A worn path

Why walking and standing therapy is important.

Humans are designed to stand, walk and run; it is a primary function of our physiology and why we are built the way we are. Our ability to stand upright differentiates us from so many other animals; it also means it’s vital for our natural state of growth.

We need to stand because it:

  • Strengthens our bone density
  • Stretches muscles
  • Improves respiration
  • Enhances circulation
  • Aids digestion, bowel and bladder function
  • Facilitates hip formation
  • Improves skin integrity
  • Strengthens our core
  • Improves balance

These 9 points all lead to improved wellbeing, alertness and sleeping patterns.

Whilst the simple act of standing does all these wonderful things, the upgrade is walking, but learn to stand before you walk.

Why is it necessary for us to keep people with Rett syndrome walking or trying to walk?

When I say walking, I include the therapeutic aids like treadmills, harnesses and the Upsee.

Walking is Therapy

There is a lot of convincing study happening around the world that is proving that walking is therapy for both the human body and mind. Conscious walking is being taught as a way to slow down the onset of Parkinson’s Disease.

These reasons alone are enough but there is more.

Walking is a superb conditioner for our brain, there is scientific evidence that walking improves concentration, learning-ability and abstract reasoning.

Walking is not a linear progression, the elements we use to learn to walk all overlap so it’s okay if it’s mixed. Walking requires balance, muscle strength, body & spatial awareness and most vitally the brain.


The first thing a child has to learn in order to walk is balance. Help your child master balance and then move onto gait. If balance is mastered the gait is easier because the balance networks are active and working.

Walking memory (The brain)


WalkerAs we develop skills our brain creates synaptic pathways which facilitate the “memory” of a learned skill. Learning a skill is a linear process, where the synapses fire along a forming pathway. When the pathway is formed, the skill is learned.

It has been proven that when we don’t practice a learned skill after a period of time we will lose that skill. This is called learned nonuse, which is why it is so important to maintain the skill.

You can also lose a skill due to brain damage but it has been proven that the skill can be re-learned by using another undamaged part of the brain. It is the power of neuroplasticity that allows one part of the brain to do what another part was “designed to do”.

This process is called Neurorehabilitation. In Rett syndrome, quite often walking has not been learned, which is why the process of teaching this skill is called Neuro-habilitation – because it’s about teaching new abilities, not relearning abilities.

Rettsyndrome.org announced research into Neuro-habilitation funding last year.

How I describe this process for myself

The way I understand this is to think about walking from my house to my best friends.

The first time I walk, I figure out how to get there, traversing possible obstacles and sometimes even backtracking to choose an unobstructed pathway. Once I have made it to the house, it’s a case of remembering how to do it again.

Over a period of time I begin to wear away a path. That path get’s wider and wider as I use it, until it’s completely defined. Walking to the house is now second nature and carved firmly into my memory.

What if we were to move to another house?

I would have to learn a new path. The knowledge of walking remains, but I have to find a new pathway to quickly and efficiently get to my goal.

The principles of how our brain learns to walk are explained especially well by Dr Steve Kaminsky here:

Four phases to building networks.

Phase 1. Unconscious incompetence.

Watch a baby move his/her arms, legs and head. They are moving them all the time and although they do not know what they are doing, their motor sensory networks are being set up.

These networks are the foundation of all movements that they will use later in life.

Phase 2. Conscious incompetence. 

The baby or child knows what they want to do but are incompetent in achieving their goal. Reaching for their spoon, or trying to get the spoon to their mouth, or in the case of walking they can stand and take a few steps and fall.

The networks are being built and the individual has to really concentrate to make the action happen, but the networks are not completely formed.

Phase 3. Conscious competence.

The child knows what they want to do and they can do it but are actively thinking about every movement. The child walks across the room without falling.

The networks are all firing and they are being wired for the future.

Phase 4 Unconscious competence.

The child no longer thinks about walking, it is happening without thinking about it. They can change direction without thinking about it, they can do something else while walking.

The network is fully integrated into the central nervous system.

With Rett we have to work harder than normal because the available pathways are fewer in number. So our hill is steeper to climb because we have make those networks and continually fire them to make sure they stay wired. Yes, it is hard but it is why the physical therapy, occupational therapy and cognitive therapy are so important. These activities build the networks and keep them active.

It is important to remember, as with any child, failure is part of learning and there cannot be success without failure. Do not be afraid of failure because that makes the final success more meaningful when it finally happens, for you and your child.

Maintenance of therapies

These walking and standing therapies are incredibly important to the state of your child’s health, but I do know that it’s not as easy as this. Some of the girls develop twisted feet, or taunt tendons which make standing and walking impossible, even in braced or harnessed environments. Sometimes scoliosis or kyphosis will bend her so she finds it impossible to stand straight or without pain. The decision on how you tackle these symptoms is yours to make as a parent.

Physiotherapy and massage are important for muscle development and integrity. When you take your child to the therapists ask questions to understand what they are doing and why. Ask if it’s something you should be doing at home too.

A steeper hillYou’ll be surprised how much the body can handle, as an ex-sportsman one of the things I used to (and still) hate was a sports massage, they are incredibly painful, torture in the hands of a master, but there was no denying how beneficial they are. Sports massages are deep muscle massages designed to release the fascia (fine sheath that covers your muscles) and encourage fresh blood to the muscles, to get rid of any toxins, like lactic acid.

I’m not saying rush out and start to torture your child (anyone who’s had a sports massage will know what I mean), I’m saying that it is surprising how hardy we can be.

Taking care of a child or person with Rett syndrome is already a full time job, I know how busy you are. I know that it’s a struggle to find the time to do all these things.

