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Recent LBD with Parkinsonism diagnosis
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.
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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 Reaction@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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4 ReactionsThank you for your response. I will definitely follow up.
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1 ReactionThe husband of a friend was healthy in May , psrticipating in a cruise and a visit with grandkids in Europe. His health started to decline then and he was diagnosed with Parkinson's about 3 weeks ago The MRI also showed LBD. He further declined very rapidly and died on Monday morning. They are still waiting the results of the spinal tap. Any insight to offer. I did not think Parkinson's took a toll this quickly.
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3 ReactionsI’d be interested in what they find. He may have had another, more rapidly progressing Parkinsonism like MSA (which I have) or Lewy Bodies that have an Autonomic failure component. He may have died if his blood pressure dropped too much or his heart stopped. I am so saddened for his family. He is in a more peaceful place now.
Thank you. He began palliative care only on Sunday, I believe.
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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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3 ReactionsHello @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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2 Reactions6 months
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