There is a great deal of information about ‘fall prevention’ and risk minimisation strategies e.g. remove throw rugs, increase lighting, install grab bars and rails, but there’s very little out there on the topic of ‘fall recovery’.
People seeking solutions for how to get up after a fall are usually taught a ‘basic fall recovery technique’ or informed that there are a few equipment options available for purchase. Unfortunately many people can’t perform the basic fall recovery technique and most people feel the equipment designed for fall recovery is too expensive – and the truth is that even if they did own it, it is unlikely it would be sitting immediately beside where the fall occurs.
. . .
From Occupational Therapist Rhonda Bonecutter, “I had a small epiphany while sitting in my living room a few weeks ago and realized there are actually many things that people can do to successfully get up from the floor. I made a short video showing these ideas. In under 10 minutes it shows 10 different fall recovery techniques. Now, obviously each person watching it will have different strengths and weaknesses so all of the techniques won’t work for everyone, but the most important thing people will come away with is how to creatively ‘think outside the box’ to better ensure they will find a way to get up (or get help) in minutes.”
Robot-assisted gait training has been investigated for restoring walking through activity-dependent neuroplasticity in persons with various neurologic disorders.
This case report presents the outcome of robot-assisted gait training combined with physiotherapy in a 28-year-old man with pure hereditary spastic paraplegia.
The patient participated in 25 training sessions over 6 weeks. Improvements were noted in his walking speed and balance after the training, but gait kinematics and kinetics showed no remarkable changes before and after the training.
Robot-assisted gait training may be useful for providing intensive gait training in patients with hereditary spastic paraplegia because the patient’s walking speed and balance improved after the training.
1 Department of Rehabilitation Medicine, Seoul National University College of Medicine, Seoul National University Hospital, 101 Daehak-ro, Jongno-gu, Seoul 110-744, Republic of Korea.
2 Department of Rehabilitation Medicine, Seoul National University College of Medicine, Seoul National University Hospital, 101 Daehak-ro, Jongno-gu, Seoul 110-744, Republic of Korea. Electronic address: keewonkimm.d@gmail.com.
Walking speed was improved and calf muscle tone reduced in a study of 15 HSPers who received Botox injections and did daily stretching exercises for the 18 weeks following. Muscle strength was preserved and balance was unaffected.
Objective: Although calf muscle spasticity is often treated with botulinum toxin type-A, the effects on balance and gait are ambiguous. Hereditary spastic paraplegia is characterized by progressive spasticity and relatively mild muscle weakness of the lower limbs. It is therefore a good model to evaluate the functional effects of botulinum toxin type-A.
Design: Explorative pre-post intervention study.
Subjects: Fifteen subjects with pure hereditary spastic paraplegia.
Methods: Patients with symptomatic calf muscle spasticity and preserved calf muscle strength received botulinum toxin type-A injections in each triceps surae (Dysport®, 500-750 MU) followed by daily stretching exercises (18 weeks). Before intervention (T0), and 4 (T1) and 18 (T2) weeks thereafter, gait, balance, motor selectivity, calf muscle tone and strength were tested.
Results: Mean comfortable gait velocity increased from T0 (0.90 m/s (standard deviation (SD) 0.18)) to T1 (0.98 m/s (SD 0.20)), which effect persisted at T2, whereas balance and other functional measures remained unchanged. Calf muscle tone declined from T0 (median 2; range 1-2) to T1 (median 0; range 0-1), which effect partially persisted at T2 (median 1; range 0-2). Calf muscle strength did not change
Conclusion: Botulinum toxin type-A treatment and subsequent muscle stretching of the calves improved comfortable gait velocity and reduced muscle tone in patients with hereditary spastic paraplegia, while preserving muscle strength. Balance remained unaffected.
SOURCE:J Rehabil Med. 2014 Oct 16. doi: 10.2340/16501977-1909. [Epub ahead of print] PMID: 25325386 [PubMed – as supplied by publisher]
Functional effects of botulinum toxin type-A treatment and subsequent stretching of spastic calf muscles: A study in patients with hereditary spastic paraplegia.
1Department of Rehabilitation, Centre for Evidence Based Practice and Donders Institute for Brain, Cognition, and Behaviour, Radboud, Radboud University Medical Centre, The Netherlands.
‘Toilet talk’, mobility aids for kids, adults and more…
The ‘Squatty Potty’ – helps with more natural elimination
Squatty Potty
We could start with a joke about this product, and there are more than a few on their own website, but Squatty Potty seems to be a serious product. It’s recommended by doctors, not just for people with elimination problems but for everyone.
