HNPP · Mental Health

How to cope with grief and loss with HNPP?

hnpp hereditary neuropathy grief loss bereavement identity

Coming to terms with your new situation i.e. a chronic condition, can be devastating. And for many, getting a diagnosis for HNPP can be that, a life sentence. The idea of having to change your identity can feel like a death, especially if you had tied a lot of your physical life around to your sense of self.

“Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany—a piercing burst of light, illuminating What Really Matters—and more like someone had just firebombed the path forward.”

When Breath Becomes Air – Paul Kalanithi

Not being able to play guitar after 22 years was particularly difficult to me, in which I’ve always referred to myself as a musician, and I’ve always used music as a sanctuary. And for many others it could be their career, the role they have in their family, or the activities that they do.

But are we ‘grieving’?

According to counsellor Andrea M. Risi, being diagnosed with a chronic illness such as HNPP can be analogous to losing a loved one: you! The multitude of losses from a living situation, job to relationships can add up and can negatively affect your mental health.

After a diagnosis it could be days, weeks, months, or even years that you may spend going through the process of grieving. There is no time frame for grief; for some it may be life long. Risi says that’s a normal part of the process.

Disclaimer: Everything written is based on personal and other’s testimonies, available journals and research. Please ask your specialist for more information.

Elizabeth Kubler-Ross‘ classic stages of dealing with dying, addressed in her notable book On Death And Dying, is useful for looking at dealing with chronic illness. The stages she identifies are denial, anger, bargaining, resignation, and acceptance. If you are still in denial you are unlikely to accept a change in your role.

  • Denial – In this stage, many people simply don’t comply with medical advice or treatments because they’re “not sick,” denying the diagnosis to yourself, but also to your family and friends.
  • Anger – you might blame yourself for ‘causing’ the disease, the doctor who diagnosed you, or even friends and family members who don’t have the illness, feeling that they don’t have an understanding. Anger can be expressed outwardly or kept festering inwardly.
  • Bargaining – This stage is full of all the ‘what-ifs’ and ‘if you do this’. You might try to bargain with your doctor so you don’t have to take medicine or follow through with treatment, though in the long-run it will only end up hurting you. Sometimes you may just have to say Que Sera, Sera (whatever will be, will be).
  • Depression – when it all finally sinks in, you might feel depressed, helpless or generally sad.  Depression can cause you to withdraw from others, have constant low energy or make you feel empty and worthless. That being said depression is treatable in the face of virtually every known physical disease.
  • Acceptance – this is when you have come to terms with your illness, founding coping mechanisms, and have learned more about the prognosis. You’ve learned that while you cannot control having the diagnosis, you can control what you do about it on a regular basis.

One thing that I have found is that these are interchangeable on any given day. It can move from anger to denial in the space of an hour so there is no linear process.

Cheri Register writes about trying to find a ‘happy medium’ while searching for an identity and managing to deal with the effects of chronic illness.

  • You can tough it out with too little help / become overly dependent on your doctor and family
  • You can keep your illness a secret and avoid thinking about it / you can discuss it openly and become self-pitying
  • You can ask for help and risk being a burden / be too independent and isolate yourself
  • You can push yourself to the limit and risk getting sicker / you can do too little and be more of an invalid than necessary
  • You can be angry about your illness and then bitter / you can focus only on counting your blessings and risk being self-delusional

(From The Chronic Illness Experience: Embracing the Imperfect Life)

Hence the key is to find a suitable balance between all of the extremes.

What can you do about it?

Ending this vicious cycle requires a lot of proactive thinking. Debbie Dawson, RN and chronic peripheral neuropathy sufferer, wrote this practical, simple guide that can help you work your way through these questions. Make a list for each of the following situations:

