By Jo Collinge
This blog was first published following the World Parkinson’s Congress held in Glasgow, September 2010…………. It was then republished about a year later, with a lengthy addition tagged on to the end about challenging my specialist on his views about DBS. This is – more or less – the original version.
Two weeks prior to [originally] writing this my elder daughter sat exams to win a Bursary at a well known independent girls’ school. She was one of a handful of girls chosen to sit these (well, two handfuls to be precise ….). A fantastic achievement as she was selected from a number who had applied. Having taken the approach that she was going to “get by” on her natural ability, of which she has plenty, she took the decision not to do any prep work. My husband and I tried, but failed, to get her to “knuckle down”. Elise’s approach to such matters is that she works hard at school, therefore why should she work hard at home. Being reluctant to make a big fuss over the issue, we took the path of least resistance and didn’t force the issue. [On top of that, I had also spent the summer holidays recovering from a hysterectomy, following which I suffered a serious haemorrhage which was resolved by another operation plus blood transfusion. I weighed 8st at the time and totally lacked any energy…..]
The day of the exams came and went, there was a lot of pressure on my first born with 3 papers and two interviews, and afterwards I treated her to Hot Fudge Cake with Ice Cream, washed down with Lemonade at a local tea room. We both waddled out afterwards feeling rather fat. My purse had lost a few pounds whilst I, on the other hand, had gained a few! Whilst waiting for my daughter to come out from her interview with the Deputy Head and the Chairman of the Governors, I sat and reflected on 11 years ago, when she was only 5 weeks old. At that time, she had been taken critically ill with suspected septicaemia, but on admittance to Salisbury hospital was diagnosed with an irregular heartbeat, in excess of 250 beats per minute (Supra Ventricular Tachycardia or SVT). She was placed on a drug, which 6 months later my husband and I insisted she be taken off, as our beautiful baby daughter was screaming 24/7 and was covered from head to toe in infected eczema. On top of that, she was under-weight and not developing as she should have been. Our insistence paid off – it transpired that she had a severe allergic reaction to one of the additives in the drug that she was on. 11 years later, our daughter is, in our eyes, a wonderful child who is intelligent and very creative. We were definitely not complacent at the time in questioning the Paediatrician over whether our daughter should be on the drug concerned. Or rather my husband wasn’t – I was suffering from severe sleep deprivation at the time! (In later discussions I definitely wasn’t complacent, when said Paediatrician was keen to place my daughter on a regime of beta-blockers. I stood my ground and refused, he backed down – eventually.)
Going back to the exams to win the Bursary, we received the results in the post a little over a week later. Elise had been offered a place, but not the Bursary. Unless we can find the funds from another source, she cannot go. It goes without saying that we (my husband, me, and my daughter) were all disappointed. But the most disappointed was Elise, as she had decided on the day, at the eleventh hour, that she really wanted to win the coveted place. That was the price of our complacency and a bitter pill to swallow.
But there is another Price of Complacency, and that is the price of being complacent about Parkinson’s. It is up to us, as People with Parkinson’s, to make sure that we are not only heard, but to find the wherewithal to enable research to find a cure, or at the very least a way of halting the progress of Parkinson’s to be found. For those of you who were there at the opening ceremony of the World Parkinson’s Congress in Glasgow, you will recall that Bryn Williams’ speech was nothing short of inspirational. Bryn’s speech was a classic Call to Arms in the war being waged against a hidden enemy, the enemy being Parkinson’s. Quite rightly he had a standing ovation – he well and truly deserved it. Bryn is definitely not being complacent. And like Bryn, each one of us shouldn’t be complacent – each one of us can make a difference to the future of Parkinson’s and in winning that war.
That difference can be just by quietly getting on with living our lives, ensuring we eat the right food that doesn’t conflict with our drugs regime, and that we exercise like fury to keep the effects of Parkinson’s at bay. The difference can be by ensuring that our Healthcare team delivers the right treatment at the right time, and to not be afraid to challenge when something doesn’t feel quite right. Eleven years ago, my husband and I were not afraid to challenge the Paediatrician looking after our daughter, and we are both jolly glad we made that challenge. That is the Price of Complacency.
Having had that experience, I am not afraid to challenge my Neurologist, my Parkinson’s Nurse or my GP if I think my treatment is not right. Also I am not afraid to say to strangers I have Parkinson’s, when they look at me in a strange way as I go all wibbly-wobbly and flustered when I’m out of my precious comfort zone. (Packing and paying for shopping, even a single item, is a classic example!) The reactions I have had range from the incredulous (“you’re so young”) to the ”so what” reaction. Most people I have come across are ignorant or misinformed about Parkinson’s, a few are well informed and some even want to do what they can to help. And as for the “so what’s” – well they just don’t care.
In spite of the “so what’s” of this world, we can make a difference by taking up the beat of that drum, in our own individual way, the drum that Bryn is banging in his call to arms. By doing so we can collectively and individually, raise awareness, raise money to fund research, or both. It is by doing our bit that we can rise up, make ourselves heard, put our stake in the sand and chivvy along those scientists and pharmaceutical companies to find a solution to the problem that is Parkinson’s. It is by doing our bit that we can make ourselves heard by the Politicians and Health Service providers to ensure that the right care is delivered at the right time, on time, every time. It is by doing our bit that we can raise public awareness and educate those who know little or nothing about Parkinson’s and its devastating effects.
The Price of Complacency with respect to Parkinson’s is living without question with the degenerative effects of Parkinson’s for the rest of your days. The Price of Complacency is not making your voice heard, not raising awareness, not raising funds. It is up to you whether you want to pay that price.
I, personally speaking, don’t intend paying the Price of Complacency when it comes to Parkinson’s. I, for one, would like to enjoy the years ahead of me as my children grow up, watch them go to University and make their way in the world. I certainly do not want to end up with my children taking on the role of caring for me. I definitely intend remaining independent and enjoying my dotage with my husband by my side for as long as I can!
As far as my first born is concerned, her god-mother has convinced me that Elise will do well no matter which secondary school she goes to. That said, as her parents and therefore responsible for Elise’s education, my husband and I are of the opinion that the school she ends up at has to be the right school – we are definitely not being complacent.
- More by Jo Collinge
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