Google+ Badge

Thursday, 30 October 2014

No.117. Facing up to myself.

I haven't felt myself for a couple of days. Now I'm not after sympathy or anything, just trying to be honest about how all this is making me feel.

I wrote in my last blog that we had got used to things for now and how life was 'boring' in a good way.
The thing is having a breather from progression etc has allowed thoughts to creep into my head. I have felt muggy, and have had some really weird bad dreams. I haven't felt myself at all.

To digress for a moment.
I cared for my mum who had Alzheimer's a few years ago. I had hoped to care for her till the end, but I hadn't banked on the psychological side of things, plus Chloe was only 11 when mum moved in and she found it hard too, all of us did and there were seven of us including mum living here at the time. Coping with the physical problems was easy compared to the other side. In the end, after two years, I could cope no more with mum's delusions and memory problems and with my sister's support mum went into a care home in the village. She was actually very happy there and it was only when she broke her hip (she was a wanderer) and ended up at the mercy of the NHS/bed blocking etc, that she really went down hill. Seven months later she passed away in a nursing home, a literal shell of her other self. The reason I mention this is that I still carry a lot of guilt about that, even though I know I did the right thing for all of us, a part of me feels I let her down. I also put up a wall around myself, never grieved properly and did what I do best to cope and that was to eat away the pain.

I mentioned this because I suddenly got scared this week, I no longer eat to self medicate and am in fact losing weight with a slimming club, but I still had this barrier up. I dealt with it by writing this blog, planning future things like when we will eventually move into Chris's dad's bungalow in the future. It helped me feel in control of a situation neither of us really have any control of. Anything to stop me actually 'feeling' if I could help it. I'm not sure how, but this week that barrier came down and I suddenly felt very vulnerable. What if I let Chris down? What if I can't look after him properly? How will I cope with out him? I will look after Chris of course, most definitely till the end, but those thoughts scared me. I was starting to feel physically really rough, in the past I would turn to food, but I don't need to do that any more so now I did what I should have done, and I opened up to my darling husband and he listened like he always does and he cuddled me and we talked, a weight was suddenly lifted from my shoulders.

I really need to learn live in the here and now and stop planning for stuff that hasn't happened yet. It just brings the inevitable future into today and neither of us need that. I need to not be such a control freak as well and I also need to forgive myself for past decisions which were made with the best of intentions. I need to stop putting up barriers to protect myself from pain, because to feel pain means we have loved and of that there is no doubt.

I wish to God this bloody awful disease hadn't entered our lives, but it has and we can do nothing about that. I am sure this won't be the last time that I feel like this, but I am going to try and take a leaf out of Chris's book and just take it one day at a time.


Tuesday, 28 October 2014

No.116. Hurray for boring.

If I don't write a blog it means nothing has changed, it means we are getting on with our new normality. I wish it weren't so, but that's the reality of things.

Life was back to the mundane routines yesterday. The physio came to see Chris. His simple lung function tests were fine, though she said his heart rate was a little raised, not sure why that was.

Chris had an appointment come through to see the people who deal with the speech recognition technology and they have to come down from Devon to do the assessment, but it was on the same day as we are going away next week, so we have had to ask for it to be changed. Of all the days for it to be on and it had to be then, so typical. It is quite hard to plan things sometimes with so many appointments all of the time. Chris's sister is treating to us to two nights away next week at a lovely hotel by the sea, it will be sandwiched between a flu jab appointment and a visit to the neurologist. At least we have a breather for the rest of this next week.

Chris is getting used to his night feeds via the enteral pump. I know that the tube needs to be well flushed after to clear the feed residue, but the Y attachment where the syringe attaches seems to get bunged up most days, so needs to be removed, I then find flushing it through with a syringe of hot water under pressure seems to clear it. No way am I going to do that while it is still attached to Chris. I've also been told to make up a pint of warm water with one teaspoon of bicarbonate of soda and flush it though with a syringe of that, I've not actually tried that yet.

It was nice to have our eldest daughter back home form holiday. Sharing her excitement of her tales and seeing her photos was a welcome distraction and a taste of 'normal' normality. I personally need that.

So, another day begins, let's hope it is another boring one, boring can be quite a relief.

Sunday, 26 October 2014

No.115. The fun is back.

My last blog showed the sadder side of this disease, but thankfully at the moment those days don't come too often. 

Today I wanted to go for a walk through the village so I asked Chris to come with me. Of course he couldn't actually walk, but he came with me on his mobility scooter. I said it was like in Rocky and he was my personal trainer following along beside me. OK not quite Rocky, but I'm sure you get the idea. We went a couple of miles and Chris said he enjoyed it. We bumped into some people we knew in the village and it was good for Chris to show his face and get off the farm for a bit.

Now I don't know about Chris fulfilling bucket lists, but I am fulfilling some of mine. When Chris was well I always wanted Chris to just come for a walk with me, but he was always too busy and it never happened, now he has the time forced upon him, so I've sort of got my wish. I'd rather it weren't this way, but at least we are doing things together now. 

Ain't life strange?

The fun and laughter are back for now thank goodness, it doesn't do to dwell on the bad side of MND too much or else it is really winning.

Saturday, 25 October 2014

No. 114. Shifting balance.

I'm pretty good at coping with the practicalities of this disease, helping Chris cope day by day, even planning ahead for all his needs in my mind. I think though it is a distraction for coping with the emotional side of things. Writing this blog is too.

