The sandwich generation

We are often called the 'sandwich' generation, for whilst still bringing up our own children we find ourselves additionally taking care of aged parents. My daughter may beg to differ, for she has unfortunately received a double dose, and possibly a 'double decker' sandwich would be more fitting a title in her case. My daughter helped me take care of my mother as her health declined due to dementia which pushed us all to our limits despite our love and devotion to her, and unexpectedly now finds herself for some years also looking after me whist I battle Gaucher and Parkinson's. Being a child with a sick parent is not an easy position to fill and part of her childhood inevitably has gone by the wayside. A child grows up awfully quick, learning life skills and taking on responsibility that far outreach their age or level of experience. I have seen this in other families who are in similar circumstances, and there is a huge difference in maturity and abilities that most children with healthy parents are not exposed to. I often feel guilty that she has not lead a normal care free childhood, but what she has gained is beyond measure; a wealth of experience that has prepared her for almost anything life should throw her way, making her a remarkable young woman.

Michael J. Fox Interview

In a rare personal interview, Michael J. Fox, who was diagnosed with Parkinson’s at the age of 29, tells us of his journey and how even if he could go back in the De Lorean Time Machine (from the film “Back to the Future”), he wouldn't change a thing. Our destinies are not always what we would have hoped for or imagined, but Michael has embraced Parkinson’s’ with the aim of raising funds to find a cure, and through a great television show “Curb Your Enthusiasm” with his unmistakable humour and charisma, brings greater understanding to the general public of this life changing disease. Please take the time to look at this interview link, and pass it on to as many people as you can to raise awareness. I have a small voice, but luckily with a well-loved celebrity such as Michael J. Fox speaking for us all, Parkinson’s has been given a world stage to get our message across. Keep up the good work Michael, and as a fellow sufferer, I congratulate you on your strong determination, drive and initiative. You have brought us many hours of pleasure through films and television, and are now possibly doing the most important work of your life. You give us hope! 

Answering your questions

I have been flooded with questions, all basically about the same topic: insomnia. Clearly a lot of Parkinson’s patients our there are suffering from this most irritating and exhausting symptom. Forgive me for answering you all together in today’s blog, for I usually answer every e-mail personally, but typing is becoming difficult for me and writing the same reply to 23 people seemed a little silly. I am not a doctor and have no medical training, and just want to make it clear that I am simply a patient who is sharing information, useful tips and my personal experience with you. Every patient is different, so what medicines work for me, may not necessarily work for you. In answer to your questions: The pill I take at night is called Clonazepam (generic name), which I now take one hour before I retire. I had been taking it too late at night and it was therefore not as effective. The Dopamine also has been spaced out at four hourly intervals during the day, making sure I don’t take it too close to eating food, in particular protein. I try and wait a whole hour after taking the Dopamine before eating. Sometimes this cannot be avoided, if one is going out or eating at someone’s house. I am in the fortunate position of being under the care of a very good neurologist, and whenever he suggests a change of medications or schedule, I know that he has my best interest at heart. Thank goodness, this combination is working and I am sleeping around 6 hours a night now, instead of 2 or 3 hours! A huge difference!!! If you are suffering insomnia, speak to your doctor on your next visit and ask what changes you can make to help alleviate this symptom.

To err is human

“To err is human; to forgive, divine” is a well-known quotation from an essay written in 1709 by Alexander Pope. How many times have we heard this, but do we really take it to heart? No one is perfect, everyone makes mistakes; doing what we think is best at the time, making a decision in haste not thinking about the repercussions, or simply speaking without thought or consideration for the other person. We are all guilty at one time or another of small indiscretions, but this is part of what makes us human. Realising we've made a mistake and owning up to it, making amends where possible takes guts and maturity enabling one to move forward. Holding onto old wounds, anger or bitter feelings ultimately only causes damage, and is an unhealthy negative cycle. By letting go and forgiving, you in fact release yourself from that burden. I have the habit of speaking the truth; it’s in my nature. If I can’t say the truth, I would rather not speak at all, and sometimes this is not received well, so if I have offended someone by being brutally honest and truthful, I apologise. A new day can be a fresh start – it’s never too late to turn a page and begin anew. Life is not simple, relationships are often complicated, and the road on which we travel can be a bumpy unpredictable ride especially when suffering chronic disease. I wish you all good health.

