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

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.

Please go to the Parkinson Voice Project web site at ParkinsonVoiceProject.org. From there you can find a Speech Pathologist that is trained in SPEAK OUT! Click on Find a SPEAK OUT! under Our Program. Then find your state on the list. If you have a Therapy and Research Center in your state you can receive treatment for NO charge. And you can receive treatment either virtually or in person. If your state does not have the T and R Center then check the middle column and look for Certified Speech Pathologists in your state. 90% pf people with Parkinsons will have speech and swallowing issues. We use the same muscles that we use to talk so this is really very important. It is important to participate in this program. PVP is a non profit organization in Richardson, Texas. This is the only organization in the world where you can get this specialized treatment. The program is proven to be effective. When you are looking at the website )1 look at Testimonials and 2) under Education and Training watch the What is Parkinsons video. It is excellent.
https://parkinsonvoiceproject.org/program/find-a-provider/
https://parkinsonvoiceproject.org/program/testimonials/
https://parkinsonvoiceproject.org/education/what-is-parkinsons/

If you have any questions let me know.

@cmccarthy1115 @ethel2017

Here is a link to a YouTube video that provides some vocal exercises for those with PD. Until you are able to meet with a speech therapist, these exercises may be helpful,
https://www.youtube.com/results?search_query=voice+therapy+exercises+for+PD

Thank you I will look into the Voice program