Sunday, August 22nd 2010

End of the week catch up

Okay, it’s time for a bit of a catch up on the day-to-day stuff which has been rather neglected of late as I poured all my energy since leaving the hospice into migrating the blog to its new home. That project is almost complete now and the next step will be to raise the profile of the blog so that it shows up in search engines. My old blog site did very well in Google search and I’m hoping that the new one will fair just as well now that I have registered it. In the meantime it has been encouraging to see that traffic during the first full week has been quite good. It’s certainly nice to see familiar names find their way to the new site! And thank you for all the lovely comments I’ve received lately. They are always very much appreciated.

Aches and pains

I’m starting to get a lot more pain in my arms and shoulders now. In fact it’s even starting to become a problem in my legs and neck. I suspect it’s a combination of disease progression, i.e. muscle wastage, and lack of mobility. After lying in one position all night my muscles simply stiffen up to the point where it is quite painful to be handled. I get the same problem now sitting in a wheelchair all day. In fact when I think of it there is a clean split straight down the middle regarding how I spend my time i.e. 12 hours in bed (not all asleep) and 12 hours in the wheelchair. Perhaps it’s small wonder then that I’m getting so many muscular problems now. I do of course still have some passive physiotherapy exercises performed on me each day but at times it does feel like we’re fighting a losing battle. In fact because my arms have become so immobile now we are repositioning and giving them gentle exercises every couple of hours. It’s a case of three wiggles, two waggles and no woggles! In fact one of the first things you learn in physiotherapy school is to never woggle a client. Can you imagine the headlines if it ever got out: ‘Man found woggled’! smile_regular

A consequence of sitting in a forward facing wheelchair all day is that you tend to look straight ahead for long periods of time. This has the effect of 1) only seeing people as they appear in your field of view, and 2) getting a stiff neck. I’ve started noticing lately that it is becoming a bit painful at times to turn my head through 90° in either direction. Now I have to try and remember to make a concerted effort to move my head from side to side at frequent intervals to alleviate the problem.

The above problems once again show how a lack of regular movement in any particular muscle group soon leads to problems. Just think for a moment how much an able-bodied person will consciously and subconsciously move the various parts of their body during the course of a day. When I think back to all the cycling and walking, the gardening, the DIY and other physical exercises I used to do. Sigh…

One thing I have started to do recently when I’m hoisted up from the bed each morning is to use my legs to swing backwards and forwards as I push against the mattress. My carers thought I was doing it for the fun of it but I’m actually doing it for the exercise and as a last defiant gesture against an unrelenting disease. So for a few minutes each morning I can create this illusion of moving myself as I sway backwards and forwards. And yes it’s fun too! smile_regular

Care package

We’re in high summer and as usual for this time of year my care package is creaking and groaning a bit as various people in the team take their annual holidays. This time round I have the added problem of requiring double ups several times a day and this places a further burden on the care agency to allocate staff. The one person they did allocate to be a regular helper on the double ups has been off more than on lately and at the moment I seem to have an endless stream of strangers coming through the door every couple of evenings. This is far from ideal particularly as it is always at the times when my care is most personal. And to be honest I’m getting really tired of lying half naked and paralysed on my bed whilst yet another perfect stranger stares down at me!

On a far more positive note it was only through this constant stream of new faces was I introduced to a very charming young Nepalese woman who created a big impact with me from the word go with her quick learning, proactive approach to work. Here was someone who was using her initiative rather than standing around waiting to be told every little thing. In many ways she reminded me of the way Francesca used to work, particularly as both of them came to me with very little experience of working in the care industry. I guess with some people it just comes naturally. And like Francesca she has a very friendly and likeable personality that I found myself instantly warming to. As the marketing folks would like to say, she ticks all the right boxes! I’m now keeping my fingers crossed that she can join my care team on a regular basis fingerscrossed.

And lastly, at least on the subject of care, I would like to say a really big thank you to Debbie who has done so much to keep the care package running as smoothly as possible these past couple of weeks. She has amazingly worked 11 consecutive nights, in addition to all the weekday and weekend hours she has done for me, whilst covering for other staff who are on holiday. What a trooper!

A bit of an emergency!

