Farewell 2013

I was born with Gaucher disease, battling ill health from a young child, and for the last eight years I have been living with Parkinson's. Becoming an advocate for both diseases, has taken me on a tremendous journey, one which I would never have dreamt of. I have shared with you all my thoughts in an honest candid fashion, the ups and downs of living with chronic disease, along with imparting helpful information I've learnt along the way. There have been difficulties and bad days tempered with funny stories to relate, and I hope my sense of humour and positive attitude in the face of adversity have spoken to you, reached out as if we were sitting opposite one another having a companionable chat albeit via the Internet. I have had the great privilege of speaking on behalf of the Parkinson's and Gaucher community through my articles in The Huffington Post and at various public speaking engagements. A gift you have all given me is the pleasure of meeting many wonderful good people, fellow sufferers and caregivers, hearing inspiring stories that touch the heart and uplift one's spirit.

I would like to thank you, my readers, for all the support, comments, e-mails and messages you've sent me and I wish you all the very best. May you experience more good days than bad, enjoy happy moments with your loved ones, make special memories that you'll look back on fondly, and grab life with both hands. Don't waste time and energy on the small stuff. Realise what is important to you for life is precious and goes by in a flash.  

I believe Mark Twain had the right idea when he said: "Twenty years from now you'll be more disappointed by the things you didn't do, than by the ones you did do. So throw off the bowlines. Sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover."

I hope you'll continue to stay with me as I blog on Fridays, sharing my journey and experiences with you along the way. Until then I bid you adieu, and wish you a happy and healthy new year. May 2014 be everything you wished for.

Resolutions

I arose early and there was a definite chill in the air. Standing in the garden before it was barely light outside, as I breathed out, I could see my hot breath before me, hanging in mid air like a mist. Glancing around the garden, it had clearly rained during the night, and the plants looked fresh, all signs of dust had been washed away.

I feel at peace with my decision to cut back on some of my activities, in particular writing a blog daily. I love to write and therefore didn't realise the strain it had become as my health has deteriorated. I have received many messages from various people who understand only too well that writing daily has become a burden in my present state. As the author J.Conrad Guest pointed out, "There is often a fine line between therapy, writing as exercise to keep at bay some of your symptoms and knowing your limitations, and giving as a gift to your family your best days." 

Here is one of the many touching messages I have received, I would like to share with you:

"Life will not be the same for me when I will no longer be able to wait for your blog to appear at 7 a.m. before getting out of bed. You have inspired so many people out there and given all your fellow sufferers hope and the determination to cope. You always look on the bright side of life and I have the greatest respect for your attitude. I don't know many people who have been invited to blog for the Huffington Post and am so pleased that you will be continuing to do so.
This is the time to wish you a Happy and a Healthier New Year and I want you to know how much your friendship and continued support for my volunteering efforts help me. Jill Sadowsky"

Thank you everyone for your support and understanding in what has been a difficult decision to make.

Coming to the end of another year, always makes one look back on events and achievements. It has certainly been an interesting and eventful year. I'm not one for making new year's resolutions, but I do hope that 2014 brings a cure, or treatment to stop Parkinson's in its tracks. If I had Aladdin's lamp, I'd give that old mythological object a good rub and summon up a genie. I wouldn't need three wishes, just one would do! However, it would be a shame to waste two wishes, so I'm sure I'd come up with something!

A new year inspires hope and a fresh beginning, to start as one plans to go on. I will endeavour to do all I can to keep Parkinson's at bay. Exercising as much as I can without doing harm, voice therapy, eating a healthy sensible diet (and staying away from the ice cream that tempts me from the furthest recess of the freezer, and spending as much time as possible surrounded by those I love. I will continue to embrace each day and enjoy my life, making the most out of each moment.

Making The Right Decision

Deciding what is best for you, in your particular situation is a personal choice, and can only be made by you. Relatives and friends with your best intentions at heart and a desire to help, may not fully realise the circumstances and what is right for you. I have spent two and a half years writing a daily blog from personal experience (much like a journal) with the intention of letting others in similar situations feel they are not alone, and writing for the Huffington Post once a week for over a year. I am participating for the third year in a university programme for student doctors in their first year of medical school, the aim for them to meet and interact with chronic patients. I have had a number of public speaking engagements here and abroad, some of which were to audiences purely of doctors and those in the medical field. What started off as writing a few poems about living with Parkinson's and Gaucher, without realising has over time snowballed into a full time campaign.

Although I am still in good spirits, remain positive, and my mind is as sharp as a pin, my physical health has deteriorated to some degree. I therefore had to re-assess my situation and my daily activities which brought me to a difficult decision. From the beginning of 2014, instead of writing each day, I will write on my personal blog just once a week (on a Friday) and continue writing my weekly articles for The Huffington Post. I hope this will alleviate some of the pressure and precious time that I spend each day sitting at the computer. I need to spend my energies on my husband and daughter. I type very slowly now, and it takes me far too long to write all that I want to, and this is preventing me from doing other things. I can no longer run at the pace I have been and find I can't keep up with everything I need to do each day.

