HNPP · Mental Health

How the internet can help HNPP sufferers

smartphone-mobile-hand-screen-man-table-907641-pxhere.com

There are days where you don’t have the time, energy, let alone the funds to help yourself. And as a result reaching out can be a lot of effort. So with that in mind, how do you socialise without leaving the house?

Read: How HNPP can cause isolation

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role.

According research conducted by the University of Warwick, chronically sick people do not have lower rates of social participation per se. However, the pattern of social participation exhibited by people affected by chronic illness varies from the one exhibited by people not affected.

“If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population.”

Susannah Fox, associate director of digital strategy – Pew Internet and American Life Project

Across all types of chronic illness the pattern of activities in which people affected by chronic illness engage in is very similar, therefore when it comes to social participation, the decisive point is whether one is affected or not by chronic illness and how it may emotionally affect people suffering from HNPP.

One of the most telling things you will find is the absence of resources devoted to help those battling with illnesses to actually make this leap. Instead, there is a wealth of literature pointing to the fact that lack of social interaction is actually a problem.

What technology is out there?

We are fortunate however, to live in an age where social networks make it easy to reach out to others. These are especially helpful when illness and pain prevent us from leaving our homes.

Many different e-social activities, including email and instant messaging, give you an opportunity to stay connected daily. It does not matter whether you are reaching out to friends, family, or online acquaintances; the important thing is that you are connecting and not struggling alone.

So without further ado, here are a few apps, gifts and devices that you can use without leaving your sofa:

  • Vent App – currently available on both iOS and Android, it does exactly what its name implies: it lets you vent. And the best part is that your contacts list stays out of the picture – you’re sharing with random users who stumble upon your posts, and your profile can remain as anonymous as you like. The purpose of venting is to air your issues so you can move on and calm down, and this app is an effective way to virtually get something off your chest. And when many social apps require plenty of your friends to be signed up in order to get the best experience, Vent’s a refreshing take on anonymity.
  • ReachOut –  a support network app for patients and caregivers fighting chronic conditions. By connecting with other patients with similar ailments in specific support groups, users are able to find support, gain self-confidence, develop better coping skills and reduce loneliness and depression.
  • Rabbit – Rabbit is about sharing your everyday. Watch your favourite shows with your friends, without being in the same room or even the same city. Collaborate with your coworkers when you’re all on the road. The possibilities are endless. It is one of the most well-rounded stream-sharing services available, partially because it can be used with any browser and partially because you can share all your favourite streaming services including Netflix, Hulu, Crackle and more. Rabbit requires you to have an account and add the people you want to share a stream with as your friends. It works by having one person in control of the stream, which is shared via a proxy browser right on the Rabbit website. This means you’re essentially sharing the view of a full browser with everyone in your party, and you can go anywhere on the web that you like.
  • Spoonie Living – this app is geared for the creative types, and likely be more applicable for the younger generation. It was created as part of a PhD project, to see if the use of illness and dietary related stickers would help individuals creatively express themselves in a slightly different way to general Meme images found on the internet. It is hoped that using stickers will help towards people creatively managing their illnesses on a daily basis.
  • Facebook Groups – this goes without saying. Finding people with the same condition can literally be a lifesaver when you feel that no one seems to understand you, or you have no one to speak to about the condition.
  • Google Voice-to-Text – for those with hand issues, Google’s speech-to-text recognition supports 119 language varieties for users who want to dictate a message to their phone, which Google claims is three times faster than typing. To access the voice typing function, install Gboard for Android or iOS and pick your language by pressing the G, then selecting the settings wheel. For voice search, use the Google app and pick your language in the voice settings menu. Certain phones have this in-built so you can access Google Voice input in your settings. It will save you time and effort when trying to get in contact with people.
  • CatchMyPain – an intelligent pain diary app that helps you keep track of your pain and connect with similar patients. It is one of the most well-known pain apps not only for its helpful features but also for the way in which it builds community. With this pain app, patients can locate their pain on their body; track stress, fatigue, and mood; and connect with their physician, all through the app. CatchMyPain also has a forum feature that connects chronic pain patients to each other.
  • Diseasemaps – this website connects people who are suffering from different conditions to help them find suggestions from others who also suffer; to make their lives better. You can also find people suffering from the same conditions or even symptoms from across the globe or even in your own city.
  • Patient networking sites – people fighting chronic illnesses are less likely than others to have internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released by the Pew Internet and American Life Project and the California HealthCare Foundation. Social networking sites include:

