Almost two decades ago Mom asked me to pick up some liquid Centrum at Walgreen's. She read that vitamin E might be helpful for those with ALS. Later that same day I stumbled across a passage in Lou Gehrig's biography about Eleanor Gehrig picking special greens in Central Park for Lou. They were high in vitamin E and there was a theory that might help ALS. Over 50 years later we were grasping at the same straws. That's nuts.
On an ALS message board this morning I'm reading about people with ALS trying creatine. The creatine, creatinine theories have been around for decades, too. Thousands have tried it, yet families dealing with ALS today are having to reinvent wheels because we have not retained good information for them.
If only Eleanor Gehrig and my mother and everybody who has tried vitamin E or creatine would have left some bread crumbs for others to see what their experiments did (or didn't do) for them!
Everybody with ALS tries things. Some things are pretty innocuous and some aren't. Some things they tell the doctor and some things they don't. The information on all of those things is a terrible thing to waste.
Today many people with ALS deal with specialized clinics and ALS not-for-profits for advice and support. Many discourage patients from sharing data. Why?
I'll never forget one reason that I heard from an ALS Association patient services staff member -- "Our neurologist doesn't like patients posting their data at patientslikeme.com because it makes them lose hope." Trust me, when you're dealing with ALS, the help that a healthcare team delivers is a lot more valuable than their hope.
People with ALS are so vulnerable to people peddling hope without data. Let the data speak.
One ALS not-for-profit is managing an access program for an experimental drug. Think of how valuable it would be for new patients considering the investment if past participant data had been shared. Data trump rumors and anecdotal reports.
Websites pop up with protocols and exclamations of people with ALS improving. People who try things that fail seldom put up a website to announce that. Why aren't data being shared that reveal the good and the bad and everything in between?
I beg healthcare professionals and not-for-profit staffs to encourage (or at least not discourage) people with ALS and their caregivers to let their data speak. You have influence.
People with ALS and caregivers, please leave some bread crumbs for the next person who travels your difficult path. Please encourage your peers to share. Post your data with your progression and the things you are trying. Don't just post the anecdotal good. Post it all. You own your data. Let your data speak.
Your histories and information are a terrible thing to waste.
www.patientslikeme.com provides a nice framework for people with ALS. There are others. We need to stop the waste!