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

I understand the feeling of not believing a PD diagnosis, @halenbon81! After I began taking PD medication (carbidopa/levodopa) and had more confidence when I walked, I began to accept the fact that if the medicine made a difference, PD must be the correct diagnosis!

I had searched for a number of years to find a neurologist who could help with my balance, gait, and walking problems before the PD diagnosis became a reality. For me, it was a relief.

What type of symptoms led you to the diagnosis of PD? Have medications been tried, and have they been helpful?

@halenbon81 time will help you resolve your frustration then all we can do is the best we can do is, do not get upset or inpatient we are all in this together take care of yourself and hopefully you will find someone to connect to personally and have a friend on your side

@halenbon81 Hi. I am not angry. I am glad to finally have a box to put this in but I am frustrated by the fact that I made life choices meant to protect my brain only to land in this boat. What annoys me are the chemical manufacturers and the careless or uninformed who use them. Right now I'm distressed over the celebs w/PD who are keeping their mouths shut. This is not an STD in the 50s. They should get out and shout "Hey, people. This is real. We have to fix it."

@nova11723
Two doctors asked YOU why you had PD?

I too was angry at being diagnosed with PD. My diagnosis came about 13 years ago. I was more frightened of the future. The best I can say is there is life after PD diagnosis. You will learn to adapt to symptoms PD puts in your path but being active and accepting small victories over PD you will learn you are the same person you were before your diagnosis. It’s just your body is changing. I was diagnosed at 58 and am now 75. Stay with the support group. It will help.

This was a great way to describe your adjustment to PD, @agentlady. Being active and accepting small victories is what we all need to do.

Since you were diagnosed some time ago, how are you doing now? What are your most bothersome symptoms?

I’m doing good but I see some progression. Support from family and friends is so important and having a doctor that I can talk to honestly has been life saving.

I am new to this site and trying to navigate it correctly. My husband was diagnosed with Parkinson’s last year at age 81. Symptoms such as sleep disorder and loss of smell have been around for many years as unknown symptoms, so it’s not early stage. He now has dysphasia and I am working hard, but struggling to manage meal planning. He is on an IDDSI diet level 5/6 and I would appreciate any advice to help him.
We’ve always been very social with a younger mindset, but this is so limiting and causing isolation. He sleeps almost every time he sits and is discouraged by that. He participates in a rocksteady program, but is resistant to going, I’m hoping he’ll continue. At this time, his symptoms are non-motor.
Blessings to all of you who are coping with this disease. Please redirect me if I haven’t posted in the right area.

Hello @quarrygirl, and welcome to the PD support group on Mayo Connect. Your situation with a diagnosis is similar to that of many of us. We had the symptoms for many years before a diagnosis was made.

You mentioned that he participates in Rocksteady but is resistant to going now. This type of apathy is common but unfortunately does not help. Exercise is beneficial to those of us with PD. If he is resistant to going to exercise classes, I'd encourage you to look on YouTube for Parkinson's exercise classes. There are many free exercise videos on YouTube which might help him get some movement back in his life.

Have you discussed his daytime sleeping with his doctor? Perhaps a change in medication (or a change in the dosage) might help him. Adjusting to a PD diagnosis can be difficult.

If his resistance to being more active continues to be problematic, it might be helpful for him to be evaluated by a neuropsychologist. There might be some medication that could help.

Please continue to post. We are here for patients and the caregivers! I look forward to hearing from you again.

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.