Author: SSAdmin

Improved walking and balance

 

Trekking poles such as used by hikers may help HSPers significantly with their walking and balance.

 

Here is one HSPer’s experience:

I have been using my trekking pole since I first started showing signs of balance issues on trails about 7 yrs. ago and have moved to using it all the time last year. One of my Doctors said he loves the trekking poles because people like me who are used to them for the outdoors would use them before they would use a more traditional cane.  I love mine and would not give it up for a more traditional cane unless I absolutely have to.

 

There can be several advantages to using trekking poles versus walking unaided. http://www.helinox.com.au/pages/why-use-trekking-poles-at-all.asp

 

Find a sports shop that stocks them and give them a try… see how they feel. Hikers choose to use one or two trekking poles at a time. They take some getting used to – here is a guide on how to use them.

http://www.helinox.com.au/pages/how-to-use-trekking-poles.asp

 

Finally, if you are thinking of buying, make sure you get the right poles for yourself. Here is an article on how to make the right choice.

http://ourhikingblog.com.au/2011/03/how-to-choose-the- best-walking-poles.html

 

Handy devices for HSPers

Independent Living Centres Australia are in the business of helping make everyday living easier for those with disabilities. Assistive technologies help people to maximise their independence and their ability to manage everyday tasks whether in the home, workplace, or out in the community. Independent Living Centres’ website lets you search for products by state and category. You’ll find assistive gear you never knew existed. In this edition, we’ll show you some of the Transportation related products that are available.

Car Caddie – Portable Clip-on Handle

 

A portable handle that clips onto the frame of the car door, allowing the user to move from sitting to standing by pulling themselves up. Costs around $20.

 

 

 

 

 

Handybar

 

A slip resistant handlethat can be temporarily fixed into the door striker of a vehicle, to provide a support bar that assists people when getting in and out of the car. Costs around $80.

 

 

 

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Swivel Seat Pads

Immedia Easy Turn Swivel Cushion

A lightweight and portable seat swivel device with a slip resistant base and cotton or velour top. It is designed to enable a user to pivot around 180 degrees. Use it in the car to make it easier to swing your legs in once you sit down. The seat swivel device is suitable for use in a car or bed.

 

 

 

 

Pelican Handi Soft Turn Pad

A soft transfer disc used to assist with sitting transfers on a chair, car seat or bed. This turntable, swivel seat style of transfer aid enables independent and assisted seated pivot transfers.  Priced from $95.

 

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Leg Lifters

 

A reinforced nylon webbing strap with a rigid loop and stem at one end and a soft hand loop at the other end, with lifting loops positioned along stem. It is designed to hook over a foot to assist in lifting it. Available in two models for one foot or two feet.

 

 

 

 

 

 

 

 

 

Two examples of courage and dignity

 

Blog worth reading

Here’s a blog by a woman with Primarily Lateral Sclerosis (PLS).

PLS is not HSP, but is a ‘cousin’, having some things in common such as progressive weakness and spasticity of muscles and typically, tripping or difficulty walking. The writer here speaks honestly and eloquently about her disability and facing a future that will include further degeneration. There is a valuable message for us all in the dignity she displays.

See: http://primarylateralsclerosis.org/

 

4 Olympic Golds and 4 world records

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David Larson of California isn’t a household name, but he is a remarkable athlete nonetheless, despite having HSP. It’s why Larson competed in the Paralympics, racing in his wheelchair against the top disabled athletes in the world. He has compiled an enviable record in four Olympics, from 1988 to 2000, including four world records and several gold medals. He was nominated for inclusion in the Paralympics category of the U.S. Olympic Hall of Fame.

 

Larson, 42, used to sell stocks and bonds and life insurance before he decided to make his own investment in doing something that was personally satisfying. Today he is an instructional assistant at Tony Tobin Elementary School in Temecula, California, working with children with varying degrees of autism.

“I modify their work so it’s tailored to their needs,” he said. “I reach each and every one of them. You know, I’m the only male teacher, and it’s great for them to see someone different from them. I try to break barriers and show positive example.”

Larson was 15 when his family left its home in Michigan for Carlsbad, California. “My parents didn’t like cold weather,” he said.

