Clear the decks.

Our house is beginning to look like a hospital rather than a regular home. There is often a traffic jam around the kitchen island. At a quick glance, one couldn’t fail to notice the presence of a wheelchair, a walker (Zimmer frame) a pair of crutches, and various pill boxes, i.v. stands, an assortment of medical apparel and emergency numbers along with prescriptions on the fridge door.

One might wonder why we have non-matching chairs in the lounge, and should you happen to spend an evening in our household, you’ll likely participate in playing Parkinson’s musical chairs. You’ve never heard of Parkinson’s musical chairs?  Well let me explain. Similar to the children’s party game, only there is no music and there,has to be at least one person present, who suffers from Parkinson’s disease. I spend most evenings moving from chair to chair, alas in vein, hoping to find a comfortable position.

We have tried to find an armchair that is comfortable for me and being short, it’s not easy finding a chair with small dimensions. We thought we’d found one, and bought it, but once at home, I found it wasn’t as comfortable as I had thought in the shop. We couldn’t return it, and so this was the first of a succession of chairs in our quest for the perfect chair. 

    

Sitting in a chair on display in a shop has likely been sat on by hundreds of customers and can feel completely different from the brand new one delivered straight from the manufacturer to your house wrapped in its protective plastic. After a further unsuccessful purchase of another chair, I began to realise, it’s not the chair that’s the problem, but yours truly. It’s as if I don’t feel comfortable in my body. So our quest for a comfortable chair has come to an end, and each evening I continue to move from chair to chair.                                

If you can’t swallow…

Although I am on the Duodopa pump, I still have some “off” times, but they are nowhere near as often or as bad as those before I was put on the Duodopa treatment. One of the first things I notice when I’m about to go “off” is that I can’t swallow. If you can’t swallow, you probably can’t eat! I was beginning to miss my evening meal altogether and wake the next morning with strong hunger pains. I was ravenous, and my weight began to drop. I knew I had to get some nourishment in me.

This is where soup comes to the rescue. The summer heat has not died down yet and it’s absurd I’m eating bowls of hot soup. This is yet another change in our lives, admittedly a small one. We have always eaten our main meal at night, but now I have to take Parkinson’s into account and am trying to have a substantial meal at lunch time and eat a lighter supper in the evening of soup or soft foods that are easy to swallow.

My friend’s husband always says jokingly “eat desert first”, but now often I have a scoop of vanilla ice-cream, and this cold treat slides down with little effort, and then I find I can manage to swallow thick hot soup. I endeavour to put as many different vegetables and pulses in the soup which is liquidized.

I may have to start drinking Ensure again, which contains all the vitamins and calories a person needs daily. Ensure comes in two flavours: vanilla or chocolate. I’ve also found that sucking on ice cubes helps when I can’t swallow anything else. Just like a car needs petrol to function, the human body is fueled by eating nourishing food.

Let's Dance!

I love to watch ballroom dancing, and as a child growing up in the 60’s many parents sent their children to ballroom dancing lessons. Perhaps this was to combat the change in society and music with the arrival of the Beatles and all that followed in the 60’s. It was an era of great change. But I digress, so back to Tchaikovsky, watching the dancing couples gracefully swirl around the dance floor, whether a waltz, the fox trot, the quick step, all held a charm and fascinated me.

Unfortunately, my husband doesn’t share my enthusiasm, claiming he has two left feet. Well, just between you and me, I’ve seen his feet which are perfectly formed and to make his dislike of dancing even more unfounded, his mother and her two brothers won several gold medals in ballroom dancing many years ago. So not only is his theory of having two left feet absurd, he more than likely has inherited the ability to dance and it’s in his DNA.

There is strong evidence that dancing is good for you, a form of enjoyable exercise, whilst interacting with other couples who are in the same situation - what could be better? There are specially designed ballroom dancing classes for those with Parkinson’s and I’m willing to give it a go.

I’m fighting this devil of a disease with everything I’ve got. Not wanting to sound negative, but realistically I’d be surprised if I’ll manage to participate in dance classes, but as they say, nothing ventured, nothing gained! So, throwing caution into the wind, I’m hoping my husband reads my blog this morning and gets this far from subtle hint!

Home safe and sound

My husband has returned safe and sound from his week away. Being my primary caregiver, the last two years have taken their toll. I want to say a huge THANK YOU to all those who took care of me during this long overdue break. Until you step into his shoes and get a clear hellish look at Parkinson’s disease up close, you cannot begin to imagine the raw cruelty, festering like an open wound, gradually that eats away both the sufferer and caregiver. A caregiver must have a break from the tyranny that rules endlessly, to recharge their internal batteries, from the ongoing emotional and physical demands, otherwise they will eventually burn out and not be able to function.

