Clinical and genetic diagnostic markers well-defined
A treatable autosomal recessive disease, Cerebrotendinous xanthomatosis, is commonly misdiagnosed as HSP or MS, despite some distinctive clinical symptoms. Early recognition and treatment may prevent irreversible neurological damage. Next-generation gene testing is a valuable adjunct in identifying this condition.
Cerebrotendinous xanthomatosis is an autosomal recessive disorder of bile acid metabolism causing a range of progressive neurological symptoms.
Even in the presence of the classical triad of neurological dysfunction, tendon xanthoma and early onset cataracts, the diagnosis is often missed. It can mimic more common conditions such as hereditary spastic paraparesis or multiple sclerosis, particularly if the phenotype is spinal xanthomatosis where the disease causes a spastic paraplegia.
Early recognition and treatment with chenodeoxycholic acid may prevent irreversible neurological damage.
The introduction of next-generation sequencing to screen for a large number of genetic disorders associated with progressive spastic paraparesis will allow earlier identification and treatment of these patients and their families, and will particularly help in atypical cases such as the patient described here.
SOURCE:Pract Neurol. 2015 Apr 10. pii: practneurol-2015-001117. doi: 10.1136/practneurol-2015-001117. [Epub ahead of print] PMID: 25862734 [PubMed – as supplied by publisher]
Diagnosis of spinal xanthomatosis by next-generation sequencing: identifying a rare, treatable mimic of hereditary spastic paraparesis.
Living with HSP can be tough and stressful. The stress takes its toll and can make things even harder. Research reveals that stress damages the brain, and reducing stress can be highly beneficial. Doing something fun and laughing, socializing, exercising and meditating are all accessible ways of reducing stress. Several studies have documented, through brain scans and blood work, the beneficial role that meditation can play in managing stress.
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Meditation, the practice of being more attentive, present and engaged in each moment, also known as mindfulness, has been studied for its ability to lessen the damaging effects of stress and protect the parts of the brain that are vulnerable to cognitive decline.
An article published in the April/May 2015 edition of NeurologyNow reviews studies on stress and the benefits especially of both meditation and exercise. You can download the full article.
The importance of stress reduction for people with a neurological condition is highlighted. There is a free online course http://palousemindfulness.com/ referenced in the article with explanations and instructions for the beginning through advanced meditator, including the science behind meditation.
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Many studies have also shown that exercise can protect the brain against stress in a variety of conditions. Other studies corroborate the finding that exercise increases gray matter density in brain regions associated with high-level cognitive functioning. The research indicates, therefore, that a less-stressed brain—whether as a result of exercise or other stress-reducing techniques—can think and carry out tasks more efficiently.
Baclofen was used via an implanted (intrathecal) pump to treat mild spasticity associated with HSP that was causing walking difficulty. Oral medications to treat the spasticity had been unsuccessful. The dosage of baclofen from the pump was closely monitored and regulated, and a point found where spasticity was decreased, but muscle strength was maintained, leading the patient to be able to walk at double the speed he could previously.
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OBJECTIVE:
To show the benefits of a continuous ITB test-infusion in a patient with HSP with an improved gait performance after ITB pump-implantation DESIGN: Case report SETTING: Clinical setting PARTICIPANT: A 49-year old male, with hereditary spastic paraplegia (HSP), experiencing progressive walking difficulties due to spasticity of the lower extremities, which did not respond to oral spasmolytics.
INTERVENTIONS:
Prolonged continuous ITB test-infusion, which started low and was increased gradually, to provide a stable dose of ITB over a prolonged period of time, providing the patient enough time to experience the effects of ITB, because he feared functional loss due to the ITB-therapy.
MAIN OUTCOME MEASURES:
Modified Ashworth Scale (MAS), EMG, muscle strength, Timed Up and Go tests and a Patient Global Impression of Change were performed as outcome measures. Gait performance before and after ITB pump-implantation was assessed in a motion lab.
