Travel with me

If you've been following my blog you will have read that I wrote an Abstract entitled “Writing as Therapy” that was accepted by The First International Congress on "Narrative Medicine and Rare Diseases", which will be attended by doctors, people working in the medical field and patients suffering from rare diseases along with their families. I was asked to give an oral presentation, and today my husband and I are off to Italy. I will be blogging each day from Rome, so in a sense I will be taking you all with me, on this opportunity of a life time, where I’ll be representing Gaucher disease. I seem to have two hats to wear: Gaucher disease a rare chronic genetic disease and Parkinson's a common degenerative disease. So read my blog tomorrow morning and you’ll be with me in spirit in a wonderful country where the people are warm and hospitable; home of the Opera, the land of the original delicious Parmesan, pizza and pasta, and the many beautiful historical sites that maybe we’ll get a glimpse of during our short stay. Today will be a long tiring day, and we've booked assistance at the airport, as we’ll be taking my wheelchair with. So wish us Bon Voyage and I’ll catch up with you tomorrow, once we arrive in Italy. Ciao!

Oral Presentation

Thank you everyone for your wonderful warm words of support and good wishes upon the exciting news of my Abstract being accepted by the First International Congress - Narrative Medicine and Rare Diseases. As you know I have been asked to give an oral presentation on 4th June 2012, which is a great honour and I am thrilled. The keynote speaker is Brian Hurwitz from the School of Arts & Humanities at King’s College, in London and I look forward to meeting him. I will be the only patient representing Gaucher disease who is giving an oral presentation so feel it is an important opportunity to bring the care of chronic diseases to the forefront from the patient's point of view. Tomorrow we travel to Italy; our bags are packed and my presentation is ready. I have been given good advice from seasoned speakers and feel well prepared. I’m not looking forward to the journey however, as like a bottle of good Merlot wine, I do not travel well.  During the flight, I suffer from Gaucher bone pains due to the cabin pressure, and the Parkinson’s makes it very difficult and uncomfortable to sit long in an airline seat. It usually takes me a full day or longer to recover from a journey, but it’s worth it. I wouldn't miss this opportunity for the world.

To speak or not to speak

I bumped into someone in a shop who I haven’t seen in a while; hugging me warmly, she kissed my forehead, and asked in a lowered concerned voice, “why are you in a wheelchair?” I hesitated for a moment, not quite sure if to tell her the truth that I have Gaucher and Parkinson’s, but decided it was too much information for an acquaintance to take in. I didn't have the emotional energy to start explaining my whole story to her, and then have to expend further more energy in comforting and reassuring her that I'm OK! It always makes me laugh, when I find myself consoling other people when they hear my story! This has happened before, and learning from experience, occasionally I find it better to tell a ‘white lie’, so sometimes it’s just easier to say that my legs are not too good and there’s too much walking for me in a mall. This may sound feeble, but it usually satisfies someone who doesn't really want to know and is merely making conversation is just an acquaintance or a person you are never going to meet again. I once made the mistake of telling a curious chatty shopkeeper who insisted on asking me what was wrong, and as soon as I mentioned Parkinson's (I didn't manage to tell him I had a rare chronic disease called Gaucher as well!) he then went on to lecture me about what to do and which doctor to see. Desperate to extricate myself from his well-meaning but misguided help, I couldn't leave the shop quick enough. The same applies when someone asks me “how are you?” I have to quickly surmise who really wants to know, and who is just being polite, preferring me to just say “fine thank you”. I tell you, it's often hard work knowing when to speak or not!

Narrative Medicine

Several people have asked me what narrative medicine is. I am simply a patient and will try to explain as best I can. 

A doctor who treats a patient’s medical problems merely as a problem to be solved, without taking into account the specific emotional and psychological state, along with any relevant  personal family history of the patient is doing only half a job.

Narrative medicine is the process of looking at the entire picture of those who are ill. Patients suffering disease need people around them who can fully comprehend and understand their disease, knowing the symptoms, side effects of treatments, the emotional ramifications that touch other members of the family, talking about long term prognosis, the worries and concerns any patient would have upon diagnosis, treating the patient as an individual person who has a name, and not merely an interesting case, supporting and accompanying the patient through their illness whilst also treating their medical problems.

If you would like to read what the expert Dr.John Launer has written on this subject, I’m sure you will find it interesting. 