10 Things not to do

Everyone has a “to do list” – well at least most of us, but how many have a “not to do list”?

1. Don't leave a glass perched dangerously close to the edge of the table.
2. Don't buy more ice cream, as you know who'll finish it! 
3. Don't try getting dressed when still damp after a shower - it's just impossible.
4. Don't let everyone leave the house in a hurry in the morning before dressed, or it's all day in pyjamas again!
5. Don't walk too close to the dog's water bowl - the floor is slippery.
6. Don’t walk on a crowded pavement. No one notices a lack of balance.
7. Don’t forget to take medication, otherwise memory fails and I’ll repeat no.2 on this list!
8. Don’t attempt painting fingernails again – big mistake.
9. Don’t put a cake in the oven and forget to set the timer.
10. Don’t assume everyone else has also lost their sense of smell !

Now for something to put on your "to do list" - an entry from my blog appears on The Itima blog site, so you are welcome to take a look and leave a comment.

"Parkinson’s, shaken not stirred" on radio

I gave an interview on Triangle VarietyRadio, an Internet Radio talk show that has an  interesting programme called “The Author’s Corner" hosted by Elaine Raco Chase, which is aired every Thursday night between 8 - 11 pm Eastern Time. This prime time station is based in Person County, North Carolina/USA; having over 40,000 Google hits, so clearly a growing and popular show. They touch on domestic and international topics, business experts and authors.The talk show is aired live; several guests on line together with Elaine, along with pre-recorded interviews due to time differences. Elaine interviewed several up and coming authors, and the questions and debate was lively and entertaining, hearing directly from those who love to write, what spurs them on in such a difficult industry today, and how the entire publishing business has changed over the years due to technology and in particular the electronic book. The question of audio books appeared a hot topic, particularly for those with impaired vision. Elaine introduced me and spoke about my mystery/adventure book (fiction) "Slipping Through Time" and then went on to interview me about my book  “Parkinson’s, shaken, not stirred”, available on Amazon, the book “I’ll Blog Till I Drop” available for FREE on Smashwords and my most recently published book “A Silver Lining” (also available on Amazon), about living life to the full despite suffering two chronic diseases. If you would like to listen to the show click on this link. The show is over two hours long, and I am introduced towards the end (I come on at just over two hours into the show) The link shows the time in minutes, and I start at around 122 minutes if you want to use the slider to fast forward to my interview (which is approximately 8 minutes long). I hope you'll listen to the POD Cast and enjoy the show. Thank you Elaine for having me on your show.

Caregivers are heroes

I want to acknowledge anyone who is a caregiver, for it is a thankless position that can’t be added to one’s curriculum vitae, nor does one receive job satisfaction or financial reward. The hours are long; constant challenges tiresome, no vacation or time-out, it is a 24/7 job. There is no course or studying to prepare the caregiver for what lies ahead, and no diploma awaits, despite the wealth of knowledge and life experience unwillingly gained along the way, that would suffice for a university degree. It’s the kind of appointment that one didn't ask for, never dreamt of taking on, and yet many around the world, tirelessly day in and day out perform their newly given task of caring for a person they love. Often family and friends are unaware and barely know what a caregiver goes through. The mental anguish alongside the daily logistics and physical work involved with taking care of someone who is chronically ill, takes great strength of character, devotion, much patience, a sense of humour and a lot of love to fulfil this unwelcome task. If you are a caregiver – you are not alone, for there are millions of people who stand in your shoes, and I applaud you all. Stay strong and take one day at a time. Remember that you are a hero!

J. Conrad Guest

I have been in contact with the esteemed author J. Conrad Guest whose successful career has so far produced many wonderful novels such as : The Cobb Legacy, One Hot January, January’s Thaw, Backstop: A Baseball Love Story In Nine Innings to name just a few. I want to share with you a beautiful paragraph, I found poignant and poetic that Conrad wrote:

"Strange how life unfolds. When we’re young we see life as limitless. Like the morning sun climbing the sky, we grow stronger each day until we can’t help but believe it will always be so, but declining at the moment we reach our own zenith, to approach a rapidly approaching horizon, to eventually dip beneath it, our hope and belief that we will again arise, even if on some other plane of existence."