I am very fortunate that my dear sister-in-law is a qualified Yoga teacher and she has been helping me with breathing exercises, and slowly will introduce me to some simple and gentle exercises that should be beneficial and improve my mobility. I can already see a slight improvement just from the breathing technique she showed me, so I have great hopes. I endeavour to do voice therapy exercises every day, and walk with the Nordic Poles (although I can barely manage ten minutes) plus physiotherapy exercises that I do laying on the bed (not to put weight on my hips due to the Gaucher). All these things take a surprising amount of time each day and are important to do on a regular basis for my physical well-being.

I'm not going anywhere, I'll still be here, but just writing once a week, so please do stay with me as I continue my journey, sharing experiences with you along the way. If you have not read my article this week on The Huffington Post, take a moment to read "The Sound of Music"! I can assure you, it has nothing to do with the classic film starring the lovely Julie Andrews.

Gaucher Conference 2013

Last night, my husband and I attended the yearly Gaucher Conference which was organised by The Gaucher Association. I would like to thank the dedicated members of the Committee who volunteer their time making these events a success, and the participation of the various pharmaceutical companies who produce the enzyme replacement therapy.

The evening began with some light refreshments and the opportunity of speaking to representatives from the different companies, and the much respected doctors and medical staff who work in this field and whom we've come to know well over the years. It was nice to see them all out of their white coats and usual hospital setting. Apart from it being an enjoyable evening, I find attending these conferences, meeting fellow patients, some of whom I've known for over 20 years, since the inception of The Gaucher Association, along with new patients I have not met before, highly beneficial, as if belonging to an extended family of sorts.

There were several speakers, including Doctor Rosenbaum and  Professor Zimran, who is regarded as the leading specialist in Gaucher. For the first time, a medical psychologist was invited, and gave a very interesting talk addressing issues that many patients would rather not talk about, such as denial or depression when diagnosed with a chronic disease that one is going to suffer for the rest of one's life. There is no cure for Gaucher, but there is treatment available today, and most definitely professional psychological help in accepting diagnosis and coping with the daily demands of an ongoing disease. Coming to terms with the reality of living with a chronic disease and realising one's limitations and acknowledging loss is an important part of living the best life possible with a healthy mental attitude. Initial denial is perfectly acceptable, but one needs to move on and work through the various feelings and emotions that are bound to affect anyone in such a situation. Due to time restraints, this particular lecture only scratched the surface of a topic that needs further discussion. I hope very much that the organisers of the Conference realise the importance of this subject and invite the charming medical psychologist again, who I'm sure has a lot to contribute, and I thank her for taking time out of her busy schedule to attend last night.

Being in a room full of Gaucher patients and their families, together with doctors and those in this specific field, all specialising in a rare disease is quite phenomenal. If you had explained this scenario to me when I was a youngster, I would never have dreamt it would one day be possible. Growing up with a rare disease, the doctors in England at that time knew very little, there was no information or support group, and I most certainly had never met another person with Gaucher apart from my brothers. Whatever disease you suffer from, having a comfortable forum or support group is so important to one's well-being, and knowing you are not alone.

I apologise if I didn't manage to say goodbye to everyone, but we left before the dinner was served as it was late by then, and not feeling so good, we felt it best to leave.

My latest article for The Huffington Post is now up on-line if you'd like to take a look. 

Too Young

A new pharmacy opened in our area, and being so conveniently nearby, I decided to try getting my prescriptions filled there. I handed a wad of monthly prescriptions over to the cheerful pharmacist, and after studying each paper, she  looked at me and said "I'm sorry, but we don't have any Parkinson's medications in stock yet." I was a little surprised, but before I had a chance to open my mouth, still smiling at me, she asked if I intended to get future prescriptions filled there, they could order the necessary medications in especially for my mother. "For my mother?" I asked, almost choking on the words, since my mother passed away almost three years ago. "The prescriptions are for me - I have Parkinson's" I stammered. We both stood staring at each other; it was one of those moments that seemed to last forever, and an awkward silence fell over us. I'm usually not short of things to say, but this had thrown me for a loop. The pharmacist flushed and clearly young and inexperienced finally said, "I'm sorry, but you look too young to have Parkinson's, so I assumed the prescriptions were for your mother." I was too tired to explain my mother is no longer with us, nor did I have the energy to grab this opportunity in educating someone by giving one of my mini lectures about Young-on-set Parkinson's, that I've now got down to a fine art. So instead I wearily just nodded my head as she took down my details and in future, I'll be able to get my medications from there.

It's odd how people make assumptions. Maybe I was looking good for a change - who knows? Perhaps the young woman doesn't know anything about Parkinson's and thinks it's a disease that affects only the elderly. On my next visit to the pharmacy, I might have a little more energy and enough to leave her well informed about their new customer with Parkinson's.

Quality time

With the holiday season upon us, it is a time when businesses and government offices close down, and it appears Britain, like other countries comes to an entire stand still. It is the perfect opportunity for families to get together and spend quality time in each other's company.

