Crying

Crying is not a sign of weakness, nor is it a waving red flag indicating a person is depressed or that something is terribly wrong. Crying is a healthy normal outlet of emotions that in my opinion should not be stifled. I am not depressed and stay remarkably cheerful considering my complex health situation battling two chronic diseases, yet there are times that frustration or simply disappointment when yet one more thing at which I was once competent, is taken away from me by my disabilities. The powerful realisation that one’s life is changing and will never be the same again; accepting this without any sadness or tears would be extremely strange and abnormal. Occasionally, a memory can be sparked of a loved one who has passed, bringing one to tears; this too I believe is normal and acceptable. However, I strongly stress; if you are crying constantly over almost everything, then I urge you to please seek help. Suffering chronic disease and being disabled; there is no shame in needing and seeking professional advice, for a strong undeniable link between the physical and emotional aspects of ill health have to both be considered and treated where necessary.

Noticeable changes

If you are a Parkinson’s patient, have you noticed a change in your own character? I can’t find any information about this subject, and doctors don’t seem to make much of it, but it’s an interesting change that my family and I have noticed. I don’t know if it’s Parkinson’s or the medications – but there are definite changes. I'm still the same person I have always been; my fundamental core has not changed, but I'm talking of small changes that may seem irrelevant to the medical field, but to the patient are very noticeable. The first change I noticed was that my taste in clothes, bags and shoes had drastically changed. My taste in food has also been affected, and I prefer to eat simple meals; foods that don’t contain too many ingredients, and steer clear away from anything containing preservatives, colourings, flavourings or any other additives.  I was always afraid of speaking in public, and yet for the past year I have been speaking in front of audiences whether it be a couple of hundred people or more; the number does not phase me, and so focused on getting the message across by telling my story, I am not nervous and feel quite comfortable as if I have been doing this my entire life. Much to the surprise of my family I can now watch a horror film without covering my eyes and having nightmares for the following week. I have to admit that horror films are still not my cup of tea, but it is interesting that I am now able to watch without jumping off my seat or running into the other room. If you are a doctor who can explain these changes or a patient who is experiencing similar affects – I’d love to hear from you.

A cup of coffee

I used to love the wonderful smell of freshly brewed coffee, until Parkinson’s wickedly stole away my sense of smell. However I still enjoy the intense flavour of good coffee when made properly in an old fashioned percolator, that musically bubbles and hisses when almost ready; topped with hot frothy milk, now that’s how I like to start the day! I have found that coffee, (probably as it’s a stimulant) much to my regret, does not mix well with Parkinson’s, so I now restrict my intake of coffee to just one cup a day. If you could only see my breakfast regime that I meticulously stick to, I am sure you would laugh (or maybe you would understand perfectly for you have your own timetable and system!). I have at long last found the winning combination of when to take my morning pills, leaving enough time before eating, thereby maximising the effectiveness of the Dopamine (Parkinson’s medication). All this is trial and error and every person is individual, so what works for one, may not work for another. All I can advise is to play around a little with the gap between taking medications and eating (in particular protein) and if you find there are specific foods or drinks that make you feel not so good afterwards, you may need to restrict intake or even remove those food items altogether. An hour has now passed since I took my Dopamine, so I shall leave you here and have my breakfast with a cup of coffee.

Keeping hopeful

Reading the news, it is very encouraging to see that every so often a story appears, reporting on new research or clinical trials related to Parkinson’s and various similar diseases. With so much happening all over the world, it gives me hope that maybe we are not too far off from finding a cure, or at least a treatment that stops the disease from getting any worse. There is definitely greater awareness today about Parkinson’s and many people doing wonderful voluntary work, fund raising, running events for support groups and doing all they can to ensure the momentum continues, keeping this disease in the forefront of the media, encouraging the doctors, scientists and pharmaceutical companies to strive forwards in finding relief for the millions of sufferers around the globe. I am in the unusual position of suffering two diseases, Gaucher and Parkinson’s which puts me in a very small group, and from what I understand there may be only a few hundred recorded cases like mine in the entire world. Put together a rare disease and a fairly common disease, and a special category is created. Believe me; I would much prefer not to be quite so ‘special’ for apart from my late brother, I have met only one other person, who like myself has these two diseases. You may well have gathered, a support group for Gaucher patients with Parkinson’s does not exist!

