Rare Disease Day

Show your support by simply watching and sharing the official video of Rare Disease Day to help bring about change. This is the 6th year of what has now become an annual event to raise public awareness, and although the idea of  Rare Disease Day 2013  is to inform and educate the general community, it's aims are also to bring these diseases to the forefront making politicians, researchers and professionals in the health field pay more attention.

Having a rare disease is very isolating for the patient and family. Often there are no support groups, and no cure or even treatment available. I guess the cruel reality is, that it is not cost effective to the pharmaceutical companies to spend millions on new medications for a rare disease that has a relatively small number of sufferers. I know only too well, for I was born with Gaucher disease, a genetic rare disorder that until 21 years ago, there was no treatment available at all. Thanks to a very special Professor, who made Gaucher disease his life's work, the first Gaucher clinic was opened, and a Gaucher Association was created to offer support and help to fellow sufferers and their families. My husband and I were part of this initial committee that helped found what today is a successful group. Our numbers were small to start with, but as word began to spread, other sufferers started to emerge out of the woodwork and today there are hundreds of patients and their families who have gained from the keen dedication of a marvellous Professor and the drive and determination of an amazing Chairlady who created the Association. Together in numbers we are strong and have a voice.

Appreciate what you have

I look about me, and despite being in pain most of the time, suffering the indignities that Parkinson's has so generously thrown my way, I feel content. When I say "generously"  needless to say I mean this with great sarcasm. My dry British sense of humour still intact has become an important tool for dealing with every day difficulties. As strange as this may sound, on a good day, I am able to put aside my illnesses and see the good things that have been bestowed upon me. With a loving attentive husband by my side, who deserves a medal for putting up with my health issues which disrupt our lives, and a daughter any mother would be proud of; what more could I ask for? Focusing on what's important, it's not hard to realise, I have everything I could ever want or need. That is everything except good health. But who knows maybe the day will come when Parkinson's can be extinguished from our lives, and the fiery intensity with which it devours the body and mind will be doused and put out for good. So, feeling like it's going to be a good day, I have decided just for today I will see no PD, hear no PD or speak of PD. 

Losing weight

Difficulty in swallowing is a very unpleasant feeling and a symptom of Parkinson's that requires one to keep calm. I was advised when eating to take small bites and not to overload my fork. Choking on food or even one's saliva is a scary situation, and as soon as you let panic take over, naturally the whole episode becomes even worse. Eating foods that go down easily such as yoghurt, makes things easier. Having no sense of smell, and now my taste buds are also diminishing, hence food is less appetizing to me, and it's easy to skip meals. The less interested in food, due to no smell or taste not to mention the scary sensation of choking, all naturally promote weight loss. Losing weight at first might seem great, getting rid of excess kilos that with little work slip away effortlessly. You may initially feel good and fit into your clothes much better, but this is a dangerous line to cross. The stomach also becomes accustomed to receiving less food, and the loss of weight can escalate and get out of control, which can possibly lead to other complications. Pay attention that you eat and don't miss meals. Try and eat a well balanced meal, and keep an eye on your weight. 

Mourning process

Continuing from yesterday, these are some of the thoughts I wanted to share with you from the personal experience of a caregiver:

"As unpleasant a thought, it is natural and inevitable  that one of a couple will go first. After losing a spouse/partner, how does one move forward? Everyone needs a reason to get out of bed in the morning. If hobbies and a social network are already in place, this makes the transition from being a couple to ending up single much easier. Plan and prepare for the day that will unavoidably come - especially those caring 24/7 for someone without any help, due to finances, guilt or shame.

The mourning process begins whilst still caring for a loved one, and should be acknowledged that whilst grieving the loss of the person, they should be remembered as they once were. We all go through this whether we have an illness or not, simply due to the ageing process that none of us can avoid. As the years pass, we become more fragile, no one escapes this progression. We protect ourselves, but we shouldn't give up and become insular; we need to fight it. 