I had a real fright last Friday morning when Ann greeted me by telling me that water was dripping through the kitchen ceiling adjacent to the strip light and pooling on the floor! I’m normally fairly sleepy first thing in the morning but with news like this I immediately pricked up my ears as the one real fear I have is being trapped and paralysed in a burning building. And as we all know water and electricity do not mix!

A quick peek in the airing cupboard directly above the kitchen revealed a wet carpet. This was traced back to a weeping valve controlled by one of the electric zone actuators. Whatever happened must have occurred during the night whilst I was sleeping. I shudder to think what could have happened if the water had found its way into the zone actuator or the strip light.

We tried contacting my local plumber but couldn’t get a response. In the end the solution was much closer to hand. The builders working just outside in the garden were able to contact a plumber they use and who subsequently turned up at the door within the hour, identified what needed to be done, went away to get some parts, drained the system down, replaced the parts, refilled the system and had everything working again by lunchtime. Although it was only one of the valves which had failed I decided to have them both replaced as they were both the same age. I figured it was only a matter of time before the other one went anyway.

* * *

And finally just before I sign off I would like to say thank you to my friends Bill and Kim from Eli Lilly who have both sent me some very nice e-mail letters lately. They were very much appreciated.


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Wednesday, May 12th 2010

More training for the girls

Time for some more physiotherapy training! Recent sessions have concentrated on passive movements of the upper limbs but we have now reached a point where we need to start looking at lower limb passive movements. Lying in one position on the bed for 10 hours each night hardly able to move means that by morning when my carer arrives to get me up my legs have become very stiff. So I contacted Margaret, my Community Physiotherapist, to ask her if she could drop by and demonstrate some techniques that my carers could use in the morning to help loosen up my stiff legs before attempting to stand up and walk to the bathroom. The amount of time that I can weight bear is already down to just a few minutes so to minimise the chances of me falling I need to ensure that my legs are working properly.

So at lunchtime today my carers started to turn up at the door followed shortly afterwards by Margaret who had brought a surprise guest who I’ve not seen in a while; Chris, my OT from the PCT. She’d joined Margaret to take a look at the problems I was facing in my attempts to stand up. Because they didn’t want to tire me out I was left to wait in my study whilst my care team and Margaret adjourned to my bedroom where Margaret, using a member of my team lying on the bed, demonstrated the passive leg movements. Back in the study and Margaret used me to demonstrate the passive arm movements for the benefit of those who had not received training before.

Margaret and Chris also took us through the techniques of using a lifting belt. This is basically something that is worn around the waist and is fitted with a series of handholds going all the way around. The idea is that it makes it easier and safer for a carer to assist in helping someone to stand up. I must admit that over the last week or so in particular my strength has weakened to the point where I am finding it increasingly difficult, even with assistance, to launch myself into an upright and standing position. If I can’t generate enough momentum by rocking backwards and forwards prior to launching myself off the seat then I am just as likely to fall back on the chair. The lifting belt allows for a wider choice of positions to hold me, and indeed to guide me downwards should I fail to stand up. Ann and I gave it a try whilst Margaret was on hand to supervise. We actually failed on the first attempt, probably because I was feeling quite weak today but we managed it on our second attempt. I’m not sure how effective this would be if my legs were to buckle at the knees but at least handling someone from the waist puts less stress on them than say being lifted from the arm joints. Well, at least now we have another piece of kit that just may prolong my ability to stand a little while longer although the number of recent attempts to stand (and fail) is steadily increasing so I fear this last shred of independence is on borrowed time…

… Spoke to soon! Late this afternoon I took a fall onto the carpet in my study when I tried to stand up with the help of my carer. Unfortunately my legs completely buckled and I fell down onto my knees trapping my legs beneath me which hurt more than the actual fall. Fortunately my carer was skilled and experienced enough to be able to get me upright again although I was rather shaken by the experience. Nevertheless once I was standing up I gingerly walked to the bathroom but I breathed a big sigh of relief when I made it back to my study chair and was able to sit down again. This standing and walking business is getting really scary. The fall was reported to my agency and a request was made to have a second carer assist me to bed this evening but in the end we made do with just the one because the second one was running terribly late and I was tired and wanted to go to bed. On this occasion I managed to conquer my fear of falling and made the attempt to stand up with just one carer. Sometimes I find that the only way to conquer a fear is to face it head on. And this is what I did on a couple of occasions tonight. Having said that I’m also acutely aware of how painful head injuries are having already suffered two. Anyway, I made it through another day and I was so grateful to be able to lie in bed and not have to combat gravity. But for a while I lay there wondering how long would it really be before I needed double-ups at key times of the day?

