When you can’t re-charge your batteries

How can I explain to those who do not suffer from Parkinson’s about the increased difficulties at simply getting together for a social visit. As the disease progresses, making any social engagement is far from easy, never knowing how I’m going to be on the day. This literally throws one’s social life out the window. Experiencing “off” times where essentially the Parkinson’s medications cease to work for a period, renders one unable to function, which disrupts life to an unimaginable extent.

It takes mammoth proportions of effort, both physically and mentally to accomplish anything whilst in an “off” state, and therefore important to listen to one’s body and rest when these times occur. It’s not a case of being a defeatist and giving up, for trying to fight through, no matter how determined, is counter-productive and if anything exacerbates the situation. It’s no good convincingly saying “I’ll take it easy tomorrow and make up for not resting today” as unlike a re-chargeable battery, any lost energy can never be re-gained or topped up. It’s as if you are irreversibly depleting internal energy levels.

The frustration experienced from “off” periods is off the scale and the lack of understanding from those around, can be soul destroying. 

Too Little Medication

Too much medication can produce some nasty side effects, but not enough medication and the results can be equally disturbing. I’ve never been one to take unnecessary medication, and generally veer on the side of trying to take as little as possible. However there are times when there is no choice and I have to accept the fact, that as Parkinson’s disease progresses, medications, dosage and timings have to be altered accordingly.

I can be pretty obstinate at times and was determined not to increase medications,  trying all other methods to improve my situation. My quality of life had reached an all-time low and so I finally relented. My wonderful patient neurologist waited for me to recognise and come around to the realisation that I needed to take more medication.

I eventually succumbed and despite not being happy that I require so many pills each day, I could quickly feel an improvement from the new regime. If like me you are reticent to take more medication, don’t be stubborn, for anything that increases quality of life – has to be worth a try.

As Parkinson’s disease progresses, and for every person, it is a slightly different route for no two patients are the same, one’s world constantly changes. Nothing remains the same and I find myself making changes and adapting to new situations as they arise. My family and friends must think I’ve dropped off the face of the earth, for what might be perceived as lack of thought, unsocial behaviour or lack of manners on my part, is merely the result of living with chronic disease. I apologise for my tardiness and hope they realise my lack of contact bears no relevance to my feelings towards them.

And so ends another week. As I sit here with my morning coffee, looking out of the window at the rain gently washing away any traces of dust from the garden, I wish you all a good weekend. 

Screams in the Night

Disturbed nights are a common occurrence in this household, for I suffer bouts of insomnia. Unintentionally thanks to me, my dear husband’s sleep is therefore also disrupted. Parkinson’s has a lot to answer for, but sometimes, even I have to place the blame elsewhere.

Finding it hard to turn over in bed, to swallow even my own saliva, trying to block out the constant nagging pain, being awoken two or three times a night by cold and hot sweats, frequent nightly bathroom visits, along with the insomnia that makes one repeatedly glance at the clock as the hours drag by; is it any wonder that I hate the nights? With all this going on, who on earth can sleep?

The other night, I slid out of bed as quiet as I could, hoping not to wake up my sleeping husband, and miraculously managed to get to the bathroom without making a noise. Out of the corner of my eye, I suddenly spied a cockroach scuttling along the far wall. Without a second thought I smacked my slipper down, and assumed it was dead, as it lay on its back, legs in the air frozen. However, it must have been merely stunned, for as I picked the cockroach up by one of its legs, wanting to dispose of it, I found it was still very much alive. It began to struggle for all it was worth in-between my fingers. Without thinking, my natural instinct took over and forgetting momentarily, I screamed as I dropped the ugly uninvited guest down the toilet, quickly flushing it out of sight.

Convinced my scream was enough to wake the dead, I was astonished to climb back into bed and hear the steady deep even breathing of my husband as he lay motionless. In the morning, I asked if he’d heard me scream in the middle of the night, to which he replied, “No, did you have a nightmare?” Flabbergasted I said “Isn’t finding a cockroach always a nightmare?”

On-Line Shopping to the Rescue

What have I been up to this week? Well grocery shopping is one of the many things I can no longer do. The fridge looked pitifully empty and I needed to find a solution to this problem. My husband has enough on his shoulders taking care of me, and certainly doesn’t need to add groceries to his very long list of things to do. We decided to try ‘On-line shopping’.

I had heard that ‘everybody’ is doing it, but upon trying to find someone who had personal experience in On-Line grocery shopping, I couldn’t find anyone - not a single person! So who are the ‘everybodies’? Unable to find anyone, I decided that I would just give it a go. Worst case scenario, if it wasn’t successful – we’d shelve the idea and find another solution. Once I had initially signed in, it took some time to find the food products I wanted to order, but I soon got the hang of it, as each product was accompanied by a picture, making it child’s play.