He was misdiagnosed with cerebral palsy, and used crutches until he was 5. Four surgeries to improve his flexibility resulted in “mild success,” he said. He was 30 when he was finally diagnosed with HSP.

“When I was 11, my physiotherapist suggested that I play some sports,” he said. “I loved to compete, so I took up track, and in the beginning I was running on my legs. Years later it would lead to entering the Paralympics.”

The competition has provided Larson with plenty of special moments, but two stand out.

“In 1992, I came home with four gold medals and world records. Then in 1996 my fiancée (now his wife, Kristin) saw me compete and perform at my highest level. It was phenomenal to share that with her in Atlanta.”

 

Larson and his wife, who is principal of Gardner Middle School in Temecula, have two sons, David, 14, and Ryan, 11. Both have the same condition as their father. “The boys use wheelchairs for longer distance and at school, but not in classrooms.”

While he retired from international competition in 2000, Larson still races in local half marathons. He’s also working toward a teaching credential in special education.

“Teaching is more rewarding than selling stocks,” he said.

SOURCE:  The Press-Enterprise

BY Peter Fischetti, Correspondent

 

This is the second of a two-part series – Managing bowel incontinence. Read the first one on Managing urinary incontinence.

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The Problem

It is not uncommon for HSPers to have trouble with bowel function. Everyone’s a bit embarrassed about their poo, but faeces are normally about 75 per cent water.

http://www.wellbeing.com.au/article/features/body-health/Special-Report—Bowel-Health_700

Problems of bowel irregularity (faecal incontinence) include constipation and loss of control. Constipation can also lead to anal fissures and haemorrhoids.

The Causes

These problems can come from lack of normal nerve and muscle function in the bowel, progressive lower extremity weakness and spasticity, inadequate activity or exercise or immobility, inadequate water intake, inadequate fibre in diet, increased body weight, stress, medicines and depression. Too, constipation is more common in older people. This is due to a number of factors, including reduced intestinal muscle contractions and reliance on regular medications.

Lifestyle Options

With our physical conditions and lifestyle issues as HSPers, we need to be very particular – more so than the average person – about what and how much we eat and drink. The following lifestyle options can be helpful to improve bowel control:

• Eat more fruits, vegetables and fibre.
• Drink more water.
• Get some exercise.
• Toilet routine
• Pelvic floor exercises

Eat more fruits, vegetables and fibre

Dietary fibre http://en.wikipedia.org/wiki/Dietary_fibre is found in food from plants. There are two broad types of fibre – soluble and insoluble.

Soluble fibre helps to soften the faeces. Good sources of soluble fibre include legumes (beans, peas, lentils), oat bran, fruits and vegetables. It helps:

• lower total and LDL (bad) cholesterol
• regulate blood sugar
• reduce risk of cardiovascular disease, diabetes and onset for some types of cancer.

Insoluble fibre absorbs water as it moves through the digestive system, adding bulk to the faeces, helping it to move more quickly through the bowel. Good sources of insoluble fibre are wheat bran, wholegrain breads and cereals. Because insoluble fibre absorbs water, increasing intake of this fibre without drinking enough water can contribute to constipation!!!

The intake of foods such as milk, cheese, white rice, white flour and red meat should be restricted because they tend to contribute to constipation.

Fibre supplements may be helpful if a person is reluctant or unable to include more wholegrain foods, fresh fruits or vegetables in their daily diet. Psyllium husk is the fibre used in many of these supplements (see Over the Counter Products below for more). Because fibre supplements can aggravate or cause constipation, check with your doctor or dietitian when using them for more than occasional use. And be clear, constipation can occur if you don’t drink enough water with a high-fibre diet, so just changing your diet may not be enough by itself.

Look to see how much fibre you should be getting daily using this online fibre calculator.

Here is more information about dietary fibre including the fibre content of common foods.

Drink more water

Liquids help to plump out faeces, making them softer and less dense, and so easier to pass. 6-8 glasses are recommended daily. This can be difficult for HSPers with urinary incontinence, as you tend to drink less and less, but adequate water intake is very important. It could be helpful to plan your water drinking for the time of day when a toilet is more convenient, but not too close to bed time, so sleep isn’t interrupted. Keep in mind that the recommended 6-8 glasses per day don’t include caffeinated drinks such as tea, coffee, energy drinks, soft drink, or alcohol. These are all known as diuretics, they make you urinate more, and all are dehydrating.

