Blog Name Change – HNPP Journal

I’ve finally changed the title of the blog. It is simply HNPP Journal: My life with HNPP rather than the Slice of life. I liked the old title less and less, but was concerned that if I changed it I would cause an internet meltdown.

Why was it called Jon’s Slice of Life in the first place?

When I started the blog and was thinking about what to call it, I was listening to ‘It’s All Too Much’ a cover of the George Harrison song performed by Steve Hillage on his album ‘L’

From the chorus:

All the world is birthday cake
So take a piece but not too much

So with that idea, of HNPP only being just one aspect of my life, it became ‘A slice of life’

But as time has gone by the cringe factor has increased, and so I felt that a simple ‘HNPP Journal: My life with HNPP’ would be a better title. So there it is…

 

Tai Chi Diary 12/7/17

Another session on Monday.   We learnt another QiGong step called, Distinguished Lord Combs Hair or as it’s known in Swansea the Morecambe and Wise Pose. It’s one which I will have to be careful with as it involves twisting and quite a bit of arm movement at shoulder height.

So far, we have done Taiji Breathing, Round fan covers the Moon, Buffalo Ploughs the Land, Distinguished Lord Combs Hair … and always close with Sink Qi to Dantien and Close. All the moves are synchronised to breathing, and each movement is repeated several times to the left and to the right, though some are centred.

Some of the repetitions can be a little difficult, I had to duck out of the last run through this week as I could feel my shoulders and hips beginning to complain. It will be good when I’ve learnt the whole form and can move between each step only repeating as is comfortable. I think we are only repeating the steps as an aid to learning, so once learnt I hope I can optimise.

A little bit of reading and searching online reveals that this type of Qigong is from the Daoyin Yangsheng Gong system for dealing with stress, and in particular this is the yin form, Weiji Wufang Gong. It is practised in various Cancer Care Centres throughout the UK.

More info HERE

There is a book written by Gordon Faulkner:  Managing Stress with Qigong

I struggle with the warm up routines, there’s a few involving lifting arms out sideways and my right arm doesn’t want to go there. Too darn painful in shoulder and upper arm. Hip rotations and upper body rotations have to be done with ease too otherwise middle back and rib pain will incapacitate me for several days afterwards.

The Tai Chi set itself is just so relaxing, getting the feet right and the weight distribution seems to be the key. Once I feel stable I can relax and I feel centred and grounded. A really nice place to be.

 

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.

Something New – Allodynia

I haven’t written a “Day in the life” entry for a long time. But I’ve been prompted to do so due to a new development, which I assume is due to HNPP.

One of my first persistent symptoms of HNPP was due to Ulnar nerve compression, usually when doing desk or table work. It first started to be a noticeable when I was in my late teens. It is a fairly regular occurrence and is so easy to trigger by such minor pressure that often I don’t notice that it is occurring until it is too late and my little finger and half third finger plus the outer aspect of my hand and sometimes into my forearm has gone completely numb. As long as I don’t aggravate it, sensation will gradually return over several days to a week.

Over recent years I’ve noticed that if I rest on my elbows I will get a sudden electric shock like pain shoot down the outer side of my arm, it’s a good warning, so pain which serves a purpose.

Several weeks ago I had a sudden inexplicable intense burning pain right in the bony groove of my left elbow, it lasted only 15 seconds or so, but was so intense that it really got my attention. It occured again several times that day, and seemed to be triggered by the merest touch and stretching or tensing my upper arm muscles.

Over several days this seemed to gradually move up the outer side of my arm toward my tricep muscles. I thought it must be a muscular pain, a strain or pulled muscle or tendon. For a few days it seemed to be moving toward the lower outer side of my arm and into my axilla, and chest, but thankfully it has retreated back to my arm only. However, what has developed is that that small area of my upper arm has become so sensitive to touch and movement, even the slightest touch results in sudden piercing burning pain. Stretching seems to bring on an almost cramp like aspect to it, but it is the burning sensations which really grab my attention.

