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
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?