An eventful month

Calendar entries highlighted in yellow

I’m experimenting a little here with the format of my blog. As I originally stated way back at the start it is not my intention to write a day by day account of living with MND. Partly because I don’t want to feel a slave to the blog (there are other things I enjoy doing as well you know), but also because I feel that not enough happens on a daily basis to warrant inclusion. I don’t live that interesting a life I’m afraid – and more so as my disabilities increase. I tend to pick topics and then write a full blown article around them whilst all the miscellaneous events are swept together in a 100 day summary. Sometimes though this is too long to wait (especially this year I suspect as my needs increase) and as the blog is now called ‘Living with Motor Neurone Disease’ I thought I would try and place a bit more emphasis on the daily ‘living’ and not just obsess over all the health stuff. It will also give me the chance to write about important appointments a bit sooner even if they’re not worthy of a whole article by themselves. And just to clarify, the specialist articles and major events will still continue in the current format. So to start the ball rolling I thought I’d cover the appointments and day to day stuff that’s been happening this month which as it turned out has been quite eventful! I do apologise for the length of this post and in future if I were to cover a month in such detail again I would endeavour to split it into several smaller posts. Anyway see what you think and if you have any thoughts one way or the other then please leave me a comment at the bottom of the article.

1st April – MNDA AGM

Went along to this year’s AGM for the MND Association’s North East Hants branch. And what a difference a year makes with this disease. Last year I managed to struggle into a jacket and make my way alone and by bus followed by a spot of walking to the meeting. This time I was reliant on the help of Alison, my friend and carer who accompanied me in her car. I much prefer to travel by car nowadays anyway as buses have a tendency to pull away even before you’ve found a seat which is not too safe now that I’m slower in reacting to sudden changes in balance. Unfortunately due to a mix up with the time we arrived rather late so I missed some of the guest lecturer’s presentation which was on care. What I did see though didn’t capture my interest to the same degree as last year’s talk which was on MND research and it would seem that my thoughts were mirrored in the disappointingly low turnout this time. Last year I was on a fact finding mission to understand as much about the disease as I could so a talk on research came at the right time, but this year with my declining health I felt that a talk on care might be beneficial. Perhaps I just missed the best parts.

Saw my friend, Linda, whilst at the AGM. She was the first Association Visitor who made contact with me shortly after my diagnosis. Last autumn she very kindly modified some long sleeve shirts for me replacing buttons with velcro fastenings. I’ve asked her if she can do the same for some short sleeved shirts as the weather is getting warmer and I’m starting to melt!

I’ve made a start on relinquishing my personal care and allowed Ann to give me a wet shave. I’d been stubbornly clinging onto this far longer then I should have despite the fact that it was taking about three times as long and was burning up precious energy. Oh well, look on the bright side, it’s one less thing to struggle on with.

2nd April – A discussion with my Palliative Care Doctor

I had a meeting at home this morning with Lara (my Palliative Care doctor from St Michael’s Hospice) and Rachel (my Social Care manager) to discuss the recent decline in my respiratory system, the proposals that I discussed with my Neurologist, and their implications. I explained that I feel like I am approaching a crossroads and that there are decisions I will need to make soon that will determine to some degree how my future will play out. I also said that I was unable to make those decisions until I had gathered all the facts and understood their implications. The big concern at the moment is breathing. I have gone from being able to push 4 litres of air to 3 litres since November – a dramatic 25% reduction. Clearly I cannot go on losing a litre every 4 months so we talked a little about my concerns around this and the options that will be available. We then moved on to a discussion about tube feeding which is also something I’ve been asked to give some thought to, not because I am having trouble eating, but because there is apparently a window of time in which to safely perform the procedure and that is linked to my respiratory performance. I feel like I am being hit with problems relating to two of life’s critical functions simultaneously – the ability to breath and the ability to eat. It’s a lot to think about. We touched on the longer term disease progression and I expressed my concerns about balancing quality of life with duration of life. The MNDA have recently made available a new copy of an Advanced Directive (also known as a Living Will) template which I downloaded a little while ago but have not yet studied in detail. We’re going to have a separate meeting at some point to discuss this in detail so that I can lay out my wishes and effectively draw a line in the sand on what treatments I will accept and those I won’t. But I will need to understand the ramifications of each choice first.

Rachel had come along to find out how my care package was going and to find out how my needs were changing and whether I would require either an additional midday call or extra time during the morning or evening calls. At the moment I’ve decided to keep it at two calls a day as I can just about manage with the food and drink that has already been prepared. Breakfast and dinner are taking longer now as my muscles tire and the paralysis worsens so it may not be that long before we need to extend the time slightly – or give up eating independently.

