Parkinson's doesn't discriminate

Parkinson's does not discriminate; it's not perturbed if you're young or old, rich or poor, what religion and background, or the colour of your skin. Parkinson's isn't bothered who you are, and like a school class bully, with no rhyme or reason, randomly decides who to victimize. To be diagnosed with Parkinson's is life shattering news, but early detection can make a big difference, especially regarding medications that work best when administered in the early stages, enabling optimal effect. Appropriate physical activity, should immediately become a part of one's daily routine, ensuring that mobility, range of motion, muscles and bones along with a healthy diet; all of which will give your body the best possible scenario to fight this disease that uninvited, crept into your life, hoping to cause chaos. Don't let it! Do all you can to keep this bully in the principal's office.

There appears to be a fairly new diagnostic imaging technique, and although still in it's early stages, this is exciting news. Hopefully in the near future, the system will enable accurate early diagnosis, instead of patients having to wait until the disease begins to manifest itself sufficiently, enabling a neurologist to ascertain a correct diagnosis. Early detection is the key. I was fortunate to be diagnosed very quickly, just three months from when the first tremors started in my leg. As I have explained before, my particular case is a little unusual, as my father and one brother, having Gaucher disease also had Parkinson's, clearly a hereditary connection in our family, making my diagnosis obviously that much faster. The imaging test which is still in its infancy, but sounds like it has much potential if used alongside clinical exams and family medical history, might be able to differentiate between the various PD syndromes. If you are interested, take a look at The Science Daily.

Why the sexy robes?

I received several e-mails asking the same question, and hope you don't mind that I answer you all in my blog today. I began to wonder how many others don't understand the reason for the "sexy robes" one often has to wear in hospital, if having an operation and during post surgery. I am sure you realise I am referring to the embarrassingly open down the back robes; exposing one's backside if you're not careful, with one tiny pathetic ribbon tied at the back of the neck! These are about as sexy as thermal underwear. As if this isn't bad enough, to top off the incredible ensemble, a disposable shower cap of sorts is added to cover one's hair. A more attractive look I cannot think of! Who needs a cold shower, when all you have to do is pop on one of these fabulous hospital robes adorned with disposable shower cap - and I can assure you any amorous thoughts are promptly dispelled. However, I digress, and now will answer your question as to "why" hospitals around the world insist on banding together, all using similar garments which wouldn't be found anywhere near a couture fashion house. The reason is very simple: when going into surgery, as soon as someone is unconscious on the operating table, like a dead weight, it is extremely difficult to physically remove pyjamas or even a regular night gown, not to mention wasting precious theatre time. By using these robes with a single tie at the neck, it takes but a second to undo, easily removing the robe, allowing the surgeon and team to get on with their job. Likewise, once the operation is complete, again it is far quicker and simple to put this unappealing robe back on the patient. If a patient is hooked up to an infusion or other paraphernalia, ordinary bed ware would get in the way, hindering the nurses in doing their job post surgery. So now you know there is indeed a legitimate and very good reason for this most unattractive attire. There is a lovely scene in the romantic comedy film "Something's GottaGive", where Jack Nicholson bares it all from behind in one these famous hospital robes.

Frequent hospitalisation

Having been hospitalized many a time, I absurdly refer to the hospital as my "second home"! Over the years I have come to know most of the doctors, nurses and staff in different departments. I would have thought by now, they'd offer me a deal; two visits for the price of one, or maybe a "frequent visit card"! With Parkinson's, I always have to ensure I've enough pills with me to cover my hospital stay, and I am held solely responsible for taking them. I always take with a list of my PD medications, dosages and times of day, so that the staff are aware of what I am taking, in addition to any medications that I'm allergic to, which I clearly mark in bright red. I had hip surgery a few years ago, and am so familiar with pre-operation procedures, I took it all in my stride. However, I did have to laugh when the surgeon drew a large arrow with a black marker on my leg indicating which one was to be operated, ensuring no mistakes once l lay unconscious on the operating table. The wrist band with my name on it, was reassuringly checked several times before I was finally wheeled into the operating room, where it is always so cold, I feel as if I've arrived at the North Pole. But alas no reindeer, cookies or hot chocolate, just a warm blanket was placed over me until the anaesthesiologist asked me to count back from ten, "10, 9, 8" is probably as far as I've ever managed to get before blissfully falling under his spell (or rather from the anaesthetic that's entered my veins). As long as I'm out for the count, and I can't see or hear anything, I'm just fine, and when I eventually open my eyes, I find I've magically returned from the North Pole and thankfully find myself in the warmer climate of the recovery ward. Even though the operation may have been a total success, it is ultimately up to the patient to make a full recovery, ensuring to follow any instructions, and physiotherapy being of great importance should be taken very seriously and done meticulously on a regular basis. 