A caregiver doesn't realise it at the time, but is already going through a mourning process even though their loved one is still very much alive and present. Both go through this course which is only normal. However, find new joys and interests that both can share while still able; creating a new history together. This might not be the route you had planned, but a different one can be made, by organizing a variation of what you had once planned. Find a new place of contentment in whatever inspires you - giving you reason to preserve your spirits. Keep in touch with what you enjoy and don't give it up."

A caregiver's experience

I have a special visitor staying with me at present; my sister-in-law, who has first hand experience at being a caregiver, as she looked after my brother who had Gaucher and Parkinson's, until he sadly passed away three years ago. Talking together, I was given insight of her experience and what she had been through. I was taken aback at something she said, that had not occurred to me, and with her permission I am sharing her perspective with you:

"It’s all about attitude, as everything is in life. Make sure you reach out for help. Banish feelings of shame, guilt and anger, and get out there. Continue to be part of society. How a caregiver reacts is incredibly important, not only for the one who is ill, but for family and friends too, as unconsciously a caregiver can become a role model for those around. It is important to set a good example for our children; the next generation. Everybody gets ill at some point in their life, obviously to different extents, and people will remember down the road a positive or negative approach of how a caregiver handled a particular situation. Family and friends want to help a happy person, but will become estranged from angry people. Anger and bitterness gets treated like a contagion, and puts distance between you and the very people you need, and who like wise need you." 

There is much more I would like to write, as we talked for several hours, and many pertinent issues arose. I will write further on this topic tomorrow. Until then, I wish you a good day.

Have a good day!

Have you ever noticed how some days just start off on the wrong foot, and go from bad to worse? You begin to wonder why you bothered getting up at all? Then there are other days, where you sail along and lady luck seems to be by your side. Yesterday was a good day, which is a rare occurrence for me, suffering two chronic diseases. It started off with a refund that arrived in the post from the gas company, a most unusual but welcome surprise - what better way to start a day! Usually the mail consists of bills to be paid, bank statements that make one cringe, and enough junk mail to have killed a dozen trees. Life is what you make it, and if you decide to have a bad time, trust me you will. If you awake in the morning with the preconceived idea that today is going to be hell - you wont be disappointed, for it's sure to be miserable. So when I wake up, I make a conscious decision that today is going to be good. Of course this doesn't always work, as having two chronic illnesses to contend with, sometimes no matter how determined I am, I cannot control what is happening to my body. However, staying as positive as I can, seeing the cup half full and counting my blessings does help.  A series of small good events can create a chain reaction, and ultimately make for a positive and pleasant day, putting Parkinson's on the back boiler for a while. When you have a good day, it's almost contagious as automatically you affect those around you. If you smile at someone, they will inevitably smile back at you. If you greet a person warmly, it is usually reciprocated; this is human nature. Keeping cheerful and having a sense of humour, is beneficial for you, but even more so for those you love and who tirelessly stand by your side and take care of you. Have a good weekend; be infectious and make everyone around you smile and laugh, and if you have a minute or two before you leave your computer, take a look at my latest article on TheHuffington Post. 

Keeping a schedule

I am a creature of habit and like to adhere to some sort of routine, which is pretty difficult when no longer able to go out to work. A large percentage of the population having nine to five jobs, running children to school, or various extra curricular activities, participating in weekly social events keeps one on a regimented timetable and like clockwork you know what day of the week it is! Being housebound most of the time, the days can run into each other, therefore I find it's important to create some sort of schedule, giving me a framework that organises my time. There is so much in our lives we have no control over, that trying to maintain a schedule of sorts makes me feel I have a little influence in what goes on in my life however trivial it may sound. I try to do as much as I can, often overdoing things, but this is my nature. Keeping occupied when chronically ill is vitally important, and although completing a small task, may leave me exhausted, the feeling I've accomplished something more than makes up for this. Parkinson's may be keeping me hostage, but writing sets me free, hence much of my day is relegated to writing. Someone kindly gave us some lemons from their tree, so given lemons, instead of making lemonade, today I am going to attempt making a lemon meringue pie, for a special visitor. This is one of my family's old favourites, and a desert which I've not made in very long time. Wish me luck, and let's hope that I don't drop it on the floor, as I have a feeling my dog who will eat almost anything and flabbergasts us at her gastronomic tastes, might not be over enthusiastic at clearing up a sharp lemon desert!

