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Tuesday, 30 September 2014

No.95. Give us a break.

Today seemed quite manic for some reason. The physio came to do the routine check ups on Chris. She told us that Cornwall wheelchair services would not supply the MND recommended Epioc wheelchairs, which was something we didn`t want to hear, plus he would need to be completely off his feet before they would assess him for one, which would then involve weeks of him waiting for a less suitable wheelchair to be be delivered. How is it right that people are left with absolutely no independence like that? It is so wrong.

Chris also had another PIP letter saying he has to have an assessment on the 20th now. I was told to phone again so they could postpone it again. What a way to run a system. I emailed Chris`s MND nurse and she said to contact the MNDA as they were now employing someone specifically to deal with these problems. The person I spoke to took down Chris`s details and she said the usual wait for PIP was around 6 months and if he hadn`t heard by then they would write on his behalf. She also recommended writing to our MP too, which I did.

We then had phone calls from the palliative care nurse wanting to make an appointment and the dietician telephoned to do a phone consultation with Chris and to arrange delivery of the feed pump and feed.

The local MND visitor then phoned to make an appointment too. We then had family phone calls and the odd cold call thrown in, I felt like I had been on the phone all day.

Chris had to make a couple of business calls, which he was concerned about because he is very self conscious of his speech and I think that makes him worse.

On a good note Chris`s cousin came to visit with details and tickets for the fund raising fashion show she is arranging for the MNDA. She has worked hard, we hope it goes well.

As much as we hate taking Chloe back to Brighton, I think we`ll both be glad to get away from home again for a couple of days.

We really can`t get away from this disease, no matter how much we try. Give us a bloody break MND.

No. 94. Life goes on with MND.

Busy day today, Chris has a physio visit, the dietician will be phoning, plus I have to make sure all of Chloe's stuff, plus a wheelchair will fit in the car. We are taking her back to Brighton tomorrow as she starts her second year at BIMM doing her music degree next week. 

Not looking forward to that in many ways, we will miss Chloe like crazy, but we are excited for her too as she should be recording her first EP in November and is excited to be going back. Thank the Lord for Messenger and Skype. It will be the first time I will have to drive the whole way home, a 7-8 hour drive depending on the stops. Chloe will share the drive up. I know Chris really misses driving, but his weak feet and legs make it too dangerous for him to drive now.

I managed to book a disabled access room in the Travel Lodge so there will be room for the wheelchair and Chris will be able to shower. We do love Brighton once we get there. We are going to visit a friend of mine too on the way home which we are looking forward to.

MND affects every part of your life, there is nothing we can do now with out having to consider it and it's consequences. It won't stop us living life though, we just have to plan things differently, like I've said before, can't let MND have all it's own way.

Sunday, 28 September 2014

No 93. PEG stuff again.

Dealing with Chris's PEG has become part of our normal routine now. The one thing we hadn't done was the 'plunge and rotate' as the PEG wound needed to heal for 3 weeks.

I had been trying to unclip the PEG button for a couple of days (I think that's what you call it), but it was really stiff and I was a little scared of hurting Chris, but I tried again yesterday and managed to undo it, so we did the first 'plunge and rotate.' The reason for doing this is to stop the back stopper of the PEG which is against the lining of the stomach, growing into the stomach itself. Hope that makes sense.

When the PEG button is unclipped you have to clean it well, move it up the tube, push the tube back into the stomach a teeny bit, rotate the tube and then pull it out till there is resistance and then put the clip back to where it was. We also had to change the end where the syringe attaches as the nozzle clip wouldn't attach anymore and I managed to change that as well. The DN said they don't last very long and Chris was given a few spare ones just in case.

The dietitian is supposed to be calling today to arrange delivery of the PEG pump and feed. Hopefully that will arrive next week as we are off again for 3 days on Wednesday as we have to take Chloe back to Brighton.

Chris was happier yesterday, he went out on to the farm on his scooter, that's always guaranteed to make him smile.

Saturday, 27 September 2014

No.92. Losing the voice.

I'm not sure what makes me sadder, watching Chris lose the ability to walk and use his hands or hearing him lose the ability to talk.

The voice, it is something we all take for granted. It's how we express ourselves, it's how we communicate. Hearing the voice of others brings us pleasure, from recognising the voice of a loved one down the phone, hearing someone say they love you, or listening to a beautiful song, all made possible with the voice.

Then one day you get this awful disease. It will slowly cause your motor neurones to die, it might start with your legs, it might start with your swallow, eventually it will most likely affect your voice.

Chris's speech started getting slurry quite early on, it is slowly deteriorating and has always been much worse when he is tired.

We've just come back from the first holiday we've had in years. It was good to get away, but as I said in my last blog, I think it was tough for Chris having to be wheeled around, but I also noticed how quiet he was too. Even now we are at home he is still pretty quiet. I asked him if he felt his voice was deteriorating and he said that his head knows what he wants to say, but he can't always form the words. If he takes a deep breath it helps, but that takes effort. I asked him how it made him feel and he said 'out of the ordinary'. He feels very self conscious that he sounds slurry and I think that is causing him to be reluctant to speak sometimes. That and the deterioration in his hands and balance have made him feel quite miserable at the moment. 