Don’t forget to say thank you

After a student has studied seven years, often working several jobs on the side to make ends meet, one has to be highly motivated and dedicated to make it through medical school. Finally choosing an area of medicine they want to specialise in, a career in the medical field begins. I am full of admiration for these enthusiastic young student doctors. I think that being a doctor or nurse is one of the hardest jobs, often low salaries, long unsociable hours and receiving little thanks or appreciation in return. In a hospital ward, the staff are under constant pressure, emergency cases understandably taking precedence and suddenly throwing out all schedules, one needs to stay patient and calm, and take into consideration the incredible daily logistics and organisation that ensure the smooth running of any hospital ward. In specific cases a small number of patients might have genuine reason to lodge complaints, other patients just “like” complaining and making a fuss, some would say “thank you” but simply forget to do so. Fortunately there are patients like myself who appreciate the demanding work doctors and nurses tirelessly do, making sure to show appreciation and saying “thank you” when appropriate. Too many complaints and not enough “thank you’s” can lower the morale of medical staff. I have been hospitalised many times and cannot recall the need to complain. The treatment I have received has been exemplary and I thank all who have cared for me over the years during hospitalisation.

In good hands

Being chronically ill is not a matter of simply being diagnosed and treated by a doctor. There is so much more to treating a patient, which can ultimately lessen the severity of the symptoms, and in some cases, slow the progression of the disease itself, ensuring a better quality of life. If a patient feels he/she is understood by the doctor and respective family and friends, this gives valuable beneficial support and empathy to the person who is ill. Like the reflection of the sun on the ocean, it radiates back, so understanding fully what someone is going through (whatever the disease) and making allowances, being tolerant and identifying with the person’s symptoms is equally important as diagnosis and medication. I am extremely fortunate to be under the care of doctors who understand the importance of narrative medicine, which makes me feel I am in good hands. I value and trust their opinions, and they in return listen to what I report on my visits and pay attention to family medical history and detail. Treating a patient as a person, and not merely as an interesting medical case, encourages the patient to open up, and valuable dialogue between doctor and patient can transpire. When I walk into a doctor’s office, the doctor always looks up as I enter, eye to eye contact is made, my first name is applied, and an interest with compassion is conveyed. This is the sign of a good doctor. 

The best medicine is "good news"!

I have some exciting good news to share with you! I wrote an Abstract for The First International Congress on "Narrative Medicine and Rare Diseases", which will be attended by doctors, people working in the medical field and patients and their families suffering from rare diseases. After submitting my abstract entitled "Writing as Therapy", I waited for a reply. Each day I would eagerly check my e-mail in-box and finally, with great delight and excitement, received confirmation that my Abstract had been accepted. I am being asked to give an oral presentation, in Rome/Italy on June 4th, 2012. As you can imagine, I am thrilled to have my Abstract accepted and to be given the wonderful opportunity of presenting it. It was May 2011 that I started writing the poems for my book "Parkinson's, shaken, not stirred", and when I think of all that has happened during this past year, I find it difficult to take in. Not in my wildest dreams would I have imagined that a few lines of poetry that came into my mind one night would lead to all this. Despite ill health, life can be an amazing journey.

Mirror mirror on the wall

Looking in the mirror, I wonder who on earth is staring back at me. I hardly recognise myself any more. Although I am fundamentally the same person I always was, my inner core remaining intact, the outer façade barely resembles the carefree young, laughing and smiling woman I once was. Smiling to have my picture taken the other day, I could feel my face distorting, and try as I might, my natural smile and shining eyes as if suddenly camera shy refused to co-operate. Thanks to today’s digital cameras, no film was wasted, but many shots had to be taken until finally a decent picture was achieved, which I'm sure was fluke rather than perseverance. I don’t mind the crow’s feet around my eyes which show I've laughed and had fun, or the wrinkles indicating I am old enough to have a little wisdom under my belt, nor the grey hairs that continue to appear adorning my head confirming I've lived life to the full and have an interesting story to tell. What does bother me is the thought of losing my smile, my facial expressions, and the twinkle in my eyes. I know I will still be “me” inside even when these are gone, but dear family and friends, I'm sure will notice these missing elements, and I only hope when that day comes, they realise I'm still very much here.

Patience for Parkinson’s!

