No.135. "Just a little bit of MND".

 Well Christmas Day and Boxing Day were both good. Chloe and I went to Midnight mass with Chris, I confess Chloe and I went reluctantly, but it was actually really nice and it wasn't too cold in the church either. At least we don't have to go far. 

Christmas Day was lovely with Chloe, Tamara and Karl and Jordan and Tracey all being here with us. I think Chris really enjoyed his brother being here with us too. The dinner went well. I made a salmon mousse for starters which Chris was able to eat and then puréed each part of the roast separately like the veggies and the turkey etc so that Chris could at least enjoy the different flavours. He really did too and even managed some pud all mashed up with custard and cream. I was so worried that he would feel left out while we all stuffed our faces, but he didn't and that was all I wanted. We all had a lot of fun too and had lots of laughs. It was really nice and some more memories were made to put in the bank.

Friday was a chill out day, Saturday was back to party preparations again as we had a large family party on Sunday. It was a lovely evening spent with my sister and her family and Karl's family too who had come down to Cornwall for Christmas, we have met his mum and dad before, but we had never met his Auntie and Uncle and their young daughters.

Before we all started eating Chris and I were having a nice chat with Karl's Auntie and Uncle and I just mentioned that I would get Chris sorted with something to eat first before every one else started and they said 'OK' and disappeared really fast. I thought it a little odd, but then got on with finding foods from the buffet that Chris could eat. Later. on it suddenly crossed my mind that they may have thought that I was going to feed Chris via his PEG infront of them, which wasn't the case. Apologies to them if we made them feel uncomfortable, but we did have a little giggle about it to ourselves later. 

As it is difficult for Chris to get up and mingle and because he eats so slowly, he sat in the same place at the table all evening. I made a point of not leaving him for long. Occasionally he joined in with the conversations, but mostly he sat quietly eating. I asked him later if he felt like he was being left out or felt uncomfortable. He said he did a little, but understood why people found it awkward to talk to him as his speech is slurry and slow. He is a little on the shy side anyway which doesn't help either. He said he didn't mind. I am beginning to understand how difficult it is must be for those who have completely lost their voice.

We did all have a wonderful evening though including Chris and we laughed an awful lot too. More lovely memories made.

At other times Chris had still been a little low, but that was rectified once he was able to get back outside for a couple of hours again. I am still amazed how mostly he stays cheerful. I told him if the roles were reversed I would be moaning like mad. He just looked at me, laughed and said "It's just a little bit of MND". He was being very much 'tongue in cheek' of course, but that is how he deals with it. 

I am in awe of how he does deal with this awful thief that is MND, the stealer of my brave Christopher's body, but it hasn't yet laid it's hands on his cheerfulness and spirit. 

I hope it never does.

No. 134. One day at a time.

These past couple of weeks have been a reality check for both of us really. Of course the progression with MND has been happening, but it was slow enough for it to become the norm. Just lately though it seems to have caught up with us and the reality that this is actually going to shorten Chris`s life considerably, has hit home.

Chris has been feeling low, mainly at the frustration of it all, at not being able to do the things he used too, of the effort it takes to move around, the fact that he doesn`t enjoy his meals anymore, or have much of an appetite. These things have all built up inside.

We went to church yesterday morning to take part in the Nine Lessons and Carols. Chris`s brother Kevin, myself and Chloe, were asked to read the Shepherds lesson. It is sort of a family tradition, with Chris or his dad always reading that part before. Chris`s speech being affected by the MND makes it hard for him to do things like that now. Chloe also sang solo in some verses of a couple of carols. Hearing Chloe sing actually reduced Chris to tears and I knew it was just more than fatherly pride. He told me later that he suddenly thought that he might not be here next year to watch her sing at the carol service again and I must confess I momentarily thought that too. We both have to put those kind of thoughts out of our minds though, or this disease will really drag us down. I think it also hit home that this will probably be the last Christmas in this house, the house that Chris was born in and lived in all his life. We will most likely be moving into a bungalow on the farm in the spring. We are fortunate to have that opportunity as it will be more practical. Climbing the stairs is becoming harder and harder for him, but it will be really tough for Chris to leave his home, even though he knows it will be for the best.

Later in the day though we had family around, including Chris`s dad, as it was his 93rd birthday. We all had a wonderful time with plenty of eating, drinking and merriment and it perked Chris up no end.

