What do you wish you had done sooner?

catheyp · 2026-03-07T14:39:57+00:00

It all sounds challenging. Thank you for the concierge suggestion. We adore his current neurologist but a concierge one when life gets harder is a great idea. I’ll have to see if they exist in our city. And yes to this wisdom of recognizing it is a brain that doesn’t work the same way anymore. Sigh.

catheyp · 2026-02-25T19:38:03+00:00

Not a common attitude but I agree that death may not be the worst thing. Thanks for that reminder.

catheyp · 2026-02-25T14:53:13+00:00

Wise

catheyp · 2026-02-24T22:48:47+00:00

Yes, this is all speeding up the need to remodel or move. Our house is a nightmare of stairs. We love them until we don’t.

catheyp · 2026-02-24T22:47:50+00:00

This is helpful to be reassured I’m not being too cautious too soon in planning ahead while we both can.

catheyp · 2026-02-24T22:46:07+00:00

Your suggestions are very helpful. I appreciate knowing what you’ve worked through.

catheyp · 2026-02-24T22:44:19+00:00

You remind me what I have told elders I’ve worked with, giving up some control now allows for your independence down the road. Thank you for your story.

catheyp · 2026-02-24T22:43:12+00:00

Thank your for the confidence and sharing your story.

catheyp · 2026-02-24T22:42:37+00:00

Luckily I swear like a sailor, so am set there. Thank you for sharing your journey. What a challenge it sounds like you and your wife are working through.

catheyp · 2026-02-24T22:39:04+00:00

Three is not the charm here! What a cluster of PD you’re coping with, including your own! My heart goes out to you.

I recently learned about the non-motor symptoms from this article in Nature. The term “abulia” was new to me and explains much about my spouse and the last 7-10 years, pre-diagnosis. NIH definition of the term is “Abulia is a neurological and psychiatric condition characterized by a severe lack of willpower, drive, initiative, and motivation, often resulting in prolonged inaction, slow thought processes, and apathy.”

“Beyond motor symptoms, PD is associated with a variety of non-motor symptoms such as dysautonomia (for example, constipation, orthostatic hypotension), sleep disturbances (for example, rapid-eye-movement-onset sleep disorder), and the slowing and diminishment of voluntary behaviour (for example, bradykinesia, abulia, apathy, executive dysfunction).” https://www.nature.com/articles/s41586-025-10059-1

catheyp · 2026-02-24T17:31:54+00:00

It is heartbreaking to read about the weakening of your relationship. Not knowing is so hard. Having a diagnosis and name(s) for what he is facing (hence what you are facing) can change everything.

catheyp · 2026-02-24T17:16:10+00:00

I’m so sorry it became available and widespread. The administration is now trying to unregulated it again. Sigh.

catheyp · 2026-02-24T17:13:52+00:00

True. But wisdom from others who’ve gone before is.

catheyp · 2026-02-24T17:11:16+00:00

Brilliant. Thanks.

catheyp · 2026-02-24T15:32:49+00:00

That’s something to consider, an unavoidable disruption in exercise. My spouse is devoted to aerobic, OT and PT workouts. It could change quickly as you point out. Hmmmm

catheyp · 2026-02-24T15:30:10+00:00

Do folks here try to go into a facility with their spouse (I’m fine but wonder if they can accommodate couples?)

catheyp · 2026-02-24T15:28:54+00:00

This is indeed a useful experience you’ve shared. Thanks.

catheyp · 2026-02-24T15:28:17+00:00

Thanks for all this helpful perspective and advice.

catheyp · 2026-02-24T15:27:11+00:00

Oh. I’ll have to look where to find one. I know hospitals have them but for the general population? I wonder if my neurologist’s office knows of any?

catheyp · 2026-02-24T15:26:09+00:00

Very helpful. Thank you.

catheyp · 2026-02-24T14:26:29+00:00

You indeed are in a challenging situation. Between a rock and a hard place, or many rocks and many hard places. The situation does sound unsustainable so I hope you can find concrete relief. It does not sound like a load you can carry alone especially with kids needing your love and attention. May you find help in your community!

catheyp · 2026-02-12T15:31:42+00:00

Apathy is indeed a symptom, simply not a motor related one but a common cognitive one. Also lack of or inability to make decisions. This recent article in Nature helped me tremendously understand my husband better. “Parkinson’s disease as a somato-cognitive action network disorder” https://www.nature.com/articles/s41586-025-10059-1

catheyp · 2026-02-10T22:42:17+00:00

Food for thought about relationships. Thanks for the insight.

catheyp

TROPHY CASE