Listen to your body

You know yourself better than anyone, but occasionally, like a horse wearing blinkers, only able to see what is straight ahead, we all need a loved one, someone who really cares, to point out things we may not be able to see. As a patient, seeing the entire picture isn't always possible and Parkinson’s, like so many other diseases, presents many symptoms and complex problems. Advice from those who are walking the same path, either as a patient or a caregiver, can offer invaluable insight. I was diagnosed five years ago with PD, and feel I am on a constant learning curve, always gleaning new information, tips and thoughts of how to improve my quality of life. There are sometimes people that know nothing about PD but simply want to give advice, so I politely listen, and only take note of input I consider worthy. My spirit still feels young, able to battle and conquer anything, yet my body is not willing, and try as I might I cannot keep up the pace I have been running at during the past year. The most important thing to me is my family and friends, whom I hold dear, and I want to be here for them. So I have made a decision to cut back on some of my activities that have spiralled into a sort of crusade since my book came out. I will continue to write my blog, for I know this is being read around the world, and I shall complete writing my third book which I am three quarters of the way through writing. I think we all have to make decisions in life to focus on what is important, and where ones energies and time are best spent. Being in hospital recently was a wakeup call for me, so my blinkers are off and I can see the entire picture much clearer now.  

A hard task

Being a caregiver is probably one of the hardest tasks I can think of. To stand by helplessly watching as this rotten disease grabs hold of a loved one, is a heart-breaking role to play. Trying to comprehend and understand what someone is going through on a daily basis is far from easy. Accepting this unexpected and uninvited position in life, which changes plans for the future and throws everything awry, yet being able to continue loving unconditionally whilst caring for a spouse who’s suffering a degenerative disease takes great heart and shows immense dedication. Today is the birthday of a brave lady who in difficult circumstances found great inner strength, courage, loyalty and showed true grit. The heroic lady I speak of is my sister-in-law who tirelessly cared for my brother until he passed away. I am sure that many people, although not knowing you personally, have walked in your shoes and would want to join me in wishing you a happy birthday and hope that today you are doing something special that you enjoy. My thoughts and love are with you.

Cabin fever

When one is disabled, chronically ill,  or simply unwell for a prolonged period of time, the four walls of one’s home can start to close in; looking at the same view day in day out gets a little tiresome, no visual stimulation, isolation and a feeling of claustrophobia sets in, or as some would call it: “cabin fever”! It is vitally important to have a small outing now and then, to spend a little time outside the confines of one’s own home. Even just a trip to a local café can save one’s sanity and leave one feeling almost refreshed. It’s a fine line to tread, staying active and busy, whilst taking care to rest and not over do things. I plead guilty to “do what I say and not as I do”, for in recent weeks, I have overtaxed myself, and am now paying the price. I was given some very sound advice the other day from someone whose husband had Parkinson’s, and therefore understands all too well my current condition. I realise that I have done too much and must now take things a little easier, slow down and get lots of rest. Realising ones limitations and ever changing circumstances with a degenerative disease and coming to terms with a lifestyle change are all part and parcel of any chronic disease.

