Meds on time

Taking one's medicines on time is vitally important with Parkinson's disease. Gaucher disease, treated by an enzyme replacement therapy via infusion is not the same and can be delayed by a few days, with no ill effects to the patient, as it works in a very different way from Parkinson's medications. I always take a small pill box with me in my handbag, containing pills I will need whilst out, plus extra just in case we end up staying later than expected. When hospitalised, it is crucial to continue one's regimen, but this can sometimes prove problematic. You may find yourself in hospital regarding a completely different health issue, and end up in a ward, for instance the orthopaedic or oncology department, where the staff, as wonderful as they may be, are not specialists in Parkinson's and don't necessarily understand how vital it is to take PD medications on time. Most know the crucial timing of diabetic meds, but Parkinson's medications if not taken at the right time can also be detrimental, and set one back considerably. I have a paper written out with all my pills, dosage and time of day to be taken which goes with me into hospital. It can be attached to a chart at the end of my bed and I hand an extra copy to the doctor to put in my file.

In America The National Parkinson's Foundation has created an entire kit in a handy bag for one's medications, along with pads especially for you to fill in details of your pills. They also include a metal bracelet with "Parkinson Disease Alert" written on it, for there are many patients who have difficulty in talking, so by wearing this, hospital staff should be alerted to your special needs. However, if one is required to have an X-ray, MRI, any scan or operation, we all know that all jewellery etc. must be removed, so my suggestion to the Parkinson's Foundation is; a plastic wrist band, the type one normally wears in hospital, should be added to this "Kit" with one's name and "Parkinson patient" written on it so that in hospital this doesn't have to be removed at any point.

Slow like a tortoise

Years ago I used to be a very fast typist, but as Parkinson's progresses, my speed is slowing down considerably. My right arm has become extremely painful for the last few days, making it even harder than usual to accomplish anything. Whether this is down to Parkinson's or Gaucher - who knows! However, it has rendered me to typing with one finger on my left hand, which is the side of my body most affected by Parkinson's. Doing things with just one hand is very difficult, and time consuming, but like the famous tale of the tortoise and the hare, I may be slow, but I'll get there in the end. 

It's not my life that is complicated, its just my health that is complex. Anyone suffering more than one disease will no doubt find that there are many symptoms that overlap, and often cloud the issue, making it hard to distinguish what exactly is manifesting itself. I feel like a car that is long over due for a good service and overhaul. I wish it were that easy. When my car had a puncture, it was fixed that same day, old worn tyres were replaced with new ones, when a light bulb goes, a new one is put in its place. At the back of the garage there was a sign that said "Body Workshop" - I smiled to myself, imagining for one moment some space age scenario where you could walk into a machine and at a flip of a switch all one's medical problems would be sorted. Now how cool would that be? But from all the banging and  noise emanating from the "Body Workshop" I was quickly brought back to reality and it was clear that only cars were behind those closed doors. I will bid you farewell for today, as I can't write any more - my one finger is getting tired of typing! 

A moment of despair

This poem was written in a moment of despair during the night when my body racked with pain; I was unable to sleep or find a comfortable position for a moment's relief. This is what it feels like when Parkinson's is at its worst. Despite my devoted husband laying by my side fast asleep, I couldn't have felt more alone in the world. Most patients suffering PD wont mention "down moments" like this, let alone write about them for all to read. I therefore felt it important to share this poem with you today, not with the intention of making you sad or depressed, but merely to illustrate how this degenerative disease slowly but surely steals away one's life and what goes through a sufferers mind in desperate moments.

A Beacon

I once was a shining beacon,

For all the ships at sea.

My light was bright and ever shone,

A full life awaited me.

But now my light is fading,

It flickers and splutters by day,

At night can barely be seen,

As it meekly fades away.

A tiny ember where a flame once burst,

Sadly now all remains to see,

One day a gust of wind will blow,

Snuff out the light and set me free.

Written by Elaine Benton© 2013

Marking the years

As each year passes by, birthdays come and go, life somehow seems to speed up. When we were children, with excitement we couldn't wait for each birthday, growing older, reaching one's teens and then early twenties. The anticipation of being independent and to leave one's childhood behind are grasped all too quickly. Now later in life, we don't make a fuss of every birthday, however, when it's a special round number, such as 40, 50, 60 or more, I think it it's appropriate and even necessary to mark the occasion, sharing in celebrating, not the fact of growing older, but the fact you were born. This gives all those around you, family and friends, the opportunity of letting you know how special and important you are in their lives. 

It's funny how some people count the number of years they've lived in a particular house, stayed in a certain job, or what I've encountered recently,  how many years since diagnosis of Parkinson's! We all have anniversaries for something that bares personal importance and significance.

So if you have a special birthday, don't let the number of years deter you, celebrate with full gusto, enjoy the moment and live with intention!

What day is today?

I had a good laugh with a friend the other day, as we talked about not knowing what day it is. Now if she happens to be reading this, she'll be thinking "Oh no, Elaine's writing about me". Don't worry - your identity remains secret! 