Placing an order, I sat the next day eagerly awaiting the delivery. The supermarket van arrived well within the allotted time they had predicted and I was impressed with how the groceries were packed in a well organised way. The cleaning products, as they should be, were in a separate box, and the milk products were all in another box with a large freezer pack on top to keep them cold. So one satisfied customer here, and since becoming an ‘everybody’ – I have since been sharing this information.

When circumstances change, finding a solution to a problem isn’t always as simple as on-line grocery shopping – I only wish it were! My health continues to fluctuate and of late I’ve done little writing. I somehow managed to write a piece for TheHuffington Post this week, so please take a minute or two and read about a topic that almost everyone can relate to.

Loss of self-confidence

Whether this is your first time to my blog or if you are a regular reader, thank you for visiting and welcome to my world! Pull up and chair and make yourself comfortable. No doubt you are either a fellow sufferer, a caregiver or perhaps you are simply interested to learn the realities about living with Gaucher and Parkinson’s disease. I have been writing for some years now, and as time has passed, I’m in a very different situation today than when I began writing this blog in 2011.

As Parkinson’s slowly strips me of abilities that were once second nature, like a macabre strange rendition of “the dance of the seven veils”, as each one drops, a little more self-esteem vanishes into thin air. Many fellow sufferers, with more time on their hands, take delight in resuming old activities or finding new hobbies such as painting, writing or dancing which may not have presented themselves had Parkinson’s not been the cause of life changing circumstances. I think it’s fair to say that despite enjoying new hobbies and coming into contact with some pretty amazing people, which is one of the few positive things that occur as a result of living with chronic health issues, I can assure you, overall the disease takes far more than it gives.

There’s sadly not one aspect of my life that is not affected in some way and consequently, the lives of my husband and daughter are equally marked. Despite everything, we still retain a sense of humour which helps pull us through each day – for this is one thing Parkinson’s cannot steal! When you have a strong fighting spirit and a supportive network made up of caring family and friends – it really makes a huge difference.

This week I gave a talk to a group of thirty medical students about living with Gaucher and Parkinson’s disease. I hope apart from hearing a patient’s perspective about living with these two diseases, that they took with them my message of hope, and saw first-hand how one’s attitude can make all the difference in coping with chronic ill health. A positive outlook, sense of humour and good support system are essentials that I heavily rely on.     

Does Trouble Find You?

Do you ever find yourself in trouble? Or do you insist that trouble has a way of finding you? Teaching my daughter about “opposites” when she was very young, such as happy – sad, good – bad, big – little, high – low (you get the idea?) turned out to be more than I bargained for as she caught on very quickly!

When she was still at that adorable young age where a child will be thrilled in going almost anywhere with a parent, I took her to a local swimming pool. After a couple of hours playing in the water, we entered the ladies changing rooms. My daughter took delight in proudly demonstrating what she had newly learnt, and  pointed at a lady standing near us in a wet bathing costume and said emphatically “thin”. The woman smiled warmly back at my daughter who was rather pleased with herself at grasping the concept of opposites. She then pointed to a large curvaceous naked woman opposite us, and before I could stop her, in a clear voice loud enough so everyone could hear, she said “fat”! It was at this point I wanted the floor to open up and swallow me!  

Going Slow

I’ve gone from full throttle down to first gear. Keeping it low and going slow is all I can do these days. I have been fighting with every ounce of energy and pushing myself to the max. and doing more than I should, pushing my body too far, which can be counterproductive. Even my writing has slowed down – my world is becoming smaller. Here is a short poem I wrote a few days ago.

Parkinson’s mocks me, shocks me, shakes and rocks me,

It won’t leave me alone, night or day,

Parkinson’s appals me, stalls me, tricks and pulls me,

Unpredictable in every way.

Parkinson’s aggravates, irritates and infuriates me,

This is not what life should be.

Parkinson’s hounds me, astounds me, is always around me,

Torturous symptoms won’t let me free.

(Written by Elaine Benton ©2015)

Chicken soup with Attitude!

There is something undeniably wholesome and comforting in steaming hot chicken soup. Add some delicate thin noodles and you have a bowl of liquid heaven, that imbibed holds magical powers and secrets passed down from mothers to daughters through the generations. Each family has their own version that sets their soup apart from others, but the main elements remain and chicken soup is known for its soothing and comforting properties that act like a tonic.

I do little cooking now, but decided to attempt making a pot of chicken soup. Knowing how my hands often shake and lack dexterity, I don’t shake salt or spices straight into the food for fear of an enthusiastic shake too much, will render the dish inedible. Having a senior moment, or perhaps it was a Parkinson’s moment, I forgot and shook pepper straight into the bubbling pot of soup. I wasn’t quick enough and it was too late to try and scoop out some of the pepper.

