PSP “ offered”me one-day lull - just one day - Is this common to happen in PSP?

[Amadeu]

Hi, Everyone!
Some weeks ago I wake up in the morning without feeling any of the symptoms of PSP. No freezing of gait, no unbalance, nothing. I felt myself a completely new person, the way I was many years before. Unfortunately, this event only last for one single day. I will speak about this next consultations with my neurologist, next month. Does anyone of you experienced such a situation? What might be a possible explanation for this event? I’m not taking any medication from beginning of January (I suspended Sinemet and Amantadine, as recommended by my neurologist due no visible effects on my condition). Many thanks for your help and support

[Amadeu]

Thank you so much, AnnieBrooke, for your interest in my case .  In Nov 2020, diagnosed with a Parkinsonism suggestive of PSP - Progressive Supranuclear Palsy, with possible onset in 2018, being Freezing of Gait only on turns my complaint.

[AnnieBrooke]

It seems more like Parkinsons than PSP, due to the on-again and off- again nature of the freezing of gait. I don't know a lot about it and so be sure to ask your doctor again, but I think that in Parkinsons, freezing of the gait happens occasionally and more often when the brain is processing a lot of things at once (for example, being in darkness AND having to remember where the furniture is in an unfamiliar room AND walking too). My dear friend Ed had Parkinsons, and he got along better riding a bike than walking, because his legs just went down and pushed, and rode up, and he didn't have to think about them at all. I do think the diagnosis of PSP is basically based on symptoms, right? Like, there isn't a blood test or lab work that "proves" it. So in your shoes I would seriously keep after your doctor and see why you have been given the PSP diagnosis. It might be just Parkinson's. (Not that Parkinson's is super great news, but it's better than PSP, and I think there are some meds for Parkinson's but not that many for PSP.)

[Amadeu]

Thank you so much for your kind opinion. Specially when you say that “ freezing of the gait happens occasionally ” this means a lot for me, because I also believe that my freezing is different from the definition. In my case it happens ALWAYS when I turn - there’s no ON OFF status- and this also in my opinion may make all the difference! Some months ago I get a 2nd opinion from a neurologist that stated that for a such PSP should be  what he called a “benign PSP”. I realize today that such a sort of PSP is also a possibility (or a phenotype called PSP-PAGF - akinesia with gait freezing). On the other hand, the fact of having occurred this one-day make me think that some neurons might stay intact and/or some surge of dopamine may have taken place, specially taking into account that I’m not responsive to Sinemet or Amantadine. Many, many thanks for your so kind interest.

[AnnieBrooke]

Read all the medical articles you can find on PSP, and ask your doctors informed questions. Good luck!