Excellent aid

I have great difficulty in getting in and out of a car, and need to park my behind on the seat  first and then swivel my legs around into the car. I think in my case, this is mostly due to the Gaucher disease rather than the Parkinson's. Nevertheless, it is a common problem for many. Sherryl from the Young@Park always finds interesting information and shares it with the Parkinson's community. I wrote an article for The Huffington Post recently about problems choosing a car with a boot large enough to hold a standard wheelchair, so wanted to tell you of Sherryl's recent report of an incredibly useful gadget to help getting in and out of a car. It always amazes me of how people come up with these new inventions. Whenever I see something like this, I always wonder "why didn't I think of that?" - I'm sure we all do the same thing! Sometimes something so simple and small can really make a difference. Take a look at the site about "Handybar Automobility Solution Kit.

I remember when I first started using crutches to walk around, I suddenly thought of a gadget to attach them to a table, as they always seemed to fall down or get in the way when we were out at a café. As we sat there, I even went as far as to draw a sketch of my idea on a paper napkin and my husband and I came up with a really good catchy name for it. As soon as we got home, we looked on the Internet to see if anything like this existed, and lo and behold, almost identical to the gadget I had drawn appeared before our eyes on the computer screen. Someone else had had the same idea, and beaten me to it. What a waste of a good paper napkin!

Hallucinations

Regrettably, I have experienced first hand stigma and ignorance regarding Parkinson's, and even found some patients who are unwilling to talk about certain symptoms of the disease and side effects of medications, for fear of alienation and shame. To put Parkinson's in a nut shell, (I dearly wish I could) and like a walnut just crush it to pieces, but sadly we know that's not going to happen! Parkinson's and many neurological diseases, to explain in simple layman's terms, is basically a malfunction where the brain is not making enough of a particular chemical that our body's delicate balance requires to function in a normal and healthy fashion. Just like millions of women who give birth, suddenly their hormones are thrown awry, all due to a temporary imbalance. Parkinson's unfortunately isn't temporary, but neither is it contagious, nor poses a threat to others; mostly the disease is grossly misunderstood. Education and information are my only tools to try and change the mindset of those who are ill informed.

The mere mention of hallucinations, sends most running in the opposite direction, taking any empathy or desire to remain in your company with them. Approximately 8% of Parkinson's patients experience hallucinations, but I doubt this figure is correct, as patients are generally not forthcoming about this particular topic to their families or doctors. The hallucinations may last only a matter of seconds, and can vary from the sensation of the presence of a person, a sideways passage (often of an animal) or auditory hallucinations. Experiencing these is admittedly a little unnerving, but it's important to realise what they are; visual tricks played by the brain that involves the body's senses. It is crucial to understand that hallucinations do not deem a person to be  "crazy" or "mad", but are merely a manifestation of the disease that affects visual perception.

Take medications on time

It's all very well having an alarm on my mobile phone, to remind me to take my Parkinson's medications, but often has been the case, I hear the alarm, turn it off, then promptly get distracted by something, and end up forgetting to take my pill. Missing PD medications or taking them late, causes immediate consequences, and it doesn't take very long before I start to feel the effects and realise I've forgotten to take a pill. I'm sure any fellow sufferer can empathize. Unlike Gaucher treatment, which is administered by infusion once every two weeks; it works in an entirely different way, and having the enzyme replacement therapy a day or two early or late does not affect the patient. But Parkinson's medications work in a very different way, and you can't afford to forget taking pills or taking too many. Timing with PD medications is everything, ensuring enough space between doses, and not eating immediately after taking Dopamine, especially protein. I carry spare Dopamine pills with me at all times, just in case I am delayed in getting home. Whenever we travel, I keep my medications in my hand luggage, just in case my suitcase decides to vacation somewhere else. I can always buy a new toothbrush, and a few new clothes; who wouldn't mind a little shopping therapy, but trying to get the correct Parkinson's medications in a foreign country would be pretty difficult. I never leave renewing prescriptions till the last minute, as running out of pills at home, although undoubtedly easier than abroad, causes unnecessary last minute panic, that we could all do without. So much of my life and this disease I have no control over, but I do my best to manage the areas I can control.

Registering pain

Well I just can't seem to stay away from the dentist. Whilst eating supper the other night, a piece of tooth sheared off, leaving a sharp edge and when I looked in the mirror, only half a tooth was still in tact. Making an appointment with the dentist, already suspecting that I would need a crown, I had no idea a dear friend had also done something similar and had an appointment a few hours earlier on the same day. The dental surgery know we are good friends, and receiving a cancellation from another patient, they kindly brought our two appointments together. To be honest, going to the dentist is no one's first choice of things to do, but knowing one is going to meet a good friend is certainly an incentive. We chatted away in the waiting room and then after we had both been seen to, we went to café. Unfortunately having had work done, we opted for only a drink, but it was definitely the best dental appointment ever that turned into a marvellous morning. What was interesting, was the fact that I had  no pain whilst the dentist worked on my tooth preparing it for a crown. I had purposely not taken any pain killers that morning so that he could diagnose clearly what was wrong. My leg was very painful whilst laying in the dentist chair, and somehow the pain of my tooth was not registering, as my body seemed to be concentrating on the pain in my leg. I don't know if anyone else has experienced this, but I would be interested to hear. The main types of pain usually associated with Parkinson's are: muscle cramps and dystonia, radicular pain, dyskinetic pain, restless legs syndrome, pain in mouth and jaw, headaches, akinetic crisis and pain.