I don't think anyone who hasn't lost their voice permanently can really understand what it must feel like. I try, but how can I? I can still rabbit on about all kinds of inane stuff, I can sing along to a song if I feel like it, I can shout and get angry if I need too, but just saying a few short sentences is an effort for Chris now.

I know he has been referred to the 'Speech recognition 'people, but I hope there won't be a gap between his speech really deteriorating and something to help him communicate being set up. They said the waiting list is long.

Why does MND have to be so cruel ? Why does it have to be so inevitable? Why did it have to choose my darling husband ?  This disease does seem to pick on the truly nice people.

No. 91. Back home

It's been wierd not writing a blog for a week. Not having any wifi or mobile access where we were staying was a shock to the system, but it was nice too in a way, not to have the distraction of it.

We had a lovely break. It wasn't too far to drive from here, about 3 hrs, the bungalow was comfortable, but maybe I should have researched the location better. We were 8 miles from the nearest shop!

We visited all the places we planned like, Longleat, Wells and Glastonbury Abbey. They were all really wheelchair friendly as was Haynes Motor museum which Chris really enjoyed, especially when he saw they had a TR8 there. He had to make do with a TR7 and do his own V8 conversion on his.

We also went to Cheddar Gorge. I knew that would be a problem, especially the caves, but Jordan, Tracey and Chloe managed to go in and see them.

It was lovely to all spend so much time together, but Chris was very quiet a lot of the time. I think the reality of having to be pushed everywhere everyday kind of hit home. It was partly his lack of independence and partly the thought of me having to push him, which I didn't mind at all, but I understood where he was coming from. I do think talking is quite an effort for him now too. We had some fun evenings though with him playing games like Monopoly and chess with Chloe, Jordan and Tracey, even I played Monopoly last night, quite the miracle, I hate playing board or card games usually.

We took an impromptu visit to Weston-Super-Mare yesterday. Ok, it was very flat and I've never seen so many people in wheelchairs or mobility scooters. At least Chris didn't feel so out of place. Not sure if I would go there again though, I would prefer Brighton anyday I think as a comparison.

We got back home late in the morning. Chloe and I shared the driving. On arriving home though Chris had a text to remind him of his PIP assessment on Monday. We were told that had been cancelled, so I had to phone them again. They have the paperwork, but it still hasn't been dealt with yet so the woman on the phone said that they have postponed the appointment for a month till the end of October. Until the claim is dealt with he will still be in a queue to be assessed apparently. I just have to keep phoning. The time taken to deal with a PIP claim is appalling really, especially as it seems to be a private company dealing with it. It has been 4 months so far and I've heard some people say it can take much, much, longer. Let's hope some people don't die before their claims get dealt with eh? Chris is supposed to be being fast tracked too.

Well I have the usual holiday washing to catch up with and Chris has felt 'normal' again by dealing with the farm post and has gone outside on his scooter. He has his independence back again. 

The break was nice, but it is good to be back home.

Friday, 19 September 2014

No.90. Holiday time.

We are off on holiday today. Apart from the odd weekend away for weddings or visiting Chloe, we haven't had a holiday for 12 years. I booked it when Chris was first diagnosed. We had no idea how he would be by this time, so I booked a disability friendly bungalow in Somerset. Chloe and Jordan and his wife Tracey are coming with us, while Tam and Karl with be 'pet' sitting for the week. Apart from driving on the M5, I am looking forward to it. We don't get much motorway practice down here in Cornwall and I always used to leave the motorway driving to Chris. Chloe will drive through Cornwall so that will help a bit.

It will be really nice to spend some time away together as a family, time to make a few memories. Jordan will be 27 while we are away, so that will be a nice family celebration too.

I want to try and keep up with my blog, as a diary for my own records if nothing else, but I'm not too sure of the wifi access, so if I don't post any for a while, that is why.

Moral of the day..Live life while you can as you never know what it is going to throw at you. 

Thursday, 18 September 2014

No.89. Wishing life was `normal`.

Yesterday started with a mad rush as I had to go into Helston for my Weight Watchers class (sadly for me it has taken Chris getting MND to make me realise that I have a choice with my health).

I had to get back straight away as the enteral pump nurse was coming at 10.30am to do the feed pump training. Yet another nurse who works alone covering the whole of Cornwall. They must spend a third of their day travelling. She was lovely though and went through the whole process of setting up the pump, how it works, what to do if things go wrong etc. Chris hasn`t had an order put in yet, so she said she would come back again in October if we needed to go through it again. She also went through PEG care again and had a few extra useful tips, like massaging the tube to get rid of any feed residue.

I had rung the dietitian on Monday as the appointment to see her wasn`t until November and I thought that was a bit too far away and coincidentally she telephoned today to talk things through. She will phone back on the 30th to check in and then place the first delivery of the pump and the night feeds, which I think will be 500ml bags that will be slowly fed to Chris over night while he sleeps. He has lost a couple of pounds in weight because he is eating less, so hopefully that will stem anymore weight loss. She also said that a dietitian will visit him at home then. I`m not sure that he is very happy about sleeping at a 45 degree angle, which is necessary to stop reflux from the feed, but I`m sure he will get used to it.