RESULTS:
During the test-infusion ITB dose was gradually increased to a continuous dose of 108 μg/day. This dose caused a decreased spasticity, with maintenance of the muscle strength. After pump-implantation gait performance was improved resulting in an increased knee flexion during the loading response and a doubled walking speed as compared to baseline.
CONCLUSION:
HSP patients suffering from mild spasticity, not responding to oral spasmolytics should receive a continuous ITB test-infusion, to provide the patient with enough time to experience the delicate balance between spasmolysis and muscle strength. ITB-therapy has shown to be a suitable therapy to improve gait performance in HSP patients.
SOURCE: Arch Phys Med Rehabil. 2015 Jan 24. pii: S0003-9993(15)00043-X. doi: 10.1016/j.apmr.2015.01.012. [Epub ahead of print]
Improved gait performance in a patient with hereditary spastic paraplegia after a continuous intrathecal baclofen test-infusion and subsequent pump-implantation; a case report.
1,3Department of Neurosurgery, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands. Electronic address: h.w.heetla@umcg.nl.
2Department of Rehabilitation, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
4Department of Neurology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
Pelvic floor spasticity can lead to bowel and bladder problems, pelvic pain and sexual dysfunction. Physiotherapy can lead to a significant improvement in these problems and a better quality of life.
Background
Pelvic floor (PF) hypertonic disorders are a group of conditions that present with muscular hypertonia or spasticity, resulting in a diminished capacity to isolate, contract, and relax the PF. Their presentation includes voiding and sexual dysfunctions, pelvic pain, and constipation. Various factors are associated, such as complicated vaginal birth, muscular injury, scar tissue formation, and neuropathies.
Study Design
The case of a single patient will be presented, together with the management strategies employed.
Case Description
A woman with hereditary spastic paraparesis and a history of muscle spasticity and urinary and fecal complaints since childhood. She presented to this institution seeking treatment for pelvic pain, pain during intercourse, constipation, and micturition (urination) problems. A physical therapy protocol was developed, with the trial of several treatment modalities.
Outcome
After some failed attempts, perineal and pelvic floor stretching proved to be very efficacious therapies for this patient’s complaint, leading to improved pain during intercourse, constipation, pelvic pain, and urinary stream.
Discussion
PF spasticity can lead to severe disability and interfere with daily basic functions, such as micturition and evacuation. Physical therapy plays an essential role in the management of these patients and can lead to significant improvement in quality of life.
SOURCE:Case Rep Obstet Gynecol. 2014;2014:306028.Epub 2014 Nov 12.
Physical Therapy in the Management of Pelvic Floor Muscles Hypertonia in a Woman with Hereditary Spastic Paraplegia.
Ribeiro AM1, Ferreira CH2, Cristine Lemes Mateus-Vasconcelos E3, Moroni RM4, Brito LM5, Brito LG6. 1Rehabilitation Center of Hospital das Clínicas, Ribeirão Preto School of Medicine, University of São Paulo, 14049-900 Ribeirão Preto, SP, Brazil. 2Department of Biomechanics, Medicine and Rehabilitation of the Locomotor System, Ribeirão Preto School of Medicine, University of São Paulo, 14049-900 Ribeirão Preto, SP, Brazil. 3Rehabilitation Center of Hospital das Clínicas, Ribeirão Preto School of Medicine, University of São Paulo, 14049-900 Ribeirão Preto, SP, Brazil ; Barão de Mauá University Center, 14090-180 Ribeirão Preto, SP, Brazil. 4Department of Gynecology and Obstetrics, Ribeirão Preto School of Medicine, University of São Paulo, 14049-900 Ribeirão Preto, SP, Brazil. 5Federal University of Maranhão, 65080-805 São Luís, MA, Brazil. 6Rehabilitation Center of Hospital das Clínicas, Ribeirão Preto School of Medicine, University of São Paulo, 14049-900 Ribeirão Preto, SP, Brazil ; Department of Gynecology and Obstetrics, Ribeirão Preto School of Medicine, University of São Paulo, 14049-900 Ribeirão Preto, SP, Brazil.
from an article in Neurology Now by Stephanie Stephens.