A new lease on life

For several months leading up to moving, emotionally I was at an all time low, for we were living in the most difficult and uncomfortable circumstances. Although exhausted from the upheaval and recent move, this house has literally given me a new lease on life, and living in an environment that makes me and my family feel good, couldn't have come at a better time. Even the dog appears happier! Often one sees on television home improvement programmes, where a team of experts change the appearance of a home, and wow us with inventive ideas and colour schemes. I was very concerned to create an atmosphere that would ooze tranquillity and calm, using warm natural colours. It's amazing how simply colour can affect one's mood, and although there are still things to finish, a few boxes left to unpack; we are making headway and it is wonderful to be here.

It takes me so long to do just simple things, and I tire easily, so you'll have to forgive me for not writing more this morning.

It's the weekend!

We have been in our new home for 25 days, and so far I haven't fallen once, which has to be a good sign! However, I have "fallen" in love with this house. We feel very much at home, and all our careful planning seems to have paid off, making our house a safe, disabled friendly, low maintenance home.

My husband takes out our dog every morning for a walk and has met a few of our new neighbours. Whilst out walking the other morning, I thought they'd been gone an unusually long time, when they suddenly appeared on the doorstep with a neighbour and his dog in tow. I've always said that walking a dog is an ice breaker, a canine ambassador of sorts who introduces you effortlessly to other people walking their dogs. It was great to meet a new neighbour, and   within minutes discovering they have someone in their family with Parkinson's. There are millions of Parkinson's patients around the world; unfortunately you don’t have to look very far to find another family who has been affected or touched by this disease.

I can hardly believe it is Friday again - and wonder where the last week vanished to. However quickly the days pass, I am pleased to say that the cardboard boxes are also vanishing just as quick. I don't think I ever want to see a packing box or a roll of brown tape again in my life! I am taking great delight in throwing out the empty boxes along with the endless reams of bubble wrap and tissue paper.

My latest article appears on The Huffington Post  if you would like to take a look. I wish you all a very good weekend, and hope that those of you who are snowed in, stay warm and dry.

Port-a-Cath

The Gaucher medication is administered by infusion, so 15 years ago I had a Port-a-Cath surgically inserted under the skin in my chest; a one way valve for patients receiving frequent infusions. At the time, the optimum dosage of enzyme replacement therapy for Gaucher patients was given once a week, and to save the veins, a Port-a-Cath was recommended. To enable "home treatment" my husband was taught in the hospital how to insert the special needle into a 2 mm diameter circle of silicon, by merely feeling with his forefinger and thumb. This required not only guts to stick a needle into me, but great dexterity, for 2 mm is a pretty small area. A fair amount of pressure is required to puncture the skin and the silicon, until the needle touches the back of the titanium vessel. A 25 cm long tube is attached from this vessel, winding around the collar bone and down to one of the main arteries leading to the heart, which ensures the medication is pumped efficiently and quickly throughout the system. The Port-a-Cath was implanted under full anaesthetic, but 15 years later when it had come to the end of it's "shelf life", it was removed in the Day Clinic under local anaesthetic. My husband, who is not in the least bit squeamish wanted to watch the procedure, but the doctor refused and made him stand behind a curtain, whist the surgeon and nurse struggled to extricate this device which had embedded itself into my chest muscles over the years. After quite a struggle, the Port-a-Cath was dislodged and removed. My husband had stood for 40 minutes behind the curtain, watching the entire procedure in the reflection of a shiny cabinet that was positioned just right! My husband doesn't miss a thing! Today I have an infusion for Gaucher once every two weeks and a nurse is sent to our house to insert a regular i.v. needle into my arm.

