Midnight Muffins

The other night we had the most wonderful evening with good friends who had invited a charming couple we'd met once before. The husband and I share much in common; yes you've guessed correctly - we both live with Parkinson's. We naturally compared symptoms and medications, which must have bored the pants off the other guests, but when a Parkinson's patient meets another, these questions are almost mandatory, feeling akin and understanding one another is of great comfort. Like many of us, I found that this gentleman suffers from insomnia. Most who endure this irritating, not to mention debilitating symptom, find something of interest to do with these hours in the middle of the night, when we'd rather be tucked up snugly in our beds blissfully asleep in the land of sweet dreams.

I write in the middle of the night, and sometimes my best writing is done in the wee hours of the morning. I discovered that this gentleman bakes in the middle of the night, and after tasting his ginger biscuits that were divine, (one biscuit was simply not enough!) he has become quite the baker. His wife often wakes in the morning to the delightful smell of freshly made home baked goods, maybe some midnight muffins; how great is that? Although his wife protests at the calorie filled goodies one could do without, it's hard to refuse tempting treats that have been whisked up in the night. In my eyes, she was a vision of beauty and need not worry of an extra pound or two. The warmth and love they exude clearly demonstrate how a husband and wife can battle Parkinson's together and prevail the difficulties they incur along the way.

Sitting on my other side was a gentleman from Australia, and after he heard a little of what I have been doing for the last few years, he asked if he said something of interest, would he end up finding himself in my blog? Well - the answer is "Yes". He asked me a very pertinent question, "Do I receive payment for articles I've written for The Huffington Post or other newspapers or magazines?" The answer is "No". I don't get paid for any articles and my public speaking is done voluntarily, although if far away, or abroad then travelling expenses are covered. He then went on to ask if I make any money from my website and blogging, to which I again said "No". I've had companies in the past asking if they could pay to advertise their various products on my website, and although they have mostly been related to ill health or disability in some way, I have keep a strict policy of not accepting any, for I don't want my website smothered in adverts. The only recompense I receive is if someone buys my books, but after Amazon handling fees and taxes have been deducted, this small amount is enough to buy a cup of coffee! Of course I would be thrilled to sell more books, and the modest income would no doubt be of great help, but I'm not running a business or an advertising campaign. My main objective is to offer support and reach out to fellow sufferers, caregivers and doctors in the field, along with bringing greater awareness as an advocate of Gaucher and Parkinson's.

Parkinson's isn't sexy!

Parkinson's is about as sexy as a pair of warm flannel striped pyjamas or long thermal underwear. The other night as I was getting ready for bed, catching an unfortunate glimpse of myself in the mirror; to say I was shocked would be the understatement of the year. Who was that hunched old lady staring back at me through the mirror with a glazed expressionless face, and aching arms that hung limply at her side? Of course I knew it was 'me', but the transformation that has occurred over the last few years is a hard pill to swallow.

When I last had a haircut, finding it difficult to describe what I actually wanted, I took with an old photo of myself to show the hairdresser the cut I had in mind. The young man looked at the photo and asked "Who is this?" It was at that point, I realised my idea that had appeared so good at the time, now seemed ridiculous, as if I was asking him to miraculously turn back the clock and work magic with his scissors restoring me to my former self. I sheepishly answered "It's me". He looked amazed and did a double take, staring long and hard at the picture and then back at me, not quite sure what to say next. But the very obvious question quickly followed, "How old were you in this picture?" Now I felt like I wanted the floor to open up and swallow me. Why on earth had I brought along this picture, when my hair, now turning grey and wiry with a mind of its own, probably couldn't be sculptured into the style I once had and that suited me so well. "I was 28" I muttered under my breath, as I caught an incredulous glance on my hairdresser's face, clearly dubious he could recreate what I had asked for, and probably thinking "Wow is this lady in denial, or what?"

The hairdresser did the best he could, and the cut was very nice, but that night as I went to bed, the same old lady stared back at me through the mirror. I have come to the conclusion it doesn't matter what hairstyle I have, nor if my nightwear is lacy and risqué, I still look as thrilling and appealing as a cold shower on a chilly night! Parkinson's is definitely not sexy!

The 7 Year Itch

When I look back over my life, which has been far from easy, it's hard to imagine that I've made it this far. Everyone has heard the phrase "The seven year itch", which is often used as a psychological term suggesting unhappiness in a relationship. A fitting term for I've lived with Parkinson's for seven years now and a bigger "itch" I have not come across. If only it were that easy to scratch long and hard enough to separate myself from Parkinson's. I've reached the point of being annoyed at living with Parkinson's, its debilitating symptoms that constantly get worse over time, the cocktail of medications I find myself taking each day and the loss of quality of life.

However, there is always the other side of the coin, and since being diagnosed seven years ago, Parkinson's has changed my life almost beyond recognition. I've experience and done things I would never have imagined or thought possible. Although I would love to say goodbye once and for all to Parkinson's, strangely living with this progressive disease, it has given me opportunities and allowed me the freedom I did not dare grant myself before. Its almost as if Parkinson's gives me the authority to let my hair down and not worry about what others may think. I don't have to put on the graces, I can simply be "me".

Feeling comfortable with who I am, confident and willing to take on any new challenges that present themselves, opens up a whole new world. No one knows what tomorrow will bring or what lays in wait for us, and therefore living in the moment and making the most out of each day is my mantra. 