3rd April – The District Nurse comes a calling

Had a visit from Anita this morning. All these women that keep turning up at my door, I wonder what the neighbours think? hehe. I’d just got used to Donna who was a really friendly woman and would often make me a cup of tea, and sometimes a bite to eat. Unfortunately she’s been assigned to another area. Since then I’ve had a number of different faces to deal with and it’s hard to keep a track of them all. It seems to be settling down a bit again and for the last couple of months I’ve been visited by Anita, a very pleasant young girl. These visits don’t yield much for me at the moment although they always ask if I need anything. It’s just that I already have quite a few people supporting me so really the meetings just seem to be an opportunity to chat and for me to update the nurses with recent events and any changes in my symptoms.

I’ve joined a forum on MND! Build-UK was set up by Kings College in London as a place where people in the UK affected by MND (living with, caring for etc) can come together and share experiences, pass on useful tips and offer support or just have a friendly chat. I’ve been dropping in from time to time since last year as a non-member (lurking I believe they call it) but never bothered to register, instead preferring to pour my energy into my own blog. But the blog has always been about one-way communication whereas a forum is two-way and it is that interaction that I would like to participate in at times. Perhaps I’ll even be able to pass on some of my own experiences that may help others. To start the ball rolling I wrote a bit about myself as an introduction and to say hi to the other members.

6th April – Mobile Arm Support assessment

Heather & Tori called to see me this morning. They’d driven down from the Oxford Centre for Enablement to give me an assessment for a mobile arm support (MAS). Actually this is the second one I’ve had. It was almost a year ago that these folks last called to perform the assessment and at that time they concluded that it was a bit premature as I was still able to lift my right arm and had far more strength in it then I do now. They felt that my natural movements would fight against it and I must admit that it did feel strange and went against the way I would normally eat. But fast forward a year and here we are with both arms virtually useless. I can rest them on a flat table and that’s where they’ll stay until I was to get up and drag them with me. I’ve been struggling at mealtimes for a while now and it’s been steadily getting worse which is why I’ve asked for another assessment.

Tori had brought along with her one of these fabricated arm supports constructed from metal rods and fitted with a polished metal forearm support (not unlike my Ergo Rests) which my arm was lowered into. The whole thing works on a counterbalance system which Tori had to fine tune to suit my weakened arm. Initially we tried fixing it to the edge of the dining table using a clamp arrangement but the positioning required me to exert myself too much so Tori resorted to plan B which was to mount it to the upright strut of a special wheeled chair that they had brought with them – and I got to keep. With my arm supported the counterbalance system effectively amplifies what little movement I have into larger movements. I still found it difficult to use as I have real trouble pivoting my arm away from my body. Like one of those children’s robotic toys or perhaps one of James Bond’s arch villains the arm can take different attachments. I tried one that had a pivoting spoon which was designed to keep level at all times to avoid spillages and I even got to practice picking up some chopped apple with it. I have to say I’m not totally convinced about this. If all my food is going to have to be chopped up even smaller then at present to fit on a spoon then it is going to take a lot of swinging movements to eat a meal which could really tire my arm out. Although you can use it to hold a fork (in your hand) I had trouble doing so because of my weakened wrist. I guess I’m just going to have to try it for a while and see how it goes. Tori took some measurements so she can customise one for me and will be back in a few weeks. But even if it does work out I suspect it will only be a short term solution because my arms and shoulders are still paralysing. One day I simply won’t have the energy or range of movement to use it.

A secondary function of the arm support and one that really caught my interest was revealed when Tori added a second attachment, basically a dimpled rubber thimble on an extension rod. With this configuration the arm support became a page turner! Using the height & angle adjustable table that my OT had brought round I was able to flip through the pages of a book or magazine far easier then I can normally.

I’ve started my first topic on the Build-UK forum by posting an account of my experiences with the mobile arm support assessment today and asking the other members with upper limb disability how they manage at mealtimes.

7th April – A day with my Aunt & Uncle

I hitched a ride into town with my Aunt & Uncle this morning straight after my carer had been so that I could buy some birthday greetings cards. I may have given up driving but I still hold a Blue Badge and at times it comes in very handy as it enables us to park in extra wide bays so I can get out of the car easier. I hardly ever go into town nowadays but when I do I take someone with me because I cannot reach for anything or indeed pick it up. Luckily my Uncle was on hand this time to handle the cards and allow me to read the messages inside before making a selection and then taking care of the payment process for me. With the shopping out of the way I went back to their place for lunch and a nice relaxing chat. It was good to spend a day away from the house for a change.