When my family politely ate my chicken soup that night, it went very quiet around the table as they sipped the golden hot nectar. It was way too hot! Not in heat, but in a peppery spicy way. I apologised to them for spoiling the soup, but they were determined not to let a little pepper get in the way of them eating my chicken soup. “It’s chicken soup with attitude” my husband told me. He always has the most amazing way of looking at things, even when there seems little hope, he endeavours to find something positive in everything.

Take a look at my latest article on The Huffington Post. Wishing you all a very good weekend.

Make the most of it

“Thank you” to all who inquired, realising that something must be wrong, as I haven’t written my weekly article for The Huffington Post recently. Thankfully I'm feeling a little better and was able to write and submit a short piece entitled “Night Time Antics”. 

I’ve been suffering terrible fatigue along with worsening symptoms of Parkinson’s making it difficult to accomplish anything these days. I’ve always said the most predictable thing about Parkinson’s is its unpredictability!

I think most fellow sufferers would concur that having a bad day, for no apparent reason, makes one feel like the situation has definitely made a turn for the worse. Yet suddenly having a good day, much to one’s relief, can renew hope and give one the strength to carry on. So today is one of those much awaited GOOD DAYS! And I’m going to enjoy this feeling whilst it lasts.

Forgive me for not writing more now, but something one learns quickly when living with on-going ill health, is to make the most out of every moment. So instead of sitting here writing, I am going out with my darling husband, even if only for a couple of hours, I don’t want to waste this opportunity.

I wish you a good weekend wherever you are and whatever you are doing. I hope you too are having a good day and urge you to live in the moment and grab life with both hands. 

Becoming Forgetful

I think it’s safe to say that most of us are petrified of becoming forgetful, losing our marbles and being a burden on family. A friend told me of a lovely saying her close friend’s mother used when leaving somewhere. To ensure she had not forgotten anything, her glasses, a cardigan or some other personal item, getting up from a chair, she would turn to the chair she’d been sitting on and say “Goodbye chair”. By doing this, as silly as it may sound, it makes you take one last look, to ensure you have all your possessions with you and nothing has been forgotten.

Having spent much time in hospitals over the years, I have on occasion lost various items of clothing, including a rather worn but much loved cardigan and on another instance a fabulous jacket. It always seems to be a favourite piece of clothing that goes missing, and never an unimportant item. Why is that?

I was at the pool the other day, and as I was getting up out of the chair, I found myself saying “Goodbye chair”. I have to tell you, it works!

Gaucher Awareness

I wrote a collection of poems about growing up with Gaucher disease to hopefully help spread awareness by sharing a personal story from the patient’s perspective. Putting a face, name and a unique story to any rare disease brings attention and  sheds some light on not only what the patient goes through, but also how a family is affected and the ramifications involved suffering a rare disorder.

Please take a look at my Amazon Author’s Page and share with anyone you think may be interested.

Comfort Food

We’ve all been there, done that……when you can’t decide what to eat, instead of eating a good square meal, one resorts to impulsive grazing in the kitchen. In this manner, without noticing or meaning to, we can consume large amounts, not to mention those nasty calories that relentlessly hug our hips and other areas where least desired. The saying “what passes the lips ends up on the hips” may sound cliché, but true it is!

Ever find yourself standing with the fridge door open, just staring inside? You know full well what’s in there, but somehow you hope that inspiration will hit you, or some forgotten delicious goody will magically appear and jump right off the shelf and smack you on the nose. Eating for comfort is common place, but when your mobility is compromised, one can ill afford to carry extra weight, which puts unnecessary strain on joints and limbs.

Burning off extra calories isn’t always possible when chronically ill, but to deny oneself favourite foods or the occasional special treat seems harsh. Life is hard enough without being punished by making small pleasures, such as certain foods exempt. Exercise of some sort should be a regular part of our daily routine, but like myself you may have neglected this important activity. Only recently I began swimming on a regular basis and regret not having started this a long time ago. Better late than never I guess.

October 2015 Gaucher Awareness

Wearing two hats, one for a rare genetic disease and the other hat for a common degenerative neurological disease, you would think I have my hands full, or at least enough hats! After all, how many hats can a person wear? But October is Gaucher Awareness Month, and so today I am wearing my “Gaucher hat” in the hope of raising public awareness of this rare disorder.

A great initiative this year was ‘The Spotlight on Gaucher Film Contest’ which is an online video competition. It provided a platform for Gaucher patients, and their families to share their unique stories. The winning video entries were announced for International Gaucher Day - October 1, and can be viewed.