  • Things I can no longer do.” (Examples: Power walking, climbing more than three stairs or steep incline, running a race, driving a car without hand controls, lifting heavy items, standing for any long period, climbing a ladder, holding a job, taking a walking tour, or any major chore around the house).
  • Things I couldn’t do before, but can now.” (Examples: Have time to write, spend more time with family and friends, spend time listening to teenage grandchildren, have enjoyable dinners with friends, understand the challenges faced by the handicapped and disabled).
  • Things I do the same as before.”  (Examples: Sit in the sunroom enjoying sunsets, watch educational TV, write articles, manage investments and home budget, eat, sleep, read, use my computer and use my cell phone, fish off a pier, watch the deer outside my camper, take pictures, enjoy my dog, help other neuropathy patients, support research).
  • Things I can still do, but differently.” (Examples: Go to the mall using an aid, walk the dog with the scooter, write using a thick pen, go on an ocean cruise with the scooter, hunt turkey with help and a blind, go camping with automated equipment, drive – but limit driving to not more than four hours, go up a few stairs by pulling with arms on hand rail, stay active).
  • Things I can do differently, just not ready to yet.” (Examples: Ride the scenic train in Canada, have house modified for handicapped access, purchase a vehicle for the handicapped with hand controls).

(Page 23, “Coping With Peripheral Neuropathy”, Berman, Scott M.D)

Chronic illness sufferers are faced with questions about how they will present themselves and how they will build their life situation. New activities and lifestyle may assist this process and provide a new focus for the energy that was invested in grieving. Developing a meaningful life doesn’t just happen. So here are some ways that might help:

  • Finding new opportunities – It may mean putting time and energy into new hobbies and new relationships or looking for opportunities for personal development or spiritual growth. All of this may be constrained by the limits imposed by illness but you can do this at your own pace, one small step at a time if need be.
  • Thinking about yourself differently – You can change negative self-talk or images of ourselves that are not useful. Attitudes that focus on personal strengths and positive outcomes of the illness experience, rather than limitations, seem to be conducive to moving on with life.
  • Find a network of people – You need to honour your grief journey, nurture yourselves as you grieve your losses and reach out to others to share the burden of loss. This is where having access to a network of people experiencing long-term illness can be so helpful. Feelings can be shared in a supportive understanding context.
  • Talk to specialists – Finding a counsellor can be vital in moving past the grief hurdle. Occupational therapists can help and work with you on adaptive equipment, ways to conserve energy, and other techniques that permit you to do more with your neuropathy.
  • Set small, realistic goals you can meet – your therapists (physio or otherwise) can help you set and keep these aims. If you aim too high, you could fail and probably stop altogether.
  • Knowledge is power – make sure you know your rights, whether they are employment-based or otherwise. Keep up to date with developments in your condition, as well as treat anything else that comes your way (a common cold can feel much worse with HNPP). Don’t trust anything that claims to be 100 per cent workable, and avoid any other dodgy scams.

Everyone is at a different stage, so understanding between HNPP’ers is crucial to get through the process.

Wishing you all health and happiness.

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 to combat fatigue with HNPP

    Between you and me I find fatigue to be one of the most common occurrences during daily activities. Even travelling to and from places can take its toll. So is there something that we can do to help control it?

    Fatigue is unfortunately central to many neuropathies, but the causes can widely vary. It takes far more energy to walk, stand, balance and generally do normal, everyday things. Muscles have to constantly compensate for other areas having to do jobs they were not designed to do. 

    According to Dr. Scott Berman, in his book Coping with Peripheral Neuropathy, a study showed fatigue in autoimmune neuropathy 80 per cent of 113 patients had severe fatigue. And that fatigue was independent of motor or sensory symptoms, being rated as one of the top three most disabling symptoms. Some medications also add to the endless tiring effect which can be unhelpful. 

    DISCLAIMER: I am not an expert, everything written is based on personal and other’s testimonies, available journals and research.

    So how do you manage it?

    CMT UK, an organisation that deals with the sister condition of HNPP, Charcot Marie Tooth disorder, has made a few suggestions in order to counteract some of the lethargy.