My family and friends rallied around and a rota system put in place ensuring that I wasn’t alone at any given time. The nights were particularly hard as I’m disconnected from the Duodopa pump, and this is when the painful muscle spasms start and can go on for hours. Who needs an expensive membership to a gym when you've got Parkinson's to give you a personal workout at home? If I’m really unlucky – these antics can continue the entire night and only when I’m totally exhausted and its time to reconnect to the pump at 05:00 do I find relief. Every patient is different, and experiences are not the same. It’s a matter of trial and error. Other patients on the Duodopa Pump may not suffer during the night as I do.

I am so grateful to have the caring support around me, and realise it may have been a shock for them to see what my husband and I have to endure, and how very important it was for him to have a break from it all.

Battle Weary

As Parkinson’s runs its course, I am forced into battle day and night. I’ve been fighting this relentless disease for 11 years, but the last three years have been particularly hard and are starting to take their toll on my husband and myself. In the early stages of Parkinson’s, I managed to cope, but as time passed, I was experiencing more “off” than “on” times and had no quality of life.

It was on 5^th November 2017, that I changed from oral medications to Duodopa which comes in a jell form administered by a pump directly into the small intestine. Despite Duodopa being a life changer – it is not a cure and doesn’t stop Parkinson’s from getting worse. However, it has given me better quality of life and has bought me time.

My caregiver is my devoted husband, and I cannot think of a harder job. Together we fight Parkinson’s but are becoming battle weary. My husband has taken a long overdue break and gone away for one week to re-charge his internal batteries from a physical and emotional sense. My daughter and her husband, along with family and friends together have me covered for the week, taking care of me and ensuring I’m not alone.

Yes, I miss him terribly, but I know how much he needs a rest and to take time out from our incredibly difficult situation. I want to thank all those who made this possible – we are extremely grateful. This break also allows him to attend the wedding of our dear friend’s daughter. I’m sorry I couldn’t join in the celebrations, but I’ll be there in spirit and wish the young couple congratulations.

As Time Goes By

They say a watched kettle never boils. The same could be said when unable to fall asleep in bed at night. I keep glancing at the clock and watch the minutes slowly pass, one by one. I can hear the loud ticking of our carriage clock in the lounge that chimes on the hour, and once every half an hour.

How I wish I had a little of Tinkerbell’s fairy dust, for I’d sprinkle some over me, think happy thoughts and fly out into the night. I’m not too sure where Neverland is, but there are no ticking clocks and time stands still, Peter Pan and the lost boys have escaped the cruel reality of this world. Surely this has to be one place that Parkinson’s does not exist.

The stronger I fight Parkinson’s, the stronger this lousy disease seems to retaliate. I’m having a daily tug of war with an unworthy opponent.

Parkinson’s Waits for nightfall.

Most are fortunate to go to bed at night, snuggle under the covers and gently drift off to sleep. I used to take a good night’s sleep for granted, but not anymore! We’re lucky if we get 2 or 3 consecutive hours of sleep. You wouldn’t believe what goes on in our bedroom at night! No, I’m not talking about that. I’m talking about the painful dystonia which haunts my nights. Through trial and error, I’ve found the best position for me, is to be flat on my back with my arms straight down by my sides, or laid across my chest, resembling an Egyptian mummy. I don’t have many options since I can’t lay on my stomach due to the PEG tube that connects me to the Duodopa pump. This tube disturbingly dangles freely out of a small hole approximately 8cm above my navel. For some reason I can’t breathe if sleeping on my right side, nor can I sleep on my left side as this puts painful pressure on the long piece of tube in my small intestines. Are you getting the picture? I dread getting into bed at night for it’s not comfortable and certainly not restful.

I am detached from the pump at 10pm, so this is when the fun often starts. I say “fun”, but be rest assured, Parkinson night time antics are far from fun. My poor sleep deprived husband often ends up massaging the cramped muscles, which can be anywhere from curling toes, thighs, calves, to shoulders and neck, or if I’m really lucky, they can all cramp up at the same time!

My right arm often shoots up into the air for no apparent reason, as if possessed or got a mind of its own. It’s incredibly painful as my arm violently pulls my whole body and sometimes my shoulder is black and blue from the amount of deep muscle massage needed to get my arm down.

