I remember reading an article on urinary tract infections (UTIs) when it was new on the Foundation website in 2016. The image of a pond that doesn’t drain – well that stuck with me! As women age, we become more susceptible to urinary tract infections (UTIs) and having HSP makes it worse. Men with HSP can get UTIs too. I was getting a worrying number of urinary tract infections and wasn’t surprised. Then it got so bad, I’d had 5 UTIs in 7 months! I was tired of the pain and huge inconvenience, of running to different doctors’ offices for testing and prescriptions, of paying for doctors’ visits and prescriptions and I worried about taking antibiotics too often. I had to do something.
I Googled about UTIs and found a remedy, a powder to mix and drink with water every third day, so I gave that a try. At my yearly gynecological check-up, I told my doctor what I was taking. She read the ingredient list and told me the important thing in there was “D-Mannose” and I should just be taking that – so now I am. Mannose is a type of sugar that prevents certain kinds of bacteria from sticking to the walls of the urinary tract and causing infection. The term “D-Mannose” is used for the packaged nutritional supplement to prevent recurrent urinary tract infections. I’ll admit that what I read about it online is more complex than I currently understand but this is from US National Institutes of Health (NIH):
D-mannose appears protective for recurrent UTI (versus placebo) with possibly similar effectiveness as antibiotics. Overall, D-mannose appears well tolerated with minimal side effects – only a small percentage experiencing diarrhea.
The gynecologist also explained how with age and being post-menopausal, women’s vaginal lining naturally thins. She recommended topical estradiol cream, an estrogen hormone. I started using that too, as instructed, inserting 1g in the vagina every week. And now I’ve been UTI free for the last 11 months!
Men with HSP can get UTIs too. And while estradiol cream isn’t an option, I wonder if taking D-Mannose might help? (The research study was women only). It’s easy, inexpensive and can prevent annoying, painful, messy UTIs. It made a huge difference to my quality of life!
Editor’s note: There are many treatments available for UTIs, from supplements in the supermarket or pharmacy through to prescription items. The Foundation does not recommend nor endorse any particular treatment for UTIs. Check with your doctor about what’s right for you.
SOURCES:
1. HSP community member Karen
2. Am J Obstet Gynecol. 2020 Aug; 223(2): 265.e1–265.e13. Published online 2020 Jun 1.doi: 10.1016/j.ajog.2020.05.048
D-mannose vs other agents for recurrent urinary tract infection prevention in adult women: a systematic review and meta-analysis
The Department of Social Services has a National Disability Advocacy Program (NDAP) offering different types and forms of advocacy for people with disability.
The main points of the program:
Approaches to Disability Advocacy:
Citizen advocacy: matches people with disability with volunteers.
Family advocacy: helps parents and family members advocate on behalf of the person with disability for a particular issue.
Individual advocacy: upholds the rights of individual people with disability by working on discrimination, abuse and neglect.
Legal advocacy: upholds the rights and interests of individual people with disability by addressing the legal aspects of discrimination, abuse and neglect.
Self advocacy: supports people with disability to advocate for themselves, or as a group.
Systemic advocacy: seeks to remove barriers and address discrimination to ensure the rights of people with disability.
NDAP agencies can also assist with issues that may arise with the National Disability Insurance Scheme (NDIS) or with service providers. They list participating agencies by State.
Disability Advocacy Fact Sheet
The Disability Advocacy Fact Sheet articulates the agreed position between the Department of Social Services and the National Disability Insurance Agency. It outlines what disability advocacy is, why it is important and why independence matters.
Find an Advocacy Agency (Ask Izzy)
Agencies are funded to provide disability advocacy support in specific geographic areas. The Disability Advocacy Finder is a web-based application that has been developed to assist people with disabilities, carers and their families, to search for Commonwealth and state and territory government funded disability advocacy agencies.