Memory and repetition

Not all Parkinson's patients will experience cognitive difficulties, but as the disease progresses, a fairly large percentage have problems with memory and general mental ability. I was diagnosed with Parkinson's almost six years ago, and my memory is affected to some degree. I know that I often repeat myself, having forgotten I've already asked a question. This understandably becomes very tiresome and frustrating to say the least for my husband and daughter. Sometimes I must really try their patience, and who can blame them for getting annoyed? I would probably be equally irritated if I were in their shoes. However, understanding and  tolerance should be shown, for it's very hurtful and demeaning to be told flatly "you've asked that 3 times already!" Apart from making me feel bad, I think twice about speaking now, as I'm afraid of repeating myself. Patients can often retreat within themselves, feeling embarrassed, and end up not talking at all. This is a bad scenario, for having been a chatter box my entire life, I have become much less talkative. Although hearing someone repeat themselves again and again must be enough to drive anyone up the wall; just stop and think a moment of how the person who has Parkinson's must be feeling. I'm always nervous of forgetting someone's name, not knowing if I'm repeating myself; makes me very hesitant and self conscious. To be totally honest; not remembering if I've said something or asked a question already and forgotten the answer, makes me feel like an idiot. I can assure you, I don't repeat myself for the fun of it, or get some deranged amusement from driving everyone crazy. Please show empathy and as much patience as you can muster when in the company of someone with Parkinson's.  

The best support

Very good friends came over last night, armed with dinner, we had a delicious meal together and with their cheery wonderful personalities the evening was extremely enjoyable. My sides were aching from laughing so hard. There's no better medicine than this!  I thought I would make a desert for our American friends that I knew they had never had before. The British climate calls for hot comforting puddings that are often quite heavy, but due to their origins, where ingredients were simple and counting calories wasn't a consideration in those days, we now only indulge in these deserts on a rare occasion. As I placed the steaming desert on the table and told our friends it was called "Spotted Dick", I knew this would be met with wails of laughter. I had to assure them it was quite safe to eat, and was not some kind of venereal disease! Curiosity got the better of them, and they were soon tucking into a true classic British desert, in-between much amusement and many puns. The desert disappeared; not one piece was left, and it made for a  hilarious end to a meal. 

Having family or good friends who know how to give positive practical help is valued, and appreciated more than I can put into words. Again I say thank you to all who have helped us with moving house. Thank you for all the ready cooked meals, help with the laundry, unpacking the kitchen, moving plants and babysitting them until our garden is ready to be planted. Practical support in circumstances such as these is invaluable. THANK YOU for being here for us in a time of need. 

Pain is draining

I am extremely tired and everything takes a great deal of effort these days. Even concentrating or focusing on a simple task, takes perseverance and energy. Waking in the morning, I am immediately made aware of the pain that racks my body, and the rigidity making it very hard to move, let alone get out of bed. Gaucher and Parkinson's; a worse combination would probably be hard to find. Pain from both diseases is extremely tiring and wearing. I don't know how much longer I can keep up writing and all the other activities that sprang forth when my book "Parkinson's, shaken, not stirred" was published in 2011. It has been an eventful ride and I have made contact with some amazing people - all like minded, with one common dream in mind; a cure for Parkinson's. 
Having been totally pre-occupied with moving house, I haven't had my hair cut for some months now. With no mirrors yet in our house, it wasn't until my husband hung a full length mirror in the bedroom yesterday; that I got a shock seeing what I look like. My thick hair had grown into a bush, resembling someone who had been pulled through a hedge backwards. I immediately phoned our hairdresser, and thankfully he managed to fit me in. Having my hair washed at the hairdresser is so much more comfortable than me struggling at home. To hold my arms up and effectively wash my hair and rinse out thoroughly the shampoo and conditioner is hard to do, and much easier with someone's assistance. I have little strength in my arms and hands and even my fingers are swollen and painful. Any way enough of me griping, it's not in my nature; I have much to be grateful for and refuse to let ill health get the better of me, and will continue to maintain a positive attitude.

Rigidity

Waking in the morning, for many Parkinson's patients is an agonising experience, for during the night, the body becomes stiff and rigid, therefore moving in bed or attempting to get up can be very difficult. I almost feel like the tin man in The Wizard of Oz, creaking and needing oiled joints to loosen the rigidity. If only it were that easy! It's hard to find a comfortable position in bed, and should I want to change positions, it's painful moving. Once up and out of bed, after a while I loosen up a little, but my balance is poor, and have fallen several times recently. Thankfully each time I've been lucky and had a soft landing. Moving house recently has really taken it out of me, and my energy levels are at an all time low. Some days I feel as if I am running on an empty tank and in slow motion. I used to be so organised and quick, a master of multi tasking. Now things are very different, and I'm lucky if I manage to complete something at all, before getting distracted or losing focus on what I am doing. But all this comes with the territory - Parkinson's  has many symptoms and stages, and each patient is a different story, so I was surprised to read that there are five stages of Parkinson's:

Symptoms in one side of the body, poor posture, shaking and tremors.

Affecting both sides of the body, daily tasks difficult to perform.

Balance and impairment - mild to moderate slow movement.

Severe disability - balance and movement.

Wheelchair bound - not able to take care of oneself.

I don't know how accurate this is, and upon what data it is based, since every patient's symptoms vary slightly, and no two patients experience the same things. How these five stages were determined, I'm not entirely sure.

My latest article appears in The Huffington Post if you'd like to take a look.

