Author: SSAdmin

Improves spasticity & range of motion

 

This systematic review of the scientific literature provides strong evidence that dry needling is an effective treatment to decrease spasticity and increase range of motion (ROM) both of which are potentially beneficial to general mobility and walking.

 

Importance: This systematic review summarizes existing studies on dry needling for spasticity and range of motion (ROM) and discusses its potential for use as an occupational therapy intervention.

Objective: To examine existing studies on the effects of dry needling on spasticity and ROM.

Data sources: Article citations and abstracts from Scopus, Cochrane Library, PubMed, CINAHL, and a university library search.

Study selection and data collection: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were used in abstracting data. Peer-reviewed journal articles published in English between January 2007 and June 2019 were searched. Of 270 identified studies, 10 met the inclusion criteria. Studies were divided into categories on the basis of outcome measures (Modified Modified Ashworth Scale and ROM). Pain outcome measures were excluded because a systematic review addressing this outcome has recently been completed.

Findings: Strong evidence was found to support the use of dry needling to decrease spasticity and increase ROM.

Conclusions and relevance: This systematic review suggests that dry needling is an effective physical agent modality to decrease spasticity and increase ROM, both of which are potentially beneficial to functional outcomes.

What this article adds: This article provides information that may be helpful in determining the appropriateness of dry needling as an occupational therapy intervention.

SOURCE: Am J Occup Ther. Jan-Feb 2021;75(1):7501205030p1-7501205030p13.  doi: 10.5014/ajot.2021.041798. PMID: 33399051 Copyright © 2021 by the American Occupational Therapy Association, Inc.

Effects of Dry Needling on Spasticity and Range of Motion: A Systematic Review

Rachel Bynum ¹, Olivia Garcia ², Emily Herbst ³, Mary Kossa ⁴, Katrina Liou ⁵, April Cowan ⁶, Claudia Hilton ⁷

1 Rachel Bynum, MOT, OTR, is Graduate, Occupational Therapy Department, University of Texas Medical Branch, Galveston.

2 Olivia Garcia, MOT, OTR, is Occupational Therapist, Winter Pediatric Therapy, Houston, TX. At the time of the study, Garcia was Graduate Student, Occupational Therapy Department, University of Texas Medical Branch, Galveston.

3 Emily Herbst, MOT, OTR, is Occupational Therapist, Encompass Health Rehabilitation Hospital, Round Rock, TX. At the time of the study, Herbst was Graduate Student, Occupational Therapy Department, University of Texas Medical Branch, Galveston.

4 Mary Kossa, MOT, OTR, is Graduate, Occupational Therapy Department, University of Texas Medical Branch, Galveston.

5 Katrina Liou, MOT, OTR, is Graduate, Occupational Therapy Department, University of Texas Medical Branch, Galveston.

6 April Cowan, OTD, OTR, CHT, is Associate Professor of Instruction, Occupational Therapy Department, University of Texas Medical Branch, Galveston.

7 Claudia Hilton, PhD, MBA, OTR, FAOTA, is Associate Professor, Occupational Therapy Department, University of Texas Medical Branch, Galveston

Continuous technological innovation the key

Here are two Australian papers on genetics in neuromuscular diseases, the first from WA reflecting broadly on established and emerging technological innovations in the field; and the second from Victoria reporting on the benefits from new approaches to securing the genetics diagnosis.

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Enormous gains with modern gene testing

Many more advances possible

Abstract

The impact of high-throughput sequencing in genetic neuromuscular disorders cannot be overstated. The ability to rapidly and affordably sequence multiple genes simultaneously has enabled a second golden age of Mendelian disease gene discovery, with flow-on impacts for rapid genetic diagnosis, evidence-based treatment, tailored therapy development, carrier-screening, and prevention of disease recurrence in families.

However, there are likely many more neuromuscular disease genes and mechanisms to be discovered. Many patients and families remain without a molecular diagnosis following targeted panel sequencing, clinical exome sequencing, or even genome sequencing.

Here we review how massively parallel, or next-generation, sequencing has changed the field of genetic neuromuscular disorders, and anticipate future benefits of recent technological innovations such as RNA-seq implementation and detection of tandem repeat expansions from short-read sequencing.