    • Eat regular meals and healthy snacks – it is advised to eat every three to four hours instead of eating large meals with longer gaps in between.
    • Regular exercise – this might feel impossible when you’re feeling tired but it is supposed to help in the long run. A single 15-minute walk, (though many will find this difficult) or any other gentle exercise, can give you an energy boost, and the benefits increase with more frequent physical activity. Just start with a small amount and build up your physical activity incrementally over weeks and months until you feel comfortable and it doesn’t cause you any additional discomfort. 
    • Sleeping well – Two thirds of people are said to suffer from sleep issues when they have neuropathy problems. The Royal College of Psychiatrists suggests sticking to a routine of sleep every day, so getting up and going to sleep at same time daily. They also advise avoiding napping and if it helps, taking a hot bath before sleep.
    • Drinking lots of water – this is important for so many reasons. You may be dehydrated, or your medication requires a lot of H2O.
    • Weight management – excess weight can put a strain on your heart which can make you feel exhausted. Eating healthily and balanced meals as well as light exercise can help combat this.
    • Stress relief – relaxing activities can help relieve a bit of the stress which helps improve your energy levels. Even reading a book or listening to music can help take your mind off things.
    • Therapy – counselling or cognitive behavioural therapy (CBT) might help to fight fatigue. Talking about it may be a factor.
    • No caffeine – caffeinated drinks such as coffee and tea as well as fizzy drinks can potentially play havoc on your nerves. The RCP says caffeine hangs around in your body for hours afterwards. The guidance is to stop drinking tea or coffee by mid-afternoon. If you want a hot drink in the evening, try something milky or herbal. I find decaffeinated tea helps as a placebo!
    • Meals before bedtime – don’t eat or drink a lot late at night. Try to have your supper early in the evening rather than late.
    • Reduce alcohol intake – it may help you fall asleep at first but it’s likely to keep you up during the night and if you do sleep it won’t necessarily be deep. It can also make you feel tired in the morning.
    • The problems with sleep medication – there’s a chance it may interact with your current medication. It can also be addictive and eventually you may be required to take a higher dosage.
    • Muscle issues – speak to your doctor about any deficiencies that may make your muscles spasm more during the night.

      Sometimes fatigue can get the best of us. I say this as I head for a lie down. 

      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?

      HNPP · Physical Health

      HNPP and Sleep Positions

      Sleeping positions HNPP

      How many times have you woken up in the morning with a numb hand or just in general agony from sleeping in an odd angle? Well, this seems to be a regular occurrence for me and was featured as a recent topic on one of the HNPP forums. Correct positions during sleeping is absolutely vital to stop further neuropathic pain, nerve damage, and that ever-irritating pins and needles sensation.

      The compounding effects of neuropathic symptoms and sleep disturbances can leave you in a vicious cycle, so you definitely need to address it head on.

      The question asked during the discussion was should you abstain from sleeping in the below position? And the answer seems to be YES.

      schlafende-frau-bett-gr-1

      Why shouldn’t you sleep on top of your hands or with the arms near your head?

      You are likely to experience a tingling arm or hand (more likely even worse) if you sleep on it for a long period. Your body weight will exert pressure on your nerves and disrupt the circulation of blood to your arm. Sleeping on your arm may compress the arteries and restrict the flow of blood with nutrients to your arm tissue. Consequently, your arm will not send signals to your brain or understand signals from your brain.

      Extended pressure on the ulnar nerve in your arm interferes with the function of the nerve and makes the hand numb. Sleeping with a bent elbow compresses the ulnar nerve. You will wake up with tingling arms or hands.

      And if you have carpal tunnel syndrome, it will definitely make it worse.

      Pressure on the median nerve compresses the nerve. Any numbness, tingling, impingement, or pinching in the median nerve will lead to pain in the fingers, hand, and forearm. The first symptom is fingers falling asleep or becoming numb at night. The numbness and pain may extend to the forearm and sometimes to the shoulder.

      What should you do about your hands?

      Wear a brace. One of the easiest things you can do to make sleeping easier is to wear a wrist brace to bed. This will prevent you from bending and flexing your wrist while you sleep.

      Wrist_brace

      And stating the obvious, avoid sleeping on your side. Sleeping on your side may be associated with a higher risk of developing numbness, weakness or further pain.

      Support your arms while you sleep. It’s important to think about where you normally place your arms while you sleep and whether or not this may be worsening your symptoms. Try to avoid sleeping with either arm underneath you or your pillow, as this may worsen the pain.

      sleeping

      Propping your arms up on pillows while you sleep may help relieve tension and reduce pain. If you are sleeping on your side, make sure the side which may be worse is on top. Place a pillow in front of you and place the affected hand on the pillow. You may need to experiment with the height of the pillow to find the most comfortable position for you.