NDAP and the NDIS
NDAP agencies based in NDIS sites may have additional roles, such as assisting people through the planning and internal review processes with the National Disability Insurance Agency (NDIA). Funding has been provided via the NDIS Appeals program to support people with disability who seek an external review of NDIA decisions through the Administrative Appeals Tribunal, which is an important mechanism to ensure that decisions are fair and robust.
Assessments of eligibility for NDIS packages is ongoing and a whole of Australian Government approach will see further advances made in the areas of employment, child and family wellbeing, and training. This will increase residents’ awareness of Australian Government funded disability advocacy support.
Disclaimer: The Foundation presents this information in good faith but cannot attest to the accuracy, completeness, adequacy or effectiveness of the information, resources and services referenced in the article. Feedback in the Comments at the bottom of this article is welcomed from community members with experience of the program.
An innovative mobility device has hit the market with distributors in South Australia, Victoria, New South Wales, the NT and the ACT.
from the company …
The all new Tek RMD M1 is not a wheelchair alternative, but a brand new mobility platform that completely reimagines the way individuals with 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 in many places around the world. The all new Tek RMD M1 comes in an indoor and outdoor model, with an optional motorized electric lift and foldable seat. Tek RMD M1 is a patented, CE Marked, and FDA 510(k) cleared technology.
The Tek RMD M1’s small footprint allows users to go places and reach items otherwise unavailable in a standard wheelchair whether at home or at work. By minimizing the renovation required for living spaces the Tek RMD M1 often decreases overall costs to living with a walking disability.
Because people with HSP live with a chronic, progressive condition, the risk of a mental health condition such as depression is significantly higher than in the general population. Additionally, with already limited mobility for many, the enduring pandemic has increased the challenge of social interaction and made isolation more prevalent.
Adam Lawrence, Chair of the HSP Support Group (UK), writes on his HSP blog:
From the annual survey, it was clear that a few people were having less sex than they used to. One person indicated that they miss sex quite a lot, and another reported having hardly any since their HSP diagnosis. A comment was made by one that their partner no longer desires them.
I also note that the topic of sex and disability doesn’t feature much in the media, and so I bought a copy of the book: A Quick and Easy Guide to Sex and Disability, by A Andrews. I wanted to understand more, and as usual, share this understanding with you readers!
In the first few pages you find out that the author is a paraplegic cartoonist, who has sex! They write the book with the aim of ditching the question “how can disabled bodies have sex” and replace it with “how can disabled folk have more enjoyable sex”. They note that society does not really discuss sex and disability, and present three myths: ‘disabled people aren’t attractive’, ‘disabled people don’t care about things like sex’, and ‘disabled people can’t perform sex’, identifying that the things people say can impact on wellbeing.
They start by covering communication – firstly communicating with yourself, and then goes on to give ideas about how you may want to try communicating, noting that this can be hard to do. The remainder of the book goes into some of the more practical points which can occur when having sex with a disability. The conclusion is that sex is whatever you want it to be, and the possibilities are endless.
I like the information presented here, and it is presented in a very friendly, matter-of-fact way, allowing you to see many perspectives and help you form your own view. The cartoons in the book present a wide range of disabilities, and also a wide range of people – capturing the diversity of the human race in a very nice way!
For centuries, people have been using mindfulness meditation to try to relieve their pain, but neuroscientists have only recently been able to test if and how this actually works.
Researchers at UC San Diego School of Medicine measured the effects of mindfulness on pain perception and brain activity.
The study, published July 7, 2022 in PAIN, showed that mindfulness meditation interrupted the communication between brain areas involved in pain sensation and those that produce the sense of self. In the proposed mechanism, pain signals still move from the body to the brain, but the individual does not feel as much ownership over those pain sensations, so their pain and suffering are reduced.
“One of the central tenets of mindfulness is the principle that you are not your experiences,” said senior author Fadel Zeidan, PhD, associate professor of anesthesiology at UC San Diego School of Medicine. “You train yourself to experience thoughts and sensations without attaching your ego or sense of self to them, and we’re now finally seeing how this plays out in the brain during the experience of acute pain.”
