Dystonia Blog

March 26th 2010   23. Me again! I have now had some reprogramming again and go back to The Walton Centre again in four months time. So I hope, by then, I will have some real improvement to report to my consultant, instead of negatives and maybes! However, as I had suspected and reported in this blog, no improvement was no surprise as I was only being stimulated on one side of my brain! So I may as well write off 2009 and consider that my programming started in January 2010. Thoroughly unsatisfactory basically. My consultant says that when Medtronic introduced the rechargeable version of the neurostimulator they also changed the software. I had been programmed according to the old software. Just as well I am a reasonably calm person! I am not so far very impressed, though I do acknowledge that the whole system is fairly 'cutting edge', even though DBS has been undertaken now for a good 15 years, as far as I know, though not for dystonia. The technology has no doubt evolved and the SOFTWARE HAS CHANGED!! It was originally used for Parkinson's Disease. Even my admission in January was somewhat chaotic and I wasn't seen by anybody medical until the Wednesday morning, having been admitted on Monday. I complained to the PALS officer, as this was so frustrating. Apparently, the admission letters need to be changed. I was told to arrive at hospital at 09.00hrs, however patients are not usually discharged until mid to late afternoon. The admission letters should say 15.00hrs. So at least then I would not have felt as if the Monday was a waste of time. Having left home at 08.00hrs and hung around all day until a bed was found at 16.00hrs I was tearful and exhausted. I was rescued by a concerned nurse in the end. Anyway, that was January. I now have to put 2009 and all of that behind me and move on to a much more promising future. Interestingly, I tolerated the programming on Friday without any ill effects at all, no fainting or feeling sick. Thank goodness for that. But the evening of the changes I was in a lot of pain at the back of my neck. I still take my numerous medications, most of which are for pain, and nothing touched this at all. So I just had to go to bed and, even then, it took a couple of hours to ease. It has eased since then, but there is no improvement in things yet. Too early. Guilty, I'm afraid, of not swimming yet. Perhaps the improvement in the weather will get me going! And it is improving, isn't it?! We've had some glorious balmy days, including the three days we were away near Sherwood Forest in early March. We had a wonderful break at the Warner's Hotel, Thoresby Hall. Talk about luxurious setting! Our room was very nice, if a bit chilly at first! Our room is here, just to   the left of the centre window, on the top floor. The views were spectacular, over the gardens and countryside. There need never be a dull moment at Warner's. There is something going on all the time, from archery, to shooting, ballroom dancing, quizzes, cabaret entertainment, walks, use of the spa, and something which may be unique to the Thoresby venue – The Thoresby Players. This little troupe of actors put on little 'vignettes' throughout the day based on historical scenes that occurred at Thoresby Hall. We really enjoyed 'Long Live the King' based upon the celebrations of the staff at Thoresby Hall on the death of Queen Victoria and the accession of King Edward 7th. It was great fun, involving some of us guests in a minor way as the play went on. They also put on a play for the day, which was very good. Some of them were also involved in the musical events, including the excellent cabaret.   We met this interesting chap at Rufford Abbey, when we called on the way there. The ruin was very attractive. It was a beautiful setting and the swans and wildfowl on the river were lovely.   And on the way back we called in at Sherwood Forest and walked to the Major Oak. Think of a very large tree and quadruple it! It is thought to be somewhere around 1,150 years old, so it's no wonder it needs propping up! We've had a busy time! Will next month be as interesting, I wonder? Bye for now!	February 28th 2010    22. Hello again. First things first – not a single headache over my wiring since my discharge from hospital!! So I feel certain that they were due to the high amplitude setting. So pretty wonderful in that respect. There is still pain in my head now and then, but not over the wiring, thank goodness. I wouldn't say anything very dramatic has changed but MAYBE I'm a bit straighter and MAYBE the movements are, at times, a bit more settled. I do settle to sleep more easily, but I can't yet settle on my right side. I will be honest and admit that I will be nervous if the amplitude is increased when I go back at the end of March, but I do know they will want to, and probably do need to, increase it to stop even more movement. There is still a fair amount of movement and tilting to the right, as well as pain on the right side, which is when my shoulder tends to rise as well. No pain any more on the left side, strangely.   