SOURCE: Mol Diagn Ther. 2020 Dec;24(6):641-652. doi: 10.1007/s40291-020-00495-2. Epub 2020 Sep 30. PMID: 32997275

The Impact of Next-Generation Sequencing on the Diagnosis, Treatment, and Prevention of Hereditary Neuromuscular Disorders

Sarah J Beecroft ^1 2, Phillipa J Lamont ³, Samantha Edwards ^1 2, Hayley Goullée ^1 2, Mark R Davis ⁴, Nigel G Laing ^1 2 3, Gianina Ravenscroft ^5 6

1 Neurogenetic Diseases Group, Centre for Medical Research, QEII Medical Centre, University of Western Australia, 6 Verdun St, Nedlands, WA, 6009, Australia.

2 Harry Perkins Institute of Medical Research, QEII Medical Centre, Nedlands, WA, 6009, Australia.

3 Neurogenetic Clinic, Royal Perth Hospital, Perth, Australia.

4 Neurogenetic Unit, Department of Diagnostic Genomics, PP Block, QEII Medical Centre, Nedlands, WA, Australia.

5 Neurogenetic Diseases Group, Centre for Medical Research, QEII Medical Centre, University of Western Australia, 6 Verdun St, Nedlands, WA, 6009, Australia.

6 Harry Perkins Institute of Medical Research, QEII Medical Centre, Nedlands, WA, 6009, Australia.

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Better HSP detection and management

Exome sequencing & bioinformatics analysis are key

In this study, 40% of people with HSP (10/25) received a genetic diagnosis that would not have been possible by more standard means. Overall, the genetic findings had impacts on disease management in 68% of participants.

This Australian study demonstrates the value of a combined exome sequencing and bioinformatics analysis approach to detection and management of a range of neurological disorders including HSP.

Abstract

Currently there is no secured ongoing funding in Australia for next generation sequencing (NGS) such as exome sequencing (ES) for adult neurological disorders. Studies have focused on paediatric populations in research or highly specialised settings, utilised standard NGS pipelines focusing only on small insertions, deletions and single nucleotide variants, and not explored impacts on management in detail.

This prospective multi-site study performed ES and an extended bioinformatics repeat expansion analysis pipeline, on patients with broad phenotypes (ataxia, dementia, dystonia, spastic paraparesis, motor neuron disease, Parkinson’s disease and complex/not-otherwise-specified) with symptom onset between 2 and 60 years. Genomic data analysis was phenotype-driven, using virtual gene panels, reported according to American College of Medical Genetics and Genomics guidelines.

One-hundred-and-sixty patients (51% female) were included, median age 52 years (range 14-79) and median 9 years of symptoms. 34/160 (21%) patients received a genetic diagnosis. Highest diagnostic rates were in spastic paraparesis (10/25, 40%), complex/not-otherwise-specified (10/38, 26%) and ataxia (7/28, 25%) groups. Findings were considered ‘possible/uncertain’ in 21/160 patients. Repeat expansion detection identified an unexpected diagnosis of Huntington disease in an ataxic patient with negative ES. Impacts on management, such as more precise and tailored care, were seen in most diagnosed patients (23/34, 68%).

ES and a novel bioinformatics analysis pipepline had a substantial diagnostic yield (21%) and management impacts for most diagnosed patients, in heterogeneous, complex, mainly adult-onset neurological disorders in real-world settings in Australia, providing evidence for NGS and complementary multiple, new technologies as valuable diagnostic tools. 

SOURCE: J Neurol Sci. 2021 Jan 15;420:117260.  doi: 10.1016/j.jns.2020.117260. Epub 2020 Dec 3. PMID: 33310205 Copyright © 2020 Elsevier B.V. All rights reserved.