My breathing becomes labored and I can’t swallow, which is very unpleasant not to mention, a little scary. If my torso goes into spasm, it feels like a Boa Constrictor has wrapped its body around my chest and unable to massage the muscles surrounding the heart and lungs, the only thing I can do is to get out of bed, stand up and do some of my exercises. I go up on my toes, walking on the spot, stretching and moving my body, generally trying to distract and confuse the hell out of Parkinson’s. This agony can go on for half an hour, two hours or more.

When the muscles finally calm down and Parkinson’s has had its fill of torturing me for the night, I slump back into bed exhausted. Dawn is approaching and a new day is here, and so i get to battle Parkinson's again with all its unpredictable tricks.

Hold Still

I was having an X-Ray and the technician said to me “Hold still.” I did my best to stop wriggling and shaking, but it wasn’t good enough to produce a clear X-Ray. The technician had to start again and re-positioned me, repeating loudly in case I was hard of hearing (which I am not), “Hold still” while he quickly disappeared behind the protective booth. Try as I might, I could not stop moving. The technician, rather irritated, repeated the performance once more.

Third time lucky, I thought to myself, but I moved just as he was taking the X-ray. By now, he was running out of patience and muttering under his breath, said, “What’s wrong with this idiot?” “I am not an idiot, I have Parkinson’s!” I replied indignantly, furious with his lack of empathy. If anyone was an idiot, it was the technician, but of course, my good manners refrained me from saying this out loud. He stopped in his tracks and stood still. Slowly turning around, he looked me in the face for the first time since I had entered the room and apologized.

He had seen ‘Gaucher disease’ and the instructions of what needed to be X-rayed on the form I’d given him. It was written quite clearly a little further down the page, that I also suffer from Parkinson’s, but he had not bothered to read everything. If he’d had the decency to look at me, he would have realised I have Parkinson’s.

You’ll be pleased to know that for the fourth X-Ray, I held my breath and concentrated hard on not moving. Success at last and I was able to leave the X-Ray department.

Years ago, one would have to wait a considerable time for the X-Ray, which would be inside a large brown envelope. Today it’s much easier, as X-Rays along with a written report, go straight into the hospital’s computer system. By the time I got back upstairs to the ward, the doctor had already seen my X-Ray and read the report. How times have changed.

Never give up hope

Each day I wake up to hear the birds chirping away in the garden, announcing the night is over and it’s a new day. One of our neighbours parks his truck in the street, and the familiar sound of the engine is very distinct. Like clockwork, every morning I hear him start up his truck and off to work he goes. You could set your watch by his departure. Gradually the street comes alive as families send their children off to school and their parents leave for work. Everyone is so busy, they barely have time to breathe.

Whilst this hub of activity goes on around me, my life is slowing down, and I find myself moving from the slow lane onto the hard shoulder, and feel like a spectator of sorts, watching life speed by in the fast lane. There are so many things I cannot do anymore, therefore I try to concentrate on the things I can do, but the list is getting worryingly shorter as time passes by. Living with a degenerative disease, nothing stays the same for very long.

Living with Parkinson’s disease is like living with a ruthless thief, who stealthily steals a little more of my life each day. It doesn’t help to grieve for the loss but accepting and coming to terms with my ever-changing situation is not easy. I try to keep positive, and having support from family and friends, well let’s just say, I couldn’t get by without them, especially my amazing husband who is also my caregiver.

Before I was diagnosed with Parkinson’s, I must admit, I knew very little about this and wish with all my heart that I was still blissfully ignorant of this rotten disease. We all have hopes and dreams for the future, but I never envisaged my life turning out this way. I guess no one does. All I can do, is make the best of a bad situation, stay cheerful, maintain a sense of humour and never give up hope.

Added complications

You wouldn’t eat a roast beef sandwich smothered with hot custard, or cheese cake topped with tomato ketchup; they simply don’t go together. Having Gaucher disease with Parkinson’s is much the same – they are a terrible combination. If you are wondering where I was last Friday, I was flat on my back once again and put out of action having a herniated disk. The last time this happened was only about a month ago.  

The sharp nerve pain from my lower back that radiated down my leg became excruciating as Parkinson’s did its best to exacerbate the situation. Dystonia was pulling me this way and that and I writhed in agony – not a pretty sight I can assure you. Apart from painkillers there’s not much one can do, other than attempt to lay still. Well Parkinson’s was not about to cooperate any time soon. I needed this added complication like a hole in the head!

Problems with swallowing and speech

It has been 11 years since I was diagnosed with Parkinson’s, and like most patients over the years I have tried a varied cocktail of pills, trying to find the right balance and effective treatment possible. Pills come in every colour imaginable and vary in size and shape.