The case made is that humans are meant to poo in a squatting position, not a sitting position. The Squatty Potty offers a better bathroom experience by aligning the colon in a natural angle for faster, more effective colon evacuation. The Squatty Potty is designed to help assume the squatting position, which helps alleviate suffering from hemorrhoids, constipation, colon disease and pelvic floor issues. When not in use it tucks in close to your toilet.
Costing 60–$100, find out where you can buy online by Googling <squatty potty australia buy>
‘Upsee’ – helps train kids with motor impairment to stand and walk
Upsee for walking training
This new device http://www.fireflyfriends.com/upsee was created by the mother of a boy with Cerebral Palsy. She said, “When my son was two years old, I was told by medical professionals that he didn’t know what his legs are and has no consciousness of them. That was an incredibly difficult thing for a mother to hear. I started to walk him day after day, which was a very strenuous task for both of us. Out of my pain and desperation came the idea for the Upsee and I’m delighted to see it come to fruition.”
The Upsee allows infants and small children to stand and achieve repetitive walking training with the support of an adult. It includes a harness for the child, which attaches to a belt worn by an adult, and specially-engineered sandals that allow the parent and child to step simultaneously, leaving their hands free for play and other tasks.
Costing around $500, go here for more information or purchase.
Tek Robotic Mobilization Device
The TEK device
This motorised standing device, similar to the Segway scooter but designed for people with mobility problems, is now commercially available in Australia.
About this device, the inventors say: “At Matia Robotics, we created the Tek Robotic Mobilization Device not as a wheelchair alternative, but as a brand new mobility platform that completely reimagines the way individuals with paraplegia and other walking disabilities are able to move in the world. The ability to independently and safely sit, stand, and navigate environments that were once inaccessible, is now possible, safe, and available soon by reservation.
It works like a wheelchair but is less than half the size of the smallest wheelchair, leaving hands free for daily activities. It allows a hands-free sit-to-stand motion with a very small footprint and is boarded from the back, allowing for independent and safer transfers.”
Matia Robotics is a team of expert inventors and engineers, dedicated to the creation of innovative robotic mobility devices. Since our team first came together in 2006, our goal has always been to develop technology that will help people—specifically people with walking disabilities. We designed the Tek RMD to add more freedom to the lives of individuals with paralysis, allowing them to live in places not designed for them, and to move more independently in the world.
After years of development, planning, and testing, the Tek RMD is our first product to hit the market. We debuted the Tek RMD in 2012, and with the buzz we received from around the world, we decided to take our Tek RMD to the global marketplace. Our goal remains to improve the health, wellness, and sense of independence for as many people as we can reach.
For more information on the device, including video, and how to get one in Australia, go to: http://pushmobility.com.au/catalogue/tek. The cost is around $24,000 and includes a face-to-face consultation for measurement and custom sizing of the unit, free delivery and 5 hours of personal training time to learn to use the device. Units can be inspected and trialled in Adelaide, Melbourne and Sydney currently, and possibly other locations on request.
Relaxation device – the Chi machine
Chi machine
The Chi machine cradles the lower legs of the user who is lying down and employs a reciprocating side-to-side motion that rocks the legs and the body back and forth. There are claims that a chi machine can relieve muscular tension, relieve vertebral joint pressure, promote a sense of well being, improve lymph flow and promote deep relaxation.
using the machine
Clinical trials in 2000 in collaboration with Flinders University in Adelaide showed improvement for patients with secondary lymphoedema and venous oedema in the legs (think swollen legs, feet and ankles). Might the Chi Machine be helpful for HSPers?
Youtube.com has various videos showing Chi Machine use, comparison of models, reviews, etc. Various brands of Chi Machines are available at prices ranging from less than 100 dollars (Gumtree.com) to several hundred dollars. Here is an Australian website with information on these machines.
Here is a report from an HSP community member on her use of a chi machine:
“The machine I have is called a Zen Chi machine. I use it twice a day for 15 minutes each, in the morning and before I go to bed. If some HSPers feel they probably can’t lie directly on the floor because of their backs due to stiffness/lordosis, I found once I got started it wasn’t a problem, seemed to stretch my back and then after I have finished I do more stretching for my back which feels great.
The reason I use it before bed, I found it relaxes the muscles and has resulted in a profound decrease in restless leg syndrome/clonus during the night. It has been wonderful because the restless legs nearly drove me insane and with the help I sleep so much better. I don’t get up off the floor after using it feeling that my muscles are more relaxed and I can walk better but my whole body tingles and feels amazing and feel its stimulating my muscles like I’ve been on a 2km walk and mentally that makes me feel better. People will probably have different results based on the level of their HSP symptoms, but I love it and honestly would not be without it. Make sure you buy woollen ankle covers with your machine because you really need them for comfort, and not all machines come with them included.”
