PSP

[Boyce3600]

If you have any first hand info about this condition other than the basic internet info or know someone living with this, can you share anything about the visual symptoms?

[Richanne]

My husband was diagnosed with PSP in April 2015 but probably suffered from it for about 5 years earlier. (First backwards fall in 2011). I started noticing strange gaze about a year ago and it is quite noticeable now. He often has a fixed upward gaze when relaxed such as travelling in the car or in his chair at home. He never looks at his food when eating, to the extent that you might think him blind. He feeds by feel. And i have to guide hus walker or he bumps into things. He commonly doesnt look at people talking to him though he can do so. If he's cross with me he will look directly at me!!

That's all I can think of at the moment. What is your experience?

[Boyce3600 in reply to Richanne]

I know there is a way tp personal message just one person on this site. If i can figure it out would you mind if I did that ?

[Richanne in reply to Boyce3600]

Of course not. I don't know how to do it either. It's not very intuitive I find.

[Richanne in reply to Boyce3600]

It seems you click on your profile at the top of the page and the drop down menu includes message. You then message just the one person (OR several named) so it looks as though posts are broadcast and messages are specific

[Boyce3600 in reply to Richanne]

Hmm i did that and sent you ( thought I did) a looong msg this morning. Did u not get it

[b3904 in reply to Richanne]

my husband just passed away from PSP. he lost his sense of balance and fell frequently. he had trouble eating and swallowing, couldn`t talk at the end . also vision problems. very rapid end to a disease that probably showing symptoms 5 or more years ago

[Boyce3600 in reply to b3904]

My sincerest condolences. Thank u for replying. This is extremely hard. I understand.

[Tamarisk]

What is PSP?

[Mnd0vrmnky in reply to Tamarisk]

Progressive supranuclear palsy. Dudley Moore died from it. It affects your eye movement, balance and swallowing mechanism.

[Alwarid in reply to Mnd0vrmnky]

That is the common definition of pep.My daughter happened to be near where there was a Comference about PSP and she found the Seminar very useful.Please check the Web for PSP.

[Mnd0vrmnky]

There is a psp association section on this forum. Lots of ppl to talk to.

[Boyce3600 in reply to Mnd0vrmnky]

I will check it out and thanks

[Tamarisk]

Thank you, so does this mean you can have both PSP and Parkinsons, and how does one tell the difference?

[Boyce3600 in reply to Tamarisk]

I have that same question

[redread in reply to Tamarisk]

Neurologist thought my husband had PSP because the Parkinson's he was fisrt diagnosed wasn't conclusive. After a few months the neuro decided that the PSP symptoms were not "progressing" quickly enough so he backed off that diagnosis and reverted back to "non typical Parkinson's. So the difference between the two appears to be the rapid progression of PSP symptoms.

[Boyce3600 in reply to redread]

May I ask what the supposed PSP symptoms at that time were?

[redread in reply to Boyce3600]

That was in 2010, at Johns Hopkins Medical Center and I'm not sure just why the neuro decided in favor of PSP rather than Parkinson's. My husband had NO tremors, but did have other Parkinson's symptoms and did not respond to Sinamet. Just not sure what prompted PSP diagnosis. Hubby passed away last year from cancer.

[Boyce3600 in reply to redread]

Oh goodness I am so sorry about that. Many thanks for taking your time to reply.

[Tamarisk in reply to redread]

Sounds about right for a neuro, early on one decided because my husband was not shaking at the appointment, 1hour after taking sinemet that he did not have PD took him off all medication, saw him 6 weeks later, saw the state he was in and said, you have Parkinsons go back on your meds, 6 weeks on hell for us.

I do wonder what training some of them have!!

[redread in reply to Tamarisk]

I have read the blogs and believe that much of the confusion relates to the fact that no tests for this disorder exist, only symptoms. Symptoms present differently from one individual to another and they can change in each individual. Very frustrating.

[Tamarisk]

To message direct to a person tap their name it goes to their page and you will see a message tab to use

[Boyce3600 in reply to Tamarisk]

Thank you

[arwenmark]

Often people are diagnosed with Parkinson's and later as more symptoms appear it is changed to PSP which unlike Parkinson's is fatal.

Visit the PSP forum on Here, HealthUnlocked.

[Alwarid]

I was diagnosed with pap by my neuro(Dr.MCewan at the movementioned disorder Clinic)it isa charachetorised by many falls .I had to go to Emergency to deal with my last fall.the young doctor gave me morphine pills to tolerate my broken ribs,but that only caused me more constipation