This morning Jordan spent some much needed time with Chris and Jordan drove his dad around to drop off pressies to various friends. It was really good for them to spend some time together. Chris may be Jordan`s step dad, but he has brought both Tam and Jordan up as his own since they were very little and they both love him very much. Chris certainly seemed more cheerful when he got back.

Chris is very good at putting on the brave face, even to me, but deep down he is feeling it, who wouldn`t? We are going to do our very best to have a lovely Christmas day though and Chris`s brother will be joining us too, so I hope there will be lots more laughter.

Who knows what the new year will bring. I just hope we can keep one step ahead of the practical stuff while still living one day at a time.

No.133. Needing distractions.

It has been a tough week for Chris, I think things are getting him down a little. The progression hadn't made much difference before, but recently it is more obvious to him and us. 

He fell again and the choking happens to him even when he has puréed food. I am afraid to leave him when he is eating. He longs to get out for an hour or two, but getting 'dressed' up in his overalls etc is such an effort. I am glad he can still just manage to get out for now though.

I can't bare it watching him go through all of this, it breaks my heart. It breaks all of our hearts. Jordan, Tamara and Chloe feel it too. We feel so helpless. We can care, we can help, but it doesn't make it go away. 

I hope Christmas will be a much needed distraction. We have a family get together here over the weekend for Chris's dad's 93rd birthday and then Jordan and his wife Tracey, Tamara and her boyfriend Karl and Chloe will spend Christmas Day together with us. I am dreading the Christmas dinner in a way, with Chris watching the rest of us eat the usual Christmas fayre, it will seem so cruel, but I am going to do my best to make that puree taste good and I am also determined we will have some fun too.

I try really hard not to look too far ahead, but I do get a llttle scared of what the next few months will bring sometimes.

The people are coming from the Dame Hannah Trust on January 7th to set up Chris's speech computer and eye gaze I think. He will be able to control the TV and Sky box from it and text from it too. The fact he has access to such amazing technology is brilliant, but it hits home that this progression and this disease is so very real. Ignoring it is proving to be very hard.

No.132. A poem instead

Forgive a poem today, not my forte, but it just came to mind.

A poem

Fear that creeps throughout the night,

Ever twitching, burning bright.

Stealing moments new and past,

Stealing your life way too fast.

Everyday those muscles weaken,

Prompting thoughts that can't be spoken.

Callous, creeping, with no respite,

Taking motion, sparing your fight.

Life's small pleasures slowly drain,

Hope you'll always speak my name.

Yet still fighting, ever hoping,

Fighting sadness, never moping.

Grabbing moments, seize the day,

Taking your life, make it pay.

Take the pain, take the piitty, 

Make it smile, make it witty.

Showing strength you never knew,

Starting each day as anew.

You my rock, my hero, my all,

I will catch you when you fall.

With this evil slowly tightening,

I will never leave you wanting.

And when your fight is finally gone, 

I'll stay sure and I'll stay strong. 

So MND you think you've won,

Taking lives left undone.

Taking loved ones ripe for slaughter,

Leave them weakened, let them faulter.

You will be beaten, your time will come,

The war will be over, it will be won.

And we will shout and laugh and scream,

This is our hope, this is our dream.

No.132. Soup with everything.

As stupid as it may seem, especially knowing what there is to come, I find Chris not being able to eat properly the most upsetting thing so far. Anyone who knows Chris will know his appetite belied his size. He ate for three people, fried breakfast every day, plus cereal and toast for example. He worked hard and ate accordingly. 

Since diagnosis in May his voice along with his swallow have deteriorated and since his last really bad choking episode I now puree all of his main meals. He has whatever we have, but just puréed. Now puréed food doesn't look that appetising, so I tell Chris to think of his meals as thick soups, today he had roast chicken 'soup', including roasties, stuffing, veg, gravy, the lot. Him being a sweetheart, after I asked him how it tasted and I do taste them first myself to make sure they are ok, he just smiled and said 'I'll get used to it'. I don't want him to get used to it, I want him to be back the way he was. 

He can still eat sandwiches with soggy fillings and the crusts cut off, malt loaf, smooth yoghurt, ice cream, Readybrek, oh and yes Mars Bars. He still has choking episodes, even with the puree, but nowhere near as bad. I sometimes think meals are more of a chore for him now than a pleasurable experience. MND is cruel in so many ways. 

At times now I find myself not understanding what Chris is saying too. The people are coming back in the new year to set up the Tobi i PC and software which will help him to talk in the future. Hopefully he will have got the hang of it by the time he eventually loses his voice, which is sadly inevitable.