Apart from sharing a love of books and writing, we found that sadly we have something else in common; Conrad’s beloved mother was diagnosed with Parkinson’s at the age of 52. As many of us have found, the tables turn at some point in our lives, roles are reversed and our parents who once competently took care of us, need us to care for them. Conrad has written with great honesty a heartrending piece about his mother’s decline with Parkinson’s, demonstrating the love between mother and son. Conrad would like to share this story which appears on his blog entitled “Mother’s Day”, (you’ll have to scroll down to the third page). If you have PD or are a caregiver, you will relate completely to what he has written. Please feel free to leave a comment on his blog.

The Thought Broiler

I have come across some amazing people over the last year or two, many of whom are doing incredible work, either as a professional business, or like myself on a voluntary basis, and campaigning for a cause that lies close to their heart. When the world seems to be in such chaos, it gives one hope and is heart-warming to be in contact with people striving for a better tomorrow. I came across a website run by Susan Placek and who is co-owner of “The Thought Broiler” and who began The Creative Idea Shop . Susan has very kindly let me appear as a guest blogger on this inspirational site that posts only uplifting, positive subjects that reach out to people. Susan’s favourite saying is “if given lemons, make lemonade”, and I too love this sentiment, for it is one of the lines that I used in a poem for “Parkinson’s, shaken, not stirred”.

“If given lemons, make lemonade,

How true a saying is this?

I enjoy the life, that I have made,

No opportunity or moment missed.”

(An excerpt from the poem “Battles” Written by Elaine Benton © 2011)

Handle with care

I've always had difficulty in travelling, especially flying, sitting in cramped conditions, almost unable to extricate myself from my seat, particularly when the passenger in front of me decides to recline and sleep practically in my lap. As with a good bottle of Merlot wine, I do not travel well. However, I'm starting to think that I should have a label around my neck, not dissimilar to Paddington Bear, (a children’s much loved fictional character) who wore a label that read “please take care of this bear”, but my label would say “handle with care”. I have an old dish in the shape of an apple that has been cut in half that I use to put honey in when serving at the table, but noticing a slight crack in the fine bone china, I am hesitant to use it. It’s still lovely, holds sweet memories of all the years I have used it, but now in its delicate state, I handle it with care. My old china bowl and I are no longer shiny and new, and our glorious youth is in the past, but we’re still here, and continue to bring a smile to those around us. Life doesn't stay the same, it is constantly changing for us all, but I hope and wish that life remains sweet; may you follow your dreams, be blessed with good health and find the peace and happiness we all long and search for. 

Free Book

To celebrate writing my blog for an entire year, the complete entries have been turned into a book entitled: “I’ll Blog Till I Drop” which you may download for FREE from Smashwords in whatever format you need. Once you are on Smashwords website, type “Elaine Benton” in the “search” box at the top right hand side, which should take you directly to my page. Please pass this on to anyone you know who is suffering Gaucher, Parkinson’s or any chronic disease, and caregivers. My intention is to spread the word and offer support. You can help me create greater awareness simply by downloading my free book and passing on this information to anyone who may benefit. It’s a lonely fight, a solitary soldier battling Parkinson’s alone, but together in numbers we gain strength and can be triumphant. Have a good weekend everyone!

Getting forgetful

It appears of late, that I have forgotten several important dates and find this most annoying, since I always used to remember everyone’s birthdays and anniversaries off by heart. Is it the ageing process or Parkinson’s, or simply too much going on in this head of mine?  Anyway, if I've forgotten your birthday, anniversary or something else – I do apologise. I was at a regular check up with my neurologist the other night, and whilst sitting there, the alarm went off on my mobile phone to remind me to take my pill, which of course I had forgotten to carry with me! We had a good laugh (at my expense), and as it was painfully clear, there was no need for the doctor to ask about my memory! Although I was diagnosed with Parkinson’s five years ago, and have been on various medications since, I am still constantly surprised at how a neurologist can finely tweak one’s regime of pills, which can make quite a difference. The doctor listened attentively and very patiently whilst I wriggled on the chair reading the things I wanted to tell him from my list, that he has now become accustomed to seeing upon my visits. By him simply changing the timing of my medications and just adding an extra half of one pill a day, last night I blissfully slept for six hours and awoke not feeling groggy! I can’t tell you how wonderful it was to wake up and see that it was already light outside, knowing I hadn't been sitting for hours, as I do most nights, in the middle of the night writing at the kitchen table. I am quite sure he doesn't read my blog, but on the off chance he is today – I just want to say THANK YOU!

