Friday, 17 March 2017

#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!


Olga

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.

9 comments:

  1. Brilliantly interesting post Olga - thanks for coming back with the update.
    Hope that there are scientists out there able to answer some or all of the pertinent questions you have raised.
    Sitting on the sofa having one of my 'whimpy' days I'm as interested as you are in the questions around tiredness/fatigue. For many a long year before diagnosis a day like today would see me heading into a warm bath to assist with rejuvenation and this morning has been no different - what does influence 'lifting' MS fatigue?
    Your post references to foot and walking exercises, poses as many questions as it answers for me - primarily what exercises have you done for your toes and how regularly? In trying to ensure I do what I can for my mental and physical capabilities I find days like today frustrating. To what extent I wonder does neuro plasticity and improving message to and from the brain require daily application? This is something very difficult for most of us with MS to achieve. For myself I'm taking the attitude 'little and often' and dearly hope that this is sufficient!
    Please do let us know how you get on and if possible do let us know if there are things you'd recommend other PwMS consider trying or adopting , if they are able to and wish to.

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  2. Agreed, interesting and inspiring post, thank you Olga. I hope you continue to improve function of your toes and upwards, and solve the puzzle of how to achieve the right kind of rest to reduce fatigue. Bouncy

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  3. Hah… multimodal data, message sequences..
    I guess Olga’s husband knows well about Shannons theorem and limits it poses on transmission over noisy links. And MS affected links are soo nooisy.. I wonder is it possible to implement Reed-Solomon forward error correction coding using neural networks to gain 1or 2 dBm signal to noise ratio?..

    To be serious, Olga as I know lives somewhere inside EU, and stimulants like modafinil are legal and prescribed for ms fatigue in some EU countries with moderate success. I wonder if she tried

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  4. Hello Olga,

    Ampyra's (Fampyra) mechanism of action should be of interest to you. In the USA it is prescribed for ambulation as that is how pharma moved it faster through the FDA.

    I know quite a few people using Ampyra. I sorta live in MS central, Upstate Western NY State (USA) where MS is *Hot*. Over 20,000+ cases within a 100 mile radius of where I sit right now.

    I have Ampyra but have yet to try it due to other complications unrelated to MS in my brain that needed and addressing and subsequent recovery. I hope to try the medication in perhaps 8 months.

    That said, like you I too had massive fatigue as well as other symptoms. I too have worked on regimens of recovery external of professional services.

    Low Dose Naltrexone was a big winner for me towards symptoms management. Towards MS "LDN" results are anecdotal and what studies do exist are inconclusive. I've spoken to many pwMS who take LDN and at some MS local forums spoke to patients about it. For me, sized increase in energy and reduction of symptoms. My urinary incontinence for example disappeared. If I come off LDN it reappears.

    Last year I met a lady at a local event. She was on Tysabri and was stricken with PML. Due to a cascade of MS and PML based damage she was near completely without energy and subjected to first a walker, then a wheelchair.

    Her husband eavesdropped a conversation I was having with another patient about LDN. At the end of the function he asked speak to me. Several months later at another function there he and she were again. He came up to me and hugged me, he was crying. She had talked to her Neuro about LDN and he was not jazzed on the idea, essentially calling it horse-hockey. Then she had an appointment with her Psychiatrist who researched for her and got it prescribed through a differing Neuro he was associated with.

    He told me for the first time in 3 years her mood level was far better. She had started baking again which she'd not done for years. Her energy levels shot upwards and yes, she was back using a walker.

    Results with LDN vary. Some pwMS see no results. Others some, those such as myself and her, quite dramatic. Its really pretty benign as meds go and very affordable.

    Personally having connected to so many pwMS I think it should be an option on the table from the moment MS is diagnosed. That is to say, if a person w/ MS can take LDN then it should be tried right at the point of any disability accrual. If it doesnt work, ok, off it. If some gains are made. Keep on it.

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  5. ----

    In as far as exercise and regaining lost function via neuroplasticity again all things sit anecdotal. However, while research for example cant matter of fact proof varied mechanisms just like that of dieting in MS this does not warrant a dismissal by patients.

    You mention your toes for example. There are of course static devices used for drop foot that can help immensely with ambulation. My fiance's ex's son was severely hurt in a sledding accident. His toes, one leg, was told he'd never walk again by numerous physicians. It took her three years but he walks.

    How?

    All forms of stimulation she could muster and measure any gains. Gains are not necessarily rapid. So it is not like "I'll do this for 2 or 3 weeks and see" More like I will do this for months and see.

    She used salts, hot cold packs, oils and consistent working of the musculature. She worked his leg and foot with her hands. Massages, and literally working his limb. He had to stay focused on what she was doing, no TV, no distractions.

    Then she did research on leg/foot of the musculature and major nerves involved. She bought a TENS unit and began using it. Viola... 3 years later after the sledding accident he was walking.

    That said, the damage was peripheral nerve damage in his case. However, TENS *IS* applicable still with CNS damage. The electrical stimulation provided not only stimulates the musculature but in turn gets signal to the CNS assuming that said nerves are not completed transected.