Jonathan Marsden, a UK Professor, oversaw this review. He is a global authority on spasticity and its management, and has studied HSP for many years.
Jonathan Marsden
Here are some of the review’s highlights:
spasticity is difficult to manage and requires a collaborative approach involving multiple disciplines – doctors, physiotherapists, occupational therapists, orthotists, nurses and wheelchair engineers
the evidence for both drug and non-drug treatments of spasticity is limited
determining the effectiveness of various treatments of spasticity requires more research
referral to a rehabilitation specialist should be considered if oral anti-spasticity drugs don’t work well or aren’t tolerated; if the spasticity affects posture mobility and care; or if the spasticity is associated with considerable pain and discomfort
there is currently little evidence for the effectiveness of several physical modalities including extracorporeal shock wave therapy, whole-body vibration, transcutaneous electrical stimulation, repetitive transcranial magnetic stimulation, transcranial direct current stimulation and electromagnetic therapy
reduction of spasticity often unmasks underlying weakness. All anti-spasticity drugs cause muscle weakness. There is a trade-off between spasticity and weakness, as spasticity can provide some measure of postural stability and function
there is currently limited evidence for the efficacy of oral anti-spasticity drugs
oral anti-spasticity drugs should be started at a small dose and increased in small increments. Their effectiveness for an individual should be periodically reviewed and tapered off and stopped if not effective
the timing of taking oral anti-spasticity drugs and the dose should be tailored to the individual and to their lifestyle e.g. if walking, lower doses during daytime; the dose before bedtime and straight after waking up to reduce high tone
oral cannabis extracts do not change objective measures of spasticity
intrathecal baclofen, where a small precise dose is accurately delivered, results in a significant reduction in spasticity for carefully selected and screened patients who do not respond to other forms of treatment
phenol injections can be effective in treating spasticity in large powerful muscle groups close to the trunk such as the abductors of the thighs.
SOURCE: BMJ. 2014 Aug 5;349:g4737. doi: 10.1136/bmj.g4737.
The management of spasticity in adults.
Nair KP1, Marsden J2
1Department of Neurology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK siva.nair@sth.nhs.uk.
2School of Health Professions, Faculty of Health and Human Sciences, University of Plymouth, Plymouth, UK.
Here are 2 stories… the 1st to encourage new or existing HSP athletes, and the 2nd for inspiration.
Challenged Athletes Foundation
. . .
The Challenged Athletes Foundation (CAF) is a world leader in helping individuals with physical challenges get involved with sports. Their mission is to give those with the desire to live active, athletic lifestyles every opportunity to compete in the sports they love.
Although U.S. based, they gave grants to athletes from 29 countries in the last year alone.
Access for Athletes — the Challenged Athletes Foundation’s® (CAF) flagship program — steps in where rehabilitation and health insurance end by providing funding grants for equipment such as sports wheelchairs, handcycles, mono skis and sports prosthetics, and resources for training and competition expenses directly to physically challenged individuals.
Access for Athletes surmounts financial impediments to participation in sports, ensuring that challenged athletes are not left on the sidelines because they can’t afford expensive equipment or training costs. CAF believes participating in sports not only increases challenged athletes’ physical fitness and activity levels, but also enhances their confidence and self-esteem.
A US HSPer who’s been doing “running events” on his regular wheelchair recently purchased a race wheelchair and CAF is providing money to buy special wheels for the chair.
You need to apply online between 1 September and 1 December 2014 for a grant. Grant awards will be announced in early April 2015. Read the FAQs
HSPer competing at the World Equestrian Games
Rebecca
Rebecca Hart is an inspiration to many. Para-equestrian champion Rebecca Hart of the USA proves that having a disability doesn’t derail your dreams. The 6 time US national champion has also placed 4th at the Para-Olympics in both 2008 and 2012.
Findings of the University of Melbourne gait study
Walking patterns of children with HSP described.
Physiotherapy researcher Brooke Adair
Study aim
The aim of this study was to describe how children with hereditary spastic paraplegia (HSP) walk. In particular, the study aimed to investigate whether children with HSP showed particular patterns of movement in their legs and trunk when they were walking.
Methodology
Walking patterns were assessed from three different views, including the sagittal plane (the movements seen with a side-on view), the coronal plane (the movements seen when watching a person walking towards and away from you) and the transverse plane (the movements seen if you were to look directly down upon a person from above). All of the movements were compared to those seen in a group of typically developing children who did not have HSP.