So many things we have to get used to with this disease. Sometimes it`s hard to remember what `normal` was like. We would so wish life to be normal again. I would be nagging Chris for working too many hours, he would be like a pig in muck, or should I say a cow in muck, doing the job he loves. I'm sure everyone has dreamt of a day when they wouldn`t have to work, especially if they hated their job, but it means nothing if you don`t have your health and even less if you have to give up a job that you love.

MND steals your body and steals your life in all kinds of ways, it is so cruel.

Tuesday, 16 September 2014

No.88. Holidays and 'speech' days.

I'm amazed at how well Chris's PEG area has healed. Everyone was right, it is so easy once you get the hang of it. I haven't done the plunging thing yet as the nurse said to wait three weeks, but apart from that all is good. I think Chris's tummy must have been swollen too as the PEG clip doesn't seem as tight as it was. No wonder Chris is feeling more comfortable. He has been going outside for a couple of hours a day now. I think it keeps him sane.

I thought I'd see if we could get the wheelchair and mobility scooter in the car, plus Chloe and us, for the holiday. Well they went in, but we wouldn't fit any luggage in as well, so we settled on taking just the wheelchair. It's a bit like when the children were young in a way, you have the equipment to take and the planning of suitable places to go. We are going to Somerset for a week and I am hoping it will all be as flat as we hope Somerset is. If not Chloe and I are pretty good at pushing Chris up a hill in the wheelchair together. Many hands make light work. 

The MNDA have a campaign at the moment about improving the provision of communication tools for when the voice is lost. We have been told in Cornwall that we have access to the top of the range speech recognition aids. NHS England have chosen the south west as the first area for this to be rolled out. They should get on and do it in the rest of the country. I reckon they chose the south west as the amount of people with MND would be less and therefore cost less. There is quite a wait to be assessed so Chris has been put forward for an assessment now, even though he is still understandable at the moment. Someone comes down from Devon to do it.

In the evenings I do have trouble sometimes understanding what Chris is saying, it is always worse when he is tired. I am dreading the day when he can't talk anymore. He is more fortunate than some in that he will have access to the right equipment, but it can never be the same. Conversation is instant and in the moment, there has to be some delay, even with the best of technology. MND steals the very things that make us function as human beings, the ability to walk, talk, eat, even breathe eventually. Mother Nature must have been having a really bad day when she decided to dump this bloody awful disease on the human race. 

Monday, 15 September 2014

No.87 The distractions of family life.

Yesterday was back to normality with a bang. The morning started with the now usual routine of cleaning Chris's PEG which is healing really well. I then had to deal with Chloe stressing out over uni enrolment and her only just finding out she is supposed to be there for enrolment day next Thursday, which is while we are on holiday. We had visions of her having to catch the coach from Glastonbury to Brighton and miss half the holiday. Luckily they have a second enrolment day in October, so we breathed a sigh of relief about that one.

I then had to take Tamara to Treliske (I feel I am getting to know that hospital so well) as she was having her wisdom teeth out under GA, so I had to go with her. That all went fine. When we got home I discovered my son Jordan had dropped a 50kg weight on his foot while at work (he is an agricultural engineer) and had to go to hospital. Amazingly he didn't break anything, but he is on crutches and has a very sore and swollen foot. As he is self employed he is not happy.

I felt a little like one of those stretchy men yesterday, being pulled in all directions, but you know, in a warped kind of way, it was actually refreshing to be worrying about something other than MND for a change.

When I got back with Tam, Chris had gone out on his scooter on the farm somewhere, that's OK, he is feeling so much better after the PEG op and it does him good to get out. Though hearing that he had climbed up on a chair and then tripped over our Scottie and landed on the floor, wasn't quite what I wanted to hear. I think he had chatted to a few people yesterday too and I could tell, as once again his speech was really bad during the evening. He literally wore his voice out talking. He was smiling and happy though and that is the main thing.

Sometimes distractions from the unwanted reality of MND, can make a change, even if those distractions are not particularly welcome either. At least those other things will resolve themselves unlike MND, I'd rather have a few 'normal' family crisis's anyday, than watch the inevitable decline of this awful disease with Chris.

Sunday, 14 September 2014

No.86. My hero.

I Today I thought I'd tell you a little bit about Chris. He was born into a farming family, he was actually born in this house, so this farm truly is his life. He has one brother and two sisters and his 92 year old dad is still with us.

Chris and I married when we were 36. I had been married before and had two children from that marriage, Jordan and Tamara. Chris had quite a few girlfriends before we got together and I tease him often about that fact, but he never married until we got together romantically. We have actually known each other since we were 19, but I guess life wasn't ready for us to be together then. We will have been married 20 years in October. We had Chloe the year after we were married. 

Christopher has loved horses all his life and learnt to ride almost as soon as he could walk. In his younger years he did some unaffiliated show jumping and still loves to watch anything horsey on the Horse and Country channel. He is most proud that the ex race horse he still owns (he is retired now and living his days out on the farm) was once ridden by Frankie Detorri and he won on him at Goodwood. He also loves cars and has owned a TR7 for well over 25 years. He converted it to a V8 engine a long time ago, although it has been off the road for a couple of years. He wants to get it back on the road with help, but I will have to drive it for him now. He is also obsessed with number plates, must be a man thing I think.

