Covid’s impact on living with HSP

Trying times for many

As people with disability constitute a broad, high-risk group in the community with respect to Covid-19, the negative impacts directly or indirectly related to the pandemic are being felt in multiple ways.

Here are some of the direct ways that the pandemic is especially affecting many people with disability, drawn from reports in the media:

  • Accessing care is an issue for many with allied health services such as physiotherapy, occupational therapy and podiatry not being available in some places for extended periods
  • Availability of medications – certain prescription medications are in short supply with reports of unavailability in some instances
  • Social contact with family and loved ones has been irregular or impossible given restrictions in some locations and settings
  • Availability of personal protective equipment (PPE) particularly in care environments has been patchy, increasing the risk to all concerned.

It is not surprising that increased stress, anxiety and depression are being reported in the disability community. All these impacts of the pandemic add to the challenge of maintaining good mental health.

Here are 4 angles on the nature and extent of the impact of the global pandemic on people with disability:

  • A report on the topic from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disabilities
  • A survey of 109 people with HSP from the Netherlands
  • A survey by Every Australian Counts focused on Australians with disability dealing with the NDIS in recent times, and
  • A good news story of a UK boy who found a wheelchair swing during lockdown.


People with disabilities left behind in Covid-19 response

Report on the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disabilities – from various sources

In his opening address at the latest hearings of Australia’s Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disabilities, commission chair Ronald Sackville noted that the harrowing phone calls to the commission’s hotline during the early weeks of the pandemic had prompted it to issue a statement of concern in March. In it, the commission had called on the government to “take all necessary measures to ensure the protection and safety of persons with disabilities”.

The fear of being overlooked for potentially life-saving care is very real among disabled people, made worse by comments in both mainstream and social media. Witnesses and disability advocates testified to the Royal commission that they feared the worst, given the high rates of chronic medical conditions among people with disabilities, in combination with the hazards associated with the types of housing and support services provided to many of them. Disabled witnesses and their family members testified to the disproportionate impact that the pandemic’s social and financial ramifications have had on their overall health and wellbeing.

One of the most basic ways people living with disability in Australia have “disappeared” during the pandemic is our absence from the Covid-19-related data. As noted by senior counsel assisting Kate Eastman, SC, in her opening statement, while there are statistics on Covid-19-related hospital admissions and deaths, as well as the age and gender of the people who have died, “there is no data or statistics that tell us about the rate of infection or death for people with disability”.

Department of Health assistant secretary Simon Cotterell and deputy chief medical officer Dr Nick Coatsworth both confirmed that no government department had collected specific data on coronavirus deaths among people with disabilities. However, Samantha Taylor, the registrar of the National Disability Insurance Scheme Quality and Safeguards Commission, told the hearings that by August 13, eight NDIS participants and one support worker had died while positive for Covid-19, and another 76 participants had been infected.

Professor Anne Kavanagh of the Melbourne School of Population and Global Health cited failures in the initial response, including lack of access to personal protective equipment for people living with disability and their carers, and the lack of information in accessible formats such as braille, sign language and easy-read versions for people with intellectual disabilities. She also cited the sudden withdrawal of services – sometimes at the instigation of the disabled person themselves, at other times after their support workers were exposed to or contracted Covid-19 – and, in particular, the higher degree of potential exposure to Covid-19 for those who live in group homes or attend respite services.

Many witnesses testified about the various obstacles people living with disability face in conforming to Covid-safe protocols. It is difficult or impossible for many disabled people to avoid close physical contact with support workers who may be working with many other clients across multiple sites. Given the diversity of impairments among people with disabilities though, the impact of the pandemic has not been evenly experienced, with commissioners and witnesses noting that women, people from culturally and linguistically diverse communities and those from First Nations communities have been particularly hard hit.

Witnesses described their own mixed experiences of the pandemic, with stress and anxiety mingled with the unexpected bonus of being able to access provisions such as working from home and telehealth services, for which disability advocates had long lobbied. “Everything I have been campaigning for, for 20 years, has now been dropped in my lap and I’m so scared they’re going to go [away],” Melbourne woman Ricky Buchanan said.