There are not too many people, who would have the patience to take me clothes shopping, but a girlfriend of mine, who is a champion of shoppers, along with my daughter, drove me to a local mall. They took turns pushing my wheelchair as we went in and out of endless shops, requiring some careful steering manoeuvring in-between narrow aisles. My daughter and friend knowing what I was looking for searched the rails tirelessly for something suitable. Trying on dresses was a difficult and exhausting long process for me, requiring their assistance in the changing rooms. Stopping for some light refreshments, my friend didn’t bat an eye lid as I dropped cake on my lap, leaving a trail of crumbs on the floor around me. After a couple of hours, all feeling tired, we almost passed by an unlikely looking department store. Not wanting to leave any stone unturned, my friend determined we wouldn’t leave the mall until our mission accomplished, thankfully ushered us in, and lo and behold, we found the perfect dress. It takes a special woman who is a good friend, to be resolute in helping me on what was not a simple task. Shopping for clothes when disabled, is far from easy, especially when buying an elegant dress that is flattering and classic. Someone who takes the time and patience not to mention stamina is a true friend indeed. I was so grateful for the help, as I would not have managed this alone. Thank you “M” for yesterday!

Stick to good news!

Have you ever noticed how bad news always features first on television or radio before any good news? Bad news travels fast (so they say), and we've all heard of the saying “no news is good news”! Wouldn't it be a refreshing change, if good news were reported in equal amounts to the bad? I presume good news is not sensational captivating the audience whilst stopping to gasp at the headlines, arousing gossip and speculation. Where are all the good and wonderful stories out there, about amazing people doing incredible things, uplifting and inspiring us all to be better, making this world a far better place? Since beginning to write my blog, I have had the good fortune to come into contact with many people from around the globe, each one with their own courageous heart-warming story to tell. I have experienced first-hand the best of humanity which restores my faith in mankind.  Being chronically ill, changes one’s perception of life, and the small things that would have once driven me mad, are of little importance today. Knowing in your heart what really counts; acknowledging and accepting, where to focus my energy, are some of the important lessons that ill health has taught me. I always look for the silver lining no matter how dim the situation and give people the benefit of the doubt. My glass is always half full, and every day I count my blessings.  I always endeavour to look on the bright side of life.

One Day at a Time

I am sitting here this morning with my guest blogger for today, the amazing Jill Sadowsky; author of “David’s Story”. Whenever we get together to brainstorm, inspiration extraordinarily sparks our imaginations and we become a power house of new ideas, furthering our respective campaigns offering support and bringing greater awareness. I will now hand over the keyboard to Jill:

Being in contact with an author who is working towards a worthy cause, helps keep things in perspective. My husband used humour whenever he could to defuse potentially explosive situations and in general he found that humour helped him remain positive.

We attended a support group: each one of us mourned a young person whose life had changed; shock, loss, grief, fear, confusion, ambivalence, guilt, helplessness, despair, sadness and hopelessness were common reactions. I realized that problems in coping with these feelings came from doing so without the added comfort of extended family and close friends. But, how could they possibly grasp the enormity of the problem if it had taken us so long to understand?

I asked the group; "How can I avoid regretting hopes and dreams that have become so unrealistic?”

Someone replied; “Don’t wait for your child to fulfill your former expectations. Alter them. Learn to forge new dreams. Take one day at a time.”

Of all the advice I ever received; take one day at a time proved to be the most helpful.

Choking

Choking on food or on one’s own saliva is a common symptom of Parkinson’s. Having difficulty in swallowing is very unpleasant, and although naturally the immediate reaction is panic, this is the worst thing to do. When unable to swallow, I have learnt to throw myself into “relaxation mode” and as soon as I'm calm, I am able to swallow again. Sucking on boiled sweets (hard candy) helps considerably when having difficulty in swallowing, so keeping a tin of these handy is a good idea. I have a nasty sore throat at the moment and occasional bouts of frightful coughing rendering me breathless. Last night I was coughing so badly; the muscles in my throat swollen, I suddenly found myself gasping for air. What started as a simple coughing fit, quickly turned into a frightening situation of not being able to breathe, and despite my resolve I started to panic, which of course made matters worse! My husband, who has taken first aid courses, quickly stepped in, and thankfully due to his clear level headed quick response, he managed to calm me down.  Gasping for air, but finally able to breathe again, thanks to my own personal superman, my hero who doesn't need to quickly change his clothes in a phone booth, I am sitting here writing my blog as usual this morning. In our household, there is most definitely no shortage of excitement!

