A while ago we ran an article on the Ogo wheelchair. The Ogo is now available in Australia (designed and made in NZ) and the price listed on the website is USD $16,995, which is close enough to AUD $21,400 at current rates. Check out this site for more information: http://www.electricvehiclesoceania.com.au/ogo-2/ogo-features-specs/
A community member asked a question about the Ogo:
Grant here, I was wondering what sort of price are they going to be? It sure would be handy with the lawn. I have to use a hand trolley with the mower at the moment. It takes a bit of extra time. Thanks.
The answer is yes, you can push a lawn mower with the Ogo … or walk the dog or take the rubbish bins in and out with it. It is small and sporty and fun but in the opinion of a community member who tried one, it is also expensive and heavy at 64.8kg, so impossible to get up steps or into a car without ramps, and tricky to take on planes because of the lithium ion battery. But, she added, it is cool and fun!
Quingo Mobility Scooter
The number of mobility scooter users in Australia is growing. The freedom and independence mobility scooters offer translates to an improved quality of life.
Quingo scooter range
3 wheel scooters are agile, but are more easily destabilised, while 4 wheel scooters are stable but have limitations in access. The Quingo http://www.quingo.com.au/ 5-wheel mobility scooter is said to overcome the design limitations of both the 3 wheel and 4 wheel scooter options, according to the supplier. The 5-wheel design offers greater stability, greater agility and greater comfort, that in turn translates to greater safety.
Here are two YouTube videos by the manfacturer about the Quingo scooters.
In HSP, 4 main contributors to balance impairments can be identified:
The first intrinsic risk factor is spasticity as it hampers the capacity to make sufficiently fast stepping responses in situations where you need to move to maintain balance and prevent falling
muscle contractures and joint deformities do not allow good responses to maintain balance, whether or not that involves moving the feet
muscle weakness does not allow good responses to maintain balance and contributes to falls through the inability of weak muscles to prevent falling
reduced proprioception caused by delay in nerve signals results in delayed postural responses.
. . .
Treatment options
Risk factors need to be assessed on an individual basis to come up with the right treatment mix.
* Spasticity treatment options include Botox injections in the calves and specific stretching.
* For muscle contractures and joint deformity, treatment may include Botox injections in the tibialis posterior muscle; orthopaedic footwear may help compensate for the contribution of deformed ankle joints to poor balance. Intensive stretching should always accompany these treatments to improve muscle length and inhibit muscle tone.
* If at least some component of muscle weakness is because of disuse, a comprehensive physical training program designed by a physiotherapist will include strengthening and stretching components, with a preference for cycling or aquatic exercises over walking.
* Impaired proprioception cannot be restored, however compensation strategies can be learned and employed, for example, by performing daily balance exercises at home such as alternately standing on one leg while gradually reducing assistance from a wall or table. Again, physiotherapists can design such exercises and teach them to you in one session.When balance impairment is so severe that falls occur regularly, the use of stabilising walking aids is necessary, not to lean on, but to obtain sensory information through the arms. So Nordic walking sticks are preferred over conventional canes or crutches or a walker – the objective is to use the minimal amount of support needed to prevent falls while still challenging the capacity to stay balanced to the extent possible.
Balance impairments are common in patients with hereditary spastic paraplegia and are among the most debilitating symptoms, as they frequently result in falls and fall-related injuries. Several features of hereditary spastic paraplegia contribute to balance impairments and multiple treatment options exist. However, an overview of these underlying mechanisms and their treatment is currently lacking.
METHODS:
This paper reviews the pathophysiology, diagnostic workup, and management of balance impairments in hereditary spastic paraplegia. Recommendations are based on scientific evidence, when available, and otherwise reflect practice-based evidence supported by clinical experience.
CONCLUSION:
Through diligent history-taking and clinical examination, followed by multidisciplinary treatment tailored to the identified underlying mechanisms, balance capacities can be improved in patients with hereditary spastic paraplegia and at least a proportion of falls can be prevented.
