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Living with long term conditions like myelopathy

 BY Dr Amalia Gasson
​   
Amalia has been working in adult mental health in the NHS for eight years, currently working in a community mental health rehabilitation team.  She is experienced in working therapeutically with clients with a wide range of difficulties, with a focus on anxiety, depression, relationship difficulties and serious mental health difficulties. She also has an interest in chronic pain and physical health conditions and has completed research into chronic fatigue syndrome. 

Life is stressful. Every day there are lots of events that will fill up our “stress buckets” to varying levels…the computer stops working, we drop a cup, there’s a queue in the shop.
If we have had a bad night’s sleep our stress bucket is already part full before we get out of bed.
Living with long term health conditions means we may have buckets almost overflowing to start the day with and then one “small” stress makes that bucket overflow and everything feels impossible to cope with.

Finding ways to manage our stress levels reduces those times of feeling overwhelmed. It can also have a positive impact on our physical health. There are many very good online resources with tips and techniques that you may find helpful.

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Dr Amalia Gasson: Clinical Psychologist

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Managing energy levels
With any health condition, there is a significant impact on our energy levels. Generally, we tend to go through life doing the most we can in the shortest time. Then our health can stop us in our tracks.
Learning to manage our energy so it feels less of a rollercoaster and more predictable can be tricky. This site has a whole range of self help resources. This link is specifically to the cycles we get into which can make managing energy difficult, and ways to make changes:

https://www.getselfhelp.co.uk/chronicfp.htm

Spoon Theory is another approach to managing energy
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/


Pain

Managing pain levels, like fatigue, links to the ideas of pacing and spoon theory. There are also specific resources about pain such as:
http://www.moodjuice.scot.nhs.uk/ChronicPain.asp

The pain toolkit is created by someone who experiences chronic pain. There are videos on this site and also a pdf download: https://www.paintoolkit.org/tools

The British Pain Society also has helpful information: https://www.britishpainsociety.org/

Mindfulness
It feels like you can’t go anywhere nowadays without hearing someone talking about mindfulness. This is an approach developed from eastern Buddhist meditation techniques and applied to pain management. It was found to be so helpful it has spread throughout healthcare as a way of managing stress.
At its core is a very simple idea, which is surprisingly difficult to put into practice: “Be in the present moment.”

Most of the time we are caught up in thoughts or regrets about the past, or worries about the future, and rarely notice the present. 

​Have you ever driven somewhere, arriving without remembering the journey? Have you ever been reading a book without taking it in? Looking at your watch without actually seeing the time? These are all examples of being “mindless” which is the opposite of being mindful. 

There are some good links about mindfulness here, and several downloads and resources to listen to:
https://www.mindful.org/what-is-mindfulness/
https://www.getselfhelp.co.uk/mindfulness.htm

There are many mindfulness books available. In my work I tend to use Mindfulness for Dummies, by Shamash Alidina, as it is so practical.

One very simple mindfulness practice is to go through all your senses, focusing on each one in turn. By doing this you are totally absorbing yourself in the present, even if only very briefly. 

I’m also a fan of the mindful eating idea, often done with a raisin but this one uses chocolate
https://www.jmu.edu/counselingctr/files/Mindful%20eating.pdf 

A great article from Brain & Life (American academy of neurology) on meditation called Inner peace.
Brain & Life 

We now have our very own INSIGHT TIMER group  for Cervical Myelopathy you can join by entering your details in the form belowCervical Myelopathy you can join by entering your details in the form below


Do you want to join our very own insight timer meditation group? if so please fill in your details below

Compassion
How kind are you to yourself?
When you are having a tough day, do you congratulate yourself on what you manage despite that, or do you have a go at yourself for struggling?

As humans we are generally pretty rubbish at being kind to ourselves. An approach called compassion focused therapy is based on how the human brain evolved and explains why we are so tough on ourselves. 

Paul Gilbert, who developed this approach, believes in sharing all the resources and information:
https://compassionatemind.co.uk/

A summary of compassion focused therapy ideas can be found at :
https://www.getselfhelp.co.uk/compassion.htm
There are some nice worksheets on becoming aware of your levels of criticism and compassion practices under therapist resources at: https://www.actwithcompassion.com/therapist_resources

The centre for clinical interventions is an Australian site with excellent self help workbooks for a whole range of issues including building compassion, managing panic, dealing with distress and overcoming perfectionism (a character trait many of us have but which makes pacing energy nigh on impossible so definitely worth a quick look): http://www.cci.health.wa.gov.au/resources/consumers.cfm
Most have simple questions in the first module to help you assess whether this is a specific area that might be helpful for you to explore further.

Finally, the great thing about the internet is just how many resources there are.
You may have come across many that you could share on a forum like this to help others. 

There are also great Apps like Headspace which talk you through mindfulness exercises.
This is a list of Apps recommended by the NHS: https://www.getselfhelp.co.uk/links2.htm

Here is a list here of mindfulness apps:
 https://www.healthline.com/health/mental-health/top-meditation-iphone-android-apps

If you feel you want further support for your mental health and ways of managing stress, a good first point of contact is your GP who can refer on to primary care therapy. 
There are many parts of the UK where you can also refer yourself – the NHS website has a service finder:

https://www.nhs.uk/Service-Search/Psychological-therapies-(IAPT)/LocationSearch/10008

Mind often offer free courses and support: https://www.mind.org.uk/
The Samaritans have useful information on their site https://www.samaritans.org/, have the phone number 116123 and you can email jo@samaritans.org (they aim to respond to email within 24 hours).

