Found a old posting,worth a re read

StrelleyHidden 4 years ago 25 Replies

Recently on this forum, a few have mentioned how caring for their loved one with PSP is somewhat like caring for a child. I thought I would make a quick list of some PSP symptoms that might reflect this idea.

Child: will attempt to stand and fall, often backwards on its bottom.

PSP: tendency to fall backwards; also "flop" on their bottom into chairs. (My wife fell on her bottom and fractured her T12 vertebra)

Child: starts to walk with a (wobbly) gait and short faltering steps.

PSP: walk with a wide clumsy (staggering) gait - "drunken sailor syndrome"

Child: often sets off to walk slowly, then speeds up and often falls.

PSP: often rises and bolts forward (rocket sign) or walks slowly and then speeds up ( also termed motor recklessness), sometimes resulting in falls.

Child: cannot eat solid foods; sometimes spits/coughs out food (swallowing reflexes not fully developed). Left alone may put too much in mouth. Spills down bib.

PSP: often cannot eat solids, must be pureed; sometimes spits/coughs out food ( nerve damage controlling swallowing/mouth muscles). Often fills mouth too much. Spills down clothes/bib (called "dirty bib/tie syndrome).

Child: drools excessively

PSP: some will have excessive saliva build up (and drool)

Child(baby): has some involuntary (hand/limb) movements .

PSP: may show (motor perseveration and/or apraxia) the "applause sign" ( *see end of this post for this test).

Child: initially makes noises, not words (soon learns words)

PSP: makes noises, moans, hums etc. (will have difficulty finding words)

Child: cannot write and learns slowly often with large letters

PSP: loses ability to write, initially with small uncontrolled and sloping lettering (micrographia)

Child (baby): grasps hand (holds tightly to parents fingers etc)

PSP: grasp reflex damage with exaggerated holding onto objects (try taking away my wife's TV remote or spoon when feeding!)

Child (baby): difficulty in fixing eyes on distant object.

PSP: eye problems include fixing on distant objects (and moving them up and down).

Child: often irritable (later demanding)

PSP: some become irritable and demanding

Child: no bladder or bowel control

PSP: some lose bladder and bowel control (whether retaining or uncontrolled releasing)

Child: Sleeps a lot (babies: may wake often during the night)

PSP: Some sleep most of the time if allowed (some wake constantly during the night)

Child: Easily tires

PSP: Fatigue is major symptom

Child (newborns): unable to regulate body temperature easily (sensitive to temperature changes)

PSP: some (having autonomic dysfunction) will have poor temperature control (sometimes-hot sweaty faces and cold legs)

Child: easy to make them laugh and cry (sometimes uncontrollably)

PSP: often suffer from pseudobulbar affect of excessive inappropriate (out of place) laughing and /or crying (emotional incontinence/lability)

Child: knows nothing of modesty (also unable to clothe themselves)

PSP: some have a decrease in modesty (also lose functions to dress themselves)

* Applause sign (test)

The applause sign refers to the tendency of some patients to continue clapping their hands in response to instructions to clap three times. Initially, the sign was proposed as a way to distinguish progressive supranuclear palsy (more than three claps, or a positive applause sign) from Parkinson disease (only three claps), although subsequently a positive applause sign has been noticed in many other Parkinson-plus disorders. To elicit the sign, the clinician asks the patient to clap three times as quickly as possible and then demonstrates the clapping. The patient’s response is normal if he or she claps just three times and “abnormal” if the patient claps more than three times. The exact cause of the abnormal applause sign is unknown, although many believe it could be related to frontal disinhibition (dysfunction of fronto-subcortical relays)

[abirke]

Wow that was a good read. I could actually see which part of the brain was being affected The fore brain being the first affected speech, sight, movement; The midbrain controls the emotional self....the cranky or the or the inability to stop weeping , (B was more the latter if he watched a sad movie) , and most definitely, apathy...though I must say that was one of the first symptoms; and making new memories...like "do I have the gas on the stove on?" and the ever progressive coordination dysfunction.

The last year of his life, I could watch B's executive functions (Hindbrain) slip away: swallowing temperature, rhythmic breathing, heartbeat. It was as if I were watching the last sand of an hour glass slip away....The brain is an amazing thing....Now If I could only kick my brain in gear !!!! I have been given the opportunity to live life and I'm sure if I get out of my pajamas I could really enjoy what the Lord has given me....

[Hidden in reply to abirke]

I was searching for posting on temperatures,my husband has been feeling warmer then normal and did have a slight fever showing around dinner time and then the reading went back to normal but he still feels warmer then he usually is.

Hate this darn disease.

Dee

[Marie_14 in reply to Hidden]

Dee have you tried a cold face cloth on his forehead? It always worked for my husband. Might be because I have always done that, so it's a comfort thing too?

Thanks for the great read too. It makes so much sense? Now if only they could find a way to reverse it?

Marie x

[abirke in reply to Marie_14]

Yah it's like pushing water back up the fall....but it would be sort of a place to start....I mean now that we can actually watch the progress, though not as cut and dry I'm sure,..maybe researchers could some how inhibit plaque formation in the neuromembrane that has not been affected....someday they will and soon we won't be dying of anything except boredom....haha

[raincitygirl in reply to Hidden]

BTW, hubby is always too hot, as well. All this winter: short sleeve tshirts & no socks by choice. A very thin quilt at night....

[Christine47 in reply to Hidden]

My husband went through a phase of being really hot. We found a product called frogg toggs®. He used a cloth that he just draped around his neck. Easy. Effective. At night he slept on a bamboo mat that a Chinese friend recommended. It allowed the air to circulate better and kept him cool at night.

[raincitygirl]

Thanks for this Dee. Heartbreaking but too true. A recent trip to a restaurant where much food ended up on the floor, agrees wirh this!

How do you find Strelley's old posts? I notice you long-timers always knew when it was him posting - even though he was always Hidden. ??

[Hidden in reply to raincitygirl]

Best you can do is search Strelley

[Heady]

I remember this post! How did we know it was Strelley. I don't know, to be honest, I never even noticed he was under a Hidden post. He was always full of knowledge and always seemed to keep his cool under the pressure.

Lots of love

Anne