I have started going regularly to choir practices again and we have four concerts this year to look forward to. I am hurting by the end of a rehearsal, mainly at the base of my skull, but it is manageable. I do still have a rest every day and I certainly cope better with the pain when I've had a rest. It makes the evenings easier and I haven't needed a shoulder massage now for a good 2 weeks. I've bought a new HoMedics percussion massager, having tried my daughter's. It really does work very well. Eases the muscle pain to a huge degree. But at least I don't need it too often. Confession time though – I still haven't had a swim! I decided last week that I would go this week, but this week ended up quite busy, so I haven't made it yet. But I WILL! Is anyone else fed up of the weather? The one beautiful Spring day we had last week, Tuesday I think, I went out in the garden and pruned the roses. It was balmy and pleasant and I really felt uplifted, as if Spring was coming after all. I got the roses pruned and some more cutting back done, even managed the Acer. (That in itself indicates that my neck is a bit better, as gardening, especially pruning larger shrubs, is challenging). Then the freezing weather came back! The following evening the roads were so icy I was setting off through the village when I glided gracefully across the road in my car (only crawling along, don't worry!). So I decided not to go out after all. But the aconites and snowdrops continue to fight valiantly against the icy weather. I'm looking forward to the numerous little crops of snowdrops multiplying into bigger crops and providing a carpet of snowdrops in future years. Meanwhile, since I took these photos a couple of weeks ago, the primroses are flowering, too, so the garden is looking quite pretty. The bulbs are all shooting up nicely too, and I'm looking forward to seeing the new purple tulips that I planted last year. I'm continuing to feed the birds and it looks as if we'll be doing that for quite some time. The blue tits and great tits enjoy the peanuts, while the green finches, goldfinches and sparrows enjoy the seed. We have a regular pair of collared doves that have come to our garden for some years now. They look very delicate when the pigeons join them on the lawn! Anyway, my friends now believe me when I say I was not depressed, just in so much pain that I couldn't function properly. What a relief to have some relief! One friend commented that I 'looked grey'. Well hopefully I'm a bit more pink now! I can now concentrate on other members of the family who are not well and need some support, which is an added benefit. Bye for now.
January 24th 2010  21.  Happy New Year! And so far an eventful one, too. You may recall that a couple of months ago I had intense headaches over the wiring in my head after re-programming, and that these had not completely resolved. Also that the spasm to the left was extremely jerky and very painful. Well, having been admitted to the Walton Centre I am happy to report that one of the senior doctors, although not the consultant initially, got to grips with the settings and stopped the jerky movements to the left. I suspected the programming was also responsible for the headaches and, as if to illustrate that point, I developed a dreadful headache whilst in hospital, after my amplitude had been markedly increased again. I was not convinced the consultant believed how intense these headaches were until the nursing staff witnessed my distress. Anyway, the final programming of the week (3 in all) was done by the Consultant and the amplitude was reduced. I have had some discomfort in my head since but not the same type of headache. Hurray!! The re-programming of the neurostimulator is not always pleasant and I clearly could not tolerate some of the settings that were tried because I became hot, nauseated and faint at one point. Quite disconcerting, though the doctor wasn't fazed! Anyway, they changed the settings and all was well again. Fainting happens due to disturbance of the Autonomic Nervous System. It's medical term is 'syncope' and it occurs because there is a temporary decrease in blood flow to the brain, due to a fall in blood pressure, a decrease in heart rate or changes in blood volume. The Autonomic Nervous System controls all these functions of the body, and more, and we are totally unaware of it unless there is a problem ….... I certainly think my autonomic nervous system was disturbed and as I already have very low blood pressure, I think it must have dropped a bit more! Well, so far so good. I feel pretty exhausted some of the time and am taking things easy, but am optimistic about these settings now. The best news is that I weaned off the Morphine again over the course of a week with no ill effects, so I'm pretty proud of that! My head is still moving around pretty constantly, but hopefully that will steadily improve. The pain in my neck and shoulders is still there and sometimes in different places from usual, but maybe that is because different muscles are being stimulated for the first time in years?? I must be getting most restful sleep at night because my husband reports that I am now still whilst sleeping – more still than for a very long time. Reading and thinking back over the last few months I realised how much I had given up because of the dystonia and the surgery, and I want to start some of these things again. I've picked up the clarinet again and have gone back to square one, making sure I get the 'embouchure' correct and my posture correct again, after a few months break. I am starting my choir again as I love singing, so next Wednesday I'll try a rehearsal and see how I get on. It is very friendly and laid-back there, so I can always leave early if needed. And I need to bite the bullet and start to swim once a week again! That will be the hardest one to motivate myself to do, so watch this space! It will all take a while, as I still feel a bit 'fragile'! I hope this latest excerpt has been more optimistic reading than recent months have. We'll see how it goes. Bye for now.	December 24th 09 20.  