HSP and footwear

Useful new products

 

… As told by community members

 

Sugru

You know how ugly HSPers’ shoes can get, with the front of the shoe ruined from toe dragging? Here is a new product that’s easy to work with and can repair the damage and give you more useful life with your shoes. The product is called SUGRU. It’s a new product written about in the Financial Times (Make and Mend  – March 30/31, 2013).

Sugru do some quirky marketing and packaging and this product will have many uses but here’s what I learned.  The product comes in packets of various sizes and colors. I ordered the deal with 3 small (5g) black foil packets of goo.

repairs to the tips
repairs to the tips

The product is easy to work with (and reminds me of Play Dough). It’s easy to shape and press into place but has only a 30 minute working time. Then it cures completely in 24 hours. It’s waterproof and temperature resistant. I thought too late to take ‘before’ photos of my ugly shoes but here’s the ‘after’ shot.

Having worn these repaired shoes on and off for about 10 days I noticed today that I kicked off or scraped off the Sugru repair patch on my ‘bad’ side. While Sugru didn’t make my shoes as good as new… it is the best and easiest to use product for this kind of shoe repair that I’ve yet come across and I will buy more and continue to repair rather than replace my scraped up shoes.

The way I ordered the product is a little expensive, but heck – buying new shoes all the time is even more expensive! In future I’ll buy a larger amount of the stuff (the 8 pack rather than the 3 pack) but it has a limited shelf life of about 6 months, longer if kept in the fridge. Buying the larger sized packet (20g rather than 5g) that holds more Sugru might work… I’ll need to think about the 30 minute work time.  I found that with one 5g packet I could repair 1 shoe. Of course that depends on the damage, size and soles of shoes.

 

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Strutz

A common symptom of HSP is having a high arched foot. A community member says she has had success with a product she saw on TV called Strutz.

Strutz is sold as a pair of slip on cushioned arch supports that can be worn with shoes, sandals and even barefooted, so it saves the cost and effort of buying inserts for every pair of shoes. Strutz can be found in various places online and also on eBay and Gumtree.

 

Family planning and HSP

One couple’s journey

 

OUR STORY, OUR JOURNEY

Chrisanthy and Kosta Kamaras

 

Kosta & Chrisanthy
Kosta & Chrisanthy

When I met Kosta I had never heard of Hereditary Spastic Paraplegia. I knew Kosta had it but we never really spoke about it.  I can only imagine what it would be like for people with Spastic Paraplegia but to support your partner who struggles with it every day is very hard.

 

Our journey together didn’t really begin until we got engaged.  I had been researching HSP but really needed a professional to explain it to me so we had an appointment with a neurologist who pointed out just how severe HSP could get.  HSP cannot be prevented, slowed or reversed, but treatments can relieve some of the symptoms and help the person manage day-to-day activities.  It wasn’t until coming out of that appointment in tears that I knew I didn’t want my child to have this problem.  Kosta always felt so strongly about not passing on this hereditary condition and we both knew there was something we had to do about it.

 

In Kosta’s case and in most cases, a child with HSP will have inherited the faulty gene from just one of their parents, a 50% chance that they get the faulty gene or the corresponding normal gene from the other parent. This is known as autosomal dominant inheritance.  We knew we needed to locate this gene if we wanted to guarantee healthy children without HSP.

 

In November of 2010 we got married and then in March 2011 Kosta and his father (who also has HSP) had an appointment with a genetic counsellor at the Wollongong Hospital. Kosta and his father later gave blood to be sent to the laboratory at Concord for testing to locate the hereditary gene.

 

We knew this would take a long time and that there were only 3 genes they had facilities to test.  We also had an appointment with the genetic counsellor who gave us our options if we found the gene and if we didn’t.

 

As time dragged on (and boy can I tell you did it ever drag!) waiting for result of the tests was agonising.  Not knowing what your future holds was tough for both of us. We would both have downtimes but would rely on one another to get the other back up especially when you get news that the first two genes tested for were not successful over a period of approximately 9 months.  We received correspondence that the last gene they could test for was going to begin testing and about a month later in December of 2011 we got a phone call from the geneticist saying they located the gene – SPG4.

 

On the IVF journey
On the IVF journey

The results were the best Christmas present we could have ever asked for.  Now to start looking at our options, well, for us, our only option really, IVF with Pre-implantation Genetic Diagnosis (PGD). We didn’t want to risk the chance of conceiving naturally and finding out that our child has the gene as the chance is 50% each time a child is conceived. We decided the chances were too high.

 

We decided to go with Dr. Greening who is an IVF doctor with Genea. From Dr. Greening we met with a nurse from Genea and then following that we met with a Scientist and Genetic Counsellor.  They each explained the IVF and PDG process as well as their individual roles.

 

We have sent away our blood samples for DNA testing in the “Work Up” Stage. At this point a probe (some kind of test) is created to identify the gene in the embryo. We are currently waiting for these results so we can get started.  Looking forward to putting all into action!

Achieving and maintaining good mental health

Part 3 of a series – Anxiety and HSP

Dr. Helga Hemberger
Dr. Helga Hemberger

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This series by clinical psychologist Dr. Helga Hemberger* explores various aspects of getting in good ‘mental condition’ when living with a debilitating neurological condition, by providing ideas and tools for managing stress, improving mood and supporting a positive outlook.

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We all know to floss and brush to keep our teeth in good shape, and what happens if we don’t … but do we know as much about ‘mental hygiene’ as we do about ‘dental hygiene’?

