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Sunday, 31 August 2014

No.74. The simple things.

TIME OUT. It did us good to get out and away from the farm yesterday to somewhere other than a hospital appointment. It wasn't anywhere fancy, I just took Chris and Chloe to see the places I loved as a child when I lived in Hayle. I knew it would be level, so wheelchair friendly. We walked a few miles, but it was worth it. Chris loved it and it brought back memories for me. I still feel mentally drained, but even though pushing Chris in a wheelchair should have been a constant reminder of his MND, the walk was actually a really good distraction. It has been so hard not to think of the future lately.

Sometimes the simple things are the best. 

BACK TO REALITY. Chris has a week of appointments, the dietician on Tuesday, the speech therapist on Wednesday, plus yet another INR blood test for his PEG op on Friday, though I will find out I think whether or not he needs another one, or if last weeks test will suffice. Certainly plenty of reminders of MND this week so yesterday's distraction was really needed. MND really does try and rule our lives.


No.73. Back to memory making.

felt more like my normal self yesterday. Kind and more importantly, understanding words from friends and my MND family helped a lot. So thank you for that. I slept better too.

Chris's problems with his swallow and the gradual deterioration of his speech still plays on my mind. It's beginning to dawn on him that this is happening quicker than he would have wanted. We joke that we need to make a signal that means I love you. I suggested hand signals, but Chris couldn't make his fingers do what he wanted so we laughed at that. I know there will be fancy technology available, but we wanted to think of something more personal. I guess that is a work in progress.

Chloe goes back to BIMM in Brighton in October, to continue with her degree for 3 months. The way things have progressed I wonder how Chris will be when she comes home in December. I hope he will still be able to talk, you never know with this awful disease. I've told him that he needs to say all the things he needs to say now while he can, all the important and personal stuff. I think he is beginning to get that.

We are off on holiday on the 20th, just Somerset, it's the first proper holiday we've had in 10 years, the farm always got in the way before. I've been busy researching all the places we want to go to and checking that they are wheelchair friendly. We quite fancied Wookey Hole, but I think it was a bit much for us to expect that going down into caves would be wheelchair friendly, so I think we'll give that a miss. The bungalow is wheelchair friendly and the whole family is going except Tam and Karl, they have work and pet duty. It will be nice to get away and have some fun before Chloe goes back. Jordan will have his birthday while we are there, my eldest will be 27, so we will have a reason to celebrate. 

Well, the sun is shining, we are off off out this afternoon together, just Chris, Chloe and I, time to stop dwelling and back to making some good memories, one thing MND can't stop happening.


Friday, 29 August 2014

No.72. Woe is me.

I really didn't want to write this blog today, I couldn`t shake a low mood and tiredness all day yesterday. I guess this disease affects us loved ones of those who have MND too, but in different ways. Most of the time I can detached myself from it. I talk about it, I write about it, but it's like I am talking about a stranger, not my darling husband. I vowed if I am going to write this blog though, as a personal journey, then I have to chart it all, even when I would rather not share it.

Even now I keep hoping I will wake up and find out that someone is playing a really bad joke on us, but of course I know that it`s all so very real. People who know Chris ask me how he is, I don't know what to say half the time, my reaction is to say OK, but of course he isn't, the anger inside me wants to shout 'He's got bloody MND and he's slowly dying, how do you think he is?', but I would never do that, people are only trying to be kind and of course I don't really mind people asking. This disease is slowly taking my husband from me, bit by bit, and I hate it!! I hate this disease and I hate what it is doing to him. At this moment I am neither feeling brave nor positive, I just feel angry and scared.

Back to reality, the nurse came to see Chris around 10am yesterday. We were a little confused because our GP had said she was a MacMillan nurse, but she said she was part of the NHS palliative care team, maybe she was, maybe this was something similar. Either way she was a lovely lady and someone else who will be there as the need arises. This was the first time I had seen Chris get a little emotional with someone other than me, family, or the consultant, especially when he talked about what he can no longer do outside. I could tell she wanted to talk about 'future' stuff, hinting at the problems that may arise like bedsores, suggesting medication that might help with the choking, like muscle relaxants, but she said they would make him really sleepy. I don't think he wants that yet. The awful thing with this disease is that nothing can really halt it or make it better, you just know that it is going to keep getting worse, keeping up it's relentless onslaught on my dear husband's body.

