How do you describe your PSP or CBD?

[HelenPSPA]

Do you say it is a

Neurological condition

or a

Rare brain disease

[Hidden]

I just say psp and when they look confused I explain what it is.

[Kevin_1]

Degenerative neurological condition affecting the brain.

[enjoysalud]

A horrible rare neurological disease...........my son at the end could not see, walk, lost control of all his bodily functions, his speech was gibberish, and could only communicate with pointing, writing on my hand and YES/NO questions.

[raincitygirl]

Rare Neurodegenerative disease/disorder (CBD)

Anne G.

[Dadshelper]

Degenerative Progressive Neuro disease in which parts of the brain die off resulting in loss of mental and physical abilities.

Ron

[LuisRodicioRodicio]

The term "PSP" includes a set of clinical subgroups (PSP-RS, PSP-CBD. PSP-P, PSP-GF, PSP-FTD, PSP-OM, PSP-PNFA. PSP-C, PSP-SL and other unrecognized forms), variants of a rare progressive neurological disease called "Progressive Supranuclear Palsy".

[LuisRodicioRodicio]

A definition according decs.bvs.br :

PSP is a disease of the central nervous system characterized by difficulties in balance; OCULAR MOTILITY DISORDERS (supranuclear ophthalmoplegia); DISARTRY; swallowing difficulties; and axial DISTONY. It usually begins in the fifth decade and the progression of the disease occurs over several years. Pathological findings include neurofibrillar degeneration and neuronal loss in the dorsal MESENCÉFALO; SUBTALAMIC CORES; RED NUCLEUS; pallidum; serrated core; and vestibular nuclei.

[HilsandR]

I gave up trying to explain to family and friends about my late husband's PSP as was usually met with a blank stare. So, I eventually described it as the 'Ugly Sister' of Parkinsons, which most people have heard of, whereas not one of them had ever heard of PSP. HilsandR.

[AJK2001]

A rare neurological condition that effects everything, particularly the messages getting to muscles, so movement, eye sight, speech, swallowing/eating, breathing. But though groups are difficult for someone to follow, cognition is still there, but slow.

I found alot of people used to think Mum had had a stroke and wouldn't talk to her but ask me how she was. Used to annoy me, I always brought her into the conversation.

[Doublereeder]

A neurological disorder, a rare Parkinsonism which is, unfortunately is degenerative and untreatable.

[daddyt]

I've done this poll already. The short answer... Rare brain disease. The long answer... not enough words to describe it.

[Sebuly14]

Rare degenerative brain disease with no treatment.

[Railfan]

A rare neurodegenerative brain disease.

[Cinnylou]

Depending on who I was speaking with decided how I described my husband’s CBD. Short story was that it was a rare brain disease with no cure. If they grasped that and asked more questions I would go into the havoc it wreaked with all of his movement disorder symptoms and how it shared some traits with Parkinson’s disease but that it WASN’T Parkinson’s. And if they really seemed interested in the scientific part of it (like the veterinarians I work with) I would explain about the tau proteins and how they went awry.

[SewBears]

I answer the question quite poorly. Get tongue tied and I usually end up saying something along the lines of “his brain is slowly being erased and there’s no cure”. The more bizarre the answer, the fewer questions are asked. I know that I’m missing an opportunity to educate people but I don’t think that they are really all that interested. Or, perhaps it’s a coping mechanism for myself to not have to explain it.

[Kmacgamwell]

I call PSP and ugly cousin of Parkinson's that has no cure.