Gwen’s Life

This is a daily record of the Gwen’s PSP journey starting on April 19,2025. I wish I had started this record sooner but one can’t go back in time, just do the best one can going forward. I’ll try my best to sit down every night for 5 minutes and record the day if there was something out of the ordinary.

The Past

Gwen was diagnosed with Progressive Supranuclear Palsy (PSP) in 2018. The first symptoms were writing certain words with her right hand.

PSP is a rare brain disorder that affects movement, balance, eye movements, and cognitive function. It causes a gradual decline in brain cell function. PSP is often mistaken for Parkinson’s disease in the early stages, but it progresses more rapidly and can cause unique symptoms like difficulties controlling eye movements and frequent backward falls.
The most significant event since her journey started was January 25, 2023 when she fell while walking around NorthPark and broke her kneecap.

I am her primary caregiver which is a full time and more job. I do have an aide that helps out several days a week
Over time her symptoms worsened gradually. At this point in time she is wheel chair bound, non-verbal, and almost paralyzed. She has a catheter because she can no longer urinate and has had a UTI since January 12, 2025.

The Journey

  • 4/19/25, 7:58 AM- Yesterday Gwen was in a lot of pain. Therefore, we booked a doctor appointment where they confirmed she still had the UTI going on since January. They prescribed an antibiotic which I picked up and gave her the first dose. She is still sleeping this morning as I write, but she filled the catheter bag last night which tells me the catheter tube must have been semi stopped up and the antibiotic must already be working to allow her bladder to flush.
  • 10:03:14 PM – Slept almost the entire day. For now I’m assuming she is recovering.
  • 4/20/25, 8:31 AM- Gwen woke me up a few times during the night. I’m not sure how much she slept last night. Now asleep in her wheelchair after some breakfast.
  • 2025-04-21 11:54 – Made appointments with Dr. Rogers in Roanoke to make her our primary care doctor**
  • 2025-04-23 06:41 – Up at 5:40. Gwen is already awake so I got her up as well. She woke me up several times last night making noises. I’m not sure how much she slept if at all.
  • 4/23/25, 9:33 AM- Gwen choked on a piece of toast and could not breathe. Fortunately, we were able to get her to cough it up.
  • 2025-04-25 18:39 – Gwen had her appointment with Dr. Lemack today. The primary purpose was to find out what we could do about the UTI she has had since January 12. 

His recommendation: Women with a catheter often have permanent UTIs. Quit taking antibiotics because they rarely cure the problem and it’s not healthy to take antibiotics long term. Either live with the UTI or have the procedure for Suprapubic Catheter.
  • 2025-04-25 18:43 – Gwen had massive diarrhea this afternoon.
  • 2025-04-27 21:45 – Gwen slept almost all of the day today. Maybe the worse day ever

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