Get some exercise

Physical activity is very important for many reasons, including heart and lung fitness, strength, flexibility, body weight control, stress control, mental health, and promoting bowel regularity. Find an enjoyable physical activity that you will happily commit to doing regularly. Even if you’re not able or inclined to go to a gym or buy substantial exercise gear, there are exercises most people can do in their homes with minimal equipment or instruction. Variety is good too.

Toilet routine

Establish a regular time for emptying the bowels:

• for constipation, attempt a bowel movement in the morning, soon after waking, or about 30 minutes after a meal. This helps take advantage of the body’s natural gastrocolic reflex.
• respond immediately to the urge to defaecate and not to put off going to the toilet.
• don’t strain down while attempting to defaecate as this won’t empty the bowel effectively, and will place excessive strain on to the muscles that support the pelvic floor.
• use a footstool. A knees-above-hips position places the pelvic floor muscles in the correct position to assist defaecation.
• keep legs apart, with feet flat.
• keep lower back straight, and lean forwards.
• bulge your tummy and widen at the waist – but don’t strain.
• hold this posture while your bowel opens in as many ways as possible.

Pelvic floor muscle training

This can also help with urinary incontinence.

Men and women both have “pelvic floors”, though the anatomy and the methods to keep these muscles strong differ. Your pelvic floor muscles help you to control your bladder and bowel. They also help sexual function.

How to build a strong pelvic floor – for men:

website: http://www.bladderbowel.gov.au/adults/pelvicmen.htm

fact sheet: http://www.bladderbowel.gov.au/assets/doc/brochures/05PelvicFloorMen.pdf

How to build a strong pelvic floor – for women:

website: http://www.bladderbowel.gov.au/adults/pelvicwomen.htm

fact sheet: http://www.bladderbowel.gov.au/assets/doc/Factsheets/English/06PelvicFloorWomenEnglish.pdf

 

Over the Counter Products

If the above lifestyle approaches are not enough to help with bowel control, there is a range of products available over the counter.

As a fibre supplement, psyllium seed husk, a soluble fibre, is ground and used in food products to add fibre or as a thickener. Health food stores love to sell the stuff, however a study has shown that prunes are superior for treating chronic constipation. Eat prunes!

There are numerous brands and types of stool softeners including enemas, suppositories, bulking agents and laxatives. With laxatives there are two main types: bowel stimulants and agents that increase the water content of the stool. But ongoing use of laxatives can contribute to the development of constipation. These products should be used only in moderation to facilitate a bowel movement. Bulking agents can work adversely with certain prescription drugs. Continuous or regular use of these products is generally not recommended unless under the advice of a doctor or pharmacist for longer term care.

More specifics on treatment options including specific brands can be seen here: http://www.mydr.com.au/gastrointestinal-health/constipation-treatment-options

 

Medications

If lifestyle modification and over the counter products aren’t helpful enough…

Doctors sometimes prescribe Bentyl which relieves spasms of the gastrointestinal tract (stomach and intestines) by blocking the actions of spasm-inducing chemicals in the body. It is used to treat functional bowel or irritable bowel syndrome (IBS).

Sacral nerve stimulator implants are being used in patients with severe constipation. The brain controls our body’s muscles and movements through electrical impulses carried by nerves.  Sensations such as fullness in the bladder or rectum, are also relayed to the brain via these nerve routes. Sacral neuromodulation helps to correct inappropriate, unwanted or even erroneous messages sent along these nerve pathways.

 

References:

Continence Nurses and Physiotherapists all can be located either through the Continence Foundation of Australia helpline or through your Area Health Service. You can ring the National Continence Helpline on 1 800 330 066.

 

South Australian Government website (http://www.sa.gov.au/government/entity/1646/About+us+-+Disability+Services/News%2C+events+and+resources/A-Z+of+disability+information+sheets+and+publications). Click on the letter C for Continence and scroll down to “Continence:  key points” and “Continence Resource Center” to learn about free services provided including a phone number for enquiries and appointments with the Registered Nurse at the Continence Resource Centre.

