On the weekend somebody made the following comment, which prompted me to post a very kind and insightful letter I received from Olga’s partner that talks to this point.
First, thank you for publicising Olga’s rehab story on your blog. The boost to her belief in what we are doing was beneficial.
Everything we are doing stemmed from our 5 year look at music in the brain which gave me (right or wrong ) a simple view of the architecture of the brain: essentially three functional levels (limbic motor and associative), fed by multi-modal messages integrated in the cerebellum and controlled by parallel direct path messages at the motor level.
As a radar specialist – I see the architecture has a lot in common with radar data processors!
The Calls to Action of the first Pan-European multi-stakeholder colloquium in 2014 (see abstract below) prompted me to write to RIMS suggesting that the current EDSS method of assessing MS patients was inadequate and crude. While this did not directly address the calls , it clearly affected three of them:
Call 4: Develop new tools to better capture the total clinical burden of MS.
Call 5: Develop a protocol for standardisation of magnetic resonance imaging in MS in order to optimise its use as a marker of disability progression in clinical research and daily clinical practice
Call 9: Stimulate the implementation of specialised care centres and support people with MS remaining (physically) active and at work.
I suggested that a detailed mapping of individual functional articulations: fingers, elbows, shoulders, toes, ankles, knees and hips were necessary to reveal the precise neural pathway damage and disability.
Many years without therapy or inappropriate therapy cause collateral neural dysfunctions.
I strongly feel that traditional therapeutic approach giving bilateral exercise simply distorts and enhances the strong pathways while doing nothing to strengthen the weak, broken or demylenated pathways.
Discovering that Olga has no function or feeling in the toes of her right foot was a wake up call and prompted my simple question how on earth she could be expected to balance in that condition. She was being told the balance mechanism in her brain was broken!
As you know we set out to find every functional weakness and to treat them with resistive flexions. The key principle being – start at the extremity and get the individual pathways “re-educated”. From the rate of progress it became evident that once the brain recognised the need for the pathway it rapidly “plasticized” many micro pathways to give rapid increases in strength.
I was careful to work progressively as I feel any inappropriate or out of sequence work will not build a fully efficient total functional pathway(s).
It was also evident that the lack of functional pathways had allowed certain muscles to virtually disappear, while causing the “good” side muscles to grow in compensation.
We are, after nearly a year at the point of educating the hip region and building the final muscles in the sequence. And on a good day and for some time, Olga is able to walk perfectly.
Regarding the walking re-education – it cannot be achieved mechanically.
The minute variations of human timing can only be “mirrored” from following a human pace maker. For the first time in 15 years Olga and I can walk in step and she can respond to my variations in pace length and frequency.
We don’t know if Olga is a unique case of if the process will work with some, the majority or everyone.
I am so aware that this methodology cannot be used in the conventional physio system, because the sessions are usually less that 5 minutes and 2 to 3 times a day 7 days a week.
It would work in an inpatient environment, my 3 months at Headley Court following DVT pulmonary etc – taught a dead leg to walk.
It is possible the most effective way to roll out something would be to recruit family members to learn to become “re-trainers”
Once again – thank you for supporting Olga
I would be happy for this new version to be publicised.
Interestingly many of the principles of teaching the young brain music are directly applicable to retraining and rehabilitation of functions.
I am an Aviation Consultant!
It is a disgrace! It does not even allow for proper rehabilitation, it simply measures the “inevitable” progress to the wheelchair as a justification for more medication.
If what Olga has achieved is proven repeatable – then the dynamic and costs of MS could be turned on their head. This could disrupt a very profitable status quo!
But Olga and I both believe in what we are doing – perhaps it only about belief! If you go through the same motions without belief – will you get the same results?
Grumpy and frustrated!
Feys et al. The importance of a multi-disciplinary perspective and patient activation programmes in MS management. Mult Scler. 2016 Aug;22(2 Suppl):34-46.