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Doubts and Fears

HSP and living with uncertainty go hand in hand. People with a progressive neurological condition face a reality that does not receive much attention from most until the later stages in life – the reality that everyone’s bodies and mobility deteriorate. For people with HSP, this often happens much quicker. Then there are the daily reminders When is the next trip, stumble or fall going to happen? Can I make it from the car across that grassy slope to the house? How long will this trip take… What if I have to use a toilet… Perhaps I shouldn’t go? Will I have to live somewhere else eventually? I wonder what my partner really thinks of having to help me so much? Will I finish up unable to walk at all? The difficulties living with HSP are often stressful in themselves, but adding anxiety caused by constant doubts and fears on top of that just makes things that much worse.

Feelings of fear or anxiety have evolved to help us detect and overcome a threat. So, some anxiety is essential – it can promote problem solving and even help to clarify our priorities. However anxiety can easily get to a stage where it is high enough and constant enough that it can significantly interfere with quality of life.

 

Past, Present and Future

With unrelenting fears and worries, there is little capacity for enjoyment of the present moment. Some people describe a feeling of being controlled by anxiety, or a feeling that they are being controlled by their body.

The vast majority of thoughts producing anxiety are thoughts anchored either in the past I’ll never get over what that person said to me or the future What if I end up in a wheelchair? In a condition such as HSP, future fears are natural and often realistic I wont be able to work full time in a few years, I will need more assistance but living with fear around reduced of quality of life in the future means that quality of life in the present is significantly affected. It’s like experiencing all the possible problems and traumas that may happen in the future, all at once in the present moment. This can leave a person feeling drained, down and in despair. It can also lead to more future fears If I feel this bad now, I don’t think I can imagine what’s in store for me in the years to come!

Preoccupations with the past e.g. thinking about all the things one used to be able to do, can likewise take over and reduce enjoyment in the present.

And there are things about the present moment that are worth enjoying! The taste of a good meal, the warmth of the sun, the joke told by a friend. If fearful thoughts about the past or future predominate, life just doesn’t feel good.

 

What you can do

How does one learn to detach from future fears and past preoccupations, to focus, and find enjoyment in the present moment?  Mindfulness is one technique which has been gaining increased attention and research. In Part 2 of this series  – Meditation as Medicine participants of an eight-week mindfulness meditation program experienced increased density in brain regions associated with memory, one’s sense of self, empathy, and stress response.

Mindfulness aims “To become aware of thoughts, feelings and body sensations, from moment to moment. With practice, we can increase awareness of our thoughts and distressing feelings and can learn to respond by choice, rather than react automatically. This can help us counter many of our everyday reactions such as stress, anxiety and depression because we are learning to experience life, the things we do and the things that happen to us in a more impersonal and detached way.” Cayoun and Elbourne (2008).

 

Mindfulness of Breath

One of the first basic exercises of mindfulness is mindfulness of breath. You can practice this exercise sitting up with your back relatively straight or lying down on your bed or floor. You can either close your eyes or have them half open. Keep your arms and hands anywhere they feel comfortable.

  1. Gently turn your attention to your own natural breathing. You can feel your breath in your nose, throat, chest or down in your belly.
  2. To help you to focus you can quietly say to yourself ‘in’ or ‘inbreath’ as you breathe in, and ‘out’ or ‘outbreath’ as you naturally breathe out.
  3. Almost immediately you’ll find that your mind gets caught up in thoughts, sensations, daydreams, worries, concerns and more. This is completely normal. As soon as you notice that your mind has taken your attention away from you breath, without self-criticism, judgment or doubts, simply and as kindly as you can, turn your attention back on to the breathing. Your mind may wander off thousands of times. That’s perfectly okay. No need to criticise or judge yourself for that, simply notice that’s what is happening and bring the attention back. Each time you do this, you strengthen your inner capacity for mindfulness.
  4. After 10 minutes or so you can bring the exercise to a close. Notice how you feel, then give your full attention to whatever you do next.

 

More information on Mindfulness

Mindfulness workbooks, CDs and tapes offer structured exercises in mindfulness practice. There are specific mindfulness meditations for pain, sleep and anxiety available online. There are a number of organisations and institutions offering training and practice in mindfulness. You can search for your local group online (search ‘mindfulness’ + your geographic area).

 

*Dr. Helga Hemberger is a Clinical Psychologist who provides neuropsychological assessment and therapy for people with neurological injury, illness or disease, their family and carers. Since completing her clinical training in 2006, Helga has worked mainly in neurology and rehabilitation settings including at the National Hospital for Neurology and Neurosurgery, Queen Square, London. She is registered with the Psychology Board of Australia and is a Member of the Australian Psychological Society, APS College of Clinical Psychologists and the International Neuropsychological Society. Helga has two Sydney locations – Annandale and St. Leonards.

ph: (02) 8959 9696 or helga@cognitivehealth.com.au

Horse riding therapy

Success with movement disorders

 

Horse riding therapy
Horse riding therapy

The term Hippotherapy literally means “treatment with the horse”. Specially trained physical and occupational therapists use this medical treatment for clients with movement disabilities.

 

In Hippotherapy, the horse influences the client rather than the client influencing the horse. The client is positioned on, and actively responds to, the movement of the therapy horse. The therapist directs the movement of the horse, analyses the client’s responses and adjusts the treatment accordingly.

