Current Age: 63
Symptoms onset: 56
“What began in 2002 with urinary frequency and peripheral neuropathy has progressed to the point where I may hold the unfortunate title of APBD poster child. Flash forward six years, worsened bladder woes, massive fatigue, lack of balance and walking difficulties sparked a four-year quest for a diagnosis. In 2012 after countless tests, doctors, and misdiagnoses I learned I have APBD. Then after two bouts of hypothermia and hospitalizations in 2014, I was using a wheelchair full time. With a strong upper body, sharp cognitive skills, and part-time helpers I lived independently. But in 2017 choking and garbled speech began and by summer 2018 swallowing and speech were gone. After a lengthy hospitalization and rehab, I regained some strength and learned to use my feeding tube. I write on a small erasable tablet called a boogie board and use Proloquo4Text adaptive speech program on my iPad to communicate. Now dependent on 24/7 caregivers at an independent senior community, I am blessed by the constant support of my brothers, girlfriend, other family, and dear friends.”
You can follow Alma on her blog at betterbranches.tumblr.com.
Alma’s story is part of the APBD Research Foundation’s, #MyAPBDstory campaign, to raise awareness and funds on Rare Disease Day, February 28, 2019.