Apart from dear family, I am lucky to have good friends in my life, some of whom are most unexpected, but with open arms have been embraced and welcomed. Sometimes the best presents in life don’t come in boxes wrapped up in pretty paper and ribbons, but in the form of great friendship. These precious gifts are to be cherished and looked after at all costs for they are often irreplaceable. I would like to take this opportunity of thanking the women in my life; for reasons of privacy I will not print your names, but you know who you are; a handful of intelligent, caring, fun, warm, strong empowered ladies who inspire and lift me when my spirits are low, and share good news and happy times together. Good relationships, whether they be with family or friends is what it's all about and are the essence of life.

If a relationship can withstand the test of time, and together you can grow older, wiser and hopefully learn the lessons that life throws our way, then you are indeed lucky. As I wrote in friend's birthday card recently; "Being in your company, it matters not what we do, just spending time together me and you". So wherever you are today, and whatever you are doing, I hope you are surrounded by those who you care about most , and simply enjoy being together.

Twas The Night Before Diagnosis

Twas the night before diagnosis, when all through the house,

No one was stirring, not even a mouse.
The doctor examined me with the greatest of care,
Support from my husband who always is there.

The family were nestled all asleep in their beds,
While visions of Parkinson's danced in my head.
Retiring to bed I had a night cap,
To settle my nerves for a long night's nap.

Many thoughts in mind arose such a clatter,
I could not sleep, what was the matter?
Away to my laptop I flew like a flash,
Tore open the cover and threw up the sash.

I had insomnia, but how could I know?
One of the symptoms would arise and show.

Then out of the blue, what should appear,
But poems like dictation came fast and clear.

I wrote my thoughts down, so lively and quick,
I knew others with Parkinson's, like me were sick.
Would relate to my words, and for sure they came,
Followed my blog and came to know my name!

As I started to walk, and was turning around,
I lost my balance and fell down on the ground.
And then, in a twinkling, my dog came to me,
I needed her help as she plainly could see.

I grabbed her fur, on her shoulders put my weight,
And she stood quite still till I was standing straight.
She became my assistance dog from that day,

And is by my side, come what may.

The doctor spoke gently, went straight to his work,
Explained my symptoms, then turned with a jerk.
And laying his finger aside of his nose,
And giving a nod, from his chair he rose!

He sprang to his feet, to his nurse gave a whistle,
And home we flew like the down of a thistle.
But I heard him exclaim, you've got plenty of fight,
"See you next month, until then a good-night!"

Anything's possible!

They say that one often chooses a dog that resembles oneself, and of late, my dog and I are looking more like each other than ever. She is no youngster, and walks like an old lady, no longer with a spring in her step, but is playful and young at heart which we get a glimpse of now and then. Much like myself, she has difficulty in getting up and sitting back down. We are both on pain killers for bone pain, and tire easily, often taking afternoon naps together. As soon as she sees me go into the bedroom and get ready for a nap, she gets into her bed and snuggles down to sleep.

Having a dog has been a great comfort to me, and especially when I am alone in the house, she sticks faithfully by my side and watches over me. If anyone should come to the door who is not family or a friend, she goes into "protect mode" and woe betide the uninvited visitor who dares to step over the threshold. I would fancy being in their shoes!

I love chestnut stuffing and bought some chestnuts with the ridiculous notion that after boiling them I could actually remove their shells. As I struggled with a small knife, my fingers unable to do what they once could, I actually succeed in breaking the small bladed knife - the blade sheared clean off from the handle, fortunately I didn't cut myself. Chestnuts are slippery little suckers and extremely difficult to hold and even more difficult to cut open and remove the flesh from within. As you can imagine, after many choice words, which I shall refrain from repeating, and a lot of frustration, many of the chestnuts flew right out of my grasp and landed on the floor, much to the delight of our dog, who I have now discovered has a penchant for chestnuts. More alike we could not become, I just hope I don’t begin to drool as she does. A Dogue de Bordeaux is renowned for their endless strings of unappealing drool that often hang down from the loose folds of skin around their muzzle. But we love her, drool and all!

If you want a good laugh, and you're a dog lover, as I am, then take a look at this humorous clip of a dog driving acar.

Parkinson - Gaucher Connection

I would like to thank someone who reads my blog and left a comment the other day regarding the connection between Gaucher disease and Parkinson's. It was extremely thoughtful of you to think of me, and I very much appreciate you sending the link to this  very interesting article. Here is the link should anyone else be interested in reading about the Gaucher - Parkinson connection.

Sharing information, good useful tips and a general sense of community support through the internet has been extremely helpful to those who live in isolated areas, unable to attend support groups. Unfortunately I fall into this category, which is what prompted me in the beginning to write a daily blog, realising I couldn't possibly be alone in this position, and that there must be others in similar circumstances, unable to meet face to face with fellow sufferers.

What ever disease a person is suffering from, along with their caregivers, family and friends, support is of great importance. We all need a little help now and then. The comforting feeling of knowing we are not alone is crucial, and it is a boost to one's morale to be in touch with those who truly understand what you are going through. 

