Losing Grace by Robyn Langton

“A grandmother is a little bit parent, a little bit teacher, and a little bit best friend.”

Who remembers that mad feeling of excitement when you were told as a child that you were going to stay with Granny and Papa? As a child growing up, I was very fortunate to have wonderful grandparents around me to support my parents, provide me with unconditional love – and lots of sweeties on the sly. Along the way, as is life, I have lost all of my beloved grandparents, my Granny Grace being the last, saying goodbye at the age of 77. Some people are not lucky enough to know their grandparents, however more and more are able to enjoy them for longer as demography changes and people are living longer. My Granny was incredibly independent, never relying on health or social care apart from the odd trip to her GP and was still going swimming twice a week and ‘raking around’ in her 70’s. Grace was one of life’s treasures, incredibly sweet and kind to everyone around her.

In summer 2010, my Granny began to change and not quite seem herself. Living just up the road from us, she regularly popped in to visit (and secretly do some of my chores Mum had left me) and I distinctly remember one day when she left, she lost her balance on the steps and I watched as she slowly made her way back up the street. Another incident happened when she fell backwards over into the bath (thankfully empty!). These incidents seemed to be happening more and more often and Grace consulted her GP several times; without any diagnosis or medication being prescribed.

It got to the point that my Granny’s loss of vision and mobility was so severe that it made it unsafe for her to be at home. When the family took her up to the hospital to get checked over, Grace was almost blind and needed to use walking sticks. My Granny was admitted to the ward in September. Lying in her hospital bed she was no longer the chatty woman that went out of her way to help everyone else, she was in desperate need of support herself to get changed, move around, go to the toilet, and she had to be fed. A very fit and healthy lady had suddenly turned into a frail, dependent ‘patient’ at DGRI in Dumfries and Galloway. It was terrifying watching the person we knew and loved so much slip away so quickly – we were losing our Grace along the way. Eventually we were told that Grace had developed a neurological condition and they thought this could be something called Creutzfeldt-Jakob disease (CJD) but couldn’t be sure. A specialist team from the National CJD Unit in Edinburgh came down to undertake tests, and confirmed that my Granny had sporadic CJD.  My Granny died less than 4 months after first displaying the symptoms, in November 2010.

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CJD is a rare neurodegenerative condition that affects tissues in the brain, nerves and spinal cord. Despite being the most common form of CJD, sporadic CJD is still very rare, causing 1-2 deaths per million worldwide every year. I always said my Granny was always one in a million.

Symptoms of CJD include:

  • loss of intellect and memory
  • change in personality
  • loss of balance and co-ordination
  • slurred speech
  • visual disturbance and blindness
  • abnormal jerking movements
  • progressive loss of brain function and mobility

It was a difficult and distressing time for the family, as is any serious illness. However, this was made more difficult in the agonising time it took for her diagnosis, and the lack of knowledge around how to manage this condition due to it being so uncommon. This was also not helped by the stigma attached to this disease.

There are various strands of CJD. CJD is caused by an abnormal protein, called prion, which contaminates the nervous system. Variant CJD may have been passed to humans through beef products infected with bovine spongiform encephalopathy (BSE). However, there are four different types of CJD and infection is not always the cause of this condition. For example, the cause of sporadic CJD, which accounts for 85% of all CJD cases (and the type my Granny had) still remains unknown.

The world is an amazing and fascinating place, however it can also be filled with lots of unknowns, and some scary illnesses. We need to make more of the unknowns known; and support the fantastic work of all our world researchers out there spending their days doing exactly this.

Last year, the Brain Research Trust funded two PhD studentships researching CJD and related prion diseases. I want to raise as much awareness of this disease as possible. We had no idea for months what was wrong with Granny, her symptoms began with loss of balance and forgetfulness which quickly turned into a nightmare. Whilst there is no cure for the disease just now I am hoping more research will help come up with some solutions or ways of identifying earlier so people and their families are more supported and informed and can have an agreed care plan in place.

Five years after my Granny died, I decided in November 2015 that I was ready to start talking about the disease and raise awareness amongst health professionals and the general public. Having only ever run as far as 5K, I decided to take the plunge and sign up for the Dumfries Half Marathon. I have been training for the past few months in preparation for the run on Sunday 25th September to run 13.1 miles. It has been a bit of a bumpy ride, with several trips to Physiotherapy, Podiatry and Sports Therapy, however I figure if Grace could swim 50 lengths of Dumfries swimming pool twice a week at 75 years old, this run will be a doddle.

Any support would be greatly appreciated. Thank you.

Click here for more info http://www.brt.org.uk/creutzfeldt-jakob-disease-cjd


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Robyn Langton is an Integration Support Officer for NHS Dumfries and Galloway