Post Polio Syndrome Day – 22nd October 2014

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.

• Symptoms of Post Polio
• British Polio Foundation

Quilt Scribbles ~ Ten Favourite Books and Memories of Mum

Last week Sharn set a challenge via Facebook to list the ten books that have influenced our lives.

Mum was an avid reader. So I guess it was quite natural that she would encourage me to read and generally love the whole book experience.

I pondered 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.

In later life, when I was told off for grunting as I apparently did in response to questions that were asked when I was reading. I would always say, well you only have yourself to blame, Mum. She would always smile and similarly I would carry on grunting a response!

So, this list is going to reflect the ten books that are my favourites and whilst I miss Mum every day, I especially miss the random book discussions we would have. Including the frequent offer of a replace copy of my first listed book – sometimes the copy holds the memories too in addition to the story.

A Town Like Alice by Neville Shute – my aged copy purchased at a second hand bookstore 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”)

84 Charring Cross Road by Helene Hanff. I recall reading this book and once finished launched into a Helene Hanff readathon, devouring a books one after the other. Mum asked me what it was that appealed to 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!

Apple of My Eye by Helene Hanff. In 1976, Helene 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.

Animal Farm by George Orwell I was about 14 or so when I read this book. It was one of the set books in my senior school O-Level and I remember thinking what a ridiculous book 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.

More recently the book group I attend read this book. I re-read it again and was surprised to hear that I was the only one in the group who had read it previously. Several people didn’t understand the political tale it told. Whilst I view this as a classic, perhaps it is not so.

One Day in the Life of Ivan Denisovich. The gift that my English lit teacher gave me was to stretch my reading. I read this book the summer before I took my senior exams. This is the story of life in the Russian Gulags imposed on millions of Russians by Stalin, post Second World War. For me it was a realisation that I live in a democracy. No one will round me up and in prison me for a random reason. No one from the state will force me to work or live in a regime that has very little chance of escape. It made me realise that I was experienced freedom and choice.

A Room with a View by E. M. Forster. Another absolute classic and a book which I have read several time, (although not admittedly as often as a Town like Alice!) This tells 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.

The film of the book has some pretty well known actors and actresses – Dame Judy Dench, Dame Maggie Smith, Helene Bonham Carter and many others. I watched the film in according to my diary in 1987 and now am the proud owner of a blue ray to replace my exhausted video copy.

The Floating Brothel by Sian Rees This book is the story of a group of 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.

The Boy in the Stripped Pyjamas by John Boyne. I was recommend this book by a friend and read it within a few months of it’s release. 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.

And Ladies of the Club by Helen Hooven Santmyer. Set in the United States in the the time span of 1868 – 1913. It follows the townspeople of a 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.

What is History Teaching by Chris Husbands. A non fiction book that explores exactly what we learn from history and how we can 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.

There are my ten, the reality was the list of favourite books was at least triple that. Each book in their own way has influenced what I read, how I interpret what the author is sharing and Mum gave me the courage to say actually I don’t like, agree, understand, and most importantly to be my own person.

Quilt Scribbles ~ Benches, Plaques and Happy Memories

The last month or so has been very busy and exciting with family here from down under! During the course of their visit, I thought many times that I wished Mum was here. To share the laughter, enjoyment and to celebrate our 20th wedding anniversary.

I know that I have not mentioned before, but after the ceremony I had Mum’s ashes returned to me. As we have a house move on the cards, I wanted to ensure we were settled before parting deciding how to commemorate Mum’s life in a typical & visual fashion. I didn’t want Mum’s headstone to become something that no one visited. For me it was important that her life was commemorated somewhere, but as I considered and explored various options nothing felt right.

Guildford Castle ~ J Goucher July 2014

Then last week, we stopped at Guildford, on route to London. We spent some time wandering around the usual places and then a visit to the Castle.

I spent many afternoons with my Grandmother at the Castle. First stop was to the buttery outside the grounds where we would purchased an ice cream. We then moved into the Castle grounds and sat watching the lawn bowls.

Overlooking the Bowling Green ~ J Goucher July 2014

We had “our bench”, a pretty grim and non de-script bench. In fact it wasn’t really a bench. It was several slats of wood set between the garden walls.

I was disappointed to see as I walked around alone that “our bench” had gone and was replaced with a garden bench, which looked much nicer, bit yet, not the same.

I have such happy memories and somehow, for reasons completely unknown to me I felt that a plaque on a bench here to commemorate my Grandparents and Mum was the way to go.

Currently the town where I live is a few hundred miles away from Guildford, and going forward it will be many more miles than that, but a plaque and commemoration here feels absolutely the right thing. Of that I am sure.

 

Quilt Scribbles – Blue Moon Success!

Those of you who have been following this memorial project from the beginning will possibly remember that I said Mum had a Blue Moon rose. You can read that earlier post HERE.

Stuart and I have been watching rather keenly the last of Mum’s rose trees to bloom. The Blue Moon rose strangely has a pink tinge to the bud before turning into a lilac blue flower.

Yesterday with the 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.

I so wish Mum was here to see it.