In crisis 
If you feel you are in crisis with your mental health and you are
having – suicidal thoughts and feelings; or thoughts about harming yourself or someone else; or you have seriously hurt yourself…
You can go to any hospital A&E department and ask for help (if you need to, call  999  and ask for an ambulance). There are specialist mental health liaison teams in hospitals who will see you quickly and be able to offer the most appropriate support

Hydrotherapy brings green shoots of recovery to exercise desert.

PictureDelphine Houlton

By Delphine Houlton

On completion of my first ACDF, the surgeon immediately informed my anxious husband that I would never ride a bike again.
That was in 2007 and, to be fair, I have not taken to the saddle since.  After initial improvements, unfortunately many Degenerative Cervical Myelopathy (DCM) symptoms returned. Fusion had not taken place and the discs had slipped slightly.
On discharge from my second ACDF in 2008, with discs caged and this time a soft collar for six weeks, I was told not to put any strain on my neck at all. I still had balance/walking problems and numbness alongside other symptoms.
Neither my GP nor my neurologist ever contradicted the “no strain on the neck” message. Although I did learn that if I had MS I would have been immediately offered physiotherapy and hydrotherapy.

So, I dutifully did not put strain on my neck for more than eight years – my symptoms worsened as I gained weight, and felt rubbish, in an exercise desert.

​After all, logically, the gym was out of the question – I would have fallen over if I had gone on the treadmill thanks to the balance problems. Even in the shopping centre my legs seized up after a three-minute slow and painful walk. Furthermore, my favourites in a previous life, rowing machines and swimming certainly put strain on the neck, as did all weight-training equipment. 

Giving up work and becoming more housebound, in total frustration, I found a private physiotherapist and explained the problems. She was knowledgeable and caring. I worked hard to strengthen my core muscles, improve my balance and more. However, progress was slow and, to be honest, the exercises boring in the longer term. However, she had opened a window of possibility.



I asked my GP directly for a referral for hydrotherapy and she agreed. 
Six months later I was standing chest-deep in warm water – stretching, balancing, walking forwards, sideways and backwards, bending my knees, practising going up and down a step in the pool, sitting on a chair and cycling with my legs and relaxing every muscle as I floated. Movements I had struggled with, or avoided on land for years, were all possible.
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Hydrotherapy


The goal, I was told, was to revive muscle memory. Taking advantage of the ease of movement in the warm water, I was reminding all my muscles how they should be working in a whole range of manoeuvres I found impossible out of the water.

My initial six sessions gave me the confidence, and the ability, to tackle so much more out of the water too. 
Additional sessions have built up my strength and confidence even further. 
I can now tackle many tasks in the garden, go for a short walk on uneven ground in the countryside, and walk up and down stairs without too much discomfort or fear of falling. I can even bend enough to put on boots, socks and tights again! 

Of course, there are still not-so-good days when I need to think harder about where all my limbs are and how to move them. However, the confidence I have regained through hydrotherapy keeps me going and keen to take on more physical challenges at every possible opportunity. 

Unsurprisingly, my mood too has greatly improved – I see a much brighter future ahead rather than the gloom and frustration of a continuing decline in physical abilities and increasingly limited lifestyle.
The transformation hydrotherapy has brought to my exercise desert is clearly anecdotal evidence. Proper research is needed into the benefits of hydrotherapy for people with DCM. 
If hydrotherapy can be shown to improve outcomes, and relieve low mood associated with limited lifestyles, then we must push for the option of hydrotherapy to be incorporated into all DCM post-operative treatment programmes. It also possibly has the potential to help relieve pre-operative problems too.


    Have you used hydrotherapy?
    If so we would like to hear about your experience?

Should you have physiotherapy after surgery?

by A Badran

At present, surgery is the mainstay of treatment for myelopathy.  Whilst it is able to stop further injury to the spinal cord by relieving impingement, the limited capacity for the spinal cord to repair leads to only partial recovery.  Therefore strategies to improve recovery after surgery are a major unmet need in myelopathy. 

This has generated much interest in postoperative therapies to maximise postoperative recovery, including the development of neural repair medicines.  Unfortunately, whilst showing early promise, these are not yet ready for every-day use. 

Physiotherapy on the hand, is routinely employed for many related health conditions, and is considered to significantly contribute to recovery after conditions such as Stroke and Spinal Cord Injury. 

Our ambition therefore was to look at the medical literature to see if there was any suggestion it could be of benefit to patients with myelopathy. 

How did we go about this?

We performed something called a systematic review and this has recently been published in the journal of Clinical Rehabilitation. (1)  This is a research technique which rigorously screens databases of medical literatures.  Typically this is done in three stages:  Firstly, a search strategy (string of relevant words) is put together.  This is then applied to medical literature databases and the results of the search are manually screened, initially by their title and summaries.  Any articles considered potentially relevant and then read in full to evaluate their relevance to the research question.  

What did we find?

​We found only one study commenting on the effects of physiotherapy after surgery for DCM. This is a small retrospective study of 21 patients with DCM that underwent surgery and then rehabilitation. However it was a poor quality study, and spontaneous recovery after surgery could not be distinguished from the effects of physiotherapy specifically. Although the study concluded that rehabilitation improved functional status, the small study size and its design make this conclusions very tentative.