      Keep your arm straight. Bending your elbow may increase the compression on your nerve, which can make your symptoms worse. As much as possible, try to keep your elbow straight throughout the night.

      So what is the best way of sleeping?

      Speaking to several other HNPP’ers, it seems the consensus is to sleep on the back. While some say sleeping on the front is also comfortable, it can also cause undue pressure on your back and spine. This is because most of your weight is in the middle of your body, which makes it difficult to maintain a neutral spine position when you’re sleeping.

      You’ll also need to turn your head to the side when you sleep on your stomach. That puts your head and spine out of alignment, twisting your neck, potentially causing long-term neck pain.

      If you’ve always slept on your stomach, then it might be difficult to change a lifetime habit. If that’s the case, use a thin pillow or no pillow at all. The flatter the pillow, the less angled your head and neck will be. Also put a pillow under your pelvis. This will help keep your back in a more neutral position and take pressure off your spine. In the morning, you will need a good stretch!

      With back pain, place a pillow under your knees to help maintain the normal curve of your lower back. You might try a small, rolled towel under the small of your back for additional support. Support your neck with a pillow.

      Sleeping_Positions_for_Back_Pain

      If you sleep on your side, draw your legs up slightly toward your chest and put a pillow between your legs. Use a full-length body pillow if you prefer.

      Whatever your position, due to injuries or preference, the main thing is PADDING and lots of it. Most of this will come in the form of pillows, but spending a little bit of money to buy a memory foam mattress will do you a world of good.

      Happy slumbers!

      HNPP · Medication · Physical Health

      HNPP and Alternative Supplements

      Fruits

      It sounds like there are a lot of good tidbits of information as well as conflicting messages in terms of taking supplements, and other foodstuffs that are said to have wonderful healing properties.

      From supporting nerve regrowth to reducing inflammation, there is a whole host of additional organic as well as synthetic tablets and herbs that can be taken with regular medication.

      I personally take a selection of Vitamin B tablets and Folic Acid, which was recommended to me by a neurologist, but everyone’s body is different and reacts in different ways.

      So is it necessary to take supplements? 

      Regardless of the cause of your peripheral neuropathy, boosting the health of your nerves through proper diet and supplementation can help slow the spread of your symptoms. However, the sooner you and your doctor can pinpoint a cause, the quicker you can identify and begin the most effective treatment for your symptoms.

      While this is by no means a comprehensive list, these medicinal and herbal suggestions have definitely gotten a lot of praise.

      Disclaimer: Please check with your doctor or practitioner before taking new medicines. Make sure you’re not allergic.

      Magnesium 

      Spinach magnesium intake for HNPP hereditary neuropathy

      Magnesium is said to help maintain nerve function, mostly by reducing pain, calming overactive nerves and relaxing your muscles. This calming effect on nerves and muscles helps reduce pain and improve mobility. According to a 2010 study, a major mechanism of pain is the excessive stimulation of a brain chemical called “NMDA.” Magnesium seems to settle down this pain-carrying neurotransmitter without the toxins of other medications.

      Low levels magnesium may result in fatigue, cramping and weakness – among other symptoms.

      Alternatives to supplements: 

      So from where else can you get your magnesium intake?

      • Spinach
      • Pumpkin seeds
      • Beans and peas
      • Fresh fruits
      • Quinoa

      Vitamin B

      Salmon for Vitamin B12 intake HNPP neuropathy

      One common cause of peripheral neuropathy is a deficiency of B vitamins, particularly B12. If a B12 deficiency isn’t treated in a timely fashion, the nerve damage can become permanent. It is the most important link in the chain of the various B vitamins.

      However, without vitamin B2 and B6, your body’s ability to properly absorb and make use of these vitamins for the benefit of your nerves becomes significantly handicapped.

      Alternatives to supplements:

      The NHS website has laid out some of the foods that are high in B12:

      • Meat
      • Salmon
      • Cod
      • Milk
      • Cheese
      • Eggs
      • Some fortified breakfast cereals

      Folic Acid

      Folic acid, known as folate in its natural form, helps the body form healthy red blood cells and reduce the risk of central neural tube defects. Folic acid is needed to activate the B12. B6, B9 (folic acid) and B2 are needed for B1 to be absorbed.

