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 group.

Welcome to Connect @dgriffith24 We’re a group of people with different diagnoses who try to help each other thru our shared medical experiences. We are not odors, though, so we cannot diagnose or prescribe medications. Just wait a bit, and other members will come into this discussion.
I, personally, don’t know much bout LBD except what I’ve read here. I have an autoimmune disease that impacted my brain. I had to go to a university medical center in a large city near me. The local doctors just didn’t know what they were dealing with. Do you have a medical center that’s not too far?

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Hello:
You are not alone. I also have the diagnosis of LBD with Parkinsonism. I am 60 and went on disability when I was 56. Now am 60. I just couldn’t concentrate, multitask, follow directions or think outside of the box.
Finding a good doc is a big challenge. Many have not heard of it. If they have they dont know much about it. So they ignore that as a possibility.
I personally have been blessed with my neurologists at Mayo here in FL.
Not sure if you have checked
LBDA.org

Here is a site for a LBD Center in Chicago. They also have lists of other docs
https://www.rush.edu/services/lewy-body-dementia-care
Both great sources of information.

I will say YES to all of what you are experiencing.
The drooling is definitely a nuisance. My neurologist had 2 recommendations. There is a med but it can have problems with Aricept and has some side effects that might cause more stiffness. So that was out. Next suggestion – Botox.
I might do that in the future.

I also have a little slurring along with a low volume voice.Sometimes I am slow to get words from brain to mouth which can have a slurring effect.

And the fun stiffness and body pain. The sinemet should help with the stiffness. You mentioned being on the low dose. When I stopped sinemet I was back to the 50-200 strength. For me – after a few years the sinemet was not doing much and was causing a little more confusion. So discontinued that.

Exercise is a very important part of our treatment. My balance isn’t great and I do fall occasionally. I do chair yoga and when I’m feeling froggy a little tai chi. Also – walking is a good way to get exercise. Even if it is a short distance doing laps in the house it is exercise.

Along with exercise is a good stretching routine. When I really started getting serious about it a couple of years ago – I really noticed a difference. My walking improved very quickly. I have more problems on my right side. That ankle doesnt like too bund – stays flat so I dont walk properly. That’s where my falls come from. Stretching helps a lot. I do stretches 4-5 times a day and before I venture out with my wife. In the morning stretching is a must for me.

Do you find your stiffness is worse in the morning?

On the pain aspect – I know of several folks that do have generalized pain along with this.
In my case – I have the pain – but also have Myotonic Muscular Dystrophy II which causes pain in my joints.

Treatment for pain can be tricky. It isn’t just the Parkinsonism. The LBD has its own challenges with med side effects.
I get relief from many of the symptoms with alternative meds.
You should get with a good osteopath to help with some of that.

Do you still drive? Just curious – my reaction times, getting lost and special awareness arent what they used to be.

Hopefully the link I gave above will help lead you to a doc in your area to get answers and help.

I’m happy to chat more when you chime in.

Peace
Larry H

REPLY
@becsbuddy

Welcome to Connect @dgriffith24 We’re a group of people with different diagnoses who try to help each other thru our shared medical experiences. We are not odors, though, so we cannot diagnose or prescribe medications. Just wait a bit, and other members will come into this discussion.
I, personally, don’t know much bout LBD except what I’ve read here. I have an autoimmune disease that impacted my brain. I had to go to a university medical center in a large city near me. The local doctors just didn’t know what they were dealing with. Do you have a medical center that’s not too far?

Jump to this post

Yes. I live 2 hours from St Louis and my doctor at Mayo has referred me to a new neurologist there. I go the 23rd of August. I am also having difficulty with orthostatic blood pressure. It causes me to black out when I stand.

REPLY
@larryh123

Hello:
You are not alone. I also have the diagnosis of LBD with Parkinsonism. I am 60 and went on disability when I was 56. Now am 60. I just couldn’t concentrate, multitask, follow directions or think outside of the box.
Finding a good doc is a big challenge. Many have not heard of it. If they have they dont know much about it. So they ignore that as a possibility.
I personally have been blessed with my neurologists at Mayo here in FL.
Not sure if you have checked
LBDA.org

Here is a site for a LBD Center in Chicago. They also have lists of other docs
https://www.rush.edu/services/lewy-body-dementia-care
Both great sources of information.

I will say YES to all of what you are experiencing.
The drooling is definitely a nuisance. My neurologist had 2 recommendations. There is a med but it can have problems with Aricept and has some side effects that might cause more stiffness. So that was out. Next suggestion – Botox.
I might do that in the future.