Masking

"Parkinson's Masking" is the term used when a person has an expressionless face, hardly blinking, turning one's entire head to look instead of moving just the eyes. Not everyone with Parkinson's will encounter masking. Make sure that your spouse/partner, family and friends are aware of this symptom. Usually I can feel when my face starts to "freeze", but on occasion I need someone to tell me. All small expressions, raising an eyebrow, a slight grin or wink no longer show on my face, but if someone makes me laugh really hard, then you'll see my smile and laugh. Most of the time my face is expressionless, and this is very confusing and disconcerting to those who don't understand. There are exercises one can do, by contorting one's face into exaggerated stretching movements, which as you can well imagine make one look extremely funny, so probably best done when alone, unless you want to entertain the family! I didn't  realise how much I rely on facial expression when conversing or simply listening to someone. It's terribly embarrassing to listen to a sad or serious subject being discussed and instead of having the appropriate expression, my face looks gormless and blank, as if I'm not following or understanding the conversation. Should you happen to be in the company of someone with Parkinson's and their face has a masked expression, don't assume they are unintelligent or disinterested in what you have to say. Behind the mask is the same fun, interesting intelligent person you once you knew. 

Caregiver Survival

Receiving news of being diagnosed with Parkinson's is earth-shattering and can feel like the end of the world. Initially the problem may appear bigger than anyone could possibly manage to get their heads around. Pushing away the reality of the prognosis, fighting against the diagnosis and all that follows does not help. A caregiver who sets his/her mind to make the best out of the circumstances and does whatever is possible to help the situation, is not only helping the Parkinson's sufferer, but is also helping him/herself  cope better. By keeping a positive attitude, instead of wallowing in the misfortune of having married someone who has suddenly been diagnosed with Parkinson's, is in fact self preservation for the carer. However, if a caregiver harbours bitter feelings, remains angry, disappointed at what life has dealt out and continually feels let down; although totally understandable, this does not help, but simply exacerbates the problem and causes resentment between husband and wife. Therefore finding a different route, and a way of coping, by working closely as a team, lifting each other's spirits, staying strong for one another, giving comfort and remaining supportive - the outcome is far more rewarding for both sufferer and caregiver.

What triggers Parkinson's?

After having hip surgery six years ago, I soon began to feel shaking in my left leg, and it took just three months to confirm the diagnosis of Parkinson's. Other symptoms followed quickly, and today I am not in the best of health. Having heard from many other patients, there seems to be a common thread amongst some Parkinson's sufferers. Many have similar stories to my own, having had surgery, some even hip surgery in particular, and soon after diagnosed with Parkinson's. This brings to question, is it the shock to the system of the surgery itself or the anaesthetic that "triggers" the Parkinson's? I don't know if any research has been done regarding this idea. I'm not saying for one moment that I wouldn't have got Parkinson's had I not had the hip surgery, for even without the surgery, I am sure that Parkinson's would have arrived on the scene at some point, just maybe a little later in my life. I would be interested to hear from any other patients who have similar stories, or from anyone who is doing research on this specific topic.

Take back your life

If you are letting Parkinson's rule the day, take hold of your life and get back in the driving seat; control what you can and make necessary changes in your lifestyle for the best quality of life possible. Don't let Parkinson's get the better of you. Gather your strength and fight tooth and nail if you have to. It is easy to slip under, becoming lethargic and surrender to this unrelenting disease, but it takes great determination and a fighting spirit to keep going, staying positive and never giving up hope. It's an uphill battle most days for Parkinson's sufferers along with their caregivers. I am no different from you. I have good days and bad days, I have dreams and I have fears; we all do. I have been writing a daily blog since September 2011 with the aim of sharing my thoughts and experiences as I journey forward in life, speaking honestly, I hope I have given you food for thought. There are many official sites on the Internet written by doctors or scientists revealing a fortune of valuable pertinent  information. However educational these sites are, they have been written by those studying or working with Parkinson's but don't actually suffer from this disease. I  write in a straight forward raw manner from the patient's perspective. Only a Parkinson's sufferer can truly understand another, and only a caregiver can totally empathise with other carers. I've had Parkinson's for six years now, and my body is tired. I'm not talking about the kind of tired where a good night's sleep will suffice; I'm talking of total exhaustion that makes one wonder how much more one can take; I can barely move my body in the mornings from the pain and rigidity. Yet I force myself to get up and continue to write. People from all around the world are reading my poetry, my blog and articles, so it is in fact you, my readers, I have to thank, for you give me reason to keep writing. 