      If you’re taking folic acid supplements, it’s important not to take too much, as this could be harmful.  Folic acid can actually be absorbed by having a healthy diet. Adults need 200mcg of folic acid a day. It can’t be stored in the body, so you need it in your diet every day.

      Alternative for supplements:

      Folate is found in small amounts in many foods:

      • Broccoli
      • Brussel sprouts
      • Liver (but avoid this during pregnancy)
      • Spinach
      • Asparagus
      • Peas
      • Chickpeas
      • Fortified breakfast cereals

      Potassium

      Banana potassium hereditary neuropathy HNPP

      Potassium helps generate energy so that the nerves can transmit messages. The way it does this is called the sodium-potassium pump. Essentially, there is more potassium inside your cells and more sodium outside. When the gate that allows one or the other to leave or enter the cell opens, potassium leaves and sodium enters. This “pump” generates the energy for your nerves to transmit messages.

      Alternatives to supplements:

      • Sweet potato
      • White and kidney beans
      • Dark leafy greens such as spinach
      • Avocado
      • Bananas
      • Certain fish – Wild salmon, tuna, halibut, flounder, and Pacific cod
      • Milk
      • Tomato sauces
      • Dried fruits -Apricots, peaches and figs

      Acetyl-L-Carnitine

      Acetyl-L-carnitine (ALC) is a naturally occurring amino acid and is potentially effective at preventing peripheral neuropathy as well as lessening neuropathic symptoms once they have developed. ALC has been shown to influence neurotransmitters (NTs), including acetylcholine (organic chemical that works as a neurotransmitter) and dopamine.

      Disclaimer: Please check with your doctor or practitioner before taking new medicines. Make sure you’re not allergic and it doesn’t interact with other medications.

      Turmeric

      Turmeric for hereditary neuropathy HNPP

      Turmeric is an ancient spice commonly used in Ayurvedic and Chinese medicines to treat digestive issues, inflammation, skin conditions, and wounds. Turmeric is also known as an anti-ischemic agent, which helps in regulating blood supply to peripheral nerves. Lack of blood supply to nerves is of the key reason for these nerves not working properly.

      Although there is not currently much research to support its standing as an effective anti-inflammatory or that it can benefit nerve issues, there is much anecdotal evidence that it has its advantages.

      For more information on how to consume it, visit TheKitchn.com.

      Hemp Oil

      A slightly more controversial product is Hemp Oil or Cannabidiol (CBD). For many HNPP sufferers, this is harder to come by depending on the laws of your country. However, it is said to benefit users. Two major cannabinoids found in cannabis, activate the two main cannabinoid receptors, which is said to regulate the release of neurotransmitter and central nervous system immune cells to manage pain levels. There are foods and liquids containing hemp that can also be consumed.

      Some of the most popular forms of hemp foods include:
      • Whole hemp seeds
      • Shelled hemp seed (hemp hearts)
      • Hemp oil
      • Hemp protein
      • Hemp milk

      Omega 3 Oils

      Walnuts omega 3 peripheral neuropathyResearch from Queen Mary, University of London suggests that omega-3 fatty acids, which are found in fish oil, have the potential to protect nerves from injury and help them to regenerate.

      Omega-3 fatty acids are vital for the body’s normal growth and development because the body cannot manufacture omega-3 fatty acids. Therefore it has to be consumed in foods such as oily fish.

      Foods that include Omega 3 include:

      • Flaxseeds
      • Fatty / oily fish – wild salmon, halibut, mackerel, tuna
      • Walnuts

      Coq 10

      CoQ10 (CoEnzyme Q10) is an antioxidant naturally produced by your body. As it relates to your nerves, CoQ10 plays a role in correction mitochondrial dysfunction, a condition that can lead to a decline in nerve health and cause nerve related problems or pain. Long-term low dose CoQ-10 inhibited neuropathy induced pain, according to a study.