If you were to ask my husband what is the definition of ‘rare’?, like most men, I’m sure the first thing that would spring to mind is steak! Medium or rare, perish the thought of well done, add a side dish of French fries and a cold beer to wash it down, I wish this were the only context I associate with ‘rare’. For me, the word ‘rare’ conjures up a very different picture, as I was born with a rare genetic disease. Looking up the word ‘rare’ I found it said: of an event, situation, or condition, not occurring very often, ‘a rare genetic disorder’ synonyms: infrequent, scarce, sparse, few and far between, like gold dust. Well I don’t know about ‘gold dust’, but the remainder pretty much says it all.

Take a look at my article in The Huffington Post and please ‘share it’ to help raise public awareness.

Doctor Patient Relationship

When a doctor goes home at the end of a day, I presume he doesn’t take his work with him, or at least he shouldn’t for his own sanity and the sake of his family. But for a doctor to fully understand what it means to live with a chronic disease, he needs considerably more time than the short allocated slot in a regular patient/doctor visit.

It’s all very well comprehending the mechanics of a disease, but can a doctor appreciate the quiet desperation of a patient who is clutching at straws, ready and willing to try anything that might eradicate what ails them? A doctor would have to step into some pretty uncomfortable shoes to get a glimpse of, or understand fully what it’s like from the patient’s perspective.

In the short time allocated during a visit to a doctor, an awful lot, possibly too much, has to be accomplished. The seemingly less important factors often get dropped by the wayside, which are either brushed aside, or dealt with through another channel. I should imagine for many doctors it’s frustrating not being able to help adequately and improve quality of life when treating Parkinson’s patients. Ultimately I'm sure this makes a doctor’s job far from satisfying and is not the reason why a doctor chose such a vocation.

Although the present system and medications leave room for much improvement,  progress slowly but surely from both doctors and patients is being made and hopefully participatory medicine is the way of the future. Take a look at this clip, “From God to Guide” which you may have seen before, but is well worth watching again. 

I've recently added swimming to my weekly routine, but have come up against some strange reactions. To read more take a look at my article in The Huffington Post.

Breathing Difficulties

The first symptom people generally think of with Parkinson’s disease is shaking, and possibly they may have heard of tremors, shuffling, or freezing. If I were asked to quickly list all the symptoms I suffer from, I would have a hard time for there are many and still counting! The latest symptom to add to my long list is occasionally  having difficulty in breathing. This symptom may not be as common as tremors or shuffling, but for those patients like myself affected by breathing difficulties, it can be rather scary.

It was explained to me, that just like walking can be severely inhibited by frozen or rigid painful leg muscles, one’s breathing can also be restricted due to the core trunk muscles which control the inflation and deflation of the lungs. It’s therefore understandable if these muscles become rigid, that ribs and lungs become cramped and breathing becomes problematic.

Apart from the fairly obvious immediate concerns affected by the inability to breathe properly, this symptom has further disturbing ramifications which can impact quality of life. I am well aware that the risk of chest infections rises if the lungs function poorly, by the reduced ability to cough properly. I have also noticed on occasion when my breathing is not good, making it difficult for me to talk, my speech is reduced to a husky breathless voice (far from sexy I can assure you!). We make light of this when it happens, and since I’m known in my family for being quite the chatterbox, suddenly not able to talk with full gusto, you can imagine the jokes that ensue.

No matter what new symptoms Parkinson’s throws at me, my family and I continue to live life to the full and maintain a sense of humour.

Cycling for Gaucher disease

On September 6^th, Madeleine Abramson participated in a yearly sponsored bike ride from London to Cambridge, again choosing to represent Gaucher disease in aid of raising funds and awareness of this rare disorder. 

As always, the race started from The Royal Free Hospital in Hampstead (London) and ended at Addenbrookes Hospital in Cambridge. A rather appropriate start and finish line as both hospitals have excellent Gaucher research centres.

There were a total of 76 riders, of which 69 were riding in aid of Gaucher disease and the remainder for various other charities. Amazingly two of the riders were Gaucher Type 1 patients who were accompanied by their families. What a great achievement for fellow sufferers to participate in such a ride. The weather was perfect – a sunny beautiful day. The 100 km route (63 miles) took the riders through some beautiful English villages such as Buntingford, Nuthampstead, Newton, Sheldon and Newgate Street. With four designated stops, each offering wonderful refreshments, it took Madeleine 7 hours to complete the ride. A grandmother and her daughter, kindly volunteered again this year to bake a delicious assortment of cakes which were served to the participants when they arrived at the finish line. 

It’s not too late if you’d like to donate, so please go to the official “mydonate” site. Thank you Madeleine on behalf of all Gaucher patients and their families. If you'd like to read more, take a look at my article in The Huffington Post.

