Car parking fees

Being charged for the car park in a hospital just doesn't sit well with me. I find this almost callous and heartless. I hardly think someone goes to hospital for amusement or with the intention of having a good time! One is there for a jolly good reason, and would probably much rather be somewhere else entirely. People who are hospitalized for long periods of time, or have frequent tests/checkups, the cost incurred to the family on top of everything else they must be going through, just isn't right. Are hospitals so insensitive and pitiless by adding insult to injury, anyone having the misfortune to need regular hospital visits, also then have to pay for parking? I realise funding and budgets probably dictate relying on this steady income, but I do wish the hospitals would re-think this policy. 

A welcome break

Yesterday my daughter took me to a shopping mall for a few hours, and the outing was a delight, looking at the vast never ending array of shops displaying their colourful wares. My daughter got quite a “work out”, as pushing even the lightest person in a wheelchair, is still hard work. For me to get out of the house and see some life, was a very welcome break. I would never have managed to go around all the shops and enjoy the morning pain free, without the aid of my wheel chair. Walking short distances I can manage, but a mammoth shopping expedition proves far too much for me. We ended up not buying the illusive handbag I am in search of, but this was of little importance as it was a thoroughly enjoyable morning, and for me there is nothing more precious than spending time with my daughter.

Out of the mouths of babes

Waiting in the pharmacy, a woman and her young son were standing in front of me being served. The little boy who was no more than 6 or 7 years old stared at me fixedly. Eventually edging a little closer, he said to me "my grandpa walks funny like you, and he has a stick like yours." I smiled broadly hearing such honestly spoken words. Upon seeing me smile, the little boy continued, "my grandpa can take his teeth out, can you?" At this, I burst out laughing and shaking my head vigorously, I replied "no." The boy's mother also amused by her son's observations, smiled apologetically at me but before she could divert his attention elsewhere, he asked yet another question, "my grandpa's hands shake cause he's got the Pinkinsuns, have you got Pinkinsuns?" I was smiling from ear to ear at his highly amusing conversation, and told him I did indeed have Pinkinsuns! As the embarrassed woman dragged her son out of the pharmacy, he shouted over his shoulder one last comment "my grandpa says my smile can light up a room." Still grinning, I looked around the pharmacy at the other people waiting. Everyone had been listening to our conversation and there was a smile on every face. Grandpa was right; his grandson's smile could light up a room!

No More Snail Mail

I am constantly amazed at how the Internet today has made the world such a small place. Contact can be made between strangers, who would never have had the opportunity of establishing communication without today’s technology. From the comfort of one’s home, you literally have the world at your fingertips. However, I do miss the old fashioned hand written letter. Buying pretty stationary is a thing of the past, and I cringe when I see people using abbreviations for texting phone messages which has become a language all of its own. I think e-books are a wonderful addition, giving one the ability to carry an entire library, no matter where you go. If staying in hospital or going away on holiday or business, one has an endless selection of reading material.  However, the printed book that can be held, turning the paper pages and leaving creases in the spine, to my mind will never lose its appeal. The book is here to stay. I guess I’m an old fashioned girl at heart!

Positive Parkinson's site

I was contacted by someone who has created the most amazing Web site for Parkinson's. This is no ordinary site! It is simply inspiring, and I highly recommend taking a look. The sight is like no other I have seen. One can browse the Internet and find all sorts of very useful and helpful information about medications, clinical trials, diagnosis, symptoms and what to expect, but nowhere have I found a site that is aimed solely at keeping one's spirits up. The site’s goal is the same message that I am determined to get across through my poems, public speaking and to anyone who will listen. It's so nice to know there are others out there with the "happy gene"! Take a look at this uplifting "Positive Parkinson's" Website  www.positiveparkinsons.com or send it to someone you know needs a lift.

A Complimentary Mistake

I entered a ladies clothing shop some while ago, and before I had the chance to peruse at all, the sales lady was standing before me, as if she had a nasty smell under her nose, looking me up and down and in quite a matter of fact way said, “there’s nothing for you here”.  I was lost for words (which doesn't happen often), feeling insulted and somewhat like the character in “Pretty Woman”, I abruptly turned around and with as much dignity as I could muster, hastily left the shop. It was only later as I retold this story to a girlfriend, that I felt a whole lot better. The shop I had unknowingly entered, was in fact for larger sized ladies, so what I had deemed as an insulting shop assistant, was in fact a compliment, as she merely meant “we don’t stock anything small enough to fit you”!

Scales that lie!

How to discover if your bathroom scales are accurate: get three members of your family to weigh themselves, and should you all be exactly the same weight ……well there you have it! Unaware that our scales were incorrect, I was blissfully under the illusion that I was at the correct weight. I should have suspected something when our washing machine decided to shrink only my clothes! So I think it's time to replace our scales and get new ones that tell the truth, however harsh! 

Always be Prepared

Going on holiday I've found planning ahead military style is highly advisable. I always make sure I have enough medications to see me through the days we'll be away, and a little extra to cover any unforeseen delays returning home. I never put my medications in the suitcase just in case luggage goes astray, so always keep a bag containing all pills in my hand luggage. A laminated card stating what medical conditions I suffer from along with details of any medications that I am allergic to, is always tucked inside the bag with the pills. I was a Girl Guide in my youth, so I guess their motto "always be prepared" has stuck with me!