Parkinson’s “party” at night!

Parkinson’s patients often can’t sleep at night, and laying here staring at the ceiling, trying not to wake my husband, is difficult not to mention intensely boring. Why not make the most of that time? Instead of lying awake doing nothing, try doing something; preferably that does not disturb everyone in your household! I have found this time to be my most creative, and this is when I write. But if writing is not your forte, find something that interests you. Catching up on your e-mail, playing brain challenging games on a computer can keep one’s mind agile, find a chat room for Parkinson’s patients and you’ll always catch someone in the world who is awake in the middle of the night. Many people experience that their creative leanings are heightened and a need for expression is strengthened. This is a great opportunity to maybe start painting, tapestry (with large holes in the fabric), or any craft project that helps with dexterity keeping your fingers nimble. Don’t waste this precious time feeling cheated out of a good night’s sleep or feeling sorry for yourself, look at it as a gift of extra time you've been given to accomplish things.

Cooking up a storm

Due to Parkinson’s over the last number of years, I have slowly lost the ability to do many of the things I once took for granted. One of my great pleasures in life is cooking, and fortunately I can still manage to cook up a storm. It may take me twice as long; breaking the occasional dish or glass along the way, dropping and spilling food on the floor which delights the dog no end, not being able to smell any more I have to continually rely on my kitchen timer, and am exhausted beyond words after a session in the kitchen. However, the immense pleasure I get from creating delicious food, baking cakes that even the staunchest of dieters will break and fold to have a slice, is well worth the time and effort. This is what family and friends often do not understand when I invite them over to our place, their reaction being: “it’s too much work for you”. I realise this comes from a place of love and concern, and I appreciate the consideration. One of my favourite films is “Julie and Julia” with Amy Adams and Meryl Streep and the day I can no longer cook will be a sad day indeed. Doing something that you truly enjoy, are passionate about and hopefully good at, makes you feel good. If you can manage to do even just one thing a day that brings a smile to your face, contentment and joy – go for it! Your “thing” may not be cooking up a storm, but I'm sure you’ll come up with something that will leave you feeling pleasurably satisfied. 

Parkinson’s Poetry spreads the word

Getting my message out and spreading the word takes many hours painstakingly working on the computer through the Internet, reaching those who need support whether they be fellow sufferers or caregivers. Slowly the public are becoming more aware that Parkinson’s is not a disease that only affects the elderly, but can strike the younger generation too. I was just 44 when diagnosed, and shockingly have since come across many people diagnosed much younger than this. The need for education and further awareness is paramount. Parkinson’s has attacked me, which I take personally and will fight tooth and nail. I will not give in. I will not let Parkinson’s ruin my life and that of my wonderful family. I was thrilled that my book and blog site now appear on “New Book Blogger” Website along with “A Poet’s Word” Website. Help me in my battle by spreading the word. Pass on these links to anyone who has Parkinson’s or is a caregiver. Together we are millions of people worldwide, and strength in numbers we can fight this lousy disease, joining forces with doctors, researchers, scientists, pharmaceutical companies, sufferers and caregivers. I have faith we will win this battle.

Special Thanks

I wanted to say a special “thank you” to a particular lady for it is an honour and privilege to have her in my life. Getting to know someone properly over the years, is much like peeling an onion with many layers, as each one is removed, yet another facet of character and personality is revealed. I continue to learn and be amazed at the generosity of heart, understanding and supportive spirit of a woman I hold much admiration for, and who is very dear to me. As we all grow older, and hopefully a little wiser, it has become very clear to me who I can count on and who I truly enjoy spending time with. I have little patience or time for superficial friends, and would rather be in the company of someone who has depth, and yes layers – like an onion! Having poor health one is not afforded the luxury of wasting precious energy and time, therefore I highly recommend concentrating on doing things you enjoy that are good for you, being in positive and uplifting company, and making the most out of each day. Cherish and spend time with those you love.