      Coq10 can be found in:

      • Fish- Sardines, Mackerel, salmon, tuna, herring
      • Beef, Lamb, Pork- organs like heart, liver, kidneys
      • Eggs
      • Spinach
      • Broccoli
      • Cauliflower
      • Wheat-germ
      • Peanuts, Pistachio, sesame seeds
      • Soyabean oil, Canola oil

      Zinc

      Dark chocolate for zinc neuropathy HNPP

      Don’t go crazy with zinc supplementation because it can cause a secondary copper metabolic problem, however, there are plenty of foods that are naturally high in zinc.

      Why do you need zinc for peripheral neuropathy? It turns out that zinc plays a part in modulating the brain and body’s response to stress all along the way. The highest amount of zinc in the body is found in our brains, particularly in a part of our brains called the hippocampus, and it is critical to cell signalling. But you don’t need a huge amount to fulfil your daily quota which can be done quite simply.

      Foods that are high in zinc:

      • Oysters
      • Crab and lobster
      • Meat and poultry as well as eggs
      • Legumes – hummus, chickpeas, lentils, edamame, and black beans
      • Vegetables – mushrooms, spinach, broccoli, kale, and garlic
      • Nuts and seeds
      • Whole grains
      • Fortified breakfast cereals
      • Milk and dairy foods
      • Dark chocolate

      If there are any more supplements you would like to add, please feel free to comment below! Do these particular products work for you?

      Dark chocolate as a medical aid makes me very happy indeed.

      UPDATE: Since writing the initial post, a few other supplements including Coq 10 and Omega 3 Oils has been suggested and added above.

      HNPP · Mental Health · Physical Health

      HNPP and Tai Chi

      hand-leg-training-exercise-medicine-lifestyle-801190-pxhere-com.jpg

      I’ve heard on the HNPP grapevine, Tai Chi (太极拳) is supposed to be incredibly beneficial for people with nerve disorders. You may think it’s only for a certain generation but believe me the science proves otherwise.

      According to a 2010 study published in the American journal of Chinese Medicine from the Department of Kinesiology at the Louisiana State University, Tai Chi actually increases the nerves’ ability and speed of sending signals back to the brain and spinal cord. While that might be useful for the scientists and the academicians, is it useful for us?

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

      The best way to put it to the test is to try out some of the leading workouts. One of the moderators and organisers of the annual HNPP conference, which takes place in the US, recommended the video below.

      This is perfect for beginners, zero strain on the limbs and it gives you a good idea about how to do / remember the positions and movements.  It will then give you access to much more complex and challenging poses. The best thing is that no modifications are necessary! I’ve tried this personally. The first time I had to close the curtains to stop peering eyes out of sheer embarrassment. The second time, I did not give two hoots.

      As you know, with our failing limbs, balance tends to go out the window. You can only be propped up by chair for so long, hence finding exercises that tackle that very problem are essential.

      Something to keep an eye on

      However, there are a few things to take into consideration even with the gentle pace of the movements.

      • Do not roll the knees, this could actually have an adverse effect. Make sure your hip is moving towards the different sides and plant your feet firmly on the ground.
      • Try and get some padding for your feet even if it’s something light as every time you press down it puts more strain on the calf.
      • Keeping a straight spinal posture is essential as you could end up hunching and hurting both the upper back and lower back.
      • A good tip that I’ve heard is to slightly lower the chin so you’re stretching the back of the top of your vertebra in the neck. This is mostly for people who can’t naturally keep their back straight.
      • Try really hard not to hunch or stretch the back too much backwards. The aim is to keep the axis of the spine in one place and completely straight.
      • Move the pressure downwards towards the legs in order to strengthen them without too much strain.
      • And finally do the movements slowly. Take your time, and enjoy the moment.

      For those who want to try something a little less taxing, this video has been recommended by the Foundation for Peripheral Neuropathy, in which they say that the more someone with PN learns to use their whole body for both exercise and simple daily tasks, the less pain they experience.

      Once you’ve mastered these tips how about giving some of these videos a go? I particularly like this one as it is gentle and the instructor or Sifu explains every movement throughout. No Grand Canyon necessary.

      This one is definitely only for slightly more advanced students and those who are having a good day. DO NOT ATTEMPT if you have any foot or wrist drop.

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

      With this, it’s important to keep an eye on your knees, especially as you can’t see the instructor’s. Hence I’m going to lay out the pose without the water (sorry folks!) The Sifu (master) also puts some good tips while the video continues to play, so watch the pointers. (Don’t worry, you won’t have to do the move above).