What mystifies me, is how some medications, that are expressly for Parkinson’s disease are sometimes quite large making them difficult to swallow, causing panic. Why have pharmaceutical companies not thought of this problem? With today’s technology, how difficult can it be to make pills small, instead of producing some large enough to make one wonder if they are intended to be taken orally or put elsewhere?

Apart from size, surely it's possible to coat all pills in a hard candy like shell, instead of the powdery outer coating that can get stuck if not swallowed quickly, sticking to the roof of one’s mouth or worse still at the back of the throat, disintegrating in one’s mouth instead of being swallowed.

For many Parkinson’s patients, swallowing can become problematic. I am fortunate enough to have weekly sessions with a highly professional charming doctor who specializes in swallowing and speech therapy. I try to do the exercises several times a day, as part of my daily regime.

It’s been a busy week and am looking forward to the weekend. Wishing you all good health – until next Friday, it’s over and out from me!

Are You on the Duodopa Pump?

I spent Tuesday in hospital being checked out by a Gastro Surgeon, as I’ve been in a lot of pain in the area where the hole and pipe are attached to the Duodopa pump. If you are on this treatment and are experiencing constant pains in your tummy and a little light bleeding, it would be great to hear from you. Sharing experiences with other patients is priceless.

Another week has flown by, and my back is much better than it was. Of late, my voice sounds gravelly and I often have to repeat myself several times till I’m heard. It’s as if someone has turned my volume down. I also have great difficulty in swallowing (particularly at night when I’ve been disconnected from the pump). I have sessions with a doctor who specializes in speech and swallowing difficulties, and I have various exercises that I do several times a day.

I would just like to say “Happy birthday” to my cousin. Have a great day and hope you have fun celebrating today.

There’s a cheesecake sitting in our fridge whispering my name. I love cheesecake but rarely have it, as I’m the only one in the house who likes it. Along with millions around the world, tomorrow our eyes will be glued to the television seeing the Royal Wedding. There is something about all the pomp and ceremony that captivates the world.

So whatever you are doing this weekend, whether celebrating your birthday, watching a Royal wedding, eating cheesecake or seeing the Cup Final between Chelsea and Manchester United. “Come on you Blues!” (just in case you wondered which team we support), have an enjoyable time surrounded by those you love.

Thankful for small mercies

Thank goodness there has been a vast improvement from this time last week when I was suffering terrible pains from a herniated disk in my lower back. I was rendered immobile for several days, unable to stand, walk or sit down, my only option was to lay down in bed. I am now back on my feet, taking things nice and easy.

I’m afraid that’s all for this week. Have a good weekend everyone and I’ll catch up with you next Friday.

Just when you think things are improving!

How’s your week been? Hopefully better than mine! When suffering from Parkinson’s disease you learn to expect the unexpected, for life can throw a curveball and this latest episode is one I could have well done without. As if Gaucher disease and Parkinson isn’t enough to contend with, I’ve been in bed since Sunday with a herniated disk in my lower back causing terrible pain. Recommended to lay still, is almost impossible if you have Parkinson’s. I can’t stand, sit or walk at the moment, so writing my blog this week is taking a great deal of effort.

Fortunately, my husband is quite a dab hand in the kitchen, but there are times when “takeaway” is the quickest and easiest solution for the evening meal.

What did we do before there was “takeaway”? When I was young, growing up in England, the only “takeaway” was the quintessential fish and chips. Traditionally, fish and chips were wrapped in yesterday’s newspaper for insulation and to absorb the grease, with an inner layer of white paper for hygiene. Sadly, fish and chips are no longer served in newspaper due to “health & safety” regulations. The cod, haddock, plaice or hake was deep fried in a golden delicious batter, served with thick unevenly cut chips topped off with a good shake of vinegar and salt.

Recently, a fish and chip shop opened nearby, where they fry fish to order so everything is fresh, and a tasty tartar sauce which they make themselves, but no yesterday’s newspaper in sight. In my present condition, I think you can guess what we’re having for dinner tonight!

There’s always something new to learn.

I had a pretty rough time last week, which prevented me from writing my blog.

The cold winter weather, in particular the rainy season has a huge effect on my bones, especially the joints. The pains are made worse by Parkinson’s dyskinesia and dystonia which constantly shake my delicate painful bones. In these circumstances, I rely on morphine tablets, relieving the pain so it becomes bearable.

Constipation is a very common problem when suffering from Parkinson’s disease and I was told when Duodopa is administered by a pump, it is important not to be constipated otherwise the medication won’t work properly. What I did not realise was that having diarrhea is just as bad, for the Duodopa is literally flushed straight out of the system.