Today was also a fine opportunity to (at last) get some pictures of two of the healthcare professionals who have been supporting me since shortly after my diagnosis. This is something you may remember me mentioning a little while ago when I marked the occasion of my blog’s second anniversary, and how I regretted not having more pictures of all the kind people who were looking after me. Today I was able to redress that shortcoming a little. I had also intended to get some pictures of the girls themselves but unfortunately time was against us on this occasion and they all had places to be. But stay tuned because the girls are planning another jailbreak soon so hopefully we’ll get some pictures then. In the meantime here’s a couple of pictures of Margaret and Chris, one under natural light and one with flash. Thanks this time go to Alli for the camerawork.

With Margaret (in white) and Chris

With Margaret (in white) and Chris


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Late Autumn (November) – part 2

Calendar entries highlighted in yellow

11th of November – Stinging eyes / Back relief

One of the strange things I’ve noticed since having MND is that my eyes sting really badly when they water. I started noticing it sometime last year but at the time it was rather infrequent. Now however it seems to be a recurring problem and there is more than an even chance that my eyes will start to water at least once during the night, either before I go to sleep or like today when I wake up in the morning. Once my eyes start to well up with tears the pain can be quite excruciating, like getting shampoo in your eyes, and I’m forced to hold my eyes tightly closed for about 10 minutes. If it happens when I’m in bed then I’m powerless to do anything about it because I cannot raise my arms up to wipe away the excess water so all I can do is lie there with my eyes tightly shut waiting for the stinging to go away. If it happens when I’m standing up then I have to find a way of quickly sitting down because my balance is unpredictable when I close my eyes. Curious, and wondering if it was a separate issue to MND, or whether other people in my situation had experienced something similar, I searched for and found a post on this very subject on the Build UK website (this is a forum set up by King’s College in London specifically for people who have or are caring for people with MND). I was surprised to see a number of people there who were experiencing the same problem. The most recent explanation suggests that that is due to dry eyes and the body trying to compensate. There was also mention of something being prescribed called artificial tears which apparently is available at any chemist. I’ll mention this to my GP when I see her next week.

* * *

I’ve been having a lot of discomfort in my upper back recently with the shoulder blades feeling like they are digging into my back whenever I lay back in a chair. So I sent an e-mail to my OT asking her if she could supply any kind of pressure relief cushion. She turned up this morning with Lauren, an OT student doing placement work in the first year of her three-year university course. They had brought with them an inflatable cushion seat which apparently could also be used as a back support. They inflated it with what looked like an overgrown balloon pump and placed it between my back and the office chair. It wasn’t a great success though and lacked any kind of stability. In fact it felt like resting up against a vertical waterbed. Being made of some kind of plastic it was also disconcerting to hear it constantly crinkle. We were more successful later in the morning when Marion returned with some kind of foam sponge cushion which offered better stability, comfort and a certain amount of ‘give’ which allowed my shoulder blades to sink in. I shall be trialling it over the coming week to see if it is of benefit.

12th of November – Physiotherapy training

Margaret, the community physiotherapist called round this lunchtime to deliver some training for Ali and Vanessa, two carers who have started to support me on a regular basis. For months now we’ve had to struggle on with just Ann and Francesca qualified to perform the passive movements. But with holidays, sickness and a reduction in hours it has meant that my physiotherapy exercises have suffered and are just not being done as regularly as they should be. Because of this neglect my arms have got stiffer and I have lost some range of movement. Concerned that if left unchecked I would start to find it painful to get dressed I contacted Margaret and set up the meeting myself, liaising with the care agency to make sure that the right people were notified. Well if you want anything done, do it yourself!