8th April – A visit from my OT

Chris, my NHS PCT OT (phew, what a mouthful!) called this afternoon for our monthly chat. I guess I’m quite lucky really as I have two Occupational Therapists – one looking at the way I perform tasks (National Health Service Primary Care Trust) and one looking at my environmental needs (Adult Services). Today it was a chance to talk about activities that I’m finding difficult to perform and to give an update on my declining health. One thing that I do sometimes feel frustrated about is explaining the same things to every health care professional that calls. I just wish they would share more data. Still I mustn’t complain. It’s better to have too many people caring for me then not enough. We talked about how MND chips away at your confidence to do things on your own such as going out walking which is becoming a bit of a concern lately. So before going home she very kindly accompanied me on my late afternoon walk. How kind.

9th April – A long overdue visit from the Physiotherapist

It’s been more than a year since I last saw Margaret, the Community Physiotherapist. In all that time I’ve been following the exercise tips she had shown me but have now got to a point where I’m finding it difficult to perform the arm movements on my own because of the worsening paralysis. I don’t want to end up in a situation where the muscle tissue stiffens to a point where it makes dressing difficult or increases the risk of cramp. I want to keep the muscles as supple as I can even though I am loosing the ability to control them, so that was the purpose of this visit. After checking my range of movement she concluded that it was still very good but to keep it that way I shall be handing over the exercises to my carers. Margaret has agreed to call back and provide instruction.

10th – 13th April – Easter

My lovely carers all came bearing gifts this Easter! Francesca has given me a nice Cadburys egg (which will make up for all the Quality Street she raids from my coffee table, hehe), Ann has given me a Lindt gold bunny which is on guard duty by my laptop computer, and Alison baked a cake; a delicious sponge with chocolate cream filling and topping. If that little lot doesn’t help put the pounds back on then I don’t know what will. Thank you girls, you do spoil me.

16th April – A discussion about PEG feeding

Alison has very kindly accompanied me this morning to the Basingstoke & North Hants hospital for an appointment in the new DTC (Diagnosis & Treatment Centre) to see Eddie, a specialist nurse in tube feeding. The purpose or at least so I thought was to answer any questions I might have and to gain an understanding of what it entails so that when the time arrived I would be able to make a decision. I was therefore a bit surprised when he told me that he had already received a referral from my Neurologist. I was under the impression that it would only be something I would need to consider depending on the outcome of my respiratory tests next week, but I’ve been told today that my breathing ability has already declined to a level where the decision needs to be made soon. Apparently there is a safe window of time where the procedure carries minimal risks and that ‘window’ is dictated by respiratory performance which needs to be reasonably strong to take the anaesthetic. My FVC (Forced Vital Capacity) took quite a drop in my latest lung function test, hence why I’m being asked to consider it now.

So for the next hour or so Eddie went through the whole process of what a PEG (Percutaneous Endoscopic Gastrostomy) tube is (where do they dream these names up?) by showing me an example and talking me through the procedure required to fit one and the care that would be required to maintain it. For those not aware of what a PEG feeding tube is, it is basically a way of bypassing the throat and supplying food (in a liquid formula) directly to the stomach. It’s not something used exclusively on people with MND and people of all ages including babies can have one fitted. The procedure is therefore well understood and the associated risks are minimal (provided it is done at the right time).

It’s very frustrating though; my ability to eat normally (excluding problems with my arms) remains unchanged so a large part of me is resisting the whole idea of having one fitted, after all I’m not likely to be using it any time soon (famous last words?) as I don’t have any bulbar symptoms. I also don’t like the idea of having an invasive procedure which does nothing to alter the disease progression, and having a plastic tube dangling from the outside of my stomach is a constant physical reminder that I have (already) reached an important milestone…and that I am losing. But the voice of reason is telling me that I should look upon having one as an insurance policy. There may come a time when eating food orally becomes stressful through the fear of choking. A PEG would remove that risk and ensure that I get sufficient nutrition as well as serving as another means of delivering medication. It would also minimise the chances of a lung infection so there is a strong argument for having one.