This past week has been yet another learning curve, discovering this information the hard way, it was as if the Duodopa had just stopped working and I was thrown into a permanent “off” state. I have been on the Duodopa pump for six months now, but clearly there are things I still don’t know.

I wish you all a relaxing good weekend, but most of all, good health.

The Pros & Cons of Duodopa

Like everything in life, there are good things versus bad, pros and cons and as many a Parkinson’s patient will tell you, there are “on” and “off” times that get annoyingly worse as the disease progresses.

For example, one of Duodopa pluses, is being able to eat at whatever time I want. I no longer have countless alarms going off on my mobile phone, reminding me to take my pills, and waiting approximately 45 minutes between taking a Dopicar tablet and eating (in particular protein such as meat, chicken or cheese). All my family and friends were very understanding and accommodated my rigid eating times which allowed me to get the optimum result from the daily regime of Parkinson’s medications.

It’s one thing to control meal times in one’s own house, but quite another when you have been invited to someone’s home or are eating at a restaurant. It would be the height of rudeness to hurry one’s host with serving on time, and often in the past I have had to forgo eating as I was more concerned that my pills were given the best possible chance of working. It can even get difficult in a restaurant or cafe, and if the service is slow, I can miss the window of opportunity to eat a healthy meal containing protein.

I am often teased in our family about how my stomach can tell the time. Perhaps I swallowed a clock when I was young?! But I doubt this very much, and think the explanation is more to do with DNA, as my brothers and a cousin of mine, all have this internal clock and need to eat at regular times.

Duodopa is not a pill, and therefore administered in a completely different manner, bypassing the stomach altogether.

A Family Wedding

Naturally we’ve been looking at the photos and watching the video of the wedding again and again. I don’t think I’ll ever tire of looking at them and re-living the most wonderful and special event of our lives. I expect every parent feels this way.

It’s a bit like when you are pregnant for the first time. Well-meaning people try and explain that your life will never be the same again, and although you listen attentively and nod your head in agreement, thinking “of course things will be different” only when that little bundle of joy arrives, with no instruction manual, do we finally understand the enormity of what people have been trying in vain to impart.

There are certain events in life that must be experienced personally, and no amount of preparation will suffice. Divorce, loss and ill health being the major ones that first come to mind. If anyone thinks they can imagine what it’s like to live with two chronic diseases, then think again. Unless standing in my shoes, you can’t possibly comprehend how every facet of my life, and that of my darling husband has been changed beyond all recognition. 

The pump and the Duodopa medication is most certainly not a cure, and is not trouble free, but it’s a life changer and arriving at the 11th hour, was not a moment too soon, has literally bought me time and unquestionably improved my quality of life. 

However, Parkinson’s is merciless and devout in its cruelty, quietly and patiently waiting in the wings, for just the right moment when it will attempt to reclaim center stage. So, until that time, I shall endeavour to live my life as always, making the most out of every day, and embracing fully, all that I hold dear.

Duodopa Pump

After my three nights spent in hospital, I was thrilled to be considered a good candidate for “Duodopa” - a Parkinson’s treatment that I had only recently become aware of. During my short hospital stay, the trial run proved how a patient can benefit, substantially improving one’s quality of life.

Three weeks later, I returned to the hospital and had a permanent “Peg line” surgically inserted. The Hospital were very good, and the surgeon told us the operation went well and considered minor surgery, I was allowed home the same day.

The following day, needless to say I felt pretty rough, but this was to be expected.  A nurse came to our house to show my husband how to change the dressing and explained how to look after the Peg Line.

So, I am now sporting a “Peg Line” which is attached to a pump, who has become my new best friend! It never leaves my side, and we go everywhere together. I was given several different vests, pouches and bags so that I have a variety of options. It does restrict one’s clothing a little. Although the pump weighs only half a kilo, you’d be surprised how heavy it becomes when you’ve been wearing it since 05:00 and only at 22:00 when I go to bed at night, am I detached from the pump.

I hope the manufacturers are working on a lighter weight pump. There is an amount of maintenance involved with flushing through the tubes at night before detaching one ‘self from the pump. Once a week, instead of using regular tap water, believe it or not, we were advised using regular Coco cola to flush through the tubes.

The pump runs on two regular AA batteries, so we had to get a stock of these in, as the batteries last exactly one week. Also 20 ml syringes are required for flushing the tubes. 
Whilst in hospital for the three nights, my husband was taught how to use the pump, and once at home I became comfortable with working it. Although I have to admit, at 05:00, I am not able to manage by myself.

