Life with ALS: The Stark Reality

Life with ALS: The Stark Reality
5th October 2015 RIDT

Founder of the ALS Malta Foundation, Bjorn Formosa, gives us unique insight into what it really feels like to live with ALS and to know you’re facing certain death within the next two to three years’ time.

0795aa06d363106a5e649857bf689dddfd754662-1438503874-55bdd3c2-620x348At 28 years old, Bjorn Formosa was diagnosed with ALS (Amyotrophic Lateral Sclerosis), but his fighting spirit drove him not to give up and, instead, he went on to set up the ALS Malta Foundation. The months before and just after the diagnosis weren’t easy, however. Here is his story, in his own words.

“It all started about a year ago with mild cramps, which I attributed to anything but ALS… I didn’t take much notice until the end of the year, when I was playing football and started feeling a strange sensation in my legs. I can’t really explain it; it just felt different and my legs felt weaker than ever before.

“Then, in February of this year, I went back to the gym and it was then that I realised that something was really wrong. I was trembling lifting the lightest of weights and couldn’t do even the most basic of exercises, which I would have performed with ease in the past.

“So I paid a visit to a cardiovascular surgeon, thinking it was a circulatory issue, but my blood flow was just fine. I then booked an appointment with the first neurologist I could find, and that was when the drama started.

“I went there, petrified, thinking I had Parkinson’s but the neuro ‘reassured’ me it wasn’t that – but the look on his face said it all. It just showed that something was terribly wrong.

“I was then referred, with urgency, to hospital, where I started a series of tests including blood tests, scans, biopsies and every other test imaginable. Unfortunately, there is no biomarker in ALS, which means that there is no blood test with which ALS can be determined – they come to that conclusion when everything else has been excluded. So, basically, if you get a dirty EMG (Electromyography), ALS bodily symptoms, and all the results from the blood tests are clean, then you probably have some sort of MND (Motor Neuron Disease).

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“Well, all results were clean, but, funnily enough, I was hoping that one of them would come back positive or that they would scan something abnormal. I was hoping for anything but ALS. Unfortunately my body was ‘healthy’, so it could only mean one thing: I had lower motor neuron degeneration from the anterior horn.

“I was so scared of ALS because I had diagnosed myself months before the final result came in. Googling and matching symptoms, it had become quite clear in which direction I was heading. The first weeks were surreal, absolutely terrible; my whole world fell apart and I could not believe this was happening to me. I had fought a million battles and won, but this, an incurable disease, which I can’t do anything about…

“It was then that I realised that I had to do something to have at least a fighting chance. I started preparing myself psychologically for the upcoming diagnosis and, weeks before that, I had already set up the roadmap for the creation of the ALS Malta Foundation. I was prepared to give ALS a hard time, to put it on the map of national health care, and to boost research towards finding a cure for this most terrible of diseases.

“Paradoxically, even though in a precarious health situation, I’ve never felt stronger or happier. I’m approaching life from a27b2c2beb24a2fdccb0463870247ab5c01304639-1440083292-55d5ed5c-620x348 completely different perspective. I do, of course, have some fantastic people that give me the added strength to move forward, and I’m determined not to give up till my last breath, and to leave a structure behind that can really cater and change the situation for people suffering with ALS in Malta.

“I’m not afraid of dying anymore, even though I know that every day is a countdown towards the inevitable. But that’s the same for everyone, I guess… After all, no one really knows their departure date.

“Now I wish I could have lived more, but maybe everything happens for a reason… And I will use my assigned time to successfully reach all of ALS Malta Foundation’s milestones and to, hopefully, help find a cure.”

The ALS Malta Foundation in collaboration with RIDT, are working on raising funds to help raise awareness, better the lives of ALS sufferers, and improve ALS/MND research at the University of Malta. Help us help them get there, by donating at http://www.alsmalta.org/donate. Alternatively, you can send an SMS to 5061 9271 to donate €11.65 or to 5061 8170 to donate €4.66. Monthly recurring donations starting from as low as €1 (per month) can also be set at www.alsmalta.org.