 

The aim of the treatment session is to improve the client’s posture, balance, mobility and function. The therapist chooses different positions in which to place the client on the horse. This may include sitting forwards, backwards, lying across the horse and lying back along the horse.

 

The client is re-positioned throughout the session to achieve their specific treatment goals, but little other active movement is asked of the client as the movement stimulated by the action of the horse provides the therapeutic benefit.

 

Hippotherapy is a medical treatment that must be carried out by a Physiotherapist, an Occupational Therapist or a highly qualified coach under the supervision of the Physiotherapist or Occupational Therapist.

 

Unique characteristics of Hippotherapy

Horse and Human as one
Horse and Human as one

The horse provides a dynamic platform for treatment.  The three dimensional movement provides a unique treatment that simulates muscular development in the client.

 

The input to the client is rhythmical with three planes of movement to the pelvis rotation, backwards and forwards, and side to side.

 

The movement is symmetrical, repetitive and reciprocal.

 

Bonding between horse and client, provides a motivating environment.

 

Hippotherapy is offered for handicapped children and also for adults. Several of the facilities listed below also offer riding for the able-bodied. Facilities are always looking for volunteers and they always welcome contributions.

 

Quotes about hippotherapy:

Hippotherapy is great.  You should definitely try it.  When my son does his, his adductors loosen up in a way no amount of stretching seems to be able to do, and unlike stretching, it’s actually fun, exercise and outside!

I was watching Good Morning America today. They had a young lady on there with HSP since she was 2 years old. Now at 18 she is doing good because of horse back riding.

Our son who is 10 did the HippoTherapy for years and it really helped.

I’m 53 and have had noticeable HSP symptoms since first grade.  I’ve ridden horses all my life. I now have to work pretty hard to get my legs to spread apart while mounting, but it’s so worth the temporary pain. Actually, getting out and  loping/cantering the horse relieves a lot of the  pain.

 

RESOURCES:

Riding for the Disabled Association of Australia Limited. Their website includes contact information to provide people with a disability the opportunity to ride and enjoy all the activities connected with horse riding in every state and territory of Australia

 

Riding for the Disabled Association (NSW) website

 

Pegasus Riding for the Disabledorganisation located outside of Canberra, ACT

 

Riding Develops Abilities – with various centres in Victoria

 

Arundel Park Riding for Disabled Inc., located in Queensland

 

 

 

 

HSP and walking

Hips and ankles are key

 

Hip Abduction
Hip Abduction

This study investigated how ‘postural sway’ (a componenet of balance) is affected in people with HSP. It looked at 2 very specific components of balance – hip abduction strength and stiffness at the ankle. The study compared 20 HSPers with 18 non-HSPers.

 

They found that the HSPers had:

* higher sway in both sideways and forward/backward directions

* reduced strength at hips and ankles

* greater ankle stiffness

* and forward/backward sway was less in those whose ankles were more stiff.

 

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Possible implications for HSPers:

  1. Strengthen hip abductors to improve stability.

  2. If hip abductors are weak, take extra caution to prevent falls.

  3. Ankle stiffness was seen to reduce sway and may therefore improve stability – so don’t overstretch the ankle.

OBJECTIVE:

To determine how postural sway is affected in people with spastic paraparesis (pwSP) and the impact of different impairments.

METHODS:

In 20 pwSP and 18 matched healthy controls, standing postural sway was measured with eyes open and closed. Vibration threshold, isometric ankle and hip muscle strength and ankle stiffness with the participant at rest or pre-activating the muscle was measured.

RESULTS:

Antero-posterior (AP) and medio-lateral (ML) sway was higher in pwSP. Muscle strength was reduced and ankle stiffness increased in pwSP. Increased vibratory threshold was seen in 35% of participants. Higher total ankle stiffness (R2=0.44) was associated with lower AP sway with eyes open whilst hip abductor weakness was associated with increased ML sway with eyes open (R2=0.36) or closed (R2=0.47) or AP sway with the eyes closed (R2=0.48).

CONCLUSIONS:

The degree of postural sway was related to muscle paresis of the hip abductors particularly in the ML direction and under conditions of reduced sensory input. People with higher total ankle stiffness have less AP sway suggesting that this may help to stabilise the body.

 

SOURCE:  Gait Posture. 2013 Apr 12. pii: S0966-6362(13)00137-9. doi: 10.1016/j.gaitpost.2013.03.001. [Epub ahead of print]

Balance dysfunction in hereditary and spontaneous spastic paraparesis.

Marsden J, Stevenson V.

School of Health Professions, Peninsula Allied Health Centre, University of Plymouth, Derriford Road, Plymouth PL6 8BH, United Kingdom.

Crown Copyright © 2013. Published by Elsevier B.V. All rights reserved.

 

Ankle Foot Orthoses

Review and resources

 

Ankle Foot Orthoses (AFOs) can help significantly with mobility for many with HSP.  Following is a look at what’s available.

 

Definitions

Orthosis (pl.Orthoses): An externally applied device used to modify the structural or functional characteristics of the neuro- muscular-skeletal systems. Orthoses may be Prefabricated, Customised or Custom Made.  Orthoses are made for different body uses, not just ankle-foot, but knee, hip and upper body as well.

Orthotist (pron: Ortho-tist): An allied health professional who is clinically responsible for the assessment, design, manufacture and provision of all types of Orthoses.