Wrong impression

We live in a rural area and have the pleasure of being surrounded by fields, orchards and a forest. I wanted to check there were no future plans for development or perish the thought, high rise apartment buildings going up behind us. I visited the local building planning office, asking a lady at the front desk, I was told I'd have to submit my request in writing and wait to be invited to a committee that sits once every two weeks to discuss such matters. Having hoped for immediate information, my face dropped, and looking despondent, leaned on her desk and said "my husband wont be pleased if I go home without an answer!" 

What I had forgotten, was that both my arms were badly bruised (one bruises easily with Gaucher disease) and I literally looked as if I had been beaten up. The lady looked me up and down, told me to wait a moment  whilst she hurried into the back office where I could see her talking to another woman sitting at a desk. The two of them simultaneously looked over in my direction, and then continued in  their hushed tones. The lady returned to the counter and told me that they didn't usually give out information informally, but she was concerned for me and would make an exception. 

As she spoke, I noticed her glancing at my arms and it suddenly occurred to me, she had assumed I had taken a beating. Little did she know that Gaucher disease was solely responsible for my colourful bruises, and most definitely not my gentle, loving darling husband. I didn't say anything. Leaving the office armed with the information, and thinking for once, having Gaucher had unwittingly given me an advantage, although now my husband had a questionable reputation! Arriving home I told my husband what had happened, to which he was mortified, and told me out right that he wasn't going to set foot in that office if they were under the impression that I was a beaten wife. I can't say I blame him! However, we are now safe with the knowledge that the fields behind us will stay agricultural land.

Have a good weekend.

Planning ahead

In answer to some of your questions regarding making a home as comfortable as possible for a disabled person, with low maintenance and safety high on the agenda; here are some of the small, yet essential things we picked up on our learning curve of designing a home based on my needs. These ideas are applicable not only for disability but also practical tips planning ahead for old age.

The biggest and most obvious feature being that all doors and corridors are large enough to allow a wheelchair or Zimmer frame to comfortably pass.

Make sure your bathroom mirror is measured and positioned at the correct height, by sitting in a wheelchair in front of the place you intend hanging the mirror. In our bathroom, the mirror has to be hung relatively low to ensure that I can see my face whilst in a wheelchair, yet it has to be high enough for my husband to see himself when standing up. Hence our bathroom mirror has to be quite large to take into consideration both heights.

The kitchen tap has been placed a little further forward than in a regular kitchen, so that I need not bend over or have to stretch to use the tap, and as I mentioned the other day, instead of having the fashionable spindle like lever, we opted for last year's fashion where the lever is far more robust and easy for those with little dexterity.

The toilet roll holder and the safety hand rails are clearly best positioned if you sit on the toilet when marking the place that is the most comfortable and effective for you.

Instead of fiddly hooks for towels, in the bathroom we have large rings that make it easier with impaired dexterity in one's fingers.

The counter top in the kitchen has a small ridge of 1/2 cm around it to stop things rolling off onto the floor.

The runners of the patio doors are sunk into the floor that open leading out into the garden, making a flat as possible surface for easy wheelchair access.

Light switches have naturally been lowered, but also extra switches added so that a corridor can be lit from either end, and likewise the light turned off, no matter which end one is standing.

These are just some of the features that make a huge difference, however small they may appear. There are many more, but if there is anything in particular that you would like to ask about - please feel free to write to me and I would be happy to answer you. 

Live in hope

Parkinson's by very nature, makes its unwelcome presence felt constantly and doesn't let up; with great momentum continuing to antagonise the sufferer 24/7. It affects every aspect of one's life including that of close family and friends who are brave enough to stick by you through thick and thin. With heightened awareness, the vast amount of research and development going on around the world, looks very promising, with new procedures producing positive results, a cure or treatment has to be very close. So many pharmaceutical companies are tirelessly working to be the first to come up with a wonder drug, as if in some sort of race. It is indeed  a race, for many of us are running out of time. I had a sudden thought, or maybe a wishful daydream, wondering what it would feel like to actually be cured. No more shaking, tremors, falling down, and all the other horrid symptoms and side effects from the many medications patients depend on to make it through each day. I closed my eyes to imagine what it would be like to live a normal life again. How dearly I would love to be re-introduced to the world from which I have now been excluded. The thought of walking briskly with my dog through the forest, or running with her on the beach, strolling hand in hand with my husband along the sea front, or even something as simple as getting out of bed unassisted and without all the groans that make me sound and look like I'm a 100 years old. Some dream of fame or fortune, others of winning the lottery - but I dream of the day a cure is discovered and made available to all those in need. I live in hope.