He has worked hard day in day out, with very few days off over the years, trying to keep our heads and the farm above water together with his dad and brother. The only thing we have ever argued about is the hours he worked. I was a townie, I never quite understood the pull of the farm for him and I think that pull will always be there. I always wanted him to slow down and do less and I suppose I got my wish, but I would give anything for it not to have been this way.

Chris is a quiet, shy man, extremely kind and loyal and always willing to help others. He is also very stubborn and a little OCD about lots of things in life and is sometimes way too much of a perfectionist. He is sometimes hard to please because of that. I know my untidiness drives him nuts sometimes. He has alway been slightly built and very slim and before MND he was as strong as an ox. He has always had a hearty appetite and has always amazed people at how much food this skinny man could put away. I think a lot of those traits though are helping him cope with this rough deal that life has dealt him. This is just a taste of the man I married.

I still worry about things, the future , practical things, stuff like that. Chris seems to worry about very little, he really does just take life one day at a time. We try to adapt to each new challenge, wheelchairs, trousers with elasticated waists for example, push on handles for cutlery to make then thicker and easier to grip. He gives me that look each time I suggest something that might help him cope better and that tells me he's not keen, but he takes it all on board anyway with very little fuss. All Chris really thinks about is the farm. He misses it like crazy and all he really wants at the moment is to still be able to get out and drive his Nuffield tractor. He still does farm office stuff, but that is never the same.

He laughs when I tell him he is my hero and I know everyone who is fighting this awful disease is a hero too, but Chris is mine. I know he is a long way off the worst that this disease will throw at him and I'm sure there are going to be some very low times for all of us, but he is much braver than I can ever be. I am under no illusion as to how tough the next few years will be and yes I hope there will be a few years more of this man in my  life. I am sure there will be days when it will be tough beyond belief for all of us, especially him. There will many tears and much anger, but I hope there will always be lots of laughter too. 

I don't want this to come across as really cheesy, like we are these amazing people who can cope with anything, because that is really not true. Chris hates what MND is doing to him as do I. It is the most evil of diseases and I wish with all my heart that MND had never touched our lives. I hate it with a vengeance, but it has, so we have to try and deal with it the best way we can, one day at a time....... with just a hint of future planning thrown in by me.

Saturday, 13 September 2014

No 85. MND is with us for life.

I eventually felt more human yesterday. I resorted to caffeine which I don't normally tolerate that well, but a couple of cups of coffee seemed to do the trick. I needed something to help me wake up. I may not always want to, but writing this blog is something I really need to do.

It was the MNDA AGM and conference yesterday and they had a live stream on line, so Chris and I thought we'd watch it. It was only a hour in the morning and a hour in the afternoon. I confess I thought I'd find it boring, but it wasn't at all. It was really interesting seeing who the out going and incoming Chairs were and hearing about the fundraising and finances, which tends to go over my head as I'm not a 'numbers' person, but it was explained really well. I think they said that after expenses were paid they were left with a reserve of around £3,000,000. That really puts the nearly £7,000,000 raised in just over a month by the Ice Bucket Challenges into perspective, that's for sure. They talked about how important it was to to take the time and careful consideration needed, on how they spend that money.

In the afternoon a Doctor, I confess I have forgotten his name, but I think he works in research, gave a talk about MND and he also talked about the possible causes and the study of genetics. It was really fascinating, and he used amazing computer graphics to show DNA and genes at work. A lot of it was hard to grasp, but I think we got the gist of it. They have discovered that something goes wrong in the genes, but they aren't sure why. The environmental factors have never really been properly collated and the MNDA are setting up a register involving all the neurological and specialist units in the UK, to study those kind of things. They explained that this is a mammoth task, but they had to get the foundations right.

Although I wanted a day without MND I knew that was never going to happen, but this was really interesting and hearing what goes on behind the scenes actually made us feel really positive.

Chris has been getting a little bored. He doesn't do a lot out side at the moment, he is waiting for the PEG hole to heal properly as there is always the risk of it getting dirty out on the farm, despite wearing overalls. At the moment the PEG oozing, even though it isn't much now, seems to make his shirts dirty. It seems to be healing OK. I think I read that you shouldn't cover the PEG up with a dressing or anything. 

He popped over to his dad's to check the post and he came back smiling as he always does when he's been outside. My farmer boy needs to be out in the fresh air. I do worry how he will be later on. I think we will always have to make sure he gets out side if he can, even when he is completely reliant on a wheelchair. He is going to go stir crazy else, for so many reasons!

So, the reality is we can't escape MND, so I guess we had better get used to it. MND is with us for life.

No.84. Needing a break.

Not sure I`ll blog everyday. I think I've been repeating myself a bit and to be honest I need to back away from MND a little bit, well as much as I can anyway. It is all consuming at the best of times and I am feeling pretty drained, I guess that comes from watching and dealing with a loved one going through this and none of this compares to what Chris is going  through. We are going on holiday next week, only up country, but it will be our first holiday for well over 10 years and I think we all need a break.

Thursday, 11 September 2014

No. 83. Escaping and contemplating.