We did have some smiles yesterday too though. In the morning our farrier had posted a brilliant Ice bucket Challenge video on Facebook and Chris and I had a good laugh at that and were really touched by the sentiments and in the afternoon the MNDA posted that their total funds, including the Ice Bucket Challenge funds, had reached £4,500,000, quite incredible, but somehow even that couldn't really lift my mood. I hope today will be a better day. I'm going to take myself for a walk around the farm I think, if the weather stays nice, exercise and fresh air will hopefully do the trick.

Thursday, 28 August 2014

No.71. Back to the 'new normal'.

Yesterday was a better day. We both had a good nights sleep, I sometimes think that emotion can be more tiring than physical work.

Chris had a small choking attack while doing nothing yesterday morning, he wasn't drinking or eating. That freaked him a little. I had to go out to my WW's class. I was gone a couple of hours, when I came back he was still eating his breakfast. He said he was scared he would choke while I was out so was eating really slowly, that's not good.

On a good note though, a new appointment arrived for Chris's PEG op. Friday the 5th, only a week away, it can't come soon enough. A Macmillan nurse is coming to introduce herself to Chris later, it seems a bit soon, but it will be nice to say hello I suppose. I'm not really ready to think about when Chris might actually need one, that's a bit scary. 

It was really heartening to think of all the awareness that has been raised, but there is obviously still some confusion over the names ALS and MND. I was speaking to a lady yesterday and she said her daughter was going to do the Ice Bucket Challenge for ALS. She told her daughter that she thought ALS was MND, her daughter said that it wasn't, it was a new disease. Of course I put her straight and also gave her the text donation link. It just shows that the message hasn't gotten everywhere. It makes you wonder where she would have told people to donate.

I was also listening to a brilliant interview on the BBC World service with people who have MND. One man said that people in rural areas don't get such good service because they don't live near specialist centres. I have to disagree with that. Chris was contacted within a few days of diagnosis by his MND nurse and support team and it has been on going ever since! In fact sometimes we want to say, 'Enough already', but of course we don't, but here in the UK, you don't have to live in the big cities to get the best care.

Last evening the Ice Bucket funds topped £3,000,000!!! Chris and I sat with my i pad while he was eating his dish of purée and I just kept pressing the refresh button. We yelled out when it reached that number. It was awesome. 

On the puréed front, I just purée what Chris usually has and the meals actually taste really nice. The girls suggested I could sell them, like milk shakes, but call them meal shakes instead, not too sure it would catch on. We had a laugh about it. I melted dark chocolate and topped it with Bailey's for Chris's pudding. I think he rather enjoyed that.

What a difference a day makes. The fight and the laughter are back thank goodness. I spoke to a lady I had never met before on Face Book yesterday, her husband has recently been diagnosed too. She said that MND is the last thing on her mind before she goes to sleep and the first when she wakes up. It's the same for us, but this whole thing would have been a great deal harder if I hadn't come across the wonderful MND 'family' that is out there. They've been there for the likes of us, started the Ice Bucket Challenge and are all just pretty inspirational and when I wake up to see videos that have been done by family and friends, well it warms the cockles of my heart. Thanks everyone. This disease used to thrive on the lonelyness it also brought along with the symptoms, but in this modern world of technology, that lonelyness is gone, that's one battle we have won MND.

Wednesday, 27 August 2014

No.70. Down, but not out!

Well yesterday started off well after discovering the Ice Bucket Challenge funds have risen to over £2,000,000!!! I was speechless to be honest. This morning it was over £2,600,000. It's just amazing.

We took ourselves off to Treliske, an hours trip, tackled wheelchairs and lifts and eventually found the endoscopy department, tackled the doors to the reception with help, only to be told that they had forgotten to book the anaesthetist!!! I couldn't believe it. It was obvious the nurse was angry, but that wasn't much consolation for Chris, especially as he had two choking episodes yesterday and we had both psyched ourselves up for it. They said they would reschedule it quickly, I hope so. I contacted Chris's MND nurse and she is going to help chase things up. We were not happy. A precious morning was wasted, although we did get to visit some of Chris's family who live near to Truro, which is always nice. He was starving by then too, so his sister obliged with some much needed grub for him when we got there. He had the first choking attack of the day there too. It is always scary, but I got a bit emotional, I think I'd been on the brink since leaving the hospital. At least when we arrived home the correct size wheel chair had arrived, it looks more like a normal wheelchair now, rather than a bariatric one!

