08/06/2016
In these past months I have met with many of you personally, and the most obvious question that pops out when greeting someone is "how are you doing?" I've always responded that I felt morally great but found it always difficult to explain how I really felt physically. Indeed ALS is a very though disease both to understand and explain its dynamics.
Today I decided to explain what I'm really going through even though I still consider myself the happiest person on the planet. ALS progression is normally measured very accurately through 2 scales of measurement which are the Functioning Rate Scale (FRS) which measures our physical functioning ability and when you're healthy carries a max score of 48 and the Forced Vital Capacity% (FVC%) which calculates our ability to intake air and basically being able to BREATHE. A healthy person is in the range of 95-100% generally.
In the graphs below you can see my numbers, from last year till now. My FRS score has gone down from 48 to 27 while my FVC% from 100% to 55%. Practically I lost HALF of my abilities in 12 months. With a simple mathematical calculation one can easily predict my health condition in a year's time!
This is to underline the real terrible progression of this disease. HOWEVER, I'm still here and feel determined and stronger than ever to give a better prospect of life to those who will follow me because no-one must ever again endure my physical sufferings.
I kindly ask you to continue helping our cause by donating via SMS to 50618936 for €6.99 or call on Donation Lines: 51702016 - €15 /
51802018 - €25