Results
Eleven children participated in the study, with ages ranging from 7-18 years. As expected, the walking patterns of children with HSP varied from the group of children without HSP.
. . .
In the sagittal (side-on) plane, each joint or body segment moved more than in the group of children without HSP. For example, children with HSP leaned forward and backwards more at their trunk and also tended to twist their pelvis backwards and forwards.
In the coronal (front and back) plane, the movements of the trunk, pelvis and hips were also quite different. In particular, children with HSP tended to lean more side-to-side than children without HSP. Increased amounts of movement were also noted at the pelvis and hips, indicating that the pelvis and hips tended to drop to one side when the children with HSP were stepping.
Some of these results about the movements of the hips, knees and ankles agree with the results published from other studies. The information about the movements of the trunk and pelvis in the coronal and transverse planes is new and has not yet been investigated by other researchers.
Conclusions
The results from this study are important as they confirm that some children with HSP exhibit more movement at the trunk and legs when walking when compared to children without HSP. These movements may occur as a result of muscle weakness or to compensate for other difficulties while walking, such as catching their toes when stepping. Now that the walking patterns have been confirmed, further research is needed to investigate why these movements occur.
Important: The results of this study were presented at a meeting. The data and conclusions should be considered as preliminary until published in a peer-reviewed journal.
PHILADELPHIA — A drug that aids walking in people with multiple sclerosis may have a similar benefit in those with a rare form of paraplegia, a researcher said here.
In a small, proof-of-concept study of dalfampridine (Ampyra),* 50% of patients with hereditary spastic paraplegia improved on several measures of walking ability, according to Nicolas Collongues, MD, PhD, of the University of Strasbourg Hospital in Strasbourg, France.
*This drug is called Fampyra or Fampradine in Australia.
The improvements were clinically meaningful as well as statistically significant, Collongues reported at the annual meeting here of the American Academy of Neurology.
“Patients all say they can walk with more facility and can climb stairs more easily,” Collongues told MedPage Today. “This is a real clinical improvement.”
But because of the rarity of the disease – about three people per 100,000 — large clinical trials will be difficult to organize, which might rule out formal approval to use the drug in patients, Collongues said.
He added that he and colleagues are trying to organize a larger study, using a cross-over design since a standard parallel group design would be impossible.
On the other hand, the drug is approved for use in multiple sclerosis, which opens the door to off-label use in hereditary spastic paraplegia, commented Babar Khohkar, MD, of Yale University, who was not part of the study but who moderated a session at which it was presented.
Large studies are easy to do in multiple sclerosis, he told MedPage Today, but “in this population you are probably going to have to do studies” like the one by Collongues and colleagues.
But, he added, “if I had a patient, and I saw these data, I would now consider (dalfampridine) off-label.” The question, he noted, is whether insurers would pay for it.
Collongues and colleagues enrolled 12 patients with the condition and gave them the drug — at 10 milligrams twice a day — for 15 days.
Patients were 52, on average, and had been diagnosed with the disease for nearly 16 years.
Before and after the drug treatment, the researchers tested patients’ ability to walk using three measures — the Timed-25-Foot Walk Test, the Spastic Paraplegia Rating Scale, and the 12-item Multiple Sclerosis Walking Scale.
They defined a responder as a patient whose score improved by at last 20% on any of the three.
In fact, Collongues reported, six of the 12 showed significant improvement on all three scales. Specifically, the responders:
Had an average baseline score on the paraplegia scale of 21, which fell to 17.3 after treatment. The 20.7% difference was significant at P=0.03.
Had an average baseline time of the 25-foot walk of 17.5 seconds, which fell to 13.5. The 21.1% improvement was also significant at P=0.03.
Had an average baseline score on the MS test 69.5, which fell to 48.3 after treatment. The 31.6% improvement was significant, again, at P=0.03.
Collongues reported that the drug was well tolerated and would likely be without significant adverse effects for an even longer treatment period.
“If it is well tolerated for 15 days, it is well tolerated after,” he said.
The issue is important, he noted, because there is almost no carry-over effect: “If you stop the drug,” he said, “one day later there is no effect.”
One in three adults over the age of 65 fall every year.
2/3 will fall again within 6 months.
95% of hip fractures are causes by falls.
Falls are the leading cause of death in the 65+ age group and the most common cause of hospital admission.
Over 70% of emergency room visits of people 65+ years old, were related to falls.
Falls often and quickly lead to the loss of independence.
Who’s at risk of falling?
women more than men
people who are older
people who live alone
people who lack physical activity
people who have fallen before
people with disabilities, gait and/or balance problems, ambulatory or walking device or wheelchairs
people who take multiple medications
those with urinary incontinence
reduced vision is a hazard and prescription drugs can cause vision problems.
hearing loss, even mild hearing loss is a factor.