An old fashioned girl

If you have been following my blog, you will be well aware that I love to write and read books. I'm an old fashioned girl at heart and enjoy holding a book in my hand; feeling the paper beneath my fingers, turning each page, there is something very comforting and tactile in reading a book. With today’s technology, there are so many ways to enjoy reading without actually killing a tree! but despite being able to see the immediate advantages of an electronic book reader, I still prefer an old fashioned paperback book. For over a week I have been in terrible pain and lost the use of my right arm and hand rending me pathetically incapacitated. The smallest of tasks becoming quite difficult and even trying to read a book is very hard when you have only one hand. This is where an electronic book reader really comes into its own. Being light, thin and easy to hold or prop up in bed, turning the pages becomes a cinch and making the print larger so that I can comfortably read without straining my eyesight is a pleasure. I don’t think for one moment that this marvellous new technology will ever replace the book entirely, but it certainly captures a market and is becoming increasingly popular. Not having use of my right hand at present, when hooked up to an i.v. the other day in my good hand, I was suddenly left with no hands at all to hold a book or turn pages, so clearly anyone who is bed bound, hospitalised frequently or disabled in some way – one of these reading devices would be of great help.

A taboo subject

One of the many symptoms of Parkinson’s and probably other diseases too, is constipation. I can’t believe that I'm actually writing about this – but I know that fellow sufferers are reading my blog, and I feel this problem needs to be addressed. If you have Parkinson’s, you will be able to relate to what I am saying, and probably thinking “thank goodness someone’s talking about this at last”. It appears a taboo issue – too personal – too intimate and just too darn embarrassing to talk about. Yet here I am, writing about this very common problem that affects so many millions of people in the world. It is not to be made light of, as it can be deeply troubling, a constant problem, uncomfortable and even painful.  Some Parkinson’s patients experience constipation due to the improper functioning of the autonomic nervous system, which is responsible for regulating smooth muscle activity. If this system is not working properly, the intestinal tract may work slowly thereby causing constipation. In addition, various Parkinson’s medications cause constipation, and it is a well-known fact that strong pain killers are also a contributing factor. Add into the equation a lack of mobility and exercise and this problem becomes magnified. Everyone has their own way of dealing with constipation; be it laxative pills, eating porridge (oats or bran) for breakfast, adding extra roughage to one’s diet, drinking more water and exercising as much as one can. I hope that speaking frankly is of help, and you realise that you’re not alone!

Describing pain

Many people when asked by a doctor “what does the pain feel like?” are baffled by this seemingly redundant question, as if the doctor should automatically know what the pain feels like. A doctor has good reason to ask, but sadly often patients are unable to describe in words or express the pain and how it manifests itself. However, there are many kinds of pain, and the varying types can indicate what is actually happening, giving a good indication to the doctor, where to start from, which tests to run and what the diagnosis is likely to be. Having lived with pain my entire life, I am an old hand at describing the pain I am in. Pain is very tiring and wearing, and being in pain constantly for the past 7 days, I am exhausted. The sharp throbbing doesn’t let up, and when I move my arm, the sharpest of pain pierces my arm making me gasp for breath. Of course everyone’s idea of pain is different, and the pain threshold can vary considerably – there are no standards or guidelines to follow, pain is individual and everyone reacts in their own way. Being born and growing up in England, my British stoic nature often confuses doctors, for they do not realise how bad the pain is and to what extent I am suffering, therefore communication with your doctor is of the utmost importance.

Meals on wheels

Having good friends who at a moment’s notice will drop everything to lend a hand is a friendship not to be taken lightly, but cherished and appreciated. Turning up at our house, friends arrived with “meals on wheels”, our kitchen suddenly became a flurry of activity, everyone doing something, except yours truly, and as quick as a flash, a wonderful meal appeared on the table. Gestures like this, that are made straight from the heart, without fuss or debate, knowing I am unable to cook or prepare any food, and realising my husband and daughter both working, are gratefully welcomed as circumstances are understandably a little difficult in our household right now. Instead of saying “call us if you need anything”, to which I would  never pick up the phone, since I hate asking anyone for help, they took it upon themselves to simply act, offering the most practical help they could think of. If you have family or friends who you know are in need of help (for whatever reason), don’t wait to be asked, just roll up your sleeves and help in whichever way you feel will be most appreciated.