This morning I had to get a bale of hay for our two retired old horses, now I'm a pretty rubbish farmer's wife, I never got the hang of driving tractors etc and Chris always helped with that side of things anyway. I did ask my brother-in-law, but he is pretty busy these days, so I thought I would try and fetch one myself. I got our little sack trolley and ventured off to the hay shed. I managed to pull a bale down, our bales are really heavy. I struggled though to get it onto the trolley and it weighed a ton dragging it to the field. Opening the field gate is tricky anyway, even more so with the bale and trolley. The bale fell on the floor, I ended up struggling in the mud trying to get it back up again, but eventually I made it to the little shed in the paddock.

Now why am I telling you all of this? While I was trying to get this bale of hay to the field I started to cry, partly because of frustration and anger, but partly because I realised how much I depended on Chris for so many things. I always did/do all the decorating, DIY and gardening with Jordan's help, but everything thing else outside the home was down to Chris. Suddenly everything hit me, that I was losing Chris bit by bit and one day it would be forever. Then the tears really started to fall.

I guess in every relationship we have our roles, I still can't bring myself, most of the time anyway, to think of when Chris will no longer be around, but I am already having to learn to be so much more independent of him than I was. The irony of course is that with everything I have to learn to do for myself, there is one more thing he has to depend on me for. That doesn't bother me at all, doing things for him, but I would be lying if I said I didn't miss Chris being able to do the things for me that he used to and I know he does too.

The balance has shifted, we will both adapt of course, but it is yet something else that MND does. It doesn't just steal things from Chris, but it inevitably steals things from me and the children too and eventually it will steal the most precious thing of all, my darling Christopher.

There is not a word strong enough to describe quite how much I hate MND.

Thursday, 23 October 2014

No.112. Pump Info Blog

Some people will know what I am talking about when I mention the enteral pump and some won't so I'll explain a little bit here. Chris had a gastric PEG fitted just over a month ago so that he can be fed other than orally as his swallow deteriorates.

The enteral pump is the device used to get the feed into the stomach via the PEG. The top photo below shows the pump and stand in situ by the bed. At the moment Chris has a 500ml bag of feed during the night which drips in over 7 hours. I have set this bag up and primed it, (that is, pumped the feed through to the end of the Giving set tube) otherwise he would have a tube full of air pumped into him and that wouldn't be comfortable. When Chris is ready to sleep I flush his PEG tube with a syringe full of fresh water and then attach the Giving set to his PEG tube and switch the pump on. An alarm goes off around 6.30am where by I switch off the pump, remove the Giving set from the PEG and then flush the PEG tube through with fresh water to clear any feed that is left in it. It is very easy once you get the hang of it and Chris is getting used to sleeping on his side in a semi upright position rather than lying down. 

The second photo shows the little storage unit we have by the bed. The brown boxes contain the feed which are prescribed and delivered here direct from the company. Fortunately Chris now has a medical exemption certificate for his prescriptions. The top drawer contains the Giving sets as a new one has to be used everyday. These connect the feed bag to the PEG tube. The second drawer contains the enteral syringes for flushing the PEG tube, for putting in any liquid feed via the PEG and for any medication in the future when Chris can no longer swallow. Again a new one has to be used everyday. The third drawer contains the end pieces for the PEG tube where the syringe attaches as these do wear out and they last about 3 weeks or more.

It is amazing how soon this all becomes second nature and shows just how adaptable and accepting us human beings can be when we have no choice.








No. 113. The custard dance.

What on earth is the 'custard dance'? Well, I'm not sure if you've ever seen anyone trying to stand on a large trough of custard, but in order to stop sinking into it you have to keep your feet moving and then you miraculously stay on the surface. This is what it is like for Chris trying to stand upright if he doesn't have something to hold onto. As long as he keeps moving he stays upright, as soon as he stops he loses his balance.

I help him most of the time now to do up his trousers, belt etc and while I am trying to do it Chris's feet won't stop moving, I am saying keep still, but he can't, if he does he will fall, so he does the 'custard dance.' Yes he could and sometimes does sit down, while I help him with these things, but I am just trying to explain what it is like when your core muscles start to weaken because of the motor neurones dying off. He doesn't have the core strength to support his upper body weight so he is more inclined to lose his balance and fall, momentum of movement helps him maintain his balance. I hope that make sense.

He has fallen over a couple of times in the past week too, once at the fashion show, but that is also to do with him being unable to lift his feet high enough sometimes and he just trips up. Chris has ALS which is the type of MND that affects the whole body. His motor neurones are being attacked on all fronts. Whatever type of MND someone has, most all end up the same eventually, being unable to move, talk, swallow or breathe without help. The palliative care nurse came the other day and asked Chris in a round about way, how he feels about reaching that stage one day and Chris just said 'I want to live, I love life'. She seemed a teeny bit surprised at that statement and said people often changed their mind many times about how they will feel, but she doesn't know my husband and I know he wants to fight this demon disease literally until his last breath. Everyone is different though and there is no right and wrong way how to feel about any of this, this is just how Chris feels ...for now.

A neighbour, who owns a classic Jaguar, phoned in the morning and asked Chris if he would like to go out for a drive with him later in the day. Chris said yes and I think he quite enjoyed it. It was good for him to do something different.

I think some people still wonder why I write this blog, why I am so candid and open, apart from my own personal reasons, I just want people to know exactly what MND does to a person, how it changes their lives for ever. How can we expect people to be willing to donate to help find a cure one day and help those living with this disease if we don't talk about it. Chris is not ashamed to have MND, bloody angry yes, but not ashamed. We aren't going to hide away and be embarrassed by it. We have to stand up to this God damn awful disease and we have to shout about it out loud. It's all about spreading MND awareness and this is just our way of doing it.

