A lot of time has passed since I last posted. I've been to Indonesia for nearly 2 months, writing and enjoying the incredible softness and warm-heartedness of Bali. I met so many wonderful and significant people there, people who had experienced death and loss in many different forms, and who were willing to share their stories with me. As a result my project is undergoing a gentle but steady evolution. Like a river, it's now braiding into separate strands, that may fuse together again at some point....
One stream that I want to follow is to create a space for people to discuss and share their losses and griefs - a death cafe, if you like. It seems to me we have so little opportunity to do that, and one of the striking things about Bali was the ease with which people talk about, celebrate and incorporate others into the experience of death. In Balinese Hinduism, the belief in reincarnation is absolutely core, but whatever we think about what happens after death I feel we could benefit from having more about death and loss in our lives!
My hope is to create an exhibition, drawing on my mum's work and my own, that creates and holds a space for people to share their experiences, reflections and creative work about living and dying. I would hope to include my mum's beautiful ceramics, alongside my writings and some other pieces I want to create. The idea is embryonic, and there is a lot to prepare and think about, but I will keep you updated. Likely date is May/June 2015 in Bristol.
In parallel, I'd like to pursue some writing that helps to share the developments in research and clinical practice for MND. Having just attended the Motor Neurone Disease Association Annual Symposium in Brussels (Bali to Brussels - big shock!) I was inspired by the enormous energy and dedication of people working on MND. I'll post something on the session that struck me most - on end of life decisions - before Christmas, but I would really like to help give voice to all of the activity and ideas that are emerging in the field. I've just sent off the first emails requesting interviews from some of the people I met at the meeting, my voice having dried up to a harsh squeak at the meeting itself! First up will be Dr Martin Turner from Oxford, an incredible thinker, researcher and clinician that I first met in January 2014 and saw again in Brussels.
I'll try to post more often, and to get some other writing online! New Years' Resolutions abound.
With love and warmest wishes for a creative and peaceful New Year,
Pip
Wednesday 17 December 2014
Friday 19 September 2014
Insights from Ayurveda?
In my last post I was asking about how we could get insight into whether there is a ‘type’ of person that is more likely to suffer from MND. I wondered whether there might be insights from traditional forms of medicine, such as Ayurveda, that type people according to physical and mental attributes and use that typing to understand the origin of and treat their disease.
I should make it clear here that I’m not asking for, or expecting, any insights into treating MND with Ayurveda. As far as I know, by the time MND manifests and somebody has symptoms, there are currently no treatments – from any medical tradition – that can reverse the disease’s devastating trend.
But back to the idea of types. Ayurveda is a several thousand year-old medical tradition that takes a very holistic perspective – humans are not ‘linear beings’ and their spiritual and physical evolution is happening at the same time. To get some first insights into Ayurveda beyond what I could find on the web I spoke to a friend of mine, who used to work in the Western medical system (in cancer care) but is now a yoga teacher and training as an Ayurvedic practioner in New Mexico. She studies with Vasant Lad, who was one of the first people to bring Ayurveda to the West.
She introduced me to the idea of Ayurvedic doshas – which I had previously only encountered on products in the Body Shop – which are shorthand for a combination of qualities that tend to cluster together. There are three dosha types – Vata, Kapha and Pitta – each with different attributes, and the dosha constitution ('prakriti' in Sanskrit)you have when you are born will generally be with you for life. Most people will have a dominant dosha (either Vata, Kapha or Pitta), many will be di-doshic (two doshas of equal strength, and the third of lesser strength) and there are a very few people who are tri-doshic (with all doshas having equal strength). Everybody has all doshas present in their bodies, it’s just the relative amount of each that differs. It will also be generally consistent through all of your body systems – skin, digestion, circulation etc – although the exception (of course!) is the mind (or heart-brain as it is known in Ayurveda), which can have a different dosha profile to the rest of your body.
MND is described on sites promoting Ayurvedic treatment as associated with Vata imbalance. According to Vasant Lad’s description, Vata is the ‘subtle energy associated with movement — composed of space and air, and governs breathing, blinking, muscle and tissue movement, pulsation of the heart, and all movements in the cytoplasm and cell membranes. In balance, vata promotes creativity and flexibility. Out of balance, vata produces fear and anxiety’. I asked my friend if MND being attributed to a Vata imbalance means it only shows up in ‘Vata-type’ people, but a vata disease can develop in any dosha type. And Vata imbalance is also cited as the origin of Parkinson’s and other neurological disorders. Furthermore, it could be the other doshas acting to ‘push’ Vata out of balance. It’s just a question of where (i.e. in which part of which system) the imbalance will show up.