Quality of life

Since moving, the quality of my life, not to mention that of my family, has improved vastly. The nurse arrived at our new home, to administer my Gaucher medication, and it is such a pleasure sitting in the lounge, looking out, the sunshine streaming in through the windows filling the entire room with light and warmth. As I sit here writing this morning, attached to the i.v. having my home treatment, I realise the enormous improvement a well thought out disabled friendly house can have on the quality of life for someone like myself. Should I need to visit the bathroom during the hour and a half infusion,  which inevitably happens - it's Murphy's Law; this house has wide corridors and doorways, enabling me to wheel my i.v. stand and enter the bathroom without a problem. Living in a safe and comfortable environment really makes a huge difference. I knew life would be easier for me, but until actually moving in, I had no idea to what degree. The design and thought spent on this house, has affected me in a huge positive way. Some of the features may sound small to those who are healthy, but some of the little things, such as the design of the kitchen, is a huge transformation for me. For example, there is a kitchen island, giving me something solid to hold onto should my balance be off. The kitchen tap has a robust lever which is easy to grab hold of for anyone with Parkinson's. The man in the shop tried selling us a more stylish slim tap with a spindly lever, but once I explained the lack of dexterity in my fingers, he understood, and brought out last year's designs from the back of the storeroom, which were far more suitable to my needs. So I have last year's tap design - it doesn't bother me! Instead of cupboards, I have pull out drawers containing all the necessary things I would use on a daily basis, which are far easier than regular cupboards with fixed shelves. I am extremely happy with the way the house has turned out. It is undoubtedly well worth investigating, and finding out as much information as possible, from professionals in this field and also gleaning advice from disabled people who may have valuable personal experience. 

Soft landing

Falling is a common symptom of Parkinson's, and can cause complications one frankly can do without. I fell again recently, on the day we moved house, but luckily fell into our dog's bed providing a soft landing. We have a huge dog, and therefore her bed is extremely large, but I did however bang my head hard on the ridge of her bed. Laying there with my legs ungainly hanging over the end of her bed, must have been quite a comic picture, and our dog curiously nuzzled me, baffled as to why I had decided to take a sudden rest in her bed! Although thankful to land on something soft, the thought of laying there in our dog's smelly, hair covered blankets made me want to jump into the shower immediately! The removal van had just arrived, so my shower had to wait until the evening once we were in the new house. One of the workers from the removal firm saw me fall, and thoughtfully gave me a drink, and although I appreciated his concern, it made me wonder why people always offer a glass of water or a cup of sweet tea when something unexpected happens. I think the gesture actually makes the onlooker feel better and gives them something constructive to do, rather than actually helping the person in distress. Although the workers were unaware of my medical condition, once they saw my crutches, wheelchair and i.v. stand, I think it was pretty clear that I'm not in the best of health.  I don't know of anyone who likes moving house, and I have moved more times than I care to remember, so I have no intention of moving again. Home is where you hang your hat, and my hat is out of its box and hanging on the wall. I'm not going anywhere - I'm finally home!

Intolerance to noise

Moving house is a tense time for anyone, but for someone with Parkinson's, it can be a nightmare. Recently having workmen finishing various things in our house, making a mess, sometimes leaving a thin film of white dust like a ghostly shroud covering everything in sight, the noise of many labourers coming and going, shouting commands to each other; all this commotion really grates on my nerves. After several days of an unsettling disturbing atmosphere, I began to feel quite unwell. Thankfully there is very little left to be done now, and just the garden is left to be planted. I've found that Parkinson's has made my hearing very acute, creating an intolerance to loud noise. If music is too loud it becomes almost unpleasant, even if its something I enjoy listening to. Loud bangs, or heavy machinery, people yelling, and even scraping of chairs in a restaurant, all aggravate and cause tension. It’s almost as if I have super hearing powers with an audible range like Superman. I don't know if others with Parkinson's disease experience this peculiar phenomena; I'd be interested to hear. Although I've lost my sense of smell, and my eyesight is appalling, my hearing has somehow become heightened, and yet the volume of my voice occasionally becomes very hard to hear. Go figure! who can explain the many strange and varied symptoms bestowed upon the unlucky individual with Parkinson's disease?

An amazing man

Today's blog, is dedicated to my amazing husband. Like a heaven sent angel who has no wings, my dearest has the patience of a saint. He must have very broad shoulders to succeed in working full time, taking care of me, and just completing building a disabled friendly home especially with my needs in mind. He takes everything with a pinch of salt, and remains calm when others would possibly be tearing their hair out. How he manages to achieve all he does is beyond me. When we fell in love and married, he knew I had Gaucher disease, but neither of us could have imagined what the future held in store, and by some cruel twist of fate, I would be diagnosed at age 44 with Parkinson's. Many spouses would run as fast as they could from  such a situation; but not my man. He steadfastly stands by my side, sometimes understandably with a pained expression as I repeat myself for the umpteenth time, or take forever to do something simple as making a cup of tea, breaking yet another glass or dish, and am now far from the capable young vibrant woman he married. Yet he never complains, and stays cheerful and ever hopeful, supporting me in every way possible, encouraging me to write and continue campaigning for Gaucher and Parkinson's. I told him he never need buy me another present, for he has given me all I could possibly want and need. I have the best husband in the world who I cherish, a loving daughter, and now a beautiful purpose built home which I would never have dreamt of having in a million years. I have so much to be grateful for, and despite suffering two diseases, I am truly blessed. Thank you my darling husband for all the wonderful times we've had and the great memories we've yet to make together. You are one of a kind, and I marvel at how after all these years you still manage to surprise and amaze me; you continue to take my breath away. May we have many years filled with happiness ahead of us. I only wish I could give you even half of what you have given me, and take care of you, the way you look after me. You deserve so much more. I have always loved you with all my heart and always will.