 

Function of an Orthosis

  1. Immobilisation
  2. Restriction of Motion (ROM)
  3. Enhance Biomechanics
  4. Force Re-distribution.

The common use for many HSPers is to aid in toe lifting, swing through and better aligned foot placement.  There are lots of different AFOs available these days.  (Electrically powered AFOs even exist for conditions different than HSP). Over time there has been an important advance in the super strong and lightweight materials used.  Size is important because of the need to fit a portion of the AFO into the wearer’s shoe.

AFOs can be custom made or bought off the shelf (or off the website) at a wide range of prices ($37.30-$690 in my small sample) but while many of the sites look like you can self-order AFOs, I’ve been told by some of the providers below, “We do not sell this item direct to the public, it is to be recommended to the patient by an Orthotist” or “We do allow members of public to order AFOs from our website without professional consultation.  However, we do recommend they seek health professional advice before doing so”.  That’s not surprising.  With the different choices in materials, weight and support structure, its not a simple thing especially since HSPers can have such different gait characteristics and needs.

It is recommended that you get the advice of a professional who understands your specific needs.  In the end some HSPers find their AFOs most helpful, others, less so.  Driving while wearing AFOs can be another concern.

 

Resources

Novita Children’s Services has an informational fact sheet on AFOs.

 

The Royal Children’s Hospital Melbourne website article on AFOs and casting.

 

Orthokids – Children’s Orthotic Specialists provides AFOs (has 2 locations in Victoria)

 

Korthotics can do custom-made, static and dynamic AFOs (They are in NSW)

 

Australian Orthotic Technologies  Here you can see their: AFO Leafspring, AFO Dynamic, AFO Light and AFO Foot Up. They are in Victoria.

 

Access Health – Physical Therapy Supplies (in Victoria)

Their website says: The General public are welcome to call us to make an appointment to come and try on bracing and view other products. Practitioners can refer patient direct to us for fitting braces and viewing products. Please indicate to the patient which type of brace/product they require. Here you can see their: Ossur Spring Leaf AFO, Ossur AFO Dynamic, Ossur AFO Lite, Oapl AFO Spring Leaf Polyprop, AFB Polypropylene AFO and Supralite Polypropylene AFO.

 

Australian Physiotherapy Equipment APE (in WA)

 

BodyHeal https://www.bodyheal.com.au/

Offers the Foot Up and the Ossur AFO Spring Leaf

Foot up brace https://www.bodyheal.com.au/products/ossur-drop-foot-foot-up-brace

Full range of AFOs https://www.bodyheal.com.au/collections/ankle-support-braces

 

CW Club Warehouse has a pre-formed Foot Orthosis

 

Whiteley Allcare carries what they call the AFO-Delux-Allcare (lowest price in my research $37.30) with distribution centers in Sydney and Perth.

 

Orthotic Technical Services is a practice based in Victoria. OTS is owned and run by current practising clinicians, including physiotherapists, orthotists and podiatrists and offer several different AFOs.

 

OPC Health offers a Professional Orthotic service across a number of clinics in Metropolitan Melbourne and rural Victoria.  They offer 4 different AFOs including the more unusual Matrix Split Toe, Matrix Max and Matrix Curve.  Descriptions of the Matrix models include: front mounted shell, split toe (acting as a natural spring) and energy storing foot plates.

 

Here is the Noodle AFO that Tim Xiros, HSPer and Foundation Committee Member liked best of the AFOs he tried.  Read his article Neurophysiotherapy a good investment.

 

SmartKnit Seamless AFO and KAFO Socks. They offer brace liners for more comfortable AFO wear.

 

Here are even more types of AFO which may or may not be available in Australia at the moment and of course that’s subject to change.

http://www.allardusa.com/frames/prodframes.html

http://www.phatbraces.com/

http://www.campscandinavia.se/pdf/toeleafeng.pdf

http://www.insightful-products.com/index.html

http://www.spsco.com/products/new-releases/04-01-08a.asp

http://www.ordesignslv.com/helios.php

http://www.alimed.com/dynapro-elite-afo.html

http://www.dafo.com/

 

Reference:

http://www.health.qld.gov.au/mass/docs/resources/MGF/orthosesrdbn.pdf

 

 

Next generation gene testing

Effective in detecting complicated HSP

 

Whole-exome genetic sequencing is found to be a cost-effective diagnostic tool for complicated HSP.

 

Hereditary spastic paraplegias constitute a heterogeneous group of neurodegenerative diseases encompassing pure and complicated forms, for which at least 52 loci and 31 causative genes have been identified. Although mutations in the SPAST gene explain approximately 40% of the pure autosomal dominant forms, molecular diagnosis can be challenging for the sporadic and recessive forms, which are often complicated and clinically overlap with a broad number of movement disorders.

The validity of exome sequencing as a routine diagnostic approach in the movement disorder clinic needs to be assessed. The main goal of this study was to explore the usefulness of an exome analysis for the diagnosis of a complicated form of spastic paraplegia.

Whole-exome sequencing was performed in two Spanish siblings with a neurodegenerative syndrome including upper and lower motor neuron, ocular and cerebellar signs. Exome sequencing revealed that both patients carry a novel homozygous nonsense mutation in exon 15 of the SPG11 gene (c.2678G>A; p.W893X), which was not found in 584 Spanish control chromosomes.

After many years of follow-up and multiple time-consuming genetic testing, we were able to diagnose these patients by making use of whole-exome sequencing, showing that this is a cost-efficient diagnostic tool for the movement disorder specialist.