It was good to do something different yesterday. We were invited to the Cornish branch of the MND association's luncheon up at Lanhydrock. It was a long haul from here, but it was worth it, the setting was beautiful, the carvery was delicious and it was lovely to meet people who understood what we were going through. The people we spoke to were so kind and supportive and one lady introduced herself as a MND visitor and she will be coming to visit Chris sometime soon. They made us all feel very welcome.

I am getting used to cleaning Chris's PEG now and the pain is easing too for him. It is still oozing, but that is normal I think. Chris 's MND nurse Tracy was at the luncheon and we had a little chat. She is very supportive too, we really feel she has our back.

It is a strange thing this disease, it is horrible beyond belief, but the weirdest side affect is all the wonderful people we have met because of it.

Our girls were talking to each other the other day. Tamara is Chris's step daughter, but he has brought her and my 26 year old son Jordan up since they were tiny and they adore Chris. Her and Chloe were talking about when they marry one day and that they want Chris, to walk them down the aisle. Tam is 24 and going steady, but Chloe is only 19 and is focused on her career and that is how it should be. It dawned on her that Chris might not be around when she meets someone and gets married one day and that made her very sad. I told her that no one knows what the future will bring. We all have to try and take this one day at a time and to always have hope. 

I know Chris has thought about things like that and they are the things that upset him the most, all the futures he will miss out on. I know there is always uncertainty with anyone as to whether we will be around for the big things in our children's lives. With MND though you just know you most likely won't be. Most people only have a life expectancy of 2-5 years on average with MND. 

The Stephen Hawkings of this world can be counted on one hand. He is very much an exception and definitely not the rule far as MND is concerned. There is nothing I can really say to either of our daughters or Jordan in that respect. We all know MND will win one day and take him from us, but like I said to them all. Chris is not dead yet. It is the here and now that matters and whatever the future brings, well we'll deal with it as it comes.

Today we smile together, we laugh together, we hug together and we love each other together and that is what really matters for now.

Wednesday, 10 September 2014

No.82. Always there.

We try very hard to not think about MND, to try and live normally, but as time goes on that is more and more impossible. There are the obvious changes in Chris and the reality of the things he can no longer do, plus everyday there seems to be visits or letters about visits or like yesterday, letters from the DWP about Chris`s PIP application. It seems never ending. I`ve said before that MND is all consuming and it really is.

Chris's letter from the DWP said that he had to have an assessment for PIP. I was sure his MND nurse said he wouldn't need one with a diagnosis of MND. I asked my 'MND' family for advice again and that prompted me to email Chris's neurologist and MND nurse. Fortunately Chris's MND nurse got back to me very quickly and she said all the necessary forms have been sent and that he shouldn't need an assessment and to ring them. I did and a very nice man on the phone went through Chris's records and found that those forms had just arrived, they must have crossed in the post I suppose and that the appointment would be cancelled and the forms would be dealt with within 48hrs, so that is hopefully, one less thing to worry about. I won't fully relax though until it is confirmed in writing.

I've also had to rethink Chris's meal regimes. Chris has always been skinny, but has an appetite of a horse. That's a farmer I guess. He still loves his food, so much so that he has almost spent most of day eating, so determined was he to eat the same amount, eating is so slow now, but since the PEG has gone in we've discovered that he can't eat the volume of food he did before. Too much and it has a way of escaping from around the PEG!! The PEG nurse advised little and often, so we are both getting our head around that. I think the small meals will be easier once the night time feeding starts. Such a lot to adjust to, but I'm sure it will be second nature soon. I have bought him looser, stretchier trousers too, such a shock to Chris, he was never a trackie bottom man.

We had a quite a few laughs yesterday too and Chris isn't so sore so thankfully it didn't hurt him so much!

Later today we are off up to the middle of Cornwall as the Cornwall branch of the MND association are having a lunch get together. It will be nice to meet other people in a similar position, though of course we wish no one had this awful disease. Chloe is coming with us as well as Chris's sister and brother-in-law and his dad. It will be quite a trek for us, but we are quite looking forward to it. It will be nice to get away from home for a while. 

Whatever we do though MND is always there.

Tuesday, 9 September 2014

No.81. A better day.

The physio came to check Chris over today and his breathing tests are still good which is great. I watched the MND video about the EPIOC wheelchairs they have helped develop. Chris doesn't need one yet, but I like to know about things, so the physio's are going to see if the wheelchair people down here supply them, they should do as they are available on the NHS. 

Not long after the physio's left, the district nurse telephoned. She was coming with the lady who used to be the PEG nurse in Helston. Coincidentally, the PEG nurse in North Cornwall is on holiday and the nurse down here is covering for her, so she was able to come too. Chris's MND nurse had given us the number of the nurse in North Cornwall, so probably if I had phoned her we would have been put through to the nurse down here. I got thrown off that track after speaking to our GP. Anyway, we found her at last. She talked me through the cleaning etc, she said the plunging doesn't get done for a month, but showed me how to undo the PEG with a sample one. The nurse told me in hospital that we should turn the PEG everyday, but this nurse told us we shouldn't turn it for two weeks, so I was doing that wrong. They brought a load of syringes as they'd should be changed everyday and plenty of packs of gauze too. We can also contact the district nurse when ever we need her, which was reassuring. When the district nurse came in she knew Chris and he recognised her. When I asked later how he knew her he said he had gone out with her once years ago. What a small world, she was really nice.