Therefore, unfortunately, we identified that the effect of postoperative physiotherapy in DCM has been poorly studied and we could not make any recommendations about whether it should be routinely provided. This does not mean that physiotherapy is harmful or should not be provided after surgery for degenerative cervical myelopathy but simply more investigation is required.  

Pleasingly there are now two registered randomised controlled trials, one in Taiwan and another in Canada, which will hopefully shed light on the effects of postoperative rehabilitation in DCM.

References

Can we detect myelopathy before symptoms develop?

By J.Hamilton. 

Why is ASCC relevant to Degenerative Cervical Myelopathy?
Asymptomatic spinal cord compression (ASCC) is very common; studies of healthy volunteers has identified between 8 and 59 in every 100 patients who underwent a cervical MRI had it! [1]  These are the same compression features seen in DCM, however less that 1 in a hundred patients from these studies had any symptoms of myelopathy….   Hence the term ASCC (as opposed to DCM, which is defined by the symptoms of the condition, such as pain and weakness).

However, we know from other studies that some people with ASCC go onto develop DCM over time and this has led to the suggestion that ASCC actually represents the earliest stages of DCM.  In order to further evaluate this, researchers from North America have been using new MRI imaging techniques to better understand asymptomatic cord compression and to see whether the compression is affecting the spinal cord. 

What was the aim of the study?
The study, undertaken at the University of Toronto had two primary aims:

1)Can ASCC be automatically diagnosed by using computer analysis of MRI images?
2)Can damage to the spinal cord be visualised using new MRI techniques in ASCC? 

How did they measure subclinical damage and cord compression?
The group recruited 40 individuals to the study, 20 of which has ASCC and 20 had no evidence of cord compression.

Aim Number 1
The performance of a computer programme to diagnose cord compression was compared to a group of experts and found to be just as good.  

Aim Number 2:
The group then compared people with and without ASCC using a number of new techniques to look at the structure within the spinal cord, these include the following
The researchers found that some of these new imaging techniques were able to detect changes within the ASCC group that are also seen in DCM; specifically, FA, MTR and T2*WI WM/GM.  When compared to uncompressed individuals, a combined score looking at a combination of parameters was very accurate at spotting tissue injury. This indicated that there is a degree of tissue damage before symptoms in ASCC, and that this perhaps represents the early stage of degeneration that progresses into degenerative cervical myelopathy. 

What to make of this?
This study is informative to clinicians, as it reflects a way to diagnose ASCC early on before significant damage has been done to induce symptoms.  The success of the computer diagnosis also means ‘expertise’ can be transferred into any hospital setting.  This is exciting, as we know that if we could detect DCM earlier, and offer treatment sooner, patients would make a better recovery.  

The finding that ASCC causes tissue damage also may make us question our definition of myelopathy. Currently, symptoms are the definitive characteristic of myelopathy, but as advances in technology allow us to detect spinal cord damage in the absence of symptoms, this may change. The symptoms of myelopathy may reflect a later stage of damage that occurs after what we can now see using MRI. 
Furthermore, the findings of similar tissue injury in ASCC to DCM indicated a possible definitive link between the two disease states. The researchers compare the two as being similar to “pre-diabetes” and “diabetes” (a scenario where people who are struggling to handle their blood sugars are identified even earlier, with some able to make changes to prevent the onset of diabetes). Perhaps what we are seeing here is a “pre-DCM” state.  This still requires more work to be confirmed.  We look forward to following the research story further! 

Myelopathy needs you!

Share your experience of CSM and Pain Here

Many patients with CSM report pain, but this experience and its impact is unknown. So can you please take a few minutes and help us with this survey,This survey aims to find out more about pain in CSM to support much needed research in this area. 
References
1.
Prevalence and Imaging Characteristics of Non-Myelopathic and Myelopathic Spondylotic Cervical Cord Compression. (2016). Prevalence and Imaging Characteristics of Non-Myelopathic and Myelopathic Spondylotic Cervical Cord Compression. http://doi.org/10.1097/BRS.0000000000001842
2.
Can microstructural MRI detect subclinical tissue injury in subjects with asymptomatic cervical spinal cord compression? A prospective cohort study. (2018). Can microstructural MRI detect subclinical tissue injury in subjects with asymptomatic cervical spinal cord compression? A prospective cohort study., 8(4), e019809. http://doi.org/10.1136/bmjopen-2017-019809

Community Champion Frank Dutton shares his top fundraising tips

As a Myelopathy.org Community Champion, I had the honour of holding the charity’s first fundraiser at my local football club.

PictureCommunity Champion Frank Dutton

Myelopathy.org and Myelopathy Support on Facebook have been a great help for both me and my wife since my diagnosis in 2016. Since then, life has been difficult to say the least. Cervical myelopathy, and the accidents it has caused, have led to me going under the knife for no less than six major surgeries. These have significantly affected my body and its ability to cope with everyday life.

I created a ‘lucky numbers’ board featuring 1-100. I then made a list of those numbers with spaces next to them for people to write down their names and telephone numbers. It cost £1 per number and I decided on a winning pay-out of £25 which, if all the numbers had been taken, would deliver a tidy profit of £75 for Myelopathy.org. 