. . .
Jerry Lewis did it right, but most of us don’t want to do it at all. Falling is no laughing matter. And people with neurological problems are at greater risk.
Even elderly patients with mild to moderate neurological impairments have a three times higher incidence of falls than people without neurological challenges, according to a 2013 study in the journal British Medical Journal Open.
In its 2008 guideline for assessing patients for risk of falls, the American Academy of Neurology cited increased risks for falls among people diagnosed with stroke, dementia, and gait and balance disorders. Patients with Parkinson’s disease, peripheral neuropathy, lower extremity weakness, sensory loss, and substantial vision loss also have a higher risk of falling, the authors of the guideline wrote.
The risk is not only associated with a neurological condition. According to the National Council on Aging, one in three people over the age of 65 in the United States fall unintentionally every year. Nearly 2.5 million non-fatal falls occurred among older adults in 2012, resulting in emergency department treatment and followed by hospital admissions for more than 722,000 of them. Nearly half of these people had not told their health care providers about the fall because they feared losing their independence.
Tips to prevent falls
The good news is that there are things you can do to reduce your risk for falls, whether you’ve already had an injury from a fall or just want to make sure you don’t fall in the first place.
“I remind patients and families that they really can prevent falls,” says Michael Okun, MD, a professor of neurology, neurosurgery, and neuroscience at the University of Florida College of Medicine’s Center for Movement Disorders and Neurorestoration. Dr. Okun, the national medical director of the National Parkinson Foundation, is also a Fellow of the American Academy of Neurology. But knowing when to ask for help is an important first step, he says.
Consult your doctor. When a person falls two or more times within a year or has an injury caused by a fall, they probably need an evaluation by a doctor, says geriatrician Jane Mahoney, MD, a professor of medicine at the University of Wisconsin School of Medicine and Public Health, who is also the director of the University of Wisconsin Health Mobility and Falls Clinic. “At the Wisconsin clinic, a team of professionals work together to identify the reasons why people are falling and then help them do what they need to in order to reduce their risk,” Dr. Mahoney says.
That may mean using a three-pronged cane or a walker when moving about in and outside the home.
The Wisconsin clinic sees people who have had a stroke, Parkinson’s disease, traumatic brain injury, and cognitive impairment. Other common causes for falls include vision problems, arthritis, and fluctuations in blood sugar caused by diabetes. High blood sugar can cause dehydration and lightheadedness. Low blood sugar can cause confusion and faintness.
“We also see falls related to poor judgment and poor safety awareness,” says Dr. Mahoney, “such as when people don’t use their cane or walker at home or out and about.”
. . .
Maintain good vision. Vision problems can increase your risk for falls. “If you can’t see, you can’t identify a fall risk and avoid it,” says Mindy Renfro, PhD, a licensed physical therapist at the University of Montana in Missoula. “Bifocals are especially troublesome when you look down at the floor and it’s out of focus.” Make sure your prescriptions for glasses and contacts are up-to-date, and schedule an annual eye check-up, she advises.
Exercise regularly. The old adage, “Use it or lose it,” holds true for preventing falls. “The more you keep physically active, the better. Play golf, walk, or go dancing—do whatever you can to stay fit,” Dr. Mahoney says. Most importantly, exercise can help people maintain their balance and strength. That advice is especially true for those with neurological conditions. At the 2014 American Stroke Association conference, for example, researchers reported that tai chi, a slow-moving, choreographed martial art, reduced falls among stroke survivors. A tai chi course that has been modified for people with balance problems is a good option, Dr. Mahoney says. The YMCA often offers these modified classes. The National Association of Area Agencies on Aging can also help identify programs near you.
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A physical therapist can also help develop an exercise plan for people with neurological conditions, especially those who are very frail or who were not active before. Exercising safely and with good form—and under professional supervision—is important, says Dr. Renfro.