Severe pain

I have been in severe pain for several days, unable to use my right arm or hand at all. I have been writing my blog laboriously slowly using one finger on my left hand. Frustratingly I cannot dress myself, cook, or do almost anything independently at present. How do I continue through such periods? I count my blessings, and think of all the wonders that life holds. Life is precious, and as poorly as I am right now, I remind myself of what makes life worth living. There is nothing more beautiful than the innocent contagious laughter of a young child, or the endearing toothless grin of an elderly person who may no longer remember your name, yet still has a mischievous twinkle in their eyes reminding you of the person they once were. I love the thrill of the first rain, refreshing the garden washing away all the dust. Who doesn't love the cheerful sound of a champagne cork popping and glasses being filled to celebrate some happy occasion? The delicious taste of dark chocolate as it melts in your mouth. Watching a sunset over the sea, glorious colours glistening across the water that are simply breath-taking. The voice of a dear friend on the other end of the phone letting you know they’re thinking of you. Receiving a bouquet of flowers and the pleasure they bring every time you look at them. Have you ever had a kiss that made your knees go weak? Or made love on a rainy afternoon that leaves you smiling like a giddy teenager all the following day? My heart is warmed by a certain look my husband gives me and only me, that speaks volumes. These are some of my favourite things. Having brunch yesterday with some friends, who although we have known just a short time, its as if we've known each other for years. Sometimes you meet people who you simply "click" with, and it was wonderful to spend time in their company and we are never short of conversation. I was naturally very tired afterwards, but I was able to rest in the afternoon, and I know that I’ll get through this period, my shoulder will heal, and life will continue.

Frequent Flyer

I said to someone recently about being a “frequent flyer” of hospital visits, to which she smiled, knowing full well what I meant. Anyone who has gone through childbirth remembers fondly, that in the 9^th month, a small bag packed with essentials would be ready so that at a moment’s notice, all one had to do was grab the bag and aim straight for the hospital. I'm not pregnant, but I do have a little bag that is packed at all times, sitting at the back our wardrobe, with all essentials should I suddenly be hospitalised. This may sound a bit absurd and overly organised, but with much hospitalisation experience under my belt, it saves a lot of time and I know I’ll have everything I need with me. I guess I never grew out of being a girl guide, where our motto was “always be prepared”! However prepared I try to be, one can’t plan for every eventuality, and I most certainly didn't envisage being unable to use my right arm. I hope this is only a temporary situation, lasting a few days, for the thought of being incapacitated even further would be devastating. I’ll have to be patient and take each day as it comes, and remain positive and hopeful that this episode will soon be behind me. I wish you all a good weekend.

Read and relax

There is nothing I like better than perusing at leisure a bookshop with rows upon rows of tempting books. Better still are the book shops which have a café on their premises, what a wonderful combination of simple pleasures. Sitting in a comfortable armchair feels familiar and welcoming like an old friend, as I ritually run my hand over the latest book purchased. Opening a new book the spine creases as I begin to read, turning each page, crisp clean paper beneath my fingers, I am filled with anticipation of what lies within. If a book is good, I lose track of time and my surroundings fade as I am immersed in the story. I think anyone who loves reading will agree that as you near the end of a great book, you almost don’t want it to finish, wishing the experience to continue just a little longer. I was a ferocious reader, but in recent years, my concentration levels have diminished and my eyesight is not good - thanks to Parkinson’s! making it a tremendous effort to read a long novel. I am sad to say that I now stick to reading shorter stories, but continue to write like there’s no tomorrow!

