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.

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.

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.