  • Spoonie Squares – Sophie Bull, a fellow ‘spoonie’ decided to knit squares as an alternative to expensive Spoonie boxes. These are just basic little squares of any colour people ask for and she says she’ll ship them to people for free. No cost on postage or material. She’s encouraging people to join so others can help out and pay it forward. It’s a sweet little community attempting to make a difference.

Obviously joining real support groups and taking part in the real world is the best way of not becoming isolated. And while it is important to have a network of people to relate to, there will be times when life requires you to be alone or when you simply want to be alone.

The point is to strike the right balance and not allow isolation to take over your life.  Get out there in the real world or utilise the internet. Reach out to friends, loved ones, and acquaintances, or try and meet some new friends. You should also enjoy your alone time when it is needed.

Read: Can new technology help HNPP sufferers?

HNPP

Gadgets to help cope with HNPP

hand-table-wood-wheat-meal-food-1228654-pxhere.com

With its muscle aches and chronic fatigue, HNPP can make the simplest activities painful and difficult. At its worst, it can make chores you once took for granted suddenly seem daunting. So what is available to help with these trying times?

“The number-one tool that one needs during a flare, by far, is this word called autonomy,” says Nortin Hadler, MD, a professor of medicine and microbiology/immunology at the University of North Carolina at Chapel Hill. “It means the ability to pace the day and choose activities.”

Fortunately, there are an array of tools to control pain and lessen the burden on sore muscles.

Seat lift

If you have problems with your knee, raising the seat by a few inches can make all the difference. A seat lift assistant is a mechanical lifting cushion that you can take with you wherever you go.

There are dynamic sitting pads which are air filled cushions thought to aid active sitting and outstanding sitting comfort, while encouraging an upright posture. Specially designed pads, like the Sissel Sitfit Plus, make it easy to retrofit chairs for more comfortable seating. So what’s the verdict?

It’s been mostly praised by those suffering from various neuromuscular injuries including an Amazon customer who had a herniated disc. However, others have echoed the above opinion that durability may be an issue, and with a one year warranty, you may need to think a little more about investing in this.

On the upper-end of the scale is the Upeasy’s Power Seat and Seat Assist (electric and nonelectric, respectively), which will give you a gentle push on your way up. They can be used with pretty much any chair or sofa, and they’re portable. The lifting action is activated automatically as the user stands, lifting up to 70 per cent of their weight. Make sure to buy this product from a reputable dealer, some sellers using Amazon’s marketplace sell knock-off versions instead which break, according to a few reviewers.

Ergonomic Jar Opener

These specialised jar openers provide a strong, safe grip for opening many items and feature a comfortable, ergonomic handle. There are several options if you’re looking for help with opening jars or cans. Most of these provide four to eight different sizes of circles in a bid to release a variety of condiments.

 

I have a standard one from Amazon – and it’s not perfect. The grip needed just on the handle puts pressure on the hand itself, and if the jar is shut tight, it may not budge at all. However, I can swear on a jar popper – the Jarkey opens jars in a jiffy by simply releasing the vacuum.

Portable Grips

Securely installed grip bars are a must for getting safely in and out of the bathtub.

If you don’t always need the help, there are portable versions that you can install as needed – these are also useful for travel. It’s important to get a good quality one, as a less than adequate grip can actually be dangerous if the suction isn’t strong enough while you’re trying access your bathtub or get up from anywhere.

Double grip

Bridge Medical has been recommended as the company makes a single-grip bar, as well as a telescoping pivot-grip grab bar that can be installed at a variety of angles. There are several reviewers on Amazon however, who have complained that although it is well-made, the bar would not attach properly on to ceramic tiles or tubs hence becoming a liability. I’d suggest shopping around and checking out reviews to see if it’s worth the purchase.