Wednesday, 22 October 2014

No. 111. Making memories.

IWe had such a lovely day yesterday. The day started with a lovely long phone call from Chloe and then Tamara phoned from her holiday in Spain, it was lovely to hear from both of them. 

Believe it or not we haven't been shopping together down here in years so going to Truro to look around the shops together was a bit of a novelty.

We weren't sure where the best place to park was or how easy it would be to get around with a wheelchair, but parking was fine, just a short walk through the underpass into the town and the shops we went into were perfectly accessible as well. I know we can park in the main street, but there is nothing wrong with my legs and I need the exercise. Chris wanted to have lunch in the William IV pub and we found the disabled access around the back. Inside there was a simple little lift that would just take a wheelchair and a member of staff came to help us with that. There was plenty of room at the table and the food was great, so no complaints there. We got what we wanted shopping wise, and Chris spoilt me somewhat with some nice jewellery. He has bought me jewellery once or twice since we've known each other, but his gifts are usually of a practical level. When we were first going together he bought me a pair of wellies two sizes too big for a birthday pressie ! Luckily for him I saw the funny side and the sentiment. When we were in M&S I thought I'd whizz Chris around the lingerie department for a laugh, he said it was amazing what you could see at eye level when sat in a wheelchair, that was another giggle moment.

Chris was determined to eat a bit of steak that I bought as a treat for our anniversary meal at home and he did manage to eat most of it even if he did have a choking episode. We then had a glass of wine and watched a good DVD in front of the fire. 

Simple things yes, but some lovely memories were made for both of us and we even made a start on that enormous cake our children had made for us.

It isn't easy to forget about the MND as there are constant reminders, but yesterday it certainly took a back seat for once and that is all that mattered.

No. 110. A day to be glad.

Today is our 20th wedding anniversary, a special anniversary for sure, but even more so now. We are going to go off to Truro for the day, it is pretty flat there so should be easy to get around with a wheelchair, hopefully the weather will stay kind. We were going to go out for a meal this evening, but as we are home alone we thought we would just have a nice meal at home with a good bottle of wine, then sit in front of the fire with a DVD. Sometimes the simplest of things are the best.

Jordan and Tracey came over yesterday evening with a great big cake they had made for us, it was from them, Tamara and Karl and Chloe, they had all chipped in. It was so thoughtful of them and it has all the things on it that mean something to us. We were very touched.

Chris's sister Denise has wanted to treat us to some kind of holiday for a while, which was really kind of her, but we said we would be happy with a couple of days away somewhere in Cornwall with a view of the sea and she has booked us two nights at the Headland hotel in Newquay in a beautiful room. I think it will be quite magical. Denise checked it out and they will cater for all of Chris's needs, even buy in a shower seat especially. I know it will be lovely if Denise says it is as I know she only wants the best for her brother. 

We can all find things to be low about in life and yes, some have more reason to be low than others, but there are things we can all be glad about too. Today we are glad that Chris and I are able to celebrate our 20th anniversary together, we are also glad that we have such wonderful children and extended family who care about us so very much........but most of all.....today we are going to smile and be glad to be alive.

This is our day today MND and you most certainly are not invited.

(Someone was asking for the link to our Just Giving page so here it is https://www.justgiving.com/TeamRobertsMND/ )

Monday, 20 October 2014

No. 109. Not what it seems.

Sometime I think we are lucky, not because Chris has MND of course, but because he is still in the early stages. He is still able to get out and about a bit, can still get around the house, just, can still communicate, can still hug me and tell me he loves me, so I feel we should be grateful. At the same time though I can see this disease slowly taking hold.

People who have seen Chris about tell me he looks so well and that he seems to be talking OK. He does look well, when he was MND free he worked all hours God sends doing a physical job, ate like a horse and was close to being classed as under weight. Now he only works 3 or 4 hours a day uses a scooter outside of the house, does no physical hard work and is having extra calories via milk shakes and the PEG feeds and he is now the heaviest he has ever been. It is ironic as most people lose a lot of weight with MND, Chris was skinny to start with and the medical professionals told us how important it was to get his weight up as a buffer for later on. I also think him getting diagnosed early helped too. We caught the weight loss before it took hold.

I keep getting told that Chris's speech sounds OK too. I joke with Chris that people must think I am making it up. Early in the day it isn't too bad and I've noticed that he also makes a point of not talking too much, but if we have long conversations the words just get stuck, I try guessing and then we laugh about it. Late in the evening his speech is much worse, because of tiredness I suppose. I videoed him yesterday evening as his speech was really bad. The pitch had raised and he sounded really drunk. The difference between am and pm is quite dramatic. The video was just for us as a record, something to look back on. We had a giggle about it, but his speech problems are very real in spite of how he may seem.

Of course anyone outside of the family wouldn't know this, why should they? They won't see the choking attacks he has everyday. I say choking, because it is not a cough and a splutter, he genuinely can't breathe at all and sometimes it is quite spontaneous without any obvious cause. This then involves me pushing his head to the ground and slapping his back to try and clear things. It is scary for both of us. People don't see him holding on to walls and furniture as he walks around the house, they don't see him struggling to use his fingers to do up buttons or hold a knife properly. They don't see him struggle to balance because his core muscles are getting weaker, they don't see him attached to a PEG pump all night so he can keep his nutrition levels up. This is our reality of living with this disease.

I've said before that Chris is brave and he is, but part of that is denial, burying his head in the sand, call it what you will. Neither of us are brave when our guard comes down. People will ask him how he is and I'm sure Chris will say he is doing OK, yet really he hates what this disease is doing to him and stealing from him. There are times when we hold each other and cry, but we try not to let those moments in too often. We try not to live in fear of a future that has yet to come.