Take stock of your medications. Certain medications can cause dizziness or drowsiness and can affect balance. Analgesics, sedatives, and antipsychotics, for example, can throw you off balance and increase your risk for falls. Make sure your pharmacist, primary care provider, and other specialists have a complete list of all your medicines, including over-the-counter medicines and supplements. Ask them to identify medications that may cause drowsiness and dizziness, and have them recommend the safest options for you.
Do a home assessment. Ask your doctor to recommend a physical or occupational therapist to evaluate your home for falling risks, sooner rather than later, Dr. Renfro suggests. “Many people say, ‘I don’t need to do this—my disease or condition isn’t that bad.’ If you wait until your condition gets ‘too bad,’ living at home may no longer be an option. I have seen too many cases where a person has a serious fall, and it is determined that their home is no longer safe for them to return to,” Dr. Renfro says.
“Don’t try to do the assessment by yourself,” she advises. There are plenty of do-it-yourself resources for adapting the home online. But a professional can help ensure that the grab bars in the hallways or bathrooms are properly placed and at the right height, that the floors have the right kind of non-skid surface, that the lighting is appropriate and well-placed, and that the doorways are wide enough to accommodate a wheelchair or a walker, for example.
Being proactive instead of reactive can reduce significant physical, emotional, and financial costs, Dr. Okun says. But, he acknowledges, sometimes people are reluctant to follow advice or make the changes necessary to ensure their own safety. Hearing advice from more than one person helps. So, too, does framing the message in a positive way. For people who may bristle at being told that they must use a cane or walker, for example, consider a friendlier message: A cane or walker isn’t a defeat—the larger defeat is not using it. “Remind the person that they’re not giving up, they’re being smarter about staying safe.”
A Checklist for Preventing Falls
OUTDOORS
Clear all steps and sidewalks of debris, clutter, and slick surfaces.
Install textured surfaces on stairs, walkways, porches, and decks; put railings on both sides.
Make sure doorways have low thresholds.
Install or update outdoor lighting on entrances and in other high-traffic areas.
Position the mailbox within easy reach.
INDOORS
Use non-skid floor wax.
Remove scatter rugs from tops of stairways and high-traffic areas.
Secure all rugs so they don’t slip and so feet can’t “get under” a corner.
Don’t leave clothes, shoes, and bags on the floor.
Paint a contrasting color on top edges of steps.
Evaluate all rooms for sufficient, uniform lighting, including lights at tops and bottoms of stairs.
Designate a special place for a first-aid kit and emergency phone numbers.
Consider wearing an alarm device that alerts another person when you’ve taken a fall.
BATHROOM
Install secure grab bars to help get in and out of the tub and shower safely.
Clean off soap scum and use non-slip strips on tub and shower floors.
Use adjustable-height shower heads.
Secure bath mats so they can’t slip.
KITCHEN
Store frequently used items within easy reach to avoid climbing.
If you must climb, use a quality, solid step stool with a top bar to hold onto.
BEDROOM
Keep a lamp and telephone by the bed.
Place nightlights along paths you take to and from the bed.
An Italian study has confirmed the findings of a Korean study that was featured on this website in the Summer edition in December 2014. This Italian study found that the six-week robotic-aided program of gait training proved effective long-term in improving balance and walking ability.
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BACKGROUND:
Gait impairment, balance problems and falls have a negative impact on independence in ADL and quality of life of patients affected by HereditarySpasticParaplegia (HSP). Since no pharmacological options are available, treatments rely mostly on rehabilitation therapy, although almost no data on this topic exist. Given the demonstrated effectiveness of robotics in improving gait and balance in various neurological diseases, aim of this study is to test the effectiveness of a robotic-aided program of gaittraining on balance, walking ability and quality of life in adult subjects affected by uncomplicated HSP.