 

MS Australia – Bowel Dysfunction:    http://www.msaustralia.org.au/symptoms-bowel.asp

 

Better Health Channel, Victorian Government Department of Health: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Constipation

 

Bladder and Bowel Website, Australian Government Department of Health and Aging:  http://www.bladderbowel.gov.au/

 

My Doctor for a healthy Australia from MIMS:

http://www.mydr.com.au/tools/daily-fibre-calculator

http://www.mydr.com.au/nutrition-weight/dietary-fibre

http://www.mydr.com.au/gastrointestinal-health/constipation-treatment-options

 

Spastic Paraplegia Foundation (USA):http://www.sp-foundation.org/treatment.html

 

Descriptions of sacral nerve treatment:

http://www.medtronic-gastro-uro.com.au/bladder-sacral-nerve-treatment.html

http://www.goodhealthcare.com.au/nocturnal-enuresis/sacral-nerve-stimulation

 

Prune (dried plum) vs. psyllium therapy trial: http://www.ncbi.nlm.nih.gov/pubmed/21323688

 

Of all the forms of exercise available to HSPers, aquatic therapy, or exercising in water is just about the safest and most beneficial.

If you have access to a hydrotherapy facility, swimming pool, or even a lake or creek when the water is warm enough… then take advantage of this marvellous medium for gently exercising and relaxing spastic muscles, having a whole body workout, and as much fun as you choose!

Here is a PowerPoint presentation Aquatic Therapy (2.8 MB) that you can download that gives a whole range of different ways to exercise in water safely and effectively. The presentation also goes into the background behind the exercises and describes what is going on in the body so that we can understand what we are both trying to achieve and trying to avoid to get maximum benefit.

The Danish Assoc for Ataxia and HSP

The Danish Assoc for Ataxia and HSP had their annual conference on Nov 5th, 2011. Here are sessions from the Conference titled “Quality of Life”.

 

USA Synapse

The Winter 2012 edition of Synapse, the newsletter of the Spastic Paraplegia Foundation in the USA is now available online. Just click on the newsletter image to download as a PDF file (1.6 MB)

Physiotherapist Liz Wrobleski outlines everything you need to know to safely and effectively get the most out of a stationary bike (page 10).

HSP research updates are on pages 11-12.

Electric scooters are covered in great detail on pages 13–15 in an article by Dr. Malin Dollinger.

Here are details of the SPF’s 2011 Research Grant Awards:
Melissa M. Rolls, Ph.D., Assistant Professor,
Biochemistry and Molecular Biology, Penn State
University, University Park, PA, “Function of spastin
in axon regeneration: a new role for the HSP protein
Spastin”

Xue-Jun Li, Ph.D., Assistant Professor, Health Science
Center, Department of Neuroscience, University of
Connecticut, Farmington CT, “Elucidating the role of
BMP signaling in HSP using patient-specific induced
pluripotent stem cells”

Paola Arlotta, PhD, Assistant Professor of Stem Cell and
Regenerative Biology, Harvard University, “Molecular
mechanisms of corticospinal motor neuron dysfunction
in HSP and PLS”

John K. Fink, M.D., Professor, Department of
Neurology, University of Michigan, Ann Arbor, MI,
“Natural history of primary lateral sclerosis and
hereditary spastic paraplegia: establishing parameters
for clinical trials”

Nichole Hein, Ph.D., Postdoctoral Fellow, Department
of Neurology, University of Michigan, Ann Arbor,
MI, “In vitro models of Primary Lateral Sclerosis and
Hereditary Spastic Paraplegia”

 

We have featured bicycles on more than one occasion over the past 12 months, particularly styles that accommodate for impaired balance with HSP.

 

Here is another one that has a social bonus as well… riding with your partner or friend side-by-side. This is a side-by-side cycle that allows parallel riding by two people.

 

It is suitable for those whose disability does not prevent them from maintaining a normal cycling posture but prevents them from cycling alone.

 

Cost is about $1,500.

A study of children with HSP and Spastic Diplegia (SD) shows different gait patterns for each condition, particularly at the knee joint and in the thigh muscle.