On the first day of the study, 40 participants had their brains scanned while painful heat was applied to their leg. After experiencing a series of these heat stimuli, participants had to rate their average pain levels during the experiment.
Participants were then split into two groups. Members of the mindfulness group completed four separate 20-minute mindfulness training sessions. During these visits, they were instructed to focus on their breath and reduce self-referential processing by first acknowledging their thoughts, sensations and emotions but then letting them go without judging or reacting to them. Members of the control group spent their four sessions listening to an audio book.
On the final day of the study, both groups had their brain activity measured again, but participants in the mindfulness group were now instructed to meditate during the painful heat, while the control group rested with their eyes closed.
Researchers found that participants who were actively meditating reported a 32 percent reduction in pain intensity and a 33 percent reduction in pain unpleasantness.
“We were really excited to confirm that you don’t have to be an expert meditator to experience these analgesic effects,” said Zeidan. “This is a really important finding for the millions of people looking for a fast-acting and non-pharmacological treatment for pain.”
“For many people struggling with chronic pain, what often affects their quality of life most is not the pain itself, but the mental suffering and frustration that comes along with it,” said Zeidan. “Their pain becomes a part of who they are as individuals — something they can’t escape — and this exacerbates their suffering.”
By relinquishing the self-referential appraisal of pain, mindfulness meditation may provide a new method for pain treatment. Mindfulness meditation is also free and can be practiced anywhere. Still, Zeidan said he hopes trainings can be made even more accessible and integrated into standard outpatient procedures.
“We feel like we are on the verge of discovering a novel non-opioid-based pain mechanism in which the default mode network plays a critical role in producing analgesia. We are excited to continue exploring the neurobiology of mindfulness and its clinical potential across various disorders.”
SOURCE: Science Daily July 8, 2022. University of California, San Diego.
Mindfulness meditation reduces pain by separating it from the self
Originally written by Nicole Mlynaryk
Co-authors include: Gabriel Riegner, Valeria Oliva and William Mobley at UC San Diego, as well as Grace Posey at Tulane University and Youngkyoo Jung at University of California Davis.
How does IVF help someone with HSP have children without them inheriting the condition?
There are different ways to prevent a child being born with a serious genetic condition. This may be the case for HSP which is a progressive, incurable, and potentially disabling disorder. The decision to take measures to have a child free of HSP is entirely a personal one. It may be helpful to consider this issue well before starting a family, and to start discussions with your partner, family, and health professionals.
Preimplantation genetic diagnosis (PGD) or preimplantation genetic testing is a sophisticated technique which can be used to prevent children from inheriting HSP. PGD can be used when one or both parents have a known genetic abnormality (in this case an HSP mutation). Testing is performed on an embryo created through the IVF process to see if it also carries the mutation(s) in the HSP gene. Only embryos that do not have the mutation(s) are selected.
There are other options as well, including testing during a pregnancy with amniocentesis or chorionic villus sampling (prenatal testing). Some people may prefer PGD to prenatal testing, due to the emotional and health impacts of terminating a pregnancy.
You may also choose not to undertake any genetic testing of the pregnancy; the decision is up to you.
What is IVF actually … what is the process?
IVF (In Vitro Fertilisation) is a procedure undertaken in a specialised laboratory, where the egg and sperm and joined outside the body. The fertilised egg, or embryo, is grown before being implanted in the uterus. After this process there is a chance that a pregnancy will occur. IVF is often performed for couples with fertility issues.
Can it help anyone with HSP have children free of the condition?
