Author: SSAdmin

Handles rough terrain

 

Imagine a wheelchair that is faster, smaller and lighter weight than the others. Now imagine that two-wheeled mobility device being hands free and operated as the rider shifts or rotates his core in any direction!

 

(Therapists are excited about the core involvement, and therefore strengthening, going on here.)

 

This is all possible with the Ogo (previously called Omeo) transportation device. It’s a wheelchair built on a Segway base and the New Zealand inventor Kevin Halsall says that with larger wheels, this wheelchair becomes an all terrain vehicle that will do 20 kilometers per hour on beach sand! He says that in this wheelchair, disabled riders will be able to push a lawn mower again, and while this idea might not excite you, this is a game changer!

 

One of our community members has tried it and is very enthusiastic – he says he can play tennis on it! The Omeo can turn on its own axis and is one of the most compact and manoeuverable chairs available.

 

Assembled in Wellington New Zealand, authorized Agents can assess needs, arrange trials, help with explaining the features of the Ogo.

 

To find an agent, look here: https://omeotechnology.com/agents/

 

Here are over 80 Youtube videos:   https://www.youtube.com/channel/UCEet2cXlz1QMAFGSSkcXhzQ

 

 

And their Ogo/Omeo website: https://omeotechnology.com/

Misdiagnosis, other health conditions, well-being and mobility

 

• About 1/3 of respondents had been misdiagnosed with another condition.

• About 1/3 of respondents report multiple long-term health conditions.

• The average well-being score of respondents who completed an accepted measure of well-being was below the average for the UK population.

• Mobility aids were used by the vast majority of respondents.

 

Adam Lawrence, Chairman of the UK HSP support group and an HSPer himself, has now published the results of the 2018 survey.

 

Adam writes:

Rare disease day is here again, and I’m very pleased to be able to publish the results of my sixth survey.

This survey was launched in the autumn of 2018, and once again I have had a fantastic response from people around the world completing the questions and contributing to my analysis of HSP.

This survey repeats some of the questions asked in my original 2013 survey, and offers the opportunity to look at some results longitudinally. This survey also marks another new variation. I used Google Translate to translate the questions into other languages to allow people who do not speak English to complete the survey. I also used Google to translate their answers into English for this analysis.

There were 304 respondents who completed the survey, predominantly from the USA, UK and Brazil.

A brief analysis shows that 97 people who completed this survey had also completed at least one of my previous surveys, representing about a third of respondents. A small number of people, five, have completed all six surveys. There are 14 respondents who completed both the 2013 survey and this 2018 survey.

Survey categories include misdiagnosis, multiple long-term health conditions, wellbeing, mobility analysis, change in mobility, symptoms, sleep, activities of daily living, support group membership, symptom tracking and well being conclusions.

 

You can find Adam’s blog with Survey results here: http://hspjourney.blogspot.com/2019/02/

And even more Survey information here: https://drive.google.com/file/d/1YaQsuXV7yhz1b5gVsUYLJT_rcAed-g0q

 

Non-mainstream therapies getting attention

 

Pharmacologic interventions including oral and injected drugs are a mainstay of spasticity management; however, drug therapies alone are not considered sufficient, and the general consensus supports a broader therapeutic strategy.

 

The Role of Nonpharmacologic Therapies

“Spasticity management usually requires a multimodal approach, using nonpharmacological and pharmacological treatment strategies,” Patricia Branco Mills, MHSc, MD, FRCPC, physical medicine and rehabilitation specialist at GF Strong Rehabilitation Centre in Vancouver, British Columbia, Canada, told Neurology Advisor. “The goals are generally to improve function, quality of life, and medical/health status through a transdisciplinary, holistic approach,” Dr Mills said.