Gripped Cutlery

When you have arthritic fingers, everyday tasks, such as eating your dinner, can be painful and difficult. You may need knives, forks and spoons with handles that are easy to grip and won’t slip out of your hands.

These eating utensils from Good Grips fit the bill with large, cushioned handles made of a rubber-like material. Each utensil has a metal shaft that can twist in any direction, making it easy to hold in a position that’s comfortable to you.

Electric Can Opener

These little beauties are fully automated – you don’t even have to hold the can. You place the gadget on a can, press a button, and the can opens. The integrated magnet lifts the lid off the can for easy disposal. Cans are cut around the sides to minimise sharp edges. Ideal for those with limited manual mobility.

Some products can be rather noisy, and there seems to be a whole host of other problems encountered by users including breaking on the first try, lids getting stuck, cutting on the outside of the can instead even the fact that it refuses to switch off.

According to BestReviews, the West Bend 77202 Electric Can Opener comes out on top with a powerful 70-watt motor, a locking/cutting mechanism, and an automatic shut-off feature.

Ring Pullers

Made especially for ring pull cans this specific can opener has a J shape that opens them easily. No more struggling to get your fingers under the tab, simply slip the tip under the tab and rock your hand back.

ring pull can opener hnpp hereditary neuropathy

It has a comfort grip non-slip handle, perfect for those with arthritis, and is dishwasher safe. You may have to be slightly dexterous to try and insert this under the ring pull.

Slow Cooker

Slow cookers can make meals so much faster and easier. You have the ability to drop in all the ingredients in, turn it on and leave it… and if you buy one with the warming feature then your meal is still hot when everyone’s hungry.

It is perfect for making large batches of sauces, chillis, soups, etc. and freezing them for when you’re having a chronic pain flare up and all you can manage is too pull something out of the freezer.

Don’t assume more expensive options are better. Sometimes you’re paying for fancy controls, more timer options and even auto-stir functions. Be sure that you genuinely need these if you fork out for them.

Think about the size of the pot – it’s no good buying a cheap and cheerful slow cooker that’s on offer if it only feeds two people and you have a large family. Generally speaking, a 1.5-3L slow cooker will feed one or two people; a machine that’s 3-5L will serve three or four people; and anything between 5-6.5L will feed five or more people. You can get bigger ones too for six or more people.

lakeland-3-1

Lakeland Slow Cooker is recommended by the BBC Good Food site. It’s lightweight with a nice ceramic pot that you can take to the table, and it feeds three to four people easily. There’s an auto-warm function for keeping food at serving temperature, and Lakeland will give you your money back if you aren’t happy.

So as you can see, there is a whole host of gadgets at your disposal – whether it works or not differs from person-to-person. Having tried a few of these myself, it can be hit and miss, but mostly a success.

Please feel free to comment below about gadgets that you feel are essential for your daily living.

Read: When Small Tasks become Daunting with HNPP

HNPP · Physical Health

Best ergonomic work space for HNPP

work desk ergonomic hnpp hereditary neuropathy

Follow my blog with Bloglovin

Work-related issues can be an increasing concern for those with HNPP. Your body is designed for regular movement, but many spend the bulk of their day sitting still in awkward positions, which is worse with neuropathy. After just 20 minutes hunched over in a chair, blood pools in the legs and immense pressure builds on the spine. Hence employees in desk-bound jobs have a huge problem of exacerbating their symptoms.

The Centers for Disease Control estimate that 1.9 million people experience carpal tunnel syndrome as a result of sitting for long hours. Hence renovating your work space is the key to creating a more ergonomic space so you can avoid nerve compression and other discomforts of working at a computer for long hours.

As many HNPP’ers are already aware, carpal tunnel syndrome is sometimes part and parcel of having hereditary neuropathy. Repetitive hand and finger movements, especially typing and data entry, can cause tissues to swell and press on the median nerve, which travels through the wrist and extends into your hand.