Blocking out disturbances

With many workers in and out of our house finishing the last bits and pieces, touching up paintwork, fixing small faults, I find the constant noise of them shouting at each other grates terribly on my nerves. Normally I cannot tolerate loud music, but desperate to drown out the disturbing sounds of workmen shouting, I put on Phil Collins - full volume - and it worked a treat. Unable to hear the men at all, I could ignore the fact that there were workmen everywhere. I am sure they must have thought this strange English woman who shuffles around the house must be hard of hearing. Little did they know that I was drowning out their voices. I'd rather listen to Phil Collins any day! I did try to sing along, but my voice has little power left, and I must have sounded like the cat that unfortunately entered our garden at his own peril and ended up being "played with" by our over enthusiastic dog! I have also found that listening to loud music, preferably with a good strong beat, (nothing soft like a lullaby) works at night too. If I've trouble sleeping due to Parkinson's and especially when I have unpleasant internal tremors, listening with earphones to loud rock music, literally makes my brain concentrate on something else, easing the symptoms considerably. My husband is delighted at this new found solution as he loves listening to music played loud. I'm not sure that the next door neighbours will be quite so pleased.  
Take a look at my latest article on The Huffington Post. I wish you all a wonderful weekend.

Valentine's day

The 14th February is Valentine's Day, celebrated in many countries with the customary giving of flowers, heart shaped chocolates and cards. Finding any reason to celebrate and have a good time, I'll be making a special dinner tonight and I think we'll open a bottle of wine, or maybe have some cocktails (shaken not stirred of course!). There is an adorable film called "I Hate Valentine's Day" that came out in 2009 starring John Corbett and Nia Vardalos. If you haven't seen it, it's well worth watching. Spending most of my time at home, I grab any excuse for a celebration, so today I'm not going to think about Parkinson's and I wont let it ruin my day. I am pushing it out the door, like an unwelcome relative that came to stay overnight, but ended up moving in permanently. I actually know of someone's grandma who came to visit for the weekend and ended up staying 17 years! However she was a lovely lady and welcomed into the family with open arms. Wherever you are, and whatever you do today, I hope you have a lovely time should you decide to revel in a little romance. 

Depth perception

Parkinson's effects every facet of one's well being, including eyesight. My eyesight is quite poor now, but in particular I have noticed a change regarding depth perception. When we moved into our new home, I was looking forward to putting away all the kitchen utensils, dishes, pots and pans that I have acquired over the years. I had planned where I thought everything should go, but somehow, despite the many cupboards, it wouldn't all fit in. I couldn't believe everything fitted in my old kitchen with no problem, and yet here in my beautiful new kitchen with lots of cupboard space, something was terribly wrong. My husband who quite frankly has more than enough to do, without needing to get involved in the kitchen which is most definitely "my area" decided to step in. He could clearly see that I was having great difficulty so gently took over and in no time at all, had completely re-arranged the contents of the cupboards, fitting everything in with space to spare, and in a manner that is easy and logical. I was delighted with the end result and thrilled that he could do what I had not managed to, but at the same time, I was deeply upset as I realised, I had hardly noticed another change has taken place. My lack of depth perception means I can no longer judge a space and see what fits in it, and a simple job which should have been a pleasurable one, left me feeling sad at my failing abilities. Parkinson's is a perpetual thief who seems to keep coming back and stealing just a little bit more. 