Hello there, and I hope you are enjoying the season of Advent, with lots of carol singing and walks in the snow!! Also hope you are not experiencing the more negative effects of the severe weather. Some Christmas anagrams for you (I like words, word games, code words, etc.) So try these on the family this Christmas 1)Armrest Itches – Answer:Christmas Tree 2) Inmates mop - Answer: Pantomime 3) Him Sweetener – Answer: Three Wise Men. Life is full of frustrations at the moment, as the pain is not completely under control despite slow release Morphine added to my daily drug regime instead of Tramadol. Even with the medication there is always some degree of discomfort/pain in my head around the wiring, as well as in my neck, particularly on the right side just below my ear. I would normally love walking in the frost or snow and I enjoy the cold wintry sunshine. But at the moment I can't face going out very much at all. I often start the day with ambitious plans to go somewhere, but they come to nothing as I can't face the short drive to the garden centre or wherever.............So thank goodness for my friends who walk every Tuesday morning. Their company takes my mind off my neck! Distraction is a technique we discuss in the Expert Patient Programme. Often it might entail doing something like counting backwards, trying to remember nursery rhymes, etc. - anything to provide distraction in order to complete a task of some description that can seem onerous, but that we need to complete And on Tuesday mornings my fellow walkers are the best form of distraction! We have not felt like dressing the house up with too many decorations, but the tree looks great and we always put our family presents under it during Advent, and the cards look very festive. Thank goodness for shopping on-line! It may not hold the excitement of real shopping, but at least you avoid the queue at the checkout! One of my ambitions for the future is to do some 'real shopping' again – actually choose things by smell and touch and not just by a picture!! However, despite the frustrations I am looking forward to spending time with family and going to church and singing my heart out. And thank goodness for my husband and the 'kids' who are endlessly supportive. And I now have a date for admission to the Walton Centre for a review – roll on 11th January!! The photograph was taken during the snowfall earlier in the year. We have ice but little snow here so far.     So Merry Christmas readers and here's to a peaceful New Year, with blessings abounding and good health restored!
Monday 30th November 2009  19.    The Oxford English Dictionary describes 'progressive' in relation to disease as “continuously increasing”. And that is what this disease is doing at the moment. Interestingly, the next word my eyes alighted upon in my dictionary is 'inhibit', which is exactly what I want the Deep Brain Stimulation to do to my cervical dystonia!! Things are a bit grim. Even controlling my head for long enough to write this on the word processor is hard. Looking back a year, my father had been very ill and I was looking after his house/him, with the help of family members. Not easy, and, granted, I was having to pace myself, rest a lot and I needed massage, etc., to get me by. I simply could not do it now, because the pain is too intrusive, and the spasms, especially the twist to the left are so marked that I can only drive very short distances (about 5 miles or I get worried that my concentration MAY wane), and I have had to stop swimming because of the transport problems. I really need someone to go swimming with – N.B. see about that in the New Year. Also looking back I was advised by my brother, to look into The Bowen Technique – gentle osteopathy – so now may be the time to do that. Another friend urged me to try Acupuncture again. Anyway, the upshot is that I am now on Morphine, because there was nowhere to go with my analgesia other than the morphine route. I am on the maximum dose of everything else already and Tramadol is not hitting the spot. I go to Liverpool tomorrow for a check up and am hoping my consultant may have some wise insight that will ease my symptoms UNTIL the DBS kicks in. At the moment I am on Oramorph and I will start tablets once I am reasonably settled on a dose that is effective, probably next week. I have stepped back from most of the things I am involved in, in the village, until I feel better. My friends have been concerned that I am depressed, but I know it is only circumstantial, so just have to keep my head above water for a few more months. Had a lovely weekend with my dearest friends which helped a lot. Spent a little time in the Cambridgeshire countryside and had lots of silliness – always a tonic. Also I discovered a long time ago that 'Yahoo' run lots of self help groups. So eventually I got in touch with the dbs group and have just had my first replies! I do continue to potter in my garden and I still enjoy walking with friends once a week. A friend took this photo a couple of weeks ago as we walked locally. The Expert Patient Programme is still really enjoyable and I've almost finished my first year as a fully qualified tutor. I have run 3 courses this year, and mostly the courses seem to help the folks who attend and many groups continue to meet afterwards in a 'support group' capacity, which eases the isolation of chronic illness so much. I can't believe it is only 4 weeks now till Christmas. We are mainly looking forward to catching up with friends and family. I am getting quite envious of friends who have grandchildren to share it with! I will write another blog before then and will update you of any good news!! Bye! UPDATE ALREADY! I will be admitted for investigations of the extreme movements in January. Can bear that wait – it's quite a relief to have said my piece to the Consultant and to be heard! Bye again!	