Waning Appetite

I am not entirely sure if my waning appetite is due to the many medications I take, or Parkinson's disease itself. Maybe it's a combination of both. What I do know, is that I'm not alone in this predicament, and although I fully realise and understand the importance of eating a healthy well balanced diet, there are not too many foods that tempt me to eat. I almost have to force myself to eat, knowing how easy it would be to skip meals, a dangerous road to travel down, for once the stomach gets used to receiving less food, it's a dangerous slippery slope to losing weight rapidly (and not in a good way).

We all want to look our best, feel good and fit comfortably into our clothes, for there's nothing less appealing than someone who spills out of their garments. Getting rid of those extra pounds that irritatingly wont budge from certain areas, we might have gained whilst on holiday, or simply too many visits to the fridge for a little snack when you think no one is watching, is not the kind of weight loss I am talking about.

I am addressing the issue of having no appetite for foods that would once have appeared tempting, but no longer arouse or motivate one to eat. I often have difficulty in swallowing just my own saliva, so the thought of struggling with a mouth full of food does not enthuse me in any shape or form. Foods that are easy to swallow such as yoghurt, ice cream, a latte coffee, cheesecake, hot chocolate soufflé or a bowl of hearty chicken soup with noodles seem to fit the bill. However if I were to live on this delicious yet limited menu, I don't think it is the "well balanced healthy eating plan" my doctor was talking about.

If you are in the same situation as myself, I hope you'll endeavour to eat well. Just like you put gas in the car to keep it running, good healthy food is the fuel that keeps our bodies going. The sun has now arisen, and I will go and put some coffee on, so I will leave you here for today.

Parkinson's Stains

With shaking hands, unsteadily holding cutlery, hoping and praying that I don't drop food down the front of my clothes leaving stains, eating in public is sometimes a nightmare. Going to a restaurant used to be such a treat and enjoyable experience. I'd look at the menu and peruse all the appetising dishes, choosing something that I would not attempt to make at home. Today is a very different matter, for when looking at a menu, my first thought is how easy will this dish be to eat? Anything that involves spaghetti, linguine, couscous, peas, or a steak on a bone that requires great dexterity to dissect, I immediately eliminate, as they will be difficult for me to eat.

I always carry wet wipes in my handbag, have done for years, but originally began due to owning a dog who has the nasty habit of drooling and using the nearest person as a towel. I can't begin to tell you how many times I have apologised to complete strangers for our dog smearing her slimy goo on their attire. I began to notice when family came to visit, how they would dress down, knowing full well our darling canine, without doubt would leave her mark on their clothing. Wet wipes thankfully remove the unfortunate and embarrassing daubing.

I don't know what is in wet wipes, but the chemical or secret ingredient they contain is magic indeed. Now I carry these in my handbag (individually wrapped ones) for if I spill anything on my clothes when out, these wonderful wipes usually remove most stains immediately. If you have Parkinson's, a small piece of advice, is to always carry wet wipes with you when going out!

Life is not a rehearsal

Life is awfully short, and rarely turns out as we'd planned. As we grow older, time appears to speed up somehow and the years fly past. Life is not a rehearsal, so don't waste a moment standing in the wings waiting for the perfect moment to act. Grab your script and if you lose your lines, improvise, adapt to your changing circumstances and live in the moment. Parkinson's may grab the audience's full attention and remain centre stage, but if you don't let it get the better of you, you'll receive a standing ovation from those who love you. Make the most out of each day, stop what you are doing to give your children the full attention they deserve, if you can manage to steal an extra kiss from your spouse then sneak one in. Make each moment count and stay positive. Instead of thinking about the things you don’t want, such as Parkinson's, (and I can't think of anything I want less than this!) concentrate on the things you do want, and be grateful for the blessings we often take for granted. Having no regrets is the finale we all wish for, and if fortunate to be given an encore, grab it with both hands. Don't let any chance of happiness pass you by just because you suffer from ill health. Make the decision to be happy, optimistic and hopeful. If you are still rehearsing; stop and get your act together for life is not a rehearsal, the show must go on.

My weekly article for The Huffington Post entitled "Weathering Parkinson's" is up on-line if you'd like to take a look. Wishing you all a lovely weekend and good health!

A Moment Of Silence

It is not yet light outside and the hour is early; not even a bird can be heard or seen. I awoke with one person on my mind and it is with great sadness I sit here writing this morning. Unfortunately yesterday, someone I knew personally, who bravely battled Parkinson's for some years, passed away. It doesn't matter what age a person is, it's always too soon to lose a loved one and our thoughts and prayers are with his dear wife, who lovingly cared for him, and his family and friends. My husband and I send our deepest condolences to the family and hope that they are given grace and strength during this difficult and sad time.

If you are reading my blog, you may suffer from Parkinson's, are a caregiver, or live with another chronic illness. Please join me in a moment of silence, for although you may not know this man, you no doubt understand the journey he and his family have endured. He was someone's husband, father, brother, friend, and will be sorely missed by those who loved him. May he now rest in peace, and be fondly remembered.

Meditation

Learning how to relax is important for one's emotional well-being, and particularly when living with Parkinson's, avoiding any stress or anxiety is very important. Those who meditate always look so calm and serene, I thought meditation would be a perfect addition to bring some tranquillity into my life, but let's be honest, can you imagine anyone with Parkinson's being able to sit still?!!! Nevertheless, I thought I would give it a try.