PGD can be performed for a variety of circumstances, and it is important to have a discussion with your doctor to see if it is relevant for you. However, it can only be performed if the HSP genetic diagnosis is known. One important factor will be the mode of inheritance of HSP, or the way it is transmitted. For example, for autosomal dominant forms of HSP (i.e. a mutation in a single copy of the gene), such as mutations in SPAST (SPG4), ATL1 (SPG3A), or REEP1 (SPG31), there will be a 1 in 2 (50%) chance of passing the mutation on without PGD or prenatal testing.
On the other hand, if you have autosomal recessive HSP (mutation on both copies of the gene), such as SPG11, SPG15, SPG7, or SPG5A, your children will be carriers of a single mutation but will likely not get the condition, unless your partner also has the condition or is also a carrier.
If both you and your partner are carriers of an autosomal recessive type of HSP, you have a 1 in 4 (25%) chance of passing on the condition to your children. This situation may come to attention if you have already had a child with HSP.
These issues can be complex and difficult to understand, and it is best discussed with a clinical geneticist or genetic counsellor so that you are in a good position to make an informed choice.
So I need a conclusive genetic test for HSP … what if the genetic test result finds something that only might be causing HSP?
This can be difficult to decide what to do. In some cases, a decision may be made to do PGD, with the knowledge that this is a risk reduction measure. However, this is very uncertain situation and requires detailed discussion with a genetic counsellor or clinical geneticist.
Where do I start, who do I see to work out if it is possible in my situation?
Talk with your health professionals. In this case, a general practitioner would be a good place to start. You may have a neurologist and they are also a good person to ask. There are many specialist neurogenetic clinics in major cities who will have knowledge about this situation. Furthermore, a referral to a genetic counsellor or clinical geneticist may be appropriate.
How long does it take? How much does it cost? What are the chances of success?
It may be best to ask these questions to an IVF specialist. Certainly, IVF and PGD can have a large out of pocket cost, and the chance of success may vary according to many factors such as the age of the mother.
How do I choose a clinic?
Check with your GP, genetic counsellor or clinical geneticist about which clinic to choose. It is worth remembering that not all IVF clinics will have expertise in PGD.
I have a child with HSP who is now 20 and in a serious relationship. Should I talk with them about IVF? When? How?
It would be a good idea to let your child know that there may be ways of preventing HSP from being passed on to their children, that this is optional, and that they can discuss this issue with their health professionals. I think it is best to start the conversation as soon as possible to allow for forward planning, and to allow your child to make an informed decision.
Dr Kumar
With thanks to Dr Kishore Kumar, neurologist, for his input to this article.
Here are some older articles on IVF published on the website:
The American Academy of Neurology has a website called Brain & Life with an online magazine that has relevant articles for people with HSP. You can also subscribe to their email newsletter for free. Here’s their home page: https://www.brainandlife.org/
One HSPer said “I think the magazine is very good. There is a lot to see, read, explore and search for. Here are a few good articles from recent issues”.
The Benefits of Group Exercise for People with Neurologic Disorders (Jun/July 2022)
Allison Kessler is a doctor living with spinal cord injury. She writes:
Getting old is hard, but it beats the alternative. This commentary explores some of the challenges of aging with a physical disability and the considerations taken to prevent further functional decline or injury during the ageing process.
While everyone has his or her own challenges with ageing, ageing with a disability is harder. Our threshold is lower. On a good day, with the use of my wheelchair, shower chair and an accessible environment, I am completely independent and able to go about my daily life. However, a change that might make something a little more difficult for an able-bodied person can make an activity completely impossible for those with disability.
Although it is sometimes hard as a physician to admit my limitations, if I, as a physician living with a spinal cord injury taking care of others with spinal cord injuries cannot ask for help or ask others to change environments or practices, who will do that for my patients? How can I expect my patients to protect themselves or to integrate back into their lives? Removing physical barriers and creating wheelchair access improves community, interpersonal, and professional reintegration for people with lower extremity mobility limitations. By speaking up about my needs, perhaps I can help to reduce stigma and improve access for the patients I care for on a daily basis.
