A New Page – HNPP UK: links

I’ve added a new page to the menu in place of a link to my HNPP_UK pages. It’s just the first page from that site, with updated links, and some new additions.

To view, clicky menu option HNPP UK links (It’s not just UK links, the name is a hangover from the original website.)

Or click HERE

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HNPP Dot Org

For some unknown reason HNPP.org is no longer online.

It had a rather old-fashioned web interface, but other than that it had a wealth of information about HNPP which was gathered over a long period of time some of which pre-dated the internet age. It had an HONcode kitemark.

I feel lost without it.

However, thanks to the Wayback Internet Archive Machine the information can be found at this address

https://web.archive.org/web/20161126113558/https://hnpp.org

I will temporarily update the links on this blog to point to this address, and hope that at sometime HNPP.org makes it’s way back online.

 

Double (multiple) Crush Nerve injuries – an HNPP perspective

Looking in my drafts folder, I found this post, which I believe I may have posted elsewhere. Six years ago… doesn’t time fly. Amended a broken link, but I thought it was time for this to be posted here. I suppose ‘crush’ in HNPP terms can actually be rather minor pressure, but I think it is a fairly common presentation in HNPP. So without further… Here it is… zombie post no more…

Generally speaking the consensus among medical professionals is that Double crush injuries, ie two (or more) nerve entrapments along the same peripheral nerve bundle is relatively rare. It has been suggested that some refractory (those not responding to treatment) carpal tunnel injuries may be due to another peripheral nerve entrapament/lesion at a proximal (closer to the spine) location, such as the shoulder or neck.

There is some controversy surrounding this syndrome and some believe that it doesn’t exist. In terms of treatment and the success or failure of it for carpal tunnel in the absence of any other nerve pathology, it may indeed be debatable. But what about the cases where other nerve pathology exist, for example another peripheral neuropathy.

Having been diagnosed with HNPP (Hereditary Neuropathy with liability to Pressure Palsy) it has become fairly obvious to me that such a problem of multiple nerve compressions do exist. With HNPP these compression could be momentary and of fairly short duration but will cause prolonged entrapment-like symptoms. I would have thought that double crush syndrome would be far more common in HNPP than in the general population, simply due to the increased liability.

Part of of the postulation for Double Crush, is that the distal compression, eg Ulnar nerve entrapped at the elbow, appears to be far worse for the contributary factors due to a proximal compression of the same nerve branch, for example a compression at the axilla or the neck at vertebrae C8 and or T1. (Diagram of Brachial plexus and nerve division)

The upper nerve compression (proximal) is likely to have much wider effects than the lower compression (distal), but is it possible that the lower compression can appear much worse due to rather trivial compression at the higher (more proximal) location.  It has been my experience that this does indeed happen in HNPP, and can cause sudden worsening of a lower palsy, i.e. an area of sensation loss with varying degrees of muscle weakness.

Another example from my own experience is that of foot drop and lower leg neuropathic pain, which can worsen considerably when I have problems of the lower back, with sciatica in attendance. Any neuropathic pain seems to be amplified at the distal location during these times as does any sensation loss and muscular weakness.

Perhaps this is more likely to happen as the person with HNPP ages, as the multiple locations of previous palsies begins to take it’s toll. It can make this highly variable condition even more unpredictable and difficult to manage.

HNPPWellbeing Blog

I must give another heads up for this blog. It’s great that another HNPP blog is active and posting regularly, and what makes it just so good is that it is so well written and offers plenty of tips and suggestions of how to cope with the type of problems that HNPP can throw at us. Lots of positivity over there.

So, if you have HNPP or know of someone with HNPP, a Doctor or other health professional (do they have time to read blogs), or anyone else, then get yourself over to

HNPPWellbeing

and grab yourself a slice of positivity

You know it makes sense….

PS. And just in case you missed the links here it is again

https://hnppwellbeing.com

Genetics Home Reference

I’ve always thought that the information given on this site (Genetics Home Reference) to be easy to read, not too much jargon and providing plenty of links to other sources. The information on HNPP can be downloaded as a pdf file. So it’s a great place to start gathering information for the newly diagnosed patient and their family.

I have linked to it before, but I see that the link has changed and the website has had a significant update.

Genetics Home Reference – Hereditary Neuropathy With Liability to Pressure Palsies

I’ve noticed in the last few days that the HNPP.org website appears to be offline. I hope this is just a temporary glitch, but in the meantime the above link should provide some essential information.

 

Updates – Links and Feedback

I’ve updated a link to a facebook group which had been titled HNPPUK but is now

HNPP AND CMT / NEUROPATHY SUPPORT

It has, dare I say it, a slightly more relaxed feel to the group than some of the others, but as always it’s ‘horses for courses’. I am ’employed’ by the group as a meeter and greeter.

A post from 2014 on Allodynia in the ‘A Day in The Life’ category mentioned that I had developed a burning pain in my upper arm which seemed to be triggered by the merest touch. At the time I didn’t know the cause, but that was discovered a few weeks later. I didn’t however update the post. But I will do now.