I once attended a class in the hopes of learning how to switch off my busy brain, clear all thoughts and meditate. There were 8 ladies in the class and with eyes closed, we listened to the teacher who in a calm pleasant tone, talked us through a scenario, a story of sorts. At some point in her account, she told us to open the imagined door that we saw before us and told us we would see something of meaning or importance. I opened the imaginary door in my mind, but I saw nothing before me; I felt nothing, and before I knew it every day thoughts started flooding my mind. I opened one eye to peek at the others around me. All the ladies still had their eyes closed and were immersed in meditation. After a few minutes we were talked gently back to reality and told to slowly open our eyes. The teacher went around the room asking each of us what we had seen behind the door. Everyone had seen something, except me. 

I have never been able to master the art of meditation; my mind is too full of lists of things to do, articles to write, ideas and thoughts and that last item I forgot to put on the shopping list!  I have a mind that is far too busy to turn off and think of nothing. The teacher seeing I was upset and quite frankly a little humiliated at being the sole person in the group who could not meditate, asked me what I like to do. I told her my hobbies and when I mentioned gardening and how I often lose track of time out there as I de-head the roses or geraniums, she told me that this is my form of meditation. Doing something outdoors in the fresh air, away from phones, computer or television, a repetitive activity that requires little thought, I go into auto-pilot, and this is where I'm able to empty my mind. This is my personal form of meditation. So should you wish to meditate and have difficulty like myself with the traditional manner, if you have a garden, try spending some time out there. You may have another hobby that is similar to gardening, needing little thought and that is repetitive or rhythmic, allowing you to empty your mind for a while. Whether you have Parkinson's or not, we all need a little quiet time to "switch off" from this busy modern world we live in.

Good posture

I am battling constantly to stand up straight, and walk with good posture, but it's easier said than done. With all the best intentions, I start off in an upright position, but it doesn't take long before my shoulders are hunched forward and I start to take on the appearance of an old lady (according to my daughter!). Of late I have become breathless and a muscular ache stretches across my chest and terrible back ache - which is due to bad posture. By sitting or standing in a hunched position, I am literally squashing my heart and lungs. 

Working daily with Nordic Walking Poles helps tremendously with posture and gait, although I have found it not to be long lasting. When I walk without the poles, I seem to automatically revert to shuffling and poor posture. Voice therapy, having to stand up straight and empty one's lungs whilst sounding like a bad audition for a horror movie, again my posture is helped. I am finding that everything is linked, and by doing all you can to improve balance, gait, posture, voice and various other aspects, it's like a chain reaction.  If I am calm and relaxed, engrossed in something I enjoy doing, I feel generally much better. Pottering around the garden, I can completely lose track of time. I'm sure everyone has their own activity or hobby that is absorbing. It's very important to keep busy and occupied, which helps keep Parkinson's in the background. When a  patient has no interest or hobbies, and does nothing all day, the negative effects of being idle can become detrimental causing Parkinson's to rapidly advance.

I am often snowed under from my writing, and answering e-mails, and campaigning, barely having time to breathe, but were it not for all my endeavours that keep my mind active, I don't think I would be faring so well. Concerned family and friends often ask if this is all too much for me, and some days I must admit I feel as if I am drowning in e-mails, articles, writing and correspondence, but I wouldn't have it any other way. I am determined to do all I can whilst still able. The day I stop writing will be a sad day indeed, for it will not be from choice.

Eye problems related to Parkinson's

Suffering any chronic illness, especially a degenerative disease such as Parkinson's can result in feeling as if one's world is crumbling and falling apart. There are so many symptoms and facets of Parkinson's that cause strange complications, just when you think you know everything, something new crops up. I have noticed my eyesight has become extremely poor over the last few months, and after having all the tests you can possibly imagine, the optometrist could find nothing wrong. He told me to check with my neurologist, suspecting it was more than likely to do with Parkinson's. At my recent check up, I told my neurologist about the problems I was having, blurred vision, stinging eyes that barely blink, often dry and sore, making it difficult to read.

I discovered that due to Parkinson's patients blink far less than a healthy person, the protective tear film which is in fact the first layer that light hits when entering the eye, can often dry up. If this layer is defective, the light is scattered resulting in blurred vision. Knowing how expensive prescription glasses can be, I asked if it would be helpful to get new glasses, or if I would be wasting my money. It looks like I won't be getting new glasses, so this is yet one more symptom I shall have to put up with.

My home care nurse is about to arrive, to administer the enzyme replacement therapy for Gaucher disease, so I had better stop writing and get ready for her. The infusion takes about an hour and a half, and it's only once every two weeks which doesn't interfere much with one's life, especially since the introduction of "home treatment" saving many hours spent in hospital.

Take a look at this very interesting link and read for yourself about eye problems experienced by Parkinson's patients.

Narrative Medicine Article

Speaking at a Conference recently, solely for those in the medical field specialising in Gaucher disease, I could tell from the response to my talk that several points I made during my 45 minutes allotted time, had not been heard before. Patients are generally reticent about coming forth with what they consider personal information, feelings, fears or thoughts. All this very pertinent information, may seem trivial to a patient, and feel awkward, but a doctor needs to hear the entire story, which is where narrative medicine comes into play. Understanding completely the complexities of any serious illness should be part and parcel of one's health care, but both parties (doctor and patient) have to realise the importance of this extra information and put it into practice. Some piece of seemingly insignificant information that a patient has not bothered mentioning for fear of sounding silly, may in fact be the missing piece of the puzzle when a doctor is trying to make an accurate diagnosis and treatment plan. A doctor can only work with what he is given. Sometimes even an extensive gamut of medical tests wont give the entire picture without the patient's story.

