Diagnosed with PSP 6th Jan 2015

Just over 3 years ago I seen a neurologist who suspected I had MND. Recently had a Dat Scan followed by an MRI and Spect Scan as my illness wasn't following the usual pattern of MND. I was told it was PSP last Tuesday. The only question I have after researching PSP is that all my symptoms fit other than I haven't had any backward falls as yet. As this seems to be an early indication of PSP I am now starting to think could it be something else. If you look at most of the degenerative neurological disorders they all seem to fit under 1 umbrella. I want to praise the support I have received from all the staff at Sheffield Hallamshire Hospital who work really hard and under some pressure, so as I leave the MND forum I will now be taking a close look at the PSP forum

21 Replies

  • My husband has had PSP symptoms for over four years but he does not fall over backwards. He has a tendency to fall backwards into chairs and onto beds and is getting progressively worse as he becomes unsteadier on his feet. He also stumbles over his feet or undulations in floor surfaces, but seems to lurch forwards rather than backwards.


  • If there is anything I have learnt about this wretched psp illness it is that it is so variable, my husband falls anyway, any direction , he does not have the eye movements so often ta liked about on here, he seems to have a title less understanding than some, leaning to slight dementia. It's all so utterly bewildering but you can glean lots of help from this site and all the cheerful folk who contribute.

  • Some experts believe the falling backwards is a 'myth,' as it does not happen in all cases, only some. Although doctors aren't always right, they must have based their assumption on something such as scans and symptoms.

    I can't imagine what it is like to live with your condition-having it 24 hrs a day and I lost my mum to msa 4 months ago. She was an absolute inspiration-she was always smiling,

    Always wanted to see family and always wanted to get out in the fresh air.

    We all never know how long left we have, so please enjoy life as much as you can and I sincerely hope your family give you every ounce of love you deserve!

  • Backward falls were not a feature of my wife's symptoms but PSP was confirmed postmortem. I too hope you get all the help you need and if possible get it in place a bit before you need it, some things take a time to source.

    Best wishes, Jerry.

  • Hi allany

    My mother was diagnosed 2 and a half years ago approx but probably had symptoms for several years before that. Her balance was affected but not necessarily falling backwards. Unfortunately, she fell in all directions! What I have learned from this forum is that sufferer's symptoms vary quite considerably and as previous replies suggest, getting help is really important, as is enjoying life. Hopefully this forum has also provided lots of advice. Good Luck


  • Allany, my husband was diagnosed in 2014 although looking back I think symptoms were present 3-4 years previously. He also does not usually fall backwards when he looses his balance. He does not seem to have the vision problems identified with PSP either. However he certainly has the balance & gait issues, apathy, and irritability otherwise identified as PSP symptoms. So I believe symptoms can vary widely from one person to the next. Not everyone experiences everything in a given order.

  • best way I can describe it is poor balance. like I am walking on slippery wet floor. But I just grab something or hold on to the back of a chair and I don't fall down very often. I am lucky that way. it seems to me to be related to my eyes are not adjusting fast enough. look one way then look another a few times and then I am diizzy with poor balance But I am NOT spinning. in the yeears to come it will get worse I believe.

  • Thanks for all the responses to my query.

  • My husband does fall backwards. That was one of his first symptoms. Now his balance is very bad and can fall any which way but falling backwards is definitely something of a concern with him.

  • My dear wife did not have backward falls but did have PSP (autopsy report). She only had a sense of imbalance and only one or two falls and not backwards. PSP is NOT a one-size-fits-all disease and each patient is different. I've logged 34 symptoms that many PSP patients face but that my wife did NOT have. You really can't gauge your progress by that of others. You shouldn't worry about symptoms you may never get. Hang in there and stay strong. Jimbo

  • Thanks for that jimbo

  • Hi & welcome. My dad (82) has had several (mainly forward) falls, walking bent over his 'rollator' (walker with wheels). So, maybe your diagnosis is correct, maybe it isn't (I sincerely I hope it isn't!). He was diagnosed 18 months ago after various other attempts at diagnosis (epilepsy, Alzheimer's, Parkinson's) during the previous 2-3 years. There are many other symptoms: problems walking, talking and swallowing, and fine motor skills - but not everyone has all of them. There is a lot of really good (and sometimes very funny too!) information on this forum. I'm glad to be part of it. Take care.

  • Hi my mum had a couple of falls but never backwards x

  • Hi my mum had a couple of falls but never backwards x

  • Hi my mum had a couple of falls but never backwards x

  • My husband falls every which way. His muscles are still strong as we go to the gym three times a week for water therapy where he does the BIG exercises taught by the Parkinson's folks. In the pool. He was diagnosed in May 2013. His symptoms began about 2011. His eyes do not focus well either, and we're weeping a lot but now the doc prescribed some allergy drops and the weeping has stopped. He is taking antidepressants but, I'm afraid he's still irritable and that makes me sad. He says he doesn't like to smile as his face is now lopsided. I miss those smiles, lopsided or not.

  • so sorry to hear.. last year I was afraid I had MND. they now suspect PSP I don't know which is worse but they tell me it's not life threatening which is some comfort as have been all replies I have had from this forum

  • Not so sure there is much difference in any of the degenerative neurological conditions myjual. Yes MND is probably the least of choice but I have witnessed people with MND living with little problems for years. As there is no cure for PSP it seems to me you might live longer but in what state is yet to be seen. I remember my specialist telling me just live your life to the full while you can and that's what I plan to do.

  • my husband has only ever been diagnosed with Parkinson's . I have often asked if they are sure it is or something similar . he doesn't fall anymore but only because he is now chair or bed bound ,

    whn he did fall it would b either because his legs wouldn't support him , his knees would crumble beneath him as he pushed himself to walk . he is a very stoic man . or would fall backwards or forwards .

    any of the MEDS prescribed have never helped in any way . I sometimes thing they made it worse . catch 22"

  • Problem is that these illnesses seem so difficult to distinguish between cabbagecotage

  • I have only had 2 falls and was diagnosed psp 2 year ago put I can not walk so fire and rely deeply on, my wife for ballance, I try at times to go out for a small assisted walk as she says to free me up put night times are bad I dont know where to put my self