with these symptoms. I am 60 years old and had to go on disability my illness is so bad. Thank you for any help or any advice you can offer.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

sakoziar | @sakoziar | Jul 2, 2022
In reply to @hopeful33250 "Hello @sakoziar and welcome to Connect. I know the importance of finding the best doctor for..." + (show)
@hopeful33250

Hello @sakoziar and welcome to Connect. I know the importance of finding the best doctor for your husband's evaluation and treatment.

If I understand correctly, your husband is currently being seen at Mayo. Is that correct?

Please feel free to talk with the doctor who he is seeing to be sure that he/she is the best doctor for your husband's evaluation and treatment.

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I will check with our current dr. His specialty is autonomic dysfunction which is what we thought we were dealing with but found out it is most likely LBD. I know there are others who specialize in this area so I am hoping to make a change. I dont know how receptive Mayo is about this. Thanks for your message

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 2, 2022
In reply to @sakoziar "I will check with our current dr. His specialty is autonomic dysfunction which is what we..." + (show)
@sakoziar

I will check with our current dr. His specialty is autonomic dysfunction which is what we thought we were dealing with but found out it is most likely LBD. I know there are others who specialize in this area so I am hoping to make a change. I dont know how receptive Mayo is about this. Thanks for your message

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@sakoziar, Mayo Clinic will work with you to get the right specialists for your husband. I encourage you to submit the request with your current Mayo neurologist.

I also encourage you to follow the Dementia expert blog managed by Mayo Clinic Alzheimer's Disease Research Center in Rochester, MN. Click this link:
- Dementia Hub https://connect.mayoclinic.org/blog/dementia-hub/

Be sure to check out the Lewy Body Dementia Video Library https://connect.mayoclinic.org/blog/dementia-hub/tab/lbd-video-library/

This is a collection of videos from a Mayo Clinic event about LBD hosted for patients living with LBD and their care partners.

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1 reply
sakoziar | @sakoziar | Jul 2, 2022
In reply to @colleenyoung "@sakoziar, Mayo Clinic will work with you to get the right specialists for your husband. I..." + (show)
@colleenyoung

@sakoziar, Mayo Clinic will work with you to get the right specialists for your husband. I encourage you to submit the request with your current Mayo neurologist.

I also encourage you to follow the Dementia expert blog managed by Mayo Clinic Alzheimer's Disease Research Center in Rochester, MN. Click this link:
- Dementia Hub https://connect.mayoclinic.org/blog/dementia-hub/

Be sure to check out the Lewy Body Dementia Video Library https://connect.mayoclinic.org/blog/dementia-hub/tab/lbd-video-library/

This is a collection of videos from a Mayo Clinic event about LBD hosted for patients living with LBD and their care partners.

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Thank you for your response. I will definitely follow up.

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Mike Hovis | @hovism9 | May 25 2:53pm
In reply to @colleenyoung "Hi Psvantx, LBD stands for Lewy Body Dementia. It sounds like you have been diagnosed with..." + (show)
@colleenyoung

Hi Psvantx, LBD stands for Lewy Body Dementia.

It sounds like you have been diagnosed with Frontotemporal dementia (FTD). Is that right?

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yes

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 25 5:19pm
In reply to @hovism9 "yes" + (show)
@hovism9

yes

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@hovism9 Welcome to Mayo Clinic Connect. You may want to check out the Caregivers Discussion group. There are a number of people discussing LBD.
https://connect.mayoclinic.org/group/caregivers-dementia/. Members of the group are very helpful and encouraging.
How long have you had LBD? Do you receive any treatments?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 26 6:56am
In reply to @hovism9 "yes" + (show)
@hovism9

yes

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Hello @hovism9

I would like to join Becky, @becsbuddy, in welcoming you to Mayo Connect. In addition to the link, she provided here is some more information about LBD which you might find helpful.

--The Lewy Body Dementia Video Library https://connect.mayoclinic.org/blog/dementia-hub/tab/lbd-video-library/

This is a collection of videos from a Mayo Clinic event about LBD hosted for patients living with LBD and their care partners.

How long ago were you diagnoses with LBD, @hovism9?

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1 reply
Mike Hovis | @hovism9 | May 26 10:14am
In reply to @hopeful33250 "Hello @hovism9 I would like to join Becky, @becsbuddy, in welcoming you to Mayo Connect. In..." + (show)
@hopeful33250

Hello @hovism9

I would like to join Becky, @becsbuddy, in welcoming you to Mayo Connect. In addition to the link, she provided here is some more information about LBD which you might find helpful.

--The Lewy Body Dementia Video Library https://connect.mayoclinic.org/blog/dementia-hub/tab/lbd-video-library/

This is a collection of videos from a Mayo Clinic event about LBD hosted for patients living with LBD and their care partners.

How long ago were you diagnoses with LBD, @hovism9?

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6 months

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 26 10:23am
In reply to @hovism9 "6 months" + (show)
@hovism9

6 months

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Thanks for your response, @hovism9. So, this is a fairly new diagnosis for you.
Have you been prescribed any therapy yet, like PT or OT?

What is the most difficult part of having LBD at this time? What do you need help with?

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Mike Hovis | @hovism9 | May 26 10:28am

Diagnose also with FTD

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