 

SOURCE:  Clin Genet. 2013 Feb 25. doi: 10.1111/cge.12133. [Epub ahead of print]  © 2013 John Wiley & Sons A/S. Published by Blackwell Publishing Ltd.  PMID: 23438842 [PubMed – as supplied by publisher]

Exome sequencing is a useful diagnostic tool for complicated forms of hereditary spastic paraplegia.

Bettencourt C, López-Sendón J, García-Caldentey J, Rizzu P, Bakker I, Shomroni O, Quintáns B, Dávila J, Bevova M, Sobrido MJ, Heutink P, de Yébenes J.

Institute for Molecular and Cell Biology (IBMC), University of Porto, Porto, Portugal; Center of Research in Natural Resources (CIRN) and Department of Biology, University of the Azores, Ponta Delgada, Portugal.

 

Achieving and maintaining good mental health

Part 2 of a series – Meditation as Medicine

 

Scientific evidence from well-designed research studies shows that meditation can increase attention span, sharpen focus, improve memory, and dull the perception of pain. What… say that again… meditation can help with pain!

 

In the spring of 2000, Cassandra Metzger was working as an attorney at the Public Broadcasting Service headquarters in Washington, D.C., attending night classes for a master’s degree at Johns Hopkins University, and training for her first 10K race. At 34 years of age, her life was full and fast. But during that spring and into the summer, she became unable to get out of bed because of unexplained pain and fatigue. By the fall, she had to stop working.

 

A year later, Metzger was diagnosed with fibromyalgia, a disorder of the central nervous system that seems to distort the body’s normal response to pain. Some researchers believe fibromyalgia causes pain signals to misfire. Metzger was prescribed painkillers, muscle relaxers, sleep drugs, mood stabilizers, and other medications to manage her pain, insomnia, fatigue, and resulting depression. None of these worked very well. Then she discovered meditation, an ancient practice of focused attention designed to silence the brain’s default thought patterns and increase awareness of the present moment.

 

“Meditation saved me from despair more than once,” Metzger says. “During episodes of acute illness, I was saved by knowing that the experience of pain was just one moment in time—maybe an excruciating moment, maybe a long moment, but still a moment. I learned this by meditating. The concept of impermanence—that everything passes away—may seem scary, but for someone who is vomiting from a pain medication on which she pinned every last hope, impermanence is a beacon.”

 

Meditation: The Basics

Meditation has aptly been described as “thinking about not thinking,” ideally for 20 minutes or more every day. During this uninterrupted time, you calmly become aware of your thoughts and distance yourself from those thoughts. It’s normal for your mind to wander. When that happens, as it inevitably will, gently detach from the distracting thoughts and bring your attention back to your breathing, a word, prayer, or an object.

 

Meditation is not completely risk-free. It can unearth fear, trauma, or painful memories for some people, particularly those who have psychotic disorders, severe depression, or post-traumatic stress disorder. “These individuals should only meditate under the supervision of a mental health provider or experienced meditation teacher,” says Katherine MacLean, Ph.D., of the Johns Hopkins School of Medicine.

 

While there are many different types of meditation, here are a few of the most common:

 

ATTENTION MEDITATION: Sit on a cushion or chair with your back straight and your hands in your lap. Then concentrate your mind on a focal point, such as your breath, an internal image, or a burning candle. If your mind starts to wander, gently bring your attention back to the focus of meditation. Over time, this practice will train the mind to watch out for distractions, “let go” of them once they arise, and refocus when necessary.

 

MINDFULNESS MEDITATION: The aim in this form of meditation, which has origins in Buddhism, is to monitor various experiences of your mind—thoughts, feelings, perceptions, and sensations—and simply observe them as they arise and pass rather than trying to interact with them or change them. The idea is to maintain a detached awareness, without judgment, to become more aware and in touch with your body, your life, and your surroundings.

 

PASSAGE MEDITATION: Passage meditation involves reciting a short passage (prayer, mantra, or short poem) silently to yourself over and over and over again. The meaning of the words is not the most important element—most importantly, the words are a focal point for attention. “Passage meditation is great for beginners since it’s hard to maintain distracting thoughts when you have a verbal anchor,” says Dr. MacLean.

 

BENEVOLENT MEDITATION: Benevolent meditation generates beneficial states of mind for yourself and others. A common approach is to repeat: “May I be happy. May I be free of suffering. May I be healthy. May I live with ease.” Then repeat the same passage focusing your attention on someone you love, then on a stranger, then on an enemy, and then on all creatures. “People with chronic illnesses often experience a lot of self-loathing and self-blame,” says David Vago, Ph.D., instructor at Harvard Medical School and associate psychologist at Brigham and Women’s Hospital in Boston, MA. “If you can transform those negative emotions toward yourself into compassion and love, it not only benefits you, it also benefits everyone around you.”

 

NOW AND ZEN

Metzger’s experience isn’t unique. Millions of people all over the world claim that meditation transformed their lives. But for centuries, only anecdotal reports about these benefits were available as proof. Now, scientific evidence from well-designed studies—including images of the brain—is emerging. Some of these studies suggest that meditating for as little as 20 minutes daily can affect the function and structure of the brain in a positive way. Researchers have found that meditation increases attention span, sharpens focus, improves memory, and dulls the perception of pain.