Dragging one's feet

Talking with a fellow sufferer is totally different from talking to anyone else. Recently whilst chatting with a friend, both understanding each other as we had a good moan about the various annoying symptoms and scenarios we find ourselves in thanks to Parkinson's,  she gave me much food for thought. I had to share with you, as anyone suffering Parkinson's could empathise how she mentioned about being told to pick her feet up when walking. I immediately remembered my neurologist and the physiotherapist telling me the same thing. But this is far easier said than done, as anyone with Parkinson's will confirm, lifting one's feet up instead of shuffling is quite difficult and takes great effort and concentration. I know that the best footwear is an orthopaedic sport shoe with flexibility, support and a non slip sole, yet the laces present a frustrating struggle, where as my orthopaedic mules slip on and off with ease but are not the ideal footwear for a Parkinson's patient. My family have become accustomed to hearing my shuffling house slippers as I move around at home. At the beginning they found it quite annoying, but I think they are used to it now, and like a cat that wears a bell, allowing you to always know where it is in the house, my family always know exactly where I am - all they need do is listen for the shuffling feet!

Guilt

Guilt like a festering wound can gnaw away at one's conscience and drive you to distraction. Although logically I know I didn't choose nor am I responsible for having Parkinson's, as nonsensical as it may sound I still feel guilty. It isn't easy when faced with a life changing situation that automatically effects those you love, in particular one's spouse. Having a disease like Parkinson's is the last thing I would wish for, and my dearest husband doesn't deserve this unfair turmoil that has descended upon us. If I could give him the sun and the moon I would, but right now, I would settle for a cure to a disease that destroys millions of lives around the world. "Parkinson's" - how I hate this word - a name that once belonged to a doctor who was the first to record his findings of a strange new disease he called "Shaking Palsy". Little did he know, he would go down in medical history and millions would utter his name in horror when diagnosed. He probably did not realise the magnitude of what he had stumbled upon and barely understood the illness in 1817, and how many would suffer in the years to come. As logical as I can be, I still feel responsible and guilty for my family's situation.  It's human nature to take blame in such a scenario, however absurd this may seem, when I see the necessary change in lifestyle, plans we'd made for the future that are no longer viable, financial burden that besets any family stricken with chronic illness, along with the on-going physical and emotional difficulties that are a daily occurrence. How could one not feel guilty with all this upon one's shoulders? 

Depression untreated

A vast number of people suffering Parkinson's experience depression, but many go unrecognised and untreated. Due to the masking effect (expressionless face), fatigue and sleeping problems that are all part of Parkinson's, it is often very difficult to differentiate between the regular symptoms of the disease and that of depression. Diagnosing depression requires someone familiar with Parkinson's who has experience in this particular field. Depression if not treated, can actually make the condition worse. Living with a chronic disease (or in my case two diseases!) can result in social isolation, so I find myself in a catch 22 situation. I have very little energy and my mobility compromised makes it difficult to socialise, yet as human beings we all need interaction with others to keep a healthy emotional outlook on life. Parkinson's disease, by its very nature affects chemicals in the brain, and it is these very chemicals that are responsible for our emotional feelings. The shame and stigma attached to being depressed and requiring treatment should be shown the door. It is not a defect in one's character, but a part of the disease itself, and therefore should be treated with the dignity afforded all the other unpleasant symptoms. How sad that some people will openly talk about resting tremors or shuffling as they walk, but bring the word "depression" into the conversation, and I feel like we're back in the middle ages. Let's move forward and tackle these issues head on. I think its about time, don't you? 

