This is the story of Gwen’s long journey with Progressive Supranuclear Palsy (PSP) which is a rare, fatal, and progressive neurodegenerative disease affecting walking, balance, eye movement, swallowing, and cognition. It’s the story of a precious mother, grandmother, and wife who faced the long slow progression towards her final breath with faith, courage, optimism and joy.
The Beginning
Gwen was not one to complain, so I am not entirely sure when she first noticed something was wrong. She eventually mentioned to me that she began noticing symptoms sometime in 2015. There were certain words she could not write, whether using a pen or a keyboard. As time passed, she lost more and more function in her right hand.
When reviewing her Sunday sermon journal entries, the physical degradation of her handwriting was apparent. To adapt, she had to switch to writing journal entries with her left hand later that year. While her entries improved significantly the first Sunday she switched, those entries began to degrade as well, revealing the gradual effect of PSP on her left hand. Her speech also started to be affected. We were, to say the least, concerned.
The Slow Progression Down Hill
Our first step was meeting with Dr. Wiprud, our PCP, who referred us to a neurologist. For the next three years, Gwen’s PSP slowly progressed while we were referred to a series of neurologists, many of whom seemed as perplexed as we were.
Gwen was initially diagnosed with Parkinson’s Disease, although none of the prescribed medications lessened her symptoms; instead, they caused nausea. The neurologists were also confused by her brain scans, as they differed significantly from a typical Parkinson’s brain scan.
Her symptoms included loss of hand use, slurred speech, balance issues, inability to focus, stiff neck and trunk muscles, inability to aim the eyes, no control of eye lids, and swallowing difficulties.
Gwen’s balance degraded as the years rolled by way too quickly. Her balance in particular proved to be a huge problem.
Throughout the entire years long ordeal Gwen was never, well almost never, depressed or down. She was always upbeat with a smile for others. I do remember two instances where she broke down in tears. In both cases she recovered quickly. In this regard she was much stronger than me.
Dr. Shakkottai interview:
After years of searching for answers, Gwen’s neurologist at BSW referred us to Dr. Vikram Shakkottai at UT Southwestern. When we met in 2021, he had already thoroughly studied her medical records and brain scans. Rather than asking Gwen questions, he began describing the specific problems he suspected she was experiencing. To each one, she replied, ’Yes, I’m having that problem.
After a dozen or so rounds with Gwen answering yes to all Dr. Shakkottai told us Gwen had Progressive Supranuclear Palsy (PSP) – a rare, progressive neurodegenerative brain disorder that causes serious, worsening problems with movement, balance, walking, and eye coordination caused by the buildup of tau protein, which damages brain cells controlling movement and thinking. There is no cure for PSP and no medications to slow the progression. Life expectancy is 5 to 10 years after the first symptoms and Gwen’s had started 6 years ago.
We left the meeting in a daze. I’m sure we discussed her diagnosis but I don’t remember the specifics. Gwen was relieved she finally had a concrete diagnosis for her symptoms. As for me I had an idea what was to come. My dad had Parkinson’s and his last year was not pleasant for him or us. She was an RN and therefore knew the significance of the diagnosis.
The next couple years
Gwen was still somewhat mobile. We continued to travel although we chose the venues carefully. We continued to dine out a couple times a week to establishments that served food on her diet. We continued to take walks around the neighborhood only on the streets because even the sidewalks were too uneven for her declining balance.
We even planned a Viking Baltic cruise. However COVID postponed the cruise for a year. When the next year rolled around her mobility had declined to a point where the cruise was impossible.
There is no cure for PSP. However, Dr. Shakkottai believed we could slow the progression via exercise. Therefore Gwen and I continued to workout at Orange Theory five days a week until October 2022. By then she was falling at Orange Theory several times a week and was becoming a danger to herself and others. Therefore, the sad day came where we had to quit Orange Theory
We continued to travel as long as Gwen was able to. Our last trip was in September 2022 to Sedona and Scottsdale Arizona. Here’s my notes on the trip: Sedona/Scottsdale 2022 September. It was very clear then that PSP’s relentless attack on Gwen’s brain and muscles was winning the war. Gwen was experiencing tremendous pain to the point she could not sleep most nights and her balance was almost non-existent.
AS time passed Gwen quit the activities she enjoyed one after another because because of her muscular decline. I’m positive the hardest for her was to stop making cards. Her favorite activity was planning and making cards for all occasions from Easter, to 4th of July, to Thanksgiving, to Christmas, to birthdays, and many other occasions. She could hardly wait until the card catalogs were published in the early spring each year. Then she would study them in detail while making long lists of materials to purchase. Card production for each event was a several month long process. She had a regular assembly line set up because she maintained a long list of card recipients. Stopping card making was a several year process. The first year that she needed help I did the precision work for her. The year after that I made the cards per her design while she supervised. Likewise, I did the next year which was the last because she could not design the cards any longer.