Difficulty in Typing

I was once a very fast typist, learning to 'touch type' at school, on an old fashioned manual typewriter, my speed was close to 100 words a minute. Today is quite another matter, as the dexterity of my fingers has been affected by Parkinson's and it's getting harder and more difficult to type. I have been writing this blog on a daily basis for over two years, but due to my health deteriorating, I may very well have to write less frequently. I knew this day would eventually come, and now that it's arrived, it's a hard pill to swallow.

Making this decision was not easy, but I can no longer keep up the pace I've been running at. Campaigning and being an advocate for two diseases takes most of my time and precious energy. Although undoubtedly it has kept me very busy with a project I am passionate about, giving my life purpose, I cannot ignore my changing circumstances. I need to conserve my energy, prioritise and concentrate on my family. I hope you understand, but this is a natural progression of the disease, as it is slowly removing my abilities, I have to be flexible and make adjustments in my life where necessary.

I will continue to write daily until the end of this year, but I need to make some alterations due to my changing medical circumstances. From the 1st January 2014 I will slow things down by posting on my personal blog just once a week, every Friday morning, and continue to write once a week as normal for The Huffington Post, in the hope this relieves some of the pressure I have been under and reduce the immense amount of time I spend at the computer.

Here is the link to my latest article on The Huffington Post: "Falling on Deaf Ears".

Slowing Down

Living with Parkinson's for some years, I have noticeably slowed down in many areas of my life. I walk painfully slowly, move slower, eat slower, talk slower and do just about everything at a slower pace. My speedometer appears to be stuck on "slow" and no amount of changing gears will make me faster.

As a friend of mine said "Having Parkinson's, is like living in the slow lane". I find it frustrating not being able to achieve or accomplish all that I wish to in a day, but I have to adjust accordingly to my capabilities and accept that this is where I'm at.

I constantly try and focus on the things I can still do and enjoy, and concentrate my energies on the things that matter most. I apologise for being brief this morning, but even my typing now is slower and it takes me considerable time writing my blog each day. 

It is still dark outside as I sit writing this morning, and there is a chill in the air, so I think a nice cup of tea is in order. Have a good day wherever you may be, and stay warm.

Staying in Touch

Thanks to the fast pace of life today and the ever changing latest technology, the division between work and home are often blurred. Although it can be a great asset to have the ability to work from home, especially if disabled, and stay in touch with others through the Internet, the disadvantage is that you are never off-duty. How many times have you been with family or friends, and suddenly someone's phone beeps and the conversation, however important or amusing, comes to a grinding halt, as the person is compelled by some unseen force to answer the phone, or look at the message or e-mail that's just arrived. I find this extremely rude, and yet so many don't think twice and instead of giving their undivided attention to those sitting around, their mobile phone (which should stay in one's handbag) is placed on the table in full sight as if holding court over its loyal subjects.

Admittedly when hospitalised, having a mobile phone with you is a huge plus, enabling one to stay in touch with family and friends. If I need something brought from home, I am able to simply call my husband. After surgery, concerned family and friends are  able to be in touch. There are indeed many more pros than cons having a mobile phone, but knowing when to turn it off and put it out of sight, perhaps needs a little more thought. Technology is supposed to improve our lives, not govern them. Making boundaries, turning off your mobile phone when it's not necessary to be contactable 24/7 leads to better quality time spent with your family and less stressful.

Years ago I would get a phone call to remind me the day before my doctor's appointment. Now, I get a text message the day before. Most medical records are now kept on computers and gone are the days of receiving huge envelopes with X-rays inside. Today a computer disk holds all the information. We've come an awful long way, and I suspect we've still got far to go. 

Early to bed - early to rise

It is 05:00 and having woken at 04:15 I couldn't lay there in bed any longer staring into the darkness. Trying not to disturb my husband as he soundly sleeps is foremost on my mind as I maneuver myself out of bed, like some kind of stiff zombie awakening from the dead. My body rigid, every movement difficult and painful. As I slip out of the darkened bedroom, I am greeted by our dog's snoring in a loud monotonous tone, no doubt dreaming of finding the world's largest bone, or finally catching the cat who is a constant torment, teasingly sitting just out of reach on our garden wall.

It is pouring with rain outside, accompanied by the occasional clap of thunder and lightening. This is when its best to stay snuggled in bed under the thick quilt in the arms of the man I love. What is it that's so comforting and almost soothing about being nestled in bed where it's warm and dry during a thunder storm? But Parkinson's is an early riser and wont allow me this luxury, the pain forcing me to get up. So begins another day.

Businesses are winding down from another year, and as the 31st December looms not far away, the process of stock taking and closing the books for the year 2013 begin to take place. With many people out of work, the economy not in the best of shape, I notice shops dropping prices to move merchandise, maybe making a lower profit, but enabling them to stay in business.

The rain has now stopped and a blanket of silence has fallen over the house. I will leave you here for today, and make myself a hot drink. It's still only 05:45!

Don't Take Me For Granted

Just because I am at home most of the time, and rarely venture out, doesn't mean I should be taken for granted, and put on the bottom of the priority list. When a delivery service is sending a package, technicians from phone or cable companies, the gas man, or any number of maintenance or repair businesses, it is highly frustrating to be told they will arrive between the hours of 09:00 and 15:00. Do they really expect a person to drop everything and sit with baited breath waiting for them to arrive? Although admittedly I am housebound the majority of the time, it still irks me that one has to be tied down for so many hours. What do people do if they have a full time job?

