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

Due to the increase in his symptoms and the fact that he started taking Carpidopa-Levodopa Aug 28,2024 it's hard for me to say if threse meds are helping. He goes to physical theraphy once a week and he feels better after doing the exercises. I want to know once the neck drop occurs will he every be able to lift his head up again?

Hello,
I just wanted to say welcome to the group. My spouse has had Parkinsons since 2013. It began with small handwriting and a fall at work. He was diagnosed with tremors . My brother is 67 yo in hospice with Stage 5 Parkinsons and Lewy Body Disease.My Dad died from complications from his Parkinsons in 2018. We received the official diagnosis 12 days after my Dad died. I cannot began to tell you all that has happened through the year's. He has Stage 4 + at this time. What did they say and what are you familiar with? Symptoms? I don't want to feel that you cannot share as it is very caring and supportive group. Please ask me anything that I have done with my family members. 🫂 🤗

Hello @macowen,

I want to join @sillyblone in welcoming you to the PD support group on Mayo Connect. As she said, this is a place where you can share your concerns and receive support. When my PD symptoms began (many years before the actual diagnosis), I had balance problems, foot dragging, a soft voice, and one-sided weakness. Once I began treatment (carbidopa/levodopa) I noticed a marked improvement. Medication, combined with regular exercise, is an important factor in delaying the disability of PD.

I look forward to hearing from you as you share a bit about your husband's journey with a PD diagnosis. How long ago did his symptoms begin? Has he begun medication or physical therapy yet? What do you need to know?

First of all, rember that you're our own advocate. Learn everything you can online...don't settloe for one description; dig as deep as you can: Mayo, Cleveland Clinic; AI; books from MJFox Foundation, from Phinney, from JAMA. Search for Parkinson's groups and Local Branches...there's lots out there, but you have to fid it yourself, then bring it up to your/his Motion Disorder Neurologist. And there afe plenty of symptoms/side effects/parkinsonisms (Whatever they want to call it) that you need to know about: neurologistd will only treat Their specialty. Plan on accruing multiple doctors who treat the individual s/s/p 's that a MDS(Oh, mentor, comment o that, please)

Thank you. My husband’s symptoms are still mild, just a little slow walking. We noticed and suggested Parkinson’s to our primary care physician who thought it was natural aging. She referred us to a neurologist and lots of tests including MRI and DatScan that confirmed what we had already thought might be Parkinson’s. We have been proactive with a plan of how we’re going to live with this disease. He is taking carbidopa/levidopa, has joined a gym with a personal trainer 3 times a week, and have bought a senior-friendly treadmill for home exercise. We’re are prepared for a long journey! I know we’ll need support along the way. Thank you!

@tower

Perhaps another member may answer your question about the neck drop. That is something I have not had with PD.

Here are some posts on Connect discussing neck drop: https://connect.mayoclinic.org/search/?search=neck+drop

What does his neurologist say about it? I wonder if it is from the PD or something else?

@hopeful33250
His doctor wants to rule out Myotisis so we have an upcoming test then she wants to talk about botox injections. The neck drop may be from another muscle disorder

Hi,
My name is Joe. I am 80 years old. I had open heart surgery back in 2011 and have recently been diagnoses with Lewey body dementia associated with Parkinson symptoms that go with that diagnosis. Due to my last diagnosis, I have serious balance issues and have progressing dementia. I am glad to be on this support group and looking forward to sharing my issues with you and hearing your issues that concern you as well.