The figure of Adelaide woman Ann Marie Smith, who died in April after being discovered in her home in a state of horrific neglect, haunted the royal commission. Testimony was heard about the abuse that might be inflicted by carers in the absence of external scrutiny. Family violence survivor and advocate Nicole Lee testified that it is likely the extreme reduction in contact with the outside world during lockdowns, in combination with the fact that abusers are likely to be always in the background, particularly if they are an intimate partner, has increased the rate of abuse and limited the ability of women with disabilities to seek help. Leah van Poppel expressed similar concerns, noting that, in regard to people with disabilities, women are most likely to experience abuse.


A recent survey of 109 people with pure forms of HSP in the Netherlands

Changes in physical activity, stress, symptom severity

This survey of people with HSP confirms that a reduction in physical activity is linked with increased muscle stiffness, pain, physical fatigue and worse gait and balance.

74% have reduced levels of physical activity; 43% are experiencing increased stress; and the majority say their symptoms are more severe. Muscle stiffness, pain, fatigue, balance and gait impairment were all worse. The findings are based on a recent survey of 109 people with pure forms of HSP in the Netherlands.


Hereditary spastic paraplegia (HSP) is a neurodegenerative disorder, characterized by progressive spasticity and muscle weakness of both lower extremities [1]. Spasticity-related symptoms such as muscle stiffness and gait impairments are common and disabling in HSP [2]. Moreover, patients experience a substantial burden from both physical and mental fatigue [2].

Our clinical experience is that physical activity positively impacts on these symptoms, whereas psychological stress may impact negatively. This has, however, not been formally investigated. The (partial) lockdown due to the COVID-19 pandemic has profoundly changed people’s normal routine, presumably reducing levels of physical activity and increasing psychological stress [3], thereby creating an opportunity to explore the influence of these changes on symptom severity in HSP.

We conducted a web-based survey among people with pure HSP [2] in the Netherlands. An invitation was sent to participants from our previous survey (n=109), which was approved by our regional medical-ethics committee. Participants were asked to rate possible changes in levels of physical activity, psychological stress, and symptom severity on a 5-point Likert scale.

58 participants returned a completed survey. Their average age was 57 years (range 30–77) with 53:47% female:male. A reduction of physical activities was reported by 74% (33% strong decrease, 41% mild decrease), whereas 19% reported no change and 7% mild increase. An increase in psychological stress was reported by 43% (3% strong increase, 40% mild increase), 50% reported no change, and 7% decrease (2% strong, 5% mild). The majority reported a general increase in symptom severity

Participants with reduced physical activity more often experienced increased muscle stiffness (p=0.001), pain (p = 0.004), physical fatigue [χ2 (1) = 4.680, p = 0.031], and gait impairments [χ2 (1)=5.129, p=0.024] compared to those with no change or an increase in physical activity (Fig. 2). The same trend was seen for balance impairments [χ2 (1)=3.291, p=0.070]. Those who reported increased levels of psychological stress more often reported an increase in muscle stiffness [χ2 (1)=4.612, p=0.032], pain [χ2 (1)=3.943, p=0.047], and mental fatigue [χ2 (1)=6.234, p=0.013]. Forward regression analysis of muscle stiffness and pain revealed that only decreased physical activity was independently associated with an increase in muscle stiffness [R2=0.236 (p<0.001)] and pain [R2=0.193 (p=0.003)].

Six participants were treated with intramuscular botulinum toxin injections to reduce spasticity-related symptoms. During the lockdown, treatment continued in five participants.

