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

@hopeful33250
Yes, happy to share.
Diagnosed in 2022 here in Guyana where I now live.
Tremors came first but fatigue most troublesome now. Balance also an issue. Mostly house bound. I sleep 9+ hours a day.
Am supported by wife and daughter thankfully.
If I start feeling down I use a healing prayer to get positive again. It also helps with the fatigue.

@maxvt How did you know about pelvic floor?My Dr. gave me pills for prostatitis and hasn't helped one bit.

At my first visit with my surgeon, he advised me to get and read Dr Patrick Walsh's book on Surviving Prostate Cancer, which should be read by any man facing this disease. I am 99% confident that Pelvic Floor exercises are mentioned here; also I did tons of research. Men, after a prostatectomy face the possibility of incontinence. I learned about these exercises and did this PT with a DPT, at a Baylor Scott & White facility in Austin Texas. She taught me the exercises, I saw her twice a week and did loads of Kegels all day, every day - These exercises you can do while watching TV or reading a book. After my operation, just over 4 years ago this month, I had

ZERO INCONTINENCE!

I continued more PT and kegels for a few weeks after. My PT lady confided in me that there were a couple of patients who had done no PT before their surgeries and they were still struggling six months after surgery.

This book has a "highlighted" synopsis of what is in the chapter. Read this, then decide if you want to read the chapter. I did read most of it.

I also read in that book that radiation is possible after surgery - giving one a "Plan B." But surgery after radiation may not be viable. I am of the belief to cut it out. BTW, attaching the "overnight" bag to my catheter gave me the most restful sleep I had in months! LOL!

Hit me up if you have any more questions! I am here for you and for others.

@maxvt, great post. I'm tagging @larry68 to make sure he sees your response.

@larry68, if you want to connect with other men with prostatitis, you can visit the Men's Health support group and search for prostatitis https://connect.mayoclinic.org/group/mens-health-1/

Like @maxvt said, many of the guys use pelvic floor exercises (Kegels) after prostate cancer treatment. There are many discussions about how to do Kegels and pelvic floor exercises for men in the Prostate Cancer support group.

@colleenyoung I just gotta figure out what Kegels are.I am going to Baylor Scott and White hospital tomorrow so i can maybe find out tomorrow.

I am grateful for this site. Y'all get me thru the tough days. I've always had an affinity for animals. After I was FINALLY diagnosed w/PD in 2024, I sold my goat herd and I am down to 1 dog. She's awesome. With little to no training from me, she has perfect in-house manners, braces me when I need help getting up, steadies me on the stairs and alerts me when my watch alarm beeps (I'm sure I'll need that one day.) Anyone else have furry assistants?

anyone want to chat every so often about how they're dealing with their parkinsons??

Feel free to start a conversation about PD, @js2022. Just post a comment or question, and others will join in.

Is there a specific topic you are interested in discussing?

I would like to discuss how fatigue can consume someone with PD. I've been on Crexont and noticed since the days started to get shorter my seasonal affective disorder has really kicked in. Can that be added to my fatigue?? Wd love to hear from others with PD.

@js2022 I tried Crexont for two months, and it made me kind of stressed out. I would love to hear stories about cases where Crexont worked.