OBJECTIVE: To summarise the multi-disciplinary perspective of MS, with focus on the organisation of a multi-disciplinary care team and possibilities to support patient activation.
METHODS: This review reflects the content of the presentations, audience polling results and discussions on the multi-disciplinary perspective of MS during the second Pan-European MS Multi-stakeholder Colloquium.
RESULTS: In many countries, the neurologist with or without the support of an MS nurse is responsible for the long-term care of MS patients. When needed, they should refer to other (non-)medical specialists. However, the patient should be empowered as well to manage his/her disease and to implement a physically active lifestyle in order to improve treatment outcomes and quality of life.
CONCLUSION: To create equal access to care for MS patients across Europe, evidence-based standards of care, symptom self-monitoring tools and educational programmes for patients and healthcare professionals including non-medical treatment strategies should be developed at the European level.
9 thoughts on “#GuestPost & #MSChampion: a follow-up letter from Olga’s partner”
This targeted approach is exactly what my neurophysio has done with me. I thought this was the standard treatment model but I fear not, judging from conversations with other MSers. I found equal expertise in the 'biomechanical devices engineers' (i.e. physios trained to fit FES devices) and the FES clinic. I have been lucky enough to get weekly physio (mostly hydro) since diagnosis in 2003: it's kept me going. If I hadn't been able to self-fund, I truly believe I would be in the wheelchair by now.
I feel this is so important and helpful! I am in the US and read you daily. Can you please post some contact information for those in US? I have been reading up on this and would like to work on. I am heading into Secondary MS. Thank you.
If you go through the same motions without benign course – will you get the same results? I doubt it.
Re: "If you go through the same motions without benign course – will you get the same results? I doubt it."Recovery of function is dependent on reserve capacity, age and using it (or rehab).
That was a bit of sarcasm, Prof G.
I applaud Paul's efforts and sympathise with his frustrations. But his complaints regarding the EDSS and measuring MS disability are not problems with the MS therapy world: EDSS and measuring MS disability is squarely in the neuros' domain. Neuros should be leading change on this (but how can they if they need consensus before embracing change?)So while I understand Paul's triumphs and frustrations, I don't understand that relevance of the linked article about the importance of multi-disciplinary perspective and patient activation programmes in MS management…. How is the multi disciplinary perspective going to help neuros find a better way of measuring disability progression? Neuros can't even agree that the EDSS needs change?
It interesting about family becoming re-trainers for MS. Also the role of peer trainers, expert patients and human libraries involved in MS care.It seems these roles are merging more so with some of the more entry level HCP roles. Like Health Care Assistants and the recent talk of nursing assistant (or nursing associate) posts.
I have had a problem with the EDSS since I first came across it. It is a system for measuring disability that starts by talking about different functional systems and changes half way through to looking at only one (ability to walk). This is a logical inconsistency that makes it unfit for purpose. There are other problems with it too. The gaps between points in the second half of the scale are huge. For example, I have been at 6.5 for years, but have deteriorated massively over this time – I frequently need a walker now (not even mentioned on the EDSS) but on a good day still use two sticks. I use a wheelchair when I'm outside or in a hurry (particularly in a hurry to get to the loo – my urge incontinence is a different functional system so became irrelevant on the EDSS once I started to use a stick). It takes no account of the fluctuations that many people with MS see over the course of a day – I personally can often hardly walk in the morning but can often use a cross-trainer by the evening. There's no recognition of the relapsing-remitting nature of some MS in the EDSS. I'm sure other readers can point out other problems with the EDSS, because it's just not a helpful tool.Is there a campaign we can join to get neurologists to use a more sensible assessment tool for people with MS? Could the Barts MS team start one? If you already have, can pwMS sign up and promise to speak to our neurologists about it?
I have absolutely no faith that the EDSS measurement would catch progression in disability as quickly as I would want it to do so, to enable me to consider current/future treatment. The only faith I have is that by the time EDSS reflected progression, it would be way too late to do much about it.