This led us to discuss the idea of a ‘weak link’ – something that everyone has and is an easy entry point for disease (khavaigunya). This could stem from childhood illness or injury, or something inherited – either genetically or behaviourally. I know this meant something to my mum. When she was about 30, an Indian taxi driver – who claimed intuitive powers - told her that her weakness was in her nervous system. She took him very seriously at the time but didn’t think much about what he said until she was diagnosed with ALS. Is there any way he could have seen a ‘weak link’ in her nervous system from the short time he was with her? It’s impossible to say.
As usual, I feel full of questions. My scientific mind would like to interrogate the Ayurvedic approach further. It feels frustrating to me that if there is a medical system that has brought insights to many millions of people over thousands of years that it’s not part of mainstream thinking in the West. I wonder what the distribution is of people across dosha types, and whether there are an infinite number of different dosha combinations that all occur with equal frequency. In my geeky moments I wonder what it would look like if you could measure all of the different dosha compositions and plot them on a three-dimensional graph. And I wonder what it would reveal if we could analyse and record dosha compositions at the beginning of life and then follow that cohort of people through to see what diseases they go on to develop. Would it be random, or would we see associations of particular diseases with particular dosha profiles? I’m sure it’s the latter, but it’s hard to know. But this would be one of the few ways I can think of to test the explanatory, and predictive, power of Ayurveda. So what would it take to get that kind of approach included in some of our largest cohort studies, like the Children of the 90's study in Bristol?
But if any disease can occur in any dosha type, then in the case of MND it might not be possible, or helpful, to associate the illness with any particular dosha composition. I imagine any Ayurvedic practitioner would say that they work more with the person in front of them, and less with abstract concepts. But it would be interesting to talk to Ayurvedic doctors who have seen a number of patients with MND and to hear what they think.
I wonder whether the complexities of the Ayurvedic approach might be telling us what the Western medical approach tells us too - it’s complicated. There are lots of different potential ways and reasons someone might develop MND. And it’s likely going to be a different story for everyone.
Wednesday 3 September 2014
The MND 'type'?
A question that has piqued my curiosity for some time is whether we can say anything about the 'type' of people who get MND. 'Type' could include elements of people's personality, but it could be any traits that are more likely to be associated with people that have MND than those who don't develop the disease. Given that about 90% of cases of MND seem to arise spontaneously in the population (that is there is no family history of the disease), then it would be extremely helpful for early diagnosis and possibly intervention if we knew which people would be most likely to go on and develop MND.
Of course, this would never be an exact science, and we have to be cautious about looking for easy patterns. If learning about MND teaches us anything it is that there are likely a huge variety of reasons why someone develops this disease. Those could be any combination of genetic background, developmental, environmental, or lifestyle factors, and likely the interaction of all of them over time. We can't afford to narrow our view to exclude people that don't conform to a stereotype, but equally, a rigorous understanding of type might give us some predictive power, an insight into the mechanism of the disease, or a better grasp of which treatments might bring benefit.
So if there is a 'type' of person that is more likely to develop MND, what kinds of ways could we approach learning about that?
We have the epidemiological data: 1-2 people in every 100,000 will develop MND in any year, and the average age of onset is 57 years. Slightly more men than women develop ALS, but the proportions even out in older patients. There seem to be some populations where MND occurs more frequently than we would expect, and one well-known example is in top division Italian football players. But building up a more insightful picture is really difficult because MND is rare, and so requires big populations to be confident that any increased incidence is not just due to chance, or because of some specific but unusual reason.
This information feels frustratingly crude.
More recently, we are starting to build up a picture of the kinds of things people with MND are exposed to in their lives. In one US study, MND was more frequently associated with people who had exposures to fertilisers and pesticides, and this has been found - although not consistently - in other studies as well. Questionnaire-based methods have shown that MND sufferers have higher levels of work and leisure physical activity, and Dutch researchers recently found that increased leisure time physical activity was correlated with an increased risk of MND. The hypothesis is not that the physical activity causes MND, but that the type of people that favour physical activity are also the people that are more likely to go on and develop the illness.
These are some tantalising clues.
