Tuesday, June 28th 2011

Home again and the beginning of the next phase

I was discharged from St Michaels Hospice at 4 PM this afternoon, four weeks exactly since I was admitted. Over the past 12 months I have spent a total of three whole months (spread over three visits) at the hospice which makes this my second home! Before moving on I would just like to express my sincerest gratitude once again to all the staff and volunteers at the hospice who made my stay there a very enjoyable one. I know I’ve said this before but truly if you could take what they have at the hospice, scale it up, and wrap it around the world, then the earth would be a much better place for everyone.

I had mixed feelings about leaving the hospice because I knew that I was entering a late stage of the disease and that effectively I was going home to die. That may not happen just yet of course but it is certainly something that I am acutely aware of every time I try to breathe. The agreement I have with the hospice however is that should my difficulties become too much to manage at home during the final stage then I will transfer to the hospice, otherwise my desire is to spend my remaining days in my own home with the hospice at home team supporting me there.

I have some new equipment in the home that needed to be in place before I was allowed to be discharged. The equipment is an oxygen concentrator, a machine for providing oxygen in the event that I suffer another shortness of breath episode. We also have an oxygen cylinder as a backup in case of power failure. I would stress however that this equipment is only going to be used in emergencies. I am not planning to spend my days hooked up to an oxygen supply.

My new 24 hour/7 day a week care package commences this evening meaning that the number of hours care I receive increases from 84 hours to 168 hours a week! Previously there were several gaps in the day where I was alone. With my breathing in decline that is no longer sensible so I now have a waking nurse each night and a carer to fill in the afternoon gap where I used to have some time to myself. I had fought to maintain some degree of independence for as long as I could but even I was ready to accept the changes after recent events. It will seem strange at first always having someone here with me but also reassuring. Tonight we begin with a nurse from the hospice at home team.

Mark

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Sunday, June 26th 2011

Life at the hospice

It’s been a couple of weeks since I last gave you an update on how things are progressing here at the hospice so I thought I would spend the afternoon bringing you up to date.

My health continues to decline and for a while at least threw a new surprise at me in the form of heart palpitations which persisted for four nights. Not recalling ever experiencing this it was rather frightening waking up in the early hours of the morning to find my chest pounding away and not even in a smooth rhythm but rather erratic. The cure was found when we removed all the tablets I was taking in the evenings. Phew! The last thing I need on top of everything else is a dodgy ticker! As for the tablets, well I can live without them as they are not critical. In fact I’ve just decided to stop taking Riluzole altogether after being on it since 2007 as I now feel that any benefit it could have given me is now behind me. In fact everything that I have read about it suggests that at most it will give you another 2 to 3 months of extra life. That’s one less thing to worry about.

I’m still experiencing problems breathing particularly when sitting upright and I’ve already had a couple of minor frights when it felt like my breathing had rapidly declined and I was starting to struggle for breath. For this reason I have become very wary about going anywhere in the wheelchair for fear of running out of breath. Consequently most of the past couple of weeks have been spent in bed although not always in my room. On a couple of occasions the staff wheeled my bed into the conservatory so I could enjoy a change of view.

I’m really grateful that I’m allowed to use my computer at the hospice. Without it I have no idea what I would do all day other than get bored. Oh and thank you Jason and Chery for those lovely earphones you bought me last year. They are really coming into their own lately as they enable me to listen to music whilst working away without speakers interrupting the microphone. Having a good selection of electronic books and magazines has also kept my mind entertained and engaged.

Working busily in the background the folks at the hospice and my care agency have been busy arranging extended care for me for when I go home. Yes after a long battle to maintain some independence I am moving to 24 hour care in my own home. I’m sure my family will be relieved to hear this! Truthfully so am I now that the disease has reached the state it has. So this will be my last weekend at the hospice. I am due to leave on Tuesday although this has not yet been confirmed.

I’ll leave you with a few pictures that Suja kindly took of me working on my computer recently.

In bed at St Michaels Hospice. 17th of June 2011In bed at St Michaels Hospice. 17th of June 2011

 

In bed at St Michaels Hospice. 17th of June 2011

In bed at St Michaels Hospice. 17th of June 2011

Mark

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MND awareness week 18-26th June

For the want of an arm

I’ve been thinking recently about how big an impact on your life the loss of a single limb can have. So much would change if I only had the use of my right arm. Here are 20 things that I could do for myself once again:

Scratch myself

Brush my own hair

Give myself a shave

Brush my own teeth

Wash my own face

Put my glasses on

Turn the pages of a book

Feed myself

Have a drink (without using a straw)

Pick up and reposition things

Shake hands with people

Point at things

Wave at people

Write my name

Operate a TV remote

Operate a computer keyboard

Pick up and operate the phone

Smooth out creases in fabrics

Operate an electric wheelchair

Work a camera

And that’s just one limb!