A long day in hospital

Yesterday we spent a very long day in hospital, arriving at the emergency department around 02:30! I had the most excruciating pain in my right shoulder, and when I found that even my strong painkillers wouldn't dull the pain, we decided to head for the hospital. The nurses and doctors are quite remarkable, and with an onslaught of emergency cases, they were under a lot of pressure. Thankfully it turned out to be inflammation in the shoulder joint and although terribly painful, hospitalisation was not necessary, so I was sent home with prescriptions and my arm immobilised in a sling. It will take a few days to recover, and I must learn to take things a little easier. Thank you everyone for your concern and good wishes. I hope you’ll understand and forgive me if I don’t write back thanking you all individually, but typing with one finger on my left hand which is most effected by the Parkinson’s, is not an easy task. Sometimes I'm my own worst enemy, trying to do too much; I need to take some of my own advice and slow down the pace. 

in hospital

Well this is an unexpected first, here I am writing my blog from a hospital bed! I was taken to emergency in the early hours of the morning with excruciating pain in my shoulder that even my strong painkillers would not bring any relief. I am still in emergency and waiting for the doctor. Looks like they will have to do a scan to assertain what is really going on. Blogging from Rome was much more fun than from a hospital bed, but as I have mentioned before, this hospital is like my second home, and I couldnt be in better hands. I wont write more today, but sincerely hope you are having a better day than me!

The need for rest

Knowing when to rest and listen to your body is terribly important. With all the excitement recently of speaking at a Congress in Rome, I have been running on adrenaline, and finally yesterday it was as if someone had removed my batteries. I knew this would happen, and will have to be patient now, rest as much as I can, take things easy and regain my strength. I met a lady in Rome, who like me, possesses the ‘happy gene’, and despite her being desperately ill, having many operations and spending much time in hospital, no one would ever guess how very ill she is, simply by looking at her. She asked me how I deal with this issue of not being understood. I told her that I had exactly the same problem; having a cheerful attitude and not making a fuss, totally confuses people, especially doctors. I shouldn't have to go around with a label stuck to my forehead informing everyone I'm chronically ill despite the smile on my face, or have to moan and wear a sad expression so that all would understand how ill I actually am. It is far better emotionally / psychologically and healthier to be positive and cheerful, not just for myself, but for my immediate family, friends and all those around me. It wasn't until I wrote my book of poems, that those who know me realised and understood what I go through on a daily basis. It’s a bit of a conundrum; appearing happy gives the impression I am well, yet I refuse to go around with a long face simply to ensure people realise my real situation.

Meeting someone rare

Meeting a person who is in the same shoes who understands completely what you are going through is a wonderful feeling. I was very fortunate to meet someone recently suffering from Gaucher and Parkinson’s, and feeling almost as if I had suddenly found a long lost cousin, there was an instant connection between us. As soon as I described the pain, discomfort, difficulties, hopes and worries, I barely had to finish my sentence before realising for the first time in my life; I was sitting with someone who had the same two diseases as me and knew what I had been through. To put into words what I felt, even for me, is difficult. There are not too many patients in the world who have both diseases and the comfort and supportive feeling I experienced, finally meeting another person who walks in my shoes, wearing two hats; I am definitely no longer alone. Due to privacy laws, doctors and hospitals understandably cannot put patients in contact with each other, despite the huge benefits that can be gained for both patients and their families. Sometimes one has to wait a very long time, to find each other, be it by chance or an introduction through a third party. I am so grateful to those who brought us together and thank you for this special unexpected connection.

The “happy gene”

I had four wonderful older brothers. Sadly two have passed away, and are always in my thoughts and very much missed. I am grateful to still have two brothers, but this morning I want to tell you about one particular brother who shares my fate in being born with Gaucher disease. Just thinking about him, immediately brings a smile to my face. He has a youthful spirit, a contagious laugh, smiling eyes and is an incredibly brave man who suffers greatly from ill health, yet remains dignified and composed. We both express ourselves through different mediums; I love to write and my brother draws and paints. He is an incredible artist and extremely talented. You only have to meet my brother once to realise that he also possess the “happy gene” that I have spoken of before. The “happy gene” of course does not really exist; it is merely a phrase that I have coined to describe the incurable cheery positive personalities that my brother and I possess which cannot be extinguished or doused. No matter what circumstances we find ourselves in, the two of us always manage to put on a brave smile, baffling the doctors and those around us with our British dry sense of humour and optimistic attitude. This “happy gene” is our secret weapon to get through life. 

