Google+ Badge

Friday, 26 December 2014

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.

Monday, 22 December 2014

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.

Thursday, 18 December 2014

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.

Tuesday, 16 December 2014

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.










Sunday, 14 December 2014

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.

Tuesday, 9 December 2014

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.


Sunday, 7 December 2014

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.

Thursday, 4 December 2014

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.

Monday, 1 December 2014

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.


Thursday, 27 November 2014

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.

Friday, 21 November 2014

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.

Wednesday, 19 November 2014

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.

Sunday, 16 November 2014

No.124. Celebrate the special days.....

My blogs aren`t so often now, two reasons for that, firstly, it means thankfully there have been no drastic changes and secondly, it was all becoming a bit too intense and I just need to step back sometimes.

There are slow changes in the usual things, like Chris`s voice and his balance, but thankfully no other major changes for now.

Since Chris was first diagnosed with MND I have gotten to know quite a few people in and out of the virtual world who have been touched by this evil disease in one way or another. Some have been battling with it for quite a while, others were taken by it very quickly. In this past 6 months I have heard of a few people who have passed away during that time and it brings home the reality that this disease really doesn`t have a cure and is always fatal. Five people will die of it everyday, this ticking, malevolent time bomb of a disease steals the body of it`s motor neurones by stealth, like a parasite, sucking the life from everyone it touches. Without muscles, especially those that help us to breathe, we will die. Yet in spite of all this, in the majority of people, their minds are untouched and there lies the cruelest twist of all, to be aware of every step of this evil disease.

There is one particular family who are fighting this disease at the moment. Eric is in the later stages of MND, he and Davina, his wife, have three young daughters. He can no longer talk without the aid of technology, he needs constant care and he sleeps a lot because the medication to help him breathe makes him drowsy, but that bright, brave mind, still glows and fights and his strength and Davina`s are a true inspiration. Their story would touch anyone, but it particularly touches me because I see our future and while my heart breaks for them it also breaks for us. Our life is tame and calm in comparison for now, but looking into the future that others live or have lived, is very scary. Even now Davina is still able to offer love and support to others, myself being one, and I am very humbled by such kindness and strength when facing losing the love of her life.

Chris won`t talk about how he is feeling very often, he is still able to do some of the things he would like and he still laughs and enjoys life in spite of MND. He told me though that the reason he won`t talk is because he knows he will cry, so underneath that brave front is the fear, anger and feeling of unfairness that everyone who is going through this feels.

Davina told me that we must make the good memories now while we still can. She and her daughters  are hoping for one more last, special Christmas with Eric and we are going to do the same. I am going a little mad with decoration planning etc in order to make this one really special Christmas for us as family. I hope Chris will have a few more Christmases left in him yet, but the future Christmases will always be different for Chris as his health inevitably deteriorates. Someone else told me to celebrate every special occasion as if it will be the last, even though hopefully it won`t be and that is what we will most definitely do.

Take each special day and celebrate it as if it were your last, because with MND...it may be.



(Davina gave me permission to include her and Eric in my blog.)

Thursday, 13 November 2014

No. 123. Thankful for the support.

Chris's MND nurse telephoned him for a phone consultation yesterday. As he is more unstable now when walking, she is going to contact the OT and get them to drop off one of those walking trolleys for him for in the house. He has had one or two falls and he actually fell in the hall yesterday evening so maybe that will be a good idea. Luckily he was only carrying a glass of water and not a hot drink as it went all over him. He did have a good laugh about it though

I also emailed her a copy of the letter from our MP and PALS at Peninsula Health trust, saying that after investigation, Cornwall Wheel Chairs will provide an EPIOC wheelchair if required. She is going to do some more digging on that too. It is good to know Tracy is there to help with these things.

Chris hasn't been getting out as much as the weather has been so miserable , but he made the most of it yesterday when we had some dry weather. I'm not sure he will venture far today as it is awful here today again.

We are both very grateful for the support team Chris has. We certainly can't complain, they have all been brilliant. It has made living with this disease for both of us a lot easier than it would have been and especially for Chris of course.

Tuesday, 11 November 2014

No.122. Fighting is a requisite.

The MND association visitor came to see Chris for the first time today. She was a lovely lady and told us she had been involved with the MNDA from way back when she was a physio. We were both shocked when she told us that she was 82, we never would have believed it, she seemed years younger. It's amazing that she still spares time to be an AV, what a special lady. It is good to know there is someone else who can fight our corner if needed.