To understand spasticity, it helps first to understand muscle tone. “Muscle tone gives our body structure,” says Dr. Karim, a US physiotherapist. “In everyday terms, if we had zero muscle tone, we would resemble a wet noodle, or a pile of muscles and bones on the ground. But if we had too much tone, we would be as stiff as a board and find it extremely difficult to move.”
If you don’t have enough tone, you have what’s known as hypotonicity. Having too much tone is called hypertonicity. Spasticity falls under the category of hypertonicity, and is “velocity-dependent,” says Dr. Karim. In other words, how quickly a muscle is moving matters to how much spasticity occurs.
“The faster that you move a muscle — or the faster that you stretch a muscle — the more that the tone reacts. In other words, the stronger the resistance, the more spasticity occurs.”
Spasticity and nerves
Spasticity doesn’t just refer to muscle fibres and muscle tone. It’s also related to the nerves that are connected to the muscles, says Dr. Karim. “Spasticity is essentially a nervous system issue rather than a muscle issue.”
Impairment in proper nerve function through injury or disease can disrupt the signals from your brain to your muscles Dr. Karim says. “The signals are inhibited from relaxing the muscle. This overactivity leads to stiffness, tightness and spasticity” he adds.
Who has spasticity?
Your muscle tone can be affected by neurological conditions that cause damage to your central nervous system — your brain, your spinal cord and everything in between that connect them. “Spasticity is caused by any condition that damages the motor neurons coming from your brain and spinal cord that connects to the muscle,” says Dr. Karim.
Common conditions that can have spasticity as a symptom include:
Hereditary conditions, such as hereditary spastic paraplegia.
What parts of the body are affected by spasticity?
Muscles of the body
The parts of your body affected by spasticity depend on where the damage occurs in your nervous system. Dr. Karim says there are common muscle groups generally affected by spasticity, located in three general areas of your body:
Upper limbs
In your upper limbs, these are muscles that cause flexion movement. Examples of this kind of movement include bending your arm at the elbow or clenching a fist. Muscle groups affected by spasticity include:
Shoulder adductors.
Elbow flexors.
Forearm supinators (the muscles wrapped around your forearm).
Wrist and finger flexors.
Lower limbs
In your lower limbs and extremities, the muscles affected are involved with extension movement. This can involve things such as toe pointing or stretching your knee. Muscle groups affected by spasticity include:
Hip adductors (inner thigh muscles).
Knee extensors.
Knee flexors.
Plantar flexors (these help you point your toes down).
Ankle inverters (these help you point your toes inward).
Toe flexors (muscles that cause your toes to flex).
Head, neck and trunk
The muscles impacted here have “side bending and rotation movement,” says Dr. Karim. Think about the muscles you use rolling your head around to stretch, or bending your upper torso to one side. Muscles affected by spasticity here include:
Sternocleidomastoid (a major neck muscle).
Upper trapezius (a muscle covering the base of your neck over the tops of your shoulders).
Scalenes (muscles found on the side of your neck).
Dr. Karim says there are exceptions to the above muscle groups but these are the patterns that are more common.
Can exercise help with spasticity?
Exercise can temporarily reduce spasticity. “This reduction can last anywhere from minutes to a few days, depending on the amount of spasticity present and the type of exercise,” says Dr. Karim. “Whether it’s an exercise or treatment that a physical therapist does, it can have a very real, calming effect on the spasticity.”
However, this reduction is not permanent. “Stretching and strengthening the spastic muscles can’t cure or heal spasticity, or may not bring it back down to a normal tone,” notes Dr. Karim. “Unfortunately, therapists cannot heal your spasticity. It’s not like a muscle injury that’s going to heal and go back to normal.”
That being said, exercise can help you manage the long-term impact of spasticity, such as muscle pain, stiffness or contracture. “Contracture occurs when the muscle becomes so stiff, and it doesn’t move for a long time that there’s actually a physiological change in the joints and in the muscle,” explains Dr. Karim. “The tissue actually changes and cannot move anymore.”
