CurePSP Summer Newsletter Out Now

Aug 23, 2022 By Oscar Sullivan

The latest CurePSP Connection newsletter gives an update from Dr. Kristophe Diaz on the allocation of your funds, a Q&A with Centers of Care Director Jessica Shurer, the latest on tau research from Dr. Rik van der Kant, reflections from Sanjay Geevarghese, a teenage carepartner, as well as a poem on gratitude from Diane Deaver, a resilient PSP patient.

 

Gratitude and PSP

 

Progressive Supranuclear Palsy

The doctor said to me

It’s a rare disease; it’s also known

By its nickname PSP.

 

You may have trouble walking

You may sometimes even fall

If you do, you may fall backward

You may bump against a wall.

 

You may suffer some confusion

By forgetting many things

You may feel you’re disappearing

By the sadness that it brings.

 

It may affect your vision

Changing how well you can see

Your hands may feel real shaky

When you hold a cup of tea.

 

You may find it hard to swallow

When your tongue gets in the way

You may feel some deep frustration

With your symptoms every day.

 

But life can still be meaningful

Life can still be sweet

Feel joy where you can find it

Embrace life now, don’t retreat.

 

Diane Deaver, The PSP Poet

©2021

 

Check out the full newsletter as well as previous issues here.