My PD life is confusing - this is not easy. How do I accept it?

Most definitely not!!! When I had my 3rd Grand Mal seizure, my life changed. The seizure was different...very colorful, very loud, my brain was constantly screaming and buzzing, I had all kinds of visual things going on as well as waving arms, tapping feet....I didn't know when I was talking out loud versus to myself, kept yelling at everyone "Am I dead, now??" Since then my Parkinson's (I guess) has been more active, especially the psychological aspects of it. I was forced to find my own solutions, because I got no understanding in the hospital, no help, and then no help from any kind of doctor out of the hospital. You just have to live insane or fix it yourself, by trial and error. 3 times I was discharged from the hospital even tho I still had a screaming, loud brain, no ability to concentrate, and my legs were still dancing by themselves.
No help. Just frustration, which I guess is my primary complaint, one year later.

Congratulations on the progress you have made, @bruizersmom. I can understand your, "primary complaint." The after-effects of your stroke sound very difficult. Were you ever offered any post-stroke physical therapy or speech therapy?

Not a stroke, although the mental aspects of the seizure were evidently quite similar. In the hospital, they treated me basically the same way they treated stroke victims. They, too were very vociferous and demanding of help. When I was transferred to the nuse's station (where I was placed in an overstuffed chair and jammed under the counter at the station (to deny me mobility and to stop me from hitting the nurses' call button), I watched as the station nurse: when the p[hone rang, she leaned over too see if one of her stroke patient's light in the hall was on, and she would lift the phon e and drop it back, not saying a word to the poor woman begging for help. We were in what was called the critical-care unit....my letter of complaint to the hospital took the word of the nurses on duty: my words were false, exce[pt for my claim that the nurses referred to me as crazy to on-coming nurses. Oh, whoopee. I was offered at-home nursing care. That nurse may have been the one that left my condo screaming when I had another seizure, right in front of her. Do I want hospitalization? Never again. Do I want home nursing? That's simply funny. The one nurse (RN) who showed up to do my pill cas for me had me sit by her side and dictate directions (and correct her) for filling that case, even tho each bottle was marked with condition it was for, Doc who ordered it, and exact times of day when I took it. Says a lot for the professional training they had... Someone asked "how did I get thru it all, and how/where did I learn my coping skills. HAH. I had to find them for myself...who else could I rely on????????????? And my Parkinson's had just amplified all of the seizure crap I had to endure. Finding a doctor (nightmare), getting myself "recognized" by my new state, Connecticut, transferring prescriptions, fighting to get off in-active meds.....
I'm afraid you have no real concept of all I went through. But I do know, DO KNOW, that those on my floor were not looneys or just and old idiot...they were normal people having a NORMAL reaction to a medical crisis and being stuck with the inability to communicate got branded and dismissed by the medical profession - for what that's worth.

Have you been officially diagnosed with PD?
Do you have a Neurologist?
If so what meds are you taking for the PD?

Hello @joywin,

I see that you have posted in other support groups and I wanted to welcome you to the PD support group. Have you been having neurological symptoms as well?

I was diagnosed with PD in 2012. Managed it OK until last year when it has become quite difficult . Along with other chronic conditions that i suffer it's good to read how others are coping or not.
Joywin

I'm sorry to hear that your journey with PD has become more difficult, @joywin. If you are comfortable doing so, please share what symptoms have become most bothersome. Is it tremors, walking, balance, etc.?

Have changes in PD medications been tried? What about physical therapy?

I look forward to hearing from you. Will you post again?

Hello. How are you doing?

Hi. @sillyblone - how are you? Wondering if you were asking how @johnnyvsn was doing, or another member in this discussion on PD life being confusing?