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.

No. 127. Tears and gratitude.

On Saturday Chris's sister Lucille came to visit with her son and grandson. It was lovely for Chris to catch up with them as he hadn't seen them for a while. He was a bit emotional after they left and when I asked why he said it made him think about grandchildren and how he probably wouldn't meet his own and I told him that no one really has that guarantee, especially with Chloe as we didn't have her until our late 30's and that he should concentrate on the things he has, not the things he doesn't. It's tough though...not to dwell sometimes.

Yesterday the physio came for Chris's monthly check up. She agreed with his MND nurse that a seat/ walker would be a good idea for indoors. Chris lost his balance while stroking our dog last night and ended up on his bum ! We had a giggle about it, but I fear he is going to hurt himself one day. The walker will help him keep his balance.

Today Chris had an appointment with the speech therapist to check his swallow, so we collected the seat/walker at the same time. The team also came down from The Dame Hannah Rogers Trust in Devon to demonstrate and assess Chris for speech technology. They showed Chris how to use the Tobi i to communicate, go on line, text etc and how it is all converted to speech. It can be controled with his fingers, with a metal dot above his nose and a camera or with his eyes alone, eye gaze. Chris still isn't very computer literate, but he picked things up fairly quickly. The eye gaze takes practice, they had some simple games for him to play on and after calibrating his eyes to the tablet he was away. Writing text will take a little more time. You can get a 12" tablet or a much larger tablet type of PC. The team will come and see him again after Christmas to set him up with a Tobi i which he can use with his hands for now. It will even be able to work his Sky remote, which he is finding more difficult to use now. They will upgrade to the eye gaze as and when he needs it. 

As Chris has a MS Surface tablet already, they said he can download a free 60 day trial of the Sensory software in order to practice using the actual screen, icons etc, so that when he gets to use the Tobi i properly, the software will be familiar to him. The technology available is amazing and sadly not everywhere in the country have access to it yet. We are grateful to be in the area that NHS England chose to pilot this technology first.

The MNDA are campaigning with the run up to the general election next May, for those with MND not to die without a voice. Thankfully when Chris does eventually lose his voice he will be able to communicate still with the aid of modern technology.

So inspite, of the tears this disease inevitably brings, there is the gratitude too for the help that is available in this modern world. It must have been very lonely and isolating to have had MND years ago.

No 126. No cease fire.

What a strange thing the body is, when it decides to rage war on itself, with no known provocation and no chance of a cease fire.

We take it for granted that we can walk, move, use our hands, swallow, talk and breathe, but everyone of these things depends on our muscles working efficiently.

Chris was noticing the wasting in his leg muscles and he showed me his calves. At first glance they don't look out of the ordinary, but there is no tension in the muscle, just flab. If I flex my foot then my calf muscles become tight, Chris can't really flex his feet anymore anyway and no matter what he does, there is no tightness in the muscle. It is amazing really that he can still walk, though that is getting more difficult. He is finding it harder to get up off the sofa and maybe that is why.

There are many diseases that attack the body, but with many others there is always a chance that it can be beaten, not with MND, the progression is relentless and for now it will win the war and it will take no prisoners. 

There are many clever people around the world who have being trying for years to find a weapon to fight back, to halt this disease in it's tracks, but it is hard to find a cure when you don't know the cause. They are beginning to think it is a genetic thing and have discovered there is some mathematical equation where it takes six things to trigger MND. The only problem is no one knows what those six things are.

This is why research is so important and that can only be done with money. At the moment it is like having a sword fight with a feather, you wouldn't stand a chance against cold steel, but hopefully that feather will one day turn to metal and then everyone with MND will be able to fight back.

No. 125. One day at a time.

On Monday Chris had a dental check up. We thought it would be the last time he would go to our dentist as they are up a flight of stairs with no disabled access. We had to go private when we first married in order to get the children in under the NHS, getting an NHS dentist in Cornwall is a nightmare, anyway, the hygienist said that they have a domicillary service and can come home to check his teeth and if he ever needed treatment then they would get him into a surgery with disabled access, so that was good. It was way too much for Chris walking the short distance and then having to climb the stairs.

The palliative care nurse came to see Chris yesterday and she is very good at getting Chris to open up. He is fedup, angry and scared, which is perfectly understandable. He doesn't want to think about the future and what it holds for him and that's fine if that is how he copes, God knows dealing with things day by day is bad enough, he doesn't need to look forward farther than tomorrow if he doesn't need to. I don't know how anyone coping with this disease deals with it really, it is bad enough watching it happen, let alone living with it.

I hate this disease and what it has done to us, but we are doing our best to deal with it one day at a time. We have booked a trip to the theatre in January to see 'Saturday Night Fever', the Hall for Cornwall has good disabled access so we have something good to look forward to in the new year. Planning to make good memories, that's what we will concentrate on while we can.