I felt really emotionally drained later, especially after Chris had his second choking attack. I hadn't puréed his evening meal quite enough. I know now it needs to be like thick soup. He was very tired too. He hasn't said much, but I know he wanted this PEG done yesterday. He tried to keep smiling, but it had drained him too. I was just about holding it together and then I read that Tesco were donating a percentage of their income from their ice sales to MND. Now I wouldn't normally get tearful over anything Tesco does, but I broke down. All the money being raised, donations, family members doing Ice Bucket Challenges etc and then topped by yesterday's disappointment over Chris's PEG op, just tipped me over the edge. I also don't usually take too much notice of people who write negative stuff on the internet either, but yesterday, one idiot caught me at a bad moment and I gave the troll a good mouthful. One should never feed a troll, but it felt good at the time. A nice cuddle with my husband on the sofa with some alcohol made things a little better and today is another day.

Everything in life attracts the good and the bad, especially in human nature, but the bad fades into insignificance compared to the goodness that is out there, Family, old friends, new friends, they are what counts. The people who are there for you, who understand and even if they don't, they do their best to try.

Life sucks sometimes, like operations getting cocked up or with bigger things, like your loved one getting MND. Somethings can be rectified, some can't. People say we are brave, everyone with MND is brave, there are only two options, to give up, become full of self pity, or show this disease that it has a bloody fight on it's hands and I am going to be there fighting it with my husband all of the way. We may be down, but we are certainly not out.

Tuesday, 26 August 2014

No.69. Mixed emotions

Yesterday was full of mixed emotions , the elation of the IBC funds hitting £1,000,000 around breakfast time and then them reaching £1,650,000 + by the time I went to bed. I was thinking £2,000,000 was a real possibility by the time I woke up today and it was £2,000,000 and more, absolutely, bloody fantastic.

I also spent yesterday getting anxious about Chris having his PEG fitted today, yet another reality check in this disease's progress. I think Chris will be glad to have it done. It will take some of the fear away from eating for him. The tube will be inserted via an endoscopy tube I think and then come out through his abdomen. That will mean he will be able to take liquid feeds that way once he can no longer swallow properly, which may be sooner than we had hoped. I think they will tell us more later about how to use it. We have to be at Treliske for 10am so we will have to leave around 8.30am. 

I wonder what the IBC fund will be by the time I get home ? Chris will have to stay the night and I will pick him up tomorrow.

Having to face the reality of this disease in the here and now really does suck, imagine never being able to eat or drink orally ever again? That is the reality for most MND patients sooner or later. I heard tell of someone who would have Red Bull put down his PEG tube because it made him burp and he could then taste the bubbles. MND is so cruel. I pray to God that one day there really will be a cure for this awful disease.

BUT £2,000,000 THOUGH . A-FLIPPING -MAZING and two million thanks back :')

Monday, 25 August 2014

No.68. The hero and the wife.

(Just woken and the funds are £961,332.51. That's flipping amazing !!!!!)


Chris was still low yesterday morning, he said he felt nauseous too, but he made himself eat breakfast. It was pouring down with rain and I know he wanted to go out and do some work, but I suggested we go to PC World to have a look at laptops. It would get us both out of the house for a couple of hours. They didn`t have much there really, but it gave us an idea of what was available. On the way home the sun came out for a while and after Chris had rested he was itching to get back out on the farm.


Chris has to have a blood test today before his PEG surgery tomorrow to check how his blood clots I think. I was interested to read one of the MND scientists say they were researching when is the best time to fit a PEG and in which way. Just talk to the gastro surgeons, speech therapists and dieticians. Chris went this early because he was advised to by them. The gastro surgeon told us he wished everyone came this early. Surely it can't take too much to survey the professionals that deal with this on a regular basis.

When we got back I found out that the IBC fund had reached £700,000, that was unbelievable. Then our farrier left a post on my Face Book page to congratulate me on our picture being on the MNDA home page. I had no idea what he was talking about, so I had a look, there at the top were three scrolling pictures, Benedict Cumberbatch, Jose Mourinho and ours !! I haven`t the foggiest why they picked ours, but honoured all the same. There are others who are more deserving and have been raising funds and awareness for years, maybe our photo just fitted. Life is full of surprises and not all of them bad.

I think it is quite possible that the IBC fund could reach a million. That will mean so much more research and also training young people to be scientists to continue this work. Maybe there will be some money in the advertising budget to do a TV ad for the `Bake it` days next June. We could call it "The worlds biggest `Bake it` morning " and yes, if you get that, it was intended. Seriously though I  guess research and support at ground level should really take priority.