METHODS:
Thirteen patients affected by uncomplicated HSP were subjected to a six-week robotic-aided gaittraining protocol. Participants underwent a battery of 3 walking test, 1 balance test and 2 quality of life questionnaires.
RESULTS:
At the end of the treatment a significant improvement of balance, walking ability and quality of life was observed in almost all the tests. The improvements were maintained over a two-month follow-up period.
CONCLUSIONS:
Our study indicates that a roboticgaittraining is long term effective in improving balance and walking ability with a positive impact on quality of life in patients affected by uncomplicated form of HSP. As currently there is no specific treatment to prevent or reverse HSP progression, our contribution would be significant for the development of exercise recommendations in this rare disease.
At HSP social events I meet other HSPers who have a wide range of disability – some don’t use a walking aid, some use a walking stick, some (like me) use a walker and some use a wheel chair. While I use a walker I enjoy going on public transport by myself, it boosts my self-esteem.
. . .
Shopping around the price for a walker varies considerably, at the low end of the market they are an affordable price but at the high-end, they are very expensive – about three times the cost! High End walkers as well as expensive, fold up sideways, that is at right angle to low-end walkers.
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The question is: Are high-end walkers worth the extra expense?
Your needs are probably different from mine, so in sharing my experience owning two expensive walkers, I’ve tabulated the features that are important to me.
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Walker A Walker B
Weight 6.5 Kg 8.3 Kg
Compactness good fair
Performance on Rough Surfaces good fair
Locking in Folded position excellent not provided
(Note 1)
Locking in unfolded (using) position not 100% reliable excellent
(Note 2)
Braking on flat surfaces adequate excellent
Using brakes on down ramps adequate poor
Wheel diameter front 240 mm 210 mm
Wheel diameter rear 200 mm 210 mm
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Notes:
Omission of this critical locking mechanism is a significant negative.
Sometimes embarrassingly difficult to unlock, needs to be completely redesigned.
Leading HSP neurologist and researcher, Dr John K. Fink of the University of Michigan shares this communication on his recommendations for exercise.
Hello everyone,
As requested, this is a brief overview of my recommendations for exercise in HSP and PLS (Primary Lateral Sclerosis). One caveat: my recommendations are not based on scientific research of exercise methods in HSP and PLS. These recommendations are based on talking with many individuals with gait disturbance and finding what seems to be helpful.
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The basic concepts are to a) find the problems, b) address the problems specifically both as isolated exercises and importantly, through complex task-based exercises; c) keep score of your progress, d) when tasks become easier, change the routine to make things more challenging; e) expect improvement (recognizing it will be slow); f) core muscle exercise and aerobic conditioning are key.
Here are a few notes: Identify the factors that make walking difficult. HSP and PLS affect walking differently in each person. For some individuals, spasticity (affecting hamstrings, quadriceps, adductors, “heel cords” in variable proportion) is the major problem. In other individuals weakness (hip flexion, foot dorsiflexion, hamstrings for example) or endurance is the major problem. Often weakness (in certain muscles more than others) and spasticity (in certain muscles more than others) occur together (in variable proportions) with balance difficulty and slowness in muscle activation.
Consultation with a neurologist, physiatrist, physical therapist, personal trainer are often helpful in identifying which factors are particularly problematic. This is the basis for developing a function-specific exercise program.
Develop an exercise program that:
a) “starts low and goes slow” (begin with something you’re capable of and increase the frequency and intensity by approximately 10% each week)
b) is graded (increasing intensity and frequency)
c) is monitored (by you, keeping track of performance, and by your therapist or trainer)
d) addresses the function-specific goals
e) is varied (monotonous routines are difficult to maintain)
f) has days off each week where other exercises are performed
g) ideally is done with exercise partners (activities that are performed completely alone are difficult to maintain).
Both complex/contextual exercises (e.g. climbing gym, water aerobics, kicking a weighted ball) and isolated exercises (leg lifts, abdominal exercise “crunch” machine at the gym) are useful.
