My mom is now 81, she was diagnosed in 2018 with psp. Most notably her symptoms were a 90 degree slant of her body to the right, tremors (she has a battery and a system in her skull to stop them), inability to write or speak legibly, she permanently uses a wheelchair, eyesight issues, and choking with a lot of phlegm. All of these symptoms and more were obvious in May 2023 with a slow decline over the years.
In august 2023, I visited again and many of these symptoms are gone or greatly diminished. Currently she can sit very straight, speak almost clearly, write slowly but clearly, a lot less phlegm and choking, and she is able to assist us when moving from chair to bed to toilet to wheelchair. Recently she has also been able to walk several steps alone and also with a physical therapist using a belt.
Has anyone ever seen this happen or heard of this great an improvement? We are wondering about a misdiagnosis….
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Aljosh2013
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Hi, Symptoms can appear or show more when there is an infection. This year my wife's symptoms got a lot worse and new ones emerged as she got one infection after another including 2 bouts of Aspirational Pneumonia. Now the infections are clear and the phlegm and choking are under control with drugs and feeding tube she has recovered from most of the new symptoms although she has not regained her balance, this is her new base line.
I have also seen days when she is much better, rally days, but these tend to be short lived.
Do you see her day by day? As I find Mum has good days and bad days, no rhyme or reason for them but sometimes you think wow she can do that still and other days or even hours she’s worse than I thought.
Wow ! That is great to hear. While I have been diagnosed with CBD , which it has been said is very close to PSP, I have experienced some improvements, of late. I was initially diagnosed with Parkinsons/possible Parkinsons Plus in February 2018.I am 61 years old. I got the diagnosis of CBD last year which was devastating news. My mobility was affected, going from using a stick to presently a rollator. I have dystonia in my right foot, dysarthia and dysphagia and very much weak down my right side.
I have experienced pain all over my body particularly in my legs and what they call alien limb.
Back in May I did have an op to remove a benign tumour from my parotid gland and had a good recovery. I forgot to mention my speech was affected & had swallow issues.
About a week after my operation I noticed that my speech seemed to have improved, becoming clearer and hardly any hesitancy. I no longer slur. I do still need thickener in my drinks. I asked the doctor at my return visit after my op had this to do with removal of tumour to which he responded no! But my mobility also has improved to the point I walked several steps without rollator.
People had noticed these improvements so I knew I was not just having wishful thinking.
I am due to see my neurologist this week who is not aware yet of these changes since I was there last so I will post here what her perspective is on my account of events. When I saw your post , it was like , that is also my question! You know your own body or your carer knows your everyday routine and so can notice any changes. As these are under the umbrella of very rare brain disease
who is to know what exactly can happen with symptoms?
I do like to of course focus on the good days for anything particularly a better outlook for this so called life limiting disease. I just ask one question.....while I'm aware of the individuality of this disease, what is the general answer given, to date,
of timeline of CBD / PSP .
Have been told, it's more 6 to 8 years since symptoms started.
As concerns timelines, it appears what you are quoting is merely an average! There are some who manage only 3 years while others go beyond 10 years! Therefore that average is probably a useful tool for those planning in the health sector but not for individuals!
Hello Kowala, about timelines. My sister was diagnosed with Parkinson's, later Parkinson's plus, and 5 years ago she was diagnosed with PSP-P. His first diagnosis of Parkinson's began 15 years ago. Now his neurologist doubts the diagnosis of PSP.
She has the assistance of a physical therapist 3 times a week and a phonoaudiologist once a week. She now, don't needs thickeners. Hope this comment could help.
This sounds like she has plateaued... meaning she has stabilized. Unfortunately, this will change. Make the most of this time, forever how long it lasts.
While I understand the concept of plateauing, does this mean also that symptoms that have been there for years have almost disappeared? I am just wondering about a misdiagnosis….
That's difficult to say. A misdiagnosis can't be discounted, but unlikely. Many cancer patients go into remission for long periods of time, only to have it return quite aggressively. Regardless, make the most of this time, very few have the opportunity.
How wonderful for her! Only time will tell. It is possible she had a PSP-like syndrome that mimicked the disease. She could be very lucky and have recovered from whatever else it was.
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