About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, May 18, 2018

Are You on the Duodopa Pump?

I spent Tuesday in hospital being checked out by a Gastro Surgeon, as I’ve been in a lot of pain in the area where the hole and pipe are attached to the Duodopa pump. If you are on this treatment and are experiencing constant pains in your tummy and a little light bleeding, it would be great to hear from you. Sharing experiences with other patients is priceless.

Another week has flown by, and my back is much better than it was. Of late, my voice sounds gravelly and I often have to repeat myself several times till I’m heard. It’s as if someone has turned my volume down. I also have great difficulty in swallowing (particularly at night when I’ve been disconnected from the pump). I have sessions with a doctor who specializes in speech and swallowing difficulties, and I have various exercises that I do several times a day.

I would just like to say “Happy birthday” to my cousin. Have a great day and hope you have fun celebrating today.

There’s a cheesecake sitting in our fridge whispering my name. I love cheesecake but rarely have it, as I’m the only one in the house who likes it. Along with millions around the world, tomorrow our eyes will be glued to the television seeing the Royal Wedding. There is something about all the pomp and ceremony that captivates the world.

So whatever you are doing this weekend, whether celebrating your birthday, watching a Royal wedding, eating cheesecake or seeing the Cup Final between Chelsea and Manchester United“Come on you Blues!” (just in case you wondered which team we support), have an enjoyable time surrounded by those you love.

Friday, May 11, 2018

Thankful for small mercies

Thank goodness there has been a vast improvement from this time last week when I was suffering terrible pains from a herniated disk in my lower back. I was rendered immobile for several days, unable to stand, walk or sit down, my only option was to lay down in bed. I am now back on my feet, taking things nice and easy.

I’m afraid that’s all for this week. Have a good weekend everyone and I’ll catch up with you next Friday.

Friday, May 4, 2018

Just when you think things are improving!

How’s your week been? Hopefully better than mine! When suffering from Parkinson’s disease you learn to expect the unexpected, for life can throw a curveball and this latest episode is one I could have well done without. As if Gaucher disease and Parkinson isn’t enough to contend with, I’ve been in bed since Sunday with a herniated disk in my lower back causing terrible pain. Recommended to lay still, is almost impossible if you have Parkinson’s. I can’t stand, sit or walk at the moment, so writing my blog this week is taking a great deal of effort.

Fortunately, my husband is quite a dab hand in the kitchen, but there are times when “takeaway” is the quickest and easiest solution for the evening meal.

What did we do before there was “takeaway”? When I was young, growing up in England, the only “takeaway” was the quintessential fish and chips. Traditionally, fish and chips were wrapped in yesterday’s newspaper for insulation and to absorb the grease, with an inner layer of white paper for hygiene. Sadly, fish and chips are no longer served in newspaper due to “health & safety” regulations. The cod, haddock, plaice or hake was deep fried in a golden delicious batter, served with thick unevenly cut chips topped off with a good shake of vinegar and salt.

Recently, a fish and chip shop opened nearby, where they fry fish to order so everything is fresh, and a tasty tartar sauce which they make themselves, but no yesterday’s newspaper in sight. In my present condition, I think you can guess what we’re having for dinner tonight!

Friday, April 27, 2018

There’s always something new to learn.

I had a pretty rough time last week, which prevented me from writing my blog.
The cold winter weather, in particular the rainy season has a huge effect on my bones, especially the joints. The pains are made worse by Parkinson’s dyskinesia and dystonia which constantly shake my delicate painful bones. In these circumstances, I rely on morphine tablets, relieving the pain so it becomes bearable.

Constipation is a very common problem when suffering from Parkinson’s disease and I was told when Duodopa is administered by a pump, it is important not to be constipated otherwise the medication won’t work properly. What I did not realise was that having diarrhea is just as bad, for the Duodopa is literally flushed straight out of the system.

This past week has been yet another learning curve, discovering this information the hard way, it was as if the Duodopa had just stopped working and I was thrown into a permanent “off” state. I have been on the Duodopa pump for six months now, but clearly there are things I still don’t know.

I wish you all a relaxing good weekend, but most of all, good health.

Friday, April 13, 2018

The Pros & Cons of Duodopa

Like everything in life, there are good things versus bad, pros and cons and as many a Parkinson’s patient will tell you, there are “on” and “off” times that get annoyingly worse as the disease progresses.

