Faith

Parkinson's can affect anyone - it's not fussy, and doesn't discriminate, no matter what age, religion, what your background is, where you live, if you are rich or poor, whether you're old or young. Having faith, whatever your religion or beliefs, gives many people the strength and conviction which helps them accept illness, disability and even death as part of an eternal plan that we do not have any control over. Some might see these as lessons in life or some sort of initiative test we have been assigned. Maybe it is simply human nature to want and need to believe in something. Whatever your beliefs, one's faith understandably might truly be shaken up in times of great hardship, particularly when illness is involved,  making us re-evaluate our belief system. Why do such terrible things happen to good people? Blindly having faith that makes us close our eyes and believe, may give some the strength to carry on, but others can become disillusioned and discover their faith slips away. Don't worry what others may think, do whatever works for you, and what is ultimately in your best interest. 

Call for Help

Having Parkinson's for several years now, my family know me only too well, and over time have come to recognise the signs when something is wrong, if I'm in pain, or simply having a bad Parkinson's day. Particularly my husband and daughter know instantly when I call out for help according to the intonation in my voice. Getting dressed can be quite a challenge, and if I get stuck in a piece of clothing, not able to put it on fully, or remove it altogether, my cries for help are unmistakable, and who ever comes to my rescue usually gets a good laugh seeing me unable to escape my confinement, entangled like Houdini in one of his famous acts. So you see, I do try my best to keep the family entertained!  If I shout in an urgent fashion from the bedroom that I need a bucket; fast as lightening, a bucket appears by my bed, as little explanation is necessary, for it is quite clear, feeling nauseous I probably wont make it to the bathroom in time. There are other times when they hear something smash and me shrieking, which is often followed by some choice words that a 'lady' should never be heard uttering, as I accidentally drop and break something. But despite the difficulties that daily plague my life, never knowing if a day is going to be good or not; I live in hope. I hope you'll take a look at an article I wrote for The Huffington Post. Wishing you all a good weekend, and if like me, you suffer from Parkinson's, may you have more good days than bad.

Balancing act

It gave me great pleasure the other night, sitting around our dining table, looking at all the faces of my family. Everyone was busy eating, drinking, chatting and laughing. Taking it all in and enjoying the moment, I wanted to savour the feeling of complete contentment and sheer delight, entertaining those I love in our home. People are often very quick to assume that it is too much for me to have guests over, and in a way they are correct, for this takes a great deal of effort and energy, and afterwards it can take me a day or two to recover from this activity. Yet the emotional benefits of having people I care about come to our home for a meal, or even just coffee and cake brings fresh life into the house and the pleasure enjoyed most certainly is worth it. It's a matter of finding the right balance I've found, keeping up a social life and inviting guests, whilst making sure not to over-do things and take a day or two in-between events to recover. I try to think ahead and plan carefully, often making lists for myself so that I don't forget something. Being methodical and  organised by nature, helps me cope, and although it takes me twice as long as it used to doing anything, I somehow manage. As beneficial as it is for me to have guests visit, it is equally as important to my husband and daughter. Trying to live as normal life as possible taking into consideration my limitations is a continual  balancing act. 

A smashing time!

Our drinking glasses have been disappearing slowly but surely leaving us with an odd assortment. I have lost count of how many I've broken, but thankful they have been every day ones and not good crystal glasses, which I avoid like the plague. We eventually decided it was time to replenish our poor non-matching selection and bought several different size glasses, all in the same style. What fits my small unsteady hand is far too small for my husband's. They stack one in side another which makes for easy storing and seem quite robust. Having Parkinson's makes one look at everyday things that possibly someone else would not give a second glance. We were at a café and ordered coffee, but when the coffee was served, the handle of the cup was so small, I could not fit a finger inside, and positioned in such a way that I couldn't grasp the slippery porcelain handle securely enough. I ended up cupping my coffee with both hands as if I was in freezing conditions on a mountain side somewhere warming my hands. I don't know who designs these "fashionable" cups but they are a Parkinson's nightmare. Simple things like cutlery can make a difference too, with thick handles, it is far easier to hold. My toothbrush for instance has a very thick handle, and any pen I write with, also appearing child like, has a thick body enabling me to grasp it a little better. When buying something like drinking glasses, cups, pens or your toothbrush, before you purchase make sure you hold it in your hand and see if it is suitable for you. 