Wearing two hats

I am in the strange situation of wearing two hats – one for Gaucher and one for Parkinson’s disease. I have often been asked which disease do I suffer from the most. This is difficult to answer. I would have to say on a daily basis, Parkinson’s is much more debilitating and as it is a degenerative disease, medications have to be constantly changed or doses altered. However, when Gaucher decides to play havoc with my bones, the pain can be extreme, occasionally requiring hospitalisation, receiving morphine to dull the agonising pain. Thankfully since I have been on enzyme replacement therapy (VIPRIV) these events have occurred less. When suffering from a chronic disease or two! a sense of humour is so important – without this I don’t know how I would get through the tough times. Laughter they say is the best medicine, and sometimes life can get so difficult and become absurd, that you've got to laugh! If you would like to take a look at one of my poems entitled “ You've got to laugh”, it has been put up on LadybugflightsBooks Website. In my recent oral presentation which I gave in Rome, I said "There's a silver lining in everything, you've just got to know how to see it." I wish you all a good weekend, and hope you can see your silver lining!

Routine treatment

Now we've returned home, immediately falling back into regular routine, our trip feels like a dream. I sit here this morning typing today’s blog entry with one finger, which is taking forever, having little else I can do right now, since I'm hooked up to the i.v. receiving the VIPRIV medication for Gaucher. The delightful nurse, who always wears a smile, arrived bright and early at 09:00. With years of experience under her belt, she skilfully slips the needle into my vein, without me feeling a thing. Although this is her paid job, I have to tell you, she is a wonderful lady who really cares about the patients she looks after and goes above and beyond to help as needed. When treatment first became accessible for Gaucher patients, the enzyme replacement therapy was only administered in hospital, but for some years now, thankfully “home treatment” has been made available, improving the patient’s quality of life drastically, by spending fewer hours in a hospital environment. The only problem is, now that I have Parkinson’s too, sitting still for an hour and a half whilst the infusion drips the lifesaving drug into my veins, is difficult to say the least. Gaucher and Parkinson’s – what a combination!

Back Home

It is good to be back home and sleeping in our own bed. As the old saying goes “there’s no place like home” – although I have to say “there’s also no place like Rome!” Italy is a beautiful country and well worth a visit. It will take me a few days to recover from this trip. Travelling abroad isn't easy for me; although we took my own wheelchair making things as comfortable as possible, and we booked in advance through the Airline for “Special Assistance”, the journey was still very gruelling. Most international airports are so large, requiring a lot of walking, not to mention standing and waiting in line, I couldn't travel without this necessary help.  My body feels exhausted, and I am depleted to the extent that it’s hard to function. It always takes me several days to get over a journey like this, and I will try to take it easy for the rest of the week. Our darling daughter came to pick us up from the airport and it was very good to see her smiling face. Walking into the house, we were greeted by our devoted dog whose tail wagged constantly like the metronome on a piano, and "welcome home" signs, along with beautiful pink flowers in vases everywhere. It was a most memorable trip; a great honour to be invited to speak at the Congress and I thank all those involved who must have worked hard ensuring its success. I met some amazing people, with great minds and innovative ideas, all striving towards a better health system marrying the current health system along with narrative medicine. I was fortunate to get a little taste of an incredible country that I had long dreamt of visiting, and I am so very glad we went enabling me to be represent Gaucher disease from a patient's perspective. 

Returning home

These past few days have flown by very quickly, and here we find ourselves packing our cases and heading for the airport. It has been the most amazing once in a lifetime experience and one I shall never forget. I am only sorry to be leaving Italy so soon. A few days are not enough to thoroughly take in and see this wonderful country with such warm welcoming people. Having never been to Italy before there was so much we didn't have time to see, we will have to come back for a longer visit.Every building, window or arch are richly decorated with stone carvings or paintings and one merely has to look down any street here to see the magnificent art that is there right in front of your eyes, like a permanent display of an era long ago when a city such as Rome took to heart the meaning of beauty. The Congress was well organised, it was great meeting everyone, and I thank them for the invitation, affording me the opportunity to give an oral presentation. This trip and in particular yesterday, will remain a firm wonderful memory. I am so fortunate to have a loving husband who supports me in all I do. As I said in my presentation, "there's a silver lining in everything, you've just go to know how to see it!" 

