Hello -
I’m in the position of wanting to make everyday life more manageable and comfortable for someone relatively young who’s been diagnosed with a parkinsonian disorder. At this time, their symptoms are non-cognitive in nature.
Would love to get some tips on how to make their life easier with automation.
Thanks!
Some fodder to start the discussion. At 76, I have been thinking about my future mobility issues.
First - the obvious: read: Finding the Home You Need: Modifications for People with Parkinson's Disease | Parkinson's Foundation
Some automation specific:
Control: Read: Computer Adaptations for People with Parkinson’s Disease - Adaptive Tech Solutions, LLC
Smart Home Control Device: Investigate keypads or buttons that are good for persons with motor control. Or make a pad using a tray, glue, and single smart-buttons (allows for more distance between buttons to mitigate motor control).
Home automations:
Auto open doors: I like the idea or automatic open/close pocket doors for room access where desired. Pricey and a retrofit may be disruptive. Could be a part of the home update for wider entry / exit if needed.
There are automated toilets that provide functions to make life easier.
Room access: Look at automated pocket doors or some other door automation. This will make it easier when moving about. These can be set to open/close as the person approaches and may make it easier. Also, note that house and room access door openings may need enlarging to accommodate mobility assistance devices.
Set up three or four global activity routines for the most common: go to bed, go to sleep, wake up.
Entertainment: Smart entertainment control activated via smart buttons that allow the person to easily get to favorite channels browse channels/applications. Sort of a very large TV remote control to the user.
There used to be smart button Programmable Entry Panels that had lines of text that for lit labels. May still be available - but not a simple project.
with automation
I have a fair amount of experience with adaptive mobility aids but not so much with modern tech-based automation. My younger brother was a quadriplegic for 15 years (1970s-80s).
My 1st suggestion is to add a 3d printer to the tech mix. There are many mobility aids already modeled and ready for printing. Like so:
I'm assuming loss of fine motor control will be the first disability to address? The Hubitat-Alexa-Ecobee-Sonos quad is a must-have, IMO.
This thing is great! We've had ours for 3 years.
Robotwist Jar Opener, Automatic Jar Opener, Deluxe Model with Improved Torque, Robo Twist Kitchen Gadgets for Home, Electric Handsfree Easy Jar Opener – Works on All Jar Sizes
Do they already have appliances & devices with IR remotes?
Parkinson’s classically causes a “shuffling gait,” which leads to mobility problems and potentially, falls.
Atypical forms of Parkinson’s can have other manifestations like swallowing problems or blood pressure instability.
If your friend is comfortable talking about it, it’s probably helpful to understand better what their symptoms are or if their neurologist has spoken in more detail about a specific type of Parkinsonism.
That could help you understand what kinds of automations to suggest prioritizing, based on their specific needs.
This is very early. We were at the neurologist together yesterday when they received their diagnosis. At this time, the symptoms are constipation and tremors in the morning (on one side). Their gait is slightly slower than usual, but it isn't shuffling yet. Their blood pressure is elevated, but I am not sure that is related. The DATScan indicated a more than 2-SD reduction in their striatal dopamine transporter levels, when compared to "normal" adults in their age group (mid-50s).
Initially, they'll be treated using a dopamine re-uptake inhibitor or a dopaminergic agonist. But I anticipate that over time, there will be gradual reduction in their motor skills. That's the phase that I want to start preparing for over the next few years. Within 5-6 years (or sooner as warranted by their symptoms), I want to move them into a house that can accommodate their needs better.
Yesterday, we had a long chat about a plan for their future that included lifestyle/dietary changes, fiscal planning for the future (including long-term care), and physically supporting their changing needs.
Is there a caregiver present?
Are the current tremors on the dominant side?
Physique? Thin? Overweight? This comes into play pretty quickly with transferring, transporting, etc.
move them into a house
I've modified 2, designed my own, and helped tackle a few for others. Some aids can be made ready fairly inexpensively using commodity building materials.
Ceiling track lift:
https://www.reddit.com/r/BeAmazed/comments/17eiprl/this_is_really_cool/
There is no caregiver right now. And I anticipate that they will continue caring for themselves for at least the next few years. Their son visits them once a week, and I plan on coming here for a few days each month.
Yes. I should also emphasize that they are not currently on any medication. But will soon be. It will probably be pramipexole (Mirapex) or some other agonist.
BMI is between 24 to 25 - so they are not overweight.
Dang - that is very very nice!
I built a short, non-motorized version to transfer a wheelchair sling (bosun sling) into a shower. That was one of the 'cheap commodity' mods I mentioned above.
I do not think that consumer-grade exoskeletons are out of the early-development stage, but they're worth watching. So far, they're being marketed to hikers and athletes instead of the elderly/disabled walking assist market. Odd.
2025: Hypershell's X-series exoskeleton at CES
===========
900 watts of walking assistance
2024: Dnsys X1 Exoskeleton:
===========
2022: Moonwalkers
Watch Testing Shoes That Make You Walk 250% Faster | On the Go | WIRED
This doesn’t strike me as a feasible solution to improving mobility or avoiding falls in many elderly people, which have multifactorial causes like dementia/cognitive decline, poor balance, poor eyesight, dizziness from blood pressure changes (sometimes exacerbated by too many BP meds), general frailty, primary neurologic issues or other medical conditions.
For people with physical disabilities that limit or prevent them from walking, but aren’t related to being elderly/frail, it sounds like it could be an exciting area of development.
As this document indicates, it’s often very low tech things that can make the biggest difference for keeping frail, older adults safe in their homes for as long as possible.
Things like grab bars in the bathroom, adequate lighting in hallways, removing area rugs that can be tripped on, etc.
Agreed. In my experience, there have been 2 things that have repeatedly scuttled the best of plans and they should be addressed preemptively. Falls are #1. #2 -pressure spots ...once they occur, it's too late.
I make lengthy assist bars out of 1-1/4" Sch40 pvc pipe with an inner insert of 1" Sch80 pvc. A piece of 3/4" EMT will tightly fit inside the 1" Sch80 if you really want strength & rigidity.
I recommend Hollaender structural aluminum speed rail fittings
https://www.zoro.com/kbmt/speed-rail-fittings/?fqv%3Abrand=HOLLAENDER
bathroom
Replace towel bars with beefier 'decorative' grab bars available in 18-24-36 inch and usually cover the old towel bar mounting holes so there's no touch-up work.
Amazon.com: Moen YG5424CH Bathroom Safety 24-Inch Stainless Steel Traditional Bathroom Grab Bar
Amazon.com
garage/entry steps
You can break the bank on grab bars. I use this one as the price is almost reasonable;
KOHLER Traditional 42 in. ADA Compliant Grab Bar
Amazon.com
I highly recommend engaging with an Occupational Therapist (OT). There are some who specialize in home modification & they are becoming increasingly open to how smarthome tech can compliment the therapeutic intervention & universal design expertise they bring to the table. Just curious - where in the US your friend resides.
@aaiyar is in New Orleans, Louisiana.
In the US, our (multiple) experiences with OT has been only fair-to-poor --particularly if involved long-term.
Sorry thats been your experience ...
Download the Hubitat app
