My Parkinson's life is so confusing - this is not easy.

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

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?

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

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.

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?

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.

@bruizersmom
I appreciate you sharing how you deal with the emotional aspects of PD. You have developed some great coping strategies that are working well for you.

In looking at your profile, I see that you have numerous health conditions. If you are comfortable sharing more, I wonder how you developed these great coping mechanisms. Have you always been creative in finding ways to heal?

Nice video.

I think you should specify "symptoms". My most troubling are mental or psychological symptoms, as opposed to physical symptoms.
I try to treat all of my mental...my brain episodes... the same: deep breathing, listening to music I can relax to, as well as music I dance to, singing outloud, forcing myself to do physical work when my apathy has me stagnating and worrisome, and just plain sleeping. With a combo of these I can usually pull myself out of a deep depression, including being very suicidal, or an anxiety attack that has me screaming and yelling at someone (and temporarily HATING them). Fixing my BRAIN is fixing a part of my body. Yes, I can do things to fix my brain. And with a lot of puching myself, I can break a period of apathy.

I just thought I would share this. I accidently picked up a toothbrush that is for children. It was heavier and fat. My spouse loved. He said it made him not shake as badly when brushing his teeth. I know that their is alot of DME that are not covered by Medicare. Hope it helps someone!