 

The predominant clinical feature of patients with Hereditary Spastic Paraparesis (HSP) is gait disturbance owing to spasticity and weakness of the lower limbs; the spasticity in early-onset disease (infancy or childhood) often cannot be distinguished from mild form of spastic diplegia (SD).

 

The aim of this study was to quantify the gait strategy in HSP and SD children, focusing on the differences between groups as concerns functional limitation during gait. 9 HSP and 16 SD children were evaluated using Gait Analysis; kinematic and kinetic parameters and EMG pattern during walking were identified and calculated to compare the two gait strategies.

 

The results revealed that these two pathologies are characterised by different gait strategies. In particular we found that knee joint, in terms of kinematics and kinetics, and rectus femoris pattern represent discriminatory aspects in order to compare and differentiate gait patterns of HSP and SD children.

 

The findings strongly support the issue that HSP and SD patients need individualised therapeutical program, either neurosurgical or pharmacological treatment, based on the quantification of gait deficiencies and in order to address the peculiarity of their motor limitations and to prevent the onset of compensatory strategies.

 

SOURCE: Eur J Paediatr Neurol. 2011 Mar;15(2):138-45. Epub 2010 Sep 15.  Copyright © 2010 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.  PMID: 20829081

 

3D gait analysis in patients with hereditary spastic paraparesis and spastic diplegia: a kinematic, kinetic and EMG comparison.

 

Piccinini L, Cimolin V, D’Angelo MG, Turconi AC, Crivellini M, Galli M.

 

IRCCS “E. Medea”, “La Nostra Famiglia” Association, Bosisio Parini, Lecco, Italy.

 

HSPers can have trouble with urinary function, but this is not easily or often talked about. It’s a huge topic and we’ll just begin the conversation here. This is the first of a two-part series – the second part will appear in the Autumn 2012 edition in early March.

 

The Problem

Problems can include:

• increased urgency – when you have difficulty getting to the toilet quickly enough
• frequency problems – having to urinate unusually often
• incontinence – the inability to hold urine in
• stress incontinence – urine leaks when one sneezes or coughs
• difficulty voiding – not being able to empty the bladder
• hesitancy in starting urination
• frequent nighttime urination (also known as nocturia)

 

The Causes

Non-HSPers also suffer these incontinence issues in large numbers for reasons including: inadequate activity or exercise or immobility, inadequate water intake, inadequate fibre in diet, increased body weight, stress, medicines, depression… all of which also apply to HSPers. Too, current research is showing that low serotonin levels, which are associated with depression, can also cause urinary incontinence. For the HSPer, an additional, specific cause of incontinence is malfunctioning nerve signals leading to lower extremity weakness and spastic muscles.

 

Lifestyle Options

There are lifestyle options that might help to improve control of urinary function.  These include eating more fruits, vegetables and fibre, drinking more (not less!) water and getting some exercise.  Physiotherapy and biofeedback can also be helpful. Both men and women can benefit from exercises to tone pelvic muscles and retrain the bladder.

 

Setting up a daily schedule for when to urinate has been shown to be helpful. For example, urinate when you get up in the morning and then at spaced set times during the day – rather than running to the bathroom every time you think of it.

 

There are numerous incontinence products available now including disposable liners, pads or pants to keep one clean and dry, mattress pads, swim wear and more. Catheterisation (inserting a thin tube into the bladder to remove urine) is helpful for some HSPers (who say it’s not as horrible as it sounds!).

 

Medications

If lifestyle modification alone isn’t enough, there are numerous drugs and patches available, with various side effects and at differing costs.  Of course you would need to talk with your doctor or neurologist about specifics and options but these are a few of the drugs your doctor might prescribe.

For an overactive muscle and also a sphincter which fails to open or close appropriately:

• Propantheline bromide
• Donnatabs
• Oxybutynin
• Imipramine

For those who have a problem with retention, these drugs can allow the sphincter to relax to facilitate emptying:

• Prazosin
• Phenoxy-benzamine

Also found to help with urinary incontinence:

• antidepressant drugs

 

Other Options

There are more newly available options including:

• Botox injections – Botox is injected into the bladder, resulting in relaxation of the bladder.

