Harsh question

I was asked a rather harsh question yesterday which at the time felt extremely cruel, yet later upon reflection, I thought this valid subject needed addressing. I was asked “Do I feel guilty that my husband and family have the painful task of taking care of me now I have Parkinson’s?” My answer is this: YES of course! But (there’s always a ‘but’ as nasty as this little word is!) no one knows what tragedies or ill health await us, and it's probably better this way, for if we knew what lay in store, it would without doubt be too much knowledge to cope with. When marrying, as the famous line we've all heard a thousand times comes to mind, ‘for better or for worse'’, you fall in love, marry, start your new life together with hopes and dreams for the future, but none of us know for sure what lays ahead. Some lucky couples are blessed with good health, and some like me are unfortunately afflicted by ill health. But with any affliction, something good always accompanies it, you just need to have ability to see past the initial shocking realisation to comprehend that this may not be what you expected, but it’s not the end of the world. I would be in denial and lying to you if I were to say that I didn't wish I was healthy and strong, and that my life hasn't changed drastically over the last few years ultimately changing that of my husband and family. However, love that is true and steadfast will stay put like superglue, despite all the difficulties we are put through, and are held very much together by this invisible bond. So yes, I admit there are times I feel guilty at what my husband is missing out on, and the things he has to now do for me, but it is counterproductive to ponder too long on these negative thoughts. This is what life has dealt me, so we make the most of it. A marriage certificate has no ‘good health clause'  in it; there is no guarantee or sale and return. You marry someone because you love them with all your heart, and together accept whatever the future will hold. On the positive side, it has given us the wonderful opportunity to help others, and this is priceless.

Not easy

Taking care of someone with Parkinson’s disease is far from easy. The shock and realisation that life will never be the same again is a hard pill to swallow. Plans and dreams for the future are suddenly shelved and life as it once was, changes drastically touching every facet of daily routine and ability to be self-sufficient. Sadness, anger and guilt take front seat, and many deep emotions come aboard for the Parkinson journey. Sometimes simply too painful to talk about openly and honestly, feelings are kept hidden, but like a festering sore, things won’t improve if not dealt with. Candid discussion and frank communication is the key.  

Pretty pink present

I have been using my husband’s computer to do all my writing until now, but was presented with a laptop of my own yesterday. The keys on the keyboard are easy for me to use and having tried several other types this is definitely a “Parkinson’s friendly” keyboard. If you are considering purchasing a new computer or laptop, do make sure you try out the keyboard sufficiently to ensure that you can use it. I tried many that looked very nice, but the keys were too closely spaced together and it’s not just the spacing, but the touch and feel of the keys which are equally important. So at the ripe old age of 48, I have for the first time my own computer which I have to tell you is great, and much to my delight is a pretty shade of pink! 

Still writing

Many people ask me if I am still writing at all hours of the day and night, and the answer is a resounding “yes”! Whilst most of you are sleeping soundly in your beds, some Parkinson’s patients idle away the night hours as insomnia dictates. During those hours that sleep eludes me, the house is tranquil and quiet, a perfect atmosphere to immerse myself in writing. I am sure that each Parkinson’s patient finds something to while away those frustrating hours, when one would much rather be snuggled under the bed covers  peacefully drifting off into the land of dreams. So now it is light, yet another night has passed, the phone begins to ring and the familiar sounds of traffic, people walking by on the street, and the array of noise and distractions that accompany a regular day return. I wish you all a very good day, and as always, good health!

Cheeky driver

There are some bad drivers around, who seem to think that they own the road and woe betides the person who gets in their way. Some months ago, a man cut me up, forcing me to make an emergency stop. Sitting there stunned, looking at him over the top of the driving wheel, I should imagine the expression on my face said it all, and if steam could have come out of my ears, it surely would have. Knowing full well he was clearly in the wrong, and realising he had almost caused an accident, not only did he have the nerve to smile at me, but had the audacity to blow me a kiss as he drove off! When someone acts unexpectedly like this, what are you supposed to do? I guess I have to be thankful that he didn’t shout or swear at me whilst making rude gestures!

