HNPP · Physical Health

Benefits of Occupational Therapy for those with HNPP

ergotherapy

After several months of falling off the internet radar due to unruly fingers, I realised I may need some outside help. That’s where occupational therapists and vocational rehabilitation comes into play.

It’s easy to become confused over the role of an occupational therapist, given that it seems as if it is related solely to work-based activities. However, they cover a wide range of issues and activities that allow a person to operate relatively independently.

What is occupational therapy?

Occupational therapy is crucial in helping a person cope with the functional, vocational, and social impact of the condition. It helps a person in improving sensory motor skills through regular exercises related to it. It also teaches us to avoid exposure to certain environmental and industrial toxins that can be harmful.

The OTs also teach self care activities and patient safety issues. The therapist also teaches us to pay attention to issues which involve functions like learning how to change positions smoothly to avoid becoming numb and how to prevent falling. They can work with physiotherapists to ensure you get the best care possible.

There is a strong educational element in occupational therapy. Therapists typically teach people how to:

  • Prevent falls by watching out for uneven terrain and other hazards
  • Adjust habits, such as sitting correctly without injuring yourself
  • Make ergonomic changes at work and home to reduce pain and increase mobility
  • Find the best solutions to allow you to live independently.

occupational therapist

Obviously, there are a lot of crossovers with vocational rehabilitation when it comes to learning to stabilise yourself. From avoiding falling at home and work, as well as correcting your posture, which can be applicable in any situation. Therefore an OT can be in charge of:

  • Environmental assessments – at school, work, home
  • Equipment recommendations
  • Fatigue management
  • Career advice
  • Workplace assessments

OTs are people-centred and their goal is to promote and enable independence. They will assess how well you cope with activities of daily living (ADLs), listen to your needs concerning personal care, leisure, work, study, travel and household management and advise on options for you. Their assessment may involve breaking down the activities you find hard into their component parts.

For example, if you have neuropathy you may struggle with everyday activities like getting dressed, opening food packets or holding a pen to write. Your OT will work with you to find solutions to these problems to help you remain independent. Solutions may come in the form of trying some adaptive equipment to compensate for your difficulty, or by working on activities to help maintain strength in certain muscle groups.

OTs can also make referrals for making splints for hands. People with HNPP may develop problems holding and gripping and experience some muscle wasting in their hands. A hand splint can help to keep your hand in a good position in order to minimise pain and muscle contractures.

At various stages of the condition, an OT may be able to offer expertise in areas such as:

  • Individualised fatigue management programmes to understand the nature of your particular fatigue within your daily life
  • How to more effectively prioritise and manage your time to achieve the things you want to do
  • Strategies to improve sleep and good quality rest
  • Relaxation as a coping strategy – for example as a stress or pain management technique
  • Ergonomic information about effective joint protection and energy conservation strategies
  • Hand-care techniques including provision of hand exercise programmes, fabrication of custom made hand splints to aid daily tasks, pain management and hand positioning
  • Adaptive equipment from small aids to major adaptations for helping you at home or in your workplace
  • Signposting and referring on to agencies to help with the cost of purchasing daily living aids and adaptations
  • Information on employment legislation and your rights within the workplace
  • Graded return-to-work and remaining-in-work programmes
  • Care assessments for direct payments or home helps
  • Mental health-related referrals.

In the UK, OTs work in various settings including community teams, social services and hospitals. The health professionals involved in your care, including doctors, nurses and therapists, can refer you to an occupational therapist if this is required. You may also be able to self-refer to some therapy services – so it is always worth giving your local social services a call. They will explain the correct process for your area.

Some of the adapted changes in my own home include:

  • A wheelie tray to be able safely carry hot items from one place to another
  • A food workstation – which has adapted facilities such as a place to hold objects in order to be able to cut safely, a flat grater and slicer
  • Adapted knives – it has better grip and position to allow you to cut object safely
  • Special cutlery – a bevelled fork allows you to use one hand to both cut and eat
  • A bath board – to be able sit safely while in a bathtub

While you may feel helpless in the face of such an uphill battle, occupational therapists go a long way in assisting you to succeed.