The clinical utility of exome sequencing and extended bioinformatic analyses in adolescents and adults with a broad range of neurological phenotypes: an Australian perspective

Dhamidhu Eratne ¹, Amy Schneider ², Ella Lynch ³, Melissa Martyn ⁴, Dennis Velakoulis ⁵, Michael Fahey ⁶, Patrick Kwan ⁷, Richard Leventer ⁸, Haloom Rafehi ⁹, Belinda Chong ¹⁰, Zornitza Stark ¹¹, Sebastian Lunke ¹⁰, Dean G Phelan ¹¹, Melanie O’Keefe ¹², Kirby Siemering ¹², Kirsty West ¹³, Adrienne Sexton ¹⁴, Anna Jarmolowicz ¹⁵, Jessica A Taylor ¹⁴, Joshua Schultz ¹⁴, Rebecca Purvis ¹⁴, Eloise Uebergang ¹⁶, Heather Chalinor ¹⁷, Belinda Creighton ¹⁸, Nikki Gelfand ¹⁹, Tamar Saks ²⁰, Yael Prawer ¹⁹, Yana Smagarinsky ²¹, Tianxin Pan ²², Ilias Goranitis ²³, Zanfina Ademi ²⁴, Clara Gaff ²⁵, Aamira Huq ¹⁷, Maie Walsh ¹⁴, Paul A James ¹⁴, Emma I Krzesinski ²⁶, Mathew Wallis ²⁷, Chloe A Stutterd ²⁸, Melanie Bahlo ⁹, Martin B Delatycki ²⁹, Samuel F Berkovic ²

1 Neuropsychiatry, Royal Melbourne Hospital, Melbourne, Australia; Melbourne Neuropsychiatry Centre & Department of Psychiatry, University of Melbourne, Melbourne, Australia; Melbourne Genomics Health Alliance, Melbourne, Australia.

2 Epilepsy Research Centre, Department of Medicine, Austin Health, University of Melbourne, Melbourne, VIC, Australia.

3 Melbourne Genomics Health Alliance, Melbourne, Australia; Victorian Clinical Genetics Services, Melbourne, Australia.

4 Melbourne Genomics Health Alliance, Melbourne, Australia; Murdoch Children’s Research Institute, Melbourne, Australia.

5 Neuropsychiatry, Royal Melbourne Hospital, Melbourne, Australia; Melbourne Neuropsychiatry Centre & Department of Psychiatry, University of Melbourne, Melbourne, Australia.

6 Genomic Medicine, Royal Melbourne Hospital, Melbourne, Australia; Monash Genetics, Monash Health, Melbourne, Australia.

7 Department of Neuroscience, Central Clinical School, Monash University, Alfred Hospital, Melbourne, Australia; Departments of Medicine and Neurology, The University of Melbourne, Royal Melbourne Hospital, Melbourne, Australia.

8 Murdoch Children’s Research Institute, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia.

9 Population Health and Immunity Division, The Walter and Eliza Hall Institute of Medical Research, Melbourne, Australia; Department of Medical Biology, The University of Melbourne, Melbourne, Australia.

10 Victorian Clinical Genetics Services, Melbourne, Australia; Murdoch Children’s Research Institute, Melbourne, Australia.

11 Victorian Clinical Genetics Services, Melbourne, Australia; Murdoch Children’s Research Institute, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia

12 Australian Genome Research Facility, Melbourne, Australia.

13 Melbourne Genomics Health Alliance, Melbourne, Australia; Genomic Medicine, Royal Melbourne Hospital, Melbourne, Australia.

14 Genomic Medicine, Royal Melbourne Hospital, Melbourne, Australia.

15 Melbourne Genomics Health Alliance, Melbourne, Australia; Victorian Clinical Genetics Services, Melbourne, Australia; Genomic Medicine, Royal Melbourne Hospital, Melbourne, Australia.

16 Murdoch Children’s Research Institute, Melbourne, Australia.

17 Clinical Genetics, Austin Health, Melbourne, Australia.

18 Melbourne Genomics Health Alliance, Melbourne, Australia; Clinical Genetics, Austin Health, Melbourne, Australia.

19 Monash Genetics, Monash Health, Melbourne, Australia; Department of Paediatrics, Monash University, Melbourne, Australia.

20 Monash Genetics, Monash Health, Melbourne, Australia.

21 Victorian Clinical Genetics Services, Melbourne, Australia.

22 Health Economics Unit, Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Australia.

23 Health Economics Unit, Centre for Health Policy, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Australia; Australian Genomics Health Alliance, Melbourne, Australia.

