Expressing adequately in words the symptoms of any disease, what you are actually feeling, is sometimes difficult to do and can be frustrating for both patient and doctor. I am often asked to describe the pain that I am experiencing. Knowing the difference between a throbbing, aching, sharp stabbing pain, one that comes and goes or relentlessly continues without a break, is of great help to the doctor examining you, hopefully leading to a correct and quick diagnosis.
When I was eleven years old, I had my first major bone crisis http://qjmed.oxfordjournals.org/content/98/12/916.full due to suffering Gaucher disease, which is extreme chronic pain, usually in a joint, lasting a few days, or in some cases, weeks. It was the summer holiday and I was looking forward to no school, messing about on boats and playing on the beach where we would spend most weekends and holidays by the sea. One day I was suddenly struck with the most unbearable pain in my left knee, so severe I couldn't even stand. Taken to the emergency room of our local hospital, nothing could be seen on an X-ray, but of course today we know that a bone crisis cannot be seen on a regular X-ray. Back in those days, little was known about Gaucher disease, and unfortunately patients suffered greatly for there was hardly any information and certainly no treatment. The doctors knew something was wrong, but couldn't determine what, apart from seeing I was in great pain, so they gave me Aspirin! They may as well have given me a chocolate bar or peanuts for Aspirin does absolutely nothing to deflect the chronic pain of a "Gaucher bone crisis". Today is a very different story, as so much more is known about Gaucher disease. A patient experiencing a bone crisis would be admitted into hospital, have a bone scan to confirm diagnosis and put on a morphine i.v. drip, relieving the excruciating pain and monitored carefully until the episode is over.
Living with two diseases, I wear two hats, so to speak. Although Gaucher is a rare genetic condition and Parkinson's is a relatively common neurological disease, they both share a few of the same symptoms which overlap. This is where it becomes extremely difficult at times to judge what is attributed to each disease and responsible for particular similar symptoms.
Diagnosed with Parkinson's is like a one way ticket, on a mystery tour, a journey of unknown length, but the final destination leaves little guess work. Like "death and taxes" there are certain things in life we can be sure of. What makes this disease so unpredictable? There are no two patients alike, no two cases the same, every sufferer displaying a variety of nasty symptoms. Some patients are effected lightly and able to live a long and fairly productive life. Others sadly, are on an express train ride, being stripped of abilities, independence and dignity along the way.
Any life threatening illness, or degenerative disease changes everything, and undergoing unpleasant tests, suffering various symptoms and pain, relying on a cocktail of medications, knowing your life is never going to be the same again - at the end of the day, it doesn't matter what the diagnosis; no one wants to be ill. Most people, thankfully blessed with good health, simply have no idea what it's like to daily battle a disease that never takes a break or goes into remission. The debilitating effects of Parkinson's and knowing what lies ahead are what worst nightmares are made of. Unless you suffer from Parkinson's or are a caregiver, you cannot imagine the destruction left in its wake, leaving a shell of the former person you once were.
If I thought of what lies ahead of me, and all my family will have to endure, I would probably not want to see another day, so these negative detrimental thoughts are quickly dismissed. I prefer to keep optimistic and cling to hope. You may well ask, what is it that keeps me going? From where do I find the strength of spirit and determination? Is it merely the basic instinct of human survival? I would have to say its something more, something not quite tangible that I was born with, a stubborn streak that refuses to give up hope. What also helps me get through each day is my amazing steadfast husband and family and friends who unwaveringly stand by my side. I have always been a fighter, and having endured much in my life, I will battle on relentlessly, and refuse to give Parkinson's the satisfaction of having beaten me. I am an optimist at heart, endlessly dreaming of a cure being found, but time is of the essence, and time is running out.
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