Debbie Pinkston

Ataxia is a family problem. It affects the individual diagnosed of course, but encompasses the rest of the family as caregivers, and those who must wonder and wait if it will continue on to their generation.

I am a second generation Ataxia SCA6 patient, my father and his only sibling, my aunt, both were diagnosed 14 years ago. She is in a wheelchair, he is unable to walk without a walker. They live on opposite coasts and neither can really travel further than in a car.

Over the last few years, it has gotten harder and harder to get my father into my home, just one step up, but it took two people to help him navigate safely. It was about time for me to get tested and figure out what I needed in the way of an age in place home, but regardless I wanted a home my family could easily enjoy together.

So…I began to search for a property near my parents retirement home. It goes without saying that there are no ADA houses to purchase. So, I found a flat lot, designed an all ADA home that I knew my dad could navigate as easily as his retirement home, and then got tested. I too have SCA 6, but I have time to adjust to my new home, so I doubled down on my efforts to guesstimate what I would need for the next 20 years or so. I live alone, so automation was a key for me.

Some of the things we did can’t easily be done without a major remodel or new construction, but some are easy modifications and I wanted to share with the Ataxia community, as it was our family need that precipitated this effort. I hope some of these suggestions are helpful.

Overall Design

The overall design of the property is flat, no steps anywhere, not in the garage, up to the front door, out the back doors, or anywhere. I built an ADU (accessory dwelling unit) so that if I need a caregiver, they have their own space, but in the foreseeable future it is a very private guest house. All bathrooms have grab bars and one in the main house has several so my dad can have 2 hands on them when he needs to. All showers are roll in showers with grab bars. Many walls have been backed so additional grab bars can be added. They are also decorative, and many are multifunctional, toilet paper holder/grab bar, towel bar/grab bar, so they fit in and have good function. They are rated for 250 lbs. in the master bath/dressing area, I have folding seat, like a jump seat that I can pull down to sit and dress without leaving the closet/bath/dresser area. All toilets are ADA height and 2 have Bidets in case it gets hard to reach around as the disease progresses.

There are very few doors in the house, they are hard to open with a walker or wheelchair and I live alone, so why? I have pocket doors so that if I want to close an area off I can, but only 2 bathrooms have real doors. The back side of the house is sliding doors and an accordion door, again, flat thresholds, no stepping over anything.

All outlets are raised to 18 inches instead of standard 12. I have raised seating levels throughout the house so that the distance down and up from the chair is not as much. In ordering furniture, I paid attention to seat heights as well. My hearths, planting boxes and shower benches are all 22 inches high so I can develop muscle memory for how low I need to go with confidence.

Automation

I was able to automate window treatments, so they move up and down from a light switch. I am using a program called Control 4 to manage all the automated tasks. I have 6 upper windows that are motorized and open and close from the app or from a wall switch. I have programmed lighting I can leave on at night, and hallway lights that are set to go on at 10pm every night and off at sunrise so I always have visibility if I have to get out of my room in the middle of the night. I have security cameras surrounding the property and an alarm system, all automated. I have a garage door opener automated, so that I can let people in from anywhere. I have the same feature on my front door and the ADU front door.

Wall switches control all ceiling fans. I have outdoor fireplace controls at eye level for ease of use. I have outdoor heaters controlled by remote or application. My indoor fireplace has a remote.

I have an awning that moves by remote, so that I can throw shade in the backyard without cranking an umbrella.

I can turn on the AC/heat in main house and ADU with an application.
Speakers in every room and backyard can be controlled by an application. An iPad in the great room controls everything in the house, if my phone is not close. I have a landline with handsets in every room, so I can get to a phone more quickly. My cell phone rings to the landline.

Landscape watering is all automated by a tool called Rachio, which can be adjusted on my phone.

What is One Thing You’d Like the People to Know About Ataxia?

All hallways are wide, doors are wide, doorways-some without doors are wide. Outdoor pathways are concrete and packed DG, for ease of navigation.
My gym has no equipment, just a chair, mats, wall mats etc so that I can easily navigate and door floor exercise or stretches without trip hazards. I have an infrared sauna, which research shows has produced positive results in neurological conditions such as Parkinson’s.

The mud room is spacious and the washer and dryer have pull out boards under them, so that a laundry basket can sit there or so the board-think cutting board in your kitchen can catch the inevitable falling laundry before hitting the floor. The washer and dryer are at eye level for minimum bending. I have a wall mounted ironing board and hanging rod near the washer so I do not have to move far to iron or hang clothes.

The garage floor is epoxied with extra anti skid material in it. It feels slightly rough, but looks smooth to give me traction when navigating.

The yard has lots of hardscape, all wide enough for a wheelchair or walker and companion to walk to the front door, or around the side of the house. Because I have no steps the hardscape slopes at a1/8 of an inch per foot for drainage away from the house. It is very subtle and manageable for my dad even today. My gates are barn gates rather than swinging gates, for ease of opening and closing once I need a walker.

I know this is a lot of information to process, but even one or two household modifications can make a big difference.

Take care!

What is Your Ataxia Story?

As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.

Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community.