When is it supposes medication have an effect?

[BluesHealer]

By middle of November 2020 I was diagnosed with a “clinical picture suggestive of PSP”, being freezing of gait (FoG) my claim. This is the end of a long road of claims (inbalance, neck pain, radiculopathies, a.s.o.) after being submitted in November 2015 to a ACDF surgery to decompress my spinal cord at C4-C5 (asymptomatic myelomalacia discovered by casuality in a MRI). My strong recommendation: don’t go through such a surgery if you are asymptomatic! I still believe that my FoG/PSP is a consequence of the surgery. Since November 17th I’m taking Amantadine, but I don’t feel any improvement concerning the freezing of gait. Is this normal? When is it supposed the medication have an effect? Many thanks.

[messier]

I'm sorry you've had to find this Forum. As you are new to this disease please do take time to look around this site as it will help you to understand much more about your disease than you are likely to get from your doctor. Parkinson's treatments do not necessarily work well for PSP, and in fact if it's not working it's more likely that you have the right diagnosis and that it's not Parkinson's. There is no evidence that PSP is caused by surgery. In fact in the experience of my family, having an unrelated medical problem means that getting a progressive neurological disorder recognised and diagnosed is much slower so I am sorry this has happened to you. I am sure that you will find that people on this Forum are willing to listen and help you so please ask away (and don't worry about your English!)

[BluesHealer in reply to messier]

Thank you, messier, for your so kind reply. Indeed the symptoms after the surgery may have masked the actual diagnose of PSP. Anyway in November I was told by my neurologist that my PSP is at a very beginning - I’m not so sure about that, having in mind the previous pos- surgery claims. Next February I will have a follow up consultation with the neurologist and suspect that he will request a new MRI to verify if the Hummingbird sign is more evident or not, and to to evaluate the (no) response to the medication. Kind regards

[AJK2001]

Sorry to have to welcome you to this site but glad you have found us & hope you find it a useful place to learn, share and at times just rant. My Mum had PSP and at first did take Sinemet which improved her gait - she tended to lurch, however over time the effectiveness reduced. She was tried briefly on Amantadine but was taken off it as we felt it may have been upsetting her blood pressure and causing more falls, a disinterested GP would not give her a monitor to check. A MRI scan is not necessarily conclusive that you do or do not have PSP. Mum had a couple of scans (before she decided the discomfort wasn't worth it) that showed slight changes in the brain but no definitive hummingbird, her symptons were however classic - restricted eye movement, changed gait & unexplained backward falls.

A good place to find more information about PSP is the PSPA website, don't know if you have a Portuguese equivalent, look at the pages for professionals as well as for sufferers. It maybe too much to handle at first, but I came back to it time & time again. That, this forum and an incredibly supportive Community Matron were what got Mum & I through her journey.

xxx

[BluesHealer in reply to AJK2001]

Thanks a lot, AJK2001. I’m realizing that each case of PSP is a different case, but with some things in common. Also myself was first diagnosed with Parkinson, but since I didn’t respond to Sinemet the neurologist concluded that it is a case suggesting PSP , and added that even this is not for sure... So he prescribed Amantadine. But i’m not getting better of the freezing gait. I fear that it might be something even worse than PSP. Freezing gait is my main claim, if not the unique claim, in spite of the neurologist supporting is own opinion on the hummingbird sign, which by the way was considered by the radiologist as normal for my age. I’m anxious and also very afraid of what the next MRI will show. Kind regards and best wishes for you.

[falcon946 in reply to BluesHealer]

There are many things you can try to help with freezing of gait besides medication. A metronome app that keeps a beat can help. Music, counting, a laser pointer on a hat or cane so you aim for the dot, physical therapy and even weighted vests like they use for MS. Whether your FOG comes from PSP or something else, exercise is helpful. Biking on a stationary bike or walking (of you have a dog, the dog may be very helpful as they keep walking and so you may too) best wishes

[BluesHealer in reply to falcon946]

Thank you so much falcon946 for your kind support. I’m trying to understand what is this strange thing, the freezing of gait, how it happens, what I can do to resolve when it occurs, particularly with my own behavior - sometimes I think that it is a psychological phenomenon that could improve by hipnosis or so, but I don’t find nothing in the internet in this respect. Meanwhile I’ll be trying something similar to what you suggest, in special to face the situations as non- automatic, and “thinking before walking” and “planning before walking”. Best wishes, falcon946.

[BluesHealer in reply to falcon946]

Hi falcon946. Let me explain in a different way: what I’m trying to do is always remember to “put my brain into gear before putting my legs into motion”

Best wishes