The power of her grip surprised me, as she lay motionless on her bed. Motor Neuron disease (ALS) had left her unable to speak, or move her hands to write her thoughts or command the machine that she had used occasionally to robotically speak on her behalf.
My mother died on my 29th birthday, some soon to be ten years ago. Many people have said how difficult it must be for me that my birthday was the day she died. Actually of all the days in a year it was strangely a gift. If it had been the day before or after I would be sad on the lead up or thinking about the next day on my birthday. This way I have no option but to have a good time and celebrate her life on the anniversary of the day she gave me mine.
I didn’t realise when she grasped my hand so tight that she knew it was the last time we would physically touch. Later that day when she took her last breaths I was having lunch with a group of my closest friends. We then went on to a pub named the Hope and drank champagne to toast her life. Whilst totally devastating, for me this was the probably the best of scenario’s in which I could have begun to cope with such an event.
When I first heard the news that my Mum was ill my first thought was I hoped she didn’t have MS like her mother had. If only it had been. Now after a period of neurological illness myself (caused by nerve damage and inflammation), which at its worst left me unable to look after my children and my now remarkable change in health after the removal of gluten from my diet I am keen to find answers. Answers so that maybe I can prevent further generations of neurological disease in my family and most importantly safe guard my daughters future.
The neurologist I was referred to didn’t undertake any celiac or gluten sensitive related blood tests. I am not prepared to risk re-introducing gluten in to my diet so the standard blood tests are not an option for me. I have been referred to see Prof Marios Hadjivassiliou, a Professor of Neurology whose ground breaking research identified that gluten sensitivity can manifest purely as neurological disease. See this article; Gluten Sensitivity as a Neurological Illness, published in the Journal of Neurology, Neurosurgery and Psychiatry
Last year Dr. Hadjivassiliou and Professor Dave Sanders, also of the Sheffield Teaching Hospitals NHS Foundation Trust, established the groundbreaking Sheffield Institute of Gluten-Related Disorders (SIGReD), the world’s first clinic to specialize in the neurological manifestations of gluten-related disorders. Which is where I have been referred but as I live in a different part of the UK I have to wait for my referral to be approved by an NHS panel in the county I live in.
I have also requested to be referred to my local genetics service for screening. I am still waiting to hear back regarding this referral by my local GP.
UP DATE: The referral panel declined my referral. Another GP at the same practise advised he would of directly referred me without the need to go to the panel. I am now working with him to find out what tests are available without re-introducing gluten in to my diet on the NHS. It is very important to me that I pursue this through the NHS as I want to show (or make it so) its accessible to everyone as already I could pay and go privately to see Dr. Hadjivassiliou who in turn has advised he could only test me if I re-introduce gluten. This contradicts other information I have read. So my research and endeavour continues. If you have any information regarding testing please let me know. Feb 2014.
The success of these referrals is still unknown but I am very determined that even if the local NHS panel initially deny my referral or the local genetics team are unable to help that I will find a way for these tests to happen and the answers to be found.
Nearly ten years later I am struck by the fact that only now I realise that in that final strong, determined grip she spoke a life time of words and that she would never leave me. And sometimes I hear her voice, in my own when talking to my children. I am blessed.
Sometimes when you can’t have a hug with someone in person, I find chocolate the next best thing.
- 250 grams or 9oz, of good chocolate (min 70% coco coca solids, and gluten-free)
- 50g unsalted butter (1/2 stick)
- 100 grams or 1 cup chopped walnuts
- 100 grams or 1 cup dried cranberries
- 2 tablespoons of maple syrup
- 280 ml of 1 cup, double cream
- 1 teaspoon vanilla extract
- Fresh raspberries or your fruit of choice to top
- Peeled white chocolate to top
- Put a large pan of water on to boil and then add the chocolate and butter to a bowl on top of the pan to melt. When melted add the maple syrup, chopped walnuts and cranberries.
- Whisk the cream and vanilla extract until thick and fold in to the cooled chocolate.
- Place in to 4 x glasses or pots of similar size as shown in the picture or 6 smaller pots. Place in the fridge until wanted and top with fruit and chocolate peelings of your choice and enjoy!
Notes: These pots can be enjoyed straight away or will keep well in a fridge for up to one day.