Given enough time MND will rob you of the use of all four limbs. And your neck. And your speech. And your swallow. And ultimately your breathing.

It’s MND awareness week here in Britain. Up and down the country people from the MND Association will be collecting for much-needed research and to help those struggling to live with it. On behalf of all those like myself please can I ask that you give generously for this very worthwhile cause. Thank you very much.

Mark

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Sunday, June 12th 2011

Settling back in

Today has been my 11th full day back at the hospice. I’m pleased to say that some of the apprehension I was feeling when I first arrived has slowly dissipated. My breathing is still a big concern to me of course especially as I am reminded of it every single day. However it doesn’t preoccupy my thoughts to the same degree that it did a week ago. The memory of that frightful suffocating experience is fading away thankfully. Good job our minds have a built-in defence mechanism otherwise we would be forever tortured by harrowing experiences from our past.

I have been able to take advantage of the hospice’s wet room on several occasions so I can enjoy an exhilarating shower. How often I do it depends on what I wake up like. My positioning is still playing a key part in how easily I can breathe. The more upright I become the harder it is. I’m guessing this has something to do with all my weight bearing down on my diaphragm which is just about the only muscle keeping me breathing, a somewhat chilling thought. I did have a bit of a fright today in fact when I was left sitting upright for a few minutes too many and began to struggle to breathe. So it’s certainly seems like I have turned another corner and I am now resigned to the fact that I will spend a greater degree of my time in a semi-reclined position.

I’ve been trying some tablets lately to help me get some rest at night. Getting to sleep lately has been rather difficult so the doctor prescribed something which might help. Trouble is I now have the opposite problem because in the mornings I have a devil of a job waking up!

I had a meeting early in the week to discuss what happens next and would I like to go home? Good question. If I was literally at death’s door I would probably ask to stay here and spend my final days in the company of some wonderful people. However MND is a very unpredictable disease as I know full well from my own experiences. It’s true that my breathing is very weak but this situation could stabilise again and go on in a similar fashion for a few months if not longer. Therefore it is my intention to go home again. However before I can do that we need a mechanism in place so that if I should suffer another breathing episode there will be equipment and trained staff on hand to deal with it. And because of recent events it will mean a transition to 24/7 care for me. That of course equates to money and finding the right resources.

I’ve brought my Possum Primo environmental control system to the hospice as we discovered that it is capable of operating my wall mounted TV system. Now I can lay in bed at night and watch and control TV myself. Neat! It’s like a little bit of home from home.

The rest of the week has been a rather pleasant one. I’ve had three complimentary therapy sessions in which my shoulders, hands, and feet were subjected to a very enjoyable massage with sandalwood and Mandarin oil. I’ve had visits from my aunt and uncle as well as an old friend from work. Thanks Ted, your infectious laughter soon brought a smile to my face. Great seeing you again. The upbeat nature of the week has left me feeling a lot better in myself and more positive to. I’ve even been able to eat a little bit more than I have been lately. Clearly then feeling good is all about surrounding yourself with positive experiences and good people. It may not stave off the inevitable but it sure does make the time available that much more enjoyable.

With my friend Ted at St Michaels Hospice. 11th of June 2011. Photo courtesy of Suja

Mark

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Saturday, June 4th 2011

Return to St Michaels

On Tuesday this week I was transferred to St Michael’s Hospice where I have been ever since. I think the intention is to see what can be done to manage my breathing difficulties, possibly try BiPAP again, and sort out what to do about my care package, none of which had been discussed with me yet.

Unlike the constant hustle and bustle of a busy hospital there is a calming influence here at the hospice which I find much more restful. I’ve been able to get into the newly refurbished garden and Labyrinth on several occasions and just being able to get some fresh air and sunshine has made a world of difference. I’ve also got access to my computer again so have something to occupy my mind. My breathing is still giving me a lot of concerns though. I am not sleeping very well and in fact I’ve had several nights where I’ve not got any sleep at all so I’m feeling quite exhausted. Also my breathing is now starting to be dictated by the position I am in. It is for instance becoming harder to breathe normally when sat in an upright position and it is already causing problems when I use my shower chair during the mornings for my personal care. Also I am now having to use the wheelchair reclined back further and I am spending more time lying on the bed catching my breath. In fact this is now where I am using the computer – lying back in bed. But dictating into my microphone is leaving me exhausted so I am steadily reducing the hours I can use it. In addition to all this I am now starting to take anti-sickness pills several times a day to combat the queasiness I feel around mealtimes. After last week’s breathing episode I feel I have turned another corner with this disease and I now face learning to live with reduced abilities once again.