Without the Duodopa and its pump, I seriously doubt I would have made it to my daughter’s wedding. Duodopa enabled me to walk down the aisle with my husband and daughter, who was a vision of beauty in an elegant long white bridal gown. The smiles of pure joy on the newlywed’s faces was simply precious as they danced the night away. My handsome husband dressed in his new suit, was smiling from ear to ear the entire evening.

Duodopa Pump Brings Hope!

Duodopa treatment is not necessarily suitable for every Parkinson’s patient. A full examination and consultation must be done to ascertain if you are a candidate for Duodopa.

I’ve found not all hospitals have a “Movement Disorder Clinic” and not all clinics offer “Duodopa”, a relatively new medication which is a therapy for patients who are in an advanced stage of Parkinson's disease, with severe motor fluctuations (on and off), when conventional oral therapy is no longer effective. The portable pump delivers Levodopa – carbidopa in the form of an intestinal gel, through a small tube that connects directly into the small intestine. The medication is given throughout the day, which allows a constant exact amount of medication to be administered and thereby decreasing the Parkinson's symptoms.

Before I underwent surgery to put in place a peg line, I was invited for a three-night stay in the Neurological ward, where I had a trial run to ensure I was a good candidate. The Duodopa nurse gave me instructions for my trial run with the Duodopa pump and told me to bring with good walking shoes and my walker!!!! Walking shoes and my walker? The nurse certainly sounded confident. This had to be a good sign, right?

Sure enough, once attached to the Duodopa Pump there was no stopping me. I grabbed my walker and husband, and we went for a walk. We left the hospital grounds and a little further along the street there was a small shopping mall. We found an ice-cream shop and decided to stop for some mandatory ice-cream. After sitting there about twenty minutes, we decided to make our way back. I very cautiously got up, wondering if I’d be able to walk. It was an undisputable YES. I had walked further that one day than I had in months.

Pay It Forward

I have never been good at shopping for clothes, so this was going to be a real challenge. I needed help from someone who is good at making impossible things happen. My sister-in-law decided to start with a reconnaissance mission to find the shop with the largest selection of possible dresses to save me the leg work. The following day, she was having coffee with a good friend and the forthcoming wedding along with my “Mission Impossible” of finding a suitable dress that would not self-destruct in 15 seconds, came up in conversation!
     

It so happened her friend had a dress hanging in her closet that likely she would never wear again. A year ago, as mother of the groom, she had bought a beautiful dress for her son’s wedding. Delighted to be of help, she happily gave me the dress. Despite the two of us being different shapes and sizes, not to mention height, the dress magically fitted me surprisingly well, and just needed shortening and a couple of minor alterations. The colour, royal blue (my favorite colour) the style flattering and the fabric very forgiving should I spill anything.

When strange things happen out of the blue, things you cannot explain; is the universe trying to tell you something or do you try to rationalize it as simply a string of weird coincidences? About twenty years ago I made a shawl from royal blue chiffon, and painstakingly sewn sequins and bugle beads (also in royal blue) in a swirling pattern each end of the shawl. I had given this to a dear friend, who had kept it wrapped in tissue paper in pristine condition all these years, only to find herself giving it back to me as it went perfectly with the dress.

It’s amazing the transformation that takes place when a professional does your hair and makeup. There appeared to be several “Fairy Godmothers” hard at work ensuring this Cinderella would go to the ball. Looking at my reflection in the mirror, I could hardly believe my eyes. I have never felt so glamorous in my life. A BIG THANK YOU to all those who made this happen.

                                                      

At a wedding, the spotlight, as it should be, is undoubtedly on the bride, and it is her special day to shine. Both mothers of the bride and groom are expected to be dressed up to the nines, not to outshine the bride, but subtle enough, setting them apart from the other guests. This ultimately ends in women buying dresses special enough to meet the criteria which unfortunately means she’ll more than likely never wear it again. Just imagine how many of these beautiful gowns are hanging in wardrobes, sadly never to be worn again.

I suddenly had an epiphany, an idea that could turn into a great venture, along the premise of the film “Pay it Forward”. After scouring the Internet, it didn’t take me long to find I wasn’t the only person to come up with the same bright idea. There are in fact many out there, selling, swapping and donating their special dresses they got to wear but once. Whenever I have a good idea, it always seems that someone else has already had the same thought!

