#GuestPost & #MSChampion: follow-up letter from Olga

How is Olga's bespoke exercise programme going? #BrainHealth #MSChampion #MSBlog

Some of you enjoyed reading about Olga Bobrovnikova's physical rehabilitation programme. I saw her two weeks ago when I spoke at the EU Parliament on the need for early-effective treatment in MS. When I saw Olga she promised to send me an update. 

Olga's rehabilitation is based on the 'use it or lose it' principle. There is very good evidence from the spinal cord literature that when spinal cord injured patients are making a recovery they need intense physiotherapy and exercise to encourage recovery of function. In other words if you don't create the substrate for promoting recovery it won't occur. Physiotherapy is an issue in the NHS, with limited resources rehabilitation tends to given as short bursts and the patient is then expected to continue the rehab at home. Therein lies the problem, many pwMS simply don't have the energy or drive to keep up with their exercise and rehabilitation programmes. Any solutions? Maybe Olga's story will inspire you to come up with a solution or to share your own experiences with us. 

Hello Toes - one year on

It is a year since I commenced my own “hello toes” rehab scheme and while progress has been slow and frustrating, I have achieved positive results. I am however left with one big question – what is neural energy, is there any reserve and how is it replenished?

Because the fatigue causes day by day variations in my performance and I need reduce these. When I get tired – my “MS walk” comes back.

I started the rehab with a simple concept – balance is affected where the feet meet the ground and I discovered my toes were not performing their function of maintaining balance, because my right toes were “neurally dead”; no sense and no motor capability.

This situation, that had escaped all previous assessments and physiotherapeutic treatments, both shocked me and provoked a question –

If MS diagnosis is dependent on clinical symptoms, just how much of my “MS progression” is due to increasing disease and how much is due to collateral and increasing deterioration around the initial damage, as the effects of ageing and compensatory distortion of the muscular structure, combine over a period of years.

Being told by consultant that I was becoming secondary progressive was my wake up call – and the shock that prompted me to do something different – i.e. start my own rehab.

What is different about my method?

I aim to reconnect the neural pathways – I aim to use neural plasticity to rebuild the ability to walk correctly.

My diagnosis of becoming secondary progressive was based on my own reports to my neurologist that I was increasingly fatigued, I had fallen over several times and I was losing confidence and being stressed by the challenge of normal activity. In spite of 2 years prescribed physiotherapy my progress was one way – downwards!

Firstly let’s talk about neural pathways and messages.

I view messages to and from the brain as a serial sequence of data. The data is multi modal and multi functional, a sequence of arousal and valence signals (direction and amplitude) that can interact.

Right or wrong – I decided that work on this neural message stream was best commenced from the extremity, working gradually towards the brain. ie toes first. In my case logical, as the toes were not working or generating/ receiving meaningful messages.

I also decided to work out exclusively on the damaged side, as any work with the good side will exaggerate the existing differences.

What about the neural pathways to the toes? They are different to the fingers because we don’t grip and we don’t splay our toes – except there is plenty of evidence that those without hands can learn to play the piano and paint with their toes!

So each toe has more than one pathway and each one needs to be re-established. This is repeated for each joint in the leg. Just look at the number of muscles needing control in the thigh.

So my method requires attention, in ascending order to every possible pathway and combination of pathways, simply to ensure control can be affected.

But this doesn’t guarantee walking correctly; this requires its own strategy – to be employed only when all the pathways are working.

Walking, like any other act is driven by intent and imagination so re-education of correct walking requires more than one foot in front of the other. It requires very precise identical rhythmic movement of both legs. The variations are so small they are impossible to measure visually. But by listening it is easier to hear discrepancies.

So my walking education has several strategies - walking with and copying a sympathetic mentor, varying pace, varying length, varying rhythm.

I finally achieved a good walk, a limbic un-thinking walk, but only for intermittent periods. What seems preventing this walk continuing appears to be the fatigue.

This is my cry for help – how do I enhance the amount of neural energy, how do I restore the depleted store.

I have two ideas but no science to help – as neural energy is electro chemical it is possible to affect neural charges from outside the body?

I seem to get a recharge from sea water immersion and I seem to get a discharge from Epsom salt baths – is this crazy?

Is resting the only known method of restoring neural energy?

If so – what type of rest?

Is it possible that there are different resources for limbic motor and associative circuits? Are different types of sleep needed to restore the different circuits? Anyhow I am carrying on!


Short Biography: Olga Bobrovnikova is a concert pianist with MS. Olga trained in the Moscow Conservatory and Gnessin Institute in Chamber Piano Performance and Therapy for Music. Since her diagnosis of MS in Brussels fourteen years after her first symptoms, she has for 15 years dedicated to raising awareness and funds for MS Charities and Organisations. As Ambassador for the Year of the Brain she reviewed the research abstracts and literature on Music and the Brain to unravel the mysteries of music and piano performance, which she describes in her book “Playing the Pathways of My Brain”. Her concept of a balanced performance triangle, comprising physical, mental and emotional functions, is based on separate rewards from limbic, motor and associative pathways. Employing these ideas, her new, progressive method for early teaching of music, uses children’s instinctive mirror learning responses, to establish the physical and mental functional pathways, essential for cognitive learning.

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