 

“Physical changes in brain structure convince most skeptics that the benefits of meditation go beyond the placebo effect,” says neurologist Alexander Mauskop, M.D., director of the New York Headache Center, associate professor of neurology at the State University of New York Downstate Medical Center, Fellow of the American Academy of Neurology, and author of “Nonmedication, Alternative, and Complementary Treatments for Migraine,” upcoming in the AAN’s journal Continuum. The placebo effect is the benefit that a person derives from his or her positive expectations of a treatment rather than from the treatment itself.

 

During the past 20 years, scientists have shown great interest in studying how and why meditation works. In 1998, a search of the medical literature using the key words “mindfulness meditation” would bring up only 11 scientific studies, compared to more than 560 today, according to Dr. Vago.

 

YOUR BRAIN ON MEDITATION

This surge in research is a byproduct of neurologists’ discovery that meditation produces measurable changes in the brain, say experts. For example, in a 2011 study published in the medical journal Psychiatry Research: Neuroimaging, researchers found that people who participated in an eight-week mindfulness meditation program experienced increased density in brain regions associated with memory, one’s sense of self, empathy, and stress response.

 

Previous studies uncovered a thickening of both gray matter (the parts of the brain involved with thoughts and emotions) and white matter (the parts of the brain that connect different gray matter regions) among meditators compared to people who don’t meditate regularly. While scientists aren’t clear what these changes mean, they suspect that thickening gray and white matter is associated with the ability to process information more efficiently.

 

Meditation may even buffer the aging brain. “When researchers compared the brains of normal aging adults and same-age serious meditators, they found that the brains of the meditators did not shrink. What we accept as a normal process—the shrinking of the brain as you get older—may not be necessarily normal,” says Dr. Mauskop.

 

INNOVATIVE THERAPIES

Meditation researchers have investigated how meditation impacts what they call the brain’s default mode network (DMN), which includes the self-talk that constantly chatters in the background as you go about your day. According to Katherine MacLean, Ph.D., a researcher in the psychiatry and behavioral sciences department at Johns Hopkins School of Medicine in Baltimore, MD, the brain regions involved in the DMN include the medial prefrontal cortex (front middle part of the brain) and the posterior cingulate cortex (back middle part of the brain).

 

For most of us, the DMN tends to focus on the past or the future instead of the present moment. For example, we may be vaguely aware of thoughts looping through our consciousness, such as “Why did I just say something so stupid?” or “I have so much work to do this week” or “I can’t remember when I wasn’t in so much pain, and it will probably never stop.”

 

Meditation will better equip us to be less at the mercy of our DMN. A recent functional magnetic resonance imaging (fMRI) study revealed shorter neural responses in regions of the DMN of meditators compared to non-meditators, suggesting that meditating on a regular basis enhances the ability to limit negative self-talk such as dwelling on past mistakes or imagining problems in the future, allowing instead for meditators to stay in the now.

 

Researchers suspect that less DMN activity enables the brain to rest and remap itself. “Shutting your brain off for portions of the day—for example, through meditation—may be a very healthy activity for your brain over the long term,” says Dr. Mauskop.

 

PAIN AND THE MEDITATING BRAIN

People with a chronic, painful illness such as fibromyalgia may feel alienated from or betrayed by their own bodies. They may also feel estranged from family and friends as a result of their illness. In Metzger’s case, meditation helped her stay in touch with her body and her loved ones.

 

“I learned to continue to inhabit my body rather than try to flee from it,” she says. “And meditation helped my relationships in terms of accepting what is and letting go of my expectations of other people.” Metzger even had experiences where her pain vanished during a meditation session. “It didn’t happen all the time, but the fact that it happened at all was astonishing to me, especially after nine months of unsuccessfully trying to relieve my pain with drugs,” she adds.

 

Several studies confirm that people who meditate regularly experience less pain than those who don’t meditate. Fadel Zeidan, Ph.D., a researcher at Wake Forest School of Medicine in Winston-Salem, NC, reported in a study in the Journal of Neuroscience in 2011 that newbie meditators showed a 40-percent reduction in pain intensity and a 57-percent reduction in pain unpleasantness after just a few short sessions of mindfulness meditation training. Although the researchers didn’t directly test for this, meditation produced a greater pain reduction than morphine, which typically reduces pain by about 25 percent.

 

In another study, Dr. Zeidan and his colleagues found that 20-minute meditation sessions for just three days helped a small group of volunteers significantly reduce their sensitivity to mild electric shocks—even when they weren’t meditating at the moment of shock. “Mindfulness meditation alters the way people experience pain,” says Dr. Zeidan. “It teaches you to look at each moment and with appreciation, even when that moment includes pain.”

 

Researchers say that meditators still sense discomfort, but they have discovered how to effectively manage their emotional response to pain. Indeed, meditators who experience distress while in a meditative state show greater activity in areas related to body awareness, such as the anterior insula and somatosensory cortex. “They’re actually more in tune with the sensation of pain, but they don’t have their usual emotional reaction to it,” explains Dr. MacLean.

 

Instead, meditators learn to recognize emotions such as pain, fear, or anger, without giving into the pessimistic thoughts or chain of behaviors that habitually follow. Non-meditators, on the other hand, tend to get stuck focusing on the negative emotions, as Dr. Vago has found in his research. People have a tendency to dwell on thoughts about pain because they experience chronic pain, usually every day. “When they see a word like ‘throbbing’ or ‘pounding’ show up on a computer screen, they detect it quickly and avoid it,” says Dr. Vago of his research. “If the word is on the screen long enough to process it on a conscious level, they begin to ruminate,” he adds. On the plus side, Dr. Vago’s team found that after eight weeks of meditation, those tendencies were gone.

