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

Posted by Colleen Young, Connect Director @colleenyoung, Dec 8, 2016

Welcome to the Parkinson's Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson's or caring for someone with Parkinson's. Let's learn from each other and share stories about living well with Parkinson's, coping with the bumps and offering tips.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

bern7475 | @bern7475 | 1 day ago

Hello, I have been dealing with a variety of symptoms that has finally been given a diagnosis “Parkinson’s.” I was not completely surprised as I was a caregiver for my father with Parkinson’s. I also have 5 cousins ( fraternal) who are dealing with their diagnosis and varied symptoms. I would love some ideas, methods and surprisingly helpful suggestions to make me still feel like a member of society and less like I’m a standout fumbling entertainer. I’m having a hard time accepting the whole “ Parkinson’s package “. This is also the first time I’ve admitted that out loud.

Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago

In reply to @galactic33 "Has anyone had experience with a 70 yo loved one who has abnormal “lack of GI..." + (show)

@galactic33

Has anyone had experience with a 70 yo loved one who has abnormal “lack of GI tract sensation” being told it is time for routine colonoscopy?
She has symptoms at least 5 years ago. Finally diagnosed in September 2025. Healthcare is crumbling (i was a PA in CT surgery for most of my 39 year career and retired in 2018) First big clue to Parkinsons was in 2021: was seen for some abdominal discomfort at a walk-in clinic, told it was UTI. Within 8 hours she wasseen in an ED for increased abd pain. CT showed a hot appendix. Four hours later when they took her to the OR they attempted laprascopic procedure…found “alot of loose stool” in abdomen, aboorted and opened. Did appendectomy, small bowel resection. Post op day 7, clamped NGT and began clear sips. That night I was called thatbthey were going back to OR for “bleeding from the spleen”. Apparently the spleen was nicked during the attempetd laarascopic appendectomy. ICU was Full. (Covid). Taken back to Or for emergency splenectomy. Makeshift ICU bed on surgical floor. Home 14 days after that with home Nursing, HomePT, home OT, home blood draw. (Rehabs all were full) Finally able to advance fromwalker to cane in 3-4 months. But I noticed what looked like “foot drop” back when she came home. No improvement. 5 years later we learn this was the first real clue: Parkinsons. Another perforated bowel in 2025, emergency surgery, ICU for a week, on pressors. Bleeding. Blood shortage. Finally a 2 week stay on Surgical Floor. Then rehab. Now, one year after her diagnosis, the surgeon who did the October 2025/surgery asks about when her last screening colonoscopy was. Turns out she is due. He has booked her for November. I am concerned about the prep and the procedure as her life has changed dramatically: weak, uses walker only, sleeps alot. She has been through hell. DOES ANYONE HAVE ANY EXPERIENCE WITH A “ROUTINE” BOWEL PREP FOR COLONOSCOPY IN A PARKINSONS PATIENT WHO HAS SLOW MOBILITY, WEAKNESS, PAUSES, AND WHAT APPEARS TO BE DIMINISHED BOWEL SENSATION.? Even tho diagnosed a year ago, it has taken until this summer to get a neurology appt and the neurologist is 45 minutes away.

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@galactic33

It sounds like your loved one has had a very difficult time with various health issues over the past few years. It appears that she has some of the symptoms of PD. Has a PD diagnosis been made at this time?

Your question about colonoscopy prep is not one that can't be answered on this forum. The members of Mayo Connect are patients and not medical professionals. We can only share our own experiences, but we cannot provide medical advice.

Does your loved one have a PCP or another trusted doctor that you can talk with? If she has been diagnosed with PD, perhaps her neurologist could offer an opinion.

galactic33 | @galactic33 | 23 hours ago

Thank you for your reply. Maybe I asked it wrong but was wondering how the mechanics of rushing to a toilet have worked out for anyone w Parkinsons. The concern is: is the risk of falling (by rushing…which PD patients cant do) greater than the risk of not having another invasive procedure? Yes….I have found very little reliable resources in the medical community here…But I am trying Daily. Thank you for all you do by providing this forum. ❤️

Teresa, Volunteer Mentor | @hopeful33250 | 1 hour ago

In reply to @galactic33 "Thank you for your reply. Maybe I asked it wrong but was wondering how the mechanics..." + (show)

@galactic33

Yes, I certainly understand your concern about rushing during a colonoscopy prep. Could you consider having a portable commode to keep nearby to shorten the trip to the bathroom? These can usually be purchased at a medical supply store. Also, have her use an adult diaper, such as Depends, with an incontinence pad inside. This might help to avoid any accidents.

You could also ask the doctor if she can extend the prep over two days, rather than one. This sometimes makes the final day a bit easier. For example, I've used Miralax and a very soft diet the day before the actual prep begins.

Here is some information from Mayo Clinic's website that might be useful:
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-tips-to-make-colonosc
Here is a discussion on Connect about colonoscopy prep that might be helpful:
https://connect.mayoclinic.org/discussion/another-issue-regarding-colonoscopies/
I know this is a difficult procedure for a person with mobility issues. Talking about these concerns with the doctor who prescribed the procedure might provide helpful information.

Will you post again with any other concerns?