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

@raebaby Welcome to Mayo Connect. All the members here are either patients or caregivers who share information, resources, and helpful tips. Your presence in this group will be so valuable! @larryh123 who started this group, also has LBD. I know he’ll be glad to welcome you.
How have you been doing since your husband’s death?

Hello:
Thanks for sharing your insight on the red light therapy. I’m going to do some research to see if it might help me.
I am a LBD with Parkinsonism patient always looking for great ideas to help us out.

Appreciate you sharing your story. I know as a patient, we truly appreciate everything you do for us.
We appreciate your sacrifice and - well - putting up with us.

Your insight will be helpful for all of us - patients and caregivers.

Peace
Larry H

For anyone wishing to review research about photobiomodulation, here are some relevant links. The studies to date have been done with small sample sizes.
- Significant Improvement in Cognition in Mild to Moderately Severe Dementia Cases Treated with Transcranial Plus Intranasal Photobiomodulation: Case Series Report 2017 https://www.liebertpub.com/doi/full/10.1089/pho.2016.4227
- Improvements in clinical signs of Parkinson’s disease using photobiomodulation: A prospective proof-of-concept study 2021 https://www.vielight.com/wp-content/uploads/2021/06/Improvements-in-clinical-signs-of-Parkinsons-using-Photobiomodulation.pdf
- https://www.vielight.com/research

Hi Raebaby, I add my welcome. What are some tips that you would offer to others about sun-downing and hallucinations?

For hallucinations and psychosis, w finally obtained medication from his motion specialist. His regular neurologist was a hateful man. If you run into a terrible neurologist, replace him or her as soon as you can. Fight for a new one, even if your insurance doesn't cover one at your medical center. Fight! Fight! Fight!

Thanks Colleen!!! You saved me some time.
Peace Larry H

How I handled sun downing.. My husband started "escaping at night. The doctor suggested we lock him in his room, but he climbed out the window. Once, we were totally puzzled how he got out, and learned that the cat who could operate levered doors did it. You have to feel some humor in these awful situations.

The last straw was when he left in the middle of the night (we are on 22 wooded acres) and I found him when I woke up at 9am laying in a field, face down with hypothermia. An ambulance took him to the emergency room and he was back home later that day.
All on my own, I reasoned that if his body clock fouled him up at dusk, I would give him 10 mg. of melatonin at 4pm. Then another 10 mg of melatonin around 9-10 pm. It ended the sun downing. The only time there was ever a foul up was when my son was watching him and didn't give him his first dose until 6pm.

Another tip. If your Parkinson's loved one faces surgery, be sure they their dose of Rytary, or what ever else they take ,to balance out the awful symptoms, before the surgery and to prepare that they might wake up in a totally off- the -wall state. I had to calm him down as he was coming out of the anesthesia (and the recovery room nurses seemed like they had never encountered something like it before.) Then we had to wait for more Rytary to come from the pharmacy which seemed to take forever.

You are so right. Many folks will go to a dr and then dont question them. There is always room for a 2nd opinion OR an informed opinion.
FIGHT FIGHT FIGHT
Patients - fight for yourself
Caregivers - fight for us
We like to watch medical mystery shows. My wife thinks i would be good for an episode or 2 🙂
It always irks me when a dr says I dont know, send you home to get worse. A doc that tells a patient i dont know and leaves it at that has given up.
That is a bad doc to have.
For every bad doc there are several other good ones. Finding one that understands and treats your illness, one that is a partner in your care - that is a good one.
I have found that a good starting point is lbda.org
Also - I haven’t used this as I have been a Mayo patient from the beginnings of problems - but it might give some ideas of docs.
https://lewybodyresourcecenter.org/doctors-other-states-countries/
Take a few minutes to explore the above site. Lots of good info. Start from the home page and check all of the sections. There are a lot of hidden jams in the info. T

Peace
Larry H

I first learned about the Veilight 810 through AARP magazine. They discussed how it helped people with Alzheimer's.
I am recovering from chemotherapy for breast cancer, and I now use it, thinking perhaps it will help me cognitively. Chemo really messed with me.

If you buy one, get it directly from the company and they will let you try it for 6 months. If it doesn't help you they will give you your money back less 20 percent.

I'm a former RN and love sleuthing about for answers and finding answers to my own problems on this site. It's better than any other support group I have been part of.

My husband's doctor was cruel. He actually made me cry with anger and compassion for my husband who was so helpless. The doctor said he couldn't help him and no one else would want to deal with him either. He turned out to be wrong. The motion specialist knew right away what to do to help him. He was experiencing "wearing off" and he was given proper medication for it. As an aside, another patient of his in our support group found out he was playing in a band at a local bar and she said she'd like to go by and bomb the bar!