In my view, the value of stretching, balance, core exercises, and aerobic conditioning can not be overstated and should have a central place in the exercise routine. In my opinion, “exercise frequency” (4 to 10 times a week) is at least as important if not more important than the intensity of a given exercise period.
I hope this is helpful.
Sincerely,
John
John K. Fink, M.D.
Professor, Department of Neurology
University of Michigan
New technology has resulted in a greater variety of mobility devices which are lighter weight, often more portable and less expensive than ever before.
The breakthrough came about a decade ago when small powerful motors running off lithium batteries began showing up in industrial and consumer products, such as electric cars. Change is fast these days and new products appear often. We’ve learned that whether or not a mobility products facility carries a specific product is often dependent on what they’re certified to assemble and repair so we suggest that if you find something you’re interested in trying or buying, you contact various disability equipment provider to inquire about availability. Also, things change so quickly these days, you might try again in a few months if you aren’t able to find what you want at first go.
Independent Living Centres Australia (ILCA) http://ilcaustralia.org.au/ is a collective network with member ILC’s from each Australian state and the ACT. They provide independent, commercially unbiased, actionable information and advice, and raise awareness of the role that Assistive Technology plays in enabling whole life participation in the broader community. Their website is a great resource with a ton of information under “scooter and wheeled mobility”. Information is divided in sections: Three Wheeled Scooters, Four Wheeled Scooters and Small Travel Scooters. They offer supplier information and tell you where you might be able to see devices on display. We’ll show you some of the more unusual devices in each of their categories to give you some idea of what’s available.
Three Wheeled Scooters
There are now some super light three wheeled, sit down scooters! Here are a few of the 34 different models from ILCA’s website.
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TravelScoot Deluxe
On their own website they claim, “The TravelScoot is by far the world’s lightest and most compact electric mobility scooter. It’s the ideal scooter for everyone who’s feet are not playing along but who are otherwise still in a fairly good shape.” This model, the TravelScoot Deluxe weighs 16KG. Price is currently listed at $2,675.
Lynn Tullock, senior neurological physiotherapist at Advance Rehab Centre in Sydney reports that patients of hers with a TravelScoot are very pleased with it, especially due to its lightweight and portability. It folds up and can be stored in the overhead bin on flights, making it convenient for travel.
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Afikim Porter SE Mobility Scooter
Here is a heavy duty outdoor model with headlight and rear view mirrors and availability of a two seat model. (Price P.O.A.)
This is a three wheeled sit down scooter with an in-wheel motor. Yes – the motor is actually in the front wheel! This saves on space and weight. It is foldable and disassembles into two parts for transport. Total weight is 25KG. Priced from $2395.
Here are some of the more unusual of the 85 different scooters in this category from ILCA’s website.
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Nybro Venture Gold Series 2 Seater 4WD Scooter
This is a battery operated, four-wheel drive scooter with two in-line seats. The seats rotate a full 360 degrees. Designed for adult outdoor use and over rough terrain. It is also available as a two wheel drive vehicle. Optional hybrid version enables switching between petrol and electric power, allowing for longer travel distances. Price $13,990 plus GST
This scooter is a rear wheel drive, four wheeled scooter, with a solid cover designed for outdoor use to protect the adult user from the weather. The scooter features a delta style tiller, with finger-operated controls. The base has front and rear suspension. The side windows can be opened, and vents allow air to the front window. The removable doors use a lockable, push down lever to open and are hinged at the rear. The vinyl covered, contoured and padded seat can recline. (Price P.O.A.)
A large four-wheel battery powered scooter for outdoor use. It has finger and thumb operated controls and a weight capacity of 227kg. The large 330mm wheels have front and rear suspension and a high ground clearance. It features front and rear lights. (Price P.O.A.)
A rear wheel drive scooter for use outdoors and on rough terrain. Features include finger controls, front double wishbone suspension and mono shock rear suspension. The scooter has a contoured seat which can be removed for transport and an off board charger. A range of accessories is available. Price $5,490
While ILCA’s site lists 28 different products under this category, we’ve seen some of them before in their 3 wheel and 4 wheel categories. Here are a few of the additions.