Pathophysiology, diagnostic work-up and management of balance impairments and falls in patients with hereditary spastic paraplegia.
Nonnekes J1, van Lith B, van de Warrenburg BP, Weerdesteyn V, Geurts ACH.
1 Department of Rehabilitation, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, 6541GX Nijmegen, The Netherlands. jorik.nonnekes@radboudumc.nl.
This is an insightful, thought-provoking article from the New York Times with questions, themes and messages that are universal.
Becoming Disabled
Roughly one in five Americans lives with a disability. So where is our pride movement?
by Rosemarie Garland-Thomson*
Not long ago, a good friend of mine said something revealing to me: “I don’t think of you as disabled,” she confessed.
I knew exactly what she meant; I didn’t think of myself as disabled until a few decades ago, either, even though my two arms have been pretty significantly asymmetrical and different from most everybody else’s my whole life.
My friend’s comment was meant as a compliment, but followed a familiar logic – one that African-Americans have noted when their well-meaning white friends have tried to erase the complications of racial identity by saying, “I don’t think of you as black,” or when a man compliments a woman by saying that he thinks of her as “just one of the guys.”
. . .
This impulse to rescue people with disabilities from a discredited identity, while usually well meaning, is decidedly at odds with the various pride movements we’ve come to know in recent decades. Slogans like “Black Is Beautiful” and “We’re Here, We’re Queer, Get Used to It!” became transformative taunts for generations of people schooled in the self-loathing of racism, sexism and heterosexism. Pride movements were the psycho-emotional equivalents of the anti-discrimination and desegregation laws that asserted the rights of full citizenship to women, gay people, racial minorities and other groups. More recently, the Black Lives Matter and the L.G.B.T. rights movement have also taken hold.
Yet pride movements for people with disabilities – like Crip Power or Mad Pride – have not gained the same sort of traction in the American consciousness. Why? One answer is that we have a much clearer collective notion of what it means to be a woman or an African-American, gay or transgender person than we do of what it means to be disabled.
A person without a disability may recognize someone using a wheelchair, a guide dog or a prosthetic limb, or someone with Down syndrome, but most don’t conceptualize these people as having a shared social identity and a political status. “They” merely seem to be people to whom something unfortunate has happened, for whom something has gone terribly wrong. The one thing most people do know about being disabled is that they don’t want to be that.
Yet disability is everywhere once you start noticing it. A simple awareness of who we are sharing our public spaces with can be revelatory. Wheelchair users or people with walkers, hearing aids, canes, service animals, prosthetic limbs or breathing devices may seem to appear out of nowhere, when they were in fact there all the time.
… The article finishes with this paragraph
Becoming disabled demands learning how to live effectively as a person with disabilities, not just living as a disabled person trying to become nondisabled. It also demands the awareness and cooperation of others who don’t experience these challenges. Becoming disabled means moving from isolation to community, from ignorance to knowledge about who we are, from exclusion to access, and from shame to pride.
A 55-year-old man with HSP, with only minor spasticity and no significant muscle shortening experienced a complete tear in one of the major muscles at the front of the thigh, first in one leg and then in the other after only minimal trauma, raising the question as to whether chronic spasticity might lead to changes in muscle tissue, or whether the genetic mutation itself might adversely affect muscle tissue making muscle tears more likely and more common.
BACKGROUND:
This case raises questions about the pathophysiology of muscle ruptures in highly functional patients with hereditary spastic paraplegia (HSP) who have only minor spasticity and no significant muscle shortening. Literature on the skeletal muscle changes secondary to spasticity or to the underlying disease, HSP, has been explored and compared with this clinical case. Two theoretical hypotheses are discussed. Firstly, chronic spasticity might be a risk factor for histopathological muscle alterations. Secondly, altered protein synthesis due to the underlying genetic mutation may play a role in the mechanical integrity of muscle tissue.