My Presentation

This morning we arrived early at the Italian Institute of Health and at 09:00 entered and registered. We were warmly welcomed by the organisers with whom I have been in e-mail contact with for several weeks now, so it was nice putting faces to the names. Wearing our tags we were ushered to reserved seats in the front row as slowly the lecture hall filled up. We were given simultaneous translation headsets, although much of the Congress was in English. It was a pleasure to finally meet Prof. Brian Hurwitz, and sitting next to him, I soon discovered what a charming man he is. Hearing his opening lecture, there was a connection between his talk and mine as he spoke about Dr. James Parkinson's powers of observation which lead him to writing an Essay on the Shaking Palsy in 1817 which was later named (Parkinson's disease). It was then my turn to talk, and without hesitation or feeling nervous, I went up onto the stage, and spoke for 15 minutes. Unlike most speakers there today, I didn't read my presentation, for I particularly wanted to speak straight from my heart, which I believe captured the audience's attention. Right at the end of my 15 minutes I read a shorten version of the very last poem in my book "This isn't the end, there's always tomorrow". There was a burst of applause, and then five extra minutes, where several people asked questions. During the morning break, and at the lunch break it was a great opportunity to mingle with all the other guests, who were mostly doctors, professors, academics working in the medical field, and a few patients representing various diseases. I was there fundamentally to represent Gaucher disease, a rare disease, although naturally I spoke about Parkinson's too as this is part of my story and what prompted me to write my book of poems. We are now back in the hotel and thought I would let you all know that it went very well indeed. It has been a long day and I am very tired, but extremely happy and satisfied at how successful today was. This congress was tailor made for me; Narrative Medicine and Rare Diseases - to narrate by telling a story is one of the things I do best, and I certainly qualify for the rare disease part! A room full of prominent people in the medical field today got to hear about Gaucher and Parkinson's disease - mission accomplished!

Congress for Narrative Medicine & Rare Diseases

Last night we had an early supper, after a restful day, ensuring that I should be fresh for my presentation . Today is the day, and we got up bright and early, and had a robust breakfast. We’ll be taking a taxi to the Congress, and shall arrive there a little early, so that we can meet the organisers, and see the room where the lectures will be taking place. I don't feel nervous, but am very excited to be here and taking part. Registration is at 09:00. Participants will be welcomed at 09:40, and at 09:55 there will be an Introduction. Following this at 10:10 the renowned Prof. Brian Hurwitz will speak (who is from England), after which it is yours truly. I will be speaking at 10:55 for 15 minutes with a further 5 minutes for questions. There are a number of interesting speakers throughout the day, a break naturally for lunch, several poster presentations and the Congress will come to an end at 17:00. I will write my blog later night and let you all know how it went. Thank you everyone for all your support and messages of good luck. I almost feel you are with me in spirit. Arrivederci for now!