People lose their lives everyday to dreadful diseases like cancer, but it is the inevitabilty of the MND disease process that scares me, knowing what Chris will have to eventually go through breaks my heart. I hope those worst days are a long way off yet. 

Things are never quite what they seem, that goes for all of us I know, but one thing is for sure, there is no going back from MND, no getting better, no remission, no cure. We could dwell on that, even get angry about it and at times we do, but MND, a terrorist of the body, the enemy, really will have won then. We are trying our best not to waste energy on what the future will most surely bring, but to enjoy the here and now as best we can.

Saturday, 18 October 2014

No. 108. Creeping progression.


I woke early yesterday, not because of the fun evening we had the night before or anything to do with Chris, but because Tam and Karl were up at 4.30am waiting for a taxi, as they were catching a coach up to London to go on holiday to Spain with Karl's parents. I couldn't get back to sleep for wondering if they made the coach OK. Apart from the odd evening a week when Tam and Karl are out DJing, Chris and I have never been home without at least one of the kids here since we married, so it is a little wierd just cooking for two and the house feels a little empty.

Chris has had quite a few choking episodes this week, for various reasons too. He is still managing to eat fairly well with soft food, though he has had to properly give up Weetabix now as that was causing problems every day. He is now trying Ready Brek instead. It is the drinks that are getting more problematic though. It really was good that he got the PEG done when he did. Last night was the first night that he had to have a full 500ml feed. The previous three nights were a weaning in process at 250ml a night. It is timed to go into the PEG over a 7 hour period and you set the pump up accordingly. The feed goes in through the PEG drip by drip. It is important that the PEG tube is flushed with water before the feed starts and when the feed ends to stop any blockages. So far so good.

(On a humorous note, one side effect we have noticed so far from the PEG feed is an increase in Chris farting!!! Not pleasant! When your hubby farts in bed it is rather like making a good pasty, you have to make sure the crimping Is good so there is no leakage, likewise with the bed clothes, best seal the bed clothes in really well or there is no escape!!)

Chris's voice is changing too, not just slurry, but sometimes he goes to speak and nothing comes out or it's like a whisper. We have no idea if that is normal for MND or not, but I guess it is. I tease Chris that he will have to start chucking things at me to get my attention. We try to make light of the things that are happening, it just makes all this a little easier to live with if we can laugh at it sometimes.

His hands are playing up too. I noticed he kept shaking one, he said the fingers were numb, I massaged them a bit and it seemed to help them feel a little more comfortable.

I guess this is the progress we dread, not great big leaps from good to bad, but a slow, creeping deterioration. Blink and you almost miss it, but then you notice something different and think 'When did that happen'.

I wondered today how many people at the fashion show actually knew what MND actually was. I think I missed a trick by not doing more to raise awareness. This is all still so new to us. I should have asked Ursie if I could explain why we were fundraising and how important every penny was and what exactly MND is and what it did to the body. I won't make the same mistake for any other fundraising event we may do. I am getting a little more courageous standing up in front of a crowd, it's amazing how passion and anger can also make us a little braver. This shy little mouse is slowly learning how to roar.

No.107. Fun and fashion.

Well yesterday evening was the MND fashion show which Chris's cousins, Ursie and Jackie, organised. The weather was awful when we left home, it was pouring down and I was really scared it would put people off coming. I know Ursie had ordered 250 pasties and they both had worked so very hard organising it, what if nobody turned up? We needn't have worried.

We got a little lost finding Camborne Rugby club, but thought we had left home in good time so we could get a good parking place, but when we got there the carpark was almost full and I had to drop Chris off first near the building. There were a lot of people already there when we arrived and they just kept pouring in. Chris and I felt a little emotional at the support. There were so many raffle prizes being donated too, it was amazing.

Duncan Warren did the hosting and he did a brilliant job, even though he professed to know nothing
 about fashion, he hosted it with ease. Chris and I had front row seats and I was able to take lots of photos. 

 A young lady entertained us first with some singing, I felt a little sorry for her as everyone was still chatting while she performed which is not unusual at an event like this and Chloe knows what that feels like. We would have loved Chloe to have performed there, but the timing meant she was away at uni. The young lady did a really good job all the same.

The first part of the fashion show was from 'Patch And Acre' which is a country store. I think some young farmers were roped in to do the modelling and some of the lads really had fun with it.

There was an interlude for some more musical entertainment from the same young lady and a lad from Helston YFC, showed off his brilliant, drumming talents. There was also a short sketch from the YFC with their own take on fashion which was hilarious. Pasties were handed out and while all that was going on Ursie and her team had been counting up the money so far. £1400 had been raised at that point and three local banks have said they would match fund up to a certain amount, so that could at least double which is amazing. We would like those funds to come back to Cornwall hopefully. We'll find out in a few days exactly what was raised.

It was then the turn of Ursie's own business ,'Pam's People' to take to the stage. 'Simpson's' men's formal wear had come on board too which meant the young ladies were all escorted by a well dressed man. Chris's brother Kevin enjoyed his role as escort as there were some beautifully dressed young ladies in ball gowns and prom dresses. Chris's niece Debbie also modelled too. There were also wedding dresses modelled and 'mother of the bride' out fits.

I was then called up to the stage with Denise, Chris's sister, as we wanted to present Ursie and Jackie with some lovely flowers as a thank you. I'm not really comfortable being up infront of so many people, I'm not sure any of us were, but it was the very least we could do to say thank you.

All that was left then were the raffles to be drawn, which went on for quite a while as there were so many prizes.