Caregiver burnout

Unlike some diseases, a Parkinson's patient can live a long life, therefore the prospect of the caregiver taking care of a loved one for many years to come may be overwhelming. It is therefore vital that the long term caregiver doesn't neglect his/her own health, avoiding regular medical appointments or tests. Having a hobby or physical activity is a great outlet for the caregiver. Family and friends can help by thinking of inviting the caregiver to events or social gatherings. Just because a person with Parkinson's may not be able to partake in a particular activity, don't forget about the needs of the caregiver who is able and may enjoy participating. Chronic illness can cause the relationship in a marriage to change considerably, and instead of being an equal partnership - the balance unquestionably shifts. The one who takes on the role of caregiver has increased responsibilities than the spouse who is ill, and is often left feeling guilty and inadequate; more like a "patient" than one half of a team/couple. Keeping family and friends living long distance in the picture is important too, and they can help in various ways despite being far away. Even a telephone call once a week to ask how the caregiver is holding up, sending a card, e-mail or parcel filled with the caregiver's favourite "goodies" can brighten his/her day, thereby letting them know they are thought about and appreciated. Lightening the load of the caregiver to avoid "burnout" just requires a little imagination and thought from family and friends. Small gestures can bring great comfort to a caregiver who may look like they are holding it together on the outside, but underneath that cool "got it under control" exterior, there could be a drained individual in distress. Pay attention and do what you can to help. Don't wait to be asked, or leave it until it's too late.

Take a look at my latest article that appears on The Huffington Post.

Rest

Knowing when to push yourself and when to take a rest isn't always easy to decide. I believe it is my fighting spirit and desire to do as much as I can that keeps me going. However, there are occasions when I'm exhausted, worn to a nub as my friend would say, and simply need to sit or lay down to rest. It's not in my nature to lay in bed, and therefore I find it difficult to take an afternoon nap when my body is calling for one. Being able to pace one's activities is important, and I'm far better at telling others to do this, than follow my own advice. Sometimes I get carried away, wanting to finish whatever it is that I am doing, so that I will feel some sense of accomplishment, but end up pushing myself too far. Then with my family's words of "I told you so" ringing in my ears, I end up paying the consequences of my actions. I don't push myself to the limits out of stupidity or arrogance, but out of frustration at what I am no longer able to achieve. Adjusting life to my present abilities is extremely hard, and with much reluctance on my part, I have to make changes and allowances. Mornings are the best time for me, but by lunch time, I am already past my best, like a food item that has passed its "sell by date". As the afternoon and evening approach, my energy level and abilities decline, and by 10 pm I can hear my pillow calling out my name. It's a fine line between doing all you can and keeping as active as possible without over doing things and making the situation worse.

Soap story

Well my dear canine companion has been at it again. I found the soap dish from our bathroom on her blanket in the lounge. She had sneakily pinched it from our bathroom and was trying to stash it away without anyone noticing. At least this time there was no soap in it, so she had not ingested yet another bar of soap. As I showed her the empty soap dish and scolded her, she held her head down and tail between her legs, she clearly knew she'd been a "bad dog" and needed to clean up her act (sorry - I couldn't resist the pun!) I attempted to figure out if she was trying to tell us something, but for the life of me I can't think what it could be. Is she telling us she wants a bath? or that she's peckish and in need of a snack, or maybe she barked something offensive and punishing herself washed her mouth out with soap and water! The latter I find hardly plausible. If only she could talk - it would make things so much easier. If anyone out there also has a dog who insists on eating soap, please do write and let me know your thoughts, for we are mystified and can' t work out this sudden odd behaviour.

Made to measure shower bench

Having a special built-in bench in our shower, I was asked by our builder what size the seat had to be. The height was easy to work out, and able to immediately give him the measurement, but he also needed to know how deep to make the seat. Ladies; have you ever put on a pair of trousers and asked your husband "do these make my butt look big?" Of course, a man never knows if to answer truthfully and bear the consequences, or if he is supposed to tactfully lie; left totally confused and clueless as to what is expected of him. Well you can imagine my surprise at the builder asking such a personal question, not expecting to be asked how big my bottom is and what size seat I would require, but upon reflection, he was just doing his job. After having a wonderful shower yesterday, sitting comfortably on my little bench, that has been made custom made especially for me, I now understand the importance of knowing the size of my rear-end! The bench looks tiny, so next time I feel I look large in a piece of clothing, instead of asking that dreaded question of my husband, much to his relief, all I need do is go and look at my shower bench to be reassured. They say that size doesn't matter, but sometimes it does, so when I see my tiny shower bench it makes me feel so much better!