Vulnerability

No longer steady and sporting the Parkinson’s shuffle as I walk, I suddenly am very conscious of how vulnerable I must appear. I hadn’t given it a lot of thought till recently. Less desirable parts of town that once I wouldn’t have thought twice about briskly walking with an air of confidence, now pose a threat. I’m beginning to understand why some living with Parkinson’s are reluctant to go out. Looking like an easy target, makes me feel distinctly uncomfortable.

I remember some years ago, my elderly mother had her purse snatched when a young pick pocket focused his attention on her. As he took hold of my mother’s purse he gave her a shove which sent her unsteady small frame to the ground. Thankfully she didn’t break anything, but was a little shaken and sported some nasty colourful bruises for a while. However a friend of hers who had her bag snatched, wasn’t so lucky, and when thrown to the ground, unfortunately broke her hip. Regrettably the elderly, infirm and disabled are sadly prone to being taken advantage of by unscrupulous persons who have no conscience.

With this in mind, I’m acutely aware of how easy it would be to fall or be pushed over in a crowded unsafe environment. Markets, busy streets with throngs of pedestrians,  or large gatherings; whether an easy target for a thief, or simply a casualty of overly  exuberant youngsters not paying attention – the outcome could be awful. So as much as I hate it, common sense tells me to steer clear of these possible dangers from now on. 

Sharing one's story with others when living with a disease brings greater understanding and general public awareness. Take a look at my article in The Huffington Post for maybe you too have a story to share. 

Get Well soon

A very common phrase, that literally rolls off the tongue “get well soon”, meant with sincerity, but in certain circumstances is inappropriate, particularly when a person isn’t going to make a recovery. Have you ever felt awkward unable to think of what to say?

Not knowing what to say often leaves people uncomfortably speechless, and in some cases resulting in avoiding altogether the person with declining health. I believe it’s always better to say something rather than nothing, no matter how lame or cliché you think it may sound. I can assure you, receiving some reaction or comment is very much appreciated, rather than silence and being ignored.

Having someone deliberately avoid you because they are embarrassed and don’t know how to handle the situation is unfortunately more common than you’d think. I’ve experienced this personally and had someone turn the other way, knowing full well they’ve seen me. I couldn’t believe how a person could be so cold and lack empathy. No response can be most hurtful, so no matter how hard you may find it searching for the right thing to say, just stop and think a moment how you would feel were the shoe on the other foot.

Making a good impression and leaving one's mark is something we all aspire to. However there are times when it's best not to leave a mark. Take a read of my article in The Huffington Post.

Swimming

A girl friend thoughtfully took me to our local pool one morning. It was a fantastic  feeling being in the water and I felt almost “normal” in the pool (whatever “normal” is!). I hadn’t been swimming for over 3 years and I had wondered if I’d sink to the bottom like a weighted corpse. But I needn’t have worried, for the repetitive natural action of swimming felt so good, it was as if I’d been to the pool just last week. I was able to swim much more than I had envisaged, but what amazed me more than anything, was whilst buoyant in the water, I could barely feel the Parkinson’s at all. Of course I paid for my enthusiasm dearly later on in the day, and had the most dreadful night.

The longer I live with Parkinson’s, the more I suspect how little we all understand about this unpredictable disease. If anyone had seen me in the water that day, they would never have thought I suffered from Parkinson’s. However, the moment I stepped out of the pool, I was reduced  back to shuffling and Parkinson’s was once again in full swing. How can I expect other people to understand what I go through, when I hardly understand it myself?

Perhaps there is a solution: find an activity of a repetitive nature that allows you to participate and joyously push Parkinson’s out of the way. I would stay in the pool all day and night if this kept Parkinson’s out of my life. Maybe a job at the dolphinarium would be the answer, where I could be waterlogged to my heart’s content. I fear I may end up looking like a wrinkled prune and smelling of fish, but this would be a small price to pay!

Depressed or frustrated? - it's a fine line and a topic for my article this week in The Huffington Post.

Keeping up with Constant Changes

Living with a long term chronic illness, (and I live with two!) really pushes one to the limit and I find my husband and I are on a constant learning curve as both diseases progress. How can anyone prepare you for what lays ahead? The only thing one can predict, is the unpredictability of both diseases.

Just when we think we understand and change our mind-set to accommodate lifestyle changes, something new happens and throws a spanner in the works. Being flexible to an altering situation that effects one’s daily life is imperative. Unusual circumstances can present difficulties that you hadn’t even thought about. It can be something as simple as brushing your hair.

I keep my hair long, as this way I can neatly tie it back and don’t have the worry and inconvenience of visiting the hairdresser every six weeks or so. I recently realised I’m unable to brush my hair properly, and with a full thick head of long hair, if not brushed thoroughly, I could end up looking like I’ve been pulled through a hedge backwards! Not a good look for anyone! So it was off to the hairdresser this week to have a new shorter manageable hairstyle. Life is all about changes and going with the flow. 