We can definitely say though that everyone had a fantastic evening. Chris and I were thrilled to see so many family and friends there and can't thank Ursie and Jackie enough for organising it. We also were grateful to the willing models, the YFC for taking part, the Rugby club for letting us have the venue for free, to Duncan for hosting it, he had an early start this morning to be on the radio, so we appreciate him giving up his time and thanks also to all those who donated raffle prizes.

Thanks again to those who organised it, those who took part, and those who came to support it and those who donated. It meant so very much to Chris, myself and our family. The money raised will benefit all those in Cornwall who have MND at this time.

There is no doubt a fun evening was had by all.


Thursday, 16 October 2014

No.106. The Cornish MND family.

We went to our first proper MND Cornish branch meeting last night at Carnon Downs. It was so lovely that Christine met us outside and guided us to the function room as it was a very big pub. Chris wanted to walk with his sticks rather than use the wheelchair as it wasn't too far to walk.

There was a good crowd of over 60 who turned up. They are looking for a new chairman as the previous one resigned over differences with head office. From what was said he will be sorely missed and it is always a shame when 'politics' gets in the way of people who have tirelessly volunteered to do the job out of there own free will. Without volunteers where would any charity be?

Janet Eathorne from BBC Radio Cornwall entertained everyone with her funny yarns of bygone days and sung some songs A Capella with her husband Laurel. We then had a pasty and a cup of tea, well we are in Cornwall. They were quite small so I gave mine to Chris, not quite diet fare. He did almost choke a little, but he was determined to get them down as he was so hungry by then. 

So many lovely people came up to us and chatted and said they were there if ever we needed them, they were all so very kind. They reiterated that the Cornish branch was there to help those Cornish with MND in any way they could and that was reassuring. Another part of our MND family.

The second night of pump feeding went fine, though Chris is still sleeping restlessly, hopefully he will get used to it. I turned the alarm volume down, so not quite such a rude awakening this morning.

The next thing now is the fashion show tonight, we are so very grateful to Ursie and Jackie for organising it, fingers crossed it goes well.

The irony of this disease is that we have met so many wonderful people whom we would never have otherwise met. It is a strange old world.

Wednesday, 15 October 2014

No.105. 'I Love Life!'

Yesterday we got back to the reality of MND in our lives again.

Our main cooking source is an Aga, ours is a very old oil conversion and Chris always used to service it, but as it involves a lot of lifting he can no longer do it anymore so we had to get someone in to do it instead. Chris said he didn't really mind watching someone else do it, but I'm not so sure he enjoyed signing the cheque to pay for it!

The enteral feeding nurse popped back after lunch to refresh the training and helped me to set up Chris's first night feed ready for the night. I think the hardest thing for Chris will be sleeping in a semi upright position. I got him one of those wedge shaped pillows to help. The night feed went fine, Chris said he was a little restless sleeping semi upright and the pump alarm does prove to be a very useful alarm clock!!, but that's another first over with. I asked him if he was hungry now and he said yes, now there's a surprise, I'm glad he still has his appetite.

Chris has been choking a little more on his drinks, I think we will have to keep an eye on that one.

I hate how we have gotten used to all of this. MND is our normality now and we really wish it weren't so. I think it is important that we do adapt though, I think human nature makes us, else we would be wallowing in self pity every second of everyday. I think Chris is fortunate that his MND isn't tearing along at breakneck speed, well it doesn't seem to be for now anyway. We have to be thankful for any kind of blessing on that front. It is our 20th wedding anniversary next week and I have told Chris I will be very cross with him if he doesn't make it to our 25th. Joking apart, there are one or two miles stones we would love him to make, that of course would be one, but the main ones would be to reach Chloe's 21st in two years and her graduation from BIMM, we really hope those ones will be achievable. Chris has many reasons to fight to stay alive, we all need something to fight for outside of ourselves. 

MND is nature's most callous thief, it steals so much in the cruelest of ways. You will steal Chris's future MND, you will steal away his physical abilities, but you will not steal Chris's spirit and you most certainly won't steal his fight!!!

In Chris's words."I LOVE LIFE !"

Tuesday, 14 October 2014

No. 104. Life let us be.

Sometimes I don't want to write a blog, sometimes there is nothing new to write about, sometimes I just don't feel like it. Sometimes It's a bit of both. Sometimes I'm just tired.

There's a lull between appointments, it gives us time to breathe and just be 'normal'. A time when MND isn't rubbed in our faces, a time when normal family crisies are a welcome distraction, a time just to live.

Sometimes life just lets us be, so we can laugh and smile and forget this nightmare for just a little while.

For that we are glad.




Sunday, 12 October 2014

No.103. Not dead yet.

We patiently waited yesterday for the radio interview. Chris was quite emotional, not because he has MND, but because he said he had such a wonderful family, to be doing all they have. I told him that everyone loved him, he is not hard to love. The interview actually sounded OK and the only thing I think Duncan edited out, was where Chris got a little tearful near the end of the interview. Hopefully it will encourage one or two more people to come. If you are reading this Duncan, thank you for coming to interview us and for offering to host the fashion show, it means more than you will ever realise to Chris.

I also set up a Just Giving page for Chris where any money raised for the MND association because of him, could be donated. It's https://www.justgiving.com/TeamRobertsMND/ and I also set up a text link to donate, which is to text CROB58 £3 to 70070, so if anyone donates, thanks.

