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.

pcacare | @pcacare | May 7, 2022

In reply to @hopeful33250 "Hello @pcacare and welcome to Mayo Clinic Connect. Your husband's health situation does sound complicated and..." + (show)

Thank you, I wish the medical field could halt the Alzheimer's progression.

Teresa, Volunteer Mentor | @hopeful33250 | May 8, 2022

In reply to @pcacare "Thank you, I wish the medical field could halt the Alzheimer's progression." + (show)

That is very understandable, @pcacare. You might find some support in the Caregiver discussion groups. Here is a link to a discussion group that might be helpful to you.
https://connect.mayoclinic.org/group/caregivers/
I would encourage you to look through the many conversation groups. I believe there is one devoted to caregivers who are dealing with dementia/Alzheimer's.

Do you have any help caring for your husband or are you responsible for all of his needs?

Teresa, Volunteer Mentor | @hopeful33250 | May 14, 2022

In reply to @psvantx "After exhibiting symptoms of Parkinson’s (drooling, falling, etc.) that my mom and bro had, I began..." + (show)

Hello @psvantx

I can hear the relief in your words. It is good to have a plan to relieve your symptoms! While this hasn't happened to me personally, I have known of people who were originally diagnosed with Parkinson's and later diagnosed with the fluid on the brain. If a shunt is implanted you should feel much better.

How long have you had these symptoms? What type of test finally diagnosed the fluid on the brain?

garyD | @gary1316 | May 14, 2022

I suffer from each of those symptoms but have not been medicated to alleviate any of them with the pain and stiffness being the worse. I suppose that for now the saving grace is that they are intermittent lasting 7-9 days at a time. At least for now I can usually count on a little relief.

psvantx | @psvantx | May 17, 2022

In reply to @hopeful33250 "Hello @psvantx I can hear the relief in your words. It is good to have a..." + (show)

Gradually increased over last 3 years! Have a spinal lumbar puncture scheduled next week!

Teresa, Volunteer Mentor | @hopeful33250 | May 18, 2022

In reply to @gary1316 "I suffer from each of those symptoms but have not been medicated to alleviate any of..." + (show)

Hello @gary1316

I am sorry to hear of your symptoms. I agree that stiffness is the worst. About your symptoms, you say that you "have not been medicated to alleviate any of them..." I'm just wondering if PD medications were suggested for you, or if you prefer not to take them for some reason?

There are physical therapists that specialize in Parkinson's. Has physical therapy been offered to you?

Exercise is a great way to help Parkinson's patients. Do you have an exercise routine in place?

Colleen Young, Connect Director | @colleenyoung | May 29, 2022

In reply to @psvantx "Gradually increased over last 3 years! Have a spinal lumbar puncture scheduled next week!" + (show)

@psvantx how did the spinal lumbar puncture go? How are you doing?

sakoziar | @sakoziar | Jul 1, 2022

I am new to this site. My husband is in the preliminary evaluation stage but the neurologist is pretty certain it is LBD. He has many of the symptoms you have described. If he is definitely diagnosed with this disease, is it possible to request a physician with this specialty at Mayo instead of the neurologist at Mayo that he currently has. I want the best I can find for him.

janet7 | @janet7 | Jul 2, 2022

In reply to @sakoziar "I am new to this site. My husband is in the preliminary evaluation stage but the..." + (show)

I would think you could get a referral from your Primary Doctor to go to another Neurologist. I would find out if your insurance will accept the referral.