Becoming a burden

My mother's biggest fear was becoming a burden to her family in her old age. When I was diagnosed with Parkinson's five years ago, I began to understand her almost obsessive fear, as I too now worry about the future and becoming a burden to my darling husband.  A book entitled "…and death came third!" written by Andy Lopata, states that in 1984 a New York Times survey was held on social anxiety. Odd as it may sound, the number one fear people had was walking into a room full of strangers, followed by speaking in public. What is amazing, is that "death" came in third place! Hard to believe, but you can't argue with statistics. I guess my priorities have changed very much over the years. Walking into a room full of strangers doesn't phase me, and I find public speaking is most definitely not a problem. Even the survey's third most common fear; death, has never worried me at all. I think my number one fear would have to be the same as my mother's, for being a burden on one's family is infinitely more distressing than anything else I can think of. I hope a cure is on its way and that I can enjoy a long life with my husband and grow old together. I want to be one of those couples you see with silver grey hair, wrinkles and lots of laugh lines, still in love and holding hands as they sit on a park bench. It's not much to ask for, and it may sound a small dream to you, but it's the dream closest to my heart.

Feeling the odd one out

Sitting at a friend's house having a get-together, I was looking forward to the prospect of stimulating good conversation, catching up on everyone's news; to laugh and generally have a break from the every day worries and concerns that engulf us all. As I sat there, expectantly waiting for someone to start talking, I realised I was the odd one out. For a change, I wasn't the odd one out for having two chronic diseases, but felt singled out for a very different reason. Each person was absorbed in either texting someone in great urgency, reading an e-mail that had just arrived necessitating immediate attention, apologetically making a phone call that could not be left till later, or typing a date into their diary of extreme importance. They were all so engrossed in their smart phones, that they appeared to have forgotten the purpose of us getting together. Eventually I opened my mouth, not able to contain myself any longer, and asked if anyone would like to actually talk. Their astonished faces were a picture as they suddenly all looked at me whilst still clutching their precious smart phones that they could not possibly function without, and I began to wonder where present technology has lead us. The possibilities and functions that these smart phones can perform are truly amazing, and without doubt a huge help in our busy lives, where time is precious and there never seem to be enough hours in the day. However, I don't think that our lives should revolve around a piece of technology (however great it is) or that the world will fall apart if whilst in company for an hour or two, you leave your smart phone in your bag. I may be old fashioned, but I call it common courtesy, when in company it would be a smart move to leave your phone alone and take time to enjoy communicating with those around you.

I have a name

Thank you 'anonymous' who left me a comment on Friday's blog regarding "Parkinson's does not define you". It was sadly a well-founded comment, and who ever you are, have clearly spent much time, like myself in hospital. The comment (for those of you who may not have seen it) was: "In hospital so many times Doctors on there rounds would say on arriving at my bed this is Parkinson's. Naturally this is not my name but as you say people are sometimes called by their illness and not their name. Not good."

Despite the marvellous care I receive, and I am fortunate to be under one of the best hospitals, which deservedly holds a fine reputation, I have to agree with anonymous' comment. The 'old school' of the doctor or surgeon making his rounds followed by his entourage is standard procedure in most hospitals. Standing at the foot of your bed, with all eyes upon you, not bothering to say good morning, or using your name, is insulting and lacks compassion, referring to you in the third party, talking about you as if you are merely 'a disease' and not a person at all. Then after discussing your case, the group leave, not waiting a second, should you want to ask a simple question, they hurry on to the next patient without pause or consideration for the patient. I am sorry to say that this practice still exists today, having personally experienced it a number of times, and although I have become accustomed to this archaic practice; fully realising that time is of the essence and 'the doctor's rounds' are not a social call, there is a need for change in attitude. I hope if you are a doctor reading this, you will please take note, as from a patient's viewpoint, this behaviour not only lacks empathy and is upsetting, but quite frankly makes you appear in a bad light. Please address a patient with courtesy, a smile, and most of all, don't call me "Gaucher with Parkinson's" …..I have a name, and it's Elaine Benton!  

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!