The weekend

As the weekend approaches, you can almost feel the country heave a sigh of relief. Offices close, busy high streets are emptied, banks and institutions shut their doors, and the fast pace of the business week is put on hold temporarily. Opportunity to spend quality time with family and friends, plans and arrangements made in advance, awaited with expectations, fall into place. The weekend gives us a chance to reflect over recent events, taking a break from normal daily routines and activities. Whether one simply relaxes and has ‘time out’, or fills the weekend with enjoyable socializing or hobbies, hopefully our physical and emotional ‘batteries’ are recharged to face the coming week. Have a good weekend everyone – and enjoy life.

Listen to your body

Always pay attention and listen to your own body. You can often be the best advocate, for you know yourself better than anyone so if something feels wrong, seek medical advice. Many people ignore signs or symptoms, waiting too long wasting valuable time and possibly costing you effective options. I  have always spoken candidly to doctors, for I believe divulging the full picture,  gives necessary tools with which to make a correct diagnosis. I am very fortunate to be in the care of some of the most highly regarded specialists in the country, and for this I am forever grateful. 

Swings and Roundabouts

Getting the medications right for any Parkinson’s patient is a long journey requiring much patience, and trial and error, until the suitable pills along with dosage can be found. Obtaining the right balance to ultimately improve the ongoing symptoms that can be so debilitating and humiliating, is no easy task. There are benefits and side effects to most medications, and it’s a matter of swings and roundabouts whether it’s better to put up with certain unpleasant side effects in return for the desired gain. Having just added another to my ever growing cocktail of pills I take each day, I find I’m in a dilemma, for the shaking has reduced considerably, yet my body feels incredibly stiff and painful. So to take the pills or not, that is the question, whether tis nobler to bear the slings and arrows of misfortune and put up with the side effects, only time will tell. 

My 11:30 a.m. buddy!

Sitting in a café with a fellow Parkinson’s sufferer, the scene must have appeared somewhat comic to onlookers, who probably didn’t understand why the two of us could not sit still, as we continuously wriggled and moved in our seats. My daughter put an alarm on my mobile phone reminding me to take my pills, and whilst chatting with this lady, the alarm started to chime. I excused myself whilst turning the alarm off and took my 11:30 a.m. pill. A few seconds later, the lady’s alarm also began to ring on her mobile phone, for the very same reason. We had to laugh at the irony of two women meeting for the first time, and finding that we share much in common due to Parkinson’s, including medications and even down to the time of day they should be taken, which have been helpfully programmed by family into our mobile phone’s alarm. So I now have an 11:30 a.m. buddy!

Time is of the essence

In the infinite vastness of time, we are here on earth for a mere fleeting moment, hence we should make each moment count. Like a footprint in the sands of time, one generation after another slips away, yet we can all leave a significant mark behind. Making a difference to society, having something of value to contribute, our actions and words can indeed make a difference, continuing on in others and consequently become everlasting. Time is of the essence, so make the most of your life.

Pretty Perfect for Parkinson's

I find, as I'm sure any woman with Parkinson's will agree, that putting on a necklace or bracelet with tiny clasps is tedious, frustrating and a near impossible feat. Having to constantly rely on others to help with the smallest of tasks, when coming across something that can be of help, no matter how small, I wanted to share it with you. I found recently a necklace that can also be worn as a bracelet by wrapping it several times around one's wrist, made of beads interspersed with little attractive magnets. No clasps required, no fiddling, the string of pretty colours just attaches by itself, making it easy to put on and wonderfully easy to remove. This magnetic jewellery comes in several different colours, and immediately I could see its versatility - particularly relevant when having little dexterity in ones fingers.

