J’s disabilities turned out to be worse and more long-lasting than initially thought and regaining independence in any activity has been challenging for her. I’m always on the lookout for something that can assist her to do things on her own, be they self-care, recreation, education, or exercise. Being independent, even in a small way, makes a huge difference in a disabled person’s life providing restored feelings of confidence and self-worth and lessening the fear of being a burden. Since J is still so young (53), being able to exercise independently is a major goal in keeping her fit and healthy.
Easy to Spend Money, Hard to Find Success
As I’ve documented in this blog, an endless range of physical and intellectual disabilities make it difficult to find assistive devices that fit everyone’s specific needs — no one size fits all. You have to keep looking for the latest innovations and re-evaluating existing devices, and importantly testing things out as much as you can. So far, we’ve had modest successes that came at significant expense. The following three devices cost about $10,000 in total (not counting modifications to the house) and only satisfy the barest of J’s needs:
Most successful was the acquisition of the Velochair for exercise and recreation. This device allows J to be mobile on her own (with occasional redirection). She gets both physical and mental exercise, and she enjoys being self-sufficient. Combine that with rides at the beach or in a park, and the Velochair is certainly the best investment we’ve made.
Next on the list is the Neater-Eater, a simple yet innovative device that allows J to feed herself. As I documented before, we’ve tried robotic feeding devices that attempted to do all the work, but J wasn’t able to adapt well. The Neater-Eater works to reduce J’s disability and give her control over the timing of mouthfuls and food choices. It’s not a perfect system, and J is not always successful with it, but when she is, the results are immediately appreciated by her and by me now being able to focus on my own meal.
Another example of a successful product was the acquisition of a NuStep Cross Trainer Recumbent Exercise Bike. The Velochair is only useful when the weather is good and it does take some effort to transport it, so we needed a year-round exercise option and we opted to go with the device J had been using at her physical therapy sessions. The NuStep is well suited to J’s needs offering her different types of exercise with varying levels of intensity. Importantly, it’s stable enough that she can use it comfortably on her own.
Three Areas That Need to be Addressed
I would love to find useful assistive devices to help with three other problem areas: walking, communication, and toileting. Regarding walking, between J’s balance issues and degraded motor control, she is only able to walk short distances using a specially equipped walker with the assistance of a helper. There have been exciting advancements in robotics that help individuals regain the ability to walk but these are typically extremely expensive, custom devices out of reach for most disabled individuals. I’m just now starting to see more “consumer” oriented devices such as the ReWalk Personal that give me hope that a solution is not too far off. NOTE: According to ReWalk, the device is not FDA approved for stroke injuries, only for spinal cord injuries. They didn’t have an estimate for that to change. <sigh>
J’s difficulty communicating is the most difficult of her disabilities for me to deal with. While she understands everything, she just isn’t able to convert that into a “normal” conversation leaving me feeling like I’m simply talking to myself most of the time. We tried several devices that would allow her to use her hands or eyes to form responses but J’s problems are only partly a vocalization problem. I haven’t found any devices or treatments that will help her but soon we hope to be trying Transcranial Magnetic Stimulation (TMS) as a way to energize her abilities. NOTE: TMS is FDA-approved only for the treatment of depression. Depression is common among stroke survivors so we may use that as our entree. I’m starting to dislike the FDA.
Toileting is certainly one of the most difficult areas for both the loved one and caregiver to deal with on many levels. Helping someone with toileting can be embarrassing, awkward, difficult, and frustrating for both parties. J’s combination of urinary and bowel incontinence coupled with motor control issues leaves her very little ability to take care of herself. Assuming we can get her on the toilet on time, it would be great if there was a device that could assist with personal hygiene. We’ve tried one of the new bidet toilet seats but it wasn’t comfortable or effective for her. I’ll keep researching the issue but while there are thousands of devices that make toilets accessible, very few address the actual mechanics of the operation. Some new innovative thinking is needed to address these needs.
Regaining Independence Can Have a Positive Financial Impact
A recent article discussed that even with government assistance, living with a disability is very expensive. It’s expensive for all of the parties involved including the government. Better assistive devices, while expensive in their own right on the surface, may offer short payback periods given the reduced costs of medical and home care. J staying healthy both physically and emotionally keeps her out of the hospital and other nursing/care facilities.
I believe that the capability to help the disabled in substantive ways outside of a clinical environment is right around the corner yet the time to market may still be years or decades away. There are many contributing factors to the dearth of assistive devices which I hope to explore in future post. The main ones have to do with the difficulty of identifying large enough homogenous markets, no single organization or government direction of investment resources, and an overly complicated process for bringing medical devices to market.
What successes have you had helping your loved one regain independence? What areas are your priorities? Share what you’re thinking and maybe we can find a strategy together to move the ball forward.
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