15th of November – Struggling a bit

I’ve not had a particularly good week. Apart from the previously mentioned aches and pains in my back, and the problem with my stinging eyes, I’ve also had to contend with weakening neck muscles which is making it difficult at times to support my head without resting on a high backed chair which unfortunately I don’t have in my study but will have to do something about real soon. On top of all this my hands have been playing me up quite badly this week to the point where I am now really struggling to tear off and hold sheets of toilet tissue! My hands tremble too much to get a decent grip on anything. I’ve also been finding it virtually impossible to type a complete sentence using the keyboard of my computer. All that pivoting motion of the arm support is tiring me out. I am now really dependent on the voice recognition software and for this reason have devoted quite a lot of my time this week in trying to master it. I’m certainly getting better, no doubt about that, but it’s still painfully slow compared to normal typing. Still, I shudder to think what I would be doing now if I didn’t have it!

18th of November – Red tape

A couple of days ago I had a home visit from my GP. One of the things we discussed was the problem I’m having with my stinging eyes. I told her that I’d already mentioned it to the district nurse and that she’d mentioned something called artificial tears. We agreed to give them a trial so my doctor wrote out a prescription for Viscotears and made arrangements to have them delivered to my home. They arrived yesterday and in the evening Ali applied the eyedrops just before I went to bed. Today I got a surprise when I switched on my computer to find an e-mail from the care agency to say that they had contacted the district nurse who would then be in touch with me to arrange a suitable time for the eyedrops to be applied. Sure enough this afternoon I got a call from a district nurse but when I explained that I would need 2 to 3 applications a day I was told that they did not have the resources to do this and could only come out during normal working hours. This of course did not surprise me so I contacted the care agency and told them unless they had any serious objections I planned to continue asking my carers to apply the eyedrops. Ann and Ali have 40 years care experience between them so I felt completely safe with them applying the eyedrops. The care agency responded by telling me that their company procedures and insurance prevented them from administering anything which required measuring or pouring. So at the moment I have something which may alleviate the stinging in my eyes but cannot use it because my carers are not allowed. This is another one of those examples of rules and regulations, policies and procedures and legislation that have got a stranglehold on this country. I could get my brother or my next-door neighbour to apply the eyedrops but I cannot get the care agency whose job it is to provide professional care to do it.

19th of November – Green light

I had an e-mail today from the care agency to say that they had consulted with their RGN (Registered General Nurse) adviser who has agreed to sign off on my carers so that they can administer my eyedrops. Thank goodness commonsense prevailed. So for the time being I shall be having one application in the morning after breakfast and one application shortly before going to bed. We’ll see how we get on with this.

21st of November – Shopping for a chair

Francesca took me shopping this morning. It was my first time out of the house in almost a month and I was starting to climb the walls desperate for a change of scenery! I was on a mission – to find a decent chair for my study. So it was off to Staples, our local office supplies superstore, and about the only place in town that I could think of who would sell office chairs. I had a good idea of the sort of thing that I was looking for i.e. something with a high back that would fully support my neck – fast becoming essential, good lumbar support, a high degree of comfort for prolonged usage, full-length armrests that would act as barriers to prevent me falling off the side if my balance and torso strength weaken further, and height adjustable to make it as easy as possible for standing up. Unfortunately Staples in-store selection of chairs was somewhat lacking. There were only a few high backed chairs, most of which failed to support my neck properly, whilst the remainder could not be adjusted high enough. So I left the store empty-handed and frustrated. The Staples website offers a far greater selection but I do feel that with something as important as a chair that I will be sitting in all day that I really do need to try it out first. Back to square one! I’ll need to give this some further thought.

22nd of November – Uncomfortable

I’m starting to feel trapped. The muscle wasting going on throughout my body is making so many everyday tasks difficult that I am constantly feeling tired and uncomfortable. I’m finding it really difficult to find somewhere to relax during the day. For most of the day I sit in my swivel chair in the study doing one thing or another on the computer. But there are times when all want to do is lie back, close my eyes and relax for 30 minutes or so. Unfortunately my options are limited. The office chair as already mentioned doesn’t support my neck so is not really a viable all-day solution. I could lie down on the bed but I’m a bit reluctant to do so because it is getting very difficult for me to get off of it on my own. And if I sit on the sofa and lie back I no longer have the upper body strength to pull myself forward so I become trapped. It’s all a consequence of living alone. If I had somebody here all the time then I wouldn’t worry about lying on the bed or on the sofa and getting trapped because there would be somebody here to help me. Today has been one of those days; I’ve had a bad headache, a pain behind my eyes, backache, neck ache and a general feeling of weakness. All I’ve wanted to do is lie back and relax but I’ve not been able to so I end up becoming frustrated and counting the hours until a carer arrives. Tonight I am really looking forward to my bed and the bliss of oblivion. At least in bed I can close my eyes in a darkened room and not have to fight gravity (even though it does mean staying in practically the same position all night). And so far, fingers crossed, the MND has not chased me into my sleep. Goodnight!