My latest article in The Huffington Post is dedicated to my dear mother-in-law who passed away a few days ago, and shall be very much missed.

This is Your Life

Do you ever feel that everyone around you is experiencing problems of one kind or another? This is life! I recently wrote to someone that life is full of ups and downs, and anyone who doesn’t experience this, isn’t really embracing life. If we didn’t have any “downs”, how would we be able to recognise and appreciate the “ups”?

Supporting one another when our spirits need to be lifted, receiving words of compassion and understanding, gives us renewed strength and the ability to carry on. It should be a two way street, being there for those you care about, and someone being there when you need a shoulder to lean on, a kind word and a smile.

I was once told that it takes fewer muscles to smile than it does to frown, and with this in mind, I usually have a smile on my face. I remain positive and optimistic, clinging to my favourite four letter word: “hope”.

Having the tools to cope living with a chronic disease is paramount. They are not the kind of tools you can pick up from the hardware store, but rather abilities we hold deep within ourselves, that are either inherent or learnt out of necessity. A sense of humour is valuable in these situations, but of course one cannot suddenly acquire a great sense of humour – either you have one or you don’t! Most fellow sufferers I've come across, appear to have a good sense of humour and rely heavily on their wit, sarcasm or dark humour, albeit slightly macabre to get them through each day.

Now here's a guy who has a great sense of humour and won't give in. Take a look at this short amusing video by Mitch Faile - you'll be smiling I can assure you! 

The world is a small place, but having Parkinson’s it appears to be getting smaller! Take a moment to read my article “It’s a small small world” in The Huffington Post.

Coughing & Gagging

If you suffer Parkinson’s you may be familiar with the horrid phlegm problem!

Sherryl Klingelhofer, who took care of her father with PD and has dedicated herself to helping others in his memory, has so much good advice to offer, I had to share the following useful tips with you:

“Here’s an idea if you are already dealing with this common Parkinson’s problem!

We had a Physical Therapist show us an exercise to help the body "remember" how to swallow that helped Dad clear his throat a bit.  Doesn't get RID of the phlegm, but made it easier to deal with.

SIT UPRIGHT, make sure the head is over the torso and the torso is not leaning back or in a concave shape that would curve the oesophagus or compromise the entry in the throat. If needed, put a small pillow or rolled towel behind the spine against the back of the chair to assist upright posture!

Cough. Drink a SIP of water. Cough. (you may need to swallow, do so with or without the sip of water)

Wait and repeat about half a dozen times. Do this a couple times daily in between meals, but also try it BEFORE eating to jump start the brain.

That laying back in a bed or lounge chair is a real booger (we might just as well stay in icky-mode)! It lets the phlegm sit right on the "swallower", so positioning is really important!  Next time you start the choking, shove your hips back into the chair and lean slightly forward to cough/swallow.

You can practice opening and closing the throat if swallowing is being compromised!  And since you never think about keeping the muscles in the throat active, until after the fact, begin these now to avoid future issues!

Say “X” then “R” several times (yes, out loud so it can be heard!)---do it slowly and pretend you telling someone how to enunciate and say them correctly!

Say “QUICK-QUACK-QUIRK” several times as above

Make a fire engine noise by saying (loudly!)  “rrr-RRR-rrr-RRR-rrr-RRR” and make it go up and down as they do:  you will feel your throat at work!”

Eating Out

Going out to eat is a leading social activity, but for someone living with Parkinson’s it can become a little daunting. Self-conscious of bad posture and poor walking, shuffling as if 100 years old, it may be just in my imagination but it’s as if all eyes are upon me. Eating proves difficult and trying to choose something from the menu that requires little dexterity, finger food being the first choice, where a knife and fork can be politely discarded. I used to love going out, but these days it’s a different story. Just getting showered, dressed, doing my hair and make-up, takes every ounce of energy. This is not counting the emotional energy required when going out. I can spot someone with Parkinson’s a mile off, and no doubt I stick out in the same way to fellow sufferers, with those familiar tell-tale signs we all come to recognise.

I was taken out recently for lunch to a nearby café and was amused to read the rather imaginative menu. There was a “Snow White Salad” and a different salad named after each of the seven dwarfs. A “happy salad” sounded positively inviting, and I would have happily ordered it. However, I don’t think the “sneezy salad” would evoke the same reaction, and I wondered if the chef added a secret ingredient I’d rather not know about. I wonder if this is the least ordered dish on their menu? Likewise the sandwiches also bore names of well-loved characters from children’s fairy tales, and we ordered a Pinocchio and rather fitting, yes you guessed it........a Geppetto sandwich! 