For example, one of Duodopa pluses, is being able to eat at whatever time I want. I no longer have countless alarms going off on my mobile phone, reminding me to take my pills, and waiting approximately 45 minutes between taking a Dopicar tablet and eating (in particular protein such as meat, chicken or cheese). All my family and friends were very understanding and accommodated my rigid eating times which allowed me to get the optimum result from the daily regime of Parkinson’s medications.

It’s one thing to control meal times in one’s own house, but quite another when you have been invited to someone’s home or are eating at a restaurant. It would be the height of rudeness to hurry one’s host with serving on time, and often in the past I have had to forgo eating as I was more concerned that my pills were given the best possible chance of working. It can even get difficult in a restaurant or cafe, and if the service is slow, I can miss the window of opportunity to eat a healthy meal containing protein.

I am often teased in our family about how my stomach can tell the time. Perhaps I swallowed a clock when I was young?! But I doubt this very much, and think the explanation is more to do with DNA, as my brothers and a cousin of mine, all have this internal clock and need to eat at regular times.

Duodopa is not a pill, and therefore administered in a completely different manner, bypassing the stomach altogether.

Friday, April 6, 2018

A Family Wedding

Naturally we’ve been looking at the photos and watching the video of the wedding again and again. I don’t think I’ll ever tire of looking at them and re-living the most wonderful and special event of our lives. I expect every parent feels this way.

It’s a bit like when you are pregnant for the first time. Well-meaning people try and explain that your life will never be the same again, and although you listen attentively and nod your head in agreement, thinking “of course things will be different” only when that little bundle of joy arrives, with no instruction manual, do we finally understand the enormity of what people have been trying in vain to impart.

There are certain events in life that must be experienced personally, and no amount of preparation will suffice. Divorce, loss and ill health being the major ones that first come to mind. If anyone thinks they can imagine what it’s like to live with two chronic diseases, then think again. Unless standing in my shoes, you can’t possibly comprehend how every facet of my life, and that of my darling husband has been changed beyond all recognition. 

The pump and the Duodopa medication is most certainly not a cure, and is not trouble free, but it’s a life changer and arriving at the 11th hour, was not a moment too soon, has literally bought me time and unquestionably improved my quality of life. 

However, Parkinson’s is merciless and devout in its cruelty, quietly and patiently waiting in the wings, for just the right moment when it will attempt to reclaim center stage. So, until that time, I shall endeavour to live my life as always, making the most out of every day, and embracing fully, all that I hold dear.

Friday, March 30, 2018

Duodopa Pump

After my three nights spent in hospital, I was thrilled to be considered a good candidate for “Duodopa” - a Parkinson’s treatment that I had only recently become aware of. During my short hospital stay, the trial run proved how a patient can benefit, substantially improving one’s quality of life.

Three weeks later, I returned to the hospital and had a permanent “Peg line” surgically inserted. The Hospital were very good, and the surgeon told us the operation went well and considered minor surgery, I was allowed home the same day.

The following day, needless to say I felt pretty rough, but this was to be expected.  A nurse came to our house to show my husband how to change the dressing and explained how to look after the Peg Line.

So, I am now sporting a “Peg Line” which is attached to a pump, who has become my new best friend! It never leaves my side, and we go everywhere together. I was given several different vests, pouches and bags so that I have a variety of options. It does restrict one’s clothing a little. Although the pump weighs only half a kilo, you’d be surprised how heavy it becomes when you’ve been wearing it since 05:00 and only at 22:00 when I go to bed at night, am I detached from the pump.

I hope the manufacturers are working on a lighter weight pump. There is an amount of maintenance involved with flushing through the tubes at night before detaching one ‘self from the pump. Once a week, instead of using regular tap water, believe it or not, we were advised using regular Coco cola to flush through the tubes.

The pump runs on two regular AA batteries, so we had to get a stock of these in, as the batteries last exactly one week. Also 20 ml syringes are required for flushing the tubes. 
Whilst in hospital for the three nights, my husband was taught how to use the pump, and once at home I became comfortable with working it. Although I have to admit, at 05:00, I am not able to manage by myself.

Without the Duodopa and its pump, I seriously doubt I would have made it to my daughter’s wedding. Duodopa enabled me to walk down the aisle with my husband and daughter, who was a vision of beauty in an elegant long white bridal gown. The smiles of pure joy on the newlywed’s faces was simply precious as they danced the night away. My handsome husband dressed in his new suit, was smiling from ear to ear the entire evening.