When one doesn't work and is housebound, the days can run into one another, and on occasion, I must admit, I don't know what day of the week it is. Apparently I am not alone, as I found others have the same difficulty, but without the excuse of having Parkinson's and being at home with no particular schedule. Maybe that's why I write a daily blog; just so I'll know what day it is! No, I only jest. My wrist watch has the date on it, but with poor eyesight, I can no longer see the date. Thank goodness the date is a little larger and clearer on my mobile phone and computer. In a local retirement home, I noticed in the day room, a large board with the day of the week, date, month and year clearly displayed. The staff pay attention to change this board every morning which I'm sure is of great help to the residents. 

The hospital I attend have large wall clocks in each ward, but no date. Perhaps if and when they need to replace these clocks, they could purchase something that not only tells the time but the date too. Being hospitalised, and completely thrown out of one's normal routine, understandably one hasn't a clue what day it is, and often without my watch, phone or computer, I am quite lost, especially if it's a long hospital stay. 

Some years ago, when my mother was being assessed and finally diagnosed with dementia, one of the questions asked was: "What day is today?" Knowing full well that my mother didn't know the answer, I had to smile at her ingenious answer that she said with a big smile and a humorous lilt to her voice; "It's the day after yesterday and the day before tomorrow!" This didn't fool the psychologist however, as she had heard many a creative answer before, but she did give my mother a big warm smile at her resourcefulness. Zero for getting the answer wrong, but 10 out of 10 for effort!

No energy

Of late, my energy levels have been so low, I literally feel as though I am fading away. Fatigue is a symptom not only of Parkinson's but Gaucher too, so I am endowed with a double dose. How lucky am I? It is difficult to describe the severity and extent of this tiredness, for the word 'fatigue', 'exhaustion' or 'depleted' don't seem strong enough to fully express what I am experiencing. Sometimes I can barely speak, and feel so bad, I can hardly function at all. Well meaning and caring people keep telling me to not do so much; rest, have a nap, but this scarcely helps and does not solve the problem. Long term fatigue takes its toll and cannot be resolved easily. Fatigue in Parkinson's can be caused or made worse by slow movement, muscle stiffness and when medications during the day start to wear off. These fluctuations effect mobility and often I find the best time for me is first thing in the morning, so I try to take advantage of this and get the things done that I need to, but doing too much - again leads to fatigue, so pacing myself is crucial. There is also muscle fatigue, painful cramping, tremors and shaking which all put stress on muscles making them work very hard. Who needs a membership to a gym when you have your own private work out from Parkinson's for free? It's like a vicious circle - there is no end.

My latest article for The Huffington Post has just gone up on-line if you'd like to take a look.

Wishing you all good health and an enjoyable restful weekend.

Do loved ones really understand?

Probably sick to death of hearing me talk, family and friends think by now they know all about Parkinson's, it's symptoms and side effects of the drugs. It's a little like making someone sit through two thousand photos you took on your recent holiday; however enjoyable it may have been for you, no one else is really that interested, and there is only a certain amount they can stomach. But I'm talking about ill health and not holiday snaps, so as time goes by, and the disease progresses, I think they are beginning to understand how little they actually comprehend about this degenerative life altering disease. At a family luncheon last weekend, the alarm on my mobile phone went off twice during the short time we were there, reminding me to take my pills. As anyone with Parkinson's will no doubt understand the importance of taking medications on time, this precision came as a surprise to my family sitting around the table. I don't think they realise that I'm battling for my life. Each day I strive to keep positive, as active as possible, and refuse to let my disabilities get the better of me. Without my fighting spirit, I'd be up the proverbial creek without a paddle!

I'm in contact with a number of well established authors, and I asked them, "When is one considered an 'author'"? The answer I received came back loud and clear. If people are interested in what you have to say, are buying your books, reading your blog and articles - you can safely take on the title of "author". When my first book was published in 2011 and I started writing a daily blog, I had a small number of readers/followers, but to my astonishment now in 2013, family and friends are unaware, that thousands around the world in over 70 countries, are reading my work. All the effort and hard work I have put into this campaign is not completely understood by family and friends, and yet the wider public 'get it'. How strange that those closest to me, see only who I once was, and cannot adjust to a new picture. Maybe love gets in the way, and it's simply too painful for those who know me personally to grasp what is happening to me, and not through lack of care, but they just don't want to hear any more.

A fellow author, Jill Sadowsky, who is a true inspiration to me, has become a good friend. A woman of great courage and strength, she also carries a message to the world and like me, is on a crusade to bring greater awareness whilst offering support to those in similar circumstances. Jill also writes a daily blog, and I would like to share with you, a line that literally made me stop in my tracks. The words written by her late son, are so powerful and poignant, I think anyone suffering ill health can appreciate how this special young man who was loved dearly by his family must have suffered.

"Anyone who thinks that dying is the worst thing that can happen in the world, doesn't know the first thing about life." (Taken from "David's Story" written by JillSadowsky.)