I consider myself lucky

Despite suffering two incurable chronic diseases, I consider myself very lucky. Many people go through an entire lifetime, not realising what blessings have been bestowed upon them, unable to see the wonders surrounding us all, or appreciate other people who affect us and are equally touched by our presence. To live a life with one's eyes shut and heart closed, is lonely and unfulfilling - a wasted journey in my mind. Having the ability to see the entire picture and fully embrace life with everything it has to offer, even when things go awry, is a much better route. Life has much to offer and should be grasped with both hands, open heart and seized each day. We do not know what lays in store, where our path in life is leading us, so making the most of this journey is imperative. Being open, honest and with strength of one’s convictions speaking the truth. Complete acceptance, appreciating fully those who share your life, and loving unconditionally to one's full capacity; this is how I live my life. It may not be for everyone - but it works for me.

Great Tips

I spent yesterday morning at a cooking demonstration having a lovely time, enjoyable company, learning some new cooking tips, and then eating a delicious lunch. Two tips in particular caught my attention, from a Parkinson's point of view. Having poor dexterity in my fingers, peeling cloves of garlic is not only frustrating, but close to impossible. By smashing a whole bulb of garlic with a wooden mallet easily separated the cloves, which were then put into a stainless steel bowl, with an identical bowl place on top (creating a domed effect). By holding the two bowls in place and shaking vigorously (the shaking part is no problem!) after just a minute, the fine paper like skins had miraculously come off the individual cloves. The other amazing tip was something I had not seen but has possibly been on the market for a while. Silicone circular disks (they come in 3 different colours and sizes) which can not only be used as saucepan lids, but more interestingly to a PD sufferer, can be placed on top of a bowl and once pressed down, create an airtight seal - much like using cling wrap. I HATE cling wrap with a vengeance since having PD, and struggle and fight, often throwing it back in the drawer in pure frustration. So guess what I'll be on the lookout for when my daughter takes me out today!

Enzyme Replacement Therapy

Having Gaucher disease, I receive enzyme replacement therapy in the form of infusions twice a month. Yesterday morning the smiling delightful nurse arrived, promptly as always, and I was hooked up to the i.v. line. I have a stand on wheels, so am able to move around, but a little limited as too much movement alters the speed of the drip. Several months ago, whilst having my treatment, my next door neighbour, who has become a close friend over the years, knocked on the door and asked me in for coffee. I stood in the doorway with stand in tow, and she didn't bat an eyelid, so I followed her in, wheeling my stand alongside I had morning coffee at her house. The medication takes an hour and a half, but the time went by very quickly, having chatted nonstop discussing everything from baking, the new headmistress at the school, local elections, pros and cons of using real butter as opposed to margarine, and of course no worthwhile discussion would be complete without a short debate on world peace! We sipped coffee and munched on the freshly baked biscuits still warm from the oven, by which time my treatment was finished. Having a wonderful next door neighbour is a huge plus, but I had to laugh at the comic scene of going from our house to next door with my i.v. and stand. I don't think there are too many places one could do this. Living in a small friendly village definitely has its plusses. 

The rippling effect

Nothing happens by chance or co-incidence. I was at a lovely function yesterday, and met a charming lady, with whom I had a wonderful conversation. I told her about writing the collection of Parkinson's poems and how this whole project has rapidly grown far larger than I would ever have dreamt. It turned out that she works for one of the large pharmaceutical companies who make one of the PD drugs that I take. Now you may think this was a random meeting, but I call it "fate"! Several weeks ago, I was invited to speak at a luncheon about "living with chronic disease whilst maintaining a positive and cheerful attitude", and during my talk, I mentioned how like throwing a stone into a pond, the rippling effect spreading outwards touches all those around. Yesterday, someone especially dear to me, said these very words to me, and yet she had not attended my talk, so had no idea I had said this very same thing to an entire audience. I don't know why I was destined to meet this lady from the pharmaceutical company yesterday - but maybe it's yet another ripple in the pond!    

Pretty shoes

What woman doesn't like pretty shoes? I have to admit, when walking past a shoe store, captivated, my eyes are quickly drawn to elegant high heeled, but totally impracticable shoes. Sadly, needless to say, I can no longer wear such stylish eye-catching footwear. I now buy sensible, comfortable sneakers for the winter, giving great support for my arches. In the warmer weather, I wear orthopedic sandals, which are about as exciting as a left over cheese sandwich which has been sitting in the fridge for two days! All summer I was searching for a pretty pair of orthopedic sandals, and was bitterly disappointed by the absurdly poor selection on offer. Just because a sandal is orthopedic, doesn't mean it has to look boring and something even your grandma wouldn't wear! Why can't the manufacturers make pretty, elegant, "I've got to have a pair of those" orthopedic sandals?

Heavy Machinery

I always read carefully the little slip of paper that is inside any box of pills, and often wondered what the pharmaceutical companies actually mean when warning: "do not operate heavy machinery whilst taking this medication". If they are worried about me driving a tractor, operating a cement mixer or using a chain saw, they need worry no more, since we don't own any of these items! Would a washing machine fall into the category of "heavy machinery"?, as our machine weighs a ton. If yes, then I presume one can legitimately delegate the laundry to another member of the family. If this is the case, our dish-washer is also pretty heavy! What exactly is considered "heavy machinery" by the pharmaceutical companies?

Getting a kick start

When walking, and I use the term very loosely, for it's more of a slow shuffle, I occasionally come to a grinding halt. It's as if someone has put on the brakes for me without asking my permission. The first time this happened, it was the strangest feeling, but it is now common place and part of my ever changing life. Normally my husband or daughter give me a little gentle kick behind the heel of my left foot and this forces me forward and I continue walking. It's a bit like giving a kick start to an old car! Someone told me recently that they use a verbal command which usually does the job. I have not heard of this before, but shall certainly give it a go. I think exchanging tips and good ideas is wonderful. Sometimes the smallest of things can make a difference. My PD meds are spaced at various intervals during the day and I was having terrible difficulty in remembering to take them a the right time. My daughter came up with a great solution, by putting an alarm on my mobile phone (which is always with me) reminding me to take my pills at the right time. If anyone has any helpful tips - do share them.