The partial lockdown in the Netherlands due to the COVID-19 pandemic resulted in a reduction of physical activity in the majority of participants with HSP, which proved to be associated with increased muscle stiffness, pain, physical fatigue and gait impairments. This result is coherent with findings in other chronic (neurodegenerative) conditions [4] and underscores the potential impact of physical activity on symptom severity in people with HSP. Future studies may investigate whether the present findings can be extended to other conditions resulting in spastic paraparesis (e.g. multiple sclerosis and primary lateral sclerosis). Future studies may also evaluate the effect of interventions targeting daily physical activity in this population, preferably including objective outcomes, which were lacking in the present study. Another limitation is the lack of comparison between current and previous clinical status, which was not possible due to the lockdown restrictions. An additional limitation is the risk of selection bias, which may have resulted in an overestimation of changes in physical activity, psychological stress, and/or symptom severity. The question remains whether people with HSP are able to return to ‘baseline’ levels of functioning after release of the lockdown and expected increase in physical activity.

See the entire free article here:

SOURCE: J Neurol. 2020 Jul 7;1-3. doi: 10.1007/s00415-020-10016-0. Online ahead of print. PMID: 32638108

COVID-19 reveals influence of physical activity on symptom severity in hereditary spastic paraplegia

Lotte van de Venis 1Bart P C van de Warrenburg 2Vivian Weerdesteyn 3Bas J H van Lith 3Alexander C H Geurts 3 4Jorik Nonnekes 3 4

1 Donders Institute for Brain, Cognition and Behavior, Department of Rehabilitation, Center of Expertise for Parkinson and Movement Disorders, Radboud University Medical Center, Nijmegen, The Netherlands.

2 Donders Institute for Brain, Cognition and Behavior, Department of Neurology, Center of Expertise for Parkinson and Movement Disorders, Radboud University Medical Center, Nijmegen, The Netherlands.

3 Donders Institute for Brain, Cognition and Behavior, Department of Rehabilitation, Center of Expertise for Parkinson and Movement Disorders, Radboud University Medical Center, Nijmegen, The Netherlands.

4 Department of Rehabilitation, Sint Maartenskliniek, Ubbergen, The Netherlands.


EAC survey

Every Australian Counts surveyed the disability community about the impact of the pandemic. 721 people responded. Most were people with disability and/or families. There were a small number of responses from people who supported people with disability – such as advocates or support coordinators.

We asked them what impact the pandemic had on their lives, how they coped – and what they thought of the changes made to the National Disability Insurance Scheme (NDIS) during this time.

Here’s what they said:

  • People said they felt forgotten and ignored by government and by the community during the pandemic – despite the very real challenges that they faced.
  • 32% said their costs had gone through the roof, and many were struggling to make ends meet. Almost 50% of people with disability were already in already living in poverty before the pandemic began.
  • Many people were stressed, anxious and stretched almost to breaking point.
  • And while changes made to the NDIS during this time helped some, others found themselves unable to get what they needed.
  • Confusing, inconsistent and changing information contributed to people feeling even more overwhelmed and unsure of where to turn or what to do.
  • For some the complicated NDIS processes and lengthy delays were exhausting and frustrating – but not life threatening. But for others continued delays threatened their very health and wellbeing.
  • Despite all of this, there was, and remains, very strong support for the NDIS amongst people with disability and their families. They fought for it, they believe in it. They desperately want it to work.
  • And they want to be partners in making that happen – they want the NDIA to talk less and listen more. They want to check changes before they are made to make sure they will work for them. And they want a simpler streamlined scheme so they can get on with their lives.

Read more …


Gregor Marshall, 15, from Cumbernauld in the UK, who has HSP and is currently unable to stand, attends the Craighalbert Centre.


Using a wheelchair swing for the first time, he said he had been unable to access this type of equipment elsewhere during lockdown and said it is “better than being on a normal swing”.

“It’s 100% better since I’ve been coming here,” he said. “It gets me out instead of being stuck in the house.”

Starting at the centre was his own idea, he added, saying: “I thought it would maybe, at the end of it, help me to start standing more.”


See entire article here …



Children and families speak about their experience at the Craighalbert Centre

by Press Association 22/06/2020



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