ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, October 14, 2014

You Can Get Better Information On Where To Park Your Car In Chicago Than Where To Find Good Care For ALS

This is an idea whose time is way overdue.  I write today because last week I heard a story that should be the last straw.  A man with ALS who must rely on a professional care facility somehow received a painful injury attributed to a simple piece of equipment.   That is terrible.   As someone trying to help him from afar said, "The bedsores should have been a clue."  And I wondered what will keep the next person with ALS from ending up in this same place.

It's 2014.

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.)
Yet there are no good online tools for people dealing with ALS to help share experiences to rate a nursing home or equipment dealer or pharmacy or brace fitter or an online nutrition vendor or a VA clinic or even a clinical trial site.

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.






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