      Make sure when you do the bend, your knees don’t track outwards. Keep them aligned going straight. Avoid doing a sumo squat.

      tai 1

      Here is the posture, Rise and Sink, out of the water:

      tai 2

      Similarly with the next move, make sure the knees don’t track outwards, and the bend is extremely slight. If you have hand splints and wrist drop, you don’t have to do the Anjali Mudra (hands in prayer) pose.

      tai 3

      It starts getting a little complicated from here on out so look away if you want to stop.

      Bend the knees in the same direction to avoid unnecessary strain. Otherwise you’ll end up with one facing forward and the other on the side.

      Similarly, with the Withdraw and Push pose, keep the knees in the same direction and bend only slightly.

      tai 6

      This goes without saying. If you have foot drop, you’d surely fall over doing this move so DON’T EVEN ATTEMPT THIS.

      tai 7.png

      The next move is rather complicated and should be done on a good day in terms of your health. It literally consists of turning back and forth, first to your left and then when you reach backwards, turn back right to the front.

      Put the leg back on the side you’re supposed to turn, so that if you are turning left, use the left leg to spin around.

      Posture nine will require watching the description and movement carefully, described as carrying a ‘silk worm’, moving it side to side but the footwork is similar in terms of keeping your knees in the same direction.

      The last pose is actually a bit of a workout on the arms! Just holding a ‘ball’ up for several minutes can make the lactic acid start building.

      tai 10.png

      And I’m sure, after confusing your body into oblivion, it will be happy that it’s had a bit of a workout albeit a slow one.

      HNPP · Mental Health · Physical Health

      HNPP and Yoga

      Yoga on the beach

      Okay, I’m not going to lie, most of the positions (even the image above) are slightly off limits depending on how severe your HNPP is. That being said, it’s still doable, but it will take many modifications as necessary.

      Why should you do yoga?

      Despite the possible injuries it can cause, focusing on areas such as your back and shoulders will make sure you won’t become completely bedridden, and crippled with back pain (this happened during my early days). It was also recommended by my neuro physiotherapist so at least that’s good news!

      Here, I will walk you through a YouTube video that I regularly use for CHAIR YOGA. Yes, you heard me correctly, it exists and it still works. The main focus of yoga is to allow yourself to take time out from the stresses of worrying, because it’s easy to disconnect from your body when you loathe it for failing you. But with some changes, yoga can keep many people from completely falling off the edge.

      I’ve never been particularly good, but I’ve practiced Hatha, Sivananda and Ashtanga for most of my life. Believe me, if I can do it, I’m sure you’ll do an even better job! If not, no matter, your body needs to recover.

      Remember, NEVER do any moves that can potentially injure your nerves. Symptoms include a tingling sensation while doing the move or numbness. Stop the pose immediately if that’s the case. You know your body better than anyone. AND KEEP THE CASTS / SPLINTS ON.

      ADDITIONAL INFORMATION: Since writing this post, a very important issue has come to my attention by a fellow HNPP’er. Remember, breathing is the most significant part of yoga!!! Throughout the exercises, please breathe continuously in a natural flow in order to keep the muscles moving and stop lactic acid from building.

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

      So first things first – the chair has to be cushioned. Doing exercise on a metal chair could actually tweak the nerves, so either put a seat cushion on an ordinary chair or use an armchair that has the sides free! I actually use my sofa surrounded with cushions to grab at any point during the sequences.

      Yoga 1

      Second of all, do not put your palms together into the Anjali Mudra position especially if you have wrist issues including wrist drop. In this case, you can just keep the arms up without contact.

      yoga 2

      I really don’t recommend the next move for people with hand issues. In this case, lightly intertwine the fingers together, keep head bowed and stretch forward. You can even hold one hand over the other instead and reach upwards into the next movement.

      yoga 3

      When holding wrists with the other hand, make sure you’re in a completely comfortable position to do so. Never do anything that makes the hands start to tingle or go numb.

      yoga 4

      In the next move, the hands can actually lightly touch the base of the skull on the back of the neck, looking upwards, without bending the wrists in this awkward position. The main stretch is the outward elbows and the neck stetch.