I have written a polite letter of complaint to Chris's original gastroenterology consultant, in the hope that they will improve discharge for others. The PEG nurse said that it wasn't uncommon for people to be sent home from Treliske with a PEG and with no proper advice or care leaflets. That needs to change.

It's good to feel more relaxed today, I don't do stress very well.

Monday, 8 September 2014

No 80. And breathe...

Blimey  I was stressed yesterday evening, I think I would have completely lost it if it weren't for my 'MND' family advising me and telling me how things should have been done. I would have been none the wiser. The staff on that ward messed up big time.

To put my mind at rest I decided to dial the 111 service and I asked to speak to an out of hours district nurse. I spoke to a doctor first and he agreed that we shouldn't have been sent home with out information and contact details for a PEG nurse. A District nurse rang me a little while later. I explained things again and she started talking me through the cleaning of the PEG etc. She asked me if I had any gauze or gloves, I said no, all they gave Chris was a syringe and a bottle of sterilised water. I said I had been washing my hands thoroughly and then using an antiseptic wipe as I couldn't find any gauze in the shops. She  said that wasn't ideal as it would probably sting, but to use them till they come out. They will bring out extra syringes, gauze and gloves and then set up a regular order for Chris. I told her about the oozing and she said a small amount is normal, but that it can burn the skin, so Chris may need a barrier cream. She will show me how to undo the white part of the PEG next to the skin and clean it properly and to 'plunge' it, still a bit confused and scared about that bit. People have told me about this, but I still haven't a clue how to do it without being shown.

Apprently there is only one PEG nurse for the whole of Cornwall. She is based in Bude which is two - three hours drive away. There used to be one based in Helston, but she also looked after stroke patients and the work load got too much so they took the PEG work off her. The DN said she is brilliant with PEGS and will try to get her to come and see us if she can. I did feel a little more relaxed after I spoke to her and hopefully there won't be any problems with them turning up today. Chris also has a visit from the physio this morning, so yet another MND themed day.

Despite how it seems Chris and I do have a laugh, though he tells me off if I make him laugh at the moment because it hurts. He was wanting to write his diary yesterday evening and he said he couldn't think what he had done during the day, so I said that he ate his breakfast in the morning, his lunch during the afternoon and his tea during the evening. We both laughed, because that literally was true. He is so determined that he is going to eat what he used to eat, even if it is soft or puréed, but it takes him so long and he really is spending most of his time eating. I'm not sure it's funny or good really, but it did make us laugh. It will be good when he starts his night feeds as that will take the pressure off the eating during the day.

This disease is hard enough without the added stress of those who can't do their jobs properly or lack the necessary knowledge. Without the help of people who are/have been through this, we would have been left high and dry and in the dark. I shall write and complain, have no doubt about that. I hope Chris is glad that he has me in his corner, because he is so laid back he is horizontal and wouldn't dream of complaining about anything. I used to be like that, but it's amazing what our protective instincts bring out.

MND is like a leech, it is sucking the physical life out of Chris and it is trying to suck the mental life out of me, but it won't work because I am not alone. We have wonderfully supportive family and friends, but I really want to thank my 'MND' family, where would we be without you.

No. 79. About to blow!!!

Well today was a day of frustration. Chris`s PEG was oozing around the tube, which may or may not be normal. I contacted Chris`s MND nurse to see if she could help with finding out who the PEG nurse was. Unfortunately she was out  all day and could only find me the number of the East Cornwall nurse. It was around 5.45pm by then and I knew most people wouldn`t be available at that time anyway. I then rang Chris`s GP as there is a huge blister on his epiglottis, which must have come form the endoscopy tube and it is causing him to gag. She prescribed him an antiseptic spray which I collected, but I also asked her about a PEG nurse. She had no idea either, but said that Chris should have been referred on discharge and it would have been on his discharge form, which it wasn`t. He should also have been given leaflets on how to care for the PEG, yet again he wasn`t. She suggested I speak to the referring surgeon`s secretary to complain and get things put in place, which of course I couldn`t do today because they go home at 4pm !!

To say I am annoyed is an understatement. This whole PEG process has been a cock up from start to finish. I can`t seem to find anyone who can help us physically and will have to spend tomorrow trying get hold of the right person who can. Chris is his usual, laid back self, letting me get on with this while I am close to exploding !!

Just when I thought I couldn`t hate this disease anymore than I already f*****g do !!!

I`m swearing , I must be angry !!!

Saturday, 6 September 2014

No.78. Time to rest.

It was good to get Chris home yesterday, he hadn't slept and was tired and uncomfortable . He ate some lunch, but couldn't manage it all. I asked if the nurses had cleaned his PEG or flushed it, but he said no, so we tackled that together. Hope we did it right. I will phone our GP surgery on Monday and see if the district nurse can come out just to make sure. Chris then went to bed aound 2pm, I woke him at 6pm for his tea, but he fell back to sleep and didn't wake up until 8.30pm, I guess he really was tired.

He said his throat was uncomfortable too. It looked sore, I guess that is the endoscopy and the breathing tube's fault. It'll take a day or two to feel better I suppose.