There’s no debate. HSPers fall more than average so it’s important that we do what we can to minimize our falls – not just because of the embarrassment of falling, but because we can get very seriously hurt (hospital emergency room visits!) and that can very negatively impact our lives (loss of independence!) and the lives of our loved ones.
Another factor to consider is that those who understand their increased risk of falling often experience fear of falling. Unfortunately this can further reduce physical activity, making falls more likely and leading to increased isolation. Understanding the negative impact of this might help motivate people to set realistic goals for increasing activity.
Research shows that educational materials alone are not enough. More needs to be done! What you can do?
Get moving – exercise and increase your activity. There is proof! Exercise programs containing balance and strength training, and specifically Tai Chi are helpful. While we’ve always recommended sessions with a trained physiotherapist, there are simple exercises below (under Evidence Based Programs) designed to reduce falls in elderly. A very serious issue HSPers should think about is the risk of falling backwards. Physiotherapists have recommended HSPers spend time safely and slowly walking backwards (along a wall with one hand on the wall or on a treadmill) and elderly are being encouraged to do the same. (see Otago website below.)
Wear the right shoes.
Talk with your physiotherapist or occupational therapist about falls, how to fall and how to get up again.
Discuss your medications with your pharmacist and falling issues with your doctor.
Get your vision and hearing checked
Check your home for risks – and eliminate rugs, power cords and other obstacles. Add grab bars in the bathroom and lighting on stairs. You’ll get more ideas of ways to make your home safer in this Home Fall Prevention Checklist for Older Adults.
For Wheelchair and Scooter Users:
Consider the way you transfer, and share that info with others
Lock when you transfer
Turn off power when not in use
Don’t remove features (like anti-tip gear)
Don’t add things that throw the weight off (like backpacks)
Otago is a muscle strengthening and balance retraining program that can reduce falls. It is delivered at home by a physiotherapist through seven home visits over one year. The New Zealand Falls Prevention Research Group developed and tested the program. The rationale behind Otago is that while muscle strength, flexibility, balance, and reaction time are risk factors for falls, they can easily be modified. Always check with your primary care provider and physiotherapist prior to beginning any of the Otago strength, balance, and walking exercises.
The US’s National Center on Health, Physical Activity and Disability (NCHPAD) is positioned to effect change in health promotion/obesity management among people with disabilities through its existing 13-year history of providing advocacy, services and programs to numerous organizations and people. For free, web-based personalized fitness programs for all sorts of debility levels, they have a ton of good information on their website, including 14 week fitness programs here:
Various fall prevention programs are offered throughout Australia. A few are listed below. Please verify qualification first, as some programs have age and physical restrictions. You can also inquire with your local hospitals and community centers for courses.
Stepping-On was developed in NSW and is considered to be one of the most effective falls prevention programs available, giving people the confidence to undertake their everyday activities safely. http://www.activeandhealthy.nsw.gov.au/program_types
Repositioning the catheter tip of an ineffective baclofen pump in the spine of an HSP patient resulted in well-controlled spasticity.
Background:
Intrathecal baclofen infusion is an established method for the treatment of generalized and disabling spasticity. The most frequent technical problems are due to catheter /pump disconnections, but diagnosis of dysfunction may be difficult.
Case report:
We report here the case of a 53-year-old woman with spastic paraplegia treated with intrathecal baclofen. Spasticity remained uncontrolled despite a gradual increase in baclofen dosage. On plain radiographs the distal end of the catheter was found to be pointing downwards with the catheter tip at level L5 and no apparent disconnection or failure. Indium111 diethylenetriamine penta-acetic acid (DTPA) scintigraphy combined with computed tomography revealed that the activity of the radioisotope was highest next to the first sacral vertebra and that there was no leakage. Radioisotope activity above the lumbar level was very low. The catheter tip was therefore repositioned to level T7.
One month later, spasticity was well controlled and a second scintigraphy confirmed high activity of intrathecal radioisotope up to the basal cisterns.
Discussion:
The combination of Indium111 DTPA scinti-graphy with computed tomography allows anatomical and functional investigation of intrathecal drug administration. In this case report this approach showed that the inefficiency of intrathecal baclofen was due to the caudal orientation of the catheter.
SOURCE:J Rehabil Med. 2014 Apr 8. doi: 10.2340/16501977-1813. [Epub ahead of print] PMID: 24715222 [PubMed – as supplied by publisher]
Isotopic scintigraphy combined with computed tomography: A useful method for investigating inefficiency of intrathecal baclofen.
