Should PSP be given a simpler name?

[alfiro72]

Hi There

I hope you don’t mind me contacting you with this enquiry.

It has often occurred me that PSP lacks support and recognition due to the complex name of the illness - it remains a medical term difficult for the average person to understand and is also a mouthful.

I lost my mother to PSP in August 2013 and feel that trying to discuss this illness often results in a blank expression and people sometimes switch off more than they would if i mentioned breast cancer or Parkinson’s.

I feel the name really only means something to those who have been directly affected by the illness . I wondered if the issue has ever been raised and how I could go about finding out more. I feel it makes raising awareness for individuals as well as PSP Association more difficult than it would if it was renamed to something more simplistic.

Any information/ opinions would be appreciated.

Your Sincerely

Ros

[easterncedar]

The question has come up on this site a few times in the past. Many folks agree with you, but how would one go about changing the name?

[Robbo1]

I think PSP is alright as a name, the trouble is, no one knows what it is, even many doctors. Our Parkinson's Consultant would not accept that my husband had it for about 2 years .I had read about the disease and was convinced it was PSP. Eventually, he did an MRI and found that it was. I have sent emails to our health Minister, asking that all GPs be made aware of the disease and the guidance provided by the PSP Association. So far, I have had no reply. What can we do to make the illness more prominent, so when we say, "PSP" people will understand, as they do when we say, "MS" ?

[Amilazy]

Hi I understand PSP is a difficult thing to get across but there are many conditions more common with longer medical terms. I like PSP as a term compared to the old tag Stele Richards Syndrome. I think the problem that until recently it was assumed to be very rare but as scans have improved and Parkinson's narrowed more PSP sufferers are being found I believe as more medics come across the condition more research will follow and a higher profile similar to MS and MND. At present we need to ensure as many professionals, friends and family know about PSP. The snag with PSP is that it forces the sufferer and carer away from society unlike MS and MND where sufferers can communicate and operate well into the final stages of the illness while PSP robs the individual of communication early.

My thought is keep the name but push it more in communications.

Best wishes Tim

[Heady in reply to Amilazy]

Hi Tim, you are right, we are forced away from normal life. S is not happy eating out anymore, not happy about eating or drinking full stop! He certainly is not pleasant company, if I do take him out for coffee, or lunch! Either, choking and spluttering food or drink everywhere, or just sat there with his mask on, looking so miserable, I wonder why I made the huge effort!

Lots of love

Heady

[shasha]

I ALWAYS SAY THAT I SUFFER FROM PARKINSONS PSP, WHICH IS WHAT MY NEURO TOLD ME IT WAS =]AT LEAST THEY THEN PICK UP ON THE PRKINSONS BIT AND THEM IF THEY WANT TO KNOW ANYTHING ELSE ABOUT PSP I THEN TELL THEM....

[abirke]

The name is a mouthful, but like the easily said and even more easily identifiable cancer or Parkinsons. PSP is not common enough for many to relate to. I do not feel it is the name itself that deters people interest or concern. You've had a long time to think about this and maybe you have a wonderful way that will open this disorder to the mainstream...If you do more power to you get it out here to get the cure in there (the affected brain)

AVB