I met Olga Bobrovnikva, at an MS event, almost 10 years years ago and we have been in contact ever since. She is a MS Champion and an inspiration to many. If you get a chance please read her book ‘Playing the Pathways of My Brain‘; I have a signed copy if anyone wants to borrow it.
Three years ago four falls within the space of a few weeks prompted me to seek help from my neurologist.
Two years later, after assessment , review, advice and physiotherapy with a succession of “clinical specialists” and big efforts at my health club and yoga, I was suffering from increasing gait and fatigue problems even though I was managing my balance a little better and was physically in good shape.
Due to my national health care system, I was paying a significant proportion of the bi weekly physio costs and I finally gave up in total despair.
Then my partner and collaborator on my book “Playing the Pathways” took as he said “an aviation attitude” to my problems. “Balance is about your interface with the ground” he said, and immediately looked at my feet and their ability to mange the interface.
He discovered four toes on my right foot had no sensory or motor capability, something all my previous assessments and therapy had failed to reveal.
As he had, “ done time” in Headley Court in 1963 to learn to walk again after DVT damage, he set about resistive flexions on each “dead” toe. Within a few short sessions some resistance was being generated and sensation returned. Now 8 months later we still do 2 sessions a day and the performance of right and left toes is identical.
But the toes were just the starting point for a new regime, as it was evident that the rest of my right leg functions were not optimum. We set out to check and repair, with massage and resisting flexion, each joint in a sequence from toes, feet, ankle, knee, thigh, hips and back. The sequence being necessary, while also eliminating other exercises, to ensure elimination of compensatory pathways and muscle usage.
It is now quite evident to us that my MS damaged a neural pathway, maybe to one muscle and that over the last 25 years my body has gradually compensated for this and the compensation created collateral degradation which finally met my normal age degradation which resulted in my falling over problems.
My main successes after 8 months are:
- Restoration of motor and sensory functions in the 4 right toes
- Reduction almost elimination of paresthesia in the sole of the foot
- Matched R/L flexions and power in toes ankles and knees
- Ability to flex right leg rearwards
- Ability to perform cycling movements while laying on back
- Ability to describe circles in the air with right ankle and toes
- Ability to describe circles in the air with right leg, ankle and toes
- Ability to run with springy ankles and elevated knees
- Ability to put on sock and knickers in standing and sitting positions
- Ability to vary pace length and speed
- Improvement of upward knee flexion and power
- Improved right leg balance
- Overall reduction in spasticity and knowledge of how to provoke huge spacticity to order!
- Intermittent gait improvement (fatigue related)
- At best fully limbic gait control to automatically step over obstacles
My Immediate Targets are:
- Further correction to toe position on walking
- Improve power of upward knee flexion
- Improve ability to hitch hips (hula hoop)
- Increase the bulk and response of the Right leg medial thigh muscles (Pectineus and Gracilis)
I do not know if my experience is typical, regarding failure of conventional rehab or success by home rehab. The need for two or three 10 minute sessions daily makes this difficult to achieve with the conventional rehab systems.
I have hope again, as I have halted my “progression”. I want to get this “episode” to as many people with MS and clinicians as possible, to find out if others can use and replicate this. So I would love to ask all my PwMS fellows – please check your toes !
If you think this has value would you please help me to do this?
I remain, sincerely
Mu-Sic Foundation Association for Global Awareness of MS & the Brain
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.