Larger Print

I visited a very dear lady today who lives in a Retirement Village, and I'm not quite sure who enjoys the weekly visits more, myself or the lady! We are never short of conversation, she is always good company with interesting stories to tell, and we have a good laugh together. However today she made me realise for the first time, that often it's difficult for those with poor eyesight to read small print, and I immediately asked if she'd had a problem reading my book of Parkinson's poems. I appreciated her honest answer, which was "yes", and so the next re-print of the book, I will endeavor to see if the print can be enlarged.

Doing all you can

If you have Parkinson's, regular checkups and taking suitable medications are a good foundation, but there are many other things you can do to improve or at least help your situation. Many people attend dance and movement classes tailor made especially for Parkinson's, which can be highly beneficial. Physiotherapy, whether done at your local health center, or in the comfort of your own home, helps with mobility, range of motion and stability. A well balanced healthy diet, without doubt also plays an important role. For me the most important component is one's attitude and mood. I believe remaining cheerful is paramount and staying positive no matter what, is number one on my list. Apart from physical health, mental health is of equal importance, and keeping busy, optimistic, staying social, laughing and accepting unwelcome changes whilst making the most out of your life is what I preach. I wish the “happy gene” I have been blessed with, were contagious, I would happily  infect everyone I come into contact with!!!

Medications galore!

Getting the right medication for any Parkinson's patient, is a matter of trial and error. One has to be very patient whilst trying different tablets, varying the dosage, attempting different intervals between medication, even deciding whether to take pills before or after meals. The possibilities are endless, but thank goodness today there are many good Parkinson's medications on the market, so at least if one isn't suitable, there's always something else to try. Whoever first said "patience is a virtue" must have had Parkinson's disease! I still wait in hope of a cure, like so many other millions of Parkinson’s sufferers around the world. Sorry to sound a little impatient but if you’re out there working on a cure, please do hurry!

Being Honest

Most days I manage the pain and discomfort of Gaucher and Parkinson's, but yesterday afternoon got a bit much even for me. Normally the cheeriest and stoic of patients, I took to my bed, but laying there tucked warmly in my quilt, felt little respite from the constant bone and muscle pain. Gaucher and Parkinson's normally take it in turns to drive me to distraction, but yesterday they decided in unison with full force to make their vile presence known. Anyone suffering chronic disease has good and bad days, but today is a new day, and I hope a better one.

Tea Time

There is a lot to be said for the rather dated, but much loved British custom of afternoon tea at 4 o’clock. It’s a comforting ritual that no matter where one lives in the world, this outdated tradition lives on. Seeing the table laid with china plates and teacups, a steaming pot of tea, accompanied by freshly baked scones, butter, homemade jam and deliciously rich clotted cream, with a touch of nostalgia takes me back to childhood. Give me an English cream tea anytime!

Being at a disadvantage

Sometimes being so upbeat and positive by nature can put me at a clear disadvantage. My cheery voice, smiling face and ability to eloquently express myself in writing, makes it very hard for others to understand how ill I really am. Fortunately the doctors who take care of me now realise my unusual disposition, whether it be from a British upbringing / culture or that I simply possess the illusive “happy gene”. Although I may occasionally baffle others, having the uncanny capability of remaining joyful no matter what life throws my way, I believe is a definite plus!

Smashing Time

Talking with a fellow PD sufferer yesterday, we discussed how many glasses and other objects we have both broken at home. I mentioned I had written about dropping drinking glasses in one of my recent Blog entries, and clearly tempting fate a little too far, or call it "Murphy's Law", whilst talking about this very subject, I promptly dropped and broke yet another glass whilst on the phone! Talk about perfect timing! Although we are now short one more glass in our diminishing odd collection, I had a smashing conversation and it was very nice catching up on news. Have a good weekend everyone and enjoy spending time with those you love.