Tingling, burning or itching sensations in your hand, along with weakness in your hands, fingers and wrists, are early signs. And while short-term surgery may relieve symptoms, it may not in the long-term.

Disclaimer: Please ask your medical practitioner or occupational therapist for more information. This article is based on various research, journals and testimonies.

Setting up your workstation & posture to be ergonomically-correct

Human beings were not made to sit in a chair for 8 hours per day, yet with the commonplace “desk job,” sitting in front of a computer has become a way of life. However, there are several basic workstation improvements that can be suggested to decrease strain and minimise neuropathic symptoms, ranging from reorganising the items on your desk to utilising ergonomically designed chairs.

Standing

If you’re working while standing, ensure that you’re wearing comfortable shoes, preferably on a cushioned mat, and that your back and shoulders are straight. Try to keep your arms as unbent as possible to reach the keyboard, mouse and office supplies on your working surface.

Sitting

Chair positioning

An adjustable chair or work desk is your best friend when it comes to preventing leg and lower back pain at your desk. Always try to adjust your station to you, rather than you adjust to your station, in order to maintain relaxed muscles in neutral positions. When sitting in a chair, your feet should be flat and your legs should form a 90° angle at the knee.

Computer_Workstation_Variables_cleanup

If the angle is less than 90°, adjust the chair up slightly until your thighs are just lightly supported. You don’t want all of your weight resting on the chair because that causes prolonged pressure on the thighs.

As the Canadian Centre for Occupational Health and Safety says wearing high heels is not recommended, as this would hinder keeping your feet in a flat, neutral position, and put a lot of unnecessary pressure on the body. If you have to wear heels, carry some flat shoes with you or keep them at your desk so you can change them when there is too much strain on your feet.

Arm positioning

If you’re working while seated, adjust your chair or desk so that you don’t bend or put too much pressure on your wrists when you use your keyboard and mouse. The more relaxed your elbows and wrists are, the more beneficial blood flow is reaching your hands and fingers, and the less your tendons will strain while performing repetitive motions.

During a busy work schedule, it can be easy to lose your relaxed alignment. Many people lean in, draw their arms up high, lay their palms on their desks, and use equipment that requires too much strain to operate repetitively.

wrist rest hnpp hereditary neuropathy

Eye positioning

Once your chair and keyboard are adjusted correctly, make sure your computer monitor is at arm’s length in front of you. Also ensure the top of the computer screen is at or below eye level. This will minimise neck strain and ensure you’re not tilting your head up or down for extended periods of time.

After this adjustment, if you find your monitor is too low, prop it up with a stand or try to adjust it by putting a book or two under the feet of the monitor.

In general, it’s important to keep things within easy reach, and plan ahead based on the task you’ll be performing.

