When Jon and Patricia Huffman had leaky pipes a few years ago, they agreed it was time to remodel their primary bathroom.
They’d been thinking about ways to update the room and accommodate what they knew would be worsening symptoms of Jon’s diagnosis of Huntington’s disease, a genetic and progressive brain disorder that affects movement, mood and thinking skills.
The Huffmans had met interior designer Juliana Ewer of J Squared Home Designs, who helped them remodel and redecorate the living room in their Rosenberg home, so they asked for her help with the primary bedroom and bathroom.
Huntington’s disease is genetic, passed down from parent to child. When Jon’s mother started showing symptoms, they learned what they could about the disease and went on with their lives.
He started showing symptoms around 2008 and noticed that he had a heavy foot while driving and found it difficult to execute slow-rolling stops in the car. Patricia noted that those with Huntington’s often realize they’re showing symptoms when they find themselves getting more speeding tickets.
Jon, 61, stayed at his job as a pharmacist as long as he could, retiring in 2014. Patricia, too, was a pharmacist; she retired last August at age 59, wanting to spend more time with Jon and travel as much as they can until it’s too difficult for him. Their two grown sons and their grandchildren have tested negative for the disease.
Now, Jon describes his symptoms as mild, and he’s participated in clinical trials, hoping they’ll find a cure for the disease in his lifetime. Patricia, though, noticed that his gait had changed recently, shuffling a little bit more and not having the stamina for longer walks. But they stay active, going to the gym and even taking dance lessons that a physical therapist recommended.
“With Huntington’s, everyone is on their own journey,” Patricia said. “They say people with Huntington’s first seem intoxicated. Jon’s brother had Huntington’s disease and died in his 50s. He had gotten speeding tickets. They thought he was intoxicated and had an alcohol problem.”
For now, the Huffmans are getting their home ready for the day Jon’s condition worsens and his mobility is affected. Sprucing up the bedroom and adding special accommodations in the primary bathroom are part of that — and all of the work was done during the coronavirus shutdown.
Measures include wider doorways and more open spaces so there’s less furniture to get around or run into. They still have carpets and rugs, though Patricia knows there could be a day when they may have to remove the carpets and rugs, as they’ll be easy to trip over if Jon’s gait turns into more of a shuffle.
In the shower, they added grab bars and shower controls on the doorless end, with more grab bars and the showerhead on the other end, making it usable for Jon for the first time in quite a while. The shower never had enough water pressure to suit either of them, so that problem was corrected, too.
Ewer found the couple a free-standing tub and designed a pony wall behind it to hold plumbing and provide a shelf to hold soap or towels. One of the most beautiful touches is the chandelier they chose to hang over the tub, a Regina Andrews design made of brass and crystal.
A great-looking tile in a creamy taupe covers the shower walls. Shampoo and soap niches have a ceramic basket weave tile pattern. Counters — previously Formica — were upgraded to quartzite slabs.
The toilet area needed special considerations, with a Toto bidet that’s taller than standard toilets and more grab bars so Jon can remain independent. As if the bidet isn’t fancy enough, it’s also motion sensitive, so the lid raises as soon as someone enters.
Even something as simple as a pocket door entry helps, tucking neatly into the wall and staying out of the way.
One change they’re glad they made had nothing to do with accessibility. There had been a windowlike opening in a wall between the bathroom and bedroom. Because of an arched window in the bathroom, harsh sunlight poured into the bedroom, making it bright and uncomfortable.
After sealing the opening with sheetrock, the bedroom is as dark as they want it to be. For the arched window on the exterior wall, Ewer designed a metal tableau that sits on top of an opaque screen to filter the light that comes into the room.
The wall with the sinks transformed with Graham and Brown wallpaper as a background, Venetian glass mirrors and pretty sconces, all above more of the basket weave tile — this time used as a small backsplash.
In the bedroom, they bought a new king-size adjustable Bernhardt canopy bed with an upholstered headboard and footboard, and new custom-made bedding.
“The flow will be perfect no matter the situation,” Ewer said. “When we laid everything out, we considered what might come in the future and we made it easily walkable and accessible for later on.”
diane.cowen
@houstonchronicle.com
