My initial reaction was mixed. Having progressed from the physical tests of cardiology whereby you can have sense of how the body is doing/feeling, waiting on the results of a brain scan is a different beast and plays on the mind. I had prepared myself for a more life threatening revelation, which would be difficult to overcome with the imminent arrival of a daughter. I was somewhat consoled by my neurologist’s message that MS should not detract from living a long and fulfilling life.
With this is mind I left the neurologist’s office slightly optimistic. I phoned my wife and told her I had good and bad news – the good news was I had no tumours, no cancer and nothing that was life threatening. The bad news (although everything is relative) was that he thought I might have MS. She misheard me at first and thought I had said the neurologist didn’t think it was MS, so when I confirmed that he thought it was – I wasn’t prepared for her reaction. Extreme hysteria attacked me from the other end of the phone, my wife obviously knew more about the illness than I did. I was somewhat unprepared for this reaction given the neurologist had told me that this was not a life threatening illness but could expect mobility issues within the next three years.
That night whilst we both lay in bed unable to sleep, we started the research (research which still continues now). Whilst my wife looked for cures that didn’t exist, I started learning about the illness – what it actually is that causes the possible paralysis.
For those who like myself at the beginning knew very little about the nature of the illness, I hope to explain in simple terms with a basic description below, that I have taken from several research journals, books, articles etc on the illness.
The nerve endings in the body I will liken to an electrical wire (an Apple iPhone charger if you will). These nerve endings are protected by a sheath known as myelin, just as a phone charger is protected by plastic. In a person who has MS, the body’s immune system attacks the myelin sheath leaving the nerve endings exposed, just as a phone charger can start to fray (see below image). As with a phone charger, if there is damage to the protective coating it becomes temperamental and does not charge efficiently. In the body, when the myelin is damaged by the immune system, the nerves (live wires) are left with many scars (Multiple Sclerosis) or lesions and the signals sent through the nerves become impaired. Over time as these attacks continue, further damage is caused which affects the signals sent through the body, consequently resulting in the impairment or paralysis of anywhere the nerves reach, i.e. everywhere.
Following a day or two of feeling low, the weekend arrived and we found optimism where there was cloud. The small amount of research we had done to that point had suggested that this was an illness which could be managed through lifestyle changes. With the uncertainty akin to the Sword of Damocles now above us we were resolute in making sure we appreciated every moment together.