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?

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!

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.

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.

Great advice!!! Make sure that they know about all of the health issues. I was getting ready to have retinal re-attachment surgery. Dont take for granted they have all of the info. I had an experience where the info about LBD nd Parkinsonism or Muscular Dystrophy wasn’t in the anastelogists chart - I think those were important pieces of info. He was glad we told him as it made a difference on how they did some things.

You are so right about places not being ready or at least trained on how to handle us.
They pretty much let my wife come and deal with the anastesia aftermath if there is any. At least they listen and will follow what she says to help.

Peace
Larry H

I'm doing fine now, other than recovering from breast cancer chemo and radiation. It's been a tough 2 years. I'm still real interested in giving advise to Parkinson's patients as we struggled so hard to "fix" it.. My husband died of Sudden Death in Parkinson's. That's a real diagnosis. We went to a Super Bowl party and soon after, he just died. It wasn't a heart attack It was shocking.

We have a beautiful back yard with a pond that is only woods on the other side. We often get ducks. Some docs are like ducks - quacks!!! They missed compassion and bedside manor the day they taught in med school.
I’ve said it before - a doc that says he cant help nor anyone else can help has given up.

Thanks for your willingness to share with caregivers and us patients. We can all learn from each other.

Was it your husband that played in the band?
Just curious. I am a drummer. Try to play a little - but it i a challenge.

Peace
Larry H

Oh @raebaby you are one strong woman! You have certainly been through the wringer. What helped you through the tough times?