When Burt said he missed going to the ballet, I really wanted for us to go. It didn’t happen; I heard about a performance geared to the diagnosis on a Friday; the dance event was scheduled for Sunday. I wasn’t able to pivot that fast. I still have regrets. It wasn’t easy to find accessibleContinue reading “Relaxed performance”
Category Archives: Activities
Practical concerns
As Burt retreated into his bed, his OT raised concerns over pressure sores. She was not being alarmist, I only wish she was. The skin is our largest organ, and it is susceptible to wounds and tears. Burt has developed several areas that need lots of special attention. We use a number of ointments andContinue reading “Practical concerns”
Making a case
Playdoh makes an unexpected case for permanence. Playdoh, it turns out, will dry. You can even put your creation on a tray and bake it. I am looking forward to a chance to try to work with Burt with this material. His current hobby seems only to be talk and lots of it. Lately, it’sContinue reading “Making a case”
A Welcome Visitor
Burt really perked up during a visit this week. Our guest was someone we’ve known for many years; Burt didn’t remember him but he was a happier guy than he’d been in awhile. He even made an effort to get out of bed to go to his recliner. He told jokes. Visits break up theContinue reading “A Welcome Visitor”
Our outdoor weekend
This morning, Burt asked me what I was doing yesterday. I said I was in the park with you. “I didn’t see you. Why didn’t you come say hello?” It now occurs to me that Burt is antsy in the park when he doesn’t realize I am with him.
A job
Did I mention Burt’s desire to get a job? Actually, he’s been on a hunt for work for a while now. In some cases, his “bad” wife was the impediment. [I wouldn’t join him at the job, and my doing that was a requirement for his getting it.] Other times, he felt they were tooContinue reading “A job”
LBD Awareness
A year ago, I commemorated Oct, Lewy Body Awareness Month, by beginning this chronicle of our journey. October marks 4 years since Burt was diagnosed. It is not a happy anniversary. Nonetheless, I remain grateful that I can still enjoy him. We are having some rough times, but he is still my delight. I amContinue reading “LBD Awareness”
The impact of dance
Dr. Julia Basso studies the effect dancing and movement have on brain health. She says (and I quote loosely) that even watching dance has a positive impact. Watch this YouTube video interview for more from Dr. Basso on what she has documented about the healing power of movement. Full disclosure Dr. Basso is my dearContinue reading “The impact of dance”
Still working it out
The dominant theories right now include He’s too warm [makes me feel a tad guilty] He’s bored [that applies even more to staying home] He’s genuinely afraid our aide won’t come back for him He feels trapped in the wheelchair [a situation in which he has even less agency than on his walker] A mispreceptionContinue reading “Still working it out”
Feeling Useful
The desire to help out is about being able to still be a part of the life we had. It’s natural to want to contribute as you once did. This has been a thread in one of my support groups. It has belatedly turned on that old light bulb (duh). “Aha, that explains why BurtContinue reading “Feeling Useful”