November !!! 18   Bit late again, sorry. Not had the greatest of months and the age old problem of pain management has been at the forefront of my mind. The usual Tramadol, Gabapentin, Paracetamol, Baclofen and Amitriptilline mixture has not been quite 'hitting the spot'. So my GP suggested taking 4 hourly Tramadol instead of 6 hourly. Not very different really, so far. It is difficult – if I keep still for too long, for instance having a coffee with a friend and chatting – if it goes on for a couple of hours I stiffen up and am in agony later that day. So I need to get up and move around, move my head from side to side, etc. Similarly if I do too much physical activity I suffer with pain in the evenings in my neck and shoulders. So I am strict with myself with gardening, which seems to be a good thing for an hour, but no more. The Expert Patient Programme, for which organization I am a volunteer tutor, puts much emphasis on planning and pacing activities, so that is what I try to do. I can walk, especially enjoyable with company. The company is a pleasant distraction from the spasms going on in my neck. I went up to Liverpool Walton Centre just over 2 weeks ago and saw a very thorough lady neurologist who agreed that my wiring is tight and needs adjusting at some stage (hurray, someone agreed with my husband and I!) She also did a major adjustment of my neurostimulator. Fine. That evening started four days of intense right, frontal headaches, over my wiring. They were dreadful, quite frightening. I phoned the Walton Centre and enquired if this was normal. Apparently no one else has complained of this. I am certain it was due to my reprogramming. The other symptom was an intensely sensitive scalp – like minute shocks if I scratched my head or when I did my hair. Fortunately they stopped by the following Wednesday. But no improvement in symptoms yet, and I was warned it could take another year!! So that is a bit dispiriting, to say the least. To more pleasant things. Now is the time to get the garden ready for winter. So my friend and I have cut things back, weeded and cleared as much as we can. But the roses are still in bloom and my fuchsia is glorious. The sedum also look lovely, despite darkening as they head towards the winter. My euphorbia look fantastic with their lovely variegated foliage. And I have a wonderful red begonia, sadly can't provide the variety as my knowledge of plants is very limited, which began life as a gift house plant in the summer, grew and grew and needed re-potting. Outside it went and it is thriving, three times it's original size and laden with blooms! Well I can't provide a photo of the begonia, but I can provide two photos of my lovely plants during the summer. 'Nellie Moser' Clematis They always lift my spirits. Hopefully better news on the dystonia front next time. Bye for now. Monbretia or Crocosmia
Tuesday 29th September 2009  17  I can't believe it's almost the end of September and I'm late writing this blog! I could almost copy and paste the first paragraph of last months onto this. Very frustrating time. I'm still pretty exhausted much of the time – doing too much my husband would say and he is probably right. I go to bed every afternoon, otherwise the spasms get too much. I still have marked spasmodic movements to the left, my head is still tilting badly to the right and my right shoulder comes up to meet my right ear!! Pain-wise still also much the same, with good old Frankenstein's bolts most days and pain at the base of my skull and the muscles at the back of my neck. Do I sound discouraged and miserable? Yes you say!! But I was told it may take up to a year, so I have to be patient. Not my best character trait!I go back to the Walton Centre at the end of October, so my next blog may be more encouraging. It is now a little over 4 months since I was 'switched on'. The only positives I can report are that I think my head movements settle more quickly at night so I get to sleep quicker, and my husband says I move less while I'm asleep. So I should be more rested! I now charge the stimulator every other night and it takes about an hour. Easy, peasy and just part of my life now. We had a lovely trip up to the Staffordshire Moorlands are one lovely sunnny day. We are so pleased to have had this two weeks of sunshine and 'Indian Summer'. We went to Flash, which at 1518ft above sea level claims to be the highest village in England. The scenery around Flash was beautiful, especially around Axe Edge. Quite fancy going to The Roaches next as the rocky outcrops and craggs look stunning. The garden has been fabulous and the rose are now on their 'second wind' of the flowering. A late flowering, deep purple clemetis has been wonderful at the back and the 'Nellie Moser' at the front almost as good. Just persuading my husband to dig up an unnamed and unproductive shrub, so I can plant something to attract the butterflies instead. The begonia is now outside, very happy and thriving I'm pleased to say. It is time to purchase a new lawn mower - one with a grass box to make life easier. And, of course we will get one through zytech1.co.uk! Take a look at the brand new 'CATEGORIES' area of hubbies website while you're here. It's looking good! Meanwhile I am running two Expert Patient Programme courses over the Autumn, starting on Friday. So that will keep me out of mischief, and I always meet lovely people and learn something new. Am so hoping, and praying, to be able to report an improvement next month. Bye for now. Hey, almost forgot – have been wig free for almost a week. Thick, very short hair, with not much of a fringe yet, but can get away with it now!! Some good news after all!!	