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

@madavidson13 Hello Mary Ann, and welcome to the PD support group on Mayo Connect. I'm glad that you found this forum. It will provide you with encouragement and support. Diagnoses like PD tend to take us by surprise, even if we have had symptoms for a while.

Share as you would like, a little about the symptoms you experienced which led to the PD diagnosis. Have you had these symptoms for a long time? Which are the most troublesome for you?

@madavidson13
Wish I knew any info, but I'm just trying to get used to the new things myself!

Right now I'm not any medication other than a probiotic that my wife thinks is a good idea, not sure where she came up with that.

The variabilty is one of the worst problems for me too!

@kshansen
This is the first time I’ve read anything posted on this site.

I was just diagnosed with Parkinson’s in December of last year, so it’s only we’ve been a few months. I’m finding navigating this disease is not for the fan of heart.

I’ve already experienced a change in my bowel habits. I used to be very regular every morning on the dot. Nowadays, I can go several days without having a BM and I go from being constipated to loose stools. We’re trying different approaches to the changing bowel habits. At first, I thought it was my body getting used to the medication. But I don’t know now I have so many questions. Thank you for this encouraging post. At least I know I’m not alone.

MaryAnn

@kshansen
For PT exercises at home, I will just again put in my vote for the youtube Power for Parkinsons
For bowel issues, I found keeping daily notes to be helpful, and being patient (no pun intended).
It takes 2 or 3 days for whatever is ingested to get through the whole system, for "normal" folks' digestion. What you take today for a bowel issue may not have effects right away. So I try one thing, such as a new fiber, more water, softeners, for enough days, maybe a week, so I have a better idea of what the effects are. I try various things but individually at first. I had to learn to stand back and give myself the time to learn what works for me.

@kshansen
You have described my GI issues exactly - it is baffling and truly alters my life and schedule. I've read about the effects of autonomic nervous system failure/dysfunction which often accompanies PD and the involvement of all the "automatic" body systems (GI, urinary, loss of sense of smell, etc.). It is a problem for most people with PD to some degree. I have to monitor my diet and fluid volume status and have found a "plan" that makes things tolerable for me, but that can vary individual to individual. Miralax at night and Probiotic every morning with Omeprazole for refractory GERD all help. Good luck - trial and error will get you some relief.

@colleenyoung
My husband, 83, has been told that he has Parkinsonism which takes longer to blow into full Parkinson (?). He also has neuropathy of the legs due to diabetes (walks with a walker), short term memory loss which will probably lead to dementia. He has also had prostate cancer in 2023 and did radiation. He has had UTI since October and they finally found the strain and were able to control that with antibiotics. So a lot is going on.
In the last 8 months it seems that we are going through a roller coaster. It seems that almost every month, he seems he loses strength in his legs and can't stand up without assistance. We have gone to emergency where they treat him for his UTI. He then has to go to PT to get his muscles strength back. This time I took him toa different hospital and the Parkingson disease doctor evaluated him and said the roller coaster is probably due more to the Parkinson than UTI or any other issue. I am writing to see if other members who have Parkinson have experienced this roller coaster (in and out of hospitals and PT) and what do they do about it rather then going to the ER? No doctor so far has definitely been able to say what it is other than "it could be..." Thank you.

I'm thinking I need to start making notes, especially early in the morning, about how I feel at times. Do have an appointment with doc later this month.

Need to ask/tell him about bowel problems mainly in the morning. I can go from feeling somewhat constipated to having very loose stool about an hour later.
Then there are the times like when we are going to my afternoon PT appointment about 15 minutes from home and I feel like I need to get to a bathroom fast but then when I get there little or nothing happens< grrr>.

I could maybe understand if I did not have a positive feeling about the PT, the doctor(?) is very supportive and easy going and even if I have some problems with part of the PT she is always very encouraging. I do have similar problems at times when we need to go someplace, like out to eat or shopping. I never had a problem like this in the past.

@hopeful33250
My worst time with movement is early in the day, to me early in the day used to be 6:00am the last couple years it is more like noon! Not saying I have what I would call major problem moving but it can be too easy to just kick back in the recliner at times.

The neurologist I have been seeing gave me a set of exercises to do three times a day, from climbing the wall, squats and stretches, and five minutes punching a pillow hanging on the wall then half an hour walking on a tread mill or a couple laps around ten acres of lawn on warmer days.

As for how long I've had PD I would have to say going on two years. One other problem I would say I have is memory problems. I do not recall, but could be wrong, that I did not have these problems before I was in an accident while riding a Vespa. I was coming to a stop behind wife on her three wheel motorcycle. Next thing I can recall was being in a hospital in Rochester NY. I only have a couple short(very short) memories of couple things there and I was there for a week! Not sure but have a feeling they did not care at all about me or my wife. Lucky for her other than damage to her ride from me being ramed in to it she did not get injured.

I have been doing PT twice a week for a few months if nothing else that does help with my emotional feelings a bit. Not sure how much longer my health insurance will help pay for that!

I'll close there as I can get way off topic at time these days!

Anyone else biting their tongue and lips while eating?

@clearcut
Hi Don,
Welcome to Mayo Connect. I see that PD is a new diagnosis for you. When I was first diagnosed, I was having problems with balance, foot dragging, and a very soft voice. Once I began carbidopa/levodopa, the symptoms began to lessen. Physical therapy and a regular exercise program have helped to stabilize my symptoms.

Share, as you would like, the symptoms that resulted in a PD diagnosis. Have you begun treatment with medication or exercise, yet?