Today is PPS Day. PPS stands for Post Polio Syndrome. The reality is that by the time a diagnosis was made for Mum it was really the beginning of a slippery slope, which we navigated without really knowing the path we were taking.
Looking back now I can of course see where we and the medical professionals went wrong and it is of course very easy to make a judgement when you know the facts. Hindsight is a wonderful thing.
The bottom line is that most people have never heard of PPS and in some cases that includes medical staff. Professionals today, in their early thirties will not necessarily have the understanding that something that is now controlled was at one time not, and there is a generation of folk living with PPS. There must be a greater understanding of the effects of Polio and Post Polio Syndrome by health professionals.
Mum was first unwell in the late 1990’s. Investigations were done and things simply pointed to getting older and the usual ailments that start presenting themselves. That Mum accepted at face value. As time went on and the various symptoms got worse, the outpatient visits grew. Eventually it was suggested that Mum take early retirement. Her age prevented her from taking her provision from her private pension and once we had jumped through the various loop holes there was a medical to be undertaken.
The Polio Virus courtesy of The British Polio Foundation
There the medical expert said that he was not going to support Mum’s claim to her own entitlement and presented her with the appeals process. By the time the appeal date came round I had read, researched, lived and breathed Post Polio Syndrome. We headed back to a second medical and the Doctor was delightful. She had not only heard of Post Polio Syndrome, but said somewhat quietly and with a degree of sadness that things were not going to improve. They would only get worse.
Mum eventually stabilised and for the next five or six years we toddled along being supportive to a fiercely independent and stubborn woman; a family trait that I am very proud of ! Over time though things did start to deteriorate. The referrals to specialists increased and many of the symptoms exhibited were put down to manifestations due to age or conditions that our family history pre deposed us to. Meanwhile, in the background, Post Polio Syndrome was upping its game.
What was a case of worsening asthma, uncontrolled chest infections was in fact not, or at least not entirely. It was the steady decreasing ability for Mum’s heart to cope. She was referred to the hospital. Sadly, cancellations and waiting lists prevailed and by the time Mum was due to see the consultant she was already in hospital. At the point she was admitted her heart was pumping at 10% capacity. I won’t go into the details further, because there is a degree of questionable behaviour from professionals who looked after Mum during her last two and a half months.
What is vital is that we have a degree of education that trains health professionals to look and dig deeper when presented with a patient that had polio decades earlier. There must also be a process of education and awareness for those that had polio and their families. To understand what happens as Post Polio starts its process, to be confident enough to challenge the medical professionals when what is suggested does not feel right. To know when to look at assistance aids, enabling energy invested in something that can be achieved rather than on what can not.
We still have polio in some parts of the world and at some point in the future there will be others experiencing Post Polio Syndrome, which is something that could have been avoided.
In the meantime, we must support organisations such as the British Polio Foundation and others around the globe. Whilst in the western world Polio is mostly irradiated, Post Polio will never be unless we stop Polio.
ed on my ten books. Was this ten going to reflect my childhood reading? Enid Blyton books – tales of Noddy and Big Ears written in the days before political correctness went wild. I still have those early Noddy books, with price tickets and shop names of yesteryear. I recall days of wonder of Nancy Drew, The famous Five. Happy memories of visits to the library and being allowed to choose a book every week or so.
okstore in Guildford, which closed its doors about five years ago. A tragic loss to Guildford. My copy is falling to pieces, the tape that keeps the loose pages from being lost all brown and brittle. In fact, it was reading this book on at a railway platform early one morning that made me board a train leaving my luggage on the platform. I didn’t even realise it was missing until I went to put away my tatty copy of the book. (my luggage gone, visions of potential disasters of my under garments being destroyed by the security services. Who know, I never got the luggage back, but I do have my beloved copy of “Alice”)
o me and I really didn’t know. Mum tried reading this book and it wasn’t for her, which kind of saddened me a bit, but such is life!
Hanff was tasked with writing a book on New York. She lived in Manhattan, and as she cast her mind back and thought of the places tourists visit she realised that she had never been to any of them. She enlisted her friend Patsy to accompany her on her travels. The book is not a travel book. It is the view of a City from the view of a resident. She discusses the controversy over the building of the World Trade Centre. I read the book after 2001.
ook about animals talking. Later that week, my history O-Level class embarked on the complexities of Russia at the time of the Bolsheviks uprising. Between them, two teachers, Miss Russell and Mr Tanner threaded together the life in Russia at the time, and how that had cleverly been encapsulated by George Orwell when he wrote this book.
the story of a young girl entrusted to her aged cousin for her grand tour of Italy before she settles down to marry. Once in Italy the pair settle into the life at the hotel they are staying for the summer . There they meet a group of interesting individuals, who form the subject for the book.
women sentenced to transportation to Australia on board the Lady Juliana. There crimes, typically considered petty and undertaken more out of necessity of life or death. It shows desperate times result often in desperate measures.
It is set just outside of the Concentration camp, Auschwitz. It is the story of a little boy, whose father is in the German army during the Second World War, The little boy builds a friendship with the little boy in the stripped pyjamas who lives the other side of the fence. Neither little boy can understand the situation of their lives. It is simply different. One day the little boy in the pyjamas expresses to his friend that he can not find his Dad. The offer of help is given and the little boy crosses the fence to help his new friend. The consequences are dire.
community in Ohio. We read the transformation of the people of the town , there thoughts, feelings and development. in a historical period when women were treated as possessions and men mocked the interests of their wives. A huge book, with a huge story line.
encourage and explain to others the value it has within today’s Society. It does this by exploring history through four different methods. Explore history using evidence, explore history using language of the past, explore through story and through imagination.
warm summer sun finally encouraging the bloom to do its stuff we now have the lovely shade of lilac blue adding to the abundance of colour in the garden.
The In Memory of......Quilt 