Useful links:

  • Complete Care Shop – for adaptive equipment – there is VAT relief for those with HNPP
  • Living Made Easy – (NHS and OT recommended) price comparison site for adaptive equipment
  • AbilityNet – help the lives of disabled people by helping them to use digital technology at work, at home or in education
  • Naidex – disability information shows like Naidex are excellent for giving you an idea of what is available, but be warned, these shows are huge. Take advantage of their Shopmobility scooters, or you’ll never last the distance
  • Expo Database – trade conferences around the world that showcase the latest disability equipment.
HNPP · Physical Health

Can holistic therapies help HNPP sufferers?

holistic alternative acupuncture reflexology treatments hereditary neuropathy hnpp

When you get to that stage where you feel constantly tired and slightly fed up that nothing works with chronic pain, many turn to alternative treatments for answers. The truth is that as most holistic therapies haven’t been scientifically tested and therefore we’re completely reliant on personal testimonies.

That being said, what treatments are out there?

We know that while there isn’t a cure for genetic conditions, there are some benefits from certain non-Western medicines, one being acupuncture. But does it help? According to Dr. Andrew Weill, an American celebrity doctor, it can help relieve the pain of peripheral neuropathy.

Disclaimer: Please ask your GP or medical practitioner before attempting any treatments included on this website.

Acupuncture

Acupuncture uses pressure points throughout the body to realign the body’s energy, called the qi. The age-old art of acupuncture has been used–along with more conventional means to ease the pain felt from peripheral neuropathy, and even hereditary neuropathic conditions such as Charcot Marie-Tooth disorder (CMT).

leg-foot-arm-muscle-chest-human-body-484520-pxhere.com

While Dr. Weill doesn’t elaborate on how it can help, a 2014 study on the sister condition of HNPP, CMT, found that after several sessions, it had made a difference in the long-term. A 43-year-old woman with complaints of moderate-to-severe neuropathic pain and limited mobility had four sessions of acupuncture, but reported quite a lot of pain during the treatment. A month later, however, she had managed to begin to walk with the help of orthotics and the pain had significantly reduced.

This could be a one off case, as even the British Acupuncture Council are unable to substantiate the treatment for genetic conditions, stating that because HNPP is rather rare, it is difficult to gather enough individuals with the same symptoms for a trial in China. They say, never say ‘never’, though. Experience is equally that an although an ‘imbalance’ may have been handed down from parent to child this does not that it becomes more greatly untreatable.

With peripheral neuropathy, the BAC say while acupuncture treatment may mitigate some of the symptoms which peripheral neuropathy sufferers experience, there is obviously a limit to what a treatment like acupuncture can achieve. But together with other treatments, it may help ease some of the pain aspect of it especially with hard muscles.

Personally, I’ve had a few sessions, but you really need to find a good therapist you can trust for this.

Acupressure, on the other hand, activates the same points as acupuncture but uses finger pressure instead of needles. Practitioners employ massage protocol to improve circulation and acupuncture to relieve pain. It may be another option to consider but there’s even less research out there. And it may be the better choice for those afraid of needles.

Reflexology

This practice is a system of massage used to relieve tension and treat illness, based on the theory that there are reflex points on the feet, hands, and head linked to every part of the body. In similitude to the theory to acupressure, reflexologists believe that applying appropriate pressure to these points stimulates the flow of energy, thus helping to relieve pain or congestions throughout the entire body.

reflexology hereditary neuropathy hnpp

Reflexologists believe that through light to moderate pressure techniques, a stable rhythm of information can be sent and received through the Central Nervous System. But does it help? Dr. Weill seems to think so.

According to reflexology therapist, Nicole Banner,  the treatment that she used as part of a report, was effective in helping to improve the symptoms of peripheral neuropathy (especially the tingling, numbness, and stabbing pains) of a 64-year-old man. She did iterate that it should be seen as a “complementary” therapy, rather than the full shebang.