I cannot understand what has caused it, could it be to do with the repeated ulnar nerve compressions, but then why would the pain move upwards. It doesn’t seem to be muscular, it is unlike any muscle strain that I have had before. And the sensitivity to touch seems to suggest that it is nerve related, though it might be too early to assume that.

Anyway, it’s there, it’s not making my life a misery, though it does give me a chance to yelp every now and then.

So what is Allodynia?

Here’s a wikipedia definition (pinch of salt and all that, so don’t rely on wiki to get it right)

Allodynia    ……             is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, which may feel like a burning sensation, and it often occurs after injury to a site. Allodynia is different from hyperalgesia, an extreme, exaggerated reaction to a stimulus which is normally painful.

And here’s the link to the rest of the wiki article,

Allodynia, a wikipedia definition

It will be interesting to see how it develops or improves, though at the moment I don’t feel too positive about it improving as my continuing problems with shoulder and upper arm palsies and ulnar nerve palsies, mean that it is bounded by two areas of nerve injury.  QI

HNPP UK Pages

Unfortunately, there is a slight problem with the HNPP.info website. It is currently hosted on two different servers, usually a redirect is in place which means HNPP.info is always reached in preference to hnppinfo.myby.co.uk

On Trying to update the website to remove old dead links and to put in a few more current links, I realised I have forgotten my login details for the HNPP.info website.

So I’ve updated hnppinfo.myby.co.uk but as yet hnpp.info is currently out of date. I’ve removed the redirect for the time being, so that the current version can be accessed. I’m hoping to get everything sorted soon. And mostly it’s not going to be a problem, but it would be good for both to be unified/sync’d .

 

Should I Stay or Should I Go

My posts last week were the first for nearly 10 months. I have been neglecting this blog and it has been bugging me for sometime that I’ve been doing that. Then last week I decided I needed a break from the facebook groups, I had a hissy fit about the DBEOH phrase being used, and on the spur of the moment left a message that I was taking a break.

I’ve realised that I cannot do both at the same time. Facebook demands quite a bit of attention, it’s like a noisy demanding child, and I don’t mean the people in the groups, but the whole facebook experience. So many reminders and notifications, and it’s all so ‘reactive’, it’s all, ‘now, now, now’. So I’ve come back here, and have a few ideas for regular blogging about HNPP, not a daily diary that I tried once before, just a careful approach to blogging about medical studies about HNPP, and the occasional post about my current state of health.

The Facebook groups are very good mind you, most people there are very thoughtful and caring, and provide a lot of support for one another, the groups are very well managed on the whole, with very few arguments and generally a laissez-faire approach to moderation. The facebook interface is quite good, but lacks a few structured features, like good topic/post headings which can make it quite repetitive when the same topics come up time and time again. It’s also very sequential and timeline driven, which means it gets harder and harder to see older posts. But it does have a large following and that makes it very dynamic and representative of how the condition (HNPP) affects most people.

I, however, can’t do both. So facebook groups will have to take a back seat. I’ll only be using it to keep in touch with family and friends through PMs. I’ll remain a member of the groups but I doubt whether I’ll visit them that often. As I’ve discovered before, it takes a while to get back into the swing of things after a break, and as I want to keep the momentum going here, I’ll not have time to get involved on the groups.

Sadly it seems that the Yahoo group for HNPP is naturally winding down. The Yahoo online interface just cannot compete with facebook, and it’s email system is so riddled with problems from spammers and advertisers that it has become too difficult for most people to use. However, if one can manage to cope with the online interface it is still a very valuable resource for information on life with HNPP, and although it has it’s difficulties of use, it is far easier to search than facebook groups, allowing users to pop in by year or month, and by following threads.

So, I’m neither staying or going, I’m floating free… (ho ho he he ha ha ha ha)