When in Rome

Yesterday we took a taxi to the beautiful Trevi Fountain, that draws tourists from all over the world, and throwing a coin into the water, I made my wish. Many of the streets are crowded, narrow cobbled - most unsuitable for a wheelchair. Last night from our hotel room we could hear the bells peeling from the Basilica. The unfamiliar sound enchantingly pierced the night, resonating throughout the streets. As we sat at a little cafe in the evening near our hotel, (and I hope my doctor isn't reading this!) I had a Cappuccino gelati for dinner! I said I would have ice-cream for a friend - and I kept my word, in fact I kept it so well, I had another one today for good measure! And if you are wondering - yes it was delicious! As we sat there, a man playing the accordion added to the atmosphere, and holding my husband's hand, it was a feeling of pure joy. There are moments in life when simple pleasures or a fleeting moment is so intense and unforgettable, that you wish it would last forever. Although we had checked the hotel had a lift, it did not occur to us to ask if the lift would be large enough to accommodate a wheelchair. Who would have thought that a lift would so small, that my wheelchair had to be folded to fit inside. I have never seen a smaller lift in my life before! Insomnia like an unwelcome stowaway has followed me to Rome, and here I sit in the early morning hours when probably even the hotel kitchen staff haven't started their day. So I guess no matter where you 'roam', Parkinson's symptoms tag along too! I thought I would be tired and able to sleep, but no such luck. I have to tell you about the bathroom - for it is decorated so ornately, with gold swirling moulding, black and white marble tiles; giving one the feeling of being in a Roman palace. Standing in this grand opulent decor in my simple cotton pyjamas   brushing my teeth, I almost feel under-dressed! Despite all these wonderful distractions, I am here for a purpose, to represent Gaucher patients and to give my oral presentation on "Writing and Therapy". Being invited to this Congress feels like the culmination of my efforts over the past year; writing my book of poems, blogging each day, writing back personally to each and every one who has contacted me, public speaking bringing greater awareness to both Gaucher and Parkinson's, and taking part in a new programme to familiarise student doctors with chronic patients. Tomorrow is the big day, so today I will rest and we'll take things very easy.

Make a wish

Yesterday we went to see the Sistine Chapel. Booking ahead of time on-line through the Internet to avoid having to wait to get in, we were very impressed by how wheelchair friendly they had managed to make such old buildings. We did not do the entire tour, as this would have been too much for me, so went in by ourselves and saw what we wanted to. The staff there were very conscious of wheelchair assistance, and were extremely helpful. No photos or footage seen on television can do justice to the incredible art that adorns every inch of ceiling and walls in the Sistine Chapel. I was literally lost for words - and trust me, this doesn't happen very often! I have done very little travelling in my life, and not had the opportunity to visit many countries, so I am taking in and appreciating every detail. Soaking in the warmth of the Italian people; the simplicity of their delicious culinary triumphs, breath-taking architecture which combines both great art and history, it is a writer's heaven, for inspiration lingers at every turn we take. I hope I am able to relate to you the beauty of this place; the sheer joy I feel at this moment. Life sometimes takes us to places most unexpected, and here I find myself in an extraordinary city that I have always dreamed of visiting, but didn't think I would ever get to see. So maybe dreams do come true. When I throw a coin into the Trevi Fountain tomorrow, my greatest wish will be not just for me, but for all fellow sufferers across the world. One isn't supposed to reveal one's wish, so I won't tell you what it is, but I think you can guess what I'll be wishing for.

We’ve arrived

Peering out of the plane window I can see Italy below, mountain peaks reaching up to greet us. Tiny houses and roads started to appear; scattered hamlets, then larger towns coming into view. White fluffy clouds hung in mid air; my ears began to pop as we began our descent. A patchwork of fields and crops varying in shades of greens adorn the countryside. Lower and lower, now able to actually see cars driving along roads, the roar of the engines increased as we slowly came in for a gentle landing arriving at Rome's airport. We arrived safe and sound in Italy.The flight was very good, and we arrived on time, being met by a charming Italian driver, who took us on a wonderful detour to our hotel, giving us a glimpse of a few magical historical sites that Italy holds in store. Here I sit writing to you from our hotel that is situated not far from where the Congress is being held. The architecture and buildings everywhere you turn have something of interest. Many streets are cobbled (and not suitable for a wheelchair) but beautiful and every little street holds a charm of its own.  I can hardly believe that we are here. I love art and since a child have dreamt of seeing the Sistine Chapel, so my darling husband, who is intent on making as many of my dreams come true as he can manage, has arranged a tour this morning. There is special access and lifts available to those in wheelchairs, and booking in advance to alleviate waiting in line, there shouldn't be a problem. I shall leave you here, and catch up with you later.