I set my table up in the club room. I took along some laminated photos of people’s CT scans, including my own, as visual aids. I also made copies of one of the charity’s media releases about the condition and the need for early diagnosis, and the basic facts about myelopathy. These are part of the Myelopathy.org fundraising pack. 

It was very interesting to see how people reacted to the photographs and then responded to the information in the leaflets and that I was able to supply about myelopathy. 

The fundraising experience was a positive one and the fact that I was able to raise £71.10 (no idea where the 10p came from) was a bonus. I am now really looking forward to taking part in the next fundraising event. So, if you have any ideas or want to hold a fundraiser yourself, please let me or one of the Myelopathy.org team know.

My top five tips for fundraising.
1) Plan where you want to hold your fundraiser and contact relevant authority/fête organiser/owner etc for permission

2) Share, share, share. Use social media, such as Facebook, WhatsApp, Instagram etc, to gain maximum promotion and coverage for your fundraising activity.

3) Make it personal. Tell your own story so that people can understand more about your experiences and your reasons for fundraising. Sometimes that personal touch/story can elicit donations.

4) Remember your inspiration. There’s a reason why you are supporting this cause. Hold on to your inspiration and bring all that enthusiasm to your fundraising activities.

5) Have fun. If you are not enjoying yourself, you will give off all the wrong vibes. So, smile and perhaps rope in a friend or two to help so that you can jolly each other along.


    If you would like to organise your own fundraising even then please leave your details below

More to Myelopathy than meets the eye

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By O.Mowforth
Edited by B.Davies

We don’t really know what symptoms a “typical” patient with myelopathy has. 
In fact, the huge number of often quite subtle and non-specific symptoms is probably one of the main reasons why early diagnosis is so challenging (Davies et al., 2018).
 
When medical students prepare for exams they tend to learn stereotypical descriptions of conditions. For myelopathy, this might be a patient with walking problems and clumsy hands.

However, increasingly symptoms that one might never consider could be linked with myelopathy are emerging from the shadows.

Depressed or anxious mood is one such symptom (Stoffman et al., 2005). 
In recent years we have realised that myelopathy patients suffer from high levels of depressed or anxious mood and that this often improves after spinal surgery. But we have had little understanding of why this is the case.

A recent study from Japan has provided a little more insight (Sawada et al., 2018). The Japanese team studied the activity levels of various sites in the brain in myelopathy patients before and after surgery. They also studied individuals without myelopathy as a control group for comparison.
To do this, the team asked participants to do a simple finger-tapping exercise whilst they observed activity levels in the brain using functional magnetic resonance imaging.

The team found that before surgery individuals in the myelopathy group had a significantly higher activation in an area of the brain called the supplementary motor area compared to individuals in the group without myelopathy.
Next the team found that activation of brain areas, including the anterior cingulate cortex, the supplementary motor area and the thalamus significantly correlated with depression. This meant that the greater a patient’s depression, the greater the activation they had in these brain areas.  
Finally, the team found that both depression and activity in the anterior cingulate cortex and supplementary motor area decreased following surgery for myelopathy. 
Interesting!

The team argue that up to now surgeons have focussed on the “typical” symptoms such as the clumsy hands and walking problems when deciding whether to operate. They believe that their work may lead to future surgical decisions taking more account of the psychological symptoms too!

Davies, B.M., Mowforth, O.D., Smith, E.K., and Kotter, M.R. (2018). Degenerative cervical myelopathy. BMJ 360, k186.
Sawada, M., Nakae, T., Munemitsu, T., and Hojo, M. (2018). Cortical Reorganizations for Recovery from Depressive State After Spinal Decompression Surgery. World Neurosurg. 112, e632–e639.
Stoffman, M.R., Roberts, M.S., and King, J.T. (2005). Cervical spondylotic myelopathy, depression, and anxiety: a cohort analysis of 89 patients. Neurosurgery 57, 307–313; discussion 307-313.


Neck Muscles and CSM/DCM

By Timothy Boerger
Reviewed by B.Davies

Neck Muscles and CSM– An Update Part 1 of 2

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​This will be the first of a 2 part mini-series on the properties of muscles in the neck and how they impacts outcomes of surgery. We previously looked at this following an early piece of research from North America.  This series will serve as an update on this research. 


Why was this study conducted?

As outlined previously, the amount of fat found within muscles has been linked to the type of symptoms experienced by patients; including the amount of neck pain and walking ability. This new study was done on a separate cohort of patients than the previous study and included measures of neck strength and other quality of life scales not assessed previously which addresses some weaknesses of the previous study.

How was the study conducted?
This study used MRI imaging to measure the size and the amount of fat in muscles in the neck. Neck strength was measured by clinicians using a hand held force sensor. Several questionnaires were performed to assess function, pain, and quality of life. Importantly, this study used what is called a “cross-sectional’ design meaning it only looks at 1 time point. 

What was discovered?
Larger muscles and larger amounts of lean muscle (i.e. muscle without fat) in the neck were associated with increased strength. (We already knew this in general, but it is good to ensure there isn’t something different about patients with cervical myelopathy). More fat in muscles of the neck was associated with more disability measured by the mJOA. Importantly, neither strength, muscle size, or muscle fat were associated with pain, duration of symptoms, neck disability index, or quality of life in this study.

