Faith

Parkinson's can affect anyone - it's not fussy, and doesn't discriminate, no matter what age, religion, what your background is, where you live, if you are rich or poor, whether you're old or young. Having faith, whatever your religion or beliefs, gives many people the strength and conviction which helps them accept illness, disability and even death as part of an eternal plan that we do not have any control over. Some might see these as lessons in life or some sort of initiative test we have been assigned. Maybe it is simply human nature to want and need to believe in something. Whatever your beliefs, one's faith understandably might truly be shaken up in times of great hardship, particularly when illness is involved,  making us re-evaluate our belief system. Why do such terrible things happen to good people? Blindly having faith that makes us close our eyes and believe, may give some the strength to carry on, but others can become disillusioned and discover their faith slips away. Don't worry what others may think, do whatever works for you, and what is ultimately in your best interest. 

Call for Help

Having Parkinson's for several years now, my family know me only too well, and over time have come to recognise the signs when something is wrong, if I'm in pain, or simply having a bad Parkinson's day. Particularly my husband and daughter know instantly when I call out for help according to the intonation in my voice. Getting dressed can be quite a challenge, and if I get stuck in a piece of clothing, not able to put it on fully, or remove it altogether, my cries for help are unmistakable, and who ever comes to my rescue usually gets a good laugh seeing me unable to escape my confinement, entangled like Houdini in one of his famous acts. So you see, I do try my best to keep the family entertained!  If I shout in an urgent fashion from the bedroom that I need a bucket; fast as lightening, a bucket appears by my bed, as little explanation is necessary, for it is quite clear, feeling nauseous I probably wont make it to the bathroom in time. There are other times when they hear something smash and me shrieking, which is often followed by some choice words that a 'lady' should never be heard uttering, as I accidentally drop and break something. But despite the difficulties that daily plague my life, never knowing if a day is going to be good or not; I live in hope. I hope you'll take a look at an article I wrote for The Huffington Post. Wishing you all a good weekend, and if like me, you suffer from Parkinson's, may you have more good days than bad.

Balancing act

It gave me great pleasure the other night, sitting around our dining table, looking at all the faces of my family. Everyone was busy eating, drinking, chatting and laughing. Taking it all in and enjoying the moment, I wanted to savour the feeling of complete contentment and sheer delight, entertaining those I love in our home. People are often very quick to assume that it is too much for me to have guests over, and in a way they are correct, for this takes a great deal of effort and energy, and afterwards it can take me a day or two to recover from this activity. Yet the emotional benefits of having people I care about come to our home for a meal, or even just coffee and cake brings fresh life into the house and the pleasure enjoyed most certainly is worth it. It's a matter of finding the right balance I've found, keeping up a social life and inviting guests, whilst making sure not to over-do things and take a day or two in-between events to recover. I try to think ahead and plan carefully, often making lists for myself so that I don't forget something. Being methodical and  organised by nature, helps me cope, and although it takes me twice as long as it used to doing anything, I somehow manage. As beneficial as it is for me to have guests visit, it is equally as important to my husband and daughter. Trying to live as normal life as possible taking into consideration my limitations is a continual  balancing act. 

A smashing time!

Our drinking glasses have been disappearing slowly but surely leaving us with an odd assortment. I have lost count of how many I've broken, but thankful they have been every day ones and not good crystal glasses, which I avoid like the plague. We eventually decided it was time to replenish our poor non-matching selection and bought several different size glasses, all in the same style. What fits my small unsteady hand is far too small for my husband's. They stack one in side another which makes for easy storing and seem quite robust. Having Parkinson's makes one look at everyday things that possibly someone else would not give a second glance. We were at a café and ordered coffee, but when the coffee was served, the handle of the cup was so small, I could not fit a finger inside, and positioned in such a way that I couldn't grasp the slippery porcelain handle securely enough. I ended up cupping my coffee with both hands as if I was in freezing conditions on a mountain side somewhere warming my hands. I don't know who designs these "fashionable" cups but they are a Parkinson's nightmare. Simple things like cutlery can make a difference too, with thick handles, it is far easier to hold. My toothbrush for instance has a very thick handle, and any pen I write with, also appearing child like, has a thick body enabling me to grasp it a little better. When buying something like drinking glasses, cups, pens or your toothbrush, before you purchase make sure you hold it in your hand and see if it is suitable for you. 