23rd of November – Cold / Appointment with the Neurologist / Bad news

The duvet slid halfway down the bed again in the early hours of the morning leaving me shivering until my carer arrived at 9 am. My legs are getting so weak now that their ‘lifting ability’ is not up to the job of supporting the weight of the duvet and carrying it forward. If I try to do it I get a pain running through my leg. Ali, one of my carers suggested we try anchoring the duvet to the mattress using some elasticated straps which she ordered for me and which we’ve been trialling for the last couple of days. But so far we’ve not had a great deal of success with them although we’ll continue to experiment with different anchoring points.

* * *

I had my four-monthly appointment with the neurologist this morning. And what a morning it was too, with torrential downpours and high winds. Certainly not the sort of weather you’d want to go out in, especially in a wheelchair or with precarious balance. My aunt and uncle had very kindly stepped in at short notice to take me up to the hospital now that Kim has left. Getting in and out of the car continues to be a bit of a problem. The worst part for me is lifting one leg into the car, while supporting my entire weight on the other and trying to maintain my balance as I gradually lower myself into the car – all without using my arms.

The appointment itself yielded nothing new or interesting other than the fact that it was the first time I had gone to see him in my wheelchair. It was mainly a review of events over the past few months. I was asked if I had any discomfort and I told him about how uncomfortable it was becoming whenever I rested my back against a firm surface no thanks to all the wasting going on around my back. We talked a little about breathing and I asked him why I had not had a lung function test ahead of this appointment like I normally do. Apparently it’s because I had one down in Southampton back in September and as the results have been fairly stable lately and I have had no reason to contact the folks at the Respiratory Centre, it was felt that a test at this time was not necessary. I could have one scheduled if I wanted or simply wait until the next appointment or until the situation changes. I decided that this is the best course of action as I believe it is more important how you feel rather than what the numbers say. The neurologist seems to agree with my opinion. He’s scheduled another appointment for March next year but has told me that he realises that it is getting increasingly difficult for me to get to the hospital and that I may feel that they are only worth continuing if I get something out of them. He’s got a point I suppose as I certainly felt that I had come away from this meeting with nothing useful. But for now I shall continue on as long as I am able.

* * *

I’ve received an e-mail at last from In Touch, the people managing my home improvements. Unfortunately it’s not good news. I’m being told that my planning application for a single-storey side extension to the house is going to be refused! Frustratingly they have not told me why so the first thing I’ve done is to write back asking for clarification and whether we can appeal and how long it would take. Failing that we’ll have to submit a fresh planning application for a rear extension. I went to bed this evening feeling very low.

24th of November – A flurry of e-mails

It was a bit like being back at work today as I seemed to spend half my time writing and responding to e-mails between In Touch and my OT in response to yesterday’s bad news. It started with a response from In Touch who said the reason the planning department are refusing my application is because my house is on the corner and the extension would not be in keeping with the rest of the estate. If they allowed it then it would set a precedent for all the corner houses. I replied by pointing out that the large house on the corner opposite was up against a public footpath, and that my proposed extension was only a single-storey that didn’t block anyone’s view or cast a shadow over anyone’s property. Also it would be running in line with the back garden brick wall already in place that was up against a public footpath. I also pointed out that there had not been a single objection raised from all the people living nearby who had been notified. Sue, my contact at In Touch was sympathetic and has offered to speak to the planning official dealing with my case raising the points in my e-mail. If this fails then I have two choices: 1) I can choose to appeal but it will have to wait until the end of next week and then it may take up to 6 months for a decision; 2) submit a fresh application, this time for an extension on the rear of the house. If we take the second route we are hoping to take advantage of a letter from my palliative care doctor in the hope that it might add some weight and sense of urgency to the application. We can only try! Clearly I cannot afford to wait six months for a decision which could still be unfavourable. If I didn’t have a progressive disability and more energy to fight it then I would but unfortunately time is not on my side. At the moment I’m awaiting the outcome of Sue’s discussion with the planning official. Fingers crossed!