Saturday 29th August 2009 16.  Nearly the end of August. Where does time go, even when you are not particularly enjoying yourself!? Things are quite difficult at the moment. I'm still in the grip of dystonia, with frequent movements, some of which are very painful, and still have the pain that I've referred to as 'the Monster's bolts' either side of my neck. I had the stimulator settings adjusted by the nurse specialist at the Walton Centre, which seemed to make things marginally worse rather than better. At the moment, my right sternoclinomastoid muscle is very tight and looks very prominent. As the wiring runs down behind my right ear and alongside this muscle I was really worried that the wires could be pulling too, as the neurostimulator moves with the pulling of the muscle. And I get so very tired. Some friends have suggested I'm still getting over my three general anaesthetics, but I'm not sure. I need a rest most days, both to sleep if I can, but to ease the pain, too. Well, I had an appointment with the Consultant on Friday last week and had a bit of a moan about not knowing quite what to expect and about experiencing a lot of pain at the moment. He was very reassuring regarding the wiring, which has helped a bit, but, if I'm honest, I'm still a bit worried. He also hiked up the settings a fair bit, with the advice that 'things' should steadily improve over the next 3 months. If they don't he can try a different type of setting. Basically, be patient! So, I'm trying. VERY TRYING, MY HUSBAND WOULD SAY!! He reminds me frequently to drop my right shoulder and hold my head up straight, but it is easier said than done! He means well! But, life does go on and we've had one or two lovely trips out recently. We drove up to the edge of the Peak District and had a delicious lunch at The Charles Cotton Hotel, Hartington, then had a short walk along to the Manifold River. At the tea shop at the old Hulme End Station there was a clarinet and keyboard player entertaining the visitors with the music of Dave Brubeck and others. A beautiful mellow sound to greet you as you approached the tea shop on a lovely sunny day. Highly recommended! We also had a very pleasant trip over to Wightwick Manor, and enjoyed the William Morris interior and Pre-Raphaelite paints, etc. Absolutely well worth a visit to such a fantastic house, formerly belonging to the Mander's family – remember Mander's Paints from years back? I was pleased to have kept up our National Trust membership when we retired. The garden has been a great joy over the spring and summer and at the moment the clematis are blooming beautifully, three different types, one of which is supposed to be an early flowering variety, which now blooms twice in the year, April and July/August. The roses and monbretia (one of my favourites) are splendid. And I planted some winter flowering pansies last week with my husband's rather reluctant help. They're looking good. I was also given two different types of begonia over the summer, as house plants. They drink like fish and keep me busy watering them, but they're doing well. So there are plenty of joyful things going on, too, to keep me going, despite the pain. Most of all though, I am longing for some improvement, so maybe next time............. Bye
Saturday 25th July 2009   15. Hello again. Things are a bit disappointing at the moment as I am not getting any benefit from the DBS at all. Having felt some small change at the beginning, especially when sitting and having a conversation with someone to my right (always the trickiest as I find it very hard to look to the right) that benefit has worn off completely. When I saw my consultant two weeks ago we both agreed that things had completely worn off. So I hope to be back at the movement disorder clinic at The Walton Centre before the end of the month. Now that the stimulator is 'in situ' it is quite hard to be patient! After all, if it is there, please tweak it as often as necessary! But there will be reasons why they cannot change the settings too frequently. I am still charging the device up in the mornings and it usually takes 30 minutes or so. Sometimes, bizarrely, I cannot get a good connection, but usually it is okay. Consequently the pain has been a bit hard to deal with at times, down my sternoclinomastoid muscle and at the back of my neck, as well as in my right shoulder. Some days it has been right back to square one with a score of 7 or 8 out of 10 on the pain scale. Not for long periods, admittedly, but bad enough. And I need to be very careful about knowing my limits – too often I think I can manage just a bit longer, just a bit further, etc. but the answer too often is that I should have listened to my neck the first time and rested. LIFE WITH A WIG is interesting! I visited House of Fraser a month or so ago and am the proud owner of a fairly short wig. I have never had so many compliments about my hair before!! My own hair is still only an inch or so long. I must say that the staff in the wig department in Birmingham were wonderful. Very professional and helpful. Giving lots of tips for the care of my wig above and beyond the call of duty. Wearing a wig in the heat is not always comfortable, so I tend not to wear it indoors at home, and only my closest family have seen me without it. It does get a bit sweaty, but it washes like a dream. I use wig shampoo and cold water and dry it on a towel overnight, having towelled most of