 

“When you’re dealing with acute pain, thinking about how horrible the future will be can be even more powerful than the pain itself,” says Dr. Vago. “The pain network turns on in anticipation of discomfort, and only when the pain comes does it finally turn off. Actually experiencing the pain can almost feel like a release.”

 

Rather than engaging the fight-or-flight response of the sympathetic nervous system in anticipation of pain and trying to escape it, meditators learn to accept the sensation of pain. Once they do, pain no longer grips their minds. It becomes another experience that comes and goes.

“Even if the discomfort doesn’t go away completely, meditation opens a gap between pain and me,” says Metzger. “Instead of the pain acting like a vise that grips my spinal cord, it will kind of float in my body. And often, that’s enough of a relief.”

 

MEDITATING MECHANICS

The great thing about meditation is anyone can do it, anywhere. It doesn’t require special equipment, a gym membership, or an advanced degree. Practitioners simply focus on a sound, object, mantra, or their breath. The point is just to shut everything else out.

“Meditation is the simplest technique in the world,” says Dr. Mauskop, “but that doesn’t mean it’s easy to do.” In fact, staying with a painful sensation or experience can be mind-numbingly difficult (pun intended). Fortunately, you don’t need the discipline of a Tibetan monk to experience the benefits. The key, Dr. Mauskop says, is to approach the practice of meditation with curiosity and without judgment, accepting what is true in that moment—including the fact that meditation can be difficult. Instead of trying to change your experience—“Why can’t I meditate better and not feel in pain?”—you simply become aware of your desire to change it.

 

According to Metzger, each day is different, and you can’t always replicate a positive experience. “There are times when I’m in such agony that I can’t meditate on my own,” she says. “During those times, I don’t worry about sitting in a particular position. I just lie on my bed and put on a CD with a guided meditation—one specifically about pain—and that usually helps.”

 

The goal, say experts, is to focus your attention. “You don’t even have to be in a sitting position to meditate,” says Dr. Vago. “You can be standing in the grocery line. If you’re getting frustrated, just move your awareness to your breath. It’s that simple.” He also suggests taking three breaths in a sitting position before getting out of bed. “It’s amazing how something that subtle can change the experience through your day.”

While research hasn’t yet pinpointed how much time is required to achieve benefits, experts say practicing even 5 to 10 minutes daily can help. The novices in Dr. Zeidan’s studies reported less pain with 20-minute practices. In a second experiment, he found that similarly brief sessions improve cognitive performance on tasks that demand continuous

attention.

 

“It’s hard to imagine the structure of the brain could shift after a little more than an hour of meditation training over three days,” says Dr. MacLean. “But on a psychological level, simply being able to take a different perspective on pain has all sorts of immediate benefits.”

Perspective can have powerful effects. Viewing illness as a battle to be won, for example, may set some people up for failure, particularly when a chronic illness has such a strong presence that it can’t be defeated.

 

“I learned in meditation to breath in the physical sensation of pain and accept it in the most profound way, which depleted some of its power and hold. Without the practice of meditation I never could have done that. It never would have even occurred to me to try.”

 

After 12 years, meditating can still be challenging and counterintuitive for Metzger. “I have learned not to fight my experience, but to accept it and breathe into my pain,” she says. “During long hauls of illness—weeks of being in bed, alone, isolated, falling into despair—meditation creates a space for hope to creep in.” And that can make all the difference.

 

SOURCE: Neurology Now: August-september 2012 – Volume 8 – Issue 4 – p 30–33

doi: 10.1097/01.NNN.0000418730.21607.7d

 

Meditation as Medicine

 

Paturel, Amy M.S., M.P.H.

 

©2012 American Academy of Neurology

 

Neurophysiotherapy a good investment

Significant benefits for HSP

 

HSPer, Foundation committee member and Fundraising Manager, Tim Xiros, talks about going to a neuro physiotherapist and how it has helped him.

 

Tim working with a neurophysio
Tim working with a neurophysio

After attending the HSP Workshop in Adelaide in November 2011 and participating in the “Managing and Maintaining Mobility” presentation given by neurophysiotherapist Tamina Levy, on my return to Sydney I decided to pursue neurophysiotherapy as treatment for my HSP. I was a little sceptical as I had seen numerous physios in the past who were not familiar with HSP, so maintaining a positive belief that this treatment would be of benefit to me was my first challenge.

 

The next step was to find a neurophysio in Sydney. I was working in Chatswood at the time so I wanted to find a practice that was close to my office. After running a search on the Australian Physiotherapists Association’s website at www.physiotherapy.asn.au for physios close to Chatswood who specialise in neurology treatment, I found Melissa McConaghy at the Advance Rehab Centre in St.Leonards (www.archealth.com.au) and booked an appointment.

 

At my first appointment we had a chat about my condition and what was it that I was hoping to achieve from the consultation. I explained some of the symptoms that I had such as the gait, muscle stiffness and weakness and that my long term objective was to improve my walking. At the time I was struggling to walk 200 metres without resting so any improvement to this distance would have been worthwhile.