Why is this important?
Between the previous study linked above and this study, it appears that muscle fat may be a biomarker of disability and function in patients with myelopathy.  Currently there are no biomarkers for myelopathy, which makes it difficult to assess how severe it is or give an idea of how things will develop.  More research will be needed to investigate the usefulness of muscle fat as a biomarker, but given that it can be quantified based on existing widely avaliable imaging techniques, it could enter routine clinical practice quickly.
 

Why could muscle fat relate to the severity of myelopathy?
One reason this is being investigated is that fat infiltrates muscle as a response to nerve injury and disuse. For example, if a nerve is injured the nerve doesn’t tell the muscle to contract as much and it allows more fat to become deposited within the muscle itself. 
    

References

  1. Fortin M et al. Relationship Between Cervical Muscle Morphology Evaluated By MRI, Cervical Muscle Strength And Functional Outcomes In Patients With

Degenerative Cervical Myelopathy. Musculoskeletal Science and Practice. 38; epub 2018: 1-7 

  1. Fortin M, et al. Association Between Paraspinal Muscle Morphology, Clinical Symptoms and Functional Status in Patients With Degenerative Cervical Myelopathy. Spine (PhilaPa 1976). 2016 May 23

My Island

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BY Alison Murphy  MY…Hell…opathy Laughing & living with Cervical Myelopathy

Yesterday, my husband dropped me off at the swimming baths.  The large float around my waist and my cycling style of swimming does raise a smile or two. Some call me a ninja turtle, some the barnacle woman.  Today my predicament was in the changing room.  With my combination lock.  I tried it, retried it, again and again to no avail.  It wasn’t the wrong combination; it’s my date of birth but the lock is old and sometimes you have to press it together for it to open.  I could see my issue was attracting the attention of others. So in my swimming costume, dripping, I went to reception.  A female employee, with bolt cutters came to my rescue.  She struggled a little until suddenly the lock exploded apart.I opened the locker.  Opps.  Someone else’s clothes.  I used the ‘f’ word; it was called for.The leisure centre girl was laughing. The audience of women changing was lapping it up.  I said this has probably happened to other people.  No, she said.  What an idiot.

​My locker was only three doors away and I didn’t even think to try it.  I was resolutely sure that the locker was mine.  I felt so sorry for whoever’s locker it was.  They came to the leisure centre to work out and relax.  I had to lock their locker with my lock.  I left an apologetic note on their door telling them the combination was at reception.  Then I went for a cappuccino.  With myelopathy you have to let these things wash over you.

​I’ve been a little Norman Bates lately; stable one day, struggling with my myelopathy persona the next but I’m quite proud of myself.  I’ve reached out to people to try to reconnect and everyone’s been so generous with their time and considerate of my condition. I’ve been going to events and sometimes only staying an hour; but enjoying that hour.I went to a lovely patisserie for coffee and cake this week but told Diane I could only stay an hour because I can’t stand independently, or straighten, if I sit over the hour. Also I’m learning how to be a bit precious. My husband calls me the princess and the pea because everything has to be just so.  If a chair is too soft my back spasms, if my shoe laces are too tight I can’t put shoes on, if my teacup is too full I can’t lift it, if there is spice in my food I get IBS.  I went from being totally laid back, able to eat street food cooked by greasy haired, uncompliant to hygiene standards, cooks to being very needy.  I don’t beat myself up about it.  I’m not elderly or frail or sick but titanium is holding my neck together and if I’m not careful my cervical spine might topple like Jenga bricks again.  So, when I’m chatting I need my friend opposite me, not beside.  I can get in a car, but I can’t get out without help.  I need to be front of the loo queue because I can’t hold it. If we can’t be fussy now, when can we?


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When the kids were little I would make up silly songs randomly about their activities and personalities.  I’d wake them up with a song, tuck them in with a song.  For a couple of years myelopathy stole my voice.  It truly is a challenging condition.  I wake up and feel how I image the wolf did in Red Riding Hood when his stomach was filled with stone.  My body is so uncomfortably heavy, my bones hurt, my head is constantly under a vice like pressure…and that’s at the start of the day!  Understanding cervical myelopathy has been an uphill struggle, health professionals are not up to speed with a condition whose numbers are constantly rising.   When my daughter was little she was given many Barbies and the first thing she’d do is cut Barbie’s hair off. Grace, I’d say, it won’t grow back, once it’s cut, it’s cut and that’s like the spinal cord, damage is unrepairable – for now anyway.  It’s through contact with fellow suffers at www.facebook.com/groups/myelopathy.support that has me bursting into song again.  Knowing that I haven’t got some one-off, obscure condition, that I’m not alone, is a huge deal.

My youngest daughter was eighteen yesterday.  When I think of Caitlan it’s like my heart bursts like a popping champagne bottle.  She was ten when I was first admitted to hospital with what doctors thought was a stroke. We’re throwing her a party.  If I thought too much about the organisation I’d feel overwhelmed.  I’ve called it a casual gathering, that way expectations aren’t so high.  I think if you have alcohol and food a party will run itself.  My brother and his family are over from Kilkenny, Caitlan’s godparents from Dublin, I can’t wait.  Having something to look forward to is paramount.  I look forward to coffee with my husband, I love going to M&S Food Hall, I have book club, I love Grace coming home for the weekend.  My four children are the painkiller that get my weak body out of bed.  They are the smile on my face.  They understand my condition better than neurologists, they live with my highs and lows and they pick me up.