the water off first. I only use a teaspoon of wig shampoo and it works like a dream. Hazards however have included almost setting off out in the car without my wig on, and almost walking out of the house with the rubbish or on some such mundane task without it firmly on my head! But the funniest of all occurred today. I plucked up the courage to go swimming with my daughter, (braved the pool with my inch long, rather severe looking hairstyle and my scar on my chest, that cannot be hidden when wearing a swimsuit). Got as far as dressing and putting the wig on again and went to the mirror to tidy it up. Only the comb caught it and off my head it flew and landed on the floor behind me. All I could do is pick it up and put it on again! I daren't look at the woman next to me! And I have no idea how many people noticed. But you have to laugh at life's little glitches....................................! Also beware the oven! I have singed a few hairs at the front due to forgetting to remove it when using the oven. And the literature states quite clearly that the hot oven will damage the wig! So a few little frizzy bits have been snipped off and I hope no one would notice! However, I am very pleased to have managed a few lengths in the pool and will now keep that up once or twice a week. I am also persevering with the clarinet again and my breath control and embouchure are improving steadily. Another plus is that I have shopped successfully without setting off any alarms as I leave! So, bit of a mixture this month, but I have confidence that the settings will be right in the end and my life next year will be considerably improved. All for now. Bye!	Tuesday 23rd June 2009   14. Hello from your friendly neighbourhood bionic woman!! As I write it is a month since I had the 'internalisation of the neurostimulator'!! It is on the right side of my chest and was started up on 20th May. My head is now at the itchy stage as the scars are thoroughly healing, and it is rather 'bumpy' – the only way I can describe it really!!My hair is now about ¾ inch long on top, though shorter at the sides. So I am still wearing scarves. Quite attractive too, from the website www.lusciouslids.com I also have a wig on the NHS which is fine regarding length and colour, but feels very synthetic and doesn't fit that well. I think I have a small head! Anyway, back to the stimulator. I did decide to go with a rechargeable device, which is much slimmer than the usual battery pack. It does protrude a little, but once my scar is properly healed and fading, I think you will barely notice it. A few nights ago I had a brief, acute pain in my scar, on the inside, which felt like an internal stitch snapping, so it's a bit tender again, so will need to let my team know if that persists. But generally am healing nicely and getting more used to charging myself up each day! Yes Medtronic do recommend charging your device every day, to avoid the risk of complete discharge, which would mean a whole new neurostimulator needed. To recharge, I wear a special holster apparatus, into which slips the fairly large antenna, which makes the connection between the device and the recharger. I keep the recharger plugged into the mains all the time, but if it is unplugged, for whatever reason, for a few hours, it doesn't take long to fully charge again. I should have a pouch in which to carry the recharger around, so that I can get on with activities around the house, but it was not in my pack so I am waiting for one from Medtronic. The whole caboodle has a carrying case, like a small briefcase, to cart it discretely about with you when you're away from home. At the moment it takes half an hour to charge. It all depends on the efficient connection of the antenna and this is measured in solid black bars on the screen. 2 bars and the charge will take ages, 8 bars and I get my half hour charge over and done with! I cannot, at any point, even accidentally, switch off my stimulator, which is good news! Charging can seem a faff at times, but it seems a small price to pay for the expected improvement in 9 months or so! Patience in the meantime. Hopefully Medtronic will make the holster, antenna, etc. a little smaller in due course, too. To be honest, although I am switched on, so to speak, I don't notice any improvement yet, but it will come in due course. Other people have noticed that I can stay still longer (am 'firing' less obviously) when I am sitting having a conversation. I don't know how long charging will take once my amplitude is increased. Could be quite a while! The neurology team at The Walton Centre can change my amplitude, pulse width and frequency!! Weh hey! Some things to guard against to avoid messing up the neurostimulator! Dental drills and ultrasonic probes. So I'm having a clean 'by hand' by the hygienist! Also mammograms – avoid too much squashing ladies! I must also never have an MRI Scan. It is also recommended that the security staff use the hand held 'wand' rather than me going through the scanner. And I have a letter from the hospital explaining this. I also wear an SOS bracelet. There is also lots of advice regarding household things like microwaves and magnets in freezer doors, etc. Basically do not linger near them! It all sounds complicated and obviously it is, but as far as I'm concerned it is fine. The technophiles can get on with that side of things! Tenby Area   We had a weeks holiday down in Pembrokeshire and I managed absolutely fine. My husband was complaining that he needed an older wife that he could keep up with! Here's a picture of the lovely coastline to lift the spirits! Talk soon! Bye bye!