My advice to doctors, is to please take the time to listen to your patients if they are trying to tell you something. And equally important - if you are a patient, put your dignity or any embarrassment aside, and tell the doctor your entire story. With both parties co-operating, you have the best scenario possible.

My story has been featured along with other interesting articles in "A Journal of Narrative Medicine. If you would like to take a look at this informative site, The Intima is an on-line Journal dedicated to Narrative Medicine.

Dopamine Shortage

I sent my daughter off to the pharmacy to collect my Parkinson's medications, and much to our surprise were told they had a shortage of Dopamine! I found this curiously ironic, as would anyone suffering Parkinson's since we all have the same problem; a shortage of Dopamine! I presume their short supply difficulty will be easily solved in a day or two, unlike my own situation.

Have you ever stood in the pharmacy, waiting in line, needing to buy something personal and  hoping you'll be served by an empathetic sales lady? Only when it's finally your time to be served, the youngest male member of staff barely showing signs of stubble on his chin, who looks young enough to be your child, makes you withdraw like a shrinking violet. This results in leaving the pharmacy with toothpaste and vitamin C tablets, neither of which I needed, and the very item I went in there for, seems unattainable without feeling humiliated. Of course not having the courage to enter the same premises in the hope of being served by someone else, I search out another pharmacy and begin the process all over again. I'm quite sure this is a common story that many of us are guilty of.

I was once in a pharmacy, standing in line behind a lady, who continually scratched her head. She made it to the front of the line and asked the pharmacist for shampoo to treat lice. You can imagine everyone's immediate reactions, and without a single word spoken, the line of people behind her backed away several meters. As she turned around having purchased the shampoo, she realised we were all standing well back and the poor lady blushed as she rushed out of the pharmacy.

There is no easy solution buying products or filling prescriptions in a pharmacy when it is of a personal nature. The only answer is to send someone else!!!

Every day tasks become a chore when you're not well. Cooking can be difficult with Parkinson's, but tackle the kitchen with a sense of humour and a little shake of this or that and hey presto you have an article for The Huffington Post.  Have a great weekend everyone! 

Intellectual Property

My writing has understandably become very important to me, a life line of sorts giving me purpose and opportunity to contribute to society. Suffering from two chronic diseases, I write from personal experience and straight from my heart; my works are original and entirely from my own thoughts. Whenever I can, I support others campaigning in promoting awareness of a worthy cause, and I oblige by giving the name and link to the relevant site. If I share a piece of information or writing that someone else has written, I always ask permission from the person, accrediting their name and link to a website. This is how it should be done, if you understand the laws appertaining to "Intellectual Property" which refers to creations of the mind for which exclusive rights are recognised such as any artistic or literary works.

I was upset to find a site has been copying some of my articles and passing them off as their own. This is plagiarism in its purist form - in other words, and to be rather blunt: you are stealing my work. I will not publicly put to shame by mentioning the site's name, but would urge you, to please have the courtesy that I afford others and write to me asking my permission. If you like so much what I have written, that it's worth copying and putting up on-line, please have the decency to accredit who originally wrote the piece. 

In today's world, with the Internet at our fingertips, easy access to copy and paste anything on-line is temptingly easy - so in future stop and think a moment, please bear in mind the person who has spent the time and effort in writing. Parkinson's has robbed me of so much, my writing is one of the few things I have left and is what keeps me going. You wouldn't steal a bar of chocolate from a sweet shop, or a pair of sandals from a shoe shop, so I appeal to your sense of decency and ask you to show me the same respect.  

Loss of Speech

Losing one's ability to speak is a frightening thought. Although my long suffering husband would probably be delighted at a little reprieve from my endless chatter, joking aside, it would be no laughing matter if I were unable to communicate verbally. Apart from losing a social skill that would leave one isolated to some degree, the most frightening scenario I can think of is being hospitalised and unable to speak to any doctor or nurse. When someone can't speak (for any number of reasons) one is unfortunately quickly categorised as being of unsound mind, and often harshly treated without dignity or empathy. It's highly insulting for people to assume one's faculties are not up to par because you cannot communicate verbally any thoughts or questions.

Despite all my troubles health wise, I have great clarity, my mind is sharp and I've maintained a sense of humour. The hellish thought of being unable to speak, as if imprisoned by Parkinson's cloak of silence, terrifies me. If this unimaginable nightmare were ever to happen, I'm not sure how I would cope, although I've coped with so much during my life, I guess I'd make it over one more hurdle. You'd probably find me going everywhere with a pen and pad of paper in my hand. This sounds like a good plan, but my writing is getting worse - smaller and smaller, making it difficult even for me to read what I've written, let alone expect someone else to have the patience to decipher my minuscule scribbles. It is with this in mind, that pushes me to do voice therapy in the hope I wont lose my voice. I am fighting each day to maintain what I have left, and doing all I can to keep Parkinson's at bay.

An amazing breakthrough was made by scientists in the U.K. whereby they have developed a system of pumping a protein into the patient's brain which could potentially stop the disease from progressing any further. This clinical trial sounds good news to me! If you'd like to read for yourself, take a look at this article reported on Sky News.