24 School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia.

25 Melbourne Genomics Health Alliance, Melbourne, Australia.

26 Monash Genetics, Monash Health, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia.

27 Clinical Genetics, Austin Health, Melbourne, Australia; School of Medicine, University of Tasmania, Australia.

28 Murdoch Children’s Research Institute, Melbourne, Australia; Department of Paediatrics, University of Melbourne, Melbourne, Australia; Clinical Genetics, Austin Health, Melbourne, Australia.

29 Victorian Clinical Genetics Services, Melbourne, Australia; Clinical Genetics, Austin Health, Melbourne, Australia.

 

And what you can do about it

The elderly and people with chronic health conditions are vulnerable to loneliness, which can harm emotional and physical health. Learn how to loosen its hold.

Nights are the worst for Donna Brown, 69, a retired nurse who has tinnitus, a neurologic condition that causes ringing or other sounds in the ear. “Loneliness comes on when the world is asleep and I’m wide awake listening to the constant noises in my ears. I also feel lonely when I try to share my experiences with others, and they look at me blankly because they can’t understand what I’m going through,” says Brown, a musician and author who lives in Pearce, AZ, with her husband, Gary, and their dog, Caddy.

For Nathan Todd, 35, who has cerebral palsy, loneliness has been a lifelong experience. “When you navigate the world with a disability, the narrative that you’re a burden to people makes you feel lonely,” explains Todd, founder of No Label Defines Me coaching, who lives with his mother in Charleston, SC. The first step in countering his loneliness is identifying it as it happens. “It pops up when I’m going through periods of physical pain,” he says. “It’s about wanting to be understood, but it’s hard for people to relate to the experience of cerebral palsy.”

Loneliness & isolation

The loneliness that Todd and Brown describe differs from social isolation. Isolation is based on how many social relationships a person has, whereas loneliness results from having fewer relationships than one desires. “Loneliness describes how we think about our social relationships and if they satisfy our need for connection and belonging,” explains Louise Hawkley, PhD, senior research scientist for the research organization NORC at the University of Chicago. It’s also different from being alone but content.

Different forms of loneliness

There are nuances of loneliness that can make each experience unique, says Lis Nielsen, PhD, director of the division of behavioral and social research at the National Institute on Aging. Emotional loneliness is a lack of intimacy or attachment. Social loneliness involves unsatisfying personal connections or a feeling of not belonging. Existential loneliness reflects a lack of meaning or a sense of being separate from others and the world. Loneliness can be transient or chronic, situational or reactive. It can happen at any age and whether or not people are alone, Dr. Nielsen says.

But loneliness is nothing new. “I think there has been a pandemic of loneliness for the last 20 to 30 years,” says Dilip Jeste, MD, professor of psychiatry and neuroscience and director of the Center for Healthy Aging at the University of California San Diego.

Tackling Loneliness

Whether you are lonelier now because of the pandemic or felt lonely before it, you can take steps to address the feeling. Start by saying ‘Yes, I’m lonely’ then consider one or more of ways to deal with it.

Cognitive Behavioral Therapy: Cognitive behavioral therapy (CBT) is a short-term solutions-oriented therapy that teaches you how to modify negative thoughts about other people and social interactions, which can help you feel more motivated and open to engaging with others.
Enrichment: Pursuing a new activity may give your life more meaning, says Dr. Jeste. It also could lead to socializing with others who share that interest. Now is the time to learn a language or musical instrument, read challenging books, or master a new form of technology or creative activity. “Every crisis is an opportunity,” says Dr. Jeste.

Physical activity: Exercise reduces loneliness by improving brain function and emotional regulation, distracting you from thinking about what you’re missing in life, providing a sense of purpose, and relaxing the body and mind, Dr. Jeste says.

Mindfulness: Paying attention to, accepting, and learning to live with your feelings of loneliness without judging or reacting to them can help mitigate them.

Connect in person: A 2019 study in the American Journal of Health Promotion found that having social support and meaningful daily interactions with others were strongly associated with lower levels of loneliness while excessive use of social media and texting were associated with greater loneliness.