Someone was supposed to deliver a parcel and having been here before, knew that I don't go out to work. I had been told he would arrive between 09:00 and 12:00, but by 12:30 there was no sign of him. I phoned the company to ask when I could expect the delivery man, and was informed he would be with me shortly. I waited and waited, was desperate to go and lay down for a rest, but with growing annoyance, had to wait. Eventually at 15:20 he arrived, as chirpy as anything, totally unaware that he had disrupted my entire morning, and I'd been unable to go and rest. He apologised for altering me on his schedule, but explained he knew I was always home, so thought I wouldn't mind. I was so angry as his presumption, but am too polite and told him next time to bear in mind, despite the fact I'm at home all day, I do have doctor's appointments, friends who come to take me out, and most definitely when I need to go and rest in bed, the last thing I want to do is sit watching the clock waiting for a delivery that should have arrived hours before.

I think he got the message, I just hope he passes it on to his fellow workers! 

Bogus Visual Barriers

One of the problems often encountered by Parkinson's patients is that the brain doesn't translate visual information correctly. In other words, one can see a visual barrier, that isn't really there, often met when attempting to pass through a door way, or a narrow corridor. The message received by the brain is that there is an obstruction in the way, and not possible to pass through a doorway. As odd as this may sound, it is a common phenomena, and one that can be worked on and resolved.

The brain views the wall, and seeing this is a larger expanse than a door, confuses the two and sees the door as an obstacle, instead of realising it's a door and that one can walk straight through. By perseverance and walking through this "bogus" barrier, repetition being the key to success, one can re-train the brain and be able to pass through the doorway without problem. Looking through the door at an item and focusing on that, distracts the brain and one can move forward easier.

The brain can also play tricks when looking at different floor surfaces, such as a change from tiles to wooden floor or carpet. Again the brain can see this as an obstacle, but there are simple repetitive exercises that one can do at home to improve the situation.

If you would like to learn about the various tricks and techniques to overcome this problem, take a look at Sherryl Klingelhofer's site who has vast experience in Parkinson's resources. Thank you Sherryl for sharing your very helpful advice and information.

Parkinson's Isn’t Only Physical

Yesterday was a long day indeed, spent at the hospital undergoing tests through the Gaucher Clinic. Thankfully I was not kept in, and in the late afternoon, we made our way home. Having two diseases makes diagnosing new symptoms very difficult. The continual question is whether a symptom is down to Gaucher or Parkinson's, or is it something entirely new? Anyone in a similar situation to myself, I'm sure will agree, it's far too easy to overlook a new problem when the focus is on the two diseases that have already been diagnosed.

If you think or have been told that Parkinson's is merely a physical problem; think again! Parkinson's is a neurological disease, and therefore it stands to reason that it affects far more than just movement. There are non-motor symptoms too which can be very debilitating, effecting memory, attention, problem solving and the ability to speak coherently and fluently.

This is where cognitive tests are important, despite patients being reticent in doing these exams which somehow feel humiliating, they are an extremely helpful way of determining how the disease is progressing. By having a cognitive test done early on, your doctor will have a baseline to work from. Cognitive impairment may be noticeable and irritating but does not alter the patient's life radically. Figures show that approximately 50% of Parkinson's patients will experience some form of cognitive impairment. Thinking abilities may decline, processing information may take longer, a drop in organizational skills, time management and altered visual perceptions (depth perception: the distance between objects). Anxiety and depression can exacerbate these cognitive deficits. I am glad to say that intellectual abilities however, do remain in tact. 

Needless to say there is a long unpronounceable name that the medical field have given to this slowed rate of thinking: 'bradyphrenia'. It's bad enough having Parkinson's, but not being able to remember and pronounce these impossible medical terms is thoroughly annoying.

I wish you an enjoyable weekend, and if you'd like to know what happens "In The Midst Of The Night", take a look at The Huffington Post.

On Elaine's behalf

OK, today's a 1st, today's blog is not written by Elaine, but by me, her husband. Elaine has been conscientiously writing every day, for almost three years and nearly always I read everything she writes, I have never myself blogged, so here goes. "E" as I call her (amongst other things) didn't want any of you, her readers not to find a post this morning, and so this is the reason I am writing, she wasn't able to blog today, as she is spending the day in hospital, (mind you so am I) she is having some tests done. I hope they don't keep her in, and that she'll be sent home. if not I won't have anyone to talk to on the journey. I wasn't sure what I was supposed to write, but Elaine gave me an idea, so here goes!

For as many hours that Elaine has spent in hospital, I have spent a considerable amount of time too, not as a patient, but driving her there and back, waiting for each test with her, seeing the doctors and making sure she doesn't forget to tell them things, running to the cafeteria for coffee and sandwiches, sometimes I feel like a gofer who doesn't get paid, and instead I miss a day's work. I wouldn't let her go alone though, so this is how it is. We have it worked quite well, we get up early I drive, she sleeps on the way, we get to the hospital and sometimes I manage to check emails or make some calls for work, while she is undergoing some long test, then we drive home and she sleeps again if it's been a long day.