A test of friendship

I spoke of family relationships in previous blog entries, but often friends have a hard time dealing with Parkinson’s too, even though they don’t liver under the same roof. I am constantly astonished by some people who have no tolerance or empathy, and would rather cut off relations than deal with (in their eyes) an unpleasant situation. This shows poor character indeed, for none of us know what the future holds in store, and anyone can be struck down with ill health. Unfortunately with Parkinson’s, and let’s be brutally honest here, the situation isn't going to improve, unless the miracle we've all been waiting for suddenly materialises. Parkinson’s being a degenerative disease, makes it very hard for family and friends to see the changes that slowly take place transforming someone they loved dearly into a façade of the person they once knew. Some friends stay committed, but others make a dive for the door and keep running, not even looking back to see if they have hurt or insulted anyone’s feelings. I wish them well, and hope they never know what it is to lose one’s good health.

Suggested foods for entertaining

One of the most difficult situations causing great embarrassment, is being at a function or someone’s house, and refusing food that is offered, simply because it will prove too difficult to cut or eat in a dignified manner. Maybe people could be a little more aware of what foods are difficult to eat, and ensure there are some dishes that are “Parkinson’s friendly”! Olives, small gherkins and bite size pieces of cheese with pineapple on tooth picks are easy to pop straight in one’s mouth without the use of a fork. Anything that is spread on a cracker, if the cracker requires more than one bite, proves difficult to eat, and especially toppings precariously piled onto slices of crostini – these are disasters just waiting to happen. There is an old traditional English dish called Kedgeree, which is a particular favourite of mine, and this makes for a tasty meal that is easy to eat and mishap-free! A delicious risotto is also easy to eat with a fork or spoon in one hand; the sticky rice holding together the ingredients. Mashed potato, wonderful on one’s plate; can be used as a form of “food glue” sticking other foods together ensuring no dropping. Peas, spaghetti any steak on a bone should all be avoided like the plague! All it takes is a little imagination and trying to put yourself in “Parkinson’s shoes”.

Hot & Cold Flashes

One normally associates hot and cold flashes with the menopause, but this temperature sensitivity can be another symptom some Parkinson’s patients experience. Of course unlike menopausal flashes that will hopefully diminish over a period of time, Parkinson’s flashes appear to stick around for good. When I first experienced these irritating hot and cold flashes, I put it down to menopause, but after speaking to several patients who encounter the same thing, I see I'm not alone. A healthy woman experiencing a hot flash can at least whip off a layer of clothing with ease, but when you have Parkinson’s, removing one’s clothing quickly is not always possible. I frantically struggle and wriggle trying to extricate myself, sometimes in desperation my clothes end in a frenzied tangled mess requiring assistance. It’s as if my body temperature gauge has gone awry.I tend to now wear layers, so that clothing can be removed or put back on again with relative ease.

Internal tremors

People associate Parkinson’s mostly with shaking and tremors which are clearly noticeable, but there are also internal tremors which are not visible to anyone else but are highly unpleasant. These tremors can occasionally literally drive me crazy, and I despair when people say to me “you look so well, I can’t see you shaking” they have no idea what is really going on at all. The tremors are exacerbated by any stress or tension, and seem to be inside my arms, legs and also in my chest. Many symptoms associated with Parkinson’s are not visible, so it is incredibly hard to judge how much someone is really suffering. This is also why it is so important to tell your doctor everything you are experiencing, for again it is not plain to the naked eye what is really going on. The medications I am on seem to be taking care of the external tremors pretty well, but the internal tremors are a daily torture and reign supreme! 

No room for a wheelchair

We discovered the other day, much to our surprise that a standard wheelchair will not fit easily into the boot (in USA I believe you call it a “trunk”) of many regular sized cars. Realising this deficiency in the manufacturer’s design and the customer’s requirements and needs, we were astonished, and hence started our own personal survey. We took my wheelchair along to a car showroom, and tried putting it in the boot of several cars on show. To the amazement of the sales lady and us, only the very large cars had a boot big enough to accommodate my wheelchair. When reading the highly glossed shiny prospect of a new car, one’s mind boggles at all the intricate details and information they give the potential customer, but nowhere does it state if a wheelchair will fit into the boot! We have a relatively small car, and yet my wheelchair fits easily and comfortably into the boot, leaving the back seat free for passengers. Many cars we saw were larger than our car, and yet poorly designed as far as the boot is concerned, and no matter how we tried, my wheelchair would not go in. Maybe the English popular television programme “Top Gear” would like to pick up on this topic and bring it to the manufacturer’s attention, where Jeremy Clarkson I’m sure would do a grand job!