• Sacral Nerve Stimulator Implants – One way the brain controls our body’s muscles and movements is through electrical messages. These electrical impulses are carried by nerves. Sensations such as fullness in the bladder or rectum, are also relayed to the brain via these nerve routes. Sacral neuromodulation can help correct inappropriate, unwanted or even erroneous messages sent along these nerve pathways.

There is a test phase before implantation of the device. If successful, the device, about the size of a stopwatch, would be surgically implanted in the buttocks to send mild electrical pulses to the sacral nerves. Stimulating the sacral nerves helps the brain and nerves communicate.

 

Resources

We have only just touched on the issue of urinary incontinence here but the important thing is you are not alone and there are treatments available. Unfortunately lots of HSPers and people everywhere have these annoying, embarrassing problems. There are lifestyle issues that might be helpful for you and medical options too, and there are lots of resources for you to explore further.

 

Continence Nurses and Physiotherapists all can be located either through the CFA helpline or through your Area Health Service. You can ring the National Continence Helpline on 1 800 330 066. The following websites offer a wealth of useful information:

 

South Australian Government website (http://www.sa.gov.au/government/entity/1646/About+us+-+Disability+Services/News%2C+events+and+resources/A-Z+of+disability+information+sheets+and+publications). Click on the letter C for Continence and scroll down to “Continence:  key points” and “Continence Resource Center” to learn about free services provided including a phone number for enquiries and appointments with the Registered Nurse at the Continence Resource Centre.

 

Continence Foundation of Australia: http://www.continence.org.au/

Offers a national helpline phone number 1 800 33 00 66 and much more.

 

Bladder and Bowel Website, Australian Government Department of Health and Ageing: http://www.bladderbowel.gov.au/

 

Better Health Channel, Victorian Government Department of Health: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Incontinence_management?open

 

MS Australia – Bladder Dysfunction: http://www.msaustralia.org.au/symptoms-bladder.asp

 

Spastic Paraplegia Foundation (USA): http://www.sp-foundation.org/treatment.html

 

National MS Society (USA): http://www.nationalmssociety.org/living-with-multiple-sclerosis/you-can/control-bladder/index.aspx

 

This video http://www.pelvicexercises.com.au/bladder-control-training/ is ideal for women (and men too) who experience urinary urgency (i.e. intense bladder spasm and overwhelming urge to empty their bladder). It provides simple, effective and practical strategies and bladder control exercises to overcome bladder urgency, retrain the bladder and stay dry.

 

Descriptions of sacral nerve treatment:

http://www.medtronic-gastro-uro.com.au/bladder-sacral-nerve-treatment.html

http://www.goodhealthcare.com.au/nocturnal-enuresis/sacral-nerve-stimulation

 

 

The HSP Workshop was held this year at the University of South Australia on 6 November. 22 HSP community members attended, representing a high percentage of the whole HSP community in SA.

 

Four diverse sessions were presented:

• Genes & Gene Testing – Dr Elizabeth Thompson, Clinical Geneticist, SA Clinical Genetics Service.

• Achieving & Maintaining Good Mental Health – Cindy Eggington, BAppSc (Dis) (Hons); PhD Candidate, School of Disability Studies and Community Inclusion, Flinders University.

• Managing & Maintaining Mobility  – Tamina Levy, Principal Physiotherapist, Complex Neurology Clinic, Repatriation Hospital. Private Neurophysiotherapist.

• Making Life Easier – Laura Oates, Occupational Therapist, Independent Living Centre, Disability Services, Community and Home Support SA.

Genes & Gene Testing

Dr Elizabeth Thompson, Clinical Geneticist, SA Clinical Genetics Service.

The session covered the genetic transmission and inheritance of HSP; gene testing and genetic counselling; and family planning/IVF followed by an engaging Q&A.  Here is Liz’s PowerPoint presentation for download (2.4MB).

 

Achieving & Maintaining Good Mental Health

Cindy Eggington, BAppSc (Dis) (Hons); PhD Candidate, School of Disability Studies and Community Inclusion, Flinders University.