Quite often when at the hospital "E" will need to go from one department to the next but some piece of paper has been forgotten and needs to be with her before the next test, here I turn from driver/caregiver into the "gofer" most often I manage to get the missing paperwork before she has made it to the next waiting room, I tend to move quicker than her. She doesn't know how I do it. So here's my secrets to navigating the maze of hospital offices. Smile, joke and smile again, it normally works as they (the clerks) don't expect it. Who in their right mind is happy in a hospital trying to chase papers. NOT me and I'm not the patient. But I find a smile or two and my good sense of humour gets things done really fast.

So while I'm here still waiting for the missus think about next time you need to go a hospital, smiling makes it much more bearable.

Hope you all have a good weekend.

The Gofer.

Jeremy Clarkson - Top Gear

Calling Jeremy Clarkson, the marvellous presenter of the popular British television programme "Top Gear", that all men who are really little boys at heart, love to watch, and would love even more to have Jeremy's job. Trying out all sorts of fabulous cars, driving around the world, having adventures along the way, not to mention the great enjoyment of blowing up a caravan or two, is most men's idea of a dream job! We thoroughly enjoy the programme and never miss an episode.

I wrote some time ago for The HuffingtonPost about the difficulties in finding a small inexpensive car that would take a standard size wheelchair in the boot. Most car showrooms, including their staff and shiny catalogues that must cost a small fortune to produce, (putting aside how many trees died in the process) go into great detail of every aspect of a car, except the fact of whether a wheelchair will fit into the boot. I really do think this issue needs to be addressed, and sales people informed of what make cars and models can accommodate a wheelchair.

I am appealing for your help in rectifying this lack of information, that would help so many like myself. I have been inundated with e-mails from people all over the world wanting to know what car we bought and which cars have boots large enough to take a wheelchair. 

Being at the end of one's rope

Some days are easier than others. There is no forecast or warning if a day is going to be a good one or bad one. Parkinson's in its own inevitable way decides when and where it will drive you to distraction, sometimes leaving one at the end of one's rope. If I have plans or we've been invited somewhere and suddenly Parkinson's decides to step in like a whirling dervish disrupting my day, cancelling arrangements is often the only option. This is where it is crucial that family and friends understand  and realise the effects Parkinson's can have on one's social life.

We have often had to leave early and disrupt a pleasant social evening with friends due to Parkinson's, which is not a nice feeling, and I hope everyone appreciates my circumstances. For someone who knows nothing about Parkinson's, it would be hard to comprehend what is so difficult in sitting at a dining table surrounded by friends, interesting conversation and good food. Yet for the person suffering from Parkinson's, on a bad day, it can be very awkward, a grueling experience, and simply down right uncomfortable.

Nothing is simple or easy when it comes to Parkinson's and at times it's like being at the end of one's rope.  

Fatigue

Unless you suffer from extreme fatigue, you can't imagine how it rules your life. Fatigue is one of the symptoms of both Gaucher disease and Parkinson's, so I am cursed twice and unlike Cinderella who gets to stay out till midnight, I'm lucky if I make it to 10 p.m. Maybe this is because I don't own a pair of glass slippers, or have a fairy Godmother, but I'm pretty sure it's down to receiving bad DNA. I normally start to fade around 8 p.m. and try to stay awake until 10 p.m. at the very least, before I flop into bed. My head barely touches the pillow and I'm asleep, only to awake several hours later by insomnia and then whilst everyone else in my household are tucked up in bed, blissfully in the land of nod, I write or recently have taken to baking in the wee hours. If I get six hours sleep at night, it’s a miracle, but usually its less.

I try to rest in the afternoons, my eyes desperately stinging and if I am particularly exhausted I may be lucky and drop off for an hour. Around this time of day, for some strange reason, it is often with great irritation that the phone rings, waking me after having only just fallen asleep. When I hear the voice of the automated cold call, I slam the receiver down, as if making my exasperation known loud and clear, but let's face it, the company don't know or care who they are disturbing. I don't think anyone listens to what they are saying or trying to sell. I wish there was a way of blocking these annoying calls. Now wide awake and angry knowing I'll not get back to sleep, I resort to getting up and making a cup of tea. Most things seem better once you've had a nice cup of tea. I don't know if it's a British thing, but in any disaster, crisis or moment of desperation, there is something distinctly soothing in having a cup of tea.

How Do You Feel?

Have you ever been asked "And how does that make you feel?" This annoying question often posed by psychologists trying to ascertain what their patient thinks about a particular topic, can really rub one up the wrong way. How would anyone feel being diagnosed with Parkinson's at a young age? Angry, devastated, sad, horrified, disbelief? The list is too long, but not hard to guess. If someone were to answer otherwise, I think there would be something seriously amiss. So in hindsight maybe the question isn't so futile.