In a 2017 review of new technologic advances in neurorehabilitative treatments for spasticity, Naro and colleagues² emphasized that physical therapy and occupational therapy should be included in any rehabilitation program for focal or generalized spasticity, with other therapies added to achieve optimal results. In a review of spasticity management in stroke, Francois Bethoux, MD,³ reported that because of complications associated with drug and surgical treatment that may exacerbate functional performance through weakness and compensatory hypertonia in weakened limbs, treatment should rely on nonpharmacologic approaches used either before or adjunctively to these strategies.³ In addition to PT, he pointed to multiple other modalities, including ultrasound, thermotherapy, neuromuscular electrical stimulation and muscle strengthening exercises applied to an agonist muscle, and robotic devices for stretching and movement training, as important to a treatment plan.³

Noninvasive Neuromodulation Therapies

Noninvasive neuromodulation therapies designed to modify neuroplastic mechanisms for better adaptive muscle responses via the application of electromagnetic stimuli in conjunction with weak currents and or biochemical agents show potential for reducing spasticity across a number of conditions.

Repetitive transcranial magnetic stimulation (rTMS) involving the indirect application of magnetic pulses in a repeating pattern to induce cortical excitability, has demonstrated more consistent magnitude and duration of benefits in studies of spasticity.

Transcranial direct current stimulation (tDCS) is a method of direct application of low-amplitude current to the brain via rubber electrodes (with saline-dampened sponges) adhered to the scalp to induce excitability. The treatment exerts a neuromodulating effect on neuronal firing rates and plasticity with potential to restore normal balance of the polarity of the neurons. A sham-controlled study showed Anodal tsDCS significantly decreases spasticity and might be a complementary strategy for the treatment of spasticity in HSP.

 

SOURCE: J Spinal Cord Med. 2018 Dec 3:1-8. doi: 10.1080/10790268.2018.1543926. [Epub ahead of print] PMID: 30508408

 

Spinal direct current stimulation (tsDCS) in hereditary spastic paraplegias (HSP): A sham-controlled crossover study.

 

Ardolino G¹, Bocci T^1,2,3, Nigro M¹, Vergari M¹, Di Fonzo A⁴, Bonato S⁴, Cogiamanian F¹, Cortese F¹, Cova I⁵, Barbieri S¹, Priori A^4,5.

1 a Neuropathophysiology Unit, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy.

2 b Section of Neurophysiopathology, Department of Clinical and Experimental Medicine, Pisa University Medical School, Pisa, Italy.

3 c “Aldo Ravelli” Center for Neurotechnology and Experiental Brain Therapeutics, Department of Health Sciences, University of Milan & ASST Santi Paolo e Carlo, Milan, Italy.

4 d Neurology Unit, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy.

5 e Clinical Center for Neurostimulation, Neurotechnology, and Movement Disorders, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Milan, Italy.

 

Other Noninvasive Therapies

Lacey Bromley, PT, DPT, NCS, MSCS, a physical therapist from Susan Bennett PT and Associates and a consultant in MS therapeutic strategies, explained that several inhibitory techniques can also be employed to reduce spasticity for a short period. “These include prolonged stretching of the spastic muscle (30-60 seconds), prolonged cold of the spastic muscle, biofeedback techniques, and cutaneous electric stimulation on the opposing muscle. However, these strategies will only reduce the tone temporarily.”

“We have had success utilizing [functional electrical stimulation] on the common peroneal nerve, which innervates the anterior tibialis muscle,” she told Neurology Advisor, referring to the task-directed stimulation therapy that, similar to neuromuscular electrical stimulation, delivers small impulses directly to the affected nerves to force muscle contraction that produces functional movement. Both therapies have demonstrated reductions in spasticity in CP, spinal cord injury, and stroke.²

A wide range of nonpharmacologic therapies and devices are under investigation for spasticity. Their benefits, however, rely largely on the hemisphere of application and the underlying mechanisms, which will require further study for better results.⁴ Dr Mills observed that many modalities that show promise include targeted exercises, casting/splints, and electromagnetic devices. “Given that pharmacological options can have side effects that patients want to avoid or minimize, there should be a high priority on investigating nonpharmacological treatment strategies that can be used on their own or to improve the effects of pharmacological strategies when given in combination,” Dr Mills said.

