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

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.

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?

You are certainly welcome. I am thankful that you are doing better. 🫂

I can certainly understand what you and your husband went through. The altered mental state was my new reality. I thought I was in prison with a death sentence. I was so scared. The meds are so powerful that they can create this. I bow to the people who helped me through. My son spoke with me on the phone while they were giving me the new drug. The nurse was calling me her friend and holding my hand. A very humbling experience. Only minutes before I was searching my room for hidden cameras. Anyway I am mostly back in the real world again. Thank you for sharing

My husband had back surgery last year. The year before Covid. He has a potential heart problem due to Covid. I was appalled at the Healthcare system. Empathy is not the same. My husband was scared and I could not believe how some of the staff were laughing at him. They kicked him out of the hospital a little over 24 hrs. of his surgery. He had an altered mental status. But Utilasation Review decided he could go home. The physician wanted him to stay longer. So because of the medical decision they made he did not qualify for inpt. rehab. That night it took me 2.5 hrs. to get him of the floor. He did not fall. He was so confused.I had to reduce his pain medication in half. His back is fine now. He has cancer. It seems everytime we go to the Dr. they give him a new diagnosis. The ER usually keeps u for at least 27-30 hrs. before a bed opens. Crazy world we live in. Be careful as people with Parkinsons do not do well with medications. I could tell you more but I think it is hard for you and your family when they see you suffer.

Yes it was tough. But I was lucky as well in lots of ways. It is a shame about your spouse, but it sounds like you are doing a great job adapting as best as you can. I have been using an electric wheelchair for a long time now due to a chronic back problem as well as PD. I try to make sure that we think about how we can adapt to do the things we want to do. Most times there is a way. Take care. The hallucinations were the worst thing i have ever experienced. I was scared witless as the alternate world became my reality for a few days. But my family got me through it.

I am so sorry. You don't have to apologize. You are lucky to have not had a terrible reaction to your embolism that was permanent. My spouse went to a Movement Disorder Neurologist. He prescribed a medication that would make him drowsy. Plus the cost was outrageous. He starts PT and Speech Therapy. He has quit every PT that has been ordered. I do not expect anything different.He has a paralyzed vocal cord which makes it difficult to clear mucous. I can't wait to see how he stays for the appointments. I have taught him how to get out of bed, chair..He does pretty well for now. He is not handling some of the things he cannot remember. I just show him again. He is able to still be apart of life. It is the falling and dizziness that makes it rough. He is a trooper and does make me laugh and sometimes he is not nice. But I am fine and I get through it. My point in this is be careful. Make sure you are safe. God bless you and your family.

Thank you. I think I had PD for longer, but the official diagnosis took a long time.

I was recently prescribed Entacopan to smooth out off times. I had what I thought was a major side effect. Ended up in hospital. They found I had pulminary embolysm. That was treated then something went wrong with another drug I am taking, Rasagiline. Somehow I ended up with halusinations and parnoia. A bit scary. But home now. Encapatone changed to Opicopan, and been weened off Rasagiline.

Sorry about spelling

Hello Tony,
I hope you are feeling a little better. My spouse has Parkinsons and has had it since 2013, but was misdiagnosed. He was officially diagnosed in 2018. It was not a disease we thought he would ever have. My Dad died 12 days before from complications from his Parkinsons. I cannot do anything to change it ..but I am so glad that I found this site. It is a hard battle. Hugs and prayers to you and your family.

Hi my name is Tony. I was diagnosed with PD in 2017. I am on loads of meds now. Just been in Hospital. Not a good experience for me and my family. But home now, and changing meds.