Tuesday 5th May 2009   13.  A belated hello again! Lots going on this last few weeks to explain the delay. First of all, the facet joint injection was completely straight forward. The person who probably suffered the most was the poor nurse trying to hold my head still in order to get clear and accurate pictures for the scan. As the Consultant said “I'm used to moving targets!” I experienced considerable relief of that particular pain within a couple of weeks. So, nicely in time for my admission to The Walton Centre in Liverpool where I've had the first stage of Deep Brain Stimulation as I write. I was admitted on the Monday afternoon and went down to theatre to have my CT and MRI scans done under general anaesthetic. 'Computed Tomography' creates a 3D image and 'Magnetic Resonance Imaging' is useful for showing contrast between soft tissues in the body, so is used in neurology. I had my head shaved whilst asleep and woke up later to find I had 5 screws in my skull, strictly speaking called fiduciary markers, which are used as a point of reference or measure during the surgery to implant the electrodes. That day I got quite a shock seeing myself in the mirror. Three of these markers were across my forehead and one at either side of my head. My husband said I looked like the Vyvyan character in The Young Ones! I text my husband and daughter that day before they visited, as I did look a tad worrying! Then the following day it was down to theatre again to have the electrodes inserted and, would you believe it – home the following day! My consultant said he was happy for me to go, so off I went out of hospital bugs way! I had my 30 clips out at home with the District Nurse. A bit of stinging here and there but my scar is very neat and nicely healed. So, I write twelve days after the initial surgery, waiting for an admission date for the second stage of Deep Brain Stimulation and the BIG SWITCH ON! My scalp is tender and a little swollen, and I can feel the wires under my skin on the right side of my head. I am wary of banging my head – something that dystonia sufferers do pretty frequently! But I feel pretty good and my hair is sprouting already! And I'm experimenting with different scarves and turbans to see which is the most comfortable. I have decided to go with a rechargeable battery system, so will have a detailed training session on how to 'recharge myself'. I'll write again soon and let you know how everything is going..........Bye for now!	Sunday 29th March 2009   12. Oh dear, sorry to be a bit late this month! Have had an incredibly busy time. Still involved with the Expert Patient Programme, which is so good I would recommend it to anyone with a long-term condition, also, getting to know new people and generally learning a lot together is good for the soul! The clarinet is coming along reasonably well and the mouth is beginning to behave a bit better – the 'embouchure' is improving! Also performed, with the ladies choir of which I am a member, a concert of mixed choral and instrumental light music at a local community centre, to very pleasing applause (rapturous at times!). And the daffs, primulas, primroses, hyacinths, etc. are a joy to behold. So what of the neck? Troublesome would sum it up I think. I have experienced a new type of pain over the last month. Very sharp, stinging pain just on the left side of my cervical vertebrae. It is sometimes briefly like a knife twisting and takes my breath away. We have a really good GP who referred me to the local Pain Management Clinic at Burton on Trent. An urgent appointment followed and I am having a 'facet joint injection' tomorrow! Now some may complain about the NHS but not me just at the moment!! Facet joints are pairs of small joints that hold the vertebrae together, give stability and aid movement. Mine have become arthritic, causing bony overgrowth called osteophytes, because of my tilting posture, neck spasms and general wear and tear. Osteophytes are formed by the body to try and limit movement in a damaged joint. Once formed they won't go away. Small amounts of local anaesthetic and steroid are injected to reduce inflammation around the facet joints and provide both short term relief (the local anaesthetic) and long term relief, through the steroid. Or so assorted hospital literature says! I am not looking forward to it at all, especially as I can't keep my head still for a single second and am not particularly relishing the thought of a very long needle near my spine!!! But if it provides relief then it will be worthwhile and, on a serious note, I do trust the doctor. Oh yes, my admission for DBS is now is 20th April, so not long. I will keep you posted on the facet joints situation and try and say 'Hi' before then, but don't hold your breath! Bye!