Mark

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Monday, May 30th 2011

Downtime

I’ve been in hospital for five days now hooked up continuously to an oxygen supply. Because it has been a bank holiday weekend staffing levels have been rather light so I’ve not seen much of the doctors. The hours have simply dragged by and these five days have been unbelievably boring for me. Being so heavily paralysed I am completely dependent on others for everything and all I can do is look around at my fellow patients with a degree of envy at how they are able to use their arms to read books, feed themselves, operate bed lights, call family from their mobiles etc. whilst all I could do was stare at the ceiling or the opposite wall. Even calling for help is difficult as my voice is so low that no one could hear me so they have rigged up a little brass bell that I try to kick with my foot. For the life of me I cannot understand why hospitals do not make provision for paralysed people to call for help. Everyone assumes we can all use our arms.

Since arriving I’ve been in a rather reflective mood. Last Wednesday’s experience has really shaken me up. I came very close to not being here and that is a chilling thought. Ever since I had MND I’ve been able to treat each physical loss as a disability which I would then use my mind to work out a solution for and then giving myself a pat on the back for my ingenuity. But now having felt the cold hand of fear resting on my shoulder last week I have been brutally brought back to facing up to the fact that time really is in limited supply now that a life critical system is under threat. At the moment I don’t mind admitting that I am quite frightened, especially at the thought that it may happen again. I only hope that after this we can put something in place in my home for emergencies. Suffocating is truly awful.

I’ve been trying NIV (non-invasive ventilation) for the past four days for short intervals. They connected me up to a BiPAP machine with a mask that covers both the nose and mouth. Unfortunately I don’t seem to be able to tolerate it very well (the longest session I managed was about an hour and a half). I find it very claustrophobic and nobody is able to understand what I am saying with the mask on which is worrying if I need it removed quickly (remember, I cannot pull it off my face myself). Every time I would open my mouth to say something air would rush in overpowering anything I would want to say. I also found that I could not ignore it and found myself concentrating all the time on my breathing which would defeat the object if it was left on overnight. On top of all this I found it very tiring. So for now it’s back to square one. I am aware however that there are different types of mask so it might be possible to try one that just covers the nose. Unfortunately though, they are not available from Basingstoke Hospital so it might mean a trip down to Southampton.

Mark

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Wednesday, May 25th 2011

Fright of my life

It had been a good day up until that horrific moment. I’d been able to spend some of the morning out in the back garden on my level access patio soaking up the rays of the sun whilst listening to birdsong. Later in the afternoon I’d had a visit from one of the lovely carers who used to look after me and we had been able to enjoy a good chat and a catch up. But by late evening when I was being prepared for bed I started to experience difficulties in getting my breath. Each breath was getting shorter and shorter and the situation was developing rapidly. Debbie, to her credit reacted immediately and called the emergency services and placed an oscillating fan in front of me. By this time I was struggling to get any breath at all. My heart was pounding, my skin felt very hot and my whole body was screaming for oxygen. The voices around me seemed to be fading out and all I could cry out in a pitiful voice was ‘I’m dying, I’m dying’. Honestly that’s exactly how it felt. Instinctively in that moment I thought I was going to die as I was thinking ‘so this is how it all ends for me then, on Wednesday evening’. It was a truly frightening experience.

The first responders arrived on the scene very quickly and administered oxygen. Apparently my oxygen saturation had dropped right through the floor. The paramedics arrived shortly afterwards and I was rushed to hospital hooked up to oxygen. I then spent the next few hours having a battery of tests including chest x-rays, blood/gas tests, heart readings. Nothing obvious was picked up (or at least communicated to me) apart from the fact that my CO2 levels were a bit high. Initially there was the possibility that they might have wanted to send me home again but by midnight that was not practical as I had no care package in place for these hours so it was agreed that I would stay in the hospital overnight for observation.

Before signing off I would like to express my deepest gratitude to Debbie for reacting to the situation quickly and professionally. Had she not done so I might not be here now as I have a DNR (do not resuscitate) stipulation for situations like this written into my ADRT (Advanced Decision to Refuse Treatment) should I slip into unconsciousness. I would also like to say a big thank you to the first responders and the paramedics who took such good care of me.

Mark

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