However I have to give credit where credit is due, and understandably a concerned doctor sent me to a psychologist for he was worried I was either in denial or didn't fully comprehend the seriousness of my situation. Being an unusual case, suffering two chronic diseases, doctors have found it difficult to understand how I keep so positive and cheerful. Complying with his request, I dutifully went along to see a psychologist. Entering his office with my usual smiling face, I was met with a very worried expression. After explaining in great detail about Gaucher and Parkinson's, the psychologist knew I understood completely and wasn't in denial. He wrote in his file that I have an "unusually healthy mental attitude".

I was reminded of this story by a fellow "Parkie" who read my article recently in The Huffington Post: "These Shoes Were Made For Walking", and like myself, loves shoes! Who needs expensive therapy, when you can go out and buy pretty shoes? 

Neuroscience and Gratitude

If you have been following my blog, you will know that I am a great believer in always looking at the glass half full, finding the silver lining in everything, being grateful and counting one's blessings. I was therefore very interested to read an article expressing the way by which I live, and various studies that were made proving this point.

Being content and grateful is a little contagious I think. Take a simple example, such as smiling at someone, for they will undoubtedly smile back. If you talk to someone in a whisper, the chances are that they will answer you in a whisper too. Of course the same applies to yawning, and if you yawn, you're bound to make someone else yawn. 

The old saying "What goes around, comes around" comes to mind, or as a film depicting the same philosophy of "Paying It Forward" spelt out so clearly that treating others how you would wish to be treated really does work.

You may like to read my latest article about losing confidence in the on-line paper - The Huffington Post. I wish you all a very good weekend.

Losing Confidence When Going Out

It's easy to lose one's confidence suffering Parkinson's or any serious illness. When  first diagnosed I came across several people who'd been living with Parkinson's for some years and were already experienced with the many symptoms and problems that occur as the disease advances. One particular change puzzled me, which appeared to be a lack of self esteem and confidence. Many people with Parkinson's stop socializing and going out. The huge change is noticeable, when someone might originally have been very sociable and the life and soul of the party.

Speaking from experience, I can now understand how losing one's confidence and retreating from the world can happen. I have written before about losing one's voice, sounding hoarse, speaking quietly, along with a monotone and slow speech. This would without doubt make anyone cautious of speaking when amongst others, causing complications with socializing. It's not surprising that a Parkinson's patient who once might have been vivacious and talkative, suddenly will sit quietly like a wall flower.

One's physical appearance can make one lose confidence. The shuffling when walking, hunched shoulders, a stiffness and rigidity of movements, all make one self conscious and uncomfortable entering a room a room full of strangers. If people are unfamiliar with Parkinson's, they will not realise what is wrong, and sadly through lack of empathy or understanding, as if one is contagious, they will keep their distance. This is hurtful and enough to discourage any Parkinson's sufferer from venturing out.

Eating in company is another problem; the thought of dropping food, making a mess, and taking longer to eat than anyone else, unfortunately aid losing confidence.

I am in this very situation myself, and I do not have an answer for you. All I can do is tackle each day at a time and do the best I can.

Be Ready

I always like to think ahead and prepare for every eventuality. Although this isn’t always possible, I do the best I can. I mentioned in a previous blog, that I have a special bag always packed and ready, for I've been hospitalised on frequent occasions through the ER. Often with little warning I suddenly am admitted into hospital and having a bag ready saves a panic hunting for things and hoping I haven't forgotten anything. It's a little like a pregnant lady in her 9th month, who has her bag packed, so that when the time comes, all she has to do is grab that bag and get to the hospital post-haste.

A few of you have asked me what do I keep in this bag, so here's a list of items I generally take to hospital:

A full week's supply of my Parkinson's medications.

Two copies of a list of my Parkinson's medications, listing name of pills, dosage and time to be taken (I give one to be put in my file when arriving in the ward, and another is attached to the chart at the end of my bed. I ensure to write in large red letters on this list the few medications I am allergic to.

Ear plugs in case my room mate snores, and if she doesn't then I can hand them to her, as I've been told I snore like a midnight symphony, (and not a good one!) but I'm sure it's not true. Sounds far too unladylike.

Old slip on house slippers.

A small pad of paper and pen (I'm a writer - I never go anywhere without paper and pen!).

Tissues.

A wash bag with small travel size toothpaste, toothbrush, hairbrush, a small hand mirror and a scrunchie should I need to put my hair up.

Hand cream.

Lip balm.

Wet wipes (super important - never go anywhere without them).

My mobile phone on a cord so that I can wear it around my neck.

The phone charger.

An MP3 player so that I can listen to music and its charger.

A large plastic bag to put my clothes in and another to put my shoes in.

Fresh underwear for the day I am released and  come home.

A small empty plastic bottle that can be re-filled with water from the fountain in the ward so that I have water available on my bedside table should I want to drink or take my Parkinson's medications.

A Sense Of Fun

Keeping cheerful and young at heart, thankfully to me seems to come easy. I can't explain why, but this is obviously a deep integral part of who I am. As they say, "laughter is the best medicine" and I am blessed to have a husband who not only continues to make me laugh after being married almost 25 years, but also has a young spirit.

We've all played the "staring game" as children, staring at one another to see who gives in first. Well I might no longer have the strength to pillow fight, but I'm a winner when it comes to the staring game. My eyes barely blink, and with my frozen expressionless face - I win hands down!  