Medical marijuana

One of the many symptoms of Parkinson's is pain - some of which is understandable, but much of the pain is inexplicable, leaving the patient in constant misery. Latest research has revealed that genetic factors may be able to explain such pain, and new understanding will enable a unique treatment to be available. According to a recently published research paper in "The European Journal of Pain", variations of functions were observed regarding pain connecting to cannabis-like substances in the brain. The results of the Neurology Department reported that the results support the treatment of Parkinson's patients using medical marijuana. Further research is going ahead, looking into the use of cannabis for pain relief. A large percentage of Parkinson's patients suffer from unexplained pain, and if this symptom can be relieved, the quality of life will certainly be increased. The medical cannabis can be administered by liquid, (not dissimilar to an eye dropper bottle), thereby ensuring the precise amount is given by the exact number of drops administered under the tongue, for the optimum dosage according to each patient. Constant pain is very draining, and as the findings suggest, this could well be a future option for some patients.

Parkinson pains

Many don't associate Parkinson's with having pain, when in fact unfortunately, there is a great deal and variety of different pains experienced when suffering from Parkinson's disease. I'm especially lucky (forgive my British sarcasm!) for having a double dose due to Parkinson's along with chronic bone pains from Gaucher disease. A while back , I was able to differentiate between the Gaucher bone pains and those related to Parkinson's, but of late, the pains are so constant and almost everywhere in my body, it's now difficult to pinpoint what belongs to which disease. But most definitely Parkinson's is painful. Just to clarify; there is pain in my shoulders, upper arms, hands, fingers, arms, legs, torso, legs, joints, muscular spasms and cramping. These are to mention but a few. Simply turning over in bed or getting up in the morning is extremely painful and difficult. My doctor recommends me resting each day, but often I can't contemplate getting back into bed for an afternoon rest simply because it is just too painful getting up again. I often rest in a comfortable arm chair in the lounge with my feet up on a foot stool. Now the warmer weather is approaching, I will hopefully be able to rest outside in the garden, warming my painful bones in the sun. So if anyone out there thinks that Parkinson's is merely shaking and tremors, you are terribly wrong. Pain is a huge element of this degenerative disease, and dealing with constant pain is not only very wearing but quite often difficult to manage and find the right pain relief.

Catching a centipede

A friend of my daughter's is studying insects and her homework assignment, as strange as it may sound, was to collect 30 specimens of bugs. Deciding to help and take on this challenge, recently having earth delivered to our garden, I quite quickly managed to find a few every day common varieties. This morning, much to my horror, I found a brightly coloured centipede laying in our kitchen sink. Goodness knows how it got there! It was about 6 inches long and laying very still at first. Immediately thinking this would make an excellent specimen for the young lady studying entomology, the question was now how to catch the little critter with the household still asleep, and my lack of dexterity, extremely stiff painful fingers along with slow reactions, Parkinson's and I were going to have a tough time catching this unexpected visitor. I grabbed an empty clear plastic box and placed it over the unsuspecting centipede, only then realising how fast they can move as it struggled to escape its confinement. Great! now what was I supposed to do? I had no way of getting on the lid. I took a saucepan that was drying next to the sink, and for weight put it on top of the box, lest my captive should escape. Finding a stiff piece of plastic packaging in the bin, it made for a perfect solution, as I carefully slid it under the container, all the while the centipede wriggling and moving at great speed frantically trying to escape. Holding tightly the plastic sheet in place I was able to turn the box up and place the lid on top, sliding the plastic away. Now safely sealed inside the box, still no one was up to see the antics going on in my kitchen, and how despite having Parkinson's I had managed to capture the centipede alive. Why is no one ever around when these things happen? It's like watching someone commit a traffic offence when there's not a policeman in sight. Well after all this excitement, and it's not even 07:00, I think I will put the kettle on and make a hot drink. I hope your day starts "centipede free"!