CASE REPORT:
This is the first case report of a sequential bilateral complete disruption of the rectus femoris muscle after minimal trauma, in a 55 year old man with HSP. Pain was the main complaint, without significant increase in spasticity. Walking ability was not significantly impaired. Conservative treatment resulted in resolution of the complaints.
CLINICAL REHABILITATION IMPACT:
This unique case of a bilateral complete rectus femoris muscle rupture after minimal trauma in a patient with HSP presenting with minor spasticity raises questions on the pathophysiology of the skeletal muscle changes in HSP patients and more generally in spastic patients.
SOURCE: Eur J Phys Rehabil Med. 2017 Mar 6. doi: 10.23736/S1973-9087.17.04513-0. [Epub ahead of print] PMID: 28264543
Sequential bilateral complete rupture of the rectus femoris muscle in a patient with hereditary spastic paraplegia.
A UK study has found that shared reading, where small groups (2-12 people) come together weekly to read literature — short stories, novels and poetry — together aloud, helped people with chronic pain recall and express diverse painful life experiences with a positive therapeutic effect.
A study conducted by researchers from the University of Liverpool, The Reader and the Royal Liverpool University Hospitals Trust, and funded by the British Academy, has found that shared reading (SR) can be a useful therapy for people with chronic pain.
The study, led by Dr Josie Billington from the University’s Centre for Research into Reading into Reading, Literature and Society (CRILS) and recently published in the BMJ Journal for Medical Humanities, compared Shared Reading (SR) — a literature-based intervention developed by national charity The Reader — to Cognitive Behavioural Therapy (CBT) to help deal with chronic pain.
Chronic pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. It is pain that persists for more than six months.
Usually pain is picked up by specialised cells in your body, and impulses are sent through the nervous system to the brain. What happens in people with chronic pain, however, is that other nerves are recruited into this ‘pain’ pathway which start to fire off messages to the brain when there is no physical stimulus or damage. But the body can ‘unjoin’ again. Nerve blockers (drugs) are one way; Cognitive Behavioural Therapy (CBT) is another — by getting the brain to send new messages back to the body
Cognitive Behavioural Therapy
CBT is a talking therapy that can help you manage your problems by changing the way you think and behave. It’s most commonly used to treat anxiety and depression, but can be useful for other mental and physical health problems.
The current evidence base in respect of chronic pain supports the use of standard psychological interventions, CBT in particular. CBT’s benefits, while useful are shown by recent research to be both limited and short-term.
Shared Reading is used in a range of environments that have similarities with chronic pain, in that the conditions involved can often be chronic and unsolvable, as in the case of dementia, prisons (people locked in, life halted and future inevitably affected by baggage of past), and severe mental illness (with recurring episodes).
The model is based on small groups (2-12 people) coming together weekly to read literature — short stories, novels and poetry — together aloud. The reading material ranges across genres and period, and is chosen for its intrinsic interest, not pre-selected with a particular ‘condition’ in mind.
Validating experiences
Regular pauses are taken to encourage participants to reflect on what is being read, on the thoughts or memories the book or poem has stirred, or on how the reading matter relates to their own lives.
Group members participate voluntarily, usually in relation to what is happening in the text itself, and what may be happening within themselves as individuals (personal feelings and thoughts, memories and experiences), responding to the shared presence of the text within social group discussion.
CBT allowed participants to exchange personal histories of living with chronic pain in ways that validated their experience. However, in CBT, participants focused exclusively on their pain with ‘no thematic deviation’.
In SR, by contrast, the literature was a trigger to recall and expression of diverse life experiences — of work, childhood, family members, relationships — related to the entire life-span, not merely the time-period affected by pain, or the time-period pre-pain as contrasted with life in the present. This in itself has a potentially therapeutic effect in helping to recover a whole person, not just an ill one.
Valuable
As part of the study participants with severe chronic pain symptoms were recruited by the pain clinic at Broadgreen NHS Hospital Trust having given informed consent. A 5-week CBT group and a 22-week SR group for chronic pain patients ran in parallel, with CBT group-members joining the SR group after the completion of CBT.