We had some family visit yesterday, Chris's dad gets quite emotional when he sees Chris. He told Chris that he didn't know how Chris coped with having MND. The way we see it is we have two options. We could all go into a deep depression, sit it a corner and give up, believe me that would be quite easy to do if we thought too hard about this or we just take it one day at a time. The human body is an amazing thing in how it adapts to certain things too. If Chris were to wallow too much in self pity then he would be wasting whatever time we have left. Each day has to be lived not mourned. We laugh at this disease when we can, we actually laugh a lot anyway, we always have, it is the natural panacea for any kind of pain. We have our moments of course we do, we cry, we dust ourselves down and we move on. Chris doesn't want to die, he has a lot to live for and he is not going anywhere without one hell of a fight. He's not dead yet and hopefully won't be for a very long time.

The body might fail, but the spirit fights on.

Saturday, 11 October 2014

No.102. What true courage really is.

Duncan Warren visited yesterday and he and Chris had a good catch up about their Barn Club days as Duncan used to be the DJ there. Ursula, Chris's cousin, who is organising the fashion show also came and all three of us contributed a little to the interview. It will be broadcast on BBC Radio Cornwall around 11.30am.

It is weird how this disease affects everyone in a different way, but it is usually when the chest muscles are affected that life expectancy really takes a dip. That is why we are so relieved that Chris's are still OK. I think I read somewhere that involuntary muscles are the last to be affected, but I'm not sure how true that is. The rest of Chris's body has been affected all over, with the fastest progress being with his voice and hands. We always forget that the tongue is a muscle too. I quite often have to ask him to repeat what he is saying now, sometimes his speech will be fairly clear other times much worse. It doesn't seem to frustrate him...not yet anyway.

It really did him good to see Duncan yesterday, remembering good times. Chris and I even first met each other at the Barn Club, though we didn't get together till 15 years later. He got a little melancholy after, but that didn't last, especially when he went out on his beloved farm for a couple of hours.

Chris is so brave, he never complains, though I know his heart is breaking over the future he will miss and he did admit once about worrying about me when he is gone. Mostly though we try to live each day as it comes, but it is hard not to get scared when the reality of MND is in your face every single day.

I think all those who have this awful disease, show us all what true courage really is. It is bad enough watching someone you love go through this let alone to have this hateful disease itself.

Hopefully we will raise a little more MND awareness with this radio interview and it will get a few more bums on seats at the fashion show. Every penny raised is one more step nearer finding a cure one day.

Thursday, 9 October 2014

No.101. Don't spoil tomorrow.

Yesterday was a topsy turvy kind of day. The enteral pump nurse and the MND visitor rang to rearrange appointments, which at least gave us a couple of days breather this week. The enteral pump equipment eventually arrived after the driver got lost, it was hard trying to give to directions to someone who obviously didn't know the area.

Duncan Warren, from BBC Radio Cornwall phoned as he wants to come and interview Chris for his radio show and to promote the fashion show as he is hosting it. Chris is looking forward to that and to meeting him again after many years. It'll hopefully raise some MND awareness too.

Chloe texted her dad in the evening. She was feeling home sick, but I think she just needed to talk to her dad more than anything, it is hard for her dealing with all of this when she is so far away. I think talking to Chris helped them both.

It was also sad today to hear of another MND Warrior whose health is failing. It makes me so cross and upset that anyone has to go through what this awful disease does to the body. It seems to pick on the nice people who also turn out to be some of the bravest. It truly is a cruel disease.

We don't even try to think that far ahead to when those days will be a reality for us, we try and concentrate on the here and now. I like to plan ahead for practical things, but I can do that with detachment. We try to keep the scary, future stuff locked away. No point spoiling today with thoughts of future tomorrow's.

One tomorrow I do want though is the one where they find a cure, we need one so badly.

Wednesday, 8 October 2014

No.102. No progress is good.

Chris and I had a malt whisky last night, we were celebrating. He had a respiratory check up yesterday and his results were the same as last time, as far as his chest muscles are concerned, things have not progressed. It made up for the hanging around for ages. It was a small thing, but worth celebrating we thought. That's the one part of his body that we would like to hold off deteriorating the most.... not being able to breathe, well that seems really scary.

The speech therapist phoned to check up on Chris and she is going to wait for a couple weeks to make an appointment. Phew, that's a relief, no more appointments for a bit please. The pump is supposed to be arriving today, the nurse who does the training will be coming back to do a refresher with us on Friday before Chris starts the feeds at night.

We did have a giggle last night though, at the end of the day Chris's speech gets really slurry, (even without a malt) and the pitch is raised quite a bit too. I kept trying to think who he reminded me of and then it came to me. He sounded like 'Grandad' off of 'Only fools and horses'! We both found that quite funny.  You have to laugh at this damn disease sometimes.




Tuesday, 7 October 2014

No. 101. More appointments.

I've never had so many views on my blog as I did yesterday which was partly due to the MND association sharing it on Facebook and Twitter, so I am very grateful for that. Thanks to everyone who has read it.

Yesterday I was well and truly in 'plonker' mode, which happens quite often I might add. The PEG nurse popped in to see Chris around 3pm, which was fine because his GP appointment wasn't until 4.20pm. When we got to the Health Centre they told me that Chris's appointment was at 14.20pm not 4.20pm, so we were two hours late! My fault of course. Luckily his GP was still there and she agreed to see him then which was lucky. We had to pick up Chris's prescriptions too, which included loads of Resource milk shakes. I usually take a couple of bags to carry them. We were told that the PEG feed would be delivered to our home, but they had dropped them at the surgery, so I had two boxes of those to take too. On the way to the car, one of the bags ripped apart and milk shakes went rolling around the car park. Chris's GP had just come out and she came over to help. I felt such an idiot, but, It was very nice of her to help. One of the receptionists helped to carry out the feed boxes.