The test subject, who has peripheral neuropathy, reportedly tried to control his pain with medication (Lyrica). The medication did not work so he tried eight weeks of therapeutic treatment involving nerve block injections and Transcutaneous Electrical Nerve Stimulation (TENS Unit electrical stimulation), where he saw a slight improvement.

After five sessions of reflexology, he noted that his balance “improved significantly, his sleep quality has improved to the point of not needing pain medication at bedtime, and the numbness and tingling sensations are mild”.

Mims Cushing, co-author of You Can Cope With Peripheral Neuropathy, and a sufferer of peripheral neuropathy herself lists several therapies including reflexology. Her advice is: “If you like to try anything once, try reflexology. You may be surprised at how great your feet feel, but you do need to keep coming back for longer lasting results.” [1]

For more successful case studies on reflexology and hereditary neuropathy, read the report from the Reflexology Association of Australia.

Chiropractic Care

After speaking to several people in the HNPP suppport groups, it seems that chiropractic therapy has been beneficial to several members. According to chiropractor Dr. Paul Raveling, who treats peripheral neuropathy patients at his practice, Raveling Chiropractic Center, P.A, while chiropractic care is not a ‘cure’ for peripheral neuropathy, it is an important part of an effective treatment program.

“Chiropractic care is an effective treatment for peripheral neuropathy because it targets the root cause for a patient’s pain symptoms; we do not simply rely on medication to numb this pain,” he says.

Neuropathy of the arms and legs is apparently the second most common ailment treated by chiropractors, according to the National Board of Chiropractic Examiners. When the vertebral joints of the spine begin to degenerate, it can press on the roots of the spinal nerves, causing the classic symptoms of neuropathy. Chiropractors are said to relieve pressure by performing spinal adjustments to bring the vertebrae back into alignment, releasing trapped or compressed nerves.

According to a study published in the British Medical Journal in 2004, chiropractic adjustments, “with or without exercise, improved symptoms more than medical care did after both 3 and 12 months.”

Cushing, who also mentions chiropractic as an alternative treatment, says that as long as you collaborate completely with your physician, it should be find to go ahead.

Unfortunately, the Foundation for Peripheral Neuropathy has also reported certain ponzi schemes attempting to con people out of their money through bogus chiropractors so beware. In some circumstances, they’ve made people worse.

Magnets

Magnetic therapy has begun to be used as an alternative treatment for many conditions including peripheral neurotherapy. It consists of using magnets of varying sizes and strengths that are placed on the body to relieve pain and treat disease. Thin metal magnets are attached to the body alone or in groups. They can be worn as bracelets or necklaces, attached to adhesive patches to hold in place, placed in bands or belts to be wrapped around the wrist, elbow, knee, ankle, foot, waist, or lower back.

Dr. Michael I. Weintraub, a clinical professor of neurology and internal medicine at New York Medical College, who has done extensive studies of magnetic therapy, says that it has had some benefits to those with diabetic peripheral neuropathy.

A study of 375 diabetics who wore a magnetic device for one month (with control subjects who wore a sham device) showed “benefits equal to or better than that from drugs,” he said.

However, there is little research to show the advantages for those with hereditary neuropathy and there are some that say it is a bit of a sham.

If you’ve tried other holistic treatments, please feel free to share!

  1. (Page 78, “You Can Cope With Peripheral Neuropathy: 365 Tips For Living A Full Life”, Cushing, Mims and Latov, Norman)

    UPDATE: I’ve added another treatment since the initial post after several recommendations.

    HNPP · Physical Health

    How important is water to those with HNPP?

    sea-water-person-sunlight-wave-lake-107952-pxhere.com

    Water is one of those debatable topics that seems to arise regularly. Can hot water help nerves? Or is it cold water that can help ease some of the pain? The jury is out there on this one.