I am happy.   It’s a glorious feeling.  Once I get going I feel my life is full of possibility even though by four I will be totally slayed with pain and tiredness, my limbs will be unresponsive, and I will sway around the house, everything falling from my grip…I’ll end up in bed for a few hours but at nine I will be enjoying Love Island with my family. If I think of 2018 so far I’ve been part of a training video to help doctors diagnose myelopathy earlier, I’ve been skyped (never skyped before) by Dr Nidhi who is gathering info to support early diagnosis.  I’ve enjoyed two book club gatherings.  Met Sharon for a pub lunch.  Gone for innumerable coffees and cake and have the calories to prove it.

Caitlan recently returned from a geography trip to Iceland.  Putting on her crampons, about to step foot on a glacier she thought of me.  My mum will never do this, she’ll never see this powerful landscape with winds that take your breath away.   It’s true.  But it’s ok.  I’ve come a long way since my dramatic arrival at A&E.  I’m walking.  I’m sleeping.  I’m managing my pain.  I’m with my family.  I think of my life like Bear Grylls’ The Island.  Myelopathy is my island.  I’m not a giver upper and I’ve learnt to enjoy simple things.
Right now I’m sitting by the window, the sun is shining, a squirrel has just run the gauntlet across my garden fence while my two dogs are going bonkers.  Spanish rap is playing. I’m glad to be alive; the alternative is an eternity I’d like to avoid.  I’ve come to not expect too much of myself.  Myelopathy is the long game.

You can check out Alison’s blog My Hell opathy here 


Making new brain cells: how mice could help astronauts and DCM patients

By M Stewart
Editor: B Davies

It’s a commonly held belief that you can’t grow new brain cells as adult; you’re born with one hundred billion neurons and that’s as many as you’re getting. However, this isn’t quite the case. While new neurons don’t form in most parts of the human central nervous system (the brain and spinal cord), there are two special areas where new neurons do indeed arise after birth. These areas are found in specific parts of the brain with rather complicated names: the subgranular zone of the dentate gyrus  and the subventricular zone of the lateral ventricle. These two areas (which we call the ‘SGZ’ and ‘SVZ’ for short) contain what we call ‘neural stem cells’ (NSCs), which are able to produce new neurons throughout adult life. This production of new neurons from stem cells is called ‘neurogenesis’. 

Figure 1: Neurogenesis in the rodent (A) and human (B) brains. The final destinations of newly born neurons are shown in green. In both man and rodent one site is the dentate gyrus (DG). Neurons from the subventricular zone of the lateral ventricle (LV) end up in the olfactory bulb (OB) in rodents and in a part of the brain called the striatum in man. From Ernst et al 20153.

Interestingly, there’s a link between neural stem cell activity and exercise. Increased levels of physical activity have been shown to increase neurogenesis, and even restore it in mice who have stopped producing new neurons due to genetic manipulation1. Importantly, this increased neurogenesis has been associated with increased learning ability2. While we know quite a lot about what happens to neural stem cells when we move more, we don’t know much about what happens to neurogenesis when we move less. This gap in our knowledge actually rather important when we consider that prolonged reductions in movement are increasingly common. Lack of muscle activity occurs inn prolonged bed rest or neurological diseases which affect motor function, like spinal cord injury, multiple sclerosis or potentially DCM. Alternatively, effects equivalent to reduced movement can occur in prolonged stays in space, where there the reduced gravity means that muscles aren’t placed under load. 

As patients survive longer with neurological diseases and as we expect longer stays in space, it becomes more and more important to understand any links between immobility and neurogenesis for two reasons. Firstly, changes to neurogenesis could affect brain health – it may be that changes to neural stem cells following reduced mobility feed back into disease like MS or DCM and actually become part of the cause. Adult neurogenesis is greatly decreased in Huntington’s disease patients when compared to healthy people, suggesting that there could be a link between reduced neurogenesis may play a role in the disease3. Secondly, exploring the link may help us understand the effects of exercise on the brain. Reduced movement has been shown to impair memory function and learning4 and to change the chemical environment of the brain5. We may also be able to better understand the link between exercise and prevention of neurodegenerative conditions like Alzheimer’s disease, which is associated with degeneration in neurogenic areas6.

For all the above reasons, a team from Italy lead by Rafaella Adami recently set out to explore whether reduced movement lead to changes in neural stem cells7.
The study was done in mice. While mice do have some notable differences to humans in terms of the neural stem cells (see below), these experiments require the dissection of large amounts of brain tissue and immediately after death and so are practically impossible to do in humans. 

PictureFigure 2: Diagram of the HU mouse model. From Barbosa et al 20118

How was this study done?
The researchers wanted to recreate the conditions seen in situations (e.g. neurological diseases) where people can’t move very much. In these situations limbs are ‘unloaded’ – people aren’t using their arms or legs to move their weight around. in something called the ‘hindlimb unloading model’8 (HU) mouse model. Mice are suspended by their tales from the ceiling of a cage, taking the load off their hind legs, but leaving them free to walk on their front legs. Thus the hind legs don’t bear the mouse’s weight and are ‘unloaded’ (see figure 2). Adami et al put a group of mice in this position for 14 days, over which time their back leg muscles shrank significantly, as they would if they were unable to move them due to neurological disease (or if they were in space and carrying no weight!). After 14 days the mice were killed and their brains where dissected to examine the neural stem cells in the SVZ. Brains from mice which had been allowed to run around their cages freely where used for comparison (control). 

