EARLY ONSET PARKINSONS
I was diagnosed in my 40’s with Parkinsonism. Now 10 years later my tremors have worsen and having memory issues. I still walk by myself and get around alone. I have pain and stiffness in my legs and pain all over my body. The neurologist started me on levodpa< and mirages years ago. I am no longer on medicine and currently not seeing a doctor. Does anybody have any ideas for me. I don’t know where this is leading me. Very lost with depression that I haven’t felt this bad in along time. I am no longer intimate with my partner and has put a strain on relationship. I just don’t think they know what I am going through.
Even if meds haven’t helped in the past, it would really be worth reconnecting with a movement disorder specialist. Parkinsonism symptoms (especially pain, stiffness, mood changes, and memory issues) can often be managed better with adjusted treatment plans, rehab, and support therapies, not just one medication.
Also, the depression and relationship strain you mentioned are very common in this condition—and you don’t have to handle that alone either. A doctor or counselor familiar with Parkinson’s can actually make a big difference in quality of life.
You’re not stuck with this without options—getting back into care could really help you regain some stability.
Hi, I came across your message and wanted to reach out. What you're describing — the pain, stiffness, memory issues, and the emotional toll — is unfortunately very common with Parkinsonism, and you're not alone in feeling this way.
One thing worth knowing: when medications stop working well, there are surgical options like Deep Brain Stimulation (DBS) that specifically help with tremors, stiffness, and reducing medication dependence. Many patients who felt "stuck" found significant relief.
I work with a neurosurgery team in Istanbul that specializes in these procedures, but more importantly — I'd really encourage you to reconnect with a movement disorder specialist, wherever you are. You deserve to have options explained to you.
If you ever want to ask questions about DBS or surgical treatments — how they work, who they're for — I'm happy to share what I know. No pressure at all. Wishing you strength.
