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.

teacher502 | @teacher502 | Jul 20, 2021

Oh my....I had not figured out "the mask" part until now. I am grateful for the many facets of knowledge gained from this forum.

My husband has reached a point where he will go very few places without me because he is worried that his words will not "come out" and no one else seems to be able to know what he is saying. If I can't figure out the words, he will just say, "Give me a minute," but usually it does not come back. I am finding that often I cannot hear him due to the soft voice and he really cannot say it louder...I have to be quick-witted and reply with a funny comment so we can both laugh but sometimes it is sad or frustrating.... He does wear hearing aids, and I have been given a lapel mike to wear on my shirt. The microphone only goes to his hearing aides, and I can speak low enough only to him that others cannot hear me. (Not a good idea to go to the bathroom when wearing it). This has given both of us a lot of peace and giggles. If we go to a doctor or to lunch with a friend or family, I just give the microphone to the doctor or main "talker" and he feels much better about the situation. At least he can feel as if he is a part of things a bit more in social situations.

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lizzier | @lizzier | Jul 20, 2021

Love your bathroom humor quip. isn't it interesting the means we will go thru to be connected to the people who we love, and how the humor carries us through the rough times. My sister had a stroke, and when she would talk on the pone to my other sister. and she couldn't figure out how to find her words, she would say "I'll tell you tomorrow.". That was her way of saying she couldn't speak any further. The messages are there. We just have to listen for them. At first when my husband was losing memory I would find myself doing the eye roll. then I realized he had a problem, and he was tested. I began to look for answers, and I found many, and it is a sad journey, but humor always saves the day. Have a good one.

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catrinarawson | @catrinarawson | Jul 21, 2021
In reply to @larryh123 "Totally identify " A lot of people or noise makes me crazy. And if something goes..." + (show)
@larryh123

Totally identify " A lot of people or noise makes me crazy. And if something goes against the plan during the day, I go from zero to 60- agitated. Ive never been like that. The smallest of things aggravate me."
Have you seen any of the communication tips I have posted?

I think I am going to start a new discussion on Communication Challenges with LBD.
Do you think that would be a good idea?

Peace
Larry H

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Hi Larry
Communication Challenges would be a great idea. My recently diagnosed husband has always had a low voice, but now it is very soft and he has trouble projecting. We would both really like to be in conversations about communication.
Thank you for everything you share with this group.
CR

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 21, 2021
In reply to @catrinarawson "Hi Larry Communication Challenges would be a great idea. My recently diagnosed husband has always had..." + (show)
@catrinarawson

Hi Larry
Communication Challenges would be a great idea. My recently diagnosed husband has always had a low voice, but now it is very soft and he has trouble projecting. We would both really like to be in conversations about communication.
Thank you for everything you share with this group.
CR

Jump to this post

@catrinarawson Have you heard of super ear from amazon? It’s a hearing device that YOU would wear and it would amplify your husbands voice. We got one for y mother and it worked great! But she wouldn’t use it. 🙁
It’s SE5000 super ear and is from amazon. It’s worth a try! Be sure to let me know how you like it

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 25, 2021
In reply to @dgriffith24 "My hallucinations are auditory. I hear a radio station playing music that is not quite tuned..." + (show)
@dgriffith24

My hallucinations are auditory. I hear a radio station playing music that is not quite tuned in when I try to sleep at night. I have a few visual hallucinations like a mouse or a shadowy figure. They don’t frighten me, but they do annoy me. I am by nature a positive outgoing person. That is changing rapidly. A lot of people or noise makes me crazy. And if something goes against the plan during the day, I go from zero to 60- agitated. Ive never been like that. The smallest of things aggravate me. My husband is trying hard to understand, but heck, I can’t understand why it happens. My smell is affected but not totally gone yet but I forget to eat daily. I don’t know why I do t think about it until supper time and I haven’t eaten all day. My memory long term is pretty good, but short term is awful. My Aracept has been the drug that I notice the most improvement from. My sediment I’m not sure about. I guess it helps, because I can sure tell when I miss a dose.
I have a twitch in my right pointer finger, and my right side is more affected.
I have been an Administrative Assistant for 42 years. I worked for an attorney, a bank President snd the local school district. I have handled many financial statements snd millions of dollars, and now I can’t do simple math. I went to bath snd body snd I could not figure out how many to get when I needed 4 and it was buy 2 get one free. The clerk had to help me. I was so embarrassed
On the outside, most days you might not think anything is wrong if you don’t look really close
Since you’re diagnosis, how Whi has the disease progressed? I worry because if you Google it, the diagnosis is grim

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@dgriffiths, I'm glad you started this discussion both for people diagnosed with LBD and caregivers. I'd also like to invite @estpark2 to join the conversation.

I added the discussion to the Brain & Nervous System group and the Parkinson's group too. This is such a great conversation for all.

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amesmassage | @amesmassage | Jul 25, 2021

I have all those symptoms also, but the Aricept helped some. Then i srarted BRAIN HEALTHY protocols of:
Coconut Milk (canned in homemade protein shakes), DARK green salads with walnuts or sliced almonds, avocados, and brain games to keep my mind stimulated.
My neuro-cognitive test (3-hr. one) scores have improved for past 2 yrs., and my drooling has DECREASED dramatically, and ALL my cognitive functions have IMPROVED GREATLY!

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amesmassage | @amesmassage | Jul 26, 2021

Please go to the Lewy Body Association website for WONDERFUL information or contact them directly as they havecVERY FRIENDLY, HELPFUL people!
I would also suggest you get into a couple different SUPPORT GROUPS that meet online such as:
https://www.facebook.com/groups/1782340522035405/?ref=share

https://www.lbda.org/
800-539-9767

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Larry | @larryh123 | Jul 26, 2021
In reply to @catrinarawson "Hi Larry Communication Challenges would be a great idea. My recently diagnosed husband has always had..." + (show)
@catrinarawson

Hi Larry
Communication Challenges would be a great idea. My recently diagnosed husband has always had a low voice, but now it is very soft and he has trouble projecting. We would both really like to be in conversations about communication.
Thank you for everything you share with this group.
CR

Jump to this post

Hello:
Here is the new discussion about Communicating Challenges With Lewy.
https://connect.mayoclinic.org/discussion/communicating-challenges-with-lewy/

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raebaby | @raebaby | Aug 6, 2021

My husband died with Parkinson's in February of 2019. We dealt with lots of problems about 3 years before he died. I found one item that helped his dementia a lot. It was a red light therapy devise called the Vielight 810. It really improved his mind and body. He was able to play chess again.
I also learned how to deal with his "sun downing", psychosis and hallucinations. If I can be of help to anyone. I know how VERY hard it was being a caregiver. Sometimes I thought it would cause me to have a stroke. We were married for 58 years.

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