Having a PEG is a patient choice and not everyone chooses to have one but in reading up on the pros and cons it would seem that statistically people with a PEG live longer. Whether that’s a good thing or not I guess depends on the individual and at what stage of the disease they are at. Because I don’t feel like I’m knocking on Heaven’s door just yet I’m inclined to opt for anything that can maintain a good quality of life so am only too aware that if I say no I may indeed be burning my bridges and if I reversed my decision later on may be refused the procedure on safety grounds. However, on the other side of the argument I have read of people who experience repetitive infections around the wound site. Decisions, decisions…

17th April – Monthly chat with my GP

Val (from Basingstoke NeighbourCare) called round mid afternoon to take me to see my GP. Normally she turns up with her husband, Jim, but he was otherwise engaged today so Val was accompanied by Ann, another volunteer driver with BNC. I’ve been using Jim & Val since about last autumn and I’ve got to know this jovial retired couple quite well. They’re very reliable & friendly and take a keen interest in me. I normally have an appointment with my doctor about once a month but in this instance it has only been two and a half weeks since I last saw her so this is more like an interim visit. And the reason? It was because she is concerned about me in light of the findings from my recent lung function test that were discussed with the Neurologist last month. She wanted to know how the various appointments I’d had scheduled in response were progressing. I talked about the visit I’d had from St Michaels Hospice and what I’d learnt from yesterday’s meeting with the PEG specialist. I also told her that I now had a date and time for my visit to the Respiratory Centre down in Southampton. Apart from that it was the usual run of the mill stuff with me describing any new difficulties I was experiencing, oh yes and collecting my monthly prescription for Riluzole. Trouble is there’s not a great deal they can do. Sure they can manage symptoms like cramp, monitor the effects of any drugs and keep an eye on the breathing but ultimately none of it will make a blind bit of difference to the disease progression. It must be terribly frustrating for them to want to help their patients and yet feel so helpless.

I’ve been having some problems lately with my left hand. It’s becoming difficult to clench & unclench it and to wiggle the fingers. It’s a bit intermittent at the moment and the severity is determined by how much I’ve been using the hand and by environmental temperature. It’s making it even more difficult to interact with objects.

20th April – Personal Care increases

I relinquished another aspect of my personal care this morning and had Alison wash my hair. With my arms the way they are now this was getting too much for me even when resting my elbows on my knees and bringing my head down. At least now I can save a bit more of my precious energy and know that it will be done more thoroughly – and enjoyably!

Had a phone call from Southampton Hospital whilst Alison was doing my care to say that they would be sending me an Oximeter by recorded delivery and that I would need to wear it to sleep the night before my hospital appointment so that it can perform an overnight oximetry test.

My garden is turning into a meadow! The lawn is sprinkled with a multitude of bright yellow dandelions and the flower borders are becoming overrun with weeds. I used to keep it neat and tidy but gave up all attempts last summer. Now I couldn’t even raise the garage door let alone get the lawn mower out! Perhaps I should import some exotic butterflies and charge an admission fee with all proceeds to the MNDA 🙂

21st April – I have a Mobile Arm Support!

Woke up with a headache and a feeling of nausea that stayed with me throughout the day. Took some Anadin but it didn’t make me feel any better. All this on top of a general feeling of weakness prevented me from doing much today and I seemed to spend half the time making friends with the sofa just sitting there half asleep and lacking any real get up and go. In fact I think it packed its bags and left a long time ago!

Tori has returned bringing with her a kit a parts that assembled into a mobile arm support. We spent a bit of time tweaking the counterbalance system again until it required minimal effort on my part to move it. It’s still frustrating though that it is only supplied with a spoon and not a fork (for safety reasons) and that the spoon does not reach down to the level of the table. Plates and dishes will need to be raised up about 5 inches.

Linda from the MNDA called round this afternoon to collect some of my new short sleeved shirts which she is going to take away and modify with Velcro fastenings. Can’t wait to try them out as the temperature has been steadily climbing lately and I’m still dressed for the autumn!

I went for a short walk along the edge of the field behind the house this evening with Francesca, my lovely friend and carer. She’d come round especially early to give me this treat which I was so grateful for despite being plagued by this horrible headache. Because of my less than stellar health today I couldn’t walk as far as I would have liked but it felt so good to be out in the evening sun.

22nd April – A package from the hospital arrives

I received a package by special recorded delivery at lunchtime today but had to wait until my evening care call before there was anyone around strong enough to open it! It was of course the Oximeter that the folks from the Respiratory Centre down at the Southampton Hospital had forewarned me about. In preparation for tomorrow’s appointment they have asked me to perform an overnight oximetry test which is a flashy way of saying they wanted to record the oxygen saturation levels in my blood whilst I slept. Now I don’t have a night call at the moment so had to ask Alison much earlier in the evening to attach the device to my wrist and finger in a way similar to the photo. That left me needing only to press the start button. So during the remainder of the evening my left hand was of limited use (good job I type with my right) and I had real fun trying to undress for bed. In fact at one point I got completely stuck and couldn’t get my left arm out of my sleeve. Once I’d activated the Oximeter I gingerly slid into bed and just lay there motionless the whole night – not so hard when my upper body is paralysing. It took some time to get to sleep and I was really grateful when morning arrived.