    HNPP and other hereditary neuropathic conditions can affect sensory and autonomic nerves (sensory neuropathies), or sensory and motor nerves (sensory and motor neuropathies). Sensory nerves carry sensory information – about such things as pain, temperature, and vibration – to the brain.

    When the sensory and autonomic nerves are affected, the ability to feel pain and changes in temperature is impaired more than the ability to sense vibration and position (knowing where the arms and legs are). The hands and feet are affected most. Hence the temperature of water that you may need can depend on how the area affected is currently feeling.

    According to LtCol Eugene B Richardson, who authors the Neuropathy Journal site, some patients have found that putting the affected area in cool tap water, not freezing, for 15 minutes before bed may calm the damaged nerves. Other patients  have found that warm water, NOT hot, helps rather than the cold water. These suggestions featured in Peripheral Neuropathy in the American Academy of Neurology but Dr. Norman Latov and in You Can Cope With Neuropathy by Mims Cushing.

    The bottomline is that it really depends on the individual. And the main thing is that it has to work for you. However, neurotherapists suggest you should always spend more time soaking in warm water than cool water.

    But why is water important for HNPP’ers?

    For people suffering from neuropathy, performing exercises is just not possible due to the severe nerve pain. Few low impact exercises can help control or reduce the symptoms of neuropathy. Though not all exercises will work for everyone, but there are some water exercises that can be of great benefit to people suffering from neuropathy.

    Disclaimer: Please ask your GP or medical practitioner before attempting any exercise included on this website.

    Julie O’Connor, Aquatic Specialist, who deals with neuropathic patients, told a 2016 conference for Neuropathy Alliance of Texas, that you get 17 times the resistance of being in the water than on land.

    Why choose water exercise?

    • Improve muscle strength
    • Increased circulation and oxygen around the body through the blood – it is said that nerves regenerate better if there is more oxygen in the blood
    • Improve coordination
    • Improve range of motion
    • Decrease pain
    • Decrease weight bearing on joints
    • Improving balance prevents falls
    • Social interaction
    • Combat depression

    Neuropathy and exercise

    • Safety first – safety on the deck of the pool is important, as tiles can be slippery, and you may have to consider how to get in and out of the pool. Aqua pool shoes can help for those with neuropathy in the feet. Keep a bottle of water, you’re still sweating!
    • Do what you enjoy – when you stop moving, your body starts rebelling. When you move, you bring oxygen to the tissue, staving off the initial neuropathy
    • Listen to your body – if it hurts, don’t do it, however, generally water doesn’t have a massive impact on your body.
    • Two hour rule – for any exercise that you’re doing, if you’re sore in your joints, or you’re feeling worsening fatigue in your nerves then you’ve done too much. Make sure you’re doing the exercises properly.
    • Move it or lose it – you’re likely to gain more issues if you don’t move at all.

    Types of aquatic exercise

    • Shallow end – Using different equipment or even just doing poses with correct posture.
    • Deep (non-weight bearing)
    • Training for specific goals such as rehabilitation, weight loss, balance, cardiovascular and muscular endurance, pain management
    • Swimming – sometimes one-on-one can help at the beginning for those not ready for a group class. You may even not even need to swim but do easy positions instead.
    • Ai chi – Tai Chi in water
    • Water strolling –  In water that is about abdomen high, stroll over the pool swinging your arms as you do when strolling ashore. Abstain from strolling on your tiptoes, and hold your back straight. Fix your abs to abstain from inclining too far forward or to the side.
    • Hydrotherapy – Alternating between hot and cold water helps expand and constrict the blood vessels – forcing the blood to move through the vessels to other areas in the body. In addition to improving circulation – the warm water releases pain-relieving endorphins that help block pain.  The warm water also helps the body to relax, thereby reducing the stress and anxiety that can aggravate your symptoms.

    It may or may not work for everyone, but personally, it’s great just being able to move without cramps for a change, and it’s important to be out and about to avoid isolation.

    Will you take the plunge?