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:
Spoon Theory is another approach to managing energy:
Managing pain levels, like fatigue, links to the ideas of pacing and spoon theory. There are also specific resources about pain such as:
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/
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:
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
A great article from Brain & Life (American academy of neurology) on meditation called Inner peace.
Brain & Life
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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:
A summary of compassion focused therapy ideas can be found at :
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:
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:
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 firstname.lastname@example.org (they aim to respond to email within 24 hours).
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
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.
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.
by A Badran
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.
1. Badran et al. Is there a role for postoperative physiotherapy in degenerative cervical myelopathy? A systematic review. Clinical Rehabilitation. April 2018.
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!  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!
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