Free Book Now Available

To mark writing my daily blog for a second year, the entire entries have been collated and made into a book which you may download FREE from Smashwords  It is not meant as a fine piece of literary work, but rather an honest account in journal fashion touching on the very many aspects of living with chronic disease. It doesn't matter if you have Parkinson's or Gaucher, or suffer from an entirely different illness, for ultimately we all ride life's roller-coaster of ups and downs, of which we have little control over. I write frankly from personal experience, with a sense of humour, about the every day effects chronic disease has upon us and our families. Education and knowledge are paramount for the patient, caregiver and the medical community.

Some medical conferences are explicitly for those in the medical profession, and patients are not invited. I can whole heartedly understand the purpose of these gatherings, sharing information that triggers discussion, bringing great minds together can be enlightening, striding to make advances for the patient's well-being. However I believe it is highly beneficial for doctors and nurses alike, to invite a patient or two along, purely to give a perspective from a very different view, that may shed some light on certain areas, assisting those in the medical field to have a better understanding.

A doctor or nurse might have been working for many years and have a wealth of experience with patients suffering a certain disease, and know the symptoms, medications and treatments inside out. But do they understand and realise the ramifications chronic illness has upon the patient and their family from an emotional, and psychological point of view? Many patients are not forthcoming with personal information, which leaves the doctor in the dark. It is therefore my aim that this journal "I'm Still Blogging" be of help to patients, caregivers and those working in the medical field.   

Entertaining Parkie style

As hard as it is entertaining, making a meal for family or friends, is very important to keep up one's social life, both for myself and my husband. If I stopped inviting people over, we would soon find ourselves isolated, living like a recluse castaway on a desert island, an unhealthy scenario for anyone. I still love to cook and try to plan meals ahead of time when I know we're having company, making meals that can be prepared in advance with as little fuss as possible. I hate preservatives, food colourings or additives, and try to use pure healthy fresh ingredients wherever possible.

We had friends over the other night, and a little before they arrived, I realised I had made the exact same meal for them on their previous visit, so felt a little embarrassed. They must think I only know how to make quiches, salads and chocolate cake, or that my memory is failing! Let me assure you that it is neither. My repertoire in the kitchen extends much further than this simple meal, and my mind thankfully is as sharp as a tack, so all I can do is blame it on Parkinson's. After all, what's the point in having Parkinson's if you can't pass the blame on? It's like having one's own private scapegoat in the house!

Despite the repeated menu, we had a delightful evening and thoroughly enjoyed our guests company and the chance to entertain them in our home. Finding I get very tired in the late afternoon and early evening, mornings or lunch times are normally when I'm at  my best. So breakfast, brunch or afternoon tea is usually the best time to entertain. However, when people are working, this isn't always possible, so one has to remain flexible. 

Too Heavy

I would like to say how heart-warming it has been receiving e-mails from so many Gaucher and Parkinson's patients around the world. Having contact with someone who intimately understands what life is like living with either of these diseases, sharing one's story, gives support and a feeling of not being alone. Thank you for writing, your messages are much appreciated. I apologise if I have not replied to everyone yet, who took the time to send me e-mails, but I'm rather snowed under, so please be patient, and I will get around to answering you all personally.

I was at a hospital recently and had to visit the ladies room, or as a dear aunt would say "to powder my nose". I never did quite understand what "powdering one's nose" had to do with a normal bodily function. Any way, I digress; I found much to my amazement, the door to the ladies toilet (I presume the men's toilet door was the same, but I confess I did not try it) was so heavy, I could not push it open. I had to stand and wait for someone to come along and open the door for me. Once inside, the doors to each cubicle were light in weight and easy to open with large locks perfect for Parkinson's fingers with little dexterity. However, once I had washed my hands and wanted to exit, I again couldn't open the heavy door and was trapped there till a lady came along and opened it for me. Of all places to find a toilet door that is too heavy for someone disabled, feeling unwell or weak, a hospital is the last place I thought I would discover this problem.

I have been in many restaurants and shopping malls where I have come across doors too heavy for me to open, but to have this difficulty in a hospital is incomprehensible. I'd love to know who was responsible for ordering the doors. Did anyone think or check before ordering such unsuitable doors? Has anyone complained? Maybe its not occurred to any of the staff, but next time I attend this hospital, I shall bring this to their attention, and hope something can be done about it. Maybe it's simply a question of changing hinges that will allow the door to open easily.  

It's small things such as this that can make life difficult for people like myself. Planning any public building, doors that are wide enough to take wheelchairs and don't require Herculean strength to open, should surely be a basic requirement. If the person in charge of designing and ordering items for a public building, such as doors, door handles, and chairs in waiting rooms, to mention just a few items, has no experience with disability, then they should call upon the expertise of someone who knows what is required.

Voice Therapy

A common problem with Parkinson's patients is the loss of control over one's voice. The Lee Silverman Voice Treatment (also known as LSVT - LOUD) focuses on loudness (volume) which has been found to help many problems related to speech. If you have Parkinson's, you may have experienced loss of volume, hoarseness, monotone pitch or slurred speech. To increase one's communication skills which automatically improves self confidence, repetition of voice therapy exercises really does work.