People keep telling me that Chris should have had a PEG nurse assigned prior to his op, he has been sent home with no advice at all, other than to clean it with boiled water. I have messaged his MND nurse Tracey and hope she can help. This hasn't been a good experience all round really.

I have yet to hear anyone with MND say they have had a good experience in hospital yet, which is really bad. I think it is purely down to lack of knowledge about the disease. Maybe be staff should be encouraged to go on training courses, I know they must be available as one of Chris's nieces, who is a physiotherapist, went on a one day course on Friday purely too do with MND. I'm not entirely sure how this can be redressed in this modern, underfunded NHS, maybe the MNDA could help with information sheets/cards, that someone with MND could take in with them if they go into hospital. I've mentioned it to them anyway.

Well it is 8.30 am and Chris is still asleep, for someone who has got up at a 5.30 am for most of his adult life, this is quite the miracle. Chris might not like it, but the enforced rest will do him good.

Friday, 5 September 2014

No.77. Pegged out.

Yesterday was such a long day. We had to get up at 5.30am to get ready to go to the hospital. Chris was seen around 9am. Everyone was apologetic about last week, but there were two sets of everything ready, name bands etc, just shows that the only thing that wasn't ready last week was the  anaesthetist and a bed. Anyway, the op went well, but they still didn't have a bed ready, so he had to wait a couple of hours for a bed to be found on the gastro ward. Luckily they only gave him a really low dose of anaesthetic because of the MND and because the op was so quick, so he wasn't sleepy at all when I saw him. Apparently they put the endoscopy with a light on the end, down the throat, that shines up though the tummy wall and then they put the PEG tube through from the outside where the light hits, X marks the spot, in like a flash!

The nurse said he could have something to eat, but because they didn't know he was coming they didn't have anything prepared, so she brought him a bowl of soup, two scoops of mash with gravy and a bowl of custard. Let's say I was glad I took up some of Chris's Resource milk shakes up with him as he was starving. When I texted him in the evening and asked him what he had for tea he said a bowl of the same soup that he had been given for dinner, that was it. I was not pleased! I think the staff obviously have no idea of the nutritional needs of a MND patient, but I guess they can only deal with what is on offer. It was almost as good as the Deputy Sister in the endoscopy department last week saying 'Oh good, at least you are skinny, we usually have to work on stroke patients and they are usually fat' and that was in the waiting room in front of other patients. Insensitive and rude. MND patients are mainly skinny because of muscle wasting and the energy used just to function. It just shows that we can create all this awareness within the general public, but if the general medical profession aren't taught enough about MND, then the health of those with MND could seriously be threatened if they had to stay in hospital for any length of time. I can only go by this one experience of course. I only hope Chris's experience isn't the norm. I don't think we are ever going to get round the fact that MND is a rare disease and how do you teach medical staff about something that they may never, ever come across? I think this information should be passed on to the wards when MND patients are booked in. Of course it doesn't help that on two occasions now a bed hadn't been booked in the first place for Chris, even when it was requested by his consultant. It's hard to inform the ward then. It's not the nursing staff's fault, the logistics need to be better.

At least Chris will be home today.

Later in the afternoon Chris had a look at his tummy and saw this tube coming out of it, no dressing or anything to hide it away. I think it freaked him out a bit. He got quite emotional and said he hated it, hated MND, and hated having to have the PEG, even though he knew it was the right thing to do. The reality of this disease is s**t.

Chris was so bored too, even his copy of the 'Farmer's Weekly couldn't appease him. He really needs his dose of fresh air. His sister visited him in the evening, at least that passed some time and she gave Chris another of his energy drinks.

I'm glad this is all done now, Chris is sore, but in a few days he will have healed and hopefully accepted it better. The Staff nurse showed us how to flush the tube with water everyday until he starts using the feed pump at night in October, though she admitted she knew little about how to care for a PEG, not very reassuring ( all advice from those experienced with this will be gratefully accepted ). No one knows MND like someone with MND.

Oh I wish this bloody disease would just do one and go away, we don't want you in our life and I just want to bring my farmer boy back home. Thank goodness I am doing just that today.

Thursday, 4 September 2014

No.76. Be angry.

Won`t have time for a blog tomorrow morning, so just a quick catch up this evening.

Chris`s blue badge has turned up, so at least we will be able to park a bit closer to the main hospital tomorrow in a disabled spot. Still waiting for PIP to come through, but they said it could take up to four months, so we must be patient I guess.

Chris has been quite low today, I thought he might be anxious about tomorrow, but he is really missing the farm and being able to do all the things he used to do. I can understand that, he was born a farmer, it is and always will be his life, and there is nothing I can say or do to make this better for him. Farming isn`t a job, it`s a vocation and a lifestyle and for someone who has eaten and breathed it the whole of his life, this is a very bitter pill to swallow.

Someone said I was too polite when I described MND as a hateful disease this morning, he used some more choice words. I too would like to use those words, but I am mindful of who may be reading this, particularly Chris`s family. This disease is a ******* ******* and if I could make it **** off I would, but there is no expletive yet derived that can describe how vile and cruel this disease is and sometimes yes, I want to stand in the middle of one of our fields and scream and shout as loud as I can and call it all the names under the sun. This disease makes all of us touched by it so bloody angry, but I would rather feel anger than sadness, I`ll leave that for the future, as that is where the fight comes from. Chris is fighting this in his own way, he is much calmer and placid than me, but I think he should get angry, this evil disease is taking his life and in reality there is nothing he can do about it. That deserves all of our anger.

