Molecules Littering the Sidewalk
First I stumbled on a path, and then I stumbled on a leaf. Now I stumble on molecules. I certainly never stumbled on the diagnosis which took four years of perseverance. It included five neurologists, seven MRIs, two CAT scans and about 50 blood tests. Within two weeks, the neurologist who finally figured it out had me in the only existing clinical trial for APBD. I followed the protocol religiously, out of sincere respect for the many lives that rest on the cumulative results. APBD symptoms have a certain variation in terms of age of onset and speed of progression. I wonder if the drug will be universally, or only selectively, effective. Or maybe not effective at all.
APBD is a discouraging, daily, uphill battle. My brothers provide encouragement; my girlfriend learns and offers a new kind of compassion; distant family members rally; friends hold my hand; strangers offer to carry; my swim coach innovates and guides; my dog offers comfort. Wheels, ramps and other workarounds are survival.
In previous blogs, you’ve read about the A-P-B-D indicators for the disease that’s known as Adult Polyglucosan Body Disease, APBD. If you believe you have those indicators, a simple saliva test can settle the question. Write to info@apbdrf.org to arrange for a test kit to be sent to your home. And if you have APBD, know that the APBD Research Foundation is hard at work to get to a cure. You can help us move forward, too. Everyone who gets diagnosed should click on the red button at the top of our homepage, www.www.apbdrf.org, to sign up with the Patient Registry. Also on our homepage, you, your family, friends and colleagues will see an orange button that helps process a donation towards research expenses.