Cindy presented a framework for achieving and maintaining good mental health comprising Relationships, Interests, Lifestyle and Goals. In a highly interactive session, participants generated the following talking points:

• independence and caring issues
• encouraging, but not stifling
• cooperation and collaboration
• communication
• compatibility – sharing, sacrifice
• support in adversity
• trade-offs and alternatives
• understanding – knowledge, acceptance, being accommodating
• loyalty and support
• problem focused versus personal focused (adaptive coping)
• humour, spontaneity
• networking and the skills involved in that
• adapting to a changing environment (either activities or at home)
• security, love and acceptance
• interpersonal needs – handling tension in relationships
• physical needs

Cindy spoke about issues relating to identity, anxiety and tension – how the family sees the HSPer and relates to them. She also talked about post-traumatic growth and the value in finding opportunities in the situation.

It can pay to re-evaluate goals and interests based on what can be, the need to dream as well as plan and to maintain a positive outlook. Also discussed were the importance of friends, of pets and of regular opportunities to be outdoors and to experience natural environments.

As a parting thought, Cindy encouraged participants to not allow anxieties to develop and manifest. Don’t be slow to seek out others to talk to, as well as other ways to share and release anxieties.

 

Managing & Maintaining Mobility

Tamina Levy, Principal Physiotherapist, Complex Neurology Clinic, Repatriation Hospital. Private Neurophysiotherapist.

In a highly practical and hands-on session, Tam explained how

• with HSP, the core strategy is to strengthen weak muscles and stretch spastic ones.
• balance issues can be related to weakness e.g. in the tibialis anterior (shin muscle).
• aquatic exercise and hydrotherapy for both fitness and treatment are almost always helpful and safe for HSPers.
• deep massage before stretching can be beneficial.
• Botox injections to alleviate spasticity need to be followed with intensive therapy.
• dry needling into the motor point of tight muscles can help also.

 

Tam asked participants if any of them used electrical stimulation devices to help strengthen the shin muscle, which is responsible for lifting the toes when walking. The simplest of these devices costs about $300, right up to the NESS L300 Foot Drop System that costs $9,000 for each leg (see the article on Mobility Technology in this edition of the website http://www.hspersunite.org.au/mobility-technology/).

Tam offered an exercise handout drawn in part from this website http://www.physiotherapyexercises.com/ but made the point that HSPers need specific and specialised help with exercise and fitness programs to focus and maximise benefits in those areas most in need, while limiting potential risks and damage from exercises that are not suited.

Ed. Note: Consulting a neurophysiotherapist for assessment, exercise/fitness program development, monitoring and treatment is an excellent investment for HSPers.

 

Here is Tam’s PowerPoint presentation for download (1MB).

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 Making Life Easier

Laura Oates, Occupational Therapist, Independent Living Centre, Disability Services, Community and Home Support SA.

Laura presented a fast-paced session, looking at and discussing a vast range of assistive technologies and devices designed to make life easier for HSPers. Of particular interest were slippers with large Velcro closures over the top and around the back, making them a soft, custom fit for any foot. She talked about choosing and using devices to ensure people get the right one and that they can use safely.

Free consultations are available by appointment with the ILC. You will meet with an occupational therapist for a tailored consultation based on your needs, make recommendations and offer alternatives as appropriate. The ILC do not sell anything – they offer independent advice.

Independent Living Centres are located in every State. Find yours at http://www.ilcaustralia.org/home/default.asp. In South Australia, the Continence Association is incorporated within the ILC.

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Community get-together

The sessions were followed by a social get-together over lunch. The lunch discussion was wide-ranging – one HSPer reported favourably on her experience taking Pramipexole (Mirapex, Mirapexin, Sifrol) for restless legs; the dearth of neurologists in South Australia with HSP experience was highlighted; and there was considerable energy and enthusiasm for forming a local social network for HSPers in South Australia.

 

Thank You

The Foundation is very appreciative of the support given by Prof Susan Hillier who not only organised for university premises to be made available to us for the workshop, but kindly made tea and coffee, and kitchen facilities available to us as well. Heartfelt thanks to Susan and also to the presenters Elizabeth, Cindy, Tam and Laura for their efforts in preparation and presentation, and all for giving up their Sunday for us.