Gratitude: A study in a 2019 issue of Research on Aging found that when older adults engaged in a daily writing activity focused on what they were grateful for, their feelings of loneliness lessened over a three-week period.

Read more …

SOURCE: Brain&Life Magazine October/November 2020

How to Ease Social Isolation During the Pandemic

By: Stacey Colino

HSPers everywhere invited

The 2020 survey of HSPers by Adam Lawrence, Chairman of the UK HSP Support Group and an HSPer himself, is now available.

The focus for this year’s survey is:

• Participation and Activities
• Needs for those with HSP
• Access to healthcare

Similar to recent years the analysis of answers will take into account both mobility and wellbeing. Responses will be collected until approximately the end of 2020, with results published on Rare Disease Day 2021 – Sunday 28th February.

As with previous surveys only “name” and “country” are required questions. Answer all others that you want. The survey is a similar length to those in previous years, so hopefully would take a similar time.

For the “needs for those with HSP” questions, I am seeking your opinions on what types of information are most important, which makes a change from the usual factual style of questions. I hope that these questions work well!

Complete survey here: http://hspjourney.blogspot.com/2020/10/2020-survey-open.html

Source: http://hspjourney.blogspot.com/2020/10/2020-survey-open.html

Adam Lawrence

Challenges and needs of the sibling role

Siblings of people with disability (PwD) whether as children or adults, face challenges and have needs in their sibling role that have received little acknowledgement and attention overall.

This is not the same as the issues and demands of being a carer, which may be another role for people in a sibling relationship with a brother or sister with disability.

Siblings Australia is a charity that aims to strengthen families with a focus on siblings within families of people with disability.

Siblings of children/adults with disability

The sibling relationship

• Siblings are important, both in terms of their own wellbeing but also what they contribute to the PWD
• Sibling relationship a key lifetime relationship, regardless of any carer role

Sibling challenges

Sibs are largely overlooked in policy and programs.

Mapping Project 2017 survey of parents, providers and adult siblings highlighted the challenges for siblings and the little support available. Stresses include:

• Identity issues – who am I?
• Isolation – family/peers
• Confusion, lack of information
• Difficulty expressing feelings
• Anger/resentment/grief
• Guilt, ‘secrets’, shame, low self-esteem
• Depression/anxiety
• Extra responsibility/family stress
• Pressure to achieve
• Concerns re future – career, where live, having children

Sibling needs

• Information
• Strong connections – family, peers
• Help with expression of mixed feelings
• Assist relationship with PWD – managing difficult/aggressive behaviour, having fun
• Identity development
• Help with managing others’ reactions
• Support with asking for help
• Support with community access
• Contact with other siblings of PWD
• Understanding from parents/professionals

I felt completely isolated. I thought I couldn’t share any of that part of my life with my friends. They didn’t understand and I felt alienated from them. Other kids never had the same responsibility.

Discussions amongst my non-disabled siblings led us to observing that at no stage in our lives has any professional, agency or service ever asked us if we were ok, how did we feel, did we need anything or offered us support.

Protective factors

• open communication within family
  • information, permission, feel special
• strong connections with family/friends
  • sense of value, positive meanings
• outside sources of support e.g. school, community programs
  • skills/coping strategies/ how ask help
• connections with other siblings
• help with independence/future

Support options

• individual sib
  • listen, give permission, share resources, help develop skills, encourage social networks, connections
• assist parents to support sibs
• family programs/counselling
• schools, community
• siblings in groups (not suitable for all)
  • formal/informal
• ADULTS

Siblings Australia

Our Mission Siblings: Acknowledged, Connected, Resilient

• Awareness/advocacy/research
• Website/resources
• Online networking – teen and adult sibs
• Parent & professional learning/NDIS 1-on-1 parent sessions
• SibworkS facilitator manual/booklets
• ILC funding 3 years:
  • build capacity siblings
  • new website + e-learning + national guidelines sib support
  • family ‘voices’
  • develop sustainability for organisation

Summary

Sibs need more recognition (NOT as Young Carers, as siblings)
EARLY and LIFELONG support leads to stronger sibs and stronger sib relationships.