It was very simply caused by reaching for the on/off switch for my bed side lamp. The switch was on the cable and I had to reach down whilst lying in bed to get to it. It was only because we had switched bedrooms which had a touch sensitive lamp that I realised after a few nights that that painful spot was diminishing. Within a few weeks it had gone. The lamp was abandoned and replaced with one with a simple easy to operate pull cord.

Tai Chi and Me

Just thought I’d document my experiences of Tai Chi, and finding a group suitable for me.

I’ve found that there are many variations of Tai Chi and many different teachers with varying philosophies and teaching  attitudes. Not all have suited me.

My first encounter with Tai Chi was around 1997. I had been struggling with the effects of what was thought to be Meniere’s Disease for several years, and in 1995 it was confirmed that it was affecting both of my ears. I had hoped that the disease would burn itself out, and in some ways the acute episodes of vertigo had moderated but I was left feeling off-balance and generally dizzy most of the time. I thought my general health and fitness was beginning to suffer through being sidelined so often by this disease. I was getting back pain both lower, middle and upper, and there were strange things going on with my feet that I couldn’t quite explain at the time, but I know now to be the first signs of impending foot drop.

So I decided it was time to get fit again. I tried to learn a little through reading books, and although the book was very good, extremely detailed in fact, it became obvious that I needed a teacher and to take part in a group with other learners.

The First Foray

I found a group in Bristol UK, that seemed to offer what I wanted, so happily went off for my first session. Although the teacher was a very pleasant chap, he tried several times to correct my back posture, by physically pushing and pulling me into position. I could feel the tension at the time, but it was the next day when I realised I had been pushed too far. The pain around my back into my ribs was excruciating. I decided right there and then that I would not go to those classes again.

Another Attempt – Success – Shibashi Chi Kung

A few years later I tried again. It was before my diagnosis for HNPP and I was still struggling with balance problems and the continued problems with my feet. So I booked up sessions of Tai Chi Shibashi Chi Kung which was on offer through a local council run day class. Now this was more like it. These were gentle classes, where each session started with a short period of meditation, followed by gentle warm up exercises and then learning an 18 step mini form of CHi Kung. As far as I can gather Chi Kung or Qi Gong is a form of Tai Chi Breathing exercise (This might not be correct, but that is how it seems to me). Each movement is repeated a number of times, and then moves into the next step.

One of the main principles taught was that of the Soft Limit. This was taught as not going beyond that which is comfortable and relaxed, as soon as tension (or pain) is felt move back until that recedes, that is the soft limit the maximum point where one remains relaxed, in balance and centred. An important aspect of this is that no two people are the same, so don’t try to emulate another, always remain in control and within your own soft limit. As I came to learn with HNPP my soft limit can change from day to day and even minute by minute. This is such a valuable lesson and technique for learning just where my body is day by day, sensing out to find which parts are working and which are not. It really is a focused way of listening to the body.

2017 – Starting Lessons Again

Over the last few years I had been asked by the Respiratory Nurses at my local health centre whether I would consider taking up a Pulmonary Rehabilitation course. Now, I had been on one of these courses back in 2007, and although it was well worth doing the difficulties came with their lack of knowledge of HNPP. Not only HNPP but the combination with inner ear balance problems and COPD/Asthma. Although I was keen to take up some form of regular exercise I thought that this would be more frustrating than helpful. As luck would have it I had an appointment with my Neurorehab Dr. in the summer, and he suggested I could attend a Falls Clinic, which very conveniently was at our local hospital less than 1/4 of a mile away from home.

It was good going to the Falls Clinic, just exercises for balance, a bit on the bike machines, and a some group work with the other members. It’s actually good to be part of a group, and to be taking active steps toward maintaining physical fitness. All tailored to meet my needs.

As the course came to an end they suggested that I continue at the local Gym with a rehab group run by physiotherapists. This sounded great, but when I got there my abilities had been over estimated and the types of exercise available were not at all suitable. Thankfully the physiotherapist could see that this was not a suitable group for me, and during a discussion with her at my home I mentioned my liking for Tai Chi, but that I needed an easy going group which accounted for people with less than optimal fitness. She put me in touch with Swansea Tai Chi and the classes run for the U3A  (University of the 3rd Age).

I am on my 6 or 7th session. My partner comes along with me, and there is a group of between 6 and 10 people, some with obvious health difficulties and others looking for exercise in their retirement.

Whilst they haven’t mentioned the Soft Limit specifically, it is implied in all the teaching so far. It definitely is not competitive like the first group I went to back in 1997.

I have to be careful not to overdo any exercises, not so much the Tai Chi form or the Tai Chi Breathing, but the warm up exercises. They are quite simple limbering up movements, testing and exercising the joints and loosening muscles. But they have caused me problems, particularly with neck and shoulders, and hips. So arm stretches, hip rotations and head/neck rotations have to be carried out gently, with adherence to the soft limit, ie easing off when I feel the slightest bit of tension or pain.

I can foresee some problems with the Tai Chi breathing exercises too. There are a few which are designed to stretch the ‘channels’, and I will need to be careful not to overstretch.

Overall I’m enjoying it very much.