It has been Chris's job for years to be the auctioneer at the Church harvest auction. Someone else had to take that on now, but Chris still wanted to go, so I went down with him. They laid on a lovely spread, but Chris ate very little. It's quite obvious now that he is eating far less than he ever used to. I think these night PEG feeds have arrived at right time. Chris used to have one almighty appetite for a skinny bloke, not anymore, thanks for taking that pleasure away from him MND.

We had fun anyway though and I managed to stop Chris bidding for a marrow (a long running joke in our family). I managed to successfully bid for a nice hamper of fruit which was much more up my street. Chris said he didn't mind too much not being the auctioneer anymore and I believed him. He seemed to enjoy himself too.

Today Chris has to see the Respiratory consultant at Treliske. He isn't looking forward to that as the nurse had trouble getting the needle in the artery in his wrist last time and it was quite painful for him. Hopefully the results will be good. They are to check the O2 and CO2 levels in his blood. Breathing problems develop eventually because the muscles around the chest become weaker and the lungs aren't able to get rid of the CO2 properly. Chris doesn't seem to be having any problems there at the moment thankfully.

Yet another day in this MND world of horror.


Sunday, 5 October 2014

No.100. Five months later.

I can't believe this is my 100th blog and I've had over 16,000 views so far. It was something that I started, just to record what was happening to Chris. As weird as it sounds I didn't want to forget a single thing of what was going to happen to him and it is very cathartic for me to write my thoughts down.

It's been 5 months to the day since Chris was diagnosed, 5 months since our world was turned upside down, 5 months since our hearts were broken...... That's all.... 5 months.

Chris was diagnosed on May 5th 2014, my late dad's birthday. We thought that Chris being called in at short notice, for an appointment at 8am on a bank holiday, didn't necessarily bode well.

I started writing these blogs in June. I can't get over how much this bloody awful disease has changed all of our lives. It is horrific, all consuming and relentless. I might have had my suspicions of what might be wrong with Chris before his diagnosis, but I had no idea how our lives would change and how quickly too. Chris first went to the GP in February, so his diagnosis within 3 months was very fast. We didn't really have time to get our head around things, because as soon as we came to terms with Chris's health problems, they progressed a bit more and then we would have to get used to that.

We had no idea there would be so many people involved in the palliative care team that is assigned to look after him either and 'palliative', that term alone is scary, because that reiterates that this is a terminal disease with no treatment or cure. There seems to be constant appointments, some at home, some at hospitals, the physio, dietician and speech therapist, the neurologist, the respiratory doctor, the MND nurse, the palliative care nurse, the PEG nurse, the district nurse, the PEG pump nurse, the Gastro Doctor, the MND visitor and of course Chris's GP.

We know this support is good and Chris is grateful for it, but sometimes it seems that all life consists of is appointments. We have to live our life checking the calendar, just incase someone is coming or we have to go somewhere. At first people told us to have a holiday, to enjoy ourselves a bit, but once MND comes into your life, it is very hard to get away from it. The fact that it is progressive also means that we have no way of knowing what Chris will be like a few months ahead. We have no idea whether his MND is fast progressing or slow, but I would imagine it's somewhere in the middle. They say the average life expectancy for someone with MND is 2-5 years.

In January Chris had a bit of a limp and his hands were playing him up, but otherwise he was farming as normal, well sort of. He did have a couple of falls and I started to worry about him when he was out. I was still nagging him about the hours he worked, I was still trying to paint for a living, albeit not very successfully, but it was something to do in the evening while Chris was working. Now we spend a lot of time together, which was what I always wanted, but not this way. I was always trying to get Chris to think about retiring one day and I think he was coming round to the idea, but now him reaching retirement age is probably not going to happen, not the way his MND is progressing. I'd give anything for things to be the way they were again, Chris working all hours, me nagging him to rest, at least that would mean that he didn't have MND.

The thing I have learnt though, is that Chris is happiest here on the farm. If he can get out for a couple of hours a day on his scooter, then he is happy. Going away made him miserable because he couldn't drive and I had to push him everywhere in the wheelchair, he lost his independence. I think we'll opt for the odd day out or a weekend up to see Chloe, (on the coach next time though) rather than plan a holiday again. I can't bare to see him sad.

So now this is it, this is our life. I'm not sure I will ever come to terms with the fact that Chris has this awful disease and that it will take him from me. All we have really is hope, hope that it won't take him too soon, hope that he'll make it to Chloe' graduation in two years, hope that everything he will need for his care he will get, hope that his suffering won't be too great and hope most of all that a cure will be found one day and that no one will ever have to suffer this awful disease ever again.

MND, we did not invite you into our lives, be prepared to be hated and be prepared to fight as you aren't taking Chris without one!


No.99. Another day with MND

I forgot to say that Chris's PIP application has been accepted, so that is one less thing to worry about. I shall get on and claim Carer's allowance now.

Chris knows a DJ on BBC Radio Cornwall called Duncan Warren. They got to know each other when Duncan was a DJ at The Barn Club in Penzance many years ago. He is going to compare the fashion show that is being held by two of Chris's cousins to raise money for MND and he would like to interview Chris on the radio. It will be great publicity for the show, plus raise loads of MND awareness too. I might see if I can get someone from the local branch of the MND to support him during the interview as he is worried his voice will run out of steam.