You have to find things to laugh about, and trying to look at life from a different perspective and find a silver lining in everything is the only way I know how to carry on. Writing keeps me very busy and has given me purpose and a sense of achievement. If it were not for my writing, my story may be a very different one.

When I was a little girl, I found a bottle washed up on the sandy shore of the beach where we would spend most weekends and holidays. I opened the bottle and found it quite dry and airtight. I decided to write a note which I placed inside and closed the screw top tight before throwing it back into the sea. I watched for a while as it bobbed up and down and eventually out of sight. I wonder if anyone ever found my message in the bottle. I know it's probably one in a million chance, but If someone out there ever found a bottle with a note in a child's handwriting (a poem making a wish) - maybe send me a message, but I suggest a more reliable and conventional method via e-mail.

Change Is Good

In our post office, they very thoughtfully have put quite a number of seats for those waiting, who cannot stand for long. However, when I saw how low the chairs were, I didn't even attempt to sit down, for I knew once seated, it would be incredibly difficult for me to get up again. A lady pointed to an empty seat, indicating I should sit down, but I politely declined explaining it was far too low. It's a shame that the post office went to the bother and expense of putting chairs for those waiting, yet didn't think of making them a regular height.

At a local pharmacy, there is often a long queue, but there were no seats. I was there on a particular busy day, and could see I would have to stand and wait for quite some time. I asked one of the workers if there was a chair somewhere so that I could sit whilst waiting. The young man kindly brought me a chair enabling me to sit down. I was there again yesterday, and much to my delight found they had put a few chairs of regular height for those who need to sit whilst waiting. Well done to this pharmacy!

I notice small changes here and there, and I think in general people are becoming more aware, taking into account not just the needs of disabled, but the elderly, pregnant ladies or anyone who might find it difficult to stand whilst waiting.

I was in a small clothing shop the other day, and wanting to try something on, I was pleasantly surprised to find a chair in the changing room, despite the small premises. The sales lady was also most helpful and ended up accompanying me in this tiny space as she could see I needed help and was alone that day. It's a good feeling when you come across accommodating circumstances and people who are caring.

A Smashing Good Time

My family has become accustomed to the occasional broken glass or dish, and Parkinson's make's me very wary of using our best crystal wine glasses, especially  any particular item that is fragile or made of bone china. We did have 24 matching wine glasses a few years ago, but since the arrival of Parkinson's in our lives, the number has mysteriously dwindled, leaving just a few remaining. My sister-in-law thoughtfully took me for an outing which was a most welcome and enjoyable break to get out of the house. Inquiring where I'd like to go, I asked if she'd mind a visit to …. well I won't mention the shop's name, but you know the one I mean, that is huge, bright blue and yellow, has unpronounceable names on their products, some leaving me wondering what on earth they are for, and a fortune of walking involved as you follow the path around the entire store, to ensure you take a look at all their products and hopefully purchase something before you leave. Thankfully they have their own supply of wheelchairs and motorized carts which is of great help. If you happen to work at this shop - thank you for taking into account those of us who are less mobile, and also for thinking of making a toilet for the disabled, but perhaps you need to see to the disabled toilet door, for it's unbelievably heavy. So now we have re-stocked our wine glasses, I'm ready for a party and a "smashing time"!

I was given a very sound piece of advice the other day from a fellow 'Parkie', and with her permission I'm sharing it with you. Soap dishes or dispensers made from china or glass in your bathroom that sit on a porcelain washbasin, can easily be dropped and apart from breaking the soap dish itself, if the angle is right, you can also end up cracking or chipping the enamel of your washbasin. I had not thought of this, but fortunately don't have china or glass soap dishes. The same applies in the kitchen for we have an enamel white sink, so it's best not to use any glass washing up liquid dispenser and stick to plastic bottles, less attractive I'd admit, but safer and less expensive than replacing a cracked sink.

Someone I care very much about is in hospital, and knowing he reads my blog daily, I would like to take this opportunity of wishing him a speedy recovery, and hope he'll soon be released and can return home to his family. 

Life's ups and downs

Life generally never stands still, and putting health to one side for the moment, everyone experiences ups and downs, and events take place that we often have little control over that occasionally throw a spanner in the works. We make plans and have schedules, appointments and lists of things to do, but invariably when things go awry, one has to stay flexible, and go with the flow. It’s no use fighting upstream a strong current that has a will of its own. So it is with life, you sometimes just have to let things "go". Although ill health will naturally govern most of one's day, other affairs can sometimes take over, and coping with everything can get a little overwhelming.

Making the most out of the good times, the happy moments that bring us joy is all the more important. Friday is my favourite day of the week, as this is the day that my  husband usually doesn’t work, and this is our special alone time together. Whether it's doing things together around the home, or going out to one of the many little cafes in our area for a cup of coffee, it doesn't matter what we do; just spending time together is what brings me pleasure and is important.

Shoes ….what woman doesn't love shoes? Years ago I used to wear high heeled stiletto shoes, but these shoes were not made for walking …. hence my topic for this week's article in The HuffingtonPost.