Parkinson's does not define you

At a Parkinson's event some time ago, I found people coming up to me saying they'd got Parkinson's, or caregivers would tell me their wife, husband or parent had Parkinson's. As I listened, I became acutely aware that nobody was thinking of introducing themselves by their name, but instead referring to Parkinson's first. It's often not what you say, but the way you say it. When introducing myself, I say "hello, my name is Elaine Benton, and I'm an author." I then may go on to speak about Parkinson's if it's relevant to the situation. The difference to me is monumental, as I see the person first, and not the disease. If you are an individual who happens to have Parkinson's, make sure you use YOUR name and don’t give Parkinson's the honour of being introduced first!!! You'd be surprised at how many people forget to say their name, or what they do, where they come from, all of which seem incidental to them, as they launch into "I've got Parkinson's". There is no doubt that as a fellow sufferer, I whole heartedly agree and admit this lousy disease rules much of our lives, and it won't go away. It irritatingly makes itself present in a pesky way, much like a three year old child who has had too many sweets and hyped up on sugar just wont sit still or go to bed. Don't give Parkinson's the satisfaction of being more important than you. You are a unique, special person, and I'm sure have interesting and wonderful things to say. So put Parkinson's on the back seat and take a ride in the front for a change. It may sound like a small difference, but the view is so much better!  

New Blog on The Huffington Post

Today I posted a new blog entry on The Huffington Post - Lifestyle Section, entitled "Parkinson's gift of insomnia". Writing from personal experience, I don't sugar coat anything - I tell it as it is with a touch of British humour. I am thrilled at the opportunity of writing on a weekly basis for The Huffington Post enabling me to get my message out to a wide audience.  Founded in 2005, New York USA, by Arianna Huffington, Kenneth Lerer, Andrew Breitbart and Jonah Peretti, the site offers news, blogs and original content covering a wide array of interesting topics. In 2012, The Huffington Post became the first commercially run, United States digital media enterprise to win a Pulitzer Prize. The Huffington Post is ranked the most powerful blog in the world by The Observer and Arianna Huffington was named in 2009 as number 12 in Forbes' first ever list of the Most Influential Women in Media. The same year she was ranked as number 42 in The Guardian's Top 100 in the Media List. On July 6th 2011, The Huffington Post UK edition was launched, and now appears in various languages around the world. I hope you will take time to have a look at my blog, and please feel free to leave a comment. Feedback is always welcome.

Lost and found department

Being housebound most of the time; when the opportunity arises to get out, I jump at it. Like an enthusiastic teenager (in my mind I hasten to add) who's been offered reprieve from doing homework; with great eagerness, I put on my shoes, as quickly as a Parkinson's patient can be expected, and I'm ready to leave the confines of the house. This morning, I accompanied my husband who had a meeting near the sea front. So here I sit writing to you all, looking out of the windows of a café on the beach. It's early  morning, the sun is shining despite a fresh wind and a slight nip in the air, as I watch people take their daily constitutional along the promenade, walking their dogs or those with purpose in their step smartly dressed are off to work. The waitress brings my coffee and watching the sea, the waves and white surf crashing repeatedly on the shore, washing away the worries and chaos of life; even if for a short while,  I feel at peace and relaxed. Out of the house, seeing a different view, makes a very pleasant change and important for any disabled person. I see a young couple holding hands as they stroll along the beach and my mind goes back to the days when my husband and I would walk hand in hand. I loved to walk, whether it be the beach or the forest. Walking and exploring is something that Parkinson's has taken from me; a pleasure I've lost, and would dearly like returned. Maybe I should try the 'lost and found' department and see if anyone has handed in my 'lost ability to walk'. Sometimes it’s the simple pleasures, that when lost, leave the largest impact.

Cheese cake will do it!