Chris seems to have lost his appetite lately. He went out for a couple of hours yesterday afternoon and came in for tea feeling quite hungry, but he struggled to eat it. I think the effort of eating is just too much sometimes. Just as the PEG being fitted came at the right time, then so will the the pump and night feeds, which will arrive on Wednesday. I'm a bit scared of using the pump correctly and Chris is a bit wary of sleeping with it working, but I guess, like the PEG, it will soon become part of his normal daily life.

I hate how MND infiltrates and consumes everything.

Saturday, 4 October 2014

No 98. MND changes all our lives.

We arrived home late last night after saying goodbye to Chloe in the morning, visiting my friend Debbie in Eastbourne and then leaving her house at 2pm. We arrived home just before 11pm. 

This journey consisted of the Sat Nav crashing as soon as we left the car park in Brighton, sending me into a panic as I had no idea where we were going. I passed an unloading place just past the Old Steine so pulled in and reset the darn thing, then we passed a body on the side of the road covered in a blanket with the police all around, that was a bit shocking and we felt sad for whoever it was. I then partly drove the wrong way up a road after geting confused about a contra flow change in Brighton. In Eastbourne I had to drive around twice to find Debbie's house. Setting up the Sat Nav to come home, I didn't check the route, only to find once we had started that  it had directed us to the A303, which involved going via the M23, M25 and M3 which were moving at a snails pace all the way. I think it took nearly 4 hours to get onto the A303!!!, so all in all, not the best first attempt at driving all the way home on my part. I just about managed to get us here in one piece. At least it took our minds off missing Chloe for a bit.

What does all this have to do with MND? Well I have driven since I was 18, but I have always been a reluctant driver. I'm fine with familiar territory, but I hate going somewhere new. Chris on the other hand loved driving, so it was always his job to take us somewhere new or do long distance. He was always so calm and never has he suffered from 'road rage'. So now, because of MND, the roles are reversed and neither of us like it. MND has changed all of our lives.

Chris was so tired when we got home yesterday and he seemed so sad too. He is hating what this disease is doing to him. When he is really tired the pitch of his voice changes too and it is more husky. It breaks my heart to see Chris desperately trying to do things as normal, but finding it so hard and tiring. Most people don't see all of this, he does his best not to give in in front of others, but we, his family, know different.

Yes MND changes all our lives, but nothing compares to how it has changed my darling husband's life.

Thursday, 2 October 2014

No.97. Turn the clock back please.

This time last year we had brought Chloe up to start her first year at BIMM, Chris carried all her belongings up four flights of steep stairs, this year he had to sit in the car and wait while Chloe, I and one of her friends who came to help, did it. What a difference a year makes. I'm kind of scared to wonder how Chris will be for the start of Chloe's third year next September. I can't believe he only started getting the first obvious symptoms in January. How life has changed for all of us. I just want it back the way it was. I want Chris well again.

I have to learn to be not so protective too. My urge to care for Chris can sometimes over ride his need to be independent and he is too nice to tell me otherwise sometimes. I was the same with the kids, it's hard sometimes to not be that way. On the other hand Chris tends to bury his head in the sand about his MND, so we both need to find a happy medium.

I can't say I enjoyed pushing Chris around Brighton today, so many hills, so many paths not quite geared up for wheelchairs, lifts not working in a couple of places, it certainly opens yours eyes up to the problems wheelchair users can have when you have to use one.

Of course I felt I absolutely deserved an amazing Ferrero Rocher ice cream sundae along with Chris and Chloe after all that. Not quite diet fare, but it was gorgeous. It was in a fantastic new Italian ice cream parlour that has opened up in Brighton. We did so much walking and as I write Chris and Chloe are both dozing on the bed. We are all a little 'cream crackered'!

Tam phoned as two people had phoned her about Chris. One was someone wanting to know if they could deliver the PEG pump and feed next Tuesday and another from a nurse,Tam said, who didn't normally come down to our end of Cornwall, but was coming down and would like to see Chris. I can only think it is the regular PEG nurse. Tam is going to phone them back and confirm. 

We can't get away from things even when we are away. Next week is filled with a Dr's appointment, PEG nurse appointment and a trip to Treliske for Chris to have a respiratory check up plus the pump stuff will be delivered. I think the nurse who did the the pump training is phoning to come back and go over things again. It's great of course to have all this support, but sometimes we think, 'Just give us a break please.' This bloody disease is all consuming. TURN THE CLOCK BACK PLEASE !! And make this all go away.

Wednesday, 1 October 2014

No 96. Brighton

It was was good to arrive in Brighton after 8hrs on the road. I drove from Oakhampton (Chloe had driven till then) and only had one break, so was quite proud of myself even if I did find it quite stressful. The traffic was heavy at times, but luckily we had no mishaps. 

On the way up we had a phone call from the Travel Lodge to say that the disabled rooms had been taken out of service due to maintenance issues and would we like to stay in one further away, I said no, that we had to stay there so we ended up in a normal room after all. The staff were very apologetic, but I was rather annoyed as I booked early so that Chris could use the shower properly in a disabled room. He can't stand up in the shower any more. It is only two nights though, so I think he will survive. Goodness knows what the problem is. 

Chloe had a meal with us and then we walked back to her bedsit with her. I do love Brighton, it is so vibrant and alive. Chloe's new room mate in the next room on her floor is also going to BIMM and he seems a really nice lad. I think they will get on really well. He has wonderful green hair !!

We picked Chris up some whisky and went back to our room. We will spend the day with Chloe tomorrow, she is so thrilled to be up here again.

I checked in with home and Tam said someone phoned and said Chris's independence allowance had been approved, so hopefully that means his PIP and if so that is brilliant. The MNDA are also finding out from Cornwall as to why they won't fund the neuro chairs, so overall, it has been a pretty positive day.