Question for the message board.

I'm new to the Dx of PSP. Is CBD in the family of PSP?

[arwenmark]

In the family? yes, the same? No

[Hidden in reply to arwenmark]

Thank you.

[Kevin_1]

Hi Kathy

As folk have said related, but different.

Same neurofibular tangles and Tau protein plaque formation (I'm giving you thse words so You can Google them).

However the key areas of the brain affected are different, to some degree and so the progressive loss of functioning is broadly different.

Do remember these are labels on boxes. A clinician would qualify the diagnosis with finer descriptions qualifying the diagnosis. So it is unsafe to read up on CBD and assume that is what a particular patient will suffer in terms of symptoms and progression. Each diagnosed person will have some symptoms and not others.

This may help:

pspassociation.org.uk/for-p...

I believe the PSP Association now covers CBD fully - they just haven't changed their name... And they are superbly well informed and helpful. They are also accessible - Give them a call if you want.

And, hello? Dx?... We don't use that language here. Everyone understands the word diagnosis though... Chuckles.

I didn't notice the 'Dx' until the end of my post so part of my post might appear patronising if you are a medic. Sorry.

Best to you.

Kevin

[Hidden in reply to Kevin_1]

Could you give to me the entire web address.

[Kevin_1 in reply to Kevin_1]

Hi

I have.. The forum tech. truncates it, but it is a live link.

Just click on it.

I do hope this link helps.

Best

Kevin

[Hidden in reply to Kevin_1]

No, not patronizing at all. Kinda funny. I've been in the nursing field so long, it's hard to change my medical jargon. I'm a dinosaur, of 57, hard to break old habits, like using Dx, Sx etc. Thanks

[Kevin_1 in reply to Hidden]

No worries...I was just sharing a chuckle

Glad you have taken the trouble too.

(Had you down in my mind as an SHO... One must always school them little, as I am sure you do)

[Hidden in reply to Kevin_1]

Yes, I have done extensive reading on the tangles and the tau proteins. Until recently, within the last three months, I had never even heard of this condition. (Notice I didn't say Dx.?)

[Kevin_1 in reply to Hidden]

You're a Neuro nurse? Taking my hat of to you.

I do hope you have not had this damned illness come into your personal sphere.

Oh, I do wish I hadn't mentioned Dx... Slapping forehead.

I am strictly a carer struggling to keep up with some of the basic clinical info.

There are a lot of (very on the ball) folk here who have seen the illness close up throughout its progression. The quality of info and symptom management is very high indeed.

Not really that surprising when you think they are funnelling information from X number of tertiary level neurological teams from a number of countries, inc. Consultants , nurses, OTs, Physios and all.

Be well

Kevin

[Hidden in reply to Kevin_1]

I don't have it, but I have a patient that does. And since not much is know about, I have been searching and finding any and all literature I can find. Where are you located, here in the states?

[Kevin_1 in reply to Hidden]

Hi Kathy

Apologies for the slow reply. Things have been busy here.

No, I'm in the U.K.

I wish all clinicians we dealt with were as thorough as you.

Wishing you the best

Kevin

[abirke]

Do you or a loved one have CBD or PSP or are you just interested being in the field and all?

[Hidden in reply to abirke]

Yes, I'm a nurse and I do have a loved one with PSP and possibly PBA. I am reading, scanning and Googling everything on the subjects of PBA and PSP that I can get my hands on. This condition is so rare, to find the literature on it, turns into a scavenger hunt. I love my job. The the more information I can find and read about, the absolute best care I can give to my patient. Knowledge is power.

[abirke in reply to Hidden]

forgive my ignorance , but whats PBA?

[Hidden]

PBA is PseudoBulbar Affect. It's a condition which causes sudden, frequent, often and uncontrollable bouts of crying and/or laughing which is not how he/she feels inside. It's a very distinct condition that affects someone with a neurological or a brain injury.

[abirke]

interesting in that some PSP folks will experience outburst of anger or laughter or crying.....my husband had the latter he would laugh at the stupidest stuff uncontrollably and if we watched a sad movie.......oh my goodness that man could make it so much more sad with his weeping.....

[Ettavb in reply to abirke]

My mother (CBD) laughs - which is about the only symptom we kind of enjoy. (Only occasionally is the laughter inappropriate.)