Who doesn't look up a hotel on TripAdvisor before making a reservation?
Who doesn't look up a restaurant on Yelp or UrbanSpoon to see what people think of the food and service?
Who doesn't read the reviews of items for sale on Amazon?
Who doesn't look for online ratings of roofers or painters or butchers or bakers or candlestick makers?
There are even online tools that help us find the safest and most economical parking lots when we drive to a strange city.
(And it's always helpful to see how restaurants and hotels and merchants address bad reviews. Yes, they pay attention.)
Almost two decades ago we needed to find a new neck brace for Mom that would work with difficult ALS neck weakness. I found that the ALS clinic staff had no ideas. They referred me to an occupational therapy department that was ALS-clueless. I spent an entire day on the phone and driving around trying to find someone who could help. Finally we found him. There was an excellent fitter at a large brace company who had the right brace and got the job done. At Mom's next clinic visit I told the neurologist about the hunt and the good result and the name of the young man and the company that was so helpful. A month later I asked the doctor if he remembered where Mom got her neck brace and the name of the brace fitter. He didn't. Would the next caregiver spend a day off work looking for a neck brace and not be so fortunate as we were? ALS was and still is the disease of reinventing wheels.
We need a Yelp-like tool where people can share their experiences with those who provide goods and services to those with ALS. If someone has a good experience, others should know about it. If the experience is bad, why should the next person blindly stumble into a disaster?
Decisions that you have to make quickly when dealing with ALS are a matter of life and death. They are also expensive, and it's hard to undo a bad one. They are a lot more important than my travel or dining choices where I am so well-armed with information today.
Capturing and sharing experiences could be a tangible game-changer for people with ALS and their caregivers. Finally.