The study found that CBT showed evidence of participants ‘managing’ emotions by means of systematic techniques, where Shared Reading (SR) turned passive experience of suffering emotion into articulate contemplation of painful concerns.
Dr Josie Billington, Deputy Researcher, Centre for Research into Reading, said: “Our study indicated that shared reading could potentially be an alternative to CBT in bringing into conscious awareness areas of emotional pain otherwise passively suffered by chronic pain patients.
“The encouragement of greater confrontation and tolerance of emotional difficulty that Sharing Reading provides makes it valuable as a longer-term follow-up or adjunct to CBT’s concentration on short-term management of emotion.”
An HSPer in England diagnosed with SPG11 HSP at age 19, has gained the Duke of Edinburgh Gold award. 24-year-old Tim Croydon was praised for his courage, attitude and determination in taking on the different challenging components that make up the gold award program.
A young man who was diagnosed with a rare disability after gaining a silver Duke of Edinburgh Award has showcased his determination by achieving gold.
Tim Croydon, 24, of Flempton, has to use a wheelchair due to the rare and complex degenerative neurological condition Hereditary Spastic Paraplegia Type SPG 11. He was having problems walking while completing his silver Duke of Edinburgh Award aged 17 and was diagnosed two years later. This didn’t deter him from embarking on the gold award and, following a specialist expedition, he was presented with the accolade by adventurer Oliver Hicks at St James’s Palace, where he was congratulated by The Duke of Edinburgh. His mum Hilary said: “We are very proud of Tim because he has never wavered in his determination to achieve the gold award. “The D of E team were very flexible in their approach to disability, while ensuring that the expeditions were challenging. Disability is not a barrier to the D of E gold award.”
“The D of E team were very flexible in their approach to disability, while ensuring that the expeditions were challenging. Disability is not a barrier to the D of E gold award.” Tim, who attended King Edward VI School, worked through the various elements of the award and arranged a specialist expedition through the Bendrigg Trust charity. The expedition in the Lake District included canoeing and the use of a power chair.
He said: “I volunteered with the youth club at Fornham St Martin and I played with Bury Bombers Wheelchair Basketball Club for the sport section. I’ve enjoyed everything I’ve done for the awards but especially canoeing in the Lake District and getting to know new people.”
SOURCE: Bury Free Press 8:00 Saturday 25 March 2017 http://www.buryfreepress.co.uk/news/determined-tim-who-was-diagnosed-with-rare-disability-achieves-gold-duke-of-edinburgh-award-1-7882431
Determined Tim who was diagnosed with rare disability achieves gold Duke of Edinburgh Award
The message is clear – participation in adapted sports for people with mobility limitations delivers multiple advantages.
. . .
This Canadian study showed that people with mobility limitations playing adapted team or individual sports and people without such limitations have a similar quality of life.
Participation in adapted sports was identified as having positive effects on self-esteem, self-efficacy, sense of belonging, participation in meaningful activities, society’s attitude towards people with mobility limitations, and physical well-being.
.
. . .
Learn more about adapted sports and what is available around the country:
Occupations, including physical activity, are a strong determinant of health. However, mobility limitations can restrict opportunities to perform these occupations, which may affect quality of life. Some people will turn to adapted sports to meet their need to be involved in occupations. Little is known, however, about how participation in adapted sports affects the quality of life of people with mobility limitations. This study thus aimed to explore the influence of adapted sports on quality of life in adult wheelchair users.
. . .
METHODS:
A mixed-method sequential explanatory design was used, including a quantitative and a qualitative component with a clinical research design. A total of 34 wheelchair users aged 18 to 62, who regularly played adapted sports, completed the Quality of Life Index (/30). Their scores were compared to those obtained by people of similar age without limitations (general population). Ten of the wheelchair users also participated in individual semi-structured interviews exploring their perceptions regarding how sports-related experiences affected their quality of life.
