29/01/2015 07:34 GMT | Updated 30/03/2015 06:59 BST

The Pains of Parkinson's

Parkinson's disease is fiendishly malicious, and often doctors don't get to see patients at their worst times of the day, when they suffer the many cruel symptoms of this degenerative disorder. Once the Parkinson's medications kick in, granting a little reprieve from the constant unpleasant effects, speaking personally as a fellow sufferer, I feel frustrated when anyone seeing me at my best, remarks how well I look. I often think to myself "If only they'd seen me an hour ago, they'd have a completely different picture and understand what I go through". Generally the first symptom that jumps to mind when someone hears the name 'Parkinson's' is shaking! Unfortunately there is so much more to Parkinson's than just shaking.

I was fortunate, when recently, my doctors finally saw me at my worst. This is the first time that they really got to see with their own eyes, Parkinson's in action. Maybe the word 'action' is not entirely the correct term, for when having a bad time, or 'off'(meaning the medications are not working) I am far from active. It's like walking through thick glue. I can hardly stand, walking regresses to a slow shuffle, and everything becomes a huge effort. It's almost as if Parkinson's is mocking me, for when the medications are working, I'm able to function to some degree, and one could hardly imagine what this disease gets up to, given half the chance!

Most people are awoken each morning by an alarm clock; the sun that streams through their bedroom window, or maybe some are woken by a tender kiss from their loved ones. Before I've even opened my eyes, at an unearthly hour, I am awoken by pain. Pain and I go way back to when I was a child, diagnosed at five years old with 'Gaucher', a hereditary rare disease. At the age of 44, additionally diagnosed with Young On-Set Parkinson's, pain and I are now very well acquainted as are many Parkinson's sufferers.

There appears little to ease the pain a Parkinson's patient experiences first thing in the morning. The stiffness and rigidity that set in during the night, leave one feeling like a stiff board. Just rolling over or getting out of bed becomes extremely difficult and takes tremendous effort. Many living with Parkinson's, may experience, like myself, painful curling toes, that go into such tight muscle spasms, I'm surprised the bones in my toes don't break. I have yet to find a suitable remedy for this all too common a symptom.

The only partial relief I have found to this problem, is sitting on the shower seat and running hot water over my feet. Heat generally loosens muscles, so this helps to some degree, and by taking action, I find that doing something is better than nothing. Concentrating on anything, such as running hot water over my feet, is almost like a placebo effect, and whatever works, even temporarily, can bring relief both physically and emotionally. If anyone suffering Parkinson's has come up with something more effective, please leave a comment below. I'm sure we'd all appreciate sharing any helpful tips that may make life just a little easier.

People don't understand why I'm not able to uncurl my painful toes, and to simply relax the muscles. Family and friends were mystified why I couldn't control my toes that appeared to have a mind of their own. It's neurological and not a case of mind over matter to control this strange symptom of Parkinson's. Every patient is different, what works for one person, won't necessarily work for someone else, so always consult your doctor/neurologist.