 

Melissa then examined me, instructing me to do various exercises whilst I was in both standing and sitting positions. Using markers along the length of the room, I then walked up and down whilst Melissa assisted by other members of her team, identified my major areas of weakness. To be sure, when I stopped walking she asked me to do some more exercises that would highlight to her the exact symptoms that cause the gait and spasticity to occur. I then sat down again with Melissa and she explained to me the findings from her initial assessment (using medical terms and plain English):

 

  • Weakness of hip flexors bilaterally – The hip flexor muscles are located in the front of your leg, above the thigh muscles, and they act to bring your leg up towards your trunk.
  • Rectus femoris spasticity bilaterally – The rectus femoris is situated in the middle of the front of the thigh. Rectus femoris spasticity is one of the main causes of reduced knee flexion in swing phase, commonly known as stiff knee gait.
  • Hamstring spasticity bilaterally – Hamstring tightness and stiffness makes it difficult to move your leg backward and bend your heel back to your buttocks. Stiffness in the hamstrings can also prevent normal range of motion in the hip or the knee joints.
  • Calf spasticity bilaterally – In HSP, calf spasticity is usually the cause for symptoms such as foot drop, high arches and hammer toes.

 

Seeing the therapist is one thing, but the lasting benefits come from the customised exercise program that she gave me to do regularly by myself. Make no mistake, this is the absolute key to success. The exercises were focused on lifting my knees to build strength in my hip flexors, stretching my hamstrings and raising my calves.

 

At my next appointment, Melissa reviewed my ability to complete the exercises given to me the week earlier. We both noticed significant improvement in not only the number of sets and repetitions for each exercise, but also in flexibility and range of movement. From these results, this convinced me to commit to more sessions. After another hour of intense exercises, Melissa took video footage of my walking from both side and front angles.

 

Each subsequent session got harder and more difficult. The sessions were more demanding and challenged me not only physically but also mentally. In addition to the hip flexor, hamstring and calf exercises, we worked on other exercises including leg presses, cycling, squats, lunges, stepping up/over and sitting techniques. In between sessions I was doing my own personal training and continuing the prescribed program of exercises at the gym.

 

After week 4, Melissa introduced me to orthotics. She arranged for Darren the orthotist to see me, and he presented me with a range of products to try that are specifically designed to prevent foot drop and dragging of the feet. After trying all products including the electronic device WalkAide, I found the Noodle AFO to personally be of most benefit. This type of AFO is constructed using lightweight carbon fibre material and is designed to improve gait efficiency. Darren measured my foot and ordered the AFO to my measurements, but just for my left leg as both legs would have been too much of an adjustment.

 

By week 6, I was feeling less stiffness and more strength in my legs than I had experienced in a while. I was training hard in the gym and walking much longer distances. The walking distance between home and railway station and railway station to the office was far easier to complete and required less cardio effort. Even my family and friends were noticing differences.

 

The next week my new AFO had arrived and I couldn’t wait to try it on! It fitted with ease and the difference it made was immediate. I felt less weight on my legs, more balanced and had improved gait efficiency due to better feet clearance off the ground. At the end of this session, Darren brought out the video again and he filmed me with and without the AFO. He also timed me walking over set distances, with and without the AFO, and my times were close to 20% faster with the AFO on!

 

I finished the program after 8 weeks with a review from Melissa of my achievements to date. The program helped to maintain movement in my hip flexors, reduce spasticity in my hamstrings and calves and improve my gait. The biggest achievement for me was that I could manage to walk over 500 metres with relative ease.

 

Today, close to 12 months since finishing the program, I still maintain the exercise plan by training 4 to 5 times a week at the gym. I doubt very much that I would have been able to travel to Europe for 5 months last year had it not been for the program.

 

As a progressive condition, from my experience, it is possible to stall the rate of progression and achieve a longer period of quality mobility, and keeping active helps get me there.

 

I found visiting the neurophysio to be an investment in my long term mobility and formed part of my personal HSP management plan. My program works for me because it is custom designed for me. So it is essential to be assessed and work with a neuro physiotherapist to the point where the program is delivering the desired results with no adverse consequences. So do yourself a favour and see a neuro physiotherapist.

I wish for all HSPers to share similar success stories!

 

Thanks for reading my story.

Tim Xiros

 

Get the most out of neurologist appointment

Tips and advice

 

How frustrating is it to realize that you forgot that important question you should have asked… while on your way home from seeing the neurologist. I think that happens to many of us. We’ll surely all go for more doctors’ visits and have less time with the doctor than we would like.

 

But there is a useful article in the December 2012/January 2013 issue of NeurologyNow titled Be Prepared!  How to make the most of office time with your neurologist.  Here are some highlights or view the entire article.

 

Most helpful is about what to bring for your doctor. Very very important is:

 

  • List of top three things you want to discuss. We’re told to order it in terms of priority with the most urgent first.

 

  • Bringing a Symptom Diary is suggested.

 

  • And I love this one, Bringing A Friend or Relative. It can be easy to get flustered when the doctor is examining you and another set of eyes and ears with a pen and paper can make clear the doctor’s orders and concerns.

 

It’s also suggested that we bring:

  • Test Results
  • Medication List
  • Previous Medical Records
  • Insurance Information and
  • List of Other Health Care Providers.

 

One further suggestion, recently an HSPer on the SPF chatline talked about how she kept all her important information in a special folder in a specific place, to make medical visits as easy and effective as possible.  Be prepared!

 

Your involvement in your own care will help ensure that all your doctors have access to your health information and help them provide you with the best care possible.