HNPP · Mental Health

How to cope with grief and loss with HNPP?

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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 · Mental Health · Physical Health

HNPP and Tai Chi

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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:

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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.

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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

Introduction to HNPP

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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.

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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).