      yoga 5

      This move is particularly important for the back and shoulder blades. It was recommended by my neuro physiotherapist. It consists of bringing the shoulder blades back down together practicing with breaths in and out.

      yoga 6

      I wouldn’t suggest crawling on the floor for this move. The yoga instuctor also gives the suggestion to keep the arms on the thighs. Definitely stick to that.

      yoga 7

      Make sure your legs have padding underneath for this, and position the end of the chair right in the middle of your thigh avoiding the nerves near your hip or near the knee. If you have any kind of foot drop just sit in that direction. This sequence will be repeated on the both sides.yoga 8

      Eagle poses tend to tweak the ulnar nerves in the arms, so you can just lightly press the arms together instead. Do not lean down on to your knee, it will start blocking the nerve in your leg quite quickly.

      yoga 9

      At the beginning of the next sequence, the instructor pulls her arms backwards, intertwining the fingers. Feel free to just put one hand on top the other and reach backwards keeping the wrists straight.yoga 10

      In the twisting pose, do NOT lean on your leg. If there are no cushions available for your lower elbow to lean on and you’re feeling especially fragile, avoid this and just twist the body upright to that side.

      yoga 11

      As Laura (the instructor) also says, if the Warrior Two position (Virabhadrasana) tweaks your back leg, revert back to the original Goddess position.

      yoga 12

      Do not lean your arm on your leg during the side angle pose. In this case, just let your arm dangle towards the floor.

      yoga 13

      As mentioned before, eagle poses can tweak the arms so bringing the arms together lightly and stretch the neck, looking upwards. Similarly, I wouldn’t cross the legs.

      yoga 14.png

      In terms of holding the leg, if you can then do. If not, then try hold it underneath the thigh, and while twisting backwards, keep the leg floated and just lightly keep the hand against the knee, palm facing outwards.

      yoga 15

      And that’s the majority of modified moves! I hope it helps, it definitely gives your back a good stretch. Doing this daily keeps the strength around your spine.

      Good luck yogis!

      HNPP · Mental Health · Physical Health

      Introduction to HNPP

      tree-plant-sun-leaf-flower-pattern-927384-pxhere-com.jpg

      Welcome. If you happen to have come across this site because you’re newly diagnosed or an old veteran when it comes to Hereditary Neuropathy with Liability to Pressure Palsies (HNPP), I’m glad you’ve made it.

      First of all, this is an introduction to what exactly it is to those who aren’t aware. And it’s also a quick chance for me to say how and why I’ve made this website. No, I’m not going to do a whole “Dear Diary” kind of blog. It’s going to be a compilation of tips and advice that I’ve gathered especially for those with HNPP who are struggling to stay afloat on the best of days.

      So what is HNPP?

      It is a genetic nerve disorder, similar to Multiple Sclerosis and Charcot Marie-Tooth Disorder in terms of symptoms, but it affects the peripheral nerves instead of the brain and the spine. It’s also hereditary, so there’s a big, fat chance someone in your near or distant family also has it.

      25ec314e2a1f9b2f95528a845b1cd33a

      It’s the defect and deletion of one of the PMP-22 genes, where everyone usually has two. So when you move or lean in certain ways, it can leave the nerve damaged for much longer than usual and can grow back incorrectly.

      The symptoms can consist of tingling and numbness to loss of mobility of your hands and legs. It’s different for everyone, and given that only 2-5 out of 100,000 have been diagnosed with it, there’s very little resources and research out there.

      And that’s where I come in.

      Why have I made this blog?

      Well, without stating the obvious, I’ve been diagnosed with HNPP – and only this year after going to a yoga retreat (yes, ridiculous I know). Both my sister and I have it so that’s a nice family bonding session we have right there. But mostly, I created this because I found a lot of people can end up feeling desperate and isolated with this condition, and there seems to be nothing to address the day-to-day issues – mental health, physical wellbeing and strategies in coping. So without further ado, I hope that I can help in some small way just to acknowledge WE DO EXIST.

      Hereditary Neuropathy Foundation

      To donate, please find the link to the Hereditary Neuropathy Foundation here.

      Please feel free to comment and give advice whenever you feel like it. (No trolls allowed).