Happy Anniversary

I fell in love with you a long time ago,

What future held in store, we did not know,

My heart beats faster, with every breath I take,

Together side by side, with each step we take,

My chest could burst, so full, may overflow,

Emotions run fast, no way to make them slow.

Only one man, holds the keys to my heart,

You held my heart strings, right from the start.

Those strings are strong, and never shall break,

Everlasting are they, make no mistake.

There's a place in my heart, only you can fill,

I’ve forever loved you, and eternally will,

Written by Elaine Benton - 2013©

Home sweet home

What a pleasure it is to finally be in our house - I feel so at home and comfortable that I could happily never venture outdoors again!  But don't worry, I'm not going to become like the great Hemingway and turn into a recluse! Although I wish I had his incredible talent for writing; becoming one of America's classics, still highly regarded today. I might be tempted to stay home a while enjoying the house we have planned, talked about and dreamed of for so long, but I'm sure to venture out once things get straight. Trying to think of every eventuality, building a disabled friendly house, and with old age in mind, we sought advice from wheelchair bound people, who have built their own houses, to social workers, doctors, physiotherapists, sales people in shops selling bathroom fittings specifically for the handicapped, and of course there is a fortune of information on the Internet. Our builder very soon understood my requirements, and together with his in-house architect we worked closely together creating a suitable living environment. All doorways are 90 cm and corridors are one meter wide to allow wheelchair access. My side of the bed is closest to the entrance of the bedroom and right next to the en-suite bathroom, with plenty of room to manoeuvre. All light switches in the house have been lowered, and hand rails installed next to the toilet and shower. The non-slip flooring in the bathroom is amazing. I thought it would feel rather rough (like sandpaper) underfoot, but it is quite comfortable to walk upon and certainly much safer than regular floor tiles. I've also been told that it is fairly easy to keep clean. The kitchen has easy pulling out drawers that accommodate most of the things I use on a daily basis, and the cupboards that are higher up and out of my reach, are for wine glasses and all those things that I would prefer not to touch and risk breaking! Storage is always an important issue for anyone, and thankfully we appear to have plenty. The garden has yet to be done, and at the moment is a muddy bare area, but it will have raised flower beds so that I can reach with ease, which will be filled with hardy plants requiring little maintenance. I can't tell you how this move has lifted our spirits and boosted our morale. It has literally given me a new lease on life. One's emotional state is very much connected to Parkinson's - any anxiety or stress greatly exacerbate the disease at a scary and alarming speed, and equally any good news or changes for the better have a great positive effect almost pushing this rotten disease to the side lines for a while. I think 2013 is going to be a very good year!

Spirits lifted

We lived for some years in a very small apartment, totally unsuitable for a disabled person. The doorways and corridors not wide enough to allow a wheelchair through; a dangerous slippery bathroom tiled floor, steep steps leading out into a tiny garden, were some of the problems to mention a few. A more unsuitable apartment would be hard to find! Although cosy and charming; having made many happy memories there, it was time to move on, to somewhere that suited my needs. Now in our house that has been made especially with my disability in mind, life should be more comfortable and already feeling at home in our new surroundings, my spirits feel lifted. Waking up the first morning, seeing the sun streaming in through the windows, and looking around, was a fantastic feeling. Taking a shower was a pleasure; the non-slip floor tiles gave me a feeling of security and safety. Having our first breakfast here, trying to find where everything was in the kitchen took a while, but eventually we managed to make some coffee and locate the cereal. It will take me some time to recover from this move, and running on adrenaline and pushing myself to the limit, has now left me depleted of energy and worn out. My husband has born the brunt of all the anxieties and organizing things, running here and there, and somehow holding it together throughout the last few months, which I am eternally grateful for. It has been a very difficult period for him, working full time, and building our house whilst taking care of me, ensuring I was relieved from any stress or worries. As anyone with Parkinson's knows, anxiety exacerbates the disease at an accelerated speed. However, we are thrilled to be here and have no intention of ever moving again! I would love to tell you of all the disabled friendly features that we've incorporated into the house, but you will have to wait for another day. I'm afraid it is taking a great deal of effort to type this morning. So I will bid you all a lovely day wherever you may be in the world, till we meet again tomorrow.