 

SOURCE: https://www.neurologyadvisor.com/topics/movement-disorders/nonpharmacologic-approaches-to-spasticity-management/

Nonpharmacologic Approaches to Spasticity Management

Linda Peckel, January 29, 2019

 

Alternative nonpharmacologic therapies

Nabiximols, a cannabidiol, reduced spasticity symptoms and was tolerable and safe when used in patients with motor neuron disease, according to a phase 2 trial published in Lancet Neurology.

“Although nabiximols has been licensed in many countries for symptomatic control of spasticity in multiple sclerosis and cannabinoids are increasingly recognized as a valuable option for pain management,” concluded the researchers, “before we can confidently recommend the routine use of cannabinoids for symptomatic management of spasticity in patients with motor neuron disease, further studies are warranted to confirm our results.”

 

SOURCE: https://www.neurologyadvisor.com/topics/movement-disorders/nabiximols-improve-spasticity-symptoms-in-motor-neuron-disease/

Nabiximols Improve Spasticity Symptoms in Motor Neuron Disease

Brandon May, January 29, 2019

 

Think Outside the Chair campaign

 

See the full article here: https://www.abc.net.au/news/2018-12-06/think-outside-the-chair-invisible-disabilities-campaign/10567322

 

Living in an Australian society that understands and accepts all forms of disability is no longer a pipedream for New South Wales woman Marni Walkerden.

 

Ms Walkerden is the brains behind the Think Outside the Chair campaign, which launched in the NSW Central Coast region. The online initiative is encouraging the public to download, print and display a new symbol that encompasses all forms of disabilities — both visible and not.

 

Ms Walkerden said that the proposed new icon and accompanying hashtag #ThinkOutsideTheChair will be displayed alongside the universal symbol for disability at public spaces. She said she is optimistic this will help break down the public’s perception of what a disability means and looks like.

 

 

 

Ms Walkerden lives with hereditary spastic paraplegia (HSP) and her ambition of creating change in the way people understand disabilities started many years ago, but she said it was exacerbated shortly after starting to use her mobility parking permit seven years ago. “I got out of the car a few times and had strange looks from people,” Ms Walkerden said. “Five and a half years ago I started working with Ability Links in NSW, which is a State Government-funded program to help people with disabilities and their family members and carers to link into the community.

“The more I spoke to people, the more prevalent I found this problem to be.”

 

Ms Walkerden said that although the campaign is NSW-based, ultimately, she hopes it will go nationwide, with the potential for it to make a difference globally.

 

SOURCE: ABC Riverland 

‘Invisible’ disabilities campaign calls on community to ‘think outside the chair’

By Laura Collins and Lucy Robinson

First posted 5 Dec 2018

 

 

 

Review of HSP Management and Treatment research

 

There is still no adequate evidence base for recommending the various published therapies on HSP management and treatment, despite recent advances in understanding of HSP mechanisms. Well-designed clinical trials are needed to evaluate the efficacy of treatments and therapies.

 

Abstract

The term hereditary spastic paraplegia (HSP) embraces a clinically and genetically heterogeneous group of neurodegenerative diseases characterized by progressive spasticity and weakness of the lower limbs. There currently exist no specific therapies for HSP, and treatment is exclusively symptomatic, aimed at reducing muscle spasticity, and improving strength and gait.

 

The authors set out to perform a comprehensive systematic review of the available scientific literature on the treatment of HSP, applying Cochrane Collaboration methods. The Google Scholar, PubMed and Scopus electronic databases were searched to find relevant randomized control trials (RCTs) and open-label interventional studies, prospective, and retrospective observational studies of supplements, medications, and physical therapy, as well as case reports and case series. Two authors independently analyzed 27 articles selected on the basis of a series of inclusion criteria. Applying a best-evidence synthesis approach, they evaluated these articles for methodological quality. A standardized scoring system was used to obtain interrater assessments. Disagreements were resolved by discussion.