To stick at something, making it part of one's daily routine is hard work, but nothing comes easy when you suffer from Parkinson's, so you have to be resolute in making the effort. You may not see results immediately, but it's worth while, so be patient and persevere, for after about three or four months, you really should hear a difference. Your family and friends will notice the change too, and be able to hear you properly. Husbands who have the uncanny ability of selective hearing, wont be able to use this excuse any more. I come from a long line of "chatter boxes" so talking is very important to me, particularly when having public speaking engagements, I want to be head loud and clear to get my message across. If you are having problems with speech, see if there are any speech therapy courses near where you live. 

As you're already here on-line, take a moment to look at my article "Stepping Out" on The Huffington Post. Wishing you all good health and a very good weekend.

And Parkinson's taketh away

Parkinson's, is debilitating and progressive. I notice the small changes as they silently creep up on me, making it painfully clear how this disease is unstable, unpredictable, and on occasion I'm knocked for six as yet another part of my life is taken away.

I have been sewing since I was five years old, and for many years made my own clothes, various things for the home and gifts for family and friends. Slowly, since being diagnosed with Parkinson's, sewing has become increasingly difficult. At one stage I realised the fine silk embroidery I used to do, was definitely a lost cause, and then quilting was added to the list. Using a sewing machine requires little dexterity for all I had to do was feed the material through under the metal foot of my trusty machine which does the work for me. But even this proved too much recently, unable to cut fabric or machine in a straight line.

I was with my husband and we were near a material shop, that beckoned me in. For someone who has always had a passion for sewing, the sight was almost like eye candy; shelves lined with beautiful brightly coloured cotton fabrics almost mesmerised me. Before I knew it, denial took over, as one particular pretty fabric caught my eye. Within a minute I had bought 2 meters of this gorgeous cotton material with the intent of making a simple garment for myself. Caught  up in my enthusiasm, it wasn't till I began my sewing project the following day, that I quickly realised I can no longer even use the sewing machine, and that my abilities of sewing have now been completely stripped from me. I fought and struggled all day, refusing to give in to what was inevitable. I was so frustrated at being unable to complete, what for me should have been a simple project, that the more I fought it, the worse things became. By evening I was in such a state, I had literally made myself ill.

Accepting one more thing I cannot do, is a hard pill to swallow, and it saddens me to have lost a hobby that gave me such enjoyment for so many years. It was with a heavy heart that I gave a dear friend who quilts the very last of my fabric and quilt batting. So the scores on the doors for today are Parkinson's = 1, Elaine = 0. But this wont keep me down for long. This ravenous disease might have stolen yet another piece of my life, but I won't let it break my spirit.

Due to October being Gaucher Awareness Month, my childhood story of growing up with a rare disease has been posted on a site "Stories from kids with rare conditions". 

Talk at the hospital

You may not realise this, but it takes some preparation on my part when I have a public speaking engagement. I need to rest and take things easy for a day or two prior to the event. Due to Parkinson's my speech is sometimes soft, as if the volume has been turned down and it can sound kind of hoarse. There are special speech therapy exercises for Parkinson's patients, and a week ago I began to practice at home, to improve my voice. We have a high cathedral ceiling in the lounge, so you can imagine the acoustics, and how loud my voice echoed. Although I was alone in the house, (not counting the dog) I suddenly wondered if my next door neighbour could hear my speech therapy, which probably sounded like a screeching cat being strangled to death. Feeling embarrassed I asked my neighbour if she had heard anything strange that morning, but thankfully I found she had been out.

Showering, getting dressed, doing my hair and makeup all takes time and precious energy, however I think public speaking is extremely important. Talking as a patient from personal experience to an audience of either fellow sufferers offering support; educating and creating awareness to people who know nothing about Gaucher or Parkinson's, or addressing doctors giving a perspective they may have not heard before - to my mind makes this huge effort worthwhile.

I was asked to give a talk at a Gaucher Conference for a group of charming doctors who had come from around the world, so yesterday I travelled to the hospital, with my husband accompanying me, not only as my private chauffeur, but as always, he is by my side giving me endless support. Where I'd be without him - I do not know.

In an intimate conference room, I talked for 45 minutes and told my story of growing up with Gaucher disease and being diagnosed at age 44 with Parkinson's. Thankfully I had been asked to talk early in the day, at 09:30, which is when I am at my best. As the day progresses, by late afternoon and early evening, my condition starts to deteriorate. My voice was not at its best, despite having done some voice physiotherapy sessions to improve it, but I got my message across. I finished my talk by reading a portion of the poem that appears at the very end of my book which I think encapsulates my positive outlook and attitude in dealing with two chronic diseases.

From the feedback I believe the talk was a success and hope the doctors present heard something new, seeing things from a patient's viewpoint for there are not many people in the world with Gaucher who also suffer from Parkinson's.

Who's rocking the boat?

In answer to someone's comment the other day about wearing green shoe laces in support of Gaucher Awareness Month, you can wear them any way you wish; just because laces were meant for shoes doesn't mean you can't get inventive. Here is the Steps Ahead of Gaucher link again, if you'd like to take a look at the photo gallery to see what original ideas others have come up with.

Do you know someone, who when you ask "How are you?" they reply "Oh I can't complain…" and then promptly go on to list a long assortment of woes and troubles including intimate medical issues which is way more information than you want to hear, making you wish you'd never asked in the first place. But we all do it, for it's polite to ask "How are you?" and a sentence that rolls off the tongue before you can stop it.