Chris was also meant to see the speech therapist today, but it was cancelled as she is sick. We have been experimenting a bit with some more different foods that Chris might be able to eat. He loves his cake, but it was causing way too many choking episodes. I thought I'd buy some malt loaf and Jamaica ginger cake as they are both moist, sticky cakes and so far Chris hasn't choked on them which is brilliant. I also made him some Russian cream which is a Cornish, custard type of pudding. I've never actually made it before, but Chris's sister gave me the recipe and Chris is really enjoying that too along with some jelly. It's all a game of trial and error for now though the neurologist did tell him that he will be totally reliant on the PEG to feed him one day, but not yet, for now he can still eat some things.

Another few days living with MND has gone by and mostly we just live each day as it comes. We both miss Chloe and she is a little home sick, but in a month she will be home for her Christmas break. This term was the worst last year, I think the dark evenings and miserable weather don't help. At least in this modern world there are plenty of ways to communicate. I know Chris misses her loads.

For any of us our children are our reason for living. For anyone with a terminal illness like MND this is especially so. I know Chris will fight with every last cell in his body to be around for as long as he can. MND is ultimately in control, but we are both great believers in inner strength and that it will help to put up a good defence and stall things for a while if we fight, just the same as giving up can bring things on faster. Giving up is just not an option. Fighting is a requisite.

Saturday, 8 November 2014

No.121. Eating is a need.

Life goes on in this MND world. Friday was a visit to the neurologist which was just a catch up really and checking that Chris is getting all the help he needs. The speech therapist also phoned to make an appointment for next week.

Chris has also been having more choking attacks. It mainly happens when he tries to eat something he shouldn't, but who can blame him, this man who used to have such a large appetite and love his food so much. It took ages this lunch time to properly clear his airways, I always fear I am going to hurt him with so much back slapping. Tam was there too at the time and she cried, partly because it frightened her and partly because she said it was so unfair that Dad couldn't eat like the rest of us anymore. It really took it out of Chris too for a while, I think it scares him too. He is losing his appetite slowly, partly I suppose because his diet is more limited now and partly because eating can sometimes be scary. The problem is when he does have no appetite it really depresses him. Eating is such a primal thing and a source of pleasure for all of us and it is also an important part of human interaction too, something we all take so much for granted. Eating truly is a need in more ways than one.

I am glad Chris had the PEG fitted when he did and that he managed to get his weight up to a more normal level. He was always bordering on being underweight prior to MND and this extra 7lbs he has gained has given him a little buffer. The funny thing is it has only gone on around his tummy, the rest of him is still skinny, and the muscle wasting is starting to show on his arms and legs. He has grooves appearing along the muscles. It is most obvious in his hands, the wasting between his thumb and finger on both hands is very noticeable.

His balance is slowly getting worse too. I always thought it would happen that he wouldn't be able to walk as his legs would be too weak and I expect that will happen one day, but I never thought that he might not be able to walk because he can't hold himself upright any more. Imagine when you were a kid and you used to spin around to make yourself dizzy and you couldn't stay upright, well it is a little like that for him now. Once he gets going he can stay upright as long as he can hold onto something or has his walking stick.

Chris doesn't give up though, I know he will keep going for as long as he can. We all just get on with it, what else can we do? This is how it is now, so when he can't get up from a chair without wobbling, we laugh as I grab him and when he can't get his words out, we laugh about that too as I try to second guess him. That might sound weird, but we'd both rather laugh at this disease than cry because of it, for now anyway.

Thursday, 6 November 2014

No.120. Back to reality again.

Well here we are back home to reality, it really was lovely to escape for a couple of days, but we knew it couldn't last forever.

Along with the drive home came the rain, the driving mizzle so typical of Cornwall, at least it stayed dry while we were away. The house seems so cold too, even with the Aga and the log burner going in the lounge, I think we really were spoilt in that hotel.

I've set up Chris's PEG feed ready for when he comes up to bed. His appetite has been all over the place while we were away and he really didn't want to eat the light tea I made him when we got home. It really depresses him when he doesn't enjoy his food. Hopefully it was just the change of routine. 

We are also back into appointment mode tomorrow, Chris is seeing the neurologist up at Treliske and next week he will meet his MND AV (visitor) for the first time and also meet up with the speech therapist again. He will also have a phone appointment with his MND nurse who is based in Plymouth. I guess it is good in a way that all the appointments come at once, because at least then Chris does get a breather from them for a week or two.