26th of November – Start again?

I received an e-mail from Sue this morning who tells me that the issue that the planners have is keeping the open spaces on the estate. They have however said that we can appeal and that the time is down to about eight weeks. I’ve instructed In Touch to do this whilst at the same time submit a fresh planning application for an extension to be built on the rear of the house. This would not be the ideal situation though as it would darken the dining area, destroy the back garden, and will end up having to be built over a drain (assuming we got permission). So it’s now going to be a bit of a race against time. Which will come through first; the appeal or the second planning application? Unfortunately we cannot appeal until next week when it is formally refused. Again I’ve asked In Touch if we can use a letter from my palliative care doctor to help expedite things. Anyway whatever happens I’ll have lost about two months so my hopes of having the extension ready by early spring will have to be revised. Meanwhile my condition worsens…

29th of November – Uncomfortable again / Clear out

I’ve not had a particularly good weekend. I woke up a few hours too early this morning with an aching lower back. No matter how I tried to wriggle in bed I just couldn’t get comfortable or get back to sleep, in fact doing so only made it hurt even more. Because of all the wasting going on up and down my back I’m becoming ever more sensitive to hard or uneven surfaces. I’ve also had to start asking my carers to tear off strips of toilet tissue and leave them hanging on the towel rails as it is getting dangerous for me to bend down and try to do it myself without the fear of toppling over. Also my hands are getting so bad that I am struggling to even hold paper and my strength is so poor that I’m embarrassed to say I struggle even to tear sheets off along the perforation. My neck has also been acting up quite badly these past few days and is becoming increasingly difficult, particularly towards the end of the day, to keep my head in an upright position. At times when my head falls forward I have a devil of a job bringing it back up and level again and trying to throw my head back upsets my balance. Tonight was the last straw; I got stuck on the toilet and couldn’t raise my head up which affected my balance so badly that I was unable to stand up. I had to call for help from Ali. Not my most dignified moment! As much as I hate the idea I’m going to have to take a fresh look at neck supports – and soon!

* * *

We have one of those regular collections for charity this coming Tuesday morning; you know the kind, where they leave a plastic bag hanging out of your letterbox. This time it’s the turn of the British Heart Foundation, a worthy cause indeed and one that is close to my own heart (no pun intended) as I have lost family to heart disease. So I’ve taken the opportunity, with Ali’s help, to sort through one of my cabinets full of books I’ve read but clung onto. I’m a bit of a terror when it comes to books. I read them with great care so that even when I have finished with them they still look pristine. And because they look so good I am loathe to dispose of them so I end up amassing shelves full of paperbacks that I know I will never read again but in a strange way still give me comfort knowing that they are there. But now it really is time to start clearing the decks of things that I have no further use of. Although I know deep down that it makes perfect sense to do so the exercise was tinged with sadness as it felt like I was dismantling part of my life. I have had a lifelong love of books so saying goodbye to novels that gave me a great deal of enjoyment at the time just didn’t feel right. Sadly I couldn’t even hold my books let alone turn the pages!

30th of November – Neck support

The first thing I did this morning once I was up was to make a phone call to Chris, my OT with the NHS, to explain the situation with my weakening neck muscles. Fortunately I was able to arrange a home visit at short notice. So this afternoon Chris showed up with a selection of neck supports for me to try. One was my old friend from months earlier that made me resemble a Michelin man! Apart from the fear of endorsing tyres and not getting paid for it I decided to give it another go. It’s basically a series of three fabric tubes filled with some kind of beads. It’s quite bulky and because it completely surrounds the neck felt very warm even after a few minutes which would be no bad thing outside on a winters day, but could be too hot indoors. More importantly though was the fact that I felt it didn’t offer enough support. The weight of my head could end up compressing the beads instead of holding it in position. The next option we looked at, and the one I’m currently trialling as I write this blog entry, is what is called a headmaster’s collar. It’s a fabric covered tubular affair that rests on the collarbone and supports the lower jaw. It offers far more support of the head in an up-and-down motion but is ineffective in stopping the head falling to the side. Anyway I’m going to try it over the coming week and see how I get on.


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