Parkinson's Awareness Month 2013

As a child growing up in England, April 1st was a day to play tricks on one's class mates (we called it "April Fool's Day"). This date also happened to be the birthday of a beloved aunt of mine. Little did I know back then, that the 1st April would have a very different significance later on in my life. April 1st is the beginning of Parkinson's Awareness Month. By getting together, joining forces, with one loud united voice we can make the world stop and listen, take notice, and most importantly make a difference. If you would like to see 30 ways to raise awareness take a look at The Parkinson's DiseaseFoundation site. Each person is like a singular piece of a puzzle, but put us all together, and you have a clear strong picture. See what you can do this April to be piece of a global Parkinson jigsaw puzzle. Take a moment to look at my latest article on The Huffington Post. Wishing you all a very good weekend, and most of all good health!

Becoming forgetful

I have always been bad at remembering people's names, and as I grow older, I'm not sure if it's my age or the Parkinson's, but this problem is getting worse - and embarrassingly puts me in a tight spot on occasion. A close friend told me recently a trick when this uncomfortable situation arises. Ask the person directly what their name is, to which they will immediately answer, probably assuming you have a poor memory, but before you give them a chance to doubt your mental capabilities, you answer "I knew what your first name was, I was referring to your surname".

I also heard that when being introduced to someone for the first time, if one repeats the person's name and uses it immediately in conversation with them, it re-enforces their name upon your memory.

Maybe this is an old wives' tale, but I read about the properties of cinnamon helping one's memory. Hearing this, I started to add cinnamon liberally to my porridge or cereal at breakfast, to cakes, on top of pancakes - you name it, if you could add a sprinkling of cinnamon I would do so. One day a friend asked me why I used so much cinnamon, and as I was about to launch into "why", I couldn't for the life of me remember!

Everyone forgets things - so don't let it bother you. We are all guilty at times of forgetting someone's name, where we put the house keys, or a birthday. Don't be so harsh on yourself - you are forgiven!

Listen to your inner voice

When instinctively you feel something is wrong - you just don't feel quite right; trust your instincts, for they usually wont lead you astray. If something is amiss, don't ignore it. I was given pain relief medication, and getting a repeat prescription found there was a noticeable difference. I phoned to ask if I had been given the wrong one, or if the company had simply changed and improved its product, but was told I had the correct medication and that it might be simply a little stronger. The conversation was short and I did not feel satisfied or have peace of mind, but trying not to listen to that little nagging voice in my head, I took his unsound advice and continued to take this medication. After several more nights, my blood pressure dropping rapidly leaving my heart palpitating, I telephoned again and this time speaking to a different person, I pushed for a better answer and explained about the symptoms I was experiencing. The lady on the phone told me she would check to see exactly what I had been given, agreeing with me that I should not be experiencing these extreme and unpleasant symptoms. I quickly received a call back from her, apologizing and confirming that I had indeed been given the wrong medication and it was in fact a stronger version, and clearly not suitable for me. What is the moral to this story you may ask? You know your body and what you are feeling better than anyone, so if something seems out of sorts, don't let it go - find a solution or answer that makes sense and ultimately leaves you feeling better. If you don't speak up for you - who will?

Comedian Adam Hills

Having a sense of humour has always been one of my most valuable defences against fighting Parkinson's, and there is nothing quite like having a really good laugh to lift the spirits. Adam Hills is an Australian comedian who was born without a right foot, and through his stand-up comedy act, brings to the stage in a humorous manner questions that so many would love to ask a disabled person. Although his performances contain some explicit language (unsuitable for children and may be offensive to some), he certainly has the ability to see the funny side of life, particularly giving the perception of someone who does not see himself as disabled at all. His anecdotes and tales, although leaving the audience bent double with laughter, in fact address ordinary daily issues of having any form of disability, making the audience laugh with him and most definitely not at him. During his shows he has an interpreter using sign language on the stage with him, enabling anyone who is deaf to enjoy his unique ability to make people laugh about awkward situations, whilst in fact sending an underlying message that having any form of disability makes you no different from anyone else. 

Music Magic

Music has long been used as therapy for many different reasons; not only in nursing homes, hospitals, day centers, but also in people's private homes. The benefits are very plain to see and healthcare professionals often recommend music therapy as an additional tool in treating a long list of conditions such as Parkinson's, depression, strokes, Alzheimer's and brain injury.  Although there is little data proving why music and movement improve certain diseases, there is no doubt that there are positive effects on patients participating on a regular basis. For anyone who has difficulty in moving or speaking, music/dance therapy is definitely worth a try, in particular Parkinson's patients show remarkable improvement, not only with their movement but  lifting spirits, almost like re-charging one's batteries. I find it highly therapeutic listening to music that I enjoy, and in particular, if I am having a bad Parkinson's day, music is a great distraction. I was listening to Christina Aguilera's song "Something's got a hold on me" and felt it was almost written for someone with Parkinson's in mind. Have a listen to the words!

