Living with Parkinson's Disease - Meet others & come say hi

Hi @hopeful33250 @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth:

I'd like to invite you to the new group on Connect dedicated to discussions about Parkinson's disease. It's a space where we can ask questions, share tips and learn about living with Parkinson's from each other. Whether you live with Parkinson's or care for someone with Parkinson's, please join us. Pull up a chair and tell us a bit about yourself.

My husband is a Vietnam Vet. He was in the Air Force and flew as loadmaster on C130's and was exposed to Agent Orange. He had a heart attack in September 2023 and it has been downhill since then. He had a balloon and a stent. For years, he has had balance problems and a tremor. He is blind in one eye and poor vision in the other eye from macular degeneration. He is depressed, anxious and last week he got Covid, which has knocked him off is feet with fatigue, confusion and now has a hard time getting off the bed. He was hospitalized in the VA hospital in February 2024. He walked in with a white cane and was wheeled out two weeks later, being discharged to a group home. I found out he was being neglected and verbally abused by one of the caregivers so I moved him to a memory care facility that is better able to deal with his physical needs. He has been diagnosed with MCI (Mild Cognitive Impairment). He now has incontinence at night because he was afraid to ask the caretake to use the urinal or go to the bathroom. He is in Depends in the daytime and a diaper at night. They use chucks on the bed, just in case. I find it very hard to visit him and many times leave in tears because his downhill spiral gets to me as there is nothing I can do to help him. I was going daily, but need my self care, so now take off 1 - 2 days per week. It is so hard watching a loved one go downhill and there is nothing I can do to stop it. I have turned him over to God. There is a poem that has helped me called: Footsteps in the Sand. There are times I need to be carried by God because I just can't do it. I have read some of the posts and can identify. This is a tough road supporting someone with PD.

Hola a todas las personas que tienen este padecimiento a mi me detectaron parkindon hsce un año hasta ahora me va bien con carvidopa levodopa pero este medicamento me da mucho sueño y decaimiento. A alguna otra persona le pasa lo mismo?

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

I went to the Neurologist for the first time last week to discuss my symptoms. The doctor wants me to submit to a series of tests: EEG, CT Scan and a Datscan (which seems really long and invasive, and in any case is expensive). My question is: What is the point?? Isn't the treatment for a new Parkinson's patient somewhat standard? I would rather be treated than tested.