My Goal Kept Me Going

I could easily have given up. It would have taken very little to throw in the towel and call it a day. But I didn’t – I’m a fighter and I wasn’t about to allow Parkinson’s to steal me away from my husband and the pleasure of being at our daughter’s wedding. We have one child and I was determined to walk with my husband by her side down the aisle. The wedding had been planned, invitations sent, hall and catering booked, and as the date drew closer, making it through each day and night was getting harder and harder. There were three months till the big day, and although this sounds like a short time, in my condition, it felt like an eternity. It took all my energy and strength as I struggled and fought constantly staying totally focused on my goal.

Being “mother of the bride” it was obvious I would need a new dress, and not just any dress. It would have to be elegant enough befitting the mother of the bride. How on earth in such poor shape was I going to manage dress shopping, going from shop to shop, expending huge amounts of precious energy undressing and trying on dresses? Just the thought of searching for the perfect dress threw me into a spin. This is where men most definitely have the upper hand. Let’s face it, a suit is a suit, no matter what colour, or fabric. I think you’d be hard pushed to find someone saying, “Haven’t we seen him wearing that suit before?”

I have to say, my husband did look very handsome on the day and I humbly confess, he is a far better shopper than me, and knows exactly what he wants. He went shopping and in just one hour had purchased a lovely new grey suit, a tie and shoes. I am envious of his ability to effortlessly shop for clothes.

My darling daughter had clearly known for some time what she wanted, has excellent judgement and a very good eye for spotting what will suit her. Like most mothers, I had dreamt one day she and I would go together to choose her wedding gown, but I was seriously ill and much to my disappointment, I was unable to join her. On the big day she got ready at our house in her old bedroom and as she serenely glided down the stairs, my eyes welled up with tears of pride at the little girl who had blossomed into this amazing woman who stood before me. Looking beautiful in a full length, white, elegant dress, she was about to begin a new chapter in her life.

My Greatest Fear

 We all have our strengths and weaknesses, foibles and fears. I don’t like being in confined spaces such as an MRI machine, and you’d never catch me paragliding or bungee jumping. Snakes and slugs come high up on my list, but without doubt my greatest fear of all is being unable to communicate.

Thanks to Parkinson’s I was hospitalised several times during 2017. Trapped in a body that no longer responds to Parkinson medication, unable to swallow or speak, no doctor or nurse could possibly ascertain if my cognitive skills remained intact. Add into the equation that any anxiety or stress greatly exacerbate the disease – and hey presto, my greatest fear of not being able to communicate in any form was realised.

As the doctors made their morning rounds, I lay there in my hospital bed like some distorted forsaken wax statue from the Chamber of Horrors at Madame Tussauds. I couldn’t move, and my unblinking eyes were transfixed on a ceiling tile above my head.
  

The morning doctor’s rounds were not at the same time each day and not knowing when they would appear made it very difficult for my husband to be there with me. Over the years, my husband has taken an extraordinary amount of time off work to care for me. Due to the severity of the “off” I was experiencing, I couldn’t even use my mobile phone to call a family member or friend to step in as an advocate to speak on my behalf.

Later in the day when I was “on”, I wrote down all the questions I had wanted to ask the doctor, along with pertinent details he didn’t know. Being a girl guide at heart, with just a touch of OCD for good measure, I am very methodical and super organized. I do my best to be prepared for every eventuality. The following morning, I was again “off” as the doctors made their rounds, but I managed to avert my eyes away from the captivating ceiling tile and locked eyes with the doctors’ and he saw my notepad clutched tightly in my grasp. He read my questions and comments out loud to his entourage. Through this limited form of communication, at least it was now established that I had all my marbles!

If you ever find yourself in the situation of being unable to communicate, make sure you have an advocate - someone to speak on your behalf who has your best interests at heart. I can’t stress enough how important this is.

Angels Who Make House Calls

I was not living but surviving from one moment to the next. There is only so much that the human body can endure, and I felt I was fast reaching a point where I could take no more. The Social Worker assigned to me by our Health Fund was visibly shocked at my deterioration, and so it was in my darkest hour, she sent angels to ease my pain. Don’t worry, I wasn’t hallucinating and most certainly haven’t lost my marbles! These angels were mere mortals of course, just like you and me and bore no celestial wings. They did however offer a heaven-sent service for patients in special circumstances, chronically ill people who are better treated at home rather than being hospitalised or sent to a hospice.

I will never forget the Social Worker who contacted our family doctor recommending I receive pain relief at home immediately through this organization. Her compassion, understanding and ability to quickly put things into action literally saved me, and within hours a highly experienced professional team, consisting of a doctor, a nurse and their own social worker arrived at our house. With their expertise, they administered to my needs giving me a cocktail of narcotic drugs that after weeks of suffering consistent unbearable pain, I eventually found some relief.