I was hospitalized many years ago and upon being admitted, my blood pressure, blood tests and weight details were all noted. I was having a Gaucher bone crises, the severity of which necessitated hospitalisation as intravenous morphine was administered for the chronic pain. At night somehow, the pain seemed worse, and unable to sleep I wandered aimlessly up and down the corridor. A sympathetic nurse taking pity on me, knowing I couldn't receive a further dose of morphine for another hour, asked if I'd like a cup of tea. When in chronic pain, an hour can feel like an eternity. Desperate for anything to take my mind off the agonizing pain, I settled for the tea. A cup of tea, as you've probably gathered, how every kindly meant, doesn't really help at all. However, it made the nurse feel better, and she then had a further bright idea and offered me a piece of cheesecake from the fridge in the nurses' station. Now cheesecake is an entirely different matter, and although it does not possess any pain killing qualities; what it lacks in pain relief, it makes up for as a tasty distraction. Having enjoyed the tea and cake, I made my way back to bed. Shortly afterwards enough time had elapsed; I was able to receive the next dose of morphine, and so the night passed. The following night, I found myself in the hallway once more and the same nurse beckoned me to the nurses station where I was treated again to tea and cheesecake. This became a nightly ritual, no matter which nurse was on duty, my midnight snack had become routine. After about a week I was discharged from hospital but before leaving, they went over some tests, one of which was my weight. I had mysteriously gained weight during my hospital stay. The nurse checking again, said there had to be an error, and whoever had written my weight upon arrival must have made a mistake. I sheepishly owned up to my midnight tea and cake, to which she smiled and said "you must be the first patient I've come across who has put on weight in hospital!" I told her that cheese cake will do it!

My anchor

Stability in life is something most of us need, whether it be in a relationship, one's career/job or financial security. Feeling safe and being in control is a good feeling, but when Parkinson's or any degenerative disease decides to take up residence, life is never quite the same again. Control over even simple daily events become more challenging and feeling the loss of ability to be self sufficient and independent loom frighteningly near. People are generally at a loss when to offer help and when to step back and let me get on with things, and I appreciate that its hard to know what to do. I understand they do not want to seem unhelpful, but also don't want to make a big fuss when there is no need. I often see on people's faces the indecisive look of "should I offer t to help, or let her get on with it?" and realise this is a difficult position to be in. The one stable thing in my life that I can count on is my husband. His face is the last vision I have before going to sleep, and is the first sight I am greeted by in the morning. I am blessed to have a steadfast husband, who is my rock, and always there for me. Like an anchor, he provides the stability that keeps me on an even keel, as we journey the years together, navigating through life's turbulent waters. Parkinson's is changeable like the weather, and one never knows in advance if it's going to be a good day or a bad one. Making plans in advance, is always tricky, but the best advice I can give; is to simply take one day at a time.

Deep brain stimulation

Apart from the many medications that are on offer today, there is an option that for some who have become medication intolerant, is the only choice left. DBS - deep brain stimulation is a fairly invasive operation where a lead, made up of four insulated wires are implanted in the brain. This lead passes under the skin from the head down the neck to a small electrical device, much like a pacemaker which is the power source that when turned on, delivers an electrical pulse stimulating a particular area of the brain. Here is a link - I warn you, this is not for the faint of heart. It is extremely graphic and even I, who thought was made of cast iron when it comes to medical issues, found it quite difficult to watch. Knowing several people who have undergone this procedure, I take my hats off to you. I think it takes a great deal of courage to undergo such an invasive operation. Whilst the medications I am on continue to work well, having a DBS is not on my agenda for now. I have met some people who have had this procedure and it has only partially helped with their quality of life, whilst others have benefited very much. Some fellow sufferers in Australia have recently  undergone DBS and it has been successful. I believe someone is about to undergo this operation in the next day or two. I wish you good luck and a speedy recovery. My prayers and thoughts are with you. 

The Huffington Post

Trying to get my message out, has been jolly hard work considering my poor state of health. Yet it is this very state that drives me forward, determined not to give in, I battle two chronic diseases with a fighting spirit and a positive attitude. I have spent many hours writing, blogging each day, answering numerous e-mails I receive from around the world, and taking on occasional public speaking engagements. When one is talking about chronic disease, it is a topic that is far from sensational or sizzling; therefore it is understandably harder to get people interested or to listen. Most have not heard of Gaucher disease, justifiably so, as it is a rare disease with only approximately 10,000 patients worldwide. I am also trying to reach fellow sufferers / care givers, and to make the general public more aware. Everyone has heard of Parkinson's, yet it's surprising how many assume it is a disease affecting only the elderly, when in fact the number of young onset Parkinson's patients is increasing. Generally people associate Parkinson's with simply shaking, and are not aware of the many unpleasant symptoms that patients suffer from with this degenerative disease. I was therefore thrilled and delighted to be asked by TheHuffington Post, to write a weekly blog for their Lifestyle Section and am very grateful for this opportunity. With a worldwide circulation, I hope to further my campaign of reaching others in similar circumstances, offering support and bringing greater awareness to issues that are close to my heart.