Quality of Life

Over the years I have been asked by doctors and health officials to fill in a “Quality of Life” questionnaire appertaining to Gaucher and Parkinson’s disease. I understand this can only give the doctors an indication of how the patient perceives their illness and how well they are coping, but I believe this test leaves much to be desired. Firstly, there is the question of background. I was born in England and once when filling out one of these questionnaires in the USA, I realised that although the British share a common language with Americans, the differences between us culturally is remarkable. I am quite sure my answers on the American based questionnaire bared little relevance to my true situation and if anything gave a false picture.

The answers given – usually multiple choice style – do not take into consideration cultural differences nor how a disease can have very different repercussions on an individual. Since we are all very different, the answers are naturally subjective. There is also a matter of honesty. There are usually very personal questions relating to one’s sex life, depression and even suicidal thoughts. How many people really answer these extremely intimate questions truthfully? Doctors may be surprised to find the answer is: very few!

I don’t know what could be created to replace this system of “quality of life” questionnaire that no doubt most people have filled in at one point or another, but in my opinion, the present system helps neither doctor or patient. 

Men V Women

Men and women are intrinsically different. I am not talking about physical differences – I am referring to the psychological state, where one’s emotions can either make or break a situation. It is in a woman’s very nature to question, persisting in getting not just one answer, but several if not satisfied. Men and women handle ill health in very different ways. Women usually share with one another, thereby alleviating some of the isolation experienced by anyone living with a serious on-going long term disease.

Coping techniques are important tools in living with ill health. Women are usually more willing than men to open up, revealing feelings that are often kept hidden. Getting to the root of a problem, not leaving anything hidden and uncovering difficult topics that require airing, is a healthy mental attitude. Like peeling back the countless layers of an onion, revealing oneself can be scary and evoke feelings of vulnerability. Anything worthwhile in life takes work, energy and motivation, so don’t be afraid to peel back those onion skins, to reach your full potential. 

What have I been up to this week? With a young puppy in the house, life is not dull that's for sure. Grab your cup of coffee and take a moment to read my latest article in The Huffington Post.

Gaucher Film Contest

As an advocate I have been sharing my story, in the hope of bringing greater awareness to Gaucher disease. Story telling is a wonderful way of enlightening others about a rare disease. It was with this in mind that I wrote a collection of poems which has been made into a book and is available on Amazon.

I decided to share my story through poetry, recalling my early years to adulthood, which some may find resounding similarities to their own experiences. I hope fellow Gaucher patients and their families will know they are not alone, and realise just how far medicine and technology has come in the last 50 years. Circumstances were very different when I was diagnosed, and thankfully over time great strides have been made.

I am honoured to be a judge on the international panel for "The Spotlight on Gaucher Film Contest" aimed at patients and their families. The contest encourages those living with Gaucher disease, to tell in a unique way the story of how they live with a rare disorder. To find out more, click on this link and read about an exciting opportunity this summer to become involved, or read more in my article in The Huffington Post.

If these walls could talk!

Waiting for my meds to kick in, is not dissimilar to waiting for a watched kettle to boil. The longer I focus on this point, it seems to take forever as I impatiently wait to come “on”. However the other morning I was thankfully distracted by the hilarious antics of our new puppy whilst our daughter attempted to wash the floors. As she moved the wet mop back and forth, our puppy eagerly chased it, and at one point was actually sitting on it as it slid over the floor tiles. Washing the floors clearly looked like a great game to Rosie as she held on for dear life. I was laughing so hard, my sides began to ache (but in a good way). Rosie weighs 4.5 kilos and is growing daily. I don’t think she’ll be able to hitch a ride upon our floor mop when she’s fully grown and weighing somewhere in the region of 55 kilos!

They say laughter is the best medicine – and I have to agree. There is nothing like having a really good laugh to release stress and tension and take one’s mind off a situation. Having a pet, in particular a dog, makes a wonderful companion, especially when a person is housebound and unwell. Although a great deal of work, not to mention expense, the benefits most definitely outweigh the downfalls.

No one can take away happy memories we’ve made over the years. When I think of all the funny things that have happened and good times we’ve had in this house, if these walls could talk, they’d have quite a story to tell. Travelling abroad is not easy for anyone suffering ill health. I have written about this topic in The Huffington Post.

Gaucher - Handle With Care

Living with Gaucher disease presents its own challenges. Even something as simple as an X-ray poses difficulties not understood by those who know nothing about this rare disorder. Upon one visit to an ER I had chronic bone pain and required X-rays. The technician, although far from green, had no idea how much pain I was in. Being handled roughly can prove frustrating for he didn’t realise I needed help - I couldn’t get onto the bed and manoeuvre myself into position. I required assistance in moving my legs gently for hip joints are often delicate and painful. I almost need a sticker on my forehead “handle with care”.