The Broken Kneecap
Time continued its relentless march until the most devastating event of her journey occurred. On the morning of January 25, 2023, while walking at NorthPark, Gwen stumbled and broke her kneecap. I often wish I could reclaim those few seconds and catch her as she fell, but time only moves forward. Our experience with that Emergency Room (ER) which I shall not name was not good. They only sewed up her forehead gashes even though she complained about knee pain. She could not sleep at all that night because of her knee pain. We went back to the same ER the next morning where they finally x-rayed her knee and discovered her broken kneecap.
2023 and beyond
Healing a broken kneecap is a months-long process. The specialist fitted her with a leg brace. Matthew, her Physical Therapist, visited twice a week. And the pain was horrendous. Her doctors tried several different pain medications. Gwen was either allergic to the prescription and we spent the night in an ER or they made her nauseous. As a result she endured the pain. It was during that period she started to hallucinate. I’ll never forget the night she woke me up walking without her brace, we took it off to sleep, wondering where she was and who I was.
With help from Matthew Gwen slowly recovered and with a dogged determination was able to walk a few steps. However, she never recovered to the pre-accident level. I suspect her muscles had deteriorated past the point of no return during the period of inactivity immediately after the accident
In a way we were much busier in 2023 than we had been. She had physical, speech, and occupational therapy. We started using Home Health Care Aides. She also had numerous doctor appointments as the neurologists tracked PSP’s progression. On top of all that we had several ER visits and several hospital stays. Everyday Gwen had appointments and during weekdays an Aide helped us.
During 2023 Gwen moved to a wheelchair full time and had to start using a catheter. All the while her physical capabilities slowly regressed as did her speech. 2023 was the year she started having problems swallowing. She developed dystonia (permanent cramps) in her hands. The physicians at UT Southwestern prescribed BOTOX shots in her arms, elbows, wrists, and hands which cured that problem. However, she continued to have low level pain in other muscles throughout her body.
We moved from Fairview to Trophy Club in January 2024 to be closer to our youngest daughter, Sara, whom was helping us quite a bit. Otherwise, 2024 was much the same as 2023. Gwen’s physical abilities continued to slowly deteriorate, her speech became more and more garbled, the therapist continued their appointments, Aides came and went, and the ER/Hospital visits continued.
2024 morphed into 2025 but our routine remained much the same. However, by then the therapists had stopped visiting. Phyllis had become our permanent Aide. Gwen had lost all speech. Except for moving her left arm a tad bit and her mouth to swallow she was paralyzed. By the end of 2025 she could not move her arm at all. The ER/hospital visits continued. I’m sure to people that did not live with Gwen the changes were apparent but living with her every day I did not notice any changes. However, sometimes late at night when I could not sleep I would remember how Gwen was a year or two ago… and would not cry because men don’t show emotions.
As 2026 dawned Gwen was failing rapidly. At the time I did not believe her passing would not happen as quickly as it did. However, the signs were all there. She could not drink anymore. We had to give her liquids with an eye dropper and puree her food. She had lost her voice totally. I am sure she knew her time on Earth was growing short.
On Friday, February 6 I took her to the ER. She was very lethargic and had an UTI. She was admitted to the hospital. Both. Dr. Shakkottai and the hospital doctors recommended we put Gwen in Hospice and take her home. At this point there was nothing they could do except keep her comfortable while we waited for the inevitable.
The final five days
The next five weeks leading up to the final five days even now are a blur to me, but I’ll never forget the final five days.
- Friday, March 20 – stopped being able to swallow altogether
- Saturday, March 21 – blood pressure very low and pulse very high and having trouble breathing. Called the Hospice. Cathera, Hospice Nurse, came to check on Gwen. She verified Gwen could not swallow. The breathing problem was because of sinus congestion in her throat that she could not swallow. Cathera ordered two prescriptions, morphine for the pain and another to dry the drainage stuck in her throat.
- Sunday, March 22 – Cathera visited again. Gwen’s throat rattle was worse. Her vitals were still the same. Today it was apparent Gwen had passed from consciousness to a world of her own. It may have happened yesterday but at the time I was rejecting reality. Sara and Andy sat by her bedside. That may have been the time she decided her life was complete and to let it go. I hope to ask her someday.
- Monday, March 23 – Gwen continued to slip away from us. I called the kids and told them she would not last much longer. Gwen’s vitals were the same except her oxygen was down to 88. Phyllis, our long time Aide and Gwen’s friend, visited. She knew Gwen was slipping away. Sara stayed with us Monday night
- Tuesday, March 24 – Claudia flew in from her conference in Houston. Mom passed shortly after seeing Claudia on March 24, 2026 at 12:41 PM. I then called Amber who came and verified Gwen had passed. After that the Hospice people took care of almost everything and told me what I needed to do and when I needed to do it. Finally, the funeral home came and took Gwen away. I stayed at Sara’s that night.
- Wednesday, March 25 – Would have been Gwen’s 76th birthday.
After all is said and done Gwen is in Heaven praising God and catching up with old family and friends while we are left her both sad because we miss her dearly and happy because she’s in a much better place, with that familiar smile, without pain
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Posted by molson46 