My overnight oxygen saturation monitor

23rd April – An afternoon at Southampton General Hospital

I had my first appointment with Dr Wilkinson, a respiratory specialist at Southampton General Hospital this afternoon. I had been referred by my Neurologist who was concerned by the drop in my latest lung function test results. The appointment was split into two sessions; in the first I was handed over to nurse Carol who performed a series of tests which included blood pressure (which is apparently a bit high), an exhale test (hard for me to do), a sniff test (a probe connected to a machine is inserted into one nostril whilst the other is blocked off), and an arterial blood/gas test (not as painful as everyone was telling me, thank goodness. Although the nurse did have me worried when she said “I’m afraid this is going to hurt”!).

With the tests completed I was taken to Dr Wilkinson’s office where she discussed the findings with me. Firstly we reviewed the data captured by the oximeter I wore to bed last night and had brought along with me. She showed me a graphical printout of my oxygen saturation levels throughout the night. There were a few spikes on it which she explained were consistent with REM sleep but concluded that my oxygen levels were normal. So too were my CO2 levels as revealed by the blood/gas test. Phew, that was quite a relief to me as I knew only too well that my ability to breathe out was quite weak. Unfortunately the breathing and sniff tests have shown further deterioration of my respiratory muscles and this is worrying for me as it was only last month I had a lung function test – and they are still weakening! She agreed that the indications are that we are now seeing a downward trend and that the disease is attacking my breathing muscles. Nevertheless she feels that at the moment my respiratory muscles are holding their own and allowing me to function normally. She said it’s especially encouraging that I can still sleep horizontally without breathing difficulties. So overall my results are okay – but on the bottom end of okay.

We then discussed options should my breathing muscles weaken further. Something she could offer is NIV (Non-Invasive Ventilation) which is a way of assisting you to breath during the night so that you get a good night’s rest and don’t wake up with headaches. However all of this comes at a cost. The equipment installed in your home needs to be monitored by a trained person. As I live alone it would mean having a carer in the house all through the night. Something to think about. She has scheduled me for another appointment in June so she can check for further deterioration and also give me time to think about the implications of NIV.

24th April – Man’s best friend?

Thought I’d go for a little walk this morning to get some fresh air – bad idea! On the way back a large boisterous Irish Setter came bounding across the field on a missile trajectory towards me. I was just getting up from a bench where I’d been catching my breath when it leaped at me almost causing me to lose my balance. Try as I might I couldn’t get the dog to stop jumping up at me until it’s owner arrived by which time my trousers and jumper were covered in mud and saliva – nice! All I got was a token “oh I’m sorry he thinks everyone is his friend”. It may seem funny or trivial to an outsider but had I been sent off balance I could have fallen flat on my face and would not have been able to raise my hands to protect myself. I’ve nothing against dogs and indeed we had a few when I was growing up, and I know he was only being friendly, but large untrained dogs that just lunge at strangers are a danger to children, old people or the disabled. Give me a cat any day!

28th April – A meeting to discuss adaptations

Had my first meeting with Marion, my Adult Services OT, in what seems like ages. I’d already primed her in an email I’d sent a few days ago about the sort of things I was now having difficulty with so I was hoping for lots of ideas and more importantly, help. Unfortunately I came away feeling more than a little frustrated. I’m reaching a point where I need to start looking at the more expensive adaptations ahead of their actual need and was hoping to get not only some advice on what would be suitable for my particular needs but also some financial help. However, I’m being told that in the current climate money is tight and only the most important and immediate work is approved. If I want anything I will need to self-finance it. There is a Disabled Facilities Grant I could apply for but like almost everything it is means tested. I’ve been given a phone number to call if I want a mini means test ahead of the main one but I am none to hopeful as I have savings which have prevented me from obtaining other benefits. As for help and advice, again rather disappointing. I need to start looking at bathroom adaptations as my first priority but all I came away with was the name, address and website of a showroom in Cosham, Portsmouth. Not exactly easy for me to get to on my own. Apart from that I managed to get her to take some measurements in the bathroom to see what could be fitted in. As an alternative I had her look at the garage which is a possible candidate for conversion although the problem is it’s not very large. It will be interesting to see what she comes up with.

Mark