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Living with Parkinson's Disease - Meet others & come say hi
Parkinson's Disease | Last Active: Nov 7, 2025 | Replies (743)Comment receiving replies
Hello @tony42miles and welcome to the PD support group on Mayo Connect. I see that @sillyblone has already replied to many of your posts and has offered some personal experience about her husband's PD. Hospital experiences for PD patients require a lot of diligence on the part of the patient, and if the patient is not able to be diligent (especially after surgery) you need to have a caregiver by your side to be sure that your needs for medications and movement are being addressed.
Here are some important guidelines, from the Parkinson's Foundation, for hospitalization if you have PD:
https://www.parkinson.org/resources-support/hospital-safety-guide
You can order the safety guide or download it for future reference. Getting your medications on time is very important. Also, being up and moving is necessary to deal with the stiffness that can occur during hospitalizations.
How are you doing now, Tony? What are the most difficult symptoms you are dealing with?
Replies to "Hello @tony42miles and welcome to the PD support group on Mayo Connect. I see that @sillyblone..."
I use this same program. I want to get a bracelet for him for the dx.of Parkinsons. Any ideas? I wake up every morning is he still in the house or wondering in the neighborhood. He has fallen on our driveway so many times I cannot fathom what could happen. I have a first aid kit in my car, two in the house. He takes aspirin. He has a nosebleed on one of his falls. I packed his nose and put a pressure dressing on his nose. He could breathe. I wrapped his arms because of road rash. He would not use his walker. I think differently then he does ..but he thinks he is ok. Not !I did say if you take off and I cannot find you I will call for a Silver Alert. What did he do today. Same thing. I cannot watch him 24/7. He turns off security. I guess he won't bleed if he does that!!! There really is nothing I can do. He is a grown man and he can do whatever he wants. But he cannot drive. He will never find my keys. Any suggestion????
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Hi,
At the moment because there are major changes in my medication, keeping the Dopamine balanced is challenging. Rasagiline is being titrated down. I started taking a tablet every other day, then missing two days a week later, now I am entering a week where we miss three days. On the days when I take a Rasagiline tablet I need less Levodopa as the Rasagiline still appears to be contributing to the available Dopamine. Also the Opicapone is starting to get to a therapeutic level. I have had periods of Dyskinesia some severe during this process so am now very aware of getting the balance right.
he other thing is pain. Is the pain caused by Dyskinesia spasm or is it a withdraw symptom from the Rasagiline, or is it just caused by spending 5 traumatic days in hospital. Not sure really.
The unexpected discover of blood clots, albeit small ones is also concerning. I am on blood thinners. I guess I don't really know why I should suddenly get blood clots, or have they been there for a while. Could it have been related to the excruciating spasm I had when the medics tried Encapatone. I don't know. Can you even get blood clots from a muscle spasm that lasts a couple of hours?
Sorry lots of questions. Its probably because I am learning to be in the real world again rather than the dream world I was in at the hospital.
I need to get back to doing wheelchair bowls and hydrotherapy again, that will hopefully do me some good.
Loads of rambling and off loading I am afraid.