This was one of those moments in life that I’ll always remember. I am so grateful to our Social Worker for thinking of contacting them. So, the pain was now under control, but this was no cure for Parkinson’s and we hadn’t really solved anything. We had simply put a plaster on a gaping wound which bought us time, while the disease continued out of control on its speeding journey.

When pushed to the very limits, the human spirit is stronger and more powerful than we realise. My secret weapon was having something important to look forward to. What could be more special, joyous and life affirming, than a wedding? And so, it was the deep unconditional love of my husband, extraordinary closeness from my best friend and the forthcoming wedding of our darling daughter to a young man we have grown very fond of, that gave me reason to live and put up the fight of my life. 

Blogging Again!

I stopped blogging for the simple reason, I was deteriorating at such an alarming speed, I thought who in their right mind would want to read this? Who would want to know what I was going through – not really living, but hanging on by my fingernails, surviving each painful long day and suffering hellish nights I thought would never end. My body no longer responded to my medications and Parkinson’s had turned into an unpredictable demon, sapping my energy and causing pain that ravished my body. Doctors and nurses had seen all-consuming pain and suffering in Cancer patients and other chronic disorders but had never treated a woman in her fifties with Parkinson’s and Gaucher in such a terrible advanced state. If there were such a thing as a ‘pain scale’, my reading would have been way off the charts.

I used to be a very fast typist, but now use one finger so it takes forever to type even the shortest of blogs. So please be patient as I recount the events that took place. What I will be writing is without doubt disturbing, and may be hard for you to read, but I urge you to read on, for there is a lot of information, should you need it that could prove helpful. I would like to remind you that I am not a doctor or have any medical training. I am merely a patient sharing my experiences and story with you.

I never really questioned anyone what the difference was between a 'Neurologist'  and a 'Neurological Movement Disorder Specialist'. The term "movement disorders" refers to a group of nervous system (neurological) conditions that cause abnormal increased movements, which may be voluntary or involuntary. A movement disorder specialist is a neurologist who has received additional training in Parkinson's disease (PD) and other movement disorders including Essential tremor  (ET), dystonia, tics and tremors. 

I had been going for 11 years to the same neurologist, who is highly regarded. It had never occurred to me that perhaps I should get a second opinion from a 'Neurological Movement Disorder Specialist'. You may be thinking “Well I know that” and in hindsight, I don’t know why this option was never explored. Foolish as I may now seem, to have not inquired before, all I can say is “better late than never”. So, if you too, have not been seen by a Neurological Movement Disorder Specialist, it may be worth your while checking this out. You have nothing to lose and everything to gain.

My father who was a carrier of Gaucher disease, had PD. I also had a brother, who like myself, suffered from Gaucher disease and PD who died a few years ago. From the time of diagnosis, my father and brother went downhill and passed away at an alarming speed, not only was this a shock to the family, but also the doctors. Although my family medical history did not bode well, I strongly believed my case would be different. My father and brother were pessimistic by nature, seeing the glass half empty, where as I am a very different character, always positive who sees the cup half full. I strongly believe that one’s outlook on life can have a remarkable effect on the severity and speed of progression.

My husband has made coffee and beckoning me to the table, so I'll leave you for now and wish you good health and an enjoyable weekend.

Welcome to my blog.

Whether this is your first time visiting my blog, or you have followed me closely over the years, wondering if I had slipped off the face of this earth; welcome to my blog! So, what did happen to Elaine Benton? Where have I been all this time, and “what’s the story?”, I hear you ask. It isn’t a pleasant tale, and I was hesitant to tell it at first, but as it now has a happy ending and may give others hope, I felt compelled to share with you my experiences and knowledge gained along the way.

As we all know, each Parkinson’s patient is different – there are no two cases alike. However, sharing information with one another is vital, and it is for this reason, I decided to blog again. This may take a while, as my typing is now extremely slow. I’m known for my straight talk and I never sugar coat what I have to impart. So, grab a cup of coffee, make yourself comfortable and I shall endeavour to bring you up to speed.

When I first started blogging, I found there was so much to learn, I was not short of content and had much to say. In the early stages of Parkinson’s, it was easy to see the funny side of things, and although I always wrote about relevant topics, some of which were quite serious, there was always an undertone of my sarcastic dark British humour.

The last year has been a rough journey and there were times that i didn't think I'd make it, but I'm one tough cookie and I'm still here. Friends came to stay and we had the most wonderful time, but there's always that point at which guests have to leave,and I hate saying goodbye, so instead I say see you soon.