    You need to learn how to use TENS, important, if you care try it and start on rather low settings with the device. Learn where to place the pads and target musculature and nerves.

    I've known many now using TENS and some have no results and some like LDN, WOW! Big gains. In fact one gentlemen I know of has used it now since he met me near a year and a half ago for a spastic arm and its worked wonders over that term of time.

    ----

    There is also Neurolumen you can see at my web: (http://www.msunites.com/blog/2015/08/15/neurolumen-a-new-potential-pain-management-device/)

    I now know several people using this and word has it a few Neurologists are now trying it limited basis in clinic. It has worked wonders in some pwMS.

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  6. Your use it or loose it mindset is spot on many times but certainly not all the time. For example, I've made enormous gains against my MS trying many things myself all rather benign. Even some mock trials in a small group of MS friends such as adult coloring towards symptoms management where our anecdotal results were simply amazing.

    I can say attitude and mindfulness count. One has to have the mindset of "I will make gains." No maybe's.

    Towards exercise regimen and fatigue? I recommend the Total Gym to anyone/everyone. This device can be very low impact and the gains just phenomenal and one can target literally any part of the body.

    A friend of mine who LOVED to jog or run has had some bone issues (hip/leg) reducing his ability to do so, pain. He tried my Total Gym as is totally hooked now.

    I've now had at least 40 people locally with MS using the device. Most picked them up used from Craigslist for a fraction of the retail cost and not a one of those people have not had results. It is AMAZING for MS.

    Need to start slow, know how far you can push yourself with it and stay a good distance clear of that edge. Exercise w/ many pwMS is a two sided sword. The fatigue due to the exertion can mount. But usually a short time afterwards one's battery is charged per se and more energy is there.

    Its all about finding that balance of not being wiped out but making gains against the fatigue. Then push it up a wee little bit every several weeks, just a little.

    There are other anecdotal means and again, I've spoke with pwMS who have tried such as tDCS, direct current stimulation. Some say did zero, some say helped cognition, some say helped other symptoms.

    As one poster noted as well, Modafinil can or not have some good results. I tend to be more of the mind of "it always takes more than a pill" to make real gains against MS even though LDN did so for me.

    Lastly, You surely have heard of "Spoon theory." I dont prescribe to it. The idea is "nn" energy and how you spend it. I think it is has a validity in that we need as pwMS be conscience of our limits but in the same sense, dont allow MS to be a life limiter of, "I cant."

    I made up a term called "Fork Theory" (LOL). pwMS need to keep stabbing away to try make gains. I'll try near anything if I can put some logic as to why. The first thing I do everyday is a natural energy nutri-bullet and for me, it works.

    The brain is a biocomputer that is much more complex than traditional electronics. It needs try stay agile too. I never thought I'd learn computer programming but decided to give it a whirl. I am also a caregiver by trade. I was going for my RN degree when stricken' by MS. I am a CNA.

    When you consider that your brain is a bio computer and get a fundamental grasp on what that means in terms of inputs/outputs, conditional logic, neural networks not only is it fascinating but I truly believe helps to target neuroplasticity. My fiance' taught me a good bit about Neural Nets as he use to work on NN research at RIT along with multiprocessing / parallel processing.

    That all said... Amazingly, MS saved my life believe it or not :)

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  7. I am loving the comments here almost more than the post - especially "MS saved my life" I don't quite rationally understand that but it makes gut sense to me.

    Anyway - me.

    SPMS, 1996 (45yo) diagnosis, EDSS 8.5, 9HPT 90sec, 0-45 UK/Canada. Now Australia

    To the non-ambulant leg tone and flexibility is a huge issue. So much so that I suggest a new diagnosis - "wheelchairitis" I have had this for 15 years now but pedalling has halted its progression.

    The key to my pedalling is the motorised pedal machine. A small, use-it-from-your-arm-chair unit (that can also be put on the table for arm work) gives the assistance needed to complete rotation and, if relevant, perhaps counter fatigue. I need feedback on this last assertion as I'm one of the lucky 3% who don't suffer fatigue.

    They cost less than $100 in the US - made in China - but here's the rub. Institutional use is banned in Australia as no 240V is safety certified.

    My engineering company friend and I are working on this. When the right unit can be found, certified and mass imported we will hit the wide open Australian market. "One at the foot of every aged care bed" is my GP's vision

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  8. Whoa! Can't thank all of you enough for the comments you've added in response to Olga's post. The wealth of knowledge, experience and information I am able to obtain from this site, lifts me and makes me more determined to continue working at being the best I can be 16months post diagnosis and a year on from my most disabling relapse. It's apparent that there is a significant number of PwMS using a whole variety of means to off-set the impacts of this disease - I will certainly be taking a closer look at the suggestions/recommendations put forward here.

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  9. If i may. i will give my modest contribuciĆ³n ....My 2 main symptoms are cogniteve fog and fatigue
    Been doing 5:2 diet ,and on the days that i fast have no cognitive fog nor fatigue, also (if you can ) try exercise with emtpy stomach before the first meal of the day...My advise :start slow ,first avoid breakfast and work from there,cut all the refine carbs as much as you can ...Hope it help...Luis

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