We have the experiences of people who work closely with MND sufferers. Physicians see hundreds of patients with MND, and some will speculate - with due caveats - about the traits they feel they see more often. The archetype is someone slim who has led an active life - a 'go-er and do-er', and had little illness to date. I was really struck by a paragraph that echoes this in the excellent and moving memoir - Rowing Without Oars - by Ulla-Carin Lindquist:
But it seems to me we need to go much deeper. We know people come in different shapes and sizes, with different personalities and dispositions. What we don't understand is how those features relate to illness and wellbeing. I wonder if there are traditions, other than the Western medical tradition, that are more comfortable with 'typing' people. I'm thinking of systems such as Ayurveda and Traditional Chinese Medicine. It might seem a bit far-fetched, but I'm going to investigate. I'll let you know what I find out!
Of course, this would never be an exact science, and we have to be cautious about looking for easy patterns. If learning about MND teaches us anything it is that there are likely a huge variety of reasons why someone develops this disease. Those could be any combination of genetic background, developmental, environmental, or lifestyle factors, and likely the interaction of all of them over time. We can't afford to narrow our view to exclude people that don't conform to a stereotype, but equally, a rigorous understanding of type might give us some predictive power, an insight into the mechanism of the disease, or a better grasp of which treatments might bring benefit.
So if there is a 'type' of person that is more likely to develop MND, what kinds of ways could we approach learning about that?
We have the epidemiological data: 1-2 people in every 100,000 will develop MND in any year, and the average age of onset is 57 years. Slightly more men than women develop ALS, but the proportions even out in older patients. There seem to be some populations where MND occurs more frequently than we would expect, and one well-known example is in top division Italian football players. But building up a more insightful picture is really difficult because MND is rare, and so requires big populations to be confident that any increased incidence is not just due to chance, or because of some specific but unusual reason.
This information feels frustratingly crude.
More recently, we are starting to build up a picture of the kinds of things people with MND are exposed to in their lives. In one US study, MND was more frequently associated with people who had exposures to fertilisers and pesticides, and this has been found - although not consistently - in other studies as well. Questionnaire-based methods have shown that MND sufferers have higher levels of work and leisure physical activity, and Dutch researchers recently found that increased leisure time physical activity was correlated with an increased risk of MND. The hypothesis is not that the physical activity causes MND, but that the type of people that favour physical activity are also the people that are more likely to go on and develop the illness.
These are some tantalising clues.
We have the experiences of people who work closely with MND sufferers. Physicians see hundreds of patients with MND, and some will speculate - with due caveats - about the traits they feel they see more often. The archetype is someone slim who has led an active life - a 'go-er and do-er', and had little illness to date. I was really struck by a paragraph that echoes this in the excellent and moving memoir - Rowing Without Oars - by Ulla-Carin Lindquist:
"Who is your typical patient?" I ask Nurse Margaretha.I recognise all of those features in my mum. Which is not to say it's true - this is the MND type - but it is interesting.
Her reply comes straightway: "Well-educated, highly intelligent, with great integrity. Seldom overweight or careless with themselves. Often sporty. Eighty per cent of my patients are what one usually calls type-A individuals. They are high achievers with integrity who make huge demands on themselves."
But it seems to me we need to go much deeper. We know people come in different shapes and sizes, with different personalities and dispositions. What we don't understand is how those features relate to illness and wellbeing. I wonder if there are traditions, other than the Western medical tradition, that are more comfortable with 'typing' people. I'm thinking of systems such as Ayurveda and Traditional Chinese Medicine. It might seem a bit far-fetched, but I'm going to investigate. I'll let you know what I find out!
Sunday 31 August 2014
Ice bucket challenge
Not many people will have escaped the global craze that is the Ice Bucket Challenge. I'm not even sure how it started - I think with celebrities in the US - but it is doing an incredible, if fleeting, job of raising awareness of ALS/MND and raising money for associated charities.
I know quite a lot of people are skeptical about the value of the challenge. And I can understand why. It's all too easy to get on board with the latest viral craze - especially when it has a link to a charitable cause - and then pat ourselves on the back that we have 'done something'. But I think there is real value in this frenzied chucking of ice cold water over our heads:
- It raises awareness of the disease, or even just the name Motor Neurone Disease (which is barely known and often confused with MS or other neurodegenerative disorders)
- It propagates, and by nominating others we have the opportunity to share and pass on each other's stories. I've been touched by the number of people that have mentioned my mum in their challenge.