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Solax Mobie Portable Mobility Scooter
A four wheeled, compact scooter that is able to fold for transport. The Mobie folds into a suitcase that features small wheels and a handle so it is able to be pulled around. The mobie portable scooter lifter (PR18391) can also be used to lift folded scooter into the boot of a vehicle. (Price P.O.A.)
A lightweight rear wheel drive four wheeled scooter that folds compactly for transportation. Suitable for indoor and outdoor use on flat, even surfaces. It is not suitable for off road or off road like surfaces. It has a LED colour battery indicator display, extendable handlebars, armrests, higher capacity battery and higher carrying capacity and a slightly wider seat. Price $3795
A range of electrically powered transportation devices that operates through the shift of the user’s body weight. The user can either stand on the device, or a seat can be customised. Available in two models and with a range of options and accessories.
Information for all of the above mentioned devices was available on ILCA’s website at the time of publication. Here are a few more devices that currently exist. They may be harder to find in Australia today but we’ll list them here because things are changing so quickly.
Triad
The Triad is a three-wheel electric mobility scooter. One nice thing about the Triad, from their website, “Eye Level Shopping: Independence you deserve at eye level with those you interact with on the Triad 750 electric scooter. Other medical device type scooters seem to keep you below eye level away from easy shopping and unable to reach items on your own.”
This is a stand up, rechargeable electric scooter that balances itself like a Segway. Currently on a US site, (and currently out of stock) the price is listed at $369 US, equivalent to about $435A.
(This scooter is also listed on Fishpond.com.au but currently unavailable)
So, there is a lot of equipment available out there! If you have considered getting a device or if it’s time to upgrade, maybe some of this information will be helpful. Aside from all of the above information, you can learn more by checking for videos of specific devices in action on Youtube.com. Too, prices will likely vary as you check different sources. Ask suppliers about a test drive before purchase.
Unfortunately there is complexity around using a device in public as a “disability device”. Certain devices in certain places can be considered hazardous to pedestrians. While we can’t possibly list all the different rules/devices/places that might affect you, here is a site that examines restrictions in different parts of the world for Segway devices. Rules and regulations about taking mobility devices on aircraft can also vary from airline to airline and place to place.
Many people struggle with the difficulty of continuing to live life as they used to, and the desire to do things that they like to do, in the face of a significant decline in their walking ability.
Questions can arise such as…
“Is the weekend away worth it any more?”
” Can I still deal with all the hassles involved with flying, and dealing with the airlines (who often don’t cater well for the needs of people with mobility issues)?”
“I enjoy it when I am there, but getting to and from (… a favourite place or thing to do) is just getting harder.”
. . .
. . .
Scenarios like this often lead HSPers to ponder questions like:
“Do I need to now start using a cane, or progress from a cane to a walker, or from a walker to a wheelchair or scooter AND suffer the loss of even more independence?”
Or “should I just accept the fact of my mobility decline and stop going to certain places or doing certain things AND miss out on things I really enjoy?”
These are not good questions as they lead down a path where the choice needs to be made for EITHER this OR that.
A much better way to think about it is this:
What mobility support do I need for different parts of my life?
That is, what is a good answer for the different demands that different situations place on my needs for mobility support?
. . .
For example, I can still get about the house by myself, occasionally using a wall, table or sofa to steady myself as I get about. When it comes to walking in the park, I really do need a cane for support and safety. When I go shopping and there are crowds of people, I can’t move quickly enough, I can’t manage the things I buy by myself, and I quickly get tired, so a scooter is a good option there.
. . .
By using different mobility options and supports for different situations, you are actually increasing your level of independence and freedom by not giving up the things you want to do AND you are still maximising your mobility as allowed by the situation.
Sure, you may not walk everywhere anymore, but you still walk when and where you can.