It’s important to stress that the mice were well looked after during the experiment. They always had access to as much food and water as the wanted and were visited by a vet 3 times during the 14 days of suspension. The showed the same key mouse behaviours as the free (control) mice and showed no increased levels of stress hormones. Taken together, all these factors strongly suggest that the mice suffered “little” stress during the experiment.

What were the results of the study?
Firstly the researchers looked at the number of proliferating (dviding/reproducing) cells found in the SVZ. In this case, proliferating cells were the stem cells that were dividing to make neurons, so more proliferation suggests more neurogenesis. Adami et al found that there were 70% fewer proliferating cells in the HU mice compared to controls – so neurogenesis was reduced. 

The team then wondered if this reduced proliferation meant that the stem cells themselves had changed in some way. To explore this possibility, they then took NSCs out of the HU and control mouse brains and grew them in a dish, to form a ball of stem cells and neurons. They saw that stem cells from HU mice divded more slowly than in controls, taking 7 days to double in number (the controls only took 2 days). They also checked that this slower rate of growth wasn’t due to cells dying.

Overall, these findings led the team to their first key result: reducing movement reduces the proliferative capacity of neural stem cells. 
Adami et al then wondered what caused this reduced proliferation. They discovered that it was because the more of the HU mouse stem cells appeared to have become stuck in the ‘resting state’ when compared to the control mouse stem cells. 69%  of HU stem cells were found to be in a resting state, compared to 57% of controls. Far more of the control cells were in a very active, dividing state (21% vs 13% of HU mice).
The researchers then looked at whether the neural stem cells were able to form mature neurons. They found that 6.8% of control stem cells could form mature neurons, whereas only 0.5% of HU stem cells could. 

This lead the team to their second key result: reducing movement reduces the maturation capabilities of neural stem cells. 
Next, Adami  et al explored whether the metabolism (energy production) of neural stem cells in HU mice had changed. Most neural stem cells produce energy by a process called glycolysis, which by produces a byproduct known as lactate. HU stem cells produced significantly less lactate than controls cells, suggesting that reduced movement gives neural stem cells an abnormal metabolism. 

Finally, to try and understand what could be underlying these changes, the researchers looked at gene expression in the neural stem cells. They found that expression of 2 genes were significantly different between HU and control samples. A gene known as CDKrap1 was 3.5x lower in HU stem cells than in controls, while a gene known as cdk6 was 2.3x high in HU stem cells. Overall, it appears that reduced movement changes the genes expressed in neural stem cells. Adami et al haven’t commented on what these different levels of cdkrap5 might mean, but they think that the higher levels of cdk6, which helps keep cells in the resting state rather than dividing, could explain the reduced neurogenesis seen in HU mice.

What do these results mean for DCM?
Right now, not a great deal. This work is still very much ‘blue sky research’ intended to see if the neural stem cells are worth further study for neurological disease (or space travel!). While its fascinating to see that that restricting movement leads to change in neural stem, we have to be cautious in how far we extrapolate the results to humans. Firstly, while mice and humans may be similar, they aren’t the same (newly born neurons rom the SVZ actually end up in a totally different places in mice and people). Secondly, while DCM can involve reduction in movement if nerve damage progresses to an extreme stage or pain becomes debilitating, it’s not quite as clear cut as in this mouse model. Therefore it’s hard to say if neural stem cells would undergo the same changes in DCM patients as they do here. Thirdly, it’s difficult to understand the implications of the results when we don’t fully understand how/if reduced neurogenesis contributes to neurological diseases. Furthermore, the consequences of reduced neurogenesis are likely to vary across conditions – changes to neurogenesis might be completely in DCM than they are for something like Huntington’s. 
The next step will be to explore the nature of neural stem cells in other mouse models of reduced movement, such as multiple sclerosis, spinal cord injury and DCM to see if neural stem cells undergo similar reductions in neurogenesis. Then we’ll need to determine how/if reduced neurogenesis might contribute to the problems we see in these conditions. If such a contribution was confirmed, this could be a breakthrough in our understanding of how DCM develops. We might even then be able to developing new treatments which target the neural stem cells themselves. However, there are many steps we must take before we reach that stage – for now we’ll have to move slowly. Watch this space for more!


1.    Farioli-Vecchioli, S. et al. Running Rescues Defective Adult Neurogenesis by Shortening the Length of the Cell Cycle of Neural Stem and Progenitor Cells. Stem Cells 32, 1968–1982 (2014).
2.    van Praag, H., Shubert, T., Zhao, C. & Gage, F. H. Exercise Enhances Learning and Hippocampal Neurogenesis in Aged Mice. J. Neurosci. 25, 8680–8685 (2005).
3.    Ernst, A. & Frisén, J. Adult Neurogenesis in Humans- Common and Unique Traits in Mammals. PLOS Biol. 13, e1002045 (2015).
4.    Wang, T. et al. iTRAQ-based proteomics analysis of hippocampus in spatial memory deficiency rats induced by simulated microgravity. J. Proteomics 160, 64–73 (2017).
5.    Dupont, E., Canu, M.-H., Stevens, L. & Falempin, M. Effects of a 14-day period of hindpaw sensory restriction on mRNA and protein levels of NGF and BDNF in the hindpaw primary somatosensory cortex. Brain Res. Mol. Brain Res. 133, 78–86 (2005).
6.    Guure, C. B., Ibrahim, N. A., Adam, M. B. & Said, S. M. Impact of Physical Activity on Cognitive Decline, Dementia, and Its Subtypes: Meta-Analysis of Prospective Studies. Biomed Res. Int. 2017, 1–13 (2017).
7.    Adami, R. et al. Reduction of Movement in Neurological Diseases: Effects on Neural Stem Cells Characteristics. Front. Neurosci. 12, 336 (2018).
8.    Barbosa, A. A. et al. Bone mineral density of rat femurs after hindlimb unloading and different physical rehabilitation programs. Rev. Ceres 58, 407–412 (2011).