I also have a little slurring along with a low volume voice.Sometimes I am slow to get words from brain to mouth which can have a slurring effect.

And the fun stiffness and body pain. The sinemet should help with the stiffness. You mentioned being on the low dose. When I stopped sinemet I was back to the 50-200 strength. For me – after a few years the sinemet was not doing much and was causing a little more confusion. So discontinued that.

Exercise is a very important part of our treatment. My balance isn’t great and I do fall occasionally. I do chair yoga and when I’m feeling froggy a little tai chi. Also – walking is a good way to get exercise. Even if it is a short distance doing laps in the house it is exercise.

Along with exercise is a good stretching routine. When I really started getting serious about it a couple of years ago – I really noticed a difference. My walking improved very quickly. I have more problems on my right side. That ankle doesnt like too bund – stays flat so I dont walk properly. That’s where my falls come from. Stretching helps a lot. I do stretches 4-5 times a day and before I venture out with my wife. In the morning stretching is a must for me.

Do you find your stiffness is worse in the morning?

On the pain aspect – I know of several folks that do have generalized pain along with this.
In my case – I have the pain – but also have Myotonic Muscular Dystrophy II which causes pain in my joints.

Treatment for pain can be tricky. It isn’t just the Parkinsonism. The LBD has its own challenges with med side effects.
I get relief from many of the symptoms with alternative meds.
You should get with a good osteopath to help with some of that.

Do you still drive? Just curious – my reaction times, getting lost and special awareness arent what they used to be.

Hopefully the link I gave above will help lead you to a doc in your area to get answers and help.

I’m happy to chat more when you chime in.

Peace
Larry H

Jump to this post

Thank you Larry H. Just hearing from someone else with the same things going on let’s me know I’m not going crazy. I used to love to walk, but the pain and low blood pressure keep me from a lot of things. I used to walk 5 miles a day. I do drive but only in town. Anything outside of the norm is just overwhelming and I get turned around and confused. I don’t have bad tremors all of the time, but I get shaky and sometimes I have internal tremors at night. I was diagnosed at Mayo in Rochester which is about 9 hours North of us. If I have to, I will go back there for follow up. My current neurologist’s staff had to ask me how to spell Lewey Body so I knew I was in trouble. I have good days where I think I’m fine, then bam! I get a couple three bad days in a row snd I’m down for the count. I will try the homapathic route for my pain. I’m up for anything. Do you suffer from your blood pressure bottoming out when you stand?

REPLY

"Anything outside of the norm is just overwhelming and I get turned around and confused.". Man cn I denitrify with that!!! I am getting ver intolerant to change. I also get overwhelmed in social situations – especially when there is a lot o noise to filer though. Over load city.

You will have days where things are good – sometimes weeks then back to this.

My tremors aren't as pronounced as many see. My is more of an intention tremor. I do have the pill rolling deal most of the time.

I don't have the blood pressure drop when getting up – but am tested for it at every neurological visit – so it is a part of it.

As things go along – don't focus on what you could do – focus on wha you can do. You can still drive I can't. I can walk ok – you are more limited.
We all with have stuff we can do.

Have you had any mood swings or hallucinations?
Halluciations for me are voices, doorbells and visual spiders birds and the occasional creepy creaking door opening. All of which I know aren't real and still know that. While the visual is. happening it seems real but when I think about it – it was way too vivid and detailed to have been real.

My sense of smells pretty much gone which makes taste very low.
Had any problems with that?

Peace
Larry H

REPLY

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

REPLY
@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

Jump to this post

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

REPLY

Please do start a new Communication tip thread. My husband has DLB/Parkinsonism and communication is extremely difficult at times. His voice is so soft and it sounds like he slurs/mumbles words with the beginning of a statement being stronger than the second half. I am frequently moving into closer proximity and asking him to repeat what he is saying. This is frustrating for both of us. Thank you for sharing your knowledge and experience, Larry H.

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Will get started on it. I have the same issues with low volume and starting real low then going a little louder then real low again. My lovely wife can only hear part of the middle part of what I am saying. Repeating isn't fun for wither of us. we have learned to try and get her attention when I am saying something. then it helps me a bit to know to speak up.It also lets her see my lips and know I am saying something so she would know if she missed something. It also gives me a little feedback as if she is hearing me. I'd say she cn look at my facial expressions – but – many of us have "the mask" where we don't show much emotion on our faces. Just kind of blah looking – so that adds to it as well.
When we get the new communication thread going – we can exchange ideas from patients and caregivers, docs to get a wide sprecrum of experiences and ideas for working around she of the comm issues.
Stay tuned!!

Peace
Larry H

REPLY

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.

REPLY

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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