A little break does recharge the soul ready to fight on. I don't think proper holidays suit Chris, but a couple of days away is just about right, hopefully we will be able to do it again before the MND makes it too difficult. We are so lucky to live in Cornwall because we don't have to travel far so find some kind of escape.


Wednesday, 5 November 2014

No.119. Escape.

Well these couple of days have been nice. Staying at a beautiful four star hotel by the sea just has to good for the soul. Chris didn't want to use his enteral pump feed while away, so we left that at home. He managed to eat the lovely meal we had last night and there have been some suitable choices to make during the day as well. He felt a little unwell this morning, so we cancelled the evening meal and had a late afternoon tea instead in the Terrace bar. We sat at a table overlooking the sea which was really nice. I think the rich food was a shock to the system even though it was delicious. The staff have all been lovely, we can certainly recommend The Headland for a special treat.

We managed to get out for a walk around in the morning as the weather was pleasant if a bit breezy and chilly. We didn't venture far as most of the paths off from the hotel were way too steep for a wheelchair and were a little rough, well they were coastal paths, so we spent a lot of time chilling in our room. We certainly know how to live it up as we watched the very first episode of Thunderbirds on YouTube while lying on the bed, that made Chris's day I think, oh the simple things. 

We could see a lot of brave souls surfing off Fistral beach through the window of our room, it looked pretty darn cold from where we were, rather them than me. They looked like seals bobbing around in the surf from here.

We then had a lovely surprise as some flowers were delivered from Chris's sister and brother-in-law, narcissi, tulips and irises, all Cornish flowers, they smelt beautiful. We just spent the evening chilling , watching fireworks out of the window and watching TV, it was lovely.

It was nice to escape for a couple of days and taste a little bit of luxury, we have a lovely family and are so thankful for that.

MND might have still been looking over our shoulder, but we kept giving it a darn good poke with our elbows while we were here. More memories to add to the bank.

Sunday, 2 November 2014

No. 118. It cannot be ignored.

My head has still been in a strange place hence fewer blogs. I want MND to go away and leave my husband alone, so maybe if I ignore it, it will.......... if only.

Progression is a funny thing, it is very inconsistent. It is different with everyone I know. With Chris he started with the limp, but that seems to have stayed at the same level and other things have taken over. He says his hands are getting weaker and his swallow and voice are still deteriorating as is his balance.

What a strange disease this is, random in it's choice of victim and random in which parts it will affect first. 

When Chris was first diagnosed we were on edge, waiting for something different to happen, would he be able to walk at all by Christmas? We still won't know the answer to that one till Christmas comes. It will be a different Christmas for sure if only from the change in Chris's diet and the foods he now can and cannot eat. 

It will be a Christmas though where he will be spending the day with his family for once, how that irony sticks in my throat. I'd gladly swap this Christmas for all the past ones though, no matter how much I complained at the time. I'd gladly swap the huge meals he used to have, Christmas or otherwise, for the meals he will have to have this year or having to watch him choke on more and more foods. I'd gladly spend Christmas Eve without him as I always have before because of the farm, how I would get cross with him. I would always feel last on his list, but I would rather that than him have to spend this Christmas Eve night attached to a feed pump. 

They say to be careful what you wish for, this was what I wanted, to have a husband who worked 'normal' hours let alone part time, to be able to spend lots of time together, to actually go to bed at the same time, all those things I wished for, but not this way, not ever. I'd gladly go back to before without a second thought it if meant Chris could be well again. This isn't fair, not on him, not on any of us.

Chris is not the only one to have his life changed forever by this dreadful disease and he certainly won't be the last. What MND has done to him will not get better, there is no cure, no real hope in the here and now. We could fill our life with anticipation and dread waiting for the next sign of deterioration, but we try not too. We are not super heroes nor are we brave, we are just coping the best way we can the same as everyone else in this position. We can't totally ignore this disease because it infiltrates every part of your life, it changes things for ever so we have to adapt in order to survive, but that doesn't mean we have to like it.

So I can try to ignore MND, but it's like that person on the coach that keeps kicking your seat, you can only ignore it for so long before you explode and you have to face it head on.

Wishing, ignoring, it changes nothing, we just have to accept it and get on with life. We can still laugh and have fun though and we are going to make sure this Christmas will be a wonderful one, in spite of everything and especially in spite of MND.


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!