Often people hear songs, but don't really listen to the words. When someone is talking to you, listening is not merely sitting and looking as if you are paying attention; it is taking in every word and processing its meaning, trying to understand a new point of view from a different perspective. Getting people's attention when it comes to unpleasant matters, and things we'd rather not think about is pretty hard to do. Having just had my recent article published on The Huffington Post, I can see that this particular topic still bears much stigma and shame. I hope you will read my article and pass it on to anyone you think may benefit.  

Keeping Occupied

When one is housebound due to ill health, it is vital to keep occupied. When I say keep busy, I don't mean you to go overboard as in moving house, which is taking things to an extreme. Having recently moved home, we've hardly had time to breathe, and only now are things starting to fall into place and some semblance of normality can return. Although it takes me twice as long to get anything done these days, I continue to try and maintain a normal household schedule. I love to cook and bake, and much of my time is spent in the kitchen. Our dog is more than happy to clear up anything I happen to accidentally drop on the floor, which thanks to Parkison's happens frequently, and what husband wouldn't be happy to come home and find a freshly baked cake or cookies. So you can see, I try and keep everyone happy! Writing has become an important part of my daily routine, and has the additional gain of keeping my in touch with fellow sufferers. We try to keep our social life as active as possible, but often by 10 pm. my batteries fade and unlike the energizer bunny who just keeps going, it's as if someone has turned me "off" internally and I'm finished for the day. Finding something that you enjoy and occupies your time during the day, keeps you busy and focused on something apart from Parkinson's; so if you haven't got a hobby or activity, try and find one. It's a good defence at keeping Parkinson's in its place!  

Brain Awareness Week

Another week has passed by, and as the warmer weather approaches, it's very pleasant sitting in the garden. My dog and I both suffering bone pain often sit together companionably in the garden, the sun warming our bones. A good friend kindly took me out the other day as I had small errands to run, and although after a couple of hours I was awfully tired, it was a good feeling to have accomplished something, however small. Often spending days upon end at home, getting out now and then is important. I didn't realise how seldom I was leaving the house till one day my husband took me out, and as I stepped through our front gate, I was astonished to see that a few changes to our road had been made. My husband amazed, looked at me asking "when did you last set foot out of the door?" We worked out I hadn't been out in eleven days! Although perfectly happy and content to stay at home, I realise it is important to venture out now and then. The National Parkinson's Foundation have instigated "Brain Awareness Week" (from March 11th - 17th) which is a global campaign to raise public awareness about the progress and benefits of brain research. They recommend 8 steps to a healthy brain: exercise regularly, eat a healthy balanced diet, give your brain a work-out, stay socially active, reduce any stress as much as possible, get enough sleep, ensure the best medications and supplements for your situation and avoid excessive alcohol consumption. Sounds like good advice to me!

Another day with PD

With my 50th birthday looming ahead, I am beginning to feel like a well matured cheese, not that I smell I might hasten to add, but rather that I'm getting to the point where I've "past my sell by date"! Although according to Oprah  50 is the new 40, she is fortunate enough not to suffer from Parkinson's, not to mention having possibly the largest shoe collection a woman could dream of! Struggling with two diseases, day in day out, takes much effort, but I continue to remain cheery. I think no matter what, this integral part of my character will never cease. A sense of humour gets me through the rough days, and when my body that appears to be falling apart at the seams can't take any more, I resign myself and take a rest in bed. I've never been one for laying in bed,  no matter how ill I feel, so it takes an awful lot to get me into bed for an afternoon power nap. I guess its part of my nature. Friends spontaneously dropped in for a visit the other night, and as there are still little projects to finish in our disabled friendly house, they were soon set to work (probably making them wish they hadn't stopped by!). I jest though, as they were happy to help and we very much appreciated the assistance, and ended up spending an enjoyable evening together, everyone busy doing something. No matter how much planning and thought went into building our disabled friendly home, I knew that there would be something we'd forgotten or didn't think about. It's impossible to get everything 100% perfect, and the other day I found one thing we had overlooked. The bathroom window's latch is too high up for me to reach, so I can neither open or close it. It's not the end of the world, a small error, but I thought I would share it with you just in case you are remodelling - you can learn from our mistake. This is the only thing we have found so far, but other than that, it looks like we managed to take everything into consideration. 