Microsoft_Natural_Ergonomic_Keyboard_4000

Tools to consider for your workstation
  • Desktop computer – while laptops are becoming more popular, their design is inherently awkward. The keyboard tends to be too high if you’re looking at the screen at eye level, while the screen may be too low if the keyboard is at a 90° level. Laptops are fine for occasional use, but for extended working hours, purchase either a separate monitor or keyboard and keep your laptop on a hard, sturdy surface.
  • Palm and wrist rests – Palm and wrist rests provide support and encourage appropriate posture as you navigate your mouse or type on your keyboard. To use the above type of pad correctly, rest the heels of your palms (not your wrists) on the cushion. It’s important to keep your wrist splints on so that they do not bend.
  • Functional desk – Computer desks with roll-out keyboard trays have the best design for long working hours. The keyboard is low for comfortable typing while the raised surface puts the monitor at eye level.
  • Comfortable chair – A chair with good backrest for lumbar support, armrests and head rests and a comfortable reclining function that allows you to sit at a posture of 100 to 110 degrees is essential to your daily work. According to the University of Pittsburgh’s Workplace Health & Safety Program, a reclined position significantly decreases postural muscle activity and pressure in the lumbar spine. This makes for a more relaxed, sustainable sitting position than the erect 90-degree posture often portrayed.
  • Chair cushion – A cushion for your chair can alleviate pain, numbness and stiffness in the lower legs. It also works wonders for low back pain.
  • Ergonomic keyboards – 
    • Ergonomic keyboards keep your wrists and hands in a natural position, promote proper typing habits, and they come in a variety of builds & styles to fit your needs. Before making a decision, visit an electronics store’s keyboard section to test out the style that’s right for you.
    • Mechanical keyboards use switches that register a key press almost immediately. The keys can be lightly touched to type, making their use considerably more easy on the fingers and joints.
  • Ergonomic mouse – An non-ergonomic computer mouse puts undue stress on your forearm because, if you haven’t noticed, your arm sort of twists when using it. What to consider when buying a mouse:
    • A natural grip – it has to be the right shape and size for your hand. Size is everything, if it’s too small, you’ll put undue pressure on your hand.
    • Customisation – make sure you buy a mouse for the hand that you use to utilise it.
    • Variety – consider the type of mouse you feel comfortable with such as vertical, trackball etc. It’d be worth going into a computer store and testing them out.
  • Under-desk trays –  a keyboard and mouse tray under your workstation will help you keep your posture relaxed.
  • Pens with ergonomic grip – Ergonomically-designed pens help reduce writing stress and fatigue. Wide-barrelled with a cushioned grip, these pens reduce the force needed to hold the pen.
  • Standing desks – if you can stand it’s important to set up a standing desk the right way. Your computer screen should sit just above resting eye level, so you have to look up slightly to see it. This keeps you from hunching over or slouching as you tap away on your keyboard, as well improve posture.
  • Foot rest – Swelling occurs when blood pools in the feet from long periods of inactivity. There are many different types of ergonomic design foot rests to consider – from the half-cylinder foam design that prevents the legs from dangling and provides added supportive comfort, to the rocking foot rest which simulates motion and encourages circulation.

The best person to ask about your workstation is an occupational or vocational therapist. Having a good ergonomic environment can help prolong possible flare ups with HNPP. It isn’t a long-term miracle cure, but at least it will not make it any worse.

HNPP · Physical Health

Can new technology help HNPP sufferers?

A discussion about how technology needs to advance to fulfil the needs of HNPP sufferers led to me searching about smart new neurotechnology devices available out there. There are some already on the market linking up with apps, morphing into wearables and becoming fully customisable. But do they work?

Quell Wearable Pain Relief

quell pain relief neuropathy HNPP

The first device I came across was Quell Wearable Pain Relief from NeuroMetrix. The US based company claims to be the only FDA approved device that can be worn while sleeping, and says that it can reduce pain at the flick of a switch. It sounds like a dream to those who suffer from chronic pain, who usually end up sounding like a maraca with the amount of drugs having to be taken on a daily basis.

The way it works is that you  strap it to your calf muscle and when the device is activated, and it is said to stimulate nerves in the leg that send signals through to your brain which induce your body to release its own pain blocking chemicals, known as endogenous opioids, which should reduce or eliminate chronic or even temporary pain.

That is a big statement to declare, especially as the creator claims that the device is “FDA cleared, doctor recommended and 100% drug free.” Neuromix also say that 81 per cent of users said they reported an improvement in their chronic pain.

Much like other wearables, the Quell can connect up to a companion smartphone application in order to give the wearer a way to customise their experience and it can potentially even work while they’re asleep, based on customisable preferences.

The difference between a TENS unit and Quell’s device is said to be the fact that it is a wearable intensive nerve stimulation (WINS) unit, which is five times more powerful.

While it is relatively new, meaning there are still not that many consumers reviewing it, it seems that it has begun helping some tweeters:

Pros

  • It can be worn 24/7, even while sleeping
  • It can help relieve some symptoms of pain
  • There’s a customer care number for one-to-one help
  • Easy to set up
  • 60 day money-back guarantee
  • Can be paid in instalments.