Friday 20th February 2009 11. Well here we are again! Did you see the article in The Daily Mail in January about the lady who had Deep Brain Stimulation for Dystonia, and appears to be doing well? She seemed to be saying she had some relief of spasm immediately but took a further year to 'untwist'. Interesting. I have been told to be very patient after my neurotransmitter is implanted as it can take months to gain some improvement. I have spoken to my two contacts who had DBS last year and they are doing well. I've spoken to my consultant about whether to a standard Kinetra neurotransmitter or whether to have an Activa rechargeable device. The technology is pretty new and only received the US Food and Drug Administration (FDA) approval last year, I believe. So a little bit of a gamble and that's not like me. But it does not affect the actual surgical procedures at all, so that is the main thing. The Activa is smaller and more discreet so, one day, I might pluck up the courage to go swimming again after my surgery!  I was to be admitted to hospital on 30th March, but it has been postponed until April, so I'm waiting rather impatiently. I'm actually looking forward to getting things done! Once you make a decision it is best to get on with it I think! Although the snow has posed some danger for those who have to travel to work, school, etc. I've enjoyed it! The one advantage of having to retire early is that you don't HAVE to go anywhere in a hurry! Have taken some wonderful photos and enjoyed some good walks. The pain has been very variable, some pretty dreadful pain in the old right sternoclinomastoid area, but also some good days when I've grabbed the opportunity to do something active. What a shame so many schools had to close on 'Health and Safety' grounds? Is it because local authorities are terrified that if little Johnny falls over and hurts himself the parents will sue? Surely life is full of risks that have to be weighed up, and learning to slide around on ice is one of those exciting childhood risks! I could jump on my bandwagon, but I won't! The garden …..............the snowdrops in the garden are valiantly peeping through and looking beautiful. As are the primroses and celandines. I enjoy feeding and watching the garden birds and the RSPB has stressed the need to feed them in these harsh conditions. Fortunately the Japanese Acer was pruned in good time and is thriving. And what of the embouchure and the clarinet??!! Going quite well and enjoyable, but still pretty screechy at times in the higher register! Perseverance required! I play along to a CD which means that it sounds quite good even if I'm not!.......................All for now, more next month. Bye	Friday 16th January 2009 10 My word the month (and year!) comes around so quickly! My husband has just reminded me that it's time to do my blog again. I mentioned some time ago that I was attempting to learn the clarinet. This is a rather laborious process as I'm teaching myself and find it quite difficult, especially now that I'm beginning to play notes in the higher register, which requires a slightly different mouth shape and more puff! I received a clarinet for Christmas, so have an added incentive to practice more frequently (and I can return the loaned clarinet to my friend at last). Harper's Dictionary of Music describes the mouth shape or embouchure needed to play the clarinet as “the positioning and shaping of the mouth, lips and tongue in order to play wind instruments with good tone, true pitch and proper attack.....”........! Well an awful lot of screeching due to incorrect embouchure, improper attack, etc. is issuing forth at the moment! But the middle register is fine and now comes fairly naturally, at least! I have discovered that there are two 'Bowen Technique' practitioners in my area, so may take up the advice and visit one at some stage, but fortunately the arthritic pain is minimal at present. The dystonia pain moves around so much and at the moment is pretty bad in a very localised area down my sterno-clino-mastoid muscle, and the tip of my clavicle is extremely tender. But I know that exercise can help to reduce the pain, and my preoccupation with it, so a walk was on the cards for this afternoon. As I mentioned before, my posture is very poor and I tend to hold on to my head to keep it still, especially when walking – unfortunately this means my right shoulder tends to hunch up all the time and I lean forward slightly. My husband and I did go for a walk. He encouraged/bullied/cajoled me into not holding on to my head, thus dropping my right shoulder into a more normal position and reducing the pain therein. Well, I must have looked comical from behind as I wandered in a seemingly drunken state, not able to walk in a straight line at all, unbalanced at times and with frequent jerks of my head to the left. I had not had a single drop of alcohol and would have passed my breathalyser test!! My husband did realise that holding onto my head enables me to walk in a straight line and keep my balance, as well as avoiding the pain of rather violent jerks of my head, but he is also the one to rescue me with a massage when I'm in agony with shoulder pain! I did try to let go of my head/neck for a fair part of the walk, as we were in local woodland and no one was watching! I did it with a degree of success and know that it would do my shoulder good if I practised this more. The garden is tidy and there are many green shoots appearing here and there. The Japanese Acer tree still needs cutting back but I'm sure my neighbour who runs a gardening business, part time, will help me with it. Must get some grit to protect the hostas from the slugs when they begin to shoot. Slugs hate grit! And.........I have been swimming, so am on track with improving my fitness a little by the Spring. Let's hope I can keep it up. I do need to cut those calories too...........................!No word about Deep Brain Stimulation yet, so patiently waiting for a date for surgery. More next month. Bye.