Clenched jaw

When you are as "lucky" as I am, and have two major chronic diseases, it is difficult sometimes working out what symptoms and pains are associated to which disease. Many occasions in the past I have experienced pain in my lower jaw bone which is considered a "long bone" and therefore this unexplained pain that comes and goes is put down to Gaucher disease. Unwittingly, I have recently been clenching my jaw tightly shut, and after some days I realise my jaw is painful and my teeth feel like they are going to erupt. I have since heard from fellow sufferers that I am not alone with this additional symptom. One person had a night guard made to wear during the night to protect the teeth and cushion somewhat the jaw clenching shut and grinding teeth. The pain can radiate up towards the ears and I presume this puts pressure on the teeth too. Having had  a crown fitted recently, I have suddenly found that it feels like it's slipped out of place. I guess I will making yet another visit to our friendly dentist. Just when you think you know all the symptoms that Parkinson's has to offer, something new appears on the scene. I have always meticulously cleaned my teeth twice a day, floss, use mouth wash, and go to the dentist as soon as something appears to be wrong, and yet I am beset with dental problems. I know other people who don't seem to take much care of their teeth and yet require little or no treatment at all. I suppose good teeth is down to one's DNA. How common is this problem? If you have Parkinson's and suffer from unexplained pain in your jaw and teeth, you can leave an anonymous comment below; it would be interesting to hear from you.

Musical therapy

Music has a powerful effect on us with the ability to change our mood quickly from feeling bad to being in a good frame of mind. Music can lift our spirits, make us smile, and if we allow it, touch our very soul. On one of the many times I have been hospitalized , I remember with great pleasure, a man with a violin visited the ward I was in. He went into each room and played beautifully for the patients. I could hear him getting nearer and nearer my room, as the music drifted down the corridor, it got louder, until finally I was treated to a private concert of my very own. On another occasion a local children's choir came to the hospital and with great enthusiasm and beaming smiles they sang cheery songs to the patients in each ward. To have such a treat, whether it be music or singing, really brightens one's day and the monotony of being hospitalized. If you can sing or play a musical instrument, why not give a little of your free time at a local hospital. I can assure you, your efforts will be warmly received and welcomed. I would like to thank anyone who has voluntarily entertained patients in this manner which can bring such beneficial effects, giving pleasure and delight to those who are badly in need of a little diversion. Speaking as a patient, it was an enjoyable welcome interlude and enormously appreciated. If you'd like to see something very cool that an orchestra did recently, take a look at this Flashwaltz performed at a hospital.

You're entitled to moan

You'll have to forgive me, but this morning I am having a good moan! I have officially given myself permission just for today, to complain. If any workmen are reading this blog, I beg your forgiveness for I'm sure that most are hard working, honest and take pride in their particular skilled profession. However this past week I have had the misfortune to come across some workmen who push one's patience to the furthest limits, working so slowly; I'm convinced a colony of snails would move at a faster pace. Not to mention the most unattractive view I have been subjected to. As soon as a worker bends down, I quickly avert my eyes - you know why of course! Is it some sort of unofficial but common uniform they all seem to wear? Yes, you've guessed what I'm talking about! The trousers that look like they're about to slip down at any given moment, revealing underpants that do not cover, hence revealing a part of one's anatomy that should not be on display! I have also noticed that apart from not being perturbed  by their distasteful attire, clearly another requirement of being a workman is having good healthy lungs. I've been subjected to listening to some very loud heated shouting matches, and despite having all the windows and doors closed, I can still hear them outside. Yesterday I was near to losing it, and decided to drown out their presence with my MP3 player. Ear plugs firmly pushed in, I turned the volume up and before long felt much better, and unconsciously began to sing along with the music, as I'm sure most of us have done from time to time. I was suddenly made aware of my daughter standing by my side, telling me that she could hear my singing from upstairs with her bedroom door closed!!!! I had no idea I was singing that loud. Not being able to hold a note, my singing leaves much to be desired; is it any wonder that the workmen packed up early and went home!