Sibs more able to develop a ‘good life’ for themselves but also more likely to contribute to a ‘good life’ for their brother/sister with disability.

World first device in Sydney

 

The LEXO®, a new state-of-the art robotic gait rehabilitation therapy device, launches in Australia on World Stroke Day, 29 October.

The intensity and quality of gait training achievable with the Lexo is significantly superior to current technologies. The video demonstrates this clearly, showing the difference between gait training in a harness and on the Lexo.

The first of its kind equipment is being hailed a revolutionary game changer for over 60,000 Australians who suffer from a Stroke every year, as well as for people living with other neurological disabilities such as brain or spinal cord injury, Multiple Sclerosis, Parkinson’s, Hereditary Spastic Paraplegia, Cerebral Palsy and Functional Neurological Disorder (FND).

The LEXO® works by helping to improve walking ability, speed and endurance more effectively through its individually adjustable end-effector gait training robot, combined with dynamic body weight support system. These features facilitate a natural walking pattern, provide sensory feedback and dynamic body weight support to assist with re-training gait.

Advance Rehab Centre (ARC) in Artarmon, Sydney, is the first rehabilitation centre in the world to purchase this device. ARC has physiotherapists with HSP experience, with a number of HSP community members attending regularly.

ARC is a leading Sydney neurological rehabilitation and disability provider. ARC houses a team of experienced multi-disciplinary clinicians working in a community-based rehab service. Over the last 12 years ARC has built a reputation as one of the most progressive neurological rehab services in Australia. Therapy is available in person or at client’s home/park/other location or can be done via tele-health (online) for patients throughout Australia.

Read more …

 

SOURCE: Science & Medical | 29/10/2020

New Robot-Assisted Therapy Launches in Australia on World Stroke Day

 

 

Brief instruction found to help

 

A study of physical therapists and occupational therapists in Texas, USA, found almost 3/4 unfamiliar with HSP. 9/10 had never received instruction on HSP. Diagnostic accuracy improved significantly after training.

 

The relevance to the Australian context is unknown although anecdotally reports from people with HSP of allied health professionals unfamiliar with HSP are common.

 

Aims: The aim of this two-part, prospective study was to determine therapist familiarity with HSP and examine diagnostic accuracy between individuals with HSP and those with Spastic Diplegic Cerebral Palsy (SD-CP).

Methods: Part-one surveyed physical therapists (PT) and physical therapist assistants (PTA) throughout Texas to determine familiarity with HSP and its gait deviations. Part-two examined accuracy in differential diagnosis of HSP versus SD-CP using gait analysis and the effects of an educational module on upper body gait deviations observed in individuals with HSP.

Results: Both PTs and PTAs indicated a high degree (≥73.2%) of unfamiliarity with HSP. While a majority of respondents (≥88.7%) indicated use of observational gait analysis in clinical practice, ≥92.5% indicated never receiving instruction on HSP or its associated gait deviations. Whole group analysis revealed diagnostic accuracy increased 21.7% post educational module. In addition, individual case diagnostic accuracy yielded significant improvement in 14 out of 20 cases.

Conclusions: Physical and occupational therapists are in a unique position to assist with the identification and distinction of HSP from CP. This study demonstrated that brief instruction on common upper body gait deviations seen in individuals with HSP may improve a clinician’s ability to distinguish SD-CP from HSP via gait analysis.

 

SOURCE: Phys Occup Ther Pediatr. 2020 Sep 17;1-15. doi: 10.1080/01942638.2020.1819934. Online ahead of print. PMID: 32942942

Familiarity with Hereditary Spastic Paraplegia (HSP) and Differentiation of Upper Body Gait Characteristics between Children with HSP and Spastic Diplegic Cerebral Palsy

Christina Bickley  ¹ , Katy Mitchell  ¹ , Allison Scott  ² , Meredith Bury  ³ , Mayowa Oyelami  ⁴

1. School of Physical Therapy, Texas Woman’s University, Houston, Texas, USA.
2. Shriners Hospitals for Children, Houston, Texas, USA.
3. Elite Physical Therapy, Graham, Washington, USA.
4. Neurological Residency Program, Harris Health System, Houston, Texas, US

 

Linked to limited HSP knowledge

 

People with HSP report lower satisfaction, trust and participation in meetings with both their GP/family doctor and specialist health services than people in the general population. Poorer experiences with health services were associated with more health problems.