Traveling abroad

Traveling abroad is not easy when disabled and before even embarking on a journey, I know what lays in store from previous experience. The last time I flew, was several months after hip surgery; not the best time to make a journey, but sometimes family affairs dictate. Flying economy, there is little space for a healthy nimble person to get in and out of an airline seat, but for someone after hip surgery the difficulties were extreme. Just getting into my seat, required moving and positioning my body in the most detrimental and painful position. The worst part was once all the passengers had settled down, eaten, lights dimmed, and reclined their seats to take a nap. I'm sure everyone has experienced this scenario at one time or another when flying. The person in front of me reclined his chair, subsequently he was virtually laying in my lap, rendering me incapable of moving. Even a contortionist would have to make some pretty impressive moves to extricate oneself from such a confined position. Hence I try to restrict my flying to a minimum. Isn’t that why cruising was invented?

Learning from experience

I once stayed at a hotel attached to a hospital, and upon making the reservation, I informed them I was disabled. I asked if no ground floor rooms were available, was there a lift? as I have difficulty in walking and use a crutch. They assured me they had a lift and a suitable room had been earmarked for our stay. Upon arriving, we found there was a large lift taking us up to the 2nd floor to our room. However, one look at the bathroom, it was clear that the lady who had taken our reservation did not fully understand the meaning of a "disabled friendly" room. There was no shower cubical, only a slippery porcelain bath tub  (with no rubber bathmat) which was so high, I could not lift my leg over to get in. The shower was fixed to the wall at one end of the bath, but there were no bars to hold on to, just a flimsy shower curtain that surrounded the bath. Not only was this bath/shower dangerous but highly unsuitable for a disabled person. I learnt one has to be very specific when booking a hotel room, even if you think you've made yourself clear, the reservation clerk might have no idea what being "disabled" really involves. One learns from experience!

Gaucher Conference

I attended the yearly Gaucher Conference last night, and it was great seeing so many familiar faces; other patients I've come to know over the years and share much in common, the marvelous team of doctors and nurses who take care of us all, and representatives from the various pharmaceutical companies who provide the very necessary drugs to keep Gaucher Disease under control. Although this conference is held only once a year, it is a great opportunity to get together, and speaking for myself, simply being with everyone is supportive and comforting, knowing many of these people for over 20 years, they are almost like extended family. Thank you to all those who helped organise last night, which was a most successful and enjoyable evening.

Growing old gracefully

Discussing colouring hair with a friend, I began to realise that I am in the minority, as most of the women I know, are not sporting their natural colour. I was asked when I would start to colour my hair, as some very persistent grey hairs are appearing and threatening to take over! Without hesitation I said "I had no intention of ever colouring my hair". My friend was horrified, until I began to explain my theory. I feel my hair colouring matches my face, which thanks to mother nature, is also showing signs of aging. I am no longer 21 with dark brown hair and a smooth unwrinkled young face. I am now 48 and think the lines by my eyes reveal I have laughed a lot; my grey hairs I rather like, I've worked jolly hard to get them, and they simply show that I have a story to tell. I saw a lady the other day, with long grey hair tied neatly back in a bun. She was so poised and elegantly dressed, I almost stopped her to let her know how great she looked. I think growing old  gracefully, finding the right balance whilst retaining style is to be applauded.

Spontaneity

It was a rainy, chilly night, and at the last minute without prior planning, I happened to be in the neighbourhood of my cousins, so I dropped in spontaneously for a visit. Just as I got out of the car, the heavens opened and the rain came down in a deluge. At my slow shuffling speed, from the car until the front door of their house, was enough time to get soaked through, but it was well worth it. Sitting next to their fire drying off my clothes, hands cupped around a steaming cup of tea, I thoroughly enjoyed a couple of hours   companionably chatting. We are never short of conversation. My mother always said that being a "chatter box" was genetic and that it runs in the family. I guess she was right. It was a lovely evening, and proving that spontaneity can often be most rewarding. I guess what I'm trying to say; don't let any opportunity pass you by, make the most of every moment spending time with those you care about.

The ministry of funny walks

If you are a fan of Monty Python, you may remember the sketch about "The Ministry of Funny Walks". On occasion my walking gets so bad, that I keep my family well amused with my own personal rendition of "funny walks"! Finding the ability to laugh at myself and circumstances that are beyond my control, I believe is a considerable asset in keeping my spirits up and of those around me. I am a constant source of amusement and entertainment to family and close friends, who I hasten to add, laugh with me and not at me! I have become the master of shaking cocktails in our house, and the salad dressing jar too! Even holding a cake that had just been iced, my tremors shook the cake just enough to smooth out the wet icing leaving it smooth and glass like. If you look hard enough, you'll always find something good in any situation, just turn it around and look from a different angle.

No more ice-cream sundaes

Having Parkinson's my appetite is often very poor, and I can easily go without a meal here or there. Aware of how important a balanced nutritional diet is, I try not to skip meals and pay close attention when I feel I don't want to eat anything. I make sure I eat something, however little, just as long as it's food, but somewhere during the past few months, I must have unconsciously given myself permission to eat ice cream sundaes when nothing else appears appetizing to me. Having no large mirror in our house, when visiting friends yesterday, I was horrified to catch a glimpse of myself in their full length mirror! I suddenly realised that I may not be eating that much, but the ice-cream sundaes were certainly making their existence known. So today is a new day, and no more sundaes for me! Finding the right balance is obviously harder said than done.  

The best medicine

Never miss an opportunity to celebrate something. We had a wonderful evening with friends, who we feel we've known forever, and yet are relatively new in our lives. Having good friends sitting around the dining table, sharing a meal together, the laughter that filled our home last night, warmed our hearts and made us thankful our paths had met. I'm sure it happens to everyone, that occasionally you meet people with whom there is an immediate affinity; you just 'click'; almost as if you've always known each other. I was so busy laughing last night, I was barely conscious of the relentless pain and exhausted state that is unremitting. Clearly laughter is the best medicine! 

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.