I wondered the other day, if I was guilty of the same offence. When someone asks me "How are you?", I usually say "Not too bad", but then go on to tell them about my latest project which probably bores the pants off my relatives and friends who have heard pretty much everything there is to hear about Gaucher and Parkinson's. No disrespect meant, but I think they would be quite relieved if a cure were found and they didn't have to hear about my campaign any more. Believe me, I could think of nothing better than being cured and never to mention Parkinson's or Gaucher again.

I have a stubborn trait in my character, and absolutely refuse to sit quietly and surrender to chronic illness, that given half the chance would take over and engulf me like a tidal wave of ill health. Instead, I am resolute in my campaign to reach fellow sufferers and make the general public aware. Today I'm off to talk to some doctors that have travelled from abroad to attend a conference, so yet another chance to spread the word. Although I may be one small voice, my determination wont waver. I won't sit still, nor will I be quiet, I will rock this boat for as long as I am able.

Support

We all need support in one form or another, particularly when faced with on-going difficult issues. I posted on 1st October about this month being "Gaucher Awareness Month, and was amazed and warmed by the response. One friend, who fortunately does not suffer from Parkinson's or Gaucher, but has had some harrowing involvement with ill health in her family and life experiences one wouldn’t wish upon one's worst enemy, she fully understands the importance of empathy and support. Upon reading my blog, she immediately set forth on a mission to find a pair of bright green shoe laces (if you didn't read my blog on 1st October, maybe look back and read, for understandably you may be a little confused at this point about the significance of green shoe laces). I was so touched and impressed by her enthusiasm and response and wanted to say thank you for the effort and support, and thank you also to everyone who is wearing green shoe laces and participating in this awareness campaign. What started as an awareness promotion, might very well become the latest fashion statement!

I am just one person, and sometimes wonder if the hours I spend writing and campaigning bear any fruit. Then out of the blue, I receive e-mails from complete strangers who identify with what I am writing about, which confirms I am reaching people and gives me the strength and incentive to continue. You may not be able to change the world, but you'd be surprised at what one person can achieve when great determination drives you ever forward. Pulling resources together, in unity with one loud resonating strong voice - getting a message out to the general public, no matter what the cause, is made that much easier if we all join forces.

So let's shake things up - make a stand, voice your opinions, do something of significance and worth. Like a chain reaction, you have the power within you to inspire and really make a difference. 

Changes in appearance

They say being on camera makes one look 10 pounds heavier, but no one ever mentioned that it also has the uncanny ability of capturing every wrinkle and crease ageing one instantly. I was horrified when I looked at some pictures that had been taken of me recently, and asked my family "Is this what I really look like?" Receiving a painfully honest answer, there was a resounding "Yes".  It's curious how we see ourselves, even looking in the mirror I don’t see the same woman who stares with that unmistakable Parkinson glazed expression that is so apparent in photographs. We are probably all alike in this respect, and don't see what others do. Although I certainly don't feel like I'm 21 any more, I had no idea my appearance has changed so much. Maybe this explains why sometimes I am offered assistance when out. I always thank people, thinking how thoughtful and sensitive complete strangers can be. But now I'm starting to realise, they offer help because clearly I look like I need it!  

I don't mind getting older, and am strangely quite proud of my few unruly grey hairs that announce I've "lived" and have a story to tell. The crows feet around my eyes are reminders of all the laughter, smiles and good times I have enjoyed over the years. However, I do mind the change in my appearance which has nothing to do with age, but rather from the effects of Parkinson's itself. I often have the most unattractive gormless expression on my face, known as "masking", which would be great if I played poker, for no one would be able to guess whether I'm bluffing or not. I find this unblinking, staring, rigid face unnerves people who don't know I have Parkinson's, and leaves them wondering what on earth is wrong with me. I sometimes stare without realising, which probably appears rude to those who are unaware of this very visual and upsetting symptom.

I am still able to smile and laugh if it's spontaneous, but when I'm just listening to someone talk, I can feel my face literally freeze up, usually curiously with one eyebrow raised as if I am about to pose a question. Even worse, put me in front of a camera, and asked to say "cheese", the most terrible false smile which looks painfully stretched across my face appears, so taking photos for media purposes has become extremely difficult. To get a good picture, I have to be taken off-guard where my smile is genuine and natural, so I guess it's fortunate that despite my situation I can still find things to laugh about. We all need to laugh, it's by far the best medicine!

Mammogram

Having reached the grand age of 50, it is standard procedure for my health fund to send women for a mammogram if they have not had one before. Fortunately we don't have any cases of breast cancer in our family (we've enough of everything else thank you very much!) so the other day was my first experience, at what many women have told me is a horrendous barbaric test. After hearing some ghastly stories I warily entered the Mammography department and waited for my name to be called. It's amazing what one's imagination can conjure up with a little imagery from some well meaning ladies, and I began to wonder who had invented this torturous contraption that sounded like it should belong in the "Chamber of Horrors" at Madame Tussauds in London.

The technician opened the door and called my name, I hesitantly stood acknowledging her but was quickly swept away from my husbands safe arms into the imaging room. I was asking myself, what went through someone's mind to invent this piece of brutal equipment, compressing one's breasts in-between two plates? The technician gently helped me undress, and positioned me, telling me "this may hurt a little". I stood there, my flesh helplessly trapped in the machine. I was waiting for the excruciating pain everyone had told me about, but it didn't happen. The technician took four pictures changing my position for each one, and then told me the mammogram was over. Where was the pain I had been told about? I was expecting something terrible, but it wasn't so bad and quite tolerable.