- It raises money that is vitally needed and well used (currently more than £4M in the UK). Whether it's funding research, or helping people to get the aids they need to live with MND, the UK MNDA does fantastic work. And they are overwhelmed by this lump of funding that has suddenly come their way. The craze will soon be over, but the ripples of what that money can do will be long-lasting.
And if you haven't seen enough of these - here's mine - http://vimeo.com/104762706
Tuesday 22 July 2014
Cells on the edge - Part 1 (of many?)
I'm wanting to try out what it's like to write about the science of MND. There are so many ideas that interest me but it feels difficult to absorb and distil what has already been written, while also adding something of my own... Here goes with an intro to why motor neurones have it tough.
"If you're not living on the edge, you're taking up too much space...."
Whoever said that - maybe a branding agency - might have been talking about evolution rather than extreme sports. Across the board, natural selection hones biological systems to perform as well as possible in a given context, often with little extra slack. What I'd like to start to explore in this post (it's a big topic, and it's going to be a bit clunky!) is whether the forces of evolution drive motor neurones to the limits of their capability, and whether this therefore makes them particularly easy to push 'over the edge', as happens in Motor Neurone Disease (MND).
As the name suggests, motor neurones are the primary cells that fail in MND. The 'lower motor neurones' are huge cells with their bodies in the spinal cord, and with their long axons (the cables that carry the nerve impulses) travelling out to the muscles all over the body. A millivolt nerve impulse propagates its way down the axon, and when it reaches the end - the terminal - it causes a squirt of chemical onto the muscle and causes the muscle fibre to contract. This exquisitely organised hybrid of electrical and chemical signalling is played out in the synapse, with every motor neurone making hundreds or thousands of synapses onto each of our many millions of muscle fibres. And every time a neurone fires it has to be reset immediately afterwards, ready for the next nerve impulse.
Firing a few nerve impulses now and again doesn't sound too stressful for a cell, but in fact the energetic demands of this process are huge. Neurones are constantly working to maintain a different balance of chemical ions inside the cell than outside (giving rise to a charge, or potential difference across the cell), without which they would not be able to fire the millivolt electrical pulses that encode their signals to the muscles. Added to that, the chemical that the motor neurone releases onto the muscle - acetylcholine - has to be manufactured, released and recaptured, many thousands of times over a day. Motor neurones - like all other neurones - have their own inbuilt energy generation mechanism in the form of mitochondria, and in motor neurones these are found both in the cell body and in the terminals, providing the power needed to keep the synapses going.
Not only are the energetic demands of neurones huge - the brain uses an estimated 20% of all of the energy in the body - but motor neurones seem to have it particularly tough. They are huge, complex cells, and they fire almost constantly. Neither of those factors makes for an easy life.
A sense of scale might help here. The longest motor neurones start in the base of the spinal cord, and reach their axons to the tip of the big toe. If that motor neurone cell body was the size of a cricket ball (10 cm in diameter), the cable running to the furthest muscle in the body would be 1km long! 1 km long, but only 1 cm wide. That sounds like a very vulnerable route for all of the essential supplies - including the energy generation machinery - that have to travel from one end of the cell to the other.
So why might having a high energy demand - as we'd expect for a large, complex cell that fires all the time - be problematic? Well, as anyone who has a toddler knows, lots of energy causes lots of mess. The energy generation process creates toxic byproducts that have to be cleaned up, constantly. If they are not the cell will suffer damage, and over time that damage can accumulate and kill the cell.
What we understand so far about MND (see here for a good synopsis of what goes wrong in motor neurones) is that something often goes wrong with energy generation and housekeeping in the motor neurone. This may be a cause or a consequence of the illness - we don't know - but diseased motor neurones show a variety of different signs that all is not well. They may have clumps of defective proteins, evidence of damage by 'free radicals', or other signs of stress. In other words, something is pushing them to the brink of what is survivable. And sometimes that will be too much.
I can see there's a lot more to explore here....! In the next post about cells on the edge, I'll explore some of the questions that take us beyond the fundamental biology of the system. If motor neurones are so close to the edge, then why wouldn't everyone get MND? Or maybe everyone would if they lived long enough. Are motor neurones more vulnerable than other cells? And why might a system be 'designed to fail'?
If this has piqued your interest, you might want to read more about motor neurones in general, or specifically about alpha motor neurones (the ones that innervate our muscle fibres). Please share other resources you think are good!
"If you're not living on the edge, you're taking up too much space...."
