Is there anybody on the site suffering from psp pagf. It appears that the only form of psp that neurologists can diagnose is Richardson's. My friend has been told he has atypical Parkinsonism. From what I have read on line I think it is psp pagf. His main problem is his mobility, gait freeze, his writing is much smaller and his voice softer. He is able to look up and down but hardly blinks. He doesn't have a tremor and Sinamet doesn't seem to help.
The only way to know which neurological disease one has is a brain biopsy after death. PSP PAGF is new to me. There are so many variations on these diseases.
Thanks for your reply Jeff. All the best x
Hi Fashionable. Welcome to this forum!
What do the letters 'PAGF' stand for? They are new to me too.
My husband was diagnosed with CBD (corticobasal degeneration). He also had reduced mobility, gait freeze, smaller writing, and softer voice. Neither Sinsmet nor Madopar, prescribed initially for suspected Parkinsons disease, did not have any effect either. This is an indication that he was not suffering from just Parkindons disease.
Whatever your friend's symptoms are, they will most likely come from reduced brain activity.
On this forum, the general advice seems to be to manage the symptoms as they occur, to keep as physically active as possible, put in place powers of attorney, plan for the time when more home help is needed, and get a support group together so that the carer can get periods of respite for carer's wellbeing and recovery.
Progression of the disease is dependent on the individual. They may become bedridden, and have difficulty swallowing,, may need to consider tube feeding (PEG) through stomach wall, or there may a sudden event that supersedes all or any of these events. Although the patient may be unable to communicate and may seem emotionless, more often than not, they can understand all that is happening, so it is important to give them hugs and affection and talk to them as normal.
There are threads on here that talk of experience using CBD oil (csnabidiol). This may be available depending on where you live.
Hope this helps! I think the most important thing is to accept it is a brain disease and that it is progressive, to, get help to manage the symptoms, and above all, to understand that the loved one is still there although responses may be reduced, and to give love and understanding!
Hugs
Jen xxx
Thanks Jen.
All the very best. Hugs
Fash xx
PAGF stands for PURE AKINESIA WITH GAIT FREEZE
Survival from symptoms onset11 y. (years)
PSP - GF (PAGF)
tipes of PSPProgressive Gait freezing
(during + 3 years.) (4)
% of all PSParound 1%
Symptoms
small amplitude
Bradykinesia (1)without decrement
Feet "stick" to floor
Ataxia (6) -
Rigidity(may appear 5y. later)
Axial > Limbs
Auditory blink reflexpreserved
TremorNo
(may appear 5y. later)
Unprovoqued Falls within 3y.No
Eye movementNo
abnormalities (3)(may appear 5y. later)
Cognitive Decline - DysfunctionNo (may appear 5y. later)
DepressionCan occur ---> Frequent
Response to LevodopaNo
Others"Hypomimia, Hypophonia, Micrographia / (4) Gait disorder years before
development of other PSP-RS features."
I can send by email a comparative table (xlsx format) between the different types of PSP.
To do this I need, by "PRIVATE MAIL" of HealthUnlocked, an email address.
I recommend NOT to publish your email address in this chat.
Hugs
Luis
This is what I’ve been diagnosed as having. I usually just say I have PSP because PSP-PAGF is quite a mouthful 🥴. The symptoms you mentioned are all the same as I have. In fact, the teeny tiny handwriting was my first symptom.
Pain with PSP
PSP and Hydrocephalus
PSP Newbie
New here Dad just dx with PSP :(
Delayed psp diagnosis 