Understanding Parkinson's

I was very happy to recently get together for lunch with a super lady, who like myself, suffers from Young-on-set Parkinson's.  Her charming parents also joined us for lunch, along with my husband and daughter. Talking with a fellow sufferer, is completely different from talking to anyone else. As soon as I began describing a situation or some difficulty I have, I knew she would immediately understand. I barely had to finish describing what I was feeling or thinking, as she too goes through the same things, having similar thoughts. We spoke about being at a function, a party or wedding, and how it is no longer a pleasant occasion, due to the difficulties compounded by having Parkinson's. Just sitting at a table with a large group of people, trying to follow several conversations that are going on at the same time is impossible. One on one conversations are manageable, but put me in a crowded room full of people chatting away, and I feel most uncomfortable, overwhelmed and unable to handle the situation. If you don't have Parkinson's, you might find this difficult to grasp, but if you are a fellow sufferer, you will no doubt understand completely. Most people don't realise how many unpleasant symptoms and side effects that this rotten disease unleashes upon the unfortunate patient diagnosed with Parkinson's. In my latest article in The Huffington Post, I wrote about the symptoms, but these were merely some of the more common ones. There are many more - but somehow I didn't have the heart (nor the space) to write about them all. It appears that there is a wide range from mild to severe cases; whilst some patients have few symptoms and manage to live a fairly normal life for many years, there are others that suffer a more aggressive debilitating form of Parkinson's and whose lives are affected very much.

No regrets

Being able to say you have no regrets, and really mean it is indeed an achievement. I'm always saying "live life to the full, don't put off tomorrow what you can do today". Material things matter not, it is what you do with your life and the time you spend with loved ones, whether they be family or friends that really counts. Make wonderful memories that will keep you warm and make you smile as the years pass. I don't want to ever be in the position of looking back and thinking to myself "what if?". Even when the odds seem against me, this does not deter me from making the most out of every moment, and enjoying life.

Getting together with a fellow sufferer; having much in common, is of great support and comfort to us both. She told me of someone in their nineties who had said something that struck a note:  "my memories have become my enemies". I have never heard anyone say this before, and although found it sad that one should view their life's memories in this negative way, I did understand that the lady was referring to all the things she could no longer do, and living so long, had no doubt lost many family and friends over the years; a painful experience for anyone.

We all have baggage, that's part of life, and some of it is not so good, but you can't change the past and so I've found it's far better to concentrate on the present. Life can be hard and far too short to waste. Make the most out of what you have, and live in the moment.

A morning like no other

Our dog is not allowed in the bedroom and normally obediently refrains from entering. This morning however, I spotted her looking very guilty as she skulked out of our bathroom hastily chewing and swallowing the last remaining evidence of what she had found. Taking a quick look at the white foam dripping from her chin, and evidence of an empty soap dish laying on the floor, I didn't need the help of Sherlock Holmes to work out that our dog had indeed eaten a bar of soap! Why she had eaten the soap; who knows? I have a fair amount of experience with dogs, but have never heard of a dog eating soap! Before I had a chance to contemplate if I should telephone the vet, I was distracted by a bright bolt of lighting that lit up the entire room. The heavens opened and a huge clap of thunder accompanied the teaming rain that came down in a torrent, turning  the garden into a muddy mess, which was immediately followed by an electricity cut. I hadn't opened the electric blinds since getting out of bed, and the house was more or less in darkness; with no electricity I was now unable to open the blinds to let the daylight in. So there I sat in the darkness, listening to the storm outside, huddled next to our soap eating dog, wondering how I was going to receive guests that were due to arrive in three hours!  This was how my day started. Thankfully the electricity resumed after an hour and the rain began to let up a little. The dog looked fine, so I didn't bother calling the vet, and somehow I managed to get everything ready in time for my guests whose company we thoroughly enjoyed. I hope tomorrow morning will be less eventful. Thank goodness it's the weekend!

Here is my latest article in The Huffington Post.