Whoever said that - maybe a branding agency - might have been talking about evolution rather than extreme sports. Across the board, natural selection hones biological systems to perform as well as possible in a given context, often with little extra slack. What I'd like to start to explore in this post (it's a big topic, and it's going to be a bit clunky!) is whether the forces of evolution drive motor neurones to the limits of their capability, and whether this therefore makes them particularly easy to push 'over the edge', as happens in Motor Neurone Disease (MND).
As the name suggests, motor neurones are the primary cells that fail in MND. The 'lower motor neurones' are huge cells with their bodies in the spinal cord, and with their long axons (the cables that carry the nerve impulses) travelling out to the muscles all over the body. A millivolt nerve impulse propagates its way down the axon, and when it reaches the end - the terminal - it causes a squirt of chemical onto the muscle and causes the muscle fibre to contract. This exquisitely organised hybrid of electrical and chemical signalling is played out in the synapse, with every motor neurone making hundreds or thousands of synapses onto each of our many millions of muscle fibres. And every time a neurone fires it has to be reset immediately afterwards, ready for the next nerve impulse.
Firing a few nerve impulses now and again doesn't sound too stressful for a cell, but in fact the energetic demands of this process are huge. Neurones are constantly working to maintain a different balance of chemical ions inside the cell than outside (giving rise to a charge, or potential difference across the cell), without which they would not be able to fire the millivolt electrical pulses that encode their signals to the muscles. Added to that, the chemical that the motor neurone releases onto the muscle - acetylcholine - has to be manufactured, released and recaptured, many thousands of times over a day. Motor neurones - like all other neurones - have their own inbuilt energy generation mechanism in the form of mitochondria, and in motor neurones these are found both in the cell body and in the terminals, providing the power needed to keep the synapses going.
Not only are the energetic demands of neurones huge - the brain uses an estimated 20% of all of the energy in the body - but motor neurones seem to have it particularly tough. They are huge, complex cells, and they fire almost constantly. Neither of those factors makes for an easy life.
A sense of scale might help here. The longest motor neurones start in the base of the spinal cord, and reach their axons to the tip of the big toe. If that motor neurone cell body was the size of a cricket ball (10 cm in diameter), the cable running to the furthest muscle in the body would be 1km long! 1 km long, but only 1 cm wide. That sounds like a very vulnerable route for all of the essential supplies - including the energy generation machinery - that have to travel from one end of the cell to the other.
So why might having a high energy demand - as we'd expect for a large, complex cell that fires all the time - be problematic? Well, as anyone who has a toddler knows, lots of energy causes lots of mess. The energy generation process creates toxic byproducts that have to be cleaned up, constantly. If they are not the cell will suffer damage, and over time that damage can accumulate and kill the cell.
What we understand so far about MND (see here for a good synopsis of what goes wrong in motor neurones) is that something often goes wrong with energy generation and housekeeping in the motor neurone. This may be a cause or a consequence of the illness - we don't know - but diseased motor neurones show a variety of different signs that all is not well. They may have clumps of defective proteins, evidence of damage by 'free radicals', or other signs of stress. In other words, something is pushing them to the brink of what is survivable. And sometimes that will be too much.
I can see there's a lot more to explore here....! In the next post about cells on the edge, I'll explore some of the questions that take us beyond the fundamental biology of the system. If motor neurones are so close to the edge, then why wouldn't everyone get MND? Or maybe everyone would if they lived long enough. Are motor neurones more vulnerable than other cells? And why might a system be 'designed to fail'?
If this has piqued your interest, you might want to read more about motor neurones in general, or specifically about alpha motor neurones (the ones that innervate our muscle fibres). Please share other resources you think are good!
Monday 21 July 2014
Learning from others
I've been finding it hard to get to writing - all too easily distracted (the 'part time' job expanding to fill more space than I am willing to give it), poor time management, and perhaps the slightest edge of fear all stopping me from throwing myself headlong into this project.
So this evening I thought that if I couldn't write, at least I would read - The Long Goodbye by Meghan O'Rourke - a recommendation from my friend Nicole. I've devoured half of it in almost a single sitting, between my garden and my sofa. There's a wonderful review of it here on Brainpickings.
It's a memoir by a woman a little younger than me, who lost her mum from cancer at the age of 55. O'Rourke was so attentive and present through her mum's illness, death, and the aftermath. And I recognise so many things she describes beautifully in her vivid, honest and raw prose. It's almost her throwaway comments that catch me the most - "Time doesn’t obey our commands. You cannot make it holy just because it is disappearing."