. . .
RESULTS:
The participants were 9 women and 25 men with paraplegia, the majority of whom worked and played an individual adapted sport (athletics, tennis or rugby) at the international or national level. People with mobility limitations who participated in adapted sports had a quality of life comparable to the group without limitations (21.9 ± 3.3 vs 22.3 ± 2.9 respectively), except for poorer family-related quality of life (21.0 ± 5.3 vs 24.1 ± 4.9 respectively). Based on the interviews, participants reported that the positive effect of adapted sports on the quality of life of people with mobility limitations operates mainly through the following: personal factors (behavior-related abilities and health), social participation (in general and through interpersonal relationships), and environmental factors (society’s perceptions and support from the environment). Some contextual factors, such as resources and the accessibility of organizations and training facilities, are important and contributed indirectly to quality of life. Negative aspects, such as performance-related stress and injury, also have an effect.
. . .
CONCLUSIONS:
People with mobility limitations playing adapted sports and people without limitations have a similar quality of life. Participation in adapted sports was identified as having positive effects on self-esteem, self-efficacy, sense of belonging, participation in meaningful activities, society’s attitude towards people with mobility limitations, and physical well-being. However, participants stated that this involvement, especially at higher levels, had a negative impact on their social life.
SOURCE:Health Qual Life Outcomes. 2017 Jan 25;15(1):22. doi: 10.1186/s12955-017-0597-9. PMID: 28122621 PMCID: PMC5264324 [PubMed – in process]
How does playing adapted sports affect quality of life of people with mobility limitations? Results from a mixed-method sequential explanatory study.
1 School of Rehabilitation, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 3001 12th Avenue North, Sherbrooke, QC, Canada.
2 Research Center on Aging, Centre intégré universitaire de santé et de services sociaux (CIUSSS) de l’Estrie, Sherbrooke, QC, Canada.
3 School of Rehabilitation, Faculty of Medicine and Health Sciences, Université de Sherbrooke, 3001 12th Avenue North, Sherbrooke, QC, Canada. Melanie.Levasseur@USherbrooke.ca.
4 Research Center on Aging, Centre intégré universitaire de santé et de services sociaux (CIUSSS) de l’Estrie, Sherbrooke, QC, Canada. Melanie.Levasseur@USherbrooke.ca.
This in-depth study of 22 HSPers and 19 unaffected people found that, when the legs and feet are warm, the speed and strength of raising the toes at push off when walking was significantly higher than when cold. The speed of nerve conduction was also faster when warm and spasticity significantly decreased.
BACKGROUND:
People with hereditary and spontaneous spastic paraparesis (HSSP) report that their legs are stiffer and walking is slower when their legs are cold.
OBJECTIVES:
This study explored the effects of prolonged superficial cooling and warming of the lower leg on walking speed and local measures of neuromuscular impairments.
METHODS:
This was a randomised pre- and post-intervention study of 22 HSSP participants and 19 matched healthy controls. On 2 separate occasions, one lower leg was cooled or warmed. Measurements included walking speed and measures of lower limb impairment: ankle movement, passive muscle stiffness, spasticity (stretch reflex size), amplitude and rate of force generation in dorsi- and plantarflexors and central and peripheral nerve conduction time/velocity.
increased power and speed at pushoff
RESULTS:
For both participants and controls, cooling decreased walking speed, especially for HSSP participants. For both groups, cooling decreased the dorsiflexor rate and amplitude of force generation and peripheral nerve conduction velocity and increased spasticity.
Warming increased dorsiflexor rate of force generation and nerve conduction velocity and decreased spasticity.
CONCLUSIONS:
Superficial cooling significantly reduced walking speed for people with HSSP. Temperature changes were associated with changes in neuromuscular impairments for both people with spastic paraparesis and controls. This study does not support the use of localised cooling in rehabilitation for people with spastic paraparesis as reported in other neurological conditions. Rehabilitation interventions that help prevent heat loss (insulation) or improve limb temperature via passive or active means, particularly when the legs and/or environment are cool, may benefit people with spastic paraparesis.