My warrantee has run out!

I want to lodge a complaint; to whom, I'm not exactly sure, but this body of mine just doesn't work properly, and my warrantee has run out, as if I ever had one in the first place! When your stove, fridge or mobile phone stops working and need to be fixed, if the said item is still under warrantee, you simply return it to the shop and hopefully they are able to fix the problem or you receive a new replacement model. Wouldn't it be wonderful if you could do the same with your body? Just imagine going into a clinic and saying, “ I'm dissatisfied with this body; it doesn't work properly, it’s got Gaucher and Parkinson’s. I’d like to exchange it for model that is healthy, and if you can give me an upgrade at the same time, that would be great!” This non-existent futuristic clinic (a crazy thought, but I'm sure you also wish one existed) would try to fix the glitch. Unable to, they would simply give you a new body. The phone companies, when issuing you a new phone, transfer all your numbers and data over to the new version, so this imaginary clinic of mine would take my spirit and soul and transfer it into a healthy working body. While they’re about it, maybe they could make me a couple of centimetres taller and remove those extra few kilos that I just can’t budge! What do you think? I think I've been watching too many science fiction movies!!! Don't worry I haven't gone crazy, it's just that at 02:15 when one can't sleep, I guess some strange ideas come into one's mind!

Mental Health

All chronic diseases have various elements, one being mental health issues, which often get overlooked, especially when the physical symptoms of chronic disease can be so disturbing and clearly visual. I think it is important, as a patient and even more so as a caregiver, to try and be aware of mood changes, noticing alterations in character, and any anxiety or worried thoughts which may actually cause physical distress. It is imperative for Parkinson’s patients to remain as calm as possible, in a stress free environment, but clearly living in today’s world, this is not always feasible. However it is essential I believe, to at least be aware of the situations or times that make you more anxious, and see if anything can be done to alleviate these moments. Depression should also be taken seriously and if signs appear of sadness and a general lack of interest, this is a very common and normal symptom of Parkinson’s. Do not be embarrassed to discuss these matters of mental health with your family or your doctor. There is nothing shameful, and with a wide range of medications on the market today, a suitable solution may be found and alleviate this symptom. Parkinson’s has so many different unpleasant symptoms and speaking as a sufferer who experiences a full array personally; if you have the ability to remove even just one symptom– it could make a real difference to your quality of life. 

Cognitive Testing

Embarrassing as it is, a cognitive test is part of a necessary process enabling your doctor to have a base line from which to work. Although highly demeaning and no one likes to feel belittled, a cognitive test is a good way of assessing one’s mental capacity. Repeating the test a year later shows indication if there is decreased mental ability. Occasionally I must admit I can feel that my attention span is short, and sometimes I have difficulty finding a word (despite being a chatter box by nature). Slowness in thinking and memory loss are also noticeable, so family and friends are becoming very forgiving of my mistakes. Being tolerant and patient with someone who has Parkinson’s is very important. It’s bad enough battling this disease day in day out and on occasions feeling like one is “losing it”, but on top of that, having someone make you feel like an idiot, when they should be acutely aware of your failing mental state, is simply cruel. A lack of tact or thoughtless negative comments can have a tremendous detrimental effect on a person with Parkinson’s. Keeping cheerful and having positive thoughts and surrounded by good energy is the best defence to battle against this rotten disease.