Did I happen to have a particularly good technician? Was it a new type of mammogram machine? Is my pain threshold so high that this test registered low on my senses? I don't know the answer, but was very glad it was not the terrible ordeal I had expected, and hopefully the results will come back clear.

As October is "Gaucher Awareness Month", I have written about the novel campaign of green shoe laces to bring greater awareness of this rare disease in The Huffington Post. Please show your support by taking a moment to read my article.

Is DBS an option?

I have come across a number of patients who have had DBS (deep brain stimulation) and the procedure has been a success. Unfortunately there are some cases which generally one does not hear about, that are not completely effective. Speaking recently with two ladies, both of whom have undergone DBS, experience great difficulty in walking and speaking, despite going through this very invasive procedure. I found it curious that no official body or doctor knew or would talk about the cases deemed unsuccessful. Is it a matter of not every Parkinson's patient being a good candidate for DBS? Is it down to diverse techniques in different countries? Or is it just statistics, like with any operation, there are a number of unexplained cases that for some reason end unsuccessfully?

It was brought to my attention that The National Parkinson Foundation has produced a comprehensive publication, and whilst reading through it, I found for the first time, the issue revealing that DBS is not for every patient and I quote:

"Unfortunately, most people with PD are not good candidates for DBS because many of the symptoms of advanced PD do not respond to this treatment."

Take a look at page 3 entitled "Treatment" and read for yourself. I would like to thank the doctors who wrote this paper, for their honest professional opinions. I think I can probably speak for most in saying as a patient, one would rather know the truth, even if the prognosis is not so good. At least you know where you stand and can then take appropriate action and make a "game plan". Information and knowledge are paramount to coping with any serious illness. Knowing all your options and consequences are important facts that we need to be armed with before making any major decisions.

Three's a crowd

My husband and I were quite content until Parkinson's decided to join us. Two's company, but three's a crowd, and Parkinson's, like a third wheel, just doesn't get the hint and move on. Once I was as fast as grease lightning and a master of multi tasking, capably handling the role of wife and mother also working a full time job 9-5. How times have changed from once stepping through each day at a fast pace of a fox trot or rumba, now days it's more of a slow dance, as I cling to my husband, in an embrace, hoping not to stumble and fall.

I was preparing dinner, which once I would have done as quick as a flash, but now this mundane chore entails much time and energy. I had put onions on the stove to sauté and suddenly thinking of something to write I went to my laptop. After a minute or two, I became engrossed in writing, and a while later returning to the stove I found I had burnt the onions! I was so annoyed at myself I thought I would take a break and called a girlfriend, who after telling me of the various things she had burnt in the past, made me feel better, and she gave me strict instructions to take a break, go make myself a cup of coffee and put my feet up.

After taking her sound advice, I sat admiring the garden whilst finishing my coffee and wondering how many inches a day the tiny but very healthy and determined wisteria plant could grow. Refreshed, I started over preparing dinner, and believe it or not, I was distracted yet again and ended up burning the onions a second time! By now, highly irritated by my lack of concentration I was beginning to see the virtues of "take-away" food, but determined to serve my family a home cooked meal, I threw away the second lot of burnt offerings, and started from fresh once more. Well third time lucky they say, and fortunately I managed to stay put next to the stove, and watch carefully as the crisp white onions turned to a perfect golden colour. Parkinson's doesn't allow me to multi task any-more, and with no sense of smell I have no hint that something is burning. In future I will endeavour  to concentrate on doing one job at a time, and not to leave anything cooking on the stove unattended.

Lace up your shoes

If you've been following my blog, you'll know that I was born with Gaucher disease, a genetic disorder unknowingly passed on from my parents; a birthright  I could have well done without. I was further diagnosed with Parkinson's at age 44, so I wear two hats as it were, advocating both diseases.

October is Gaucher Awareness Month so step ahead of Gaucher disease during this month, show your support for the Gaucher community and join by wearing green shoelaces as a symbolic gesture. In America, Genzyme Corp. have come up with this original campaign, and throughout the month of October, anyone wearing green shoe laces (or as a bracelet if preferred) may submit a photograph and upload it to www.stepsaheadof gaucher.com. In turn, Genzyme Corp. will make a donation on your behalf to the National Gaucher Foundation.

 As an overlooked rare disorder, help promote awareness and unity in the fight against Gaucher, most importantly, get people to notice and become educated about this rare disease! Please help me and the 10,000 known Gaucher patients throughout the world, spread the word by sharing this message and passing my website on to your family and friends.

Gaucher disease is caused by a deficiency in a particular enzyme (glucocerebrosidase). The body is more fragile than we imagine and when one small thing is thrown out of whack or is amiss, like a domino effect, the outcome can be highly damaging. Genetics a complicated subject, was once explained to me, as if a recipe for a cake had a error in the list of ingredients. Imagine a recipe with a mistake calling for a cup of salt instead of a cup of sugar! The cake would probably bake equally well, and served on a plate it might even look like any ordinary cake, but take one bite and you would immediately know from the unpalatable taste that something was definitely amiss. One simple wrong ingredient, too much or too little of something, can make a world of difference. From bone pain and severe fatigue to life-threatening complications, it is challenging for patients and caregivers to cope with Gaucher.

Learn more about Gaucher disease disease from Gaucher Care.