HNPP and Alternative Supplements

Jul 4, 2017Jul 24, 2017 suswatibasu4 Comments

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

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

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

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 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

Research 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

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

Jul 3, 2017Jul 4, 2017 suswatibasu4 Comments

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.

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

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.

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.

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

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.

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

Jul 3, 2017Jul 5, 2017 suswatibasu3 Comments

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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

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.

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.

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

Featured suswatibasuLeave a comment

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).