Sunday, August 28th 2011

A Tough Month

I celebrated my 51st birthday last Wednesday not exactly as I imagined it would be but instead wrapped up in bed unable to move and fearful of the future. My breathing continues to worsen, so much so now in fact I have been effectively confined to bed 24 hours a day – every day’! Any attempts to leave it and reposition myself leave me gasping for air. It has been a particularly frustrating month for me as I have seen valuable time squandered whilst I lie here helpless. Even the computer which I have long depended on to keep my mind fully engaged is now becoming difficult to talk to as the volume in my voice continues to diminish. Quite often now I have to endlessly repeat a sentence or phrase before the software is able to understand. No wonder it takes me so many hours to create the simplest documents. My OT has been made aware of the situation so I’m hoping that she can set up another assessment on my needs with AbilityNet. I really hope that they can come up with something soon otherwise I shall be facing the real possibility of being physically unable to communicate with my digital world and those around me. But it isn’t just my computer that is suffering; I am also finding it difficult for people to hear my voice on the telephone as well. In addition, Debbie, one of my carers, has obtained a baby monitor so they can listen out to changes in my voice wherever they are in the house.

My energy levels have fallen through the floor this month. I wake up each morning with very little desire to do anything other than go back to sleep. By the time I’ve got myself sorted out the morning has gone and I have very little to show for it. And so for the rest of the day I drop in and out of sleep seemingly finding escape from the problems of the world around me.

I’ve lost my appetite almost completely now. Very little food gives me any real pleasure and the tastes and textures do nothing to stimulate eating. And yet bizarrely around midnight my stomach is growling in complaint at a lack of normal food even though I know full well that by morning I’ll be struggling with a mouthful of cereal.

I’ll sign off now with a photograph taken over the week leading up to my birthday when my whole team of carers descended on me for a surprise birthday gathering. There were supposed to be more photographs in this post but there appears to be some kind of technical glitch preventing me adding them to my post. I’ve already spent an utterly exhausting afternoon trying to clear the problem without any progress. I suggest you come back in about a week to see if I’ve made any progress.

With my niece, brother and nephew at my bedside where I now spend all my days. 17th of August 2011


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Sunday, July 31st 2011

Feeling exhausted

Things have not been going too well for me these past few weeks and I’ve spent most of that time confined to bed thanks to my weakening breathing muscles which are really starting to dictate what I can and cannot do. Consequently they’ve been making life a little bit miserable lately. I’ve only got to be a few degrees out of my ‘sweet spot’ and I am gasping for air and unable to talk. To make matters worse I developed a bit of a rattle on my chest last week which culminated in a late-night visit from the doctor who prescribed some antibiotics which I am still working my way through.

The hot weather we’ve been enjoying lately has brought with it further difficulties for me making life distinctly unpleasant. The high temperatures have made breathing even more difficult and tiring and I’ve been going to sleep with an oscillating fan by my bedside not only to help me to keep cool but also in some way hoping it will assist with my breathing. My appetite has been fluctuating wildly. Some days I can do no more than sip on a few ensure high calorie drinks whilst on others I can be coaxed into eating some solid food. But walking hand-in-hand with my poor appetite are the feelings of nausea which make me feel even worse. Fortunately I have some tablets to help combat it.

To help alleviate the positional problems I’ve been facing when taking a shower, Caroline, one of my OT’s has made arrangements for a different model to be delivered, one which allows the chair to be reclined a lot further. It’s not perfect but at least I can breathe a little easier whilst being washed and that at least removes some of the anxiety. It was getting to the stage where I was becoming nervous about leaving the bed to take a shower!

Apart from this everything else is running okay although boredom is starting to set in due to lack of stimulation. The new night care is working out well and my lovely new mattress really makes laying in one position for a long period of time bearable. Just as well really as my world at the moment seems confined to 6ft x 3ft.


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Tuesday, July 5th 2011

The first week of full-time care

It’s now been a week since I returned home and moved to 24 hour care. The transition has gone very smoothly I’m pleased to say. Filling in all the blank spaces so that I am never without somebody else being with me has given me greater peace and security. One big fear I’ve had since losing my mobility has been the thought of being trapped alone in a burning house. Now that fear has been removed and I feel more at ease. Most of the extra time I’ve gained is of course ‘invisible’ to me as hopefully I will be fast asleep. Nevertheless I have been able to spend a little bit of time getting to know my new waking night nurses.

I have a new mattress. The one I was previously using (just a foam core) was not designed for continual use like I am subjecting it to now. The new one I have is a super duper alternating pressure mattress designed for constant usage. Over the past year or so I’ve tried several types and the only one I could really get on with was the most expensive one (which I’ve been using at the hospice) which is not available in the community. However, the kind folks at the hospice have been able to negotiate with the MND Association for them to lease one on my behalf. It arrived a few days ago and has already made a big difference to my comfort level.

Now I am back home I’ve been able to play around with my wheelchair to see what positions I can tolerate. Unfortunately it doesn’t look like I’ll be able to continue to work at my computer whilst sitting in a wheelchair because sitting upright causes shortness of breath and difficulty speaking. As this is the way I operate my computer it will no longer be practical as I would be out of breath in minutes. What I can do however is to lie in a semi reclined position and either sit on the patio or watch TV for a few hours. All work on the computer is now being done from my bed with a small table positioned over the bed with my laptop placed on top. At least this way if I get tired I am already in the best place to relax.

I’ve been suffering from terrible skin irritation lately. It’s mainly around the underside of my lower legs, basically the area in contact with the mattress. We’ve been trying various creams without success and we’re still looking for a solution. I’m also feeling very tired lately. I just cannot seem to keep my eyes open for very long. I must spend half my day drifting in and out of sleep. No wonder I don’t seem to achieve much any more. Concentrating for long periods is slipping away.

Apart from that the past week has been a busy one for appointments with district nurses and doctors making regular calls. I’ve spent most of that time in bed reading books and magazines during the day and watching TV and video at night.


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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.


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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


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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


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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.


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