To a special lady

Since writing my book and daily blogging, I have had the honour to come into contact with some wonderful amazing people. I wrote this poem recently and dedicate it to a brave lady I have never met.

Wish I could bottle what I feel inside,

So you could be free, not have to hide.

Stay your wonderful self, be brave, let all see,

You have Parkinson’s, the same as me!

No one can help you, unless they’re informed,

Knowledge and awareness, ignorance reformed.

Open your heart, tell those who care,

Now enlightened, life’s easier to bear.

Knowing the truth, they’ll fully understand.

Caring souls will want to lend a hand,

I’ll say it again, in case you didn’t hear,

Don’t hide the truth, don’t live in fear.

Those who love you, won’t turn or run away,

But stay by your side, support you each day.

(Written by Elaine Benton 2012©)

Student doctors

I was contacted by a doctor who knows me, asking if I'd be willing to participate in a programme for student doctors to familiarize themselves with talking to chronic patients. I naturally said "yes" and talked for two hours answering their questions, meeting them several times and finally they accompanied me on a regular hospital visit to see what a chronic patient goes through. The hospital staff had been told in advance of their attendance, and every nurse, technician and doctor I saw that day took time explaining to the student doctors about each test, why and what they were looking for. It was an extremely long and tiring day, but the student doctors learnt a great deal from this experience. A copy of my book was given to them to read completing the picture of a patient with a rare chronic disease. This programme has been extremely successful and seen as an important additional learning exercise for new student doctors, which they hope will become a permanent part of the syllabus.

Rare disease

Despite Parkinson’s not having a simple blood test to make a clear diagnosis, the signs and symptoms are very well known and common to most doctors. Rare diseases by definition are not observed on a frequent basis, and a general practitioner (family doctor) cannot be expected to know every rare disease known to mankind. He may never have heard of a particular rare disease, let alone actually come across a patient suffering from one. How would he know where to start, what to look for, or which specialist he should send his puzzling patient to? It is unreasonable and unrealistic to imagine otherwise. When student doctors learn about Gaucher disease in medical school, there is simply one paragraph giving a rough outline of the disease, which is probably the only information deemed necessary regarding this particular rare disease. One day, the doctor may happen to come across a Gaucher patient and more than likely the only one he’ll ever meet and suddenly that one paragraph he learnt in medical school will suddenly take on great importance. 

Best Prognosis

Early diagnosis is vital with any disease, for the best prognosis. Treating a patient as early as possible can prevent permanent damage in some diseases; therefore time is of the essence. However many diseases have subtle and confusing symptoms often mistaken for other diseases and patients are misdiagnosed. Until a final diagnosis is made, the patient can experience much anguish and worry spanning months or even years. Not knowing what’s wrong, is probably the hardest part of being ill. Once a proper diagnosis has been ascertained, the patient can then begin the journey of acceptance, becoming informed and acquainted with symptoms and options regarding available medications. It is the unknown that is frightening and disconcerting.

Wearing a mask

A friend commented on “wearing a mask” to cover one’s pain or discomfort when in company, and thinking about it later that evening, I have to agree with her, that we all tend to “wear a mask” unconsciously at some point for various reasons. It is a form of self-preservation and a coping mechanism that I acquired when I was a young child. I remember all too well at the age of 11, suffering an acute bone crises (infarction of the bone due to Gaucher disease) and was hospitalised for two weeks. In those days, there was no treatment, and the doctors knew little about Gaucher and unfortunately I suffered agonising pain, not through lack of care on the hospital’s part, but simply down to a lack of knowledge. This is one of the drawbacks of having a rare disease; doctors knew almost nothing about Gaucher back then. Suffering from a rare disease makes life a little more difficult, and being special, may not feel great from the patient’s perspective, but in the eyes of the medical field, you are viewed as a challenge, an extraordinary case that they don’t come across every day, an interesting patient that spices up their day, and makes them put on their thinking caps. Thank goodness times have changed and things are very different for Gaucher patients today. I guess I'm someone who doesn’t do things by halves – when I do something I do it really well; having a very rare disease (Gaucher) and in addition a common disease (Parkinson’s), making my life interesting to say the least!