Being a good friend

If you can count a number of friends on one hand you are lucky. True lasting friendships  are not built overnight, and trust is earned over time. Loyalty, honesty and the ability to share completely, giving and taking is a two way street. A healthy relationship can stand the test of time; women in particular have a "sisterhood" of sorts to call upon, to celebrate good times together and be there when life smacks us in the face, and we take a fall. This is when a friend steps in by gently helping, reaching out with a caring hand. Being genuinely happy for a friend when they succeed or advance in life and accepting the changes they experience with an open heart, is real friendship. As we grow, mature, experiencing different things, it is not possible nor healthy to remain exactly the same person you were when young. It can be a test of character for those who resent changes, or may have been doing better at one stage and now that the tables are turned, you are making a success; changing the balance and a shift in the relationship with which they can't cope. This is a sad but common scenario. A friend who cannot grow and change with you is not a real friend in my eyes. I am fortunate to have a number of ladies whose friendship I treasure and hold dear, and despite having poor health, they continue to stand by as my life changes due to Parkinson's. Life is full of surprises and I am constantly amazed at who lets me down, and even more astonished on occasion at who steps up to the mark without hesitation. Life isn't easy, and relationships can be complicated, but wouldn't life be boring if we were all the same?

Abuse of chronically ill children

A child who is chronically ill or disabled to some degree, weak and fragile, can easily fall victim to sexual abuse. An ill child is at high risk, for being so young, they don't entirely understand what is happening, and often unable to communicate what is actually going on. What makes these children in particular fall prey to what can become constant ongoing abuse lasting years, is the mere fact that the child is cloistered within the family due to ill health, and dose not lead a normal life interacting with other children and sometimes missing many days of schooling. Despite the fact that a child in this situation may be in and out of hospital on a regular basis because of the disease or disability which is taken care of, doctors so concerned about the issue at hand, often miss or overlook the tell-tale signs of an abused child. Even the school may not pick up on any odd behaviour, putting any peculiarities down to the child's health issues. Whether a child is suffering a chronic disease or mental illness, their symptoms are all that anyone sees or is concerned with. As harsh as this may sound, it is easy to happen, and sadly a child may endure years of suffering, until finally the nightmare comes to an end. If you are a caregiver of a child who is unwell, pay attention, don't miss the little signs, or dismiss a strange story that your child may be trying to convey. More than often the perpetrator is someone in the family or close by who has constant and easy access to the child and who also horrifyingly has your trust!

Have a look at my latest article on The Huffington Post. Have a good weekend, and take care of yourself.

Hope

Call me hopeful, an optimist, or even over enthusiastic, but I truly believe somewhere out there, someone has found, or is in the process of discovering out how to stop Parkinson's from progressing. The missing link, a piece of the puzzle that would complete the picture, cannot be too far away. So much research, studies and money is being spent on finding a cure for Parkinson's which affects millions of people worldwide, maybe we are closer than we think. Why do I tirelessly keep writing? speaking at every given opportunity, advocating and campaigning? Because my future and yours depends on it. If we can all do our part, make as much noise as possible, generate awareness like never before, something has to come from this global effort. I dream of being cured of Parkinson's, and living a normal long life with my darling husband by my side. I want to be here and still able to walk when my daughter marries one day. I would love to experience for myself the joy I see others who take delight in becoming grandparents. To grow old with my husband and to be a burden on this family no more is my greatest wish. Why shouldn't wishes come true? Maybe it's about time this one did! 

Take a look at some very interesting progress that the Albert Einstein College of Medicine regarding the most common genetic mutations in familial Parkinson's disease damage brain cells.

Tremendous Response

After writing a recent article for The Huffington Post, entitled "What triggers Parkinson's Disease" I received many e-mails from people all over the world, with similar stories to my own. Most of the accounts described some form of surgery or serious illness, that had caused hospitalisation, trauma to the body and emotional well-being, along with long recuperation (understandably with little physical activity whilst recovering) and then within a short period of time the first symptoms appearing, eventually leading to a diagnosis of Parkinson's. Firstly thank you to all those who took the time to write to me; and I hope that someone involved in Parkinson's research has picked up this idea / reasoning, or maybe there is already data being collected along these lines. It can't be purely co-incidence to find so many people with similar reports and thoughts on what triggers Parkinson's. If you have a similar story to tell and you would like to share it, please leave a comment below.