The Power of the Word

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​By Iwan Sadler

​Words can be powerful when spoken or in thought. Words are used on so many different levels from the expression of your thoughts to the decision you will make within the moment.Peace is delivered with words but also wars are started by the spoken or written word.

We choose our life choices on words. The average person can speak between 125 and 150 words a minute, but the rate of “expanded inner speech! (word-for-word) is slightly faster than verbal speech. That puts into perspective how many words enter our train of thought on a daily basis. Some decisions can sometimes be made in seconds – other decisions take a lot longer. One thing is for certain: they are all decided with words. 

With the technological development of the internet and mobile phones, words are used more now than ever. The average person uses their mobile phone for approximately four hours per day and around 18.7 billion text messages are sent around the world on a daily basis. And we can’t forget the amount of words we use on our social media platforms. I think you’ll agree that’s a great quantity of words.

This just shows how important words are for our social integration and how powerful words can be. They say that concurring thoughts will eventually become your actions so should we be careful at what we think? Many people think that words, once spoken, cannot be taken back and the action of those words, even if they were delivered within seconds, will last and echo for a lot longer. 
So should we be more careful with what we choose to say? Do words really cut deeper than a knife and leave longer lasting invisible scars? Could our words to a situation decide the overall reactive decision to a situation? Can our words totally change a decision within a scenario? The answer is “Yes!” Our action will always lead to a reaction and the outcome will always depend on our words.

“Where are you going with all this?” you may ask and “What has this got to do with living with a chronic condition?” Could the words we think and use every day help us deal with our condition? Remember that the actual words you say matter, not just the thoughts you convey. Try to use more positive words on a daily basis even if you are unable to replace negative words with positive ones, try replacing them with more accurate neutral ones. Instead of, “This chair is horrible”, try“This chair is not for me.”

Try not to use absolutes, especially in relation to your goals, where falling short of your expectations can be particularly depressing. These words and phrases include: “always”, “never”, “nothing” – the list goes on. Replace them with nuance. Instead of, “I can walk that far”, try “Sometimes I can’t walk that far”.

So the key is to think and speak in a more positive manner. Positive thinking often starts with self-talk. Self-talk is the endless stream of unspoken thoughts that run through your head. These automatic thoughts can be positive or negative. Some of your self-talk comes from logic and reason. Other self-talk may arise from misconceptions that you create because of lack of information.

Positive thinking doesn’t mean that you keep your head in the sand and ignore life’s less pleasant situations. Positive thinking just means that you approach unpleasantness in a more positive and productive way. You think the best is going to happen, not the worst.

The Health Benefits of Positive Thinking
Researchers continue to explore the effects of positive thinking and optimism on health. Health benefits that positive thinking may provide include:

  • Increased life span
  • Lower rates of depression
  • Lower levels of distress
  • Greater resistance to the common cold
  • Better psychological and physical well-being
  • Better cardiovascular health and reduced risk of death from cardiovascular disease
  • Better coping skills during hardships and times of stress

You can learn to turn negative thinking into positive thinking. The process is simple, but it does take time and practice – you’re creating a new habit, after all.

If you are looking for another way to relieve discomfort that doesn’t involve drugs, some age-old techniques – including meditation and yoga as well as newer variations, may help reduce your need for pain medication.
Research suggests that because pain involves both the mind and the body, mind-body therapies may have the capacity to alleviate pain by changing the way you perceive it. How you feel pain is influenced by your genetic makeup, emotions, personality, and lifestyle. It’s also influenced by past experience. If you’ve been in pain for a while, your brain may have rewired itself to perceive pain signals even after the signals aren’t being sent any more. Stress and pain are tightly connected and can have a strong influence on each other. Therefore, if positive thinking is able to counter some of the effects of chronic stress, it could also help lower pain levels.


Practising  Positive Thinking Every Day
If you tend to have a negative outlook, don’t expect to become an optimist overnight. But with practice, eventually your self-talk will contain less self-criticism and more self-acceptance. You may also become less critical of the world around you.

When your state of mind is generally optimistic, you’re better able to handle everyday stress in a more constructive way. That ability may contribute to the widely observed health benefits of positive thinking.

​Final Thought
Being careful with our self talk is essential for our own. wellbeing. And we can also take care to avoid ill-considered words that could damage the wellbeing of others. 
Our minds too often seem to be programmed to keep recalling and dwelling on negative comments which drown out or dismiss any positive feedback we have received. 

The tongue is the strongest muscle in the human body so be careful on how you use it may it be online by txt or word of mouth because “words can only be forgiven not forgotten”.

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