Now though we are looking forward to Christmas and family celebrations. Chris may not be able to eat his Christmas dinner the way he used to, but he will have it, just in a different way. We will have lots of fun though and try and forget about this bloody awful disease for a while.

He apologised the other day for being a nuisance, Chris could never be that. I will gladly do whatever is necessary to make his life as happy and comfortable as it can be. I know if the roles were reversed, he would do the same.

It hasn't yet taken his lovely smile and sense of humour or his fortitude against this fearful thing called MND. How I wish we could turn the clock back, but we can't, so all we can do is make the most of everyday and hope that the future will bring a cure.

No.131. Chills are multiplying.

Chris has had a couple of low days this week although he is pretty good at getting his mood back up again. The MND is progressing and Chris is starting to really notice it now. Getting around, especially at the end of the day, is getting harder for him and his speech is deteriorating a bit more. These things, coupled with the choking problems, are starting to get him down a bit and he says he hates it so much. I could get way more vocal than that about this bloody awful disease, but there are no words yet created that could fully describe how I feel about MND. I think the main reason he is feeling a little low though is because he is going a bit stir crazy because he hasn't been able to get out on some days as the weather has been so awful. That part is really tough for a farmer who's life was so involved with being outside and working all hours and in all weathers.

When he has gone out his legs get really chilled. From the knees down they are like blocks of ice. While we were watching the TV I wrapped his lower legs in a fleece and then I put them on my lap and hugged them for an hour, but they were still cold. Is that to do with the MND? I suppose it is. I think he needs to wear his thermal underwear and fleecy jogging pants rather than jeans when he goes out. I'm pretty sure riding around on a mobility scooter is not really good for keeping the legs warm. Wasting muscles and lack of use probably adds to that.

I am starting to feel sad for Chris because the rest of us will be able to enjoy our Christmas dinner, but his meal won't be the same. He says he doesn't mind as he doesn't fancy food as much as he used to, but I will still feel bad for him. I am trying to think of ways to adapt the traditional dinner other than just pureeing the whole lot. Maybe I can just puree the turkey with gravy and mash the veggies separate? We'll see.

On a happier note, Chloe will be home on Friday night and we cannot wait. It will be wonderful to have her home for Christmas and have all the family back together again. MND is not ever going to stop that happening and the one thing it can't steal is the love we all have for each other.

The chills might be multiplying in Chris's body, but his fiery spirit is still burning bright.

No. 130. One minute grateful, one minute scared.

Feeling grateful.

I thank the Lord everyday for Chris's sense of humour and long may it last.

After working outside for a couple of hours the other day, he came in so tired that he couldn't stop yawning. Later I watched him try and get up off the sofa. I asked him if he needed help and he said no and then he put so much effort into actually rising that he left himself standing in a skiing position unable to move, we both looked at each other and just laughed. I helped him to straighten up and then he fumbled his way around by holding on to the sofa and then me, he was still smiling and laughing. He then spoke to me and did his best, unintentional, 'Grandad from "Only fools and horses"' impression and we laughed again. If MND could be cured by laughter and good spirits then Chris would most definitely be onto a winner.............If only.

Feeling scared.
I wote the above a few days ago. Since the above episode Chris has been a lot more tired, unbalanced and his speech is more slurry. When he went out onto the farm on Thursday he did some jobs he probably shouldn't have done and he got quite cold. It really took it out of him. I think he is starting to acknowledge that this disease is limiting what he is able to do and he is slowly getting his head out of the sand. He admitted that it makes him feel really miserable at times, which is perfectly understandable.

We volunteered to help out at the church Christmas bazaar on Saturday, we did a small stall together, Chris took his walker/seat so he could sit down comfortably. It was nice for him to catch up with people he hasn't seen for a while, even if it was obvious some people felt a little awkward and I suppose that is normal. I think Chris always feels a little embarrassed in these kinds of social situations. It also hit home I think, how this time last year, apart from a slight limp, all seemed normal. He was really tired during the evening, but he fancied a Mars Bar later which he really enjoyed and it went down easily.

We are trying to make this Christmas really special and I hope there will be many more, but just lately I have found myself getting a little scared. Sometimes I think Chris's MND is progressing quite slowly, then I see a little more progression and it scares me. It is the unknown with this disease, plus the inevitability about it. Chris still takes the Riluzole, which is supposed to slow things down by about three months, I'm not entirely sure it has made that much difference, but I guess we will never really know. 