 

The 27 articles focused on pharmacological treatment (n = 17 articles), physical therapy (n = 5), surgical treatment (n = 5). The drugs used in the 17 articles on pharmacological therapy were: gabapentin, progabide, dalfampridine, botulinum toxin, L-Dopa, cholesterol-lowering drugs, betaine, and folinic acid. Gabapentin, progabide, dalfampridine, and botulinum toxin were used as antispastic agents; the study evaluating gabapentin efficacy was well-designed, but failed to demonstrate any significant improvement. L-Dopa, cholesterol-lowering drugs, betaine, and folinic acid were only used in specific HSP subtypes. Two of the three studies evaluating cholesterol-lowering drugs (in SPG5 patients) were well-designed and showed a significant reduction of specific serum biomarkers (oxysterols), but clinical outcomes were not evaluated. The articles focusing on physical treatment and surgical therapy were found to be of low/medium quality and, accordingly, failed to clarify the role of these approaches in HSP.

 

Despite recent advances in understanding of the pathogenesis of HSP and the possibility, in several centers, of obtaining more precise and rapid molecular diagnoses, there is still no adequate evidence base for recommending the various published therapies. Well-designed RCTs are needed to evaluate the efficacy of both symptomatic and pathogenetic treatments.

 

SOURCE: Front Neurol. 2019 Jan 22;10:3. doi: 10.3389/fneur.2019.00003. eCollection 2019. PMID: 30723448

Management of Hereditary Spastic Paraplegia: A Systematic Review of the Literature.

Bellofatto M¹, De Michele G¹, Iovino A¹, Filla A¹, Santorelli FM².

1. Department of Neurosciences and Reproductive and Odontostomatological Sciences, Federico II University, Naples, Italy.
2. Molecular Medicine, IRCCS Fondazione Stella Maris, Pisa, Italy.

New findings from large study

 

3 out of 4 people who have had HSP for an average of 21 years and who have an average age of 55 years have urinary problems, most commonly the need to pee during the night and urgency to pee. Women and people with SPG4 type HSP peed more often and experienced more severe urological problems, leading to a reduced overall quality of life.

 

Abstract

BACKGROUND:

Urinary involvement is common in hereditary spastic paraplegias (HSPs), but has rarely been assessed systematically.

METHODS:

We characterized urinary complaints in 71 German HSP patients (mean age 55.4 ± 13.9 years; mean disease duration 20.7 ± 14.3 years; 48% SPG4-positive) using validated clinical rating scales (SCOPA-AUT, ICIQ-SF, ICIQ-LUTSqol). Treatment history and satisfaction with medical care was also assessed.

RESULTS:

74.6% of patients had one or more urological problems, most commonly nocturia and urgency. Incontinence was more severe in women, correlating with SCOPA-AUT. Female gender and SPG4 mutations were associated with higher urinary frequency and severity of urological involvement. QoL was overall reduced, more in women and in SPG4 mutation carriers. Almost 90% consulted a medical specialist; more than half were largely satisfied. 43.4% received oral medication and 5.7% received intravesical botulinum toxin. However, more than one-third of patients remained untreated.

CONCLUSION:

Urinary complaints are common in HSP and should be addressed and treated.

 

SOURCE: J Neurol. 2019 Jan;266(1):207-211. doi: 10.1007/s00415-018-9129-8. Epub 2018 Nov 22. PMID: 30467602

 

Urinary symptoms, quality of life, and patient satisfaction in genetic and sporadic hereditary spastic paraplegia.

 

Schneider SA^1,2, Beckinger VE³, Möller B³, Knüpfer S⁴, Hamann M⁴, Deuschl G³.