I pray that all the funds globally that have been raised by the Ice Bucket Challenges, will help pave the way for a cure one day. NO ONE should have to go through this awful disease EVER !!!

Wednesday, 3 September 2014

No.75. This hateful disease.

Chris`s first symptoms of MND were a limp and dropped foot. Most of his body is affected in some way now, though the part giving the greatest problem is his swallow. When he was referred to have a PEG fitted, he didn`t really need one, but was advised to have it now while he was still well, now he does need it. Things seem to be progressing quicker than we would have hoped.

Chris saw the speech therapist yesterday and she went over a lot of what the dietician said, but she also checked his swallow to make sure that it is still OK for him to eat orally. She said he could still eat with caution, but again advised using the PEG to top up his intake and take the pressure off eating as it is such hard work and because of his choking problems. I do hope things go without a hitch tomorrow, especially as we have to be at the hospital by 8.10am, that means a really early start for us. Chris also went to the GP to have another INR blood test done.

The speech therapist also discussed the speech technology that is available and again told us that the best that is available is on offer in the south west. She has referred Chris now, even though he doesn`t really need it yet. The people have to come down from Devon to assess Chris and they cover a wide area, so there is a long waiting list. It is quite likely that Chris may need it by the time that he is seen, hopefully he won`t , but who knows, that`s the unpredictable nature of this disease. I don't really want to think of the day when he can no longer speak.

As much as you don`t want to look ahead too much with this disease, you also have to, in order to be one step ahead of it. The help available often takes a while to sort, so the professionals have to act before certain symptoms arise. They have to make that judgement call. We decided at the off that Chris wouldn`t fight anything that was offered or advised like the PEG. The care that has been offered by Chris`s MND team has been wonderful and nothing has happened yet to change our minds on that. They have all been amazing.

Today is a breather before Chris's PEG op tomorrow, no appointments for him today. I told him last night that he always appears to be so positive and his words to me were, 'I just hate it, really hate it and what it is doing to my body.' I think that just sums it up really. MND is a hateful disease.

No.74. Simple pleasures.

Chris is off to see the speech therapist today and then after to our GP to have another INR blood test done for his op on Friday.

He went to see the dietician yesterday, we were bombarded with info and some of it was hard for Chris in particular to take in. After we told her about the problems Chris has with eating and choking she suggested using the PEG to supplement his diet. One option was the drip feed overnight. I could see that Chris wasn`t very happy about that, but when it was explained that he could still eat during the day, but that he wouldn`t have to eat so much at a time and could just eat what he fancied, he could see the sense in it. She said for example, that a 500ml bag would be put up overnight. You can`t put pureed food down the PEG as the tube is quite thin, so you have to use the liquid feeds that will be prescribed.

A nurse is going to come from the company who supplies the drip feeder and she will show us how everything works and then we will get advice on how to actually use it. The dietician is going to get this all arranged for when we come back from our holiday in Somerset. We didn`t want to have to worry about all of that until then. It was all a little confusing, I`m sure this will all fall into place eventually, yet another step on this unwanted journey.

The dietician asked Chris if he had anymore questions, I could see he was mulling over something and then he said `I`ve had my last pasty then? ` which was funny and sad at the same time. She said the inside would be OK, but wouldn`t recommend the pastry. Chris`s reply was `Oh.....'. On the way home I asked Chris if he wanted me to get him a small pasty, maybe his last one and I stopped off at the village shop and picked one up for him. I carefully cut off the crusts and cut the pasty up in very small pieces. Chris ate every bit of that pasty, he even nibbled the crust bit, by bit, it took him ages, but I could see that he enjoyed every mouthful. We all felt a little sad that Chris may have had his last pasty. That's quite a big deal to a Cornishman.

This disease takes away the big things of course, but it also steals the simple pleasures in life too. It is so very cruel.

Monday, 1 September 2014

No.75. Transition

Since Chris has found it harder to write I felt it was time to get him computer literate. He knows how to switch the office PC off, but that's about it, so yesterday I gave him some lessons on how to use a word processor and spreadsheets to record all his farm work. He has always been meticulous at keeping a diary. For now he will do both, a gradual transition from paper to computer. Sadly it will be something he will have to know one day, as a computer will be his main way of communication in the future. Thank the Lord for modern technology though.

I find facing all things MND hard sometimes, I want to hide away from it and make it all go away. Then I feel a little guilty as there are so many wonderful people out there raising awareness tirelessly. I find it quite hard to be be brave and proactive at times. There was a very moving and brave video on line about a family where that dad has MND. I didn't show it to Chris, I'm not going to rub his future in his face, it's hard enough for me to contemplate at times, let alone him.

I managed to pay the MND association the money raised at our farm sale yesterday, £230 in total, so that felt good

Well Chris has an appointment with the dietician today. At least I will be able to ask for advise about PEG feeding before Friday. I did phone about the INR blood test too and Chris does have to have another one this week. 

Back to MND ruling our world, but hey! the sun is shining and that's enough to make anyone smile.