Trying to help my mom figure out how to describe her symptoms.
Hey everyone, I’m hoping someone here can help us put into words what my mom is experiencing so we can better explain it to her doctors. We’ve searched and searched, but we’re having a really hard time finding descriptions that sound like what she is experiencing.
Some background: my mom was diagnosed with Parkinson’s in June 2025. She has always been extremely active. She’s a fitness and yoga instructor who teaches 15+ classes a week and works out almost every day.
Her first noticeable symptom was that, during our daily walks, her right arm suddenly stopped swinging. Shortly after her diagnosis, one of her biggest symptoms became what she describes as an internal vibration/tremor. Other than that, she was able to continue living her life pretty normally.
Recently, she started having these episodes that are very difficult for her to describe.
It starts with a very specific sensation in her left upper thigh/leg. She describes it as feeling like the muscle desperately needs to be "released" or "unlocked." However, when we actually touch the area, the muscle does not feel tight, cramped, or locked up.
Then something else happens: that sensation seems to trigger an almost immediate full-body feeling of panic/anxiety and an overwhelming urge to move.
During an episode, she feels an almost unbearable need to move or get away from the sensation in her leg. She describes the panic as being completely overwhelming, almost like her entire body and brain are screaming that something is wrong. The episodes can last anywhere from a few minutes to several hours.
Originally, these episodes were happening maybe once every few weeks.
About four days ago, she started a new medication, and since then the episodes have increased dramatically. She is now having them repeatedly throughout the day, sometimes with only a few hours of relief between episodes. She stopped taking the meds.
Obviously, that sudden change has us concerned.
We're also struggling with how to even describe this to her Parkinson’s team. Does this sound more like a Parkinson’s motor symptom, dystonia, akathisia/restlessness, a medication side effect, or something else? And how do you distinguish whether the panic/anxiety is causing the physical symptoms versus the physical sensation triggering the panic?
We are waiting for her next appointment with her Parkinson’s team, but the sudden increase in frequency has us worried that we’re missing something.
If anyone has experienced something similar, I would really appreciate hearing what you called it, how you described it to your neurologist, what you eventually learned was causing it, and what helped.
We’re not looking for a diagnosis from Reddit, just trying to find the right words and some experiences that might help us have a more productive conversation with her doctors.