Moving house

After almost 7 years of planning; designing, dreaming, much frustration and waiting, we finally moved into our disabled friendly house which has been built especially with my needs in mind. Packing up an entire household is a mammoth job, and I was ruthless when it came to getting rid of unnecessary clutter that we are all guilty of accumulating over the years. I started packing way in advance, as I could only manage a little each day and found it an exhausting and time consuming job. If a piece of clothing no longer fits, and you haven't worn it in a few years - get rid of it. The same applies to household items that are either broken, not used; simply taking up space and gathering dust. Obviously certain sentimental objects one wants to keep, that remind us of good times or loved ones who are no longer with us. The day arrived to move, and a feeling of excitement along with the surreal feeling that this was all a dream, after waiting so long, made for some very mixed emotions. The removal company efficiently and quickly performed their job, and within a few hours we were surrounded once again by boxes, but now in our new house. I would like to thank all our family and friends who have helped us in various ways; from bringing us prepared food so we wouldn't have to cook for the first days, doing laundry as our washing basket started to overflow, and helping to unpack the kitchen ware. I am very grateful for this wonderful and most practical help at a very stressful and physically challenging time - thank you!  Going to sleep the first night in our new home was very exciting, but as thrilling as it was, exhaustion finally took over, and I think we all fell asleep as our heads touched the pillows. Life will be so much easier for me now, living in a house especially designed with Gaucher and Parkinson's in mind. We have tried our best to take every aspect into account, but no doubt there will be something that we forgot or overlooked.  . 

I sail in my dreams

Have you ever looked in the mirror and wondered who on earth is staring back at you? Parkinson's is slowly stealing away my smile and expression. Now if I were a Poker player, this would give me a distinct advantage, but other than that, it makes if very difficult for others to know what I am thinking. I barely recognise myself any more. The reflection staring back at me has no expression, just a blank empty look. Recently I went sailing with my husband, and whilst he steered the helm, hoisted the sails, tacked back and forth; I sat like a lady of leisure, unable to be of help at all - although I did make the sandwiches! At one point my husband looked at my 'masked face' and unable to read what I was thinking, asked if I was feeling sea sick. Fortunately I was not, as there was little wind and the sea was as calm and still as a millpond. "No I feel great" I answered, thinking back to the days of my youth when I dreamt about circumnavigating the world - a sailing expedition that would be an experience of a lifetime. This never came to fruition, so I sail in my dreams and live through the excitement of others who have achieved their goals. I am in contact with the author, Lois Joy Hofmann, who circumnavigated the world with her husband - intrepid adventurers visiting many countries and experiencing life at sea, a far cry from the corporate world they left behind. Lois has just had her latest book released 'Sailing the South Pacific' - a wonderful read for anyone who has a passion for adventure and sailing, experiencing life to the full.

Falling

Due to lack of balance, Parkinson's patients are prone to fall, and this can lead to a myriad of problems. Having fallen several times, I have been lucky so far not to have done any serious damage, but my most recent fall was a different story. Making sure that one's home is disabled friendly includes having a clear path to walk throughout the house, and unfortunately due to our recent move, packing boxes everywhere, resembling a warehouse, it became a slalom course getting from one room to another. Falling one day, I landed on my face and hit my jaw bone on a hard surface. I had terrible pains in my lower jaw, and convinced it was just bruised, I didn't go to the doctor, which on hindsight - was probably not a wise move. If you do fall, don't wait; go to your doctor. This is a classic case of "do as I say and not as I do." After several days the pain persisted, not only in my jaw bone but spreading to my teeth, radiating up towards my ear. This did not look like a good sign! I felt like my teeth were erupting and so immediately made a visit to our wonderful friendly dentist, who I trust implicitly. After x-rays and a thorough check-up, thankfully he found no fractures or visible damage to my jaw bone or teeth, but the trauma that my jaw and teeth sustained from the fall, is definitely going to take some time to heal. To refrain from falling is extremely important, and any loose rugs or carpets, small items left on the floor that should not be there, or large packing boxes that are simply in the way, is an accident waiting to happen. If your balance is poor and you are unsteady on your feet, use a crutch or walker to ensure you don't fall. No one likes to be seen with a walking aid, but put vanity aside and make safety your first priority. Falling is no joke, so make your surroundings appropriate and avoid serious injury. 