I hate this awful disease, a cure may not be found in time for Chris , but I pray that one will be found in the not too distant future for others.

No.129. Live to eat, eat to live.

As I`ve written before, Chris was a man who loved his food, though you`d never know it to look at him. He was always skinny, he only weighed 9 1/2st when we got married and had reached the lofty weight of 10 1/2st pre MND. At diagnosis we were told he needed to gain weight to give him for a buffer for later on so I set about feeding him up on every kind of high fat food and he successfully gained another 7lb.

 Before MND, in his words, he worked hard and lived to eat.

As the MND progresses we are grateful that we listened to the advice given and that Chris had a gastric PEG fitted within 4 months of his diagnosis. I think if he hadn`t he would be heading towards weight loss now. During the past couple of months the choking and problems with swallow have definitely progressed, but along with that has come a loss of appetite. That could be because he is pretty physically inactive now compared to before, it could be because so many of the foods he used to love he can no longer eat, mash potato can get pretty boring after a while, no matter how I dress it up, the same with soups. He has gone off cheese which he used to love too. Every day is a test of our imaginations to think of tasty foods that are easy for him to swallow.

Chris was always a hearty three meals a day man, he had a fried breakfast everyday, but he never ate between meals. It is hard for him to get his head around eating in between meals, he has always been a man of habit. He gets 500 calories over night now in his PEG feed and he can have up to two milkshakes a day at 300 calories each, all fortified with protein,vitamins and minerals, so it takes the pressure off eating three meals a day. The trouble is he feels he has to and although most of the time he does still get some enjoyment from eating, I can sometimes see him forcing down his meals. The dietician said he can have more supplementation via the PEG as time goes on and I am slowly convincing him that he can actually eat what he fancies, rather than what he needs and he has asked me to get him some chocolate for starters and some different ice creams too.

There is emphasis, quite rightly, about losing the voice with MND, but this can also be coupled with not being able to eat, because of the difficulty in swallowing and the risk of choking. There are many things that sadden me about this disease and I am sure there will be many more to come, but it really makes me sad that Chris can no longer enjoy food like he used too. This is a man who could eat for three let alone two. It is one of the more unkind elements of MND.

In spite of this he still keeps his spirits up and I am grateful for that at least.

MND is one bloody cruel disease, slowly stealing the life of those we love, bit by bit, relentlessly and without reprieve.

No.128. Contradictions.

It's been almost 7 months since Chris was diagnosed with MND. One more day away from that awful date, one day more on this hellish journey for Chris.

Life is a contradiction.

I find myself wanting to withdraw more and more from this MND world. I find it difficult when I read stories of people who have lost loved ones and I find myself going into shut down mode as a form of self protection. I have no problem whatsoever talking about MND or talking to others in a similar position, but sometimes I'm just not wanting to face others pain because it is a little like looking at my future self and sometimes that is just too much to bare. At the same time of course I feel the deepest sympathy for anyone going or having gone through this too. I hope my self protection doesn't make me seem too selfish. It's just something I do when life gets too painful. I try to distract myself instead by painting, or listening to my favourite artists or by driving others nuts promoting Chloe's music, anything other than thinking about MND 24/7.

We may try to pretend this isn't happening, but we face it everyday and I hate how this has all become so normal. I hate that Chris's choking episodes have become part of everyday life, I hate, in a wierd way, that we don't panic about it anymore but just deal with it. I hate that it is happening more and sometimes just from a build up of saliva in his mouth. I hate that Chris having to use walking aids and a wheelchair is second nature now, I hate that this once fit and active man sometimes has to feel his way round the house as if he were in the dark. I hate how Chris can no longer eat many of the foods he loves. I hate how it is just normal now to attach him to an enteral pump for an overnight feed to keep up his nutrition. I hate how our early morning alarm call is now the pump alarm telling us it is empty and needs to be flushed. I hate how we have gotten used to all of this.

Inspite of all this hate for things beyond our control, there is is also a lot of love. Love for each other and love for our family. I love the time we spend together now, whereas before Chris was always working. I love that Chris can still get out on the farm everyday for a few hours, except in the rain, and still do some of the things he used to do. I love that someone gave him an old mobility scooter and that on the farm at least, he still has some independence. I love how Chris can still smile and be happy inspite of it all. I love that he is the balance in our life.

So life truly is a contradiction. The time will come in the future when I will be able to face things and fight back and fight for others, for now we live for us, one day at a time, even I, this control freak who always needs to plan, is learning to take life one day at a time.