1 School of Health Professions, Faculty of Health and Human Sciences, Plymouth University, Devon PL6 8BH, United Kingdom. Electronic address: amanda.denton@plymouth.ac.uk.
2 School of Health Professions, Faculty of Health and Human Sciences, Plymouth University, Devon PL6 8BH, United Kingdom.
3 School of Computing, Electronics and Mathematics, Faculty of Science and Engineering Plymouth University, Devon PL6 8BH, United Kingdom.
Following on from an article in the Summer 2016 condition of the website on pain management http://www.hspersunite.org.au/severe-pain-and-hsp/here is a follow-up talking about pain and spasticity management without pills.
Often descriptions of HSP don’t mention pain, but given the HSP gait pattern, influenced by weak and spastic muscles, difficulty with balance, foot misuse and/or inappropriate spinal movement patterns, it doesn’t take too much imagination to appreciate that HSP can cause pain. Doctor prescribed painkillers offer relief for some but not for everyone or in every circumstance, and can be used safely only for relatively short periods.
Here is a webinar produced in October 2016 titled Pain and Spasticity Management Without Pills. It comes from the United Spinal Association. The two presenters are very knowledgeable and at the end of the webinar they offer their email addresses for those who have further questions.
This hour long webinar includes:
Time Topic
(min:sec)
6:00 Introduction and Objectives
8:00 Types of chronic pain
11:30 Types of spasticity
13:00 Types of treatment options
15:45 Alternative therapies
18:00 Coping strategies that help with pain
20:15 Acupuncture
22:00 Hypnosis
23:15 Cognitive Behavioural Therapy
25:00 TENS/MET
29:50 PENS (for deeper delivery)
31:30 IDDS (implanted drug delivery systems)
32:55 SCS (Spinal cord Stimulation)
34:30 Pain support groups
37:00 Alternatives (including 39:00 light therapy for increased circulation; 40:00 transcranial direct current stimulation)
42:45 Investigational devices (including whole body vibration for spasticity)
48:40 Considerations for pain/spasticity management
This webinar and the included additional resources offer a wealth of information on pain and spasticity management. There may not be one easy answer for getting a handle on your pain but you can learn of options and be much better informed if you’re working with a doctor or pain management specialist. If working independently, this information will help you gain some control of your pain and make some improvements.
With plans underway to implement clinical trials to test a drug treatment for SPG4 HSP, the big question is “will the drug work in people?” If it does, another question arises “can people afford the drug?”.
The cost of making many drugs contributes little to market pricing. What can make drugs prohibitively expensive is in recouping costs of research and clinical trials, a commercial profit margin, and small market size where rare diseases are concerned.
The International Rare Diseases Research Consortium (IRDiRC) recently commented:
In the World Health Organization Bulletin, an article addresses the future of funding access to orphan drugs. According to the article, European Medicines Agency recommended 89 different orphan medicinal products for marketing authorisation in Europe, by the end of 2015. However, many of these drugs are heavily priced to compensate for the research cost and lower market size.
According to the authors, while pricing and reimbursement is negotiated individually with pharmaceutical companies in each Member State in Europe, this is changing. Two European countries – Belgium and the Netherlands – have teamed up to negotiate the pricing of orphan drugs with pharmaceutical companies. A pilot project was scheduled to begin in 2016. Since the agreement was signed, several pharmaceutical companies have declared their willingness to cooperate in the pilot project. In September 2015, the Grand Duchy of Luxemburg joined the Belgium–Netherlands project and the health ministers of other EU countries have demonstrated their interest in the project.
The authors note that “this collaboration has a potential triple benefit: (i) for health system sustainability; (ii) for pharmaceutical companies; and (iii) for patients having a rare disease.”