Fashion tips

My sister-in-law has an elegance about her and no matter what she is wearing she always looks chic. Clearly this runs in her family as her mother and sister also possess this attribute, which annoyingly, I seem to lack. Either you are born with this innate sophistication or you're not. Unfortunately I was not endowed with grace or style and it has taken me some years to learn these things which do not come naturally to me. Admiring my sister-in-law's new short comfortable boots easy to pull on, no zips or laces; a flat pliable rubber sole that looked non-slip, stylish yet simple - I couldn't help but ask where she had bought them. Finding footwear that is comfortable, easy to put on and take off, that one can safely walk in and are attractive is a tall order. This year however, there seem to be a large range of ladies boots in the shops, so if you need a pair of boots, now is the time to buy. A friend of mine who runs "Wardrobe", having been in the fashion business for many years, offering women advice on dressing for any occasion, gave me a few more tips. One was to invest in a pair of classic earrings, (if you don't already own a pair) that you can wear all the time and sleep in, thereby eliminating the need to remove fiddly earrings when going to bed. She told me that to achieve a good look - the earrings should be in proportion to your face, a thought which had never crossed my mind. Another item that may be overlooked is if you wear glasses; again it's worth investing in good frames that suit your face, after all, glasses frame your eyes, which is the first thing people see. I made a short poetry reading on YouTube during 2011, and was shocked when I happened to see it the other day. My hair was so long (this was before my "make-over") and I still had facial expressions. My face now often frozen, makes me feel very self conscious. During a clinical trial several years ago, I was video taped walking, and my picture was taken so there would be a pictorial record of my facial expression. If they were to take my picture today, they would no doubt clearly see the difference - a sort of before and after picture, except usually the before pictures are awful and the after pictures are the ones that make us go WOW! Parkinson's seems to turn everything upside down and back to front!

Childhood days

I dedicate this poem to someone special who has a birthday today.

Memories of childhood days I find,

When summer colours float through my mind.

Of days I spent when young by the sea,

Playing on the beach barefoot and free.

Picking strawberries, and blackberries too,

Telling endless stories for your sister and you.

We shared many times, I cannot forget,

Memories raced back, when last we met.

The wind in my hair, and salt on my face,

Sand in my shoes and all over the place.

Sailing, a huge part of my life it became,

Once you've sailed, things are never the same.

Black Wellington boots, and duffle bags,

Wet creosote and oily rags.

Rounds of sandwiches and flasks of tea,

Of my childhood, these remind me.

Millbeach, was a part of my past,

And forever the smell of sea shall last.

For these memories of childhood days I find,

When summer colours float through my mind.

Written by Elaine Benton  ©2013

Another day with Parkinson's

Life is hard - even if you don't suffer from ill health, in today's world, it's not easy to make ends meet, and to uphold a certain standard of living. With the economy worldwide in poor shape, a disabled person, often on a small disability pension; times can be very hard. There are so many extra expenses when chronically ill, and if one were to chart all these additions, it would be quite shocking, as they add up to a tidy sum. The financial side is generally overlooked, and no one, unless in your shoes, knows how difficult life can be. To give you a few simple examples:

Purchasing prescription medications.

Purchasing additional medications that require no prescription which are considered "alternative" or "holistic" medicines and are usually highly expensive.

Any special equipment, walking sticks, crutches, wheel chair, hand rails for bathroom, raised toilet seat, electric bed, heating pads, good shoes or house slippers with proper support.

Loss of spouse's income when spending the day in hospital, not counting all the doctor's appointments, time spent going to the pharmacy, plus car parking charges in medical centres and hospital car parks.

Often little or no time to take food and drink with to hospital, one ends up spending money in the hospital cafeteria.

Much time is spent contacting various authorities when chronically ill and in need of assistance. The amount of running around, bureaucratic forms that have to be filled out by not just your doctor, but an array of health officials,  takes precious time, and again, if the person who is ill cannot get to these offices, then the spouse who brings in the sole income for the family, has to once again take time off work.

Although the saying "money can't buy you health" is true, but having money makes life much easier and  just a little less fraught when chronically ill by alleviating the financial burden.

Take a look at my latest article entitled "The Happy Gene" on The Huffington Post"

New Year's resolutions

Happy New Year to you all. If you partied last night and are a little worse off for wear this morning, then go and make a pot of coffee and we'll have breakfast together. You may live half way across the world or simply around the corner, but through the Internet, we are brought together. I am sitting here in my kitchen, the rest of the household still asleep, and yet I am with you, as I sip my coffee, and talk to you on this chilly but bright day. Waking up this morning, realising another year has gone by, we reflect over precious times; wondering what the future holds in store, and what the coming year will bring. Making new year's resolutions is easy, but keeping them; that's the hard part! My new year's resolution will be the same as it's always been; to enjoy life to full, not waste a moment and spend as much time as possible with those I love. I thought I would start the new year off with a poem. I wrote this in 2011, but it was written about an event that nearly cost me my life. The human spirit is extremely resilient, and clearly I have much left to do in this life, otherwise I don't think I would still be here. I have not published this poem before, so you are the first to see it:

A Wish

By Elaine Benton © 2011

Adorning endless skies of blue,

Feathery clouds gently float,

Lightly moving with soft winds,

I heavenly sail a cosmic boat.

Darkness falls, tiny lights appear,

Brilliant stars illuminate the night,

Grant my wish, star vivid up high,

With all my heart, my eyes close tight,

I once journeyed to the other side,

But twas not my time to leave,

Back to life, earthbound once more,

I've more time than you believe.