I remember being struck by that as my mum came to the end of her life. There were still the banal things to do, and in a sense it was the banal that held the world together. Washing, dressing, walking in the garden, making and eating food, sleeping. All of these things have to be done, or were things that she could and wanted to do. Every day. Until her very last day.
But she also had a way of making all time holy. Such that eating a slice of hard-boiled egg on our patio, in the sunshine, just a few days before she died, had a reverence and a joy that I might never know. She could be transported into raptures by a beautiful moment, and would just close her eyes and smile. She wrote:
So this evening I thought that if I couldn't write, at least I would read - The Long Goodbye by Meghan O'Rourke - a recommendation from my friend Nicole. I've devoured half of it in almost a single sitting, between my garden and my sofa. There's a wonderful review of it here on Brainpickings.
It's a memoir by a woman a little younger than me, who lost her mum from cancer at the age of 55. O'Rourke was so attentive and present through her mum's illness, death, and the aftermath. And I recognise so many things she describes beautifully in her vivid, honest and raw prose. It's almost her throwaway comments that catch me the most - "Time doesn’t obey our commands. You cannot make it holy just because it is disappearing."
I remember being struck by that as my mum came to the end of her life. There were still the banal things to do, and in a sense it was the banal that held the world together. Washing, dressing, walking in the garden, making and eating food, sleeping. All of these things have to be done, or were things that she could and wanted to do. Every day. Until her very last day.
But she also had a way of making all time holy. Such that eating a slice of hard-boiled egg on our patio, in the sunshine, just a few days before she died, had a reverence and a joy that I might never know. She could be transported into raptures by a beautiful moment, and would just close her eyes and smile. She wrote:
Yes,life is uncertain and life is fragile.To be reverent of it is to show gratitude for this precious gift of life.
Wednesday 25 June 2014
Starting out
My mum - Sabine - passed away from Motor Neurone Disease almost exactly 9 months ago. These are her hands, holding a sand dollar that we found on the beach in Oregon, as we marvelled at the neurone-like patterns.
In the time since her death I have been incubating how to respond to this event - the loss of a superbly creative, open-minded, curious and inspiring person...and a lynch pin of my life. All I knew is that I wanted to mark her death - I couldn't keep going exactly as before - and do something that would be my own tribute to her.
Ideas started coming to me when I was on a short retreat over the New Year. The first thing was clear - stop working so hard! I put the wheels in motion to take a year's break from my job. Secondly - investigate! I started meeting people involved with MND research and the organisations that support sufferers and carers. Thirdly - open up my thinking channels! I am lucky in not only having experienced my mum's incredibly accepting and curious approach to her illness, but also in having studied MND in the early stages of my neuroscience PhD. There is so much information about MND emerging now, but I for one find it a bit overwhelming. And at the same time I can't help but feel that doctors and scientists only have part of the story. Maybe a bit of time and a different perspective could help reveal new ways of thinking about this illness, integrating the views and ideas of many different people with their different experiences of bodies and minds, health and illness.
So my hope is that there is something interesting for me to explore at the interface of the scientific and the personal - how we know and understand this illness medically and scientifically, but also how we know it personally, in our bones. I also hope you'd like to join in on this journey, contributing thoughts, questions, ideas and provocations. If we find it's an interesting conversation then maybe we can write something together!
The sorts of questions I am interested in asking include: Why do healthy people get MND? Where does the system go wrong and when? Is it one illness or many? Are there particular types of people that get MND? How might we understand those 'types', aside from a Western medical perspective? Can we imagine MND as something other than an illness? Could it be a consequence of a system that exists 'on the edge'? How do different people cope and respond to it? Can it ever be a positive thing? And how can we help people with MND at the end of their lives? How can loved ones and professionals bring more understanding into their interactions with people with MND? How can we live with it as part of our nature, maybe as part of our neuronal nature?
I hope and expect that these questions will shift and change over the coming months. I'll try to keep blogging as they do. And I hope they might spill into forms other than writing, like art, photography, and poetry. My mum set the bar high by writing beautiful poetry towards the end of her life. If I can, I'd like to find a way to share some of that too.
To start my investigations I'll be reading, interviewing, talking to people, and thinking. As well as keeping myself sane and healthy through doing things I love! I'd relish your input on what I should be reading (current love is Atul Gawande), who I should talk to, and other ways I might approach the project. Please leave your comments on the post.
Thanks for reading!
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