1. Department of Neurology, Christian-Albrechts-University Kiel, Kiel, Germany. susanne.schneider@med.uni-muenchen.de
2. Department of Neurology, Ludwig-Maximilians-University München, Feodor-Lynen-Straße 19, 81377, Munich, Germany. susanne.schneider@med.uni-muenchen.de.
3. Department of Neurology, Christian-Albrechts-University Kiel, Kiel, Germany.
4. Department of Urology, Christian-Albrechts-University Kiel, Kiel, Germany.

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New urinary incontinence underwear for women

 

Washable cotton, absorbent and comfortable

 

A new product Giggle Knickers from the UK is now available in Australia via their website https://www.giggleknickers.co.uk/ for women dealing with urinary incontinence. They come in a brief or high waisted style in a range of sizes at a cost of around $40 AUD delivered.

 

Giggle Knickers describe their product as a new super-soft, light weight, washable cotton knicker with a hi-tech protective panel that keeps you and your clothing dry, for women with a sensitive bladder, which they say is (for different reasons) 1 in 3 women! All this without the bulk or bother of disposable pads. And all those trashed sanitary items are getting to be a big problem around the world!

 

Designed by an award-winning online fashion retailer and design director, Giggle Knickers are the result of a personal quest to find a stylish, comfortable and environmentally-friendly solution to the accidental leaks of stress incontinence.

 

The knickers are designed to be discreet, absorbent, comfortable – and washable! Their website tells of the technology that keeps you dry without pooling and stops clothes getting damp.

 

Look to their website to see styles BRIEF and HIGH WAISTED and for pricing and sizing information. They ship worldwide.

 

 

Complex interaction explored

 

Wheelchair users identity and self-perception, interpersonal relationships and the experience of pain and its management all combine in a complex interaction to determine an individual’s quality of life experience.

 

Abstract

This study investigated how wheelchair-using individuals with paraplegia and chronic pain make sense of the factors associated with quality of life based on interviews using photo-elicitation and interpretative phenomenological analysis.

 

Three superordinate themes emerged in the analysis:

• experiencing quality of life through the perception of self and identity
• interpersonal relationships as facilitators and barriers to quality of life and
• life in a wheelchair: pain experience and management.

 

Quality of life for those living with paraplegia and chronic pain is experienced as a complex interaction across several life domains. The use of photographs may improve the communication of pain-related experiences and understanding by healthcare staff.

 

SOURCE: J Health Psychol. 2017 Dec 1:1359105317750254. doi: 10.1177/1359105317750254. [Epub ahead of print] PMID: 29284303

 

‘I am free in my wheelchair but pain does have a say in it though’: The meaning and experience of quality of life when living with paraplegia and chronic pain.

 

Hughes M1, Burton AE1, Dempsey RC1.

1 Staffordshire University, UK.

The importance of acceptance

 

Acceptance is not submission, nor is it resignation. Acceptance is dealing with reality. It is the starting point for constructive thought and action, and the exact opposite of the kicking, screaming, energy-wasting futility of non-acceptance.

 

This study is about the psychological aspects of traumatic paraplegia, meaning traumatic injury leading to paraplegia such as from vehicle accidents, falls, diving accidents and so on. One day fit and healthy… the next day paraplegic. HSP does not happen quite that way, however many with HSP will be able to relate to the emotional, attitudinal and life assessment aspects identified in this study. It would be wise not to dismiss the findings of this study as irrelevant just because HSP is not considered traumatic paraplegia.

 

Personal Growth and Acceptance

For personal growth to occur after traumatic paraplegia, this study found that adjusting or changing one’s beliefs about the world or worldview and transforming one’s values, in total amounting to the acceptance of disability, is needed.

The process of acceptance of paraplegia includes:

    * regarding physique as less important than other values

    * avoiding comparisons and limitations to people without disability

    * recognising and acknowledging one’s own values and assets, and

    * enlarging the scope of values that are important in one’s life.

 

 

STUDY DESIGN: Cross-sectional study.

OBJECTIVES: Investigating the correlations between basic hope, acceptance of disability, and posttraumatic growth (PTG) in people with traumatic paraplegia, exploring the mediating effect of acceptance of disability.