Medical marijuana

One of the many symptoms of Parkinson's is pain - some of which is understandable, but much of the pain is inexplicable, leaving the patient in constant misery. Latest research has revealed that genetic factors may be able to explain such pain, and new understanding will enable a unique treatment to be available. According to a recently published research paper in "The European Journal of Pain", variations of functions were observed regarding pain connecting to cannabis-like substances in the brain. The results of the Neurology Department reported that the results support the treatment of Parkinson's patients using medical marijuana. Further research is going ahead, looking into the use of cannabis for pain relief. A large percentage of Parkinson's patients suffer from unexplained pain, and if this symptom can be relieved, the quality of life will certainly be increased. The medical cannabis can be administered by liquid, (not dissimilar to an eye dropper bottle), thereby ensuring the precise amount is given by the exact number of drops administered under the tongue, for the optimum dosage according to each patient. Constant pain is very draining, and as the findings suggest, this could well be a future option for some patients.

Parkinson pains

Many don't associate Parkinson's with having pain, when in fact unfortunately, there is a great deal and variety of different pains experienced when suffering from Parkinson's disease. I'm especially lucky (forgive my British sarcasm!) for having a double dose due to Parkinson's along with chronic bone pains from Gaucher disease. A while back , I was able to differentiate between the Gaucher bone pains and those related to Parkinson's, but of late, the pains are so constant and almost everywhere in my body, it's now difficult to pinpoint what belongs to which disease. But most definitely Parkinson's is painful. Just to clarify; there is pain in my shoulders, upper arms, hands, fingers, arms, legs, torso, legs, joints, muscular spasms and cramping. These are to mention but a few. Simply turning over in bed or getting up in the morning is extremely painful and difficult. My doctor recommends me resting each day, but often I can't contemplate getting back into bed for an afternoon rest simply because it is just too painful getting up again. I often rest in a comfortable arm chair in the lounge with my feet up on a foot stool. Now the warmer weather is approaching, I will hopefully be able to rest outside in the garden, warming my painful bones in the sun. So if anyone out there thinks that Parkinson's is merely shaking and tremors, you are terribly wrong. Pain is a huge element of this degenerative disease, and dealing with constant pain is not only very wearing but quite often difficult to manage and find the right pain relief.

Catching a centipede

A friend of my daughter's is studying insects and her homework assignment, as strange as it may sound, was to collect 30 specimens of bugs. Deciding to help and take on this challenge, recently having earth delivered to our garden, I quite quickly managed to find a few every day common varieties. This morning, much to my horror, I found a brightly coloured centipede laying in our kitchen sink. Goodness knows how it got there! It was about 6 inches long and laying very still at first. Immediately thinking this would make an excellent specimen for the young lady studying entomology, the question was now how to catch the little critter with the household still asleep, and my lack of dexterity, extremely stiff painful fingers along with slow reactions, Parkinson's and I were going to have a tough time catching this unexpected visitor. I grabbed an empty clear plastic box and placed it over the unsuspecting centipede, only then realising how fast they can move as it struggled to escape its confinement. Great! now what was I supposed to do? I had no way of getting on the lid. I took a saucepan that was drying next to the sink, and for weight put it on top of the box, lest my captive should escape. Finding a stiff piece of plastic packaging in the bin, it made for a perfect solution, as I carefully slid it under the container, all the while the centipede wriggling and moving at great speed frantically trying to escape. Holding tightly the plastic sheet in place I was able to turn the box up and place the lid on top, sliding the plastic away. Now safely sealed inside the box, still no one was up to see the antics going on in my kitchen, and how despite having Parkinson's I had managed to capture the centipede alive. Why is no one ever around when these things happen? It's like watching someone commit a traffic offence when there's not a policeman in sight. Well after all this excitement, and it's not even 07:00, I think I will put the kettle on and make a hot drink. I hope your day starts "centipede free"!