two years ago I was diagnosed with PSP. I had had over 200 falls in 3 years then dizzyness that won't stop. Now I walk with a rollator which I have used for 2 years. If I don't use it I fall. I went from tripping and then using a walking stick then falling and using a rollator no considering a wheel chair.
I have many grab rails and carers morning and night but I want to know does anyone know how to get rid of the dizziness. I feel like I am on a continuous boat journey with motion sickness. what can i do. my writing is terrible and my typing is getting worse and worse.
Do I really have PSP?
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rocklady73
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Hi, I am not in a position to tell you if you have PSP but the symptoms you describe do commonly come with PSP, and sadly as the name suggests it is progressive.
The control of the muscles including your legs deteriorates and so does balance.
Fine motor control is also affected causing micrographia, small hand writing. You may also notice when you stir a saucepan it is very small movements too.
Eye movement issues can affect typing and reading, there can also be a slowing in your cognitive ability which makes it harder to find words and type.
I don't know about dizziness, hopefully someone else can advise but it may be worth asking the doctor about any drugs you are on and their side effects.
Please consider how you will manage in the future and start planning accordingly.
Sorry if this answer is not very comforting but I hope it helps 🫂
Thank you so much. It is wonderful to hear from someone else. Yes I am planning and yes I hav e all of the above. Doctors don't seem to know when I ask. 4 years of deterioration and NOW I get a few answers Thank you. I shall keep trying to find our about the dizziness.. So glad to have found this forum and get more knowledge. One of my doctors still doesn't believe it. But 3 neurologist and my GP do so there. |I'll get advice here
Hi Rockland73, dizziness can be due to an inner ear infection, please check this out with your GP. This was the cause of my wife's (PSP) dizziness. After treatment it did not return.
I had my ears checked and an mri for it and he said no nothing is wrong but the symptoms are just like an inner ear problem. I shall persevere. Thanks again.
I’m sorry you are dealing with this. My late husband complained of dizziness throughout his illness, which we are 99.9% was PSP. Nothing helped it and I assumed it was connected to the vertical gaze palsy or dysfunction— inability to move eyes up and down— that defines PSP. I hope you have plenty of support. Again, progressive brain disease is a merciless and I’m sorry.
Dear rocklady73, you sound like me.! .I’m also 76 and was diagnosed two years! Fortunately My husband is my carer, he has learnt to cook and does many wonderful things around our bungalow! He’s become our dogs favourite person as I can’t do the main things anymore!!
Hi! I think dizziness is par for the course with psp. Lots of experts don’t call it dizziness, but a combination of balance and vision problems- it amounts to the same thing! Sorry!
I agree it sounds like PSP and it sounds like you have been coping very well and put in place adaptations to help keep you mobile, please keep on with that. Do you have access to neurophysio - or perhaps a BIG course - aimed at exaggerating the size of movements to counteract the tendency to take shuffling steps and losing dexterity - some PSP patients find it helpful.The micrographia was an early symptom of my husbands PSP - he was still working but could no longer jot down a message or a phone number and had to record calls on his phone. This is also common in Parkinson's disease, so not unique to PSP.
I don't recognise dizziness amongst my husband's symptoms - his falls are related to how he balances i.e. he doesn't quite control posture and movement. His movements don't start and stop at the right time because the brain cannot control it.
As dizziness can have many causes and some are treatable I would perhaps get that checked separately?
So sorry to hear about your dizziness on top of everything else. Have any of your doctors considered viral labyrinthitis? Big hugs and best wishes, Purrlie
Poor you ..... Today my dtr took me out and I was car sick, so it seems damn hard to escape from all these discomforts! .....five years ago I was diagnosed with PSP, and. the clinching evidence was when the humming bird pattern' showed up on the MRI. Deterioration varies widely with everyone, so not poss to predict. But there are 10 'phenotypes'alLwith different rates of decline. I will send you 7 pages of different info if you trust me with ur email address.Anyway good luck and best withes. TimbowPSP
Hi As others have indicated I think you have PSP, sorry. I was diagnosed with this terrible disease some 5 years ago and my main symptoms are falls, poor balance, handwriting very small, micrographia, speech, swallowing and vision issues. . I too have progressed from a walking stick to a rollator, but even that isn't working out all that well anymore as I fall daily, often more than once.
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Is this normal? Am I expecting too much?
I lossed my husband and best friend. Really going to miss him
Hello, I am new
I am new here.
hello I am the wife of a newly diagnosed husband joining your lovely supportive group.