SETTING: Community-dwelling people with traumatic paraplegia in Poland.

METHODS: Data were obtained from 281 individuals with paraplegia. The set of questionnaires included: The Posttraumatic Growth Inventory (PTGI); Basic Hope Inventory (BHI); and The Multidimensional Acceptance of Loss Scale. Four dimensions of disability acceptance were measured: subordinating physique relative to other values, enlarging the scope of values, transforming comparative-status values into asset values, and containing the effects of disability. Mediation was tested with the Baron and Kenny’s approach.

RESULTS: A positive and statistically significant correlation between basic hope, acceptance of disability, and posttraumatic growth was found. Using a hierarchical regression analysis, a mediating effect of acceptance of disability was found for explaining the relationship between basic hope and posttraumatic growth in people with paraplegia. Only two dimensions of disability acceptance, subordinating physique relative to other values and transforming comparative-status values into asset values, were found to play a mediating role.

CONCLUSION: Beliefs about the world and the transformation of values that constitute acceptance of disability are important for explaining PTG in people with paraplegia. Correlations between these variables are complex. The correlation between basic hope and posttraumatic growth in individuals with paraplegia may be understood better by taking into account the mediating role of acceptance of disability.

 

SOURCE: Spinal Cord. 2018 Oct 29. doi: 10.1038/s41393-018-0215-7. [Epub ahead of print] PMID: 30374064

Basic hope and posttraumatic growth in people with traumatic paraplegia – the mediating effect of acceptance of disability.

Byra S1.

1 Faculty of Education and Psychology, Institute of Pedagogy, Maria Curie-Skłodowska University, Lublin, Poland, Narutowicza 12, 20-004, Lublin, Poland. stanislawa.byra@poczta.umcs.lublin.pl.

Criticism of new insurance industry proposal

 

Lobbyists for Australian life insurers have proposed an AUD$500,000 (USD$360,000) cap on policies for individuals who disclose adverse genetic testing results.

 

Duty of Disclosure

Life insurers in Australia cannot require customers to take genetic tests, but can ask about testing and base coverage or rate decisions on disclosed adverse results. This, it says, has led to concerns that some people would forgo testing because it could affect their insurance coverage and to ask Parliament to call on the Financial Services Council (FSC) to make changes.

 

Harsh Limits Proposed

An article in The Australian newspaper notes that MPs instructed the FSC to model its moratorium on that of the UK, where there’s a £500,000 (USD$650,000) limit for policyholders who have tested positive for Huntington’s disease. Instead, it says FSC’s proposal is “far harsher.” Under this proposal, customers seeking coverage below AUD$500,000 for death and total and permanent disability insurance, AUD$200,000 for trauma, and AUD$4,000 a month for income won’t be asked about their genetic testing results.

 

No Consultation

The limits, the Australian says, are not disease specific and it adds that the FSC did not consult with Treasury, the Health ­Department, or genetics experts before announcing its proposal. An FSC spokesperson tells insuranceNews.com.au that the limits are similar to those of Germany and Switzerland and higher than ones in the Netherlands and Sweden.

 

SOURCE:  genomeweb www.genomeweb.com Nov 5, 2018

Cap Proposed

Focus on symptoms, sleep, activities, misdiagnosis

 

If you haven’t taken this survey before, take 20 minutes to help contribute to a valuable body of knowledge about HSP.

 

The annual survey of HSPers put together by Adam Lawrence, Chairman of the UK HSP Support Group and an HSPer himself, is now available to be taken.

2018 Survey Now Open

The focus for this survey is understanding:

* HSP Symptoms

* Sleep

* Activities of Daily Living

* Support group membership and Progress tracking

* Misdiagnosis

 

Check out Adam’s blog as over 200 responses have already been received and some preliminary results are listed.

 

SOURCE: http://hspjourney.blogspot.com/2018/09/2018-survey-open.html

Adam Lawrence