Best exercises to reduce spasticity
When determining a good exercise routine, the first thing to keep in mind is that whatever physical activity you do, it shouldn’t be painful. “‘No pain, no gain’” is both inaccurate and dangerous when it comes to spasticity.”
Soreness or a slight muscle ache is common and may even be expected. “But a pain that feels sharp, or a shooting pain that stops you in your tracks, that’s a warning sign,” Dr. Karim adds. “You should never push through that type of pain. Stop immediately and consult with your doctor or therapists. Feeling acute pain when performing a movement or exercise is a signal to your body that something’s wrong.”
When it comes to exercises with spasticity, combining stretching with strength training, or resistance training, can help. Strength training has more benefits when you’re in a weight-bearing position, adds Dr. Karim.
“You might hear this technical term: closed kinetic chain. Basically, that means you don’t have your limbs out in the air, maybe moving weights,” he explains. “Instead, you’re actually closing your movement chain by putting your hands or your feet down on the ground or on a solid surface.”
Calf stretches on an incline board
One exercise Dr. Karim recommends is stretching your calves on what’s called an incline board or a slant board. These are shaped like wedges and can be adjustable. “You hold on to a stable surface and step onto this incline board,” he says. “This is something that’s at an angle — roughly a 15- to 25-degree incline — and you stretch by stepping onto it.”
For the best impact, “both of your heels should be on the board or one should be on the floor,” Dr. Karim adds. “To target your calves, your knees have to stay straight, and you lean your hips forward.” A good comparison to this stretch is thinking about how your calves feel when you’re walking up a hill or a steep incline.
You can buy these incline boards online or even make your own at home, using wood, grip tape and nonslip material. However, the angle of the incline board is crucial. “If you have something less than 15 to 25 degrees, you won’t feel much of a stretch,” says Dr. Karim “If you have something a little bit higher of an angle, it may be uncomfortable.”
Dr. Karim recommends keeping this incline board in a room you visit a lot, such as your bathroom. “Every time that you’re at your bathroom sink, as long as it’s safe, you can lean on the sink as you’re washing your hands,” he says. “You can sneak in a stretch throughout the day, rather than just having a specific dedicated time in your day to stretch.”
Arm exercises using a wall pushup
To stretch your wrist muscles, Dr. Karim recommends what he calls a wall pushup. “Place your arms on a surface,” he says. “If you’re able to, I recommend putting your hands on the wall.”
Dr. Karim stresses not to skimp on balance or safety when doing this. “You shouldn’t feel any discomfort either,” he notes. “You’re mostly stretching your wrist muscles by leaning into the wall and leaning your body forward.”
Aquatic exercises
Studies have shown that aquatic exercises such as swimming are very beneficial for children living with cerebral palsy. “These showed that when researchers measured the muscle itself, swimming had an elastic effect,” says Dr. Karim, “meaning it made the muscle a little bit more flexible after being in the water.”
Cycling or treadmill
There is some research showing that cycling and treadmill training can also help with spasticity. “To be clear, these also have a temporary effect on the spastic muscle,” Dr. Karim states.
Best practices for exercising and spasticity
Anyone exercising needs to be mindful of following best practices and listening to their body. For people living with spasticity, Dr. Karim says there are some specific considerations when exercising.
Work with a physical or occupational therapist
First and foremost, before starting an exercise routine for spasticity, Dr. Karim says to consult with a physical or occupational therapist. “A therapist can evaluate you and tailor a specialized program to meet your needs. This is by far my primary recommendation for anyone before starting with specific exercises.”
Be mindful of things that trigger spasticity
Different things can trigger spasticity. In studies, people have self-reported spasticity increases due to having a full bladder, having their period, being pregnant, a change in sleeping habits, colder weather or increased stress.