A Caregiver's perspective

Here are a few more thoughts from a caregiver:

"Nothing in life is static; everyone needs some assistance, support and help, taking each day at a time. It's probably best not to attempt looking at the entire picture, for it's too big and can be overwhelming even for the most well adjusted person. Feeling good about yourself is good for you and also beneficial for others. Bitterness begets bitterness, so endeavour to find joy each day, no matter what or how small. Stay true to yourself, whilst reaching out to others, and you will find compassion is returned to you - a sort of "pay it forward" scenario. There can be gratification in helping the one you love, if done with a willing and open heart. Try to remember and cling to the happy moments and wonderful memories; it will keep you in good staid later in life. Everyone has good times and hardships in life, so try to share with others to an extent what you are experiencing."

I appreciate the openness and frankness that has been shared, and I hope that seeing things from a caregiver's perspective will further understanding of this important role that many play around the world. 

Not easy being a woman

The sweltering heat of the summer this year somehow appeared hotter than last year; it's the global warming and the ozone problem I keep telling myself. In reality there's a far more simple explanation: it's the menopause! However in the winter having an internal heat wave fire up like a furnace certainly keeps one warm on chilly days. Why did mother nature bless women with the addition of an extra little something special to keep us busy later on in life? As if wrinkles, laugh lines, hair disappearing and reappearing where least desired, and certain parts of our bodies surrendering to gravity in some kind of manic race to reach the floor is not enough; we are also subjected to hot flashes. You can always spot a woman in menopause, for she is wearing layers, so when her personal thermostat goes awry, a quick rendition of "the dance of the seven veils" is performed as layers of clothing are quickly shed. As for the beads of sweat that start dripping down one's face - how attractive is that? Standing in the post office, any woman fanning herself with the bills she is about to pay, or sticking her face in the open door of the freezer for some respite - are all unmistakable give-away signs of a woman going through menopause. So how lucky am I to have Gaucher, Parkinson's and to top it off, the menopause? I think in my next life, I'm coming back as a man. Men seem to have a far easier time of it.

Looking forward

I'm not too sure who wrote the following quote: 

"Never let your past experiences harm your future. Your past can't be altered, and your future doesn't deserve the punishment." 

I  think there is some truth to this. Dwelling on painful past events is not constructive or productive; if anything it is detrimental to one progressing in life. My mother always used to say "no use crying over spilt milk" and as a child, hearing this over and over would irritate me no end. However, on hindsight, I guess she was right. One can't change the past, you can only do your best, move forward, gain experience along the way, and hopefully live a life with no regrets. 

Many years ago a fortune teller knocked on our door selling small bunches of heather. Not believing in such things, I nevertheless let the lady take my hand and watched her face as her smile faded and she looked into my face with great concern. "You will not end your days in this house" she told me, which of course came true as we've moved several times since. She then mentioned something about ill health and my head in a vague uneasy manner, to which I paid little attention at the time. Upon reflection, I wonder if she really saw that I would be struck down with Parkinson's. Knowing one's future is definitely not a good idea, and it was probably just as well that I took little notice of her predictions. I have a feeling this unpretentious lady with her basket of heather was no "fortune cookie" but possibly authentic. Although I bought the bunch of heather, I wonder why she never knocked on our door again?

You have the power

Being diagnosed with any degenerative disease can turn one's life upside down. A metamorphosis takes place, as life changes, so it's important to go with the flow. Don't fight it, or try going against the current. Let life's course take you, making the best out of a bad situation is vital to one's survival. Life without dreams and hope can be depressing. We have to get through with the belief that all will somehow be OK - both sufferer and caregiver staying positive.

Every caregiver needs a special place, a social activity or hobby that is purely theirs. Somewhere calm and pleasurable to re-charge emotionally and physically. The sufferer must acknowledge this need, allowing with a full heart, encouraging the caregiver to do so, in order that he or she remains strong and able to continue caring. If you are a caregiver; dream like you've never dreamt before - go for it. Make your own bucket list. No matter what your situation, no one is promised a perfect life; it is up to us to make our own happiness.

What do you do to cope and make it through each day? What changes have you made to keep some semblance of normality?

Grab your coffee and take a few minutes to read my latest article on TheHuffington Post entitled "Don't let a disease define you".