Try combine existing opportunities with these practices. Like give her time in the standing frame when she is watching TV and give her muscle massages while you’re bathing her.

If you have an Upsee, from FireFly, write a plan for walking practice. The Upsee is therapeutic training, not just an awesome way to enable your child.

Through intense physical therapy, occupational therapy, and cognitive therapy we may be able to form new networks that aid in Rett syndrome.  If any of the drug therapies correct Rett biology, i.e. form more networks, then we have an active program to be ready to fire and wire those networks.

On the subject of walking

While I was writing this blog a friend of mine, Eryn Rae, shared a story by Shane Burcaw who suffers from Spinal Muscular Atrophy and is confined to a wheelchair. In the story, a young girl asks Shane “What is the first thing you would do if you could walk?”

He replies “Skateboard”.

Then he spends some time thinking about it later and after much consideration, he says “I’d walk to my kitchen and make myself a cup of coffee.”

I think sometimes we think about Rett syndrome we think about all the amazing things it takes away, the ability to skateboard, to surf, to ski. What Shane’s post brought home to me is that Rett syndrome often steals the ability to perform the simplest tasks, not the exciting tasks.

Rett syndrome steals lifes simple moments, as well as lifes precious seconds.

We are on a quest to take them back.

To read Shane’s full story click here


The album for this blog is available here, I will continue to add more images over the weekend.

rettsyndrome.org has information about Neuro-habilitation here. http://www.rettsyndrome.org/blog/neuro-habilitation

The Upsee by FireFly is available here – http://www.fireflyfriends.com/upsee

More Reading Materials:

Soft Wired – Micheal Merzenich

The Brain That Changes Itself – Norman Doidge

The Brain’s Way of Healing – Norman Doidge

Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity – Norman Doidge

Spark: The Revolutionary New Science of Exercise and the Brain – John Ratey


Once again a massive thank you to Dr Steve Kaminsky, for always being there when Iask questions.

A worn path

Believe in me, like I believe in you.

Rett syndrome education and how it’s helping us all.

We all believe in the potential of our children; we all hope that our child will achieve something meaningful in their lifetime. We also have different ways to measure success, and sometimes it’s incredibly hard not to pressure your drive for your child’s success onto their shoulders.

Children with Rett syndrome are no different. For a long time parents have been saying “You’re under-estimating her, your understanding of her intelligence is wrong.” And at last we are slowly getting the proof that we need.

Products like the eye gaze from Tobii are not only bridging the gap in communication between Rett syndrome and the world, they are also allowing us to more accurately prove intelligence. These devices are not the only thing making the difference; it is the belief of Educationalists and Speech and Language Therapists like Susan Norwell and Sally-Ann Garrett that are pushing the boundaries of our perception. As our learning and teaching techniques get better, it drives change in the base. The acceptance of that change is sometimes slower than anticipated or hoped, and we are left dealing with the legacy of old experience and beliefs.

Steve Kaminsky believes that we can’t measure the intelligence of people with Rett syndrome right now, because we haven’t developed a method to do it properly. So right now, anything anyone is telling you is based on limited knowledge and even more limited techniques.

This created a problem for any of the older parents and girls, who’ve not only had to fight the symptoms of Rett syndrome, but have also had to deal with the lack of faith in her intelligence.

The fact is, the more we get to crack the prison of Rett syndrome, the more ability we discover. We’ve also learned recently that Rett syndrome doesn’t stop people progressing, and that they keep learning after regression has passed. Focus on what we are learning, not on what we used to know.

This is something the internet can change, and not just the internet, organisations too. Which is why I want to talk about Rett Education UK and why it’s so important to our future as a community.

Education drives change; it drives change in belief and understanding. It creates new understanding, changes perception and sets new expectations. As a community, we fight to change the perception of Rett syndrome on a daily basis, but great education enables group change, and massive shifts in thinking.

Part of the problem we have in Rett syndrome right now is awareness based.

This is not just the awareness in general of Rett syndrome, but more importantly the conservative and stagnant knowledge built on old information from before a time when we could access just a little bit of what people with Rett syndrome are capable of.

Not only are we educating the world about Rett syndrome, but we are re-educating the people who should know.

I don’t blame these people for not having the latest information, because really the onus should actually be on us to change this. Rett Education UK is doing that; they are focussing on change at a professional and family level.

Let’s face it, very few people can access all the latest and greatest stuff out there. Staying on top of Rett syndrome is a full time job, so when an organisation like this comes forward and shares knowledge for “everyone”, then this is a good thing. Personally, I can’t thank them enough for it.

At a time when our professional pool is shrinking, we need to be taking the best possible care of the people who can help us.We need to be getting them the most current and the best information we can, to make sure our girls are getting the best possible treatment all the time.

The feedback I’ve had from the Birmingham Rett Education Event last year was incredibly positive and I’m thankful that an organisation, made up of people who are clearly passionate about this, have taken it on.

Rett Education Conference 2015

This years Rett Education conference shares the weekend with RettUK’s family weekend, the whole event is covered here, and I thoroughly recommend it.

The Rett Education conference is at the Hilton Hotel in Northampton during Friday 9th October, 9am to 5pm, with its focus on communication and education.

Tickets for the Rett Education UK day are available from their web site at a cost of £79. www.retteducation.com

Speakers include:

  • Susan Norwell – inspirational and informative presentations on education and communication topics.
  • Dave Hewitt – importance of intensive interaction as a communication strategy
  • Hector Minto and Kim Elliot – will be explaining many aspects of eye gaze technology and describing its benefits
  • Sally Chan – funding for eye gaze equipment.
  • Shonette Bason-Wood – is an early years (EYFS) motivator and international educational trainer and motivator.



Believe in me, like I believe in you.