An X-ray technician needs to understand when dealing with a Gaucher patient, every move can be excruciating, and the bones require delicate handling. Positioning of the patient’s limbs and joints is also paramount in taking a good X-ray. A technician needs to know what to look for and be able to recognise the abnormalities that are indicative of Gaucher disease. 

Take a look at my article this week in The Huffington Post which is about hosting dinner parties with Parkinson's in tow! 

A Puppy for Parkinson's

Having lost my canine companion of nearly ten years, the house felt strangely empty without her presence. It’s surprising how a dog can fill a place in the home touching our hearts and literally become part of the family. The benefits of owning a dog when disabled or living with a long term illness are endless.

We recently bought home a new puppy to become my four legged companion and assistance dog. Although generally Labradors are used for this purpose, there are other breeds equally suited to the task. We decided to stick to a Dogue de Bordeaux, being the same breed that over the years we’ve come to know and love. These gentle giants are strong heavy set dogs who are family orientated and smart, making an excellent choice as long as you don’t mind the drool!

Although I have experience with training dogs the basic commands such as sit, stay, down etc. I knew I’d need professional help for a new puppy to become my assistance dog. My husband and I fortunately found someone qualified in this special field and we’ll be working together training the puppy to suite my individual needs. Beginning extensive training when a puppy is very young bears the best results, and should one need to increase commands for various new tasks at a later stage, as the Parkinson’s progresses, this poses no problem as the dog is already accustomed to learning.

We named our new four legged addition to the family, Rosie, and needless to say I wasn't short of material for this week's article in The Huffington Post!

Slowing Down

It takes me so long to do anything these days, I seem to be accomplishing less and less. Maybe there’s a time warp in our house where time speeds up, but I remain  exactly where I am – getting little or nothing done! I heard someone describe living with Parkinson’s as if driving a car with the handbrake on. One still moves, but not smoothly or in a natural fashion. I thought this was a good analogy, immediately conjuring up a picture in one’s mind.

Knowing my limitations, I endeavour to allow long enough to complete the task at hand, but often I find myself pushed for time. I used to be as fast as lightning and multi-tasking was as natural to me as breathing. Coming to terms with losing abilities that once I barely gave a second thought to, has not been easy. Before Parkinson’s made its appearance in my life, I only had one speed, and that was “fast”. Now I am relegated to travelling life in the “slow lane” and watch with envy as everyone else overtakes me. 

Do you suffer from night sweats? Menopause or yet another symptom of Parkinson's? I share with you some thoughts in my article "Who Turned Up The Heat?" in The Huffington Post.

Denial

One automatically assumes that it is the patient who is in denial, but there are sometimes circumstances where the one in denial is the caregiver. Understandably so, after any diagnosis, life may never be the same again. It brings everything into question, and plans or dreams for the future have to be altered accordingly and in some cases shelved. Disappointment and frustration at a situation we cannot control can appear overwhelming.

Taking Parkinson’s medications, is a fine balancing act to receive optimum benefit, whilst trying to take the minimum amount of medicines one can at the present stage. Understanding the many complex difficulties incurred by those suffering the indignities of Parkinson’s is not easy. It may be that a caregiver just doesn’t get it, can’t appreciate why and how the many side effects and symptoms, despite medication, can’t be controlled some way.

Turning a blind eye doesn’t help anyone. It can only cause friction and upset between sufferer and caregiver. Yet too much attention can feel like being smothered – so it’s a fine line and understandably not easy for either party.  

Being a caregiver, and then finding the tables have turned is a common scenario. I have written about this topic in The Huffington Post.

The Scores on the Doors

I’m not sure who first said this line: “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain” but I find it very pertinent and can relate. This is what life is, and making the most of it, no matter what your circumstances, is by far the best plan. Since being diagnosed with Parkinson’s, I live very much in the moment, and make the most of what I have.

If you too suffer from Parkinson’s you no doubt have good and bad days like myself. I live for the good days and get through the bad days as best I can. What a peculiar and unpredictable disease.

Naturally there are times that are terribly frustrating, such as socialising. When  invited somewhere and Parkinson’s decides to butt in where it’s not wanted, no amount of resolve helps. When this rotten disease is in the driving seat, one has to gracefully concede. It’s not a matter of giving up or giving in, but realising how the disease works and knowing when to fight and when to concede. So the scores on the doors today are Elaine 0 – Parkinson’s 1, but tomorrow will be another day!

When you’ve raised your children and taken care of a parent, now finding you are the one who needs taking care of is a hard pill to swallow. But who cares for the carer? This is the subject for my article in The Huffington Post this week.

Take a look at this YouTube clip, a very original idea on how to draw attention to a cause. They then go on to show you behind the scenes, interviewing one of the participants who happens to be a Parkinson's patient. This clip speaks volumes and expresses exactly what so many of us experience and can understand.