 

Whilst the results of this large Norwegian study of 108 people with HSP cannot be confidently assumed to hold in Australia, the same basis for this situation exists in both locations, namely limited knowledge about HSP amongst health professionals.

 

Background: Persons with rare disorders may experience poorer health services due to limited knowledge about rare disorders among health professionals. Knowledge about how persons with rare disorders perceive health services can help inform service providers to enhance their practices.

Methods: We conducted a self-report survey among adults with the rare disorders hereditary spastic paraparesis (HSP; n = 108; mean age 57.7 years; 54.2% females) and neurofibromatosis type 1 (NF1, n = 142; mean age = 50.3 years; 62.0% females). Their responses concerning perceived health experiences were compared to healthy controls from the population study HUNT-3 (n = 7,312).

Results: Both rare disorder groups reported lower satisfaction, trust, and participation in meetings with their general practitioner and specialist health services. More reported health problems were overall associated with poorer health service experiences.

Conclusion: There is a need to identify predictors of health service experiences at the patient and health service provider levels with the aim to tighten the gap between the health experiences of patients with and without rare disorders.

 

SOURCE: Mol Genet Genomic Med. 2020 Sep 14;8(10):e1399. doi: 10.1002/mgg3.1399. Online ahead of print. PMID: 32924306 © 2020 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals LLC.

Health service experiences among adults with hereditary spastic paraparesis or neurofibromatosis type 1

Krister W Fjermestad  1   2 , Øivind Kanavin  2 , Livø Nyhus  2 , Lise B Hoxmark  2

1. Department of Psychology, University of Oslo, Oslo, Norway.
2. Frambu resource centre for rare disorders, Siggerud, Norway.

 

Talking about it is a good start

HSP community member David, from Brisbane, recently told his story, with courage and vulnerability, about the challenges to mental health in his life, including living with HSP.

 

The podcast is part of a series by TradeMutt, a mental health advocacy group based in Brisbane. TradeMutt is a social enterprise and an Australian Workwear brand that aims to make tradies and workers of all kinds look and feel great at work, and in doing so, reduce the rate of male suicide in Australia. HSPer Dave was recently a guest in this, their 38th podcast.

TradeMutt supports the TIACS Foundation that provides mental health support services.

Additional mental health resources

If you are feeling the impact on your mental health and well-being, here is a range of resources available to help.

The NDIS have released new information packs on:

• psychosocial disability – to help people with psychosocial disability and their carers get the most out of their NDIS plan during the pandemic.
• mental health and well-being – to help you, your family and carers look after your mental health and well-being.

Information on coronavirus (COVID-19) and mental health is available on the Department of Health website here as well as a 24-hour Coronavirus hotline 1800 020 080 or NDIS 1800 800 110.

More resources:

Lifeline https://www.lifeline.org.au/on 13 11 14

Kids Helpline https://kidshelpline.com.au/on 1800 551 800

Beyond Blue https://www.beyondblue.org.au/ on 1300 224 636

Headspace https://headspace.org.au/ on 1800 650 890

SANE Australia https://www.sane.org/ on 1800 187 263

Suicide Call Back Service https://www.suicidecallbackservice.org.au/ on 1300 659 467

 

Build arm and leg strength, core stability and fitness

 

Here are some seated exercise videos that are easy to follow and suitable for many people with HSP.

 

Firstly, 2 videos from the MS Society:

10 minute wheelchair/seated arm workout

Exercises for those with limited strength of the arm muscles

 

10 minute wheelchair/seated core stability workout

 

Seated Aerobic workout video by Paul Eugene

suited to those with relatively strong upper arm muscles. There are several more videos of his on YouTube.

Duration: 16 to 30 minutes

 

Wheelchair yoga for beginners

This is a 16 minute video combining stretching and breathing exercises to do seated.