Stages of PSP and standards of care_v1

[LuisRodicioRodicio]

I think having a PSP disease roadmap, even if it is rough, can be useful.

The idea and the bulk of the information that I show below I have found in the documents of the association "CurePSP".

My proposal is that the caregivers of the "PSP chat" of HealthUnlocked can contribute to improve this first version.

Note.- All PSP patients seem to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

Hug and thank you.

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Stages of PSP and standards of care_v1_2018-01-07

(Mainly based on CurePSP information)

Early Stage (Including diagnosis)

(Years 0-1)

- Walking but falls occasionally.

- Difficulty reading due to gaze palsy.

- Mild vocal changes such as quietening of voice or difficulty in vocalization.

- Changes in mood.

- Reduced social interaction.

Mid Stage

(Years 2-3)

- Walking with aids.

- Limited eye movements making eating and walking more difficult

- High risk of falls.

- Speech difficult to understand.

- Change in handwriting to very small and messy.

- More impulsive behaviours.

- Marked apathy.

- At risk of choking.

- Requires a high level of supervision.

- Lack of response to PD medications.

- Vertical Gaze Palsy.

- Backwards Falls

Advance stage

(years 3 – 6)

- Highly reduced mobility

- Severe muscle stiffness

- Requiring a wheelchair.

- Severe communication difficulties including lack of expression.

- High risk of aspiration and pneumonia.

- Pain and periods of sleeplessness

- Blepharitis.

- Functional incontinence.

- Severe social withdrawal.

End of life Care

(last 6-8 weeks)

-Severe impairments and disabilities.

-Rapid and marked deterioration in condition.

-This stage is usually triggered when a decisión not to treat is made, in accordance with the individual´s wishes.

-“Not to treat” could include inability to eat and drink in absence or refusal of a PEG or RIG, infections that would require hospitalisation, etc.. Decisions made in light of advance directives, preferred priorities of care and in best interest.

[JR61]

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

Follow this link on this website for further advice, I have found the PSPA in the U.K. to be an excellent source of information for carers. Even reading the resources for professionals is helpful for family and friends. There are also resources for you to keep your GP etc up to speed. Ruth x

[LuisRodicioRodicio in reply to JR61]

Thank you Ruth.

Hugs

Luis

[raincitygirl]

Good luck with this Luis! I think CBD is slightly different, so I won't comment as its a PSP map. Good thing to give one a sense of "where" they are.....

cheers!

[Dickwin]

Thank you for attempting this Luis. As many have noted, this disease can be quite variable. My wife is 52, and was re-DXd with PSP only 6 months ago, but was diagnosed with PD 2 years ago, and has had symptoms for 3 to 4 years. She has no Gaze Palsy (the most common first symptom) but has severe blepharospasm, very bad gait freeze, highly reduced mobility, speech and writing issues, frequent falls when not using a walker, and will be primarily wheelchair bound far sooner than we had hoped. It is an incredibly variable disease, but all patients end up in the same place. Your attempt at a rough outline is as good as I have seen and much appreciated.

[LuisRodicioRodicio in reply to Dickwin]

Thank you for your contribution and your words of encouragement.

Hugs.

Luis

[ketchupman]

Excellent! Probably could add a few more items. Such as when they start having motor vehicle accidents and when they must stop driving (ie. once they’re diagnosed). For my wife, the incontience started much earlier, like in year 2-3 of the disease. And constipation got pretty bad during the final 2 years. Another post that I just reposnded today was about their inability for them to hold their heads up. Typically during their last year of life, they have difficulty holding it up. In their final weeks of life, their chin is practically touching their chest. There are also a lot of different stages around the eyes that can tell you where they’re at in the disease. Ie ability to keep both eye lids open at the same time or even one open. Thanks for sharing.

Ketchupman

[LuisRodicioRodicio]

Thank you "ketchupman" for your contribution and your words of encouragement.

Hugs.

Luis

[Cwolpe]

Im really glad you did this. It helped sooo much. And I think having the care givers chime in on this specific disease is the best reseach your going to get.