Smiling at someone

I find that nine times out of ten, if you smile at someone, they'll smile back at you. If you come half way towards a person, they'll come the rest of the way to you. Staying open minded and willing to embrace life, makes each day much more interesting. I always say hello to everyone, whether it be a neighbour, the street cleaner, the doorman of a building, it doesn't matter who the person is, the mere fact of acknowledging someone, can make a difference. The other day at the end of our street, I saw a lady I know walking towards me, so I started to smile and wave. As I got closer, I could see she was not waving back, and her expression was rather puzzled. When we got up close, I realised I was wrong, and didn't know her at all. Apologising, saying I had mistaken her for someone else, she continued to stare at me, telling me I looked familiar. She then asked what my mother's name was. When I told her, she began to smile, for she knew my mother and could recognise the strong family resemblance. So although I'd been mistaken, if I had not smiled and waved at this lady, we would probably have walked straight past each other and missed an opportunity of meeting someone new and having a nice chat.

Ordering in a restaurant

When I was young, single, foot loose and fancy free, if out on a date I remember ordering carefully in a restaurant, so that I would remain poised and not have to struggle with something on my plate. Spaghetti being a dish I would avoid like the plague, for there is nothing less appealing than having ragout sauce on your chin. The same went for anything containing finely chopped spinach  or tiny poppy seeds that would get stuck in-between my teeth; a most unattractive look! Now all these years later, I find myself once again ordering very carefully in a restaurant but for very different reasons: Parkinson’s! Any meat on a bone or fish that requires careful and precise dissection, or peas that roll off your fork, are immediately dismissed when looking at a menu. Spaghetti is still off my list, but ravioli or gnocchi are easy and I can maintain my dignity at the table. At a function recently, sitting next to my husband, we were served steak with all the trimmings. My husband being in tune with my thoughts immediately cut his steak up into bite size pieces and then without a word or any fuss, we simply swopped plates. Voila, problem solved! 

Physiotherapy

Despite being in pain and feeling very unwell at times, keeping active is vitally important. It is sometimes a fine line between doing enough exercise to keep ones muscles and range of movement, and yet not overdoing things, causing pain or damage. Having Gaucher and Parkinson’s proves very difficult in getting the correct balance of exercise just right. I am fortunate to have a wonderful team of physiotherapists at our local health center, who are excellent. After learning a whole regime of exercises, I am able to continue doing these at home, which I conscientiously do twice a day. 

Finding solutions

Finding it difficult to swallow at times, whether it be food or my own saliva is one of the many unpleasant but common symptoms of Parkinson's. I have found that I want to eat things I wouldn't have normally eaten. I used to hate yoghurt, but now have it every morning for breakfast, and never used to eat ice cream, but now can't get enough of it. I guess the cool cold consistency that just slides down easily, makes these foods that I once shunned, much more appetising. A good tip: when having difficulty swallowing, try sucking a boiled sweet (hard candy) which I find helps considerably. I now keep a tin of boiled sweets at home and in the car. 

New Book

If you think I have been sitting back on my laurels, you are highly mistaken. Making the most out of every moment, I have made full use of the insomnia that Parkinson’s has so generously given me, turning me into a prolific  writer at all hours of the night or day. When you are still soundly asleep in your bed, I am sitting in the kitchen, writing like a there’s no tomorrow. I have just completed a mystery/adventure story for children ages 10-13, which is now available on Kindle through Amazon. The title is: “Slipping Through Time”. I hope you’ll take a look at my book, the cover, dedication and first couple of chapters of which can be viewed freely on Amazon. And now as the night has slipped through into morning, it truly is time to take a well-deserved break and make a pot of tea. So I will bid you farewell till tomorrow!

One size fits all

Something that has always puzzled me in clothing shops is the "one size fits all". How on earth did this phrase come about? What possessed the manufacturers to invent this impossible not to mention ridiculous expression. If you take a quick look along any busy street, I think one can safely say, that people generally come in all shapes and sizes, and different heights. I would very much like to find a "one size fits all" T-shirt that fits me (I'm all of 5'2") that also fits my friend (who is 5'9"). One size fits all? I don't think so!