Pain Clinic

Being in constant pain is very tiring and wearing, making it difficult to be in the company of others. I understand only too well, there’s nothing that makes people more uncomfortable than being in the company of and seeing someone in pain. The Gaucher and Parkinson’s disease are having a grand uninvited “pain party” in my body and I have been advised to go to a special Pain Clinic where hopefully they will be able to prescribe me something suitable for long term pain management. Anyone with Parkinson’s can relate to the stiffness and rigidity that are classic painful manifestations of the disease, which unfortunately do not get easier as time goes by. Add to that bone pain from the Gaucher’s and you have a blended cocktail of agony. Exercise, if one is able to stick to some sort of regime is the best way of warding off this downhill spiral and keeping as mobile as possible. Having Gaucher, I am limited in the exercise I am able to safely do without damaging fragile bones and joints, so I find myself in a bit of a catch 22 situation. Gaucher and Parkinson’s are definitely not a good combination, and one antagonises the other. Professional pain management can improve quality of life so it’s well worth going to a Pain Clinic where they specialise in this field if you are suffering chronic pain on a constant basis.

It’s Friday again

Friday is my favourite day of the week, because it’s the beginning of the weekend, and a day that I get to spend with my husband. The weeks and months fly by so fast, the summer is drawing to an end and here we are, already in September. Life is awfully short, so make the most out of each moment, don’t put off tomorrow what you can do today, and if you get a chance to spend time with people you love, jump at it. I spent quality time with someone special yesterday, having lunch together we chatted away a few hours. Being with people who make you feel good and that you enjoy their company is like a dose of good medicine. Have a wonderful weekend wherever you are and enjoy, relax and have some fun. Here is a poem I wrote in the early hours of the morning whilst you were all peacefully sleeping in your beds (unless you too have Parkinson's and find yourself awake half the night!). Just think of all the Parkinson's patients awake around the world, if we could somehow get together, we could have a global party!

It takes but a thought, an original idea,

Setting in motion, wheels begin to turn,

Aspirations and ambitions born,

Following our dreams we yearn.

But when chronically ill,

Your path is not clear,

To find reason or rhyme,

Hope answers will appear.

There’s always a silver lining,

No matter how thin it may be,

That if you look closely,

Something unexpected you’ll see.

Written by Elaine Benton © 2012

An entire year

This past year has been a journey of sorts and it is exactly 12 months since I began writing my blog on 6^th September 2011, with the purpose of offering support and comfort to fellow sufferers and caregivers or anyone going through difficult health issues. Talking candidly and honestly I hope I have made you smile, helped in some small way, so that you realise you are not alone. Keep positive, and never give up the fight, and let’s hope and pray that a cure is not too far away. My intention has been to reach those who for whatever reason are not able, or do not have access to join a support group. Knowing you are not alone in your daily struggles with a debilitating disease is important to us all. What I didn't realise when reaching out and getting people’s attention worldwide, was that surprisingly like a boomerang, I would receive support in return. I am truly thankful to all who have read my blog and made contact with me. Your presence, be it through a computer screen, has been felt, appreciated and indeed an unexpected wonderful gift. Thank you! I shall carry on writing my blog and look forward to continue sharing my journey with you all.

Shocking the neighbour

I had ventured outside, feeling the sun on my face and warming my aching bones; I decided to sit on a bench, just meters from our front door. A neighbour I have not seen for some time happened to be walking towards me; staring at me with a quizzical look on her face, and without thinking raised her hand to cover her gaping mouth as her eyes opened wide suddenly realising it was me. Have I changed that much in the last few months? I thought not, but seeing her shocked expression, gave me the distinct feeling that I do look different. We all age, none of us can stop the passing of time, and I believe the fountain of youth has yet to be discovered. As for all those anti-wrinkle creams – well Mother Nature must be having a good laugh at us ladies who purchase these products with the belief that they’ll actually work. But let’s be honest, chronic disease does take its toll, and needless to say those who don’t see me on a regular basis are bound to notice changes. To cover her uncomfortable slip-up, I quickly said “hello” and asked how she and her family was. Before she answered me, she leant forward and touched the sleeve of my T-shirt, pointing out that I was wearing it inside out! So now I am left wondering, was she shocked at how I look, or at the fact I had my top on inside out. Maybe it was both; I guess I’ll never know. The moral to this story, is to have a mirror on the wall by the front door, so that you can take a quick look just before you step outside!