Exercise at a time of day that’s good for you
Different times of day might be better for exercising. “Some people may experience more spasticity in the morning,” says Dr. Karim. “This is likely due to laying in bed asleep in the same position for a long time. That can make your muscles feel very stiff in the morning.”
Be aware of medication timing
Medication timing can also make a difference in your spasticity. “If you take medication that helps your muscles relax, you want to be mindful of that,” says Dr. Karim. “Therefore, it is wise to time your medication along with your exercise routine, so you’re able to have more of an impact.”
Don’t move too fast
Because spasticity is velocity-dependent, slow and steady wins the race when exercising. “The faster you move, the more that you can trigger spasticity,” he says. “During an exercise routine, if you’re moving too fast, you may actually trigger a higher degree of spasticity versus moving in a slow and controlled fashion.”
Can stretching reduce spasticity?
Much like exercise, stretching can help you manage spasticity, not eliminate it completely or cure it. Dr. Karim says, “In the long term, stretching may not change objective measures for spasticity, but it’s also not harmful. Stretching is a preventative intervention that may prevent issues in the future.” Prolonged stretching is helping you maintain your range of motion and prevent contracture.
If you live with spasticity, Dr. Karim says it’s vital that you think of stretching as a healthy habit like brushing your teeth. “Brushing your teeth is something that’s been accepted as a part of our culture. From a young age, it’s something that everyone understands you have to do for good long-term health.
“Stretching is the same kind of daily health maintenance that everyone has to do,” he continues. “However, it’s especially helpful for someone living with a condition where there is a high likelihood that your muscles can become stiff in the future.”
Combining stretching with calming, deep breathing exercises can be very effective for people with spasticity. “An example of an effective breathing pattern is one where your exhale lasts longer than your inhale,” Dr. Karim explains. “This pattern has a calming effect on your central nervous system. And it will help you to have a better stretch, especially if you have spasticity.”
Therapeutic equipment and spasticity
If you have more severe spasticity, a neurologist or a neurophysio can help you decide whether techniques or movements could work in tandem with exercise to decrease spasticity. Additionally, physical and occupational therapists have equipment, therapeutic techniques and treatments available to help. “Consulting with a healthcare professional to determine the best plan can always help,” advises Dr. Karim.
Tilt table or standing frame
This kind of assistive technology can help you “achieve and maintain proper positioning of the joints and trunk” while standing, says Dr. Karim. “If you are able to safely stand with the appropriate equipment, this is very important to prevent contracture.”
If you use a wheelchair, it’s also important to have a wheelchair and seating assessment by a therapy professional so you’re positioned correctly. Improper seating positions may lead to an increase in spasticity.
Splinting or orthotics
“Splinting your wrist and hand, or wearing orthotics, can both help manage spasticity,” Dr. Karim says. “This provides a prolonged stretch throughout the day that can also help prevent contractures from occurring.”
Spasticity is different for everybody
Spasticity looks and feels different for everybody. Figuring out an approach to managing it also looks different for everyone — although taking into account multiple techniques and considerations can have a compounding effect on reducing spasticity.
Dr. Karim also says some people can even use spasticity to their advantage and maintain their quality of life. This happens with some conditions that affect muscle strength, as well as tone. “You may have weakness in your legs, but you might have a lot of spasticity as well,” he notes. “Even though you have weakness, the spasticity may allow you to stand or assist with transferring to different surfaces. Sometimes, your spasticity kicks in and can help perform functional tasks.”
In a case like this, consulting with a therapy professional can help. “Healthcare providers can help you determine, ‘Is it a good thing to decrease your spasticity? Or should we keep your spasticity in place so that you’re able to function better?’”
At the end of the day, you and your healthcare team can decide on the best way to approach managing your spasticity. “Even though we may not be able to heal your spasticity, we do have treatment options to help improve your activities of daily living, mobility and quality of life,” reassures Dr. Karim.