Cons

  • You will need a smartphone or tablet, which gives access to an optional app that allows for further individualisation and tracking
  • According to Fed Up With Fatigue, it can take several weeks for chronic pain sufferers to see a difference
  • It won’t relieve all pain, but it should help relieve some of it
  • It is likely to help people differently according to the severity of the symptoms
  • It isn’t cheap at $249 for a starter kit.
  • Quell’s electrodes have to be changed every two weeks
  • Some people may experience a stinging sensation which may need recalibration, as well as headaches
  • Quell’s impact on pain relief seemed to be very treatment-dependent.
TENS Units

Transcutaneous electrical nerve stimulation (TENS) is a non-pharmacological treatment for pain relief. TENS has been used to treat a variety of painful conditions. Clinical trials suggest that adequate dosing, particularly intensity, is critical to obtaining pain relief with TENS. Hence it seems clinical trials continue to support the use of TENS for the treatment of a variety of painful conditions while identifying strategies to increase TENS effectiveness.

Tens

TENS is the application of electrical current through electrodes placed on the skin for pain control. On the normal setting (90-130 Hz), the electrical impulses generated by the unit are believed to block the pain messages being sent to the brain. This belief is based on the “gate theory.”

This theory suggests that the central nervous system has a gate mechanism built into it. When the gate is open, pain signals are able to pass through to the brain and we feel pain as a result. If the gate is closed, the pain messages are effectively blocked and we do not feel any pain.

And while it has shown a difference in terms of pain relief, the effectiveness of TENS on individual pain conditions, such as low back pain, is still controversial. There are lots of over-the-counter units, with many muscle massagers claiming to be one, but the following have been approved by some HNPP’ers.

TENS 7000

When it comes to value for money, TENS 7000 is priced in the lower end of TENS units.

The ever-popular pocket-size device has been around for years, and is most certainly here to stay. The downside is that it isn’t rechargeable.

AccuRelief

The AccuRelief Wireless TENS Electrotherapy Pain Relief has no electrode wires and requires only pushing buttons. It offers 20 levels of intensity adjustment, which may not be enough for some, but it is lightweight.

Cons

  • 30 minute shut off – you’ll need to re-start again if you’d like to continue treatment
  • You’ll have to change the batteries every 2-3 weeks, depending on usage

Most people use TENS machines without experiencing any side effects. The most common side effect is not related to the machine itself, but the self-adhesive pads.

If the pulse is too high or you use the TENS machine too often, the stimulation can cause pain or muscle twitching.

Footbeat

More than $7 million was raised to produce this new kind of footwear. Footbeat is reported to change the method of circulatory enhancement in the lower extremities. The company’s co-founder, Dr. David Mayer, a practising orthopaedic surgeon, says “Footbeat applies precise, cyclic pressure on the bottom of the foot to increase the body’s circulation, improving health and athletic performance.”

The way this rechargeable shoe is supposed to work is that a smart engine in the centre of the insole applies precise, cyclic pressure to the arch of the foot, increasing circulation.

This pump helps apparently plays a role in the venous system, is a transportation network that supplies oxygen and nutrients to your body while also removing metabolic waste.

With Footbeat applying pressure at regular intervals into the arch of the foot, it is reported to create physical benefits. These benefits mimic the benefits people get naturally from increased circulation due to physical activity including increased removal of metabolic waste and increased delivery of important nutrients that help accelerate healing and recovery. The micro-mechanical device can be activated using mobile technology in the form of a remote control. 

It’s still being rolled out so watch this space.

Pros

  • 30 day full replacement guarantee
  • The remote uses Bluetooth low energy (LE) technology that provides a range of six feet while using less power for longer battery life
  • Supposed to massage the feet
  • It claims to speeds active recovery after athletic exertion, helping to prevent soreness and injury.

Cons

  • At $450 for the starter kit, it seems ridiculously expensive
  • Cannot drive with these shoes
  • It isn’t waterproof
  • Takes an hour to charge
  • Keeps charge for only four hours
  • Can’t be worn while walking in water, mud, rain, snow or any outside moisture.

There are plenty more technologies in the developmental stage being produced, which seems exciting for many who struggle daily. But real testing needs to be done on those who have actual symptoms to understand the benefit.

Have you tried any new gadgets?