I was recently diagnosed with LBD with Parkinsonism: Any advice?

I agree @amesmassage. It is a big help. How much medicare pays for OT, PT, and speech therapy is dependent upon the type of setting. Medicare pays 80% for outpatient therapy verses 100% for all therapies and nursing through home care services including a home care medical social worker.

With covid being high again, it probably covers in-home services again as it did last year!!!!

@amesmassage nice thought! Medicare has been covering home care services for many years prior to covid infections.

What is LBD? I’ve just been told that I have frontal lobar deterioration…not Parkinson’s!!! I had never heard of it, but apparently it’s worse than P! Anyone familiar with it???

Hi Psvantx, LBD stands for Lewy Body Dementia.

It sounds like you have been diagnosed with Frontotemporal dementia (FTD). Is that right?

Hello_ I am an LBD patient with atypical Parkinson’s. I as well started off with a diagnosis of PD. As time went on other things started cropping up. after neuropsychology testing and meeting with a few non movement neurologists I was changed to LBD. I still have Parkinson’s like symptoms. So they call it atypical Parkinsonism. “Normal” Parkinson’s is idiopathic.

All of this can b.e very confusing _ especially if your doc just leaves you’d with a diagnosis without anything else to go on.

Yes _ LDB can have an effects on the frontal lobe. This has been noted in my tests.
LBD can be confused with FTD by docs that aren’t real experienced.

Other good reading.
https://pubmed.ncbi.nlm.nih.gov/18797258/

One of the best places to start learning more is the Lewy Body Dementia Association.

My advice Take a deep breath. Take time to learn what you can
From REPUTABLE sources.
Write down your questions. Take those questions to your appointments and make sure you get them answered before the appointment is over.
Also keep a journal to document weird Things. Like getting lost “one that got my attention”. forgetting, mood swings, stiffness, muscle cramps / spasms, grooming / hygiene , etc. You get the idea. All of these things are a great way to let the doc know what you are seeing as well as to help you track things.

My neurology at Mayo has been great. Always take the time to answer my questions _ and there have been many over years _ even outside of appointmenTs via the portal.

Peace
Larry H.

Hello - My story is strikingly similar to what you mention. I as well am a LBD patient with atypical Parkinsonism. Started as a diagnosis as PD. Like you, Aricept is ok and not causing other problems.
What you mention about the slurring, slobbering (Sialorrhea) - there is a medical term for everything :-), along with the stiffness and pain - all things that I experience as well. Mood, communication and memory problems are also a challenge

I went on disability 4 years ago and now am 60.

I have tried many things over the years. Sinemet helped a little with the stiffness and tremors but not substantially.
For the drooling - my neurologist mentioned Botox as a way to help with that. I didn't want to go that route.
I had tried many drugs / combination of drugs for pain, stiffness, depression, mood swings and all of the other fun stuff that goes with this.
Out of the ones I could tolerate none of them gave any substantial relief. Others made me like a zombie and totally out of it and not making any sense. Not great or a LBD patient.

There also are a list of several drugs that you should not take when you have LBD or PD. My Mayo neurological team gave this to me a while back. They recommended I put those meds on my list of medication allergies so they won't give it if Im unable to communicate.

I have found relief and my neurologists and neuropsychologist cannot fully endorse it but DO NOT discourage it. Many of their patients have sought and found this to give relief. After all we arent searching for a magic pill to cure - rather search for ways to make our lives more palatable.

You can explore Medical Marijuana as an alternative to the pills that dont work. High CBD content products are great. Not like the stuff you get OTC though.

You must educate yourself if that is a route you want to pursue to ensure you will get a product that will help with your particular ailment.

This is a legitimate way to find relief. You see a Dr that issis educated on MMJ and would recommend you for the program after evaluating your conditions. This is not something you should undertake on your own. Having your MMJ Dr to work with you is very important. You are under his/her care for the treatment. You followup regularly - just like your regular Docs.

Illinois has a MMJ program.

For instance - for me - I am able to do a good stretching routine because of the pain relief. My stiffness is better because of the muscle relaxation. Tremors are hardly noticeable. Speech is clearer and thoughts can be conveyed better. Mood is better - mood swings are under control. Sleep is great (was on 2 meds for that previously). Depression (common with LBD) is under control.

Should you or anyone else have questions on this let me know via PM (I dont want to get into trouble by giving more info here). I go to Mayo for all of my neurological care - hint - that is where the neurologists didn't discourage this in my case. One was intrigued to meet folks that are having good outcomes.

Finding a doc familiar with LBD can be challenging. Not a lot of neurologists work on the non-motor side of the house. Many have "heard of it" but that's about it. They dont know who to send you to.

I would suggest going to the Lewy body Association website. There is a great amount of knowledge and info to help and learn from.

Web Address
LBDA.org

You are not alone on this journey. Things will change. As time goes by it will be easy to think of the things you cant do anymore.You have to adjust your mindset to focus on the things you CAN do. Some of them are things that others cannot do. I can say something then a minute later not remember anything about the conversation. Not everyone can do that!!! 🙂 It took me almost an hour to type this - not everyone can take that long 🙂 Not everyone can ramble on like this where it might take others a couple of sentences.

Lastly as hard as it can be - keep a sense of humor. it comes in handy.

Glad to help in anyway I can. This is a journey - dont embark on it by yourself. You are not alone.

Peace
Larry H.

My husband is with LBD and used to have a soft voice, almost inaudible. Chanting exercise for 12 minutes a day seems to help with this and now his voice projection is quite good. One will see the difference within in a week or two. Singing and reading out loud help, too. I think these exercise may help with other aspects (swallowing, drooling, facial expression and blood circulation in the brain) by strengthening facial muscles and vocal cords. We use Kirtan Kriya by The Light House and Nirinjan Kaur (short) versions for the exercise.

It was an unexpected, marvelous benefit. It's a great exercise to do together with other family members. Try and see.

Ahn

Welcome @jecheon. What a simple but effective way to strengthen the voice.

I noticed that you wished to post links to 2 YouTube videos. You will be able to add links to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Are these the videos you wished to post?

Thank-you so much, Larry, for your explanation and advice….I really appreciate it! Wishing you the best’