The Intima Journal

The Intima On-Line Journal is a wonderful source of information relating to narrative medicine which was started by students in The Narrative Medicine Master’s Program at Columbia University. As a result of their studies, this journal was created and covers a wide range of self-expression between patient and doctor. I have written a short piece for their magazine and if you’d like to take a look, click on this link: The Intima. Narrative medicine is fast becoming a hot topic, and the realisation of its full potential could very well change the ways of future medical practice. Many doctors, who are truly skilled and dedicated, automatically use these techniques without even realising, which in my mind is a sign of a great doctor. Through observation much information can be gleaned, and to a trained eye, and a listening ear, in a matter of minutes a skilled doctor armed with this additional information can make a speedier diagnosis, and if a referral to a specialist is required, precious time is not wasted. In a limited time frame this is probably all that is possible, but listening to a patient's entire story takes time and patience, and this is where a written narrative comes into its own. My book "Parkinson's, shaken, not stirred" does exactly this, covering most topics related to living with chronic disease. I specifically made it a short book, enabling the reader to quickly read all the poems within, depicting what I go through both physically and emotionally, which in a sense is the essence of narrative medicine. I explain all, for often there is no time for an in-depth patient / doctor dialogue during an average appointment, due to time restraints, which we all know can be as short as ten minutes. For those who have read my book or daily blog, you will have a fairly clear picture of my situation which I suspect many patients can relate to around the world who find themselves in similar situations.

Today is a new day

After my ‘pity party’ yesterday, where in a moment of weakness, I allowed Parkinson’s to get the better of me, I have pulled myself together. We all have good and bad days, and hopefully more good than bad. It has been my intention from the very beginning of writing this blog that I speak honestly and share everything with you. There is little point in me telling you all is fine and dandy and painting a false rosy picture. It is unrealistic for anyone to stay cheerful every minute of every day - it is not possible - not even for me - the eternal optimist. This is not what you want to hear, and I believe you deserve to hear the truth about how it is to live with chronic disease. However, today is a new day and “ I'm back” in full force! You can’t keep me down for long, and this morning up at the crack of dawn, full of vigour and spirit I wrote the following poem.

Parkinson’s a hungry scavenger appears,

Feeds upon worry, anxiety and fears.

Speeds up and takes over, if you give it half the chance,

Any invitation; quick as a flash will advance.

Don’t give in and don’t give up; stay strong,

Keep cheerful and positive all day long.

Fight with all your strength and might,

Clad yourself in armour, battle and fight.

This is a war I’m determined to win,

Despite the odds looking rather slim.

Parkinson’s will not triumph; it’s got it wrong,

We’ll beat it together, in numbers we are strong!

Written by Elaine Benton © 2012

Even I have bad days

When you hear the name ‘Parkinson’s’ most people envisage shaking, but don’t realise how debilitating and degenerative this disease is. I have a tremendous fighting spirit and try to stay positive most of the time, but when I can see and feel myself deteriorating, I have to summon up every ounce of determination to battle on. I spent the day trying to do a little sewing on my machine, but was not very successful. I'm no longer able to machine or cut fabric straight. I was pretty upset at my poor efforts and inability to do something that I used to love and excel at. One more thing is being taken away from me. How I wish they'd hurry up and find a cure for this rotten disease before it’s too late. I fantasise about just waking up one morning and magically discovering that during the night Parkinson's just disappeared - vanished into thin air! How I long to have the energy and ability to competently run my household taking care of my family as I once did, and go for long walks around the forest with our dog by my side. I want my life back; to turn the hands back on the clock as I try to cling on to some semblance of a normal life and yet like sand in my hand, I find it's slipping away between my fingers. With chronic illness, there are good days and bad days. Today is not a good day, but maybe tomorrow will be better!

Slowly all the things I liked and found fun,

Are being stolen away, one by one.

Hobbies and activities I used to enjoy,

Skills and abilities once able to employ.

Parkinson’s the thief, crept into my life,

Causing great chaos, havoc and strife.

Constant change, as the disease winds its way,

Through every facet of my life each day.

Remaining positive and cheerful I do my best,

As this horrendous malady puts me to the test.

Although today was bad, I’ll not let it win,

I’ll find my ‘happy gene’ that I hold within.

Written by Elaine Benton © 2012