I felt my own mood slipping again last night. I think I have thrown myself into trying to spread awareness and writing this blog as a way of dealing with all of this. I feel so helpless watching this disease gradually take hold of my husband. It really does break my heart to see this happening to him. I know I am not the only one going through this, but each of our pain is our own. It helps to know there are others who understand, but in the moment it can feel very lonely. I have no idea if Chris 's progression is fast or slow, we haven't asked, but he has gone from just a limp in February, to his speech, hands and swallow being affected. He can't walk very far, needs his food puréed, chokes easily, loses his balance when he stands up, can no longer drive the car and now finds writing hard. That doesn't seem slow to me, so much for Riluzole. Chris is really the strong one through all of this, he can't wait to get out and do some work outside, he tries his best to just get on with things and he also seems to accept these changes to his body without complaint. I know it frustrates him at times, because of the things he can no longer do, but he doesn't get angry, just a bit sad sometimes. Chris has true courage and he will always be the hero in my eyes.


No.67. Low mood, fear and great big smiles.

Yesterday Chris was in a low mood for a while, I think it was 'post sale' blues and the the sudden reality of it all, he was still very tired too. I adapted the usual Sunday roast for him, just pureeing the meat with gravy and giving him mash instead of roast potatoes. He uses the adapted cutlery without question now too.

Chris also said he was having trouble writing. He has always been very meticulous about keeping a diary, especially for recording work stuff. I think he would benefit from a laptop or tablet. He isn't at all computer literate, but I think he needs to learn. It will be his main communication tool one day.

I did get very cross with Chris yesterday. He went into a pen of four heifers to worm them, all by himself, a definite no,no ! He said they were OK, but if he should have fallen and they had been spooked, well it doesn't bear thinking about. 

I seem to be very tired lately, can you get tired from worrying? I spend most of my time worrying when he is outside and with good reason it seems. Chris can be a bit reckless sometimes.

I've heard that some people are getting irritated by the Ice Bucket Challenges filling their time lines. One journalist even wrote yesterday that they were 'Vomit inducing'. I think she was complaining about certain celebrities doing the challenges for their own gain. Well do you know what? I couldn't care less about that. As long as they mention MND/ALS and where to donate ,they can show off all they like. 

When I see challenges from ordinary people on my time lines, remembering someone who has MND or has been lost to it, my heart breaks a little bit more for them. It is also them shouting out to say 'Look, we also lost someone to this awful disease' almost like a collective, online memorial. For once their voice is being heard beyond their own community and family. I find it very moving .

This morning the funds raised on the Just giving page set up by two MND volunteers has just topped £549,000!! That is beyond incredible. They set a target of £500 in the beginning, this has gone beyond anyone's widest imaginings.

So.. these Ice Bucket Challenges may be irritating some, but for those of us affected by MND, it has given us one hell of a reason to smile. The hope of there being a cure being found one day is becoming a real possibility, maybe not for those who have it now, but certainly for future generations.

MND, you can run and you can hide, but we have the world on our side now. We are no longer alone.

Sunday, 24 August 2014

No.66. A good day all round




 Chris and I with his 92 year old dad Tom, at our farm auction.


I woke yesterday to discover that the funds on the Ice Bucket Challenge page had broke the £100.000 barrier, that was incredible !! I can`t tell you how good that felt. After breakfast I loaded up Chris`s scooter in the car and off we went to our machinery sale, all dressed up in our MND T-shirts and with their fund raising bucket on board too. Now I`m quite shy, but I `sucked it up' and set about asking the farmers that were there already for donations. Some did, some said they didn`t have any cash, so I gave them a leaflet I had made up with the text link on it, so no excuses after that. After a while, I found I was asking the same people and I joked that `All farmers look the same`, I chickened out a little then. The auction was about to start so I left people alone. During the couple of hours the sale went on though, people were coming up to me and putting money in the bucket. We actually collected £223 which we were pretty stunned with. The auction itself went really well and everything was sold. There were certainly a lot of people there.

Quite a few people asked about MND and quite a few had already been touched by it in some way. I had to keep telling Chris to sit down as he, being polite as always, had to stand up to shake hands with people. I could see him wobbling from afar, so I had to nag a bit. I think we raised some more MND awareness yesterday as well as raising some funds. I did mention the Ice Bucket Challenge to people, but most farmers are too busy this time of year to even have heard of it. We were happy to settle for a quid or two in our bucket.

Chris was really tired when he came in last evening. I saw him after he had returned with a tractor from the auction field. The shed wasn't that far away, but he looked like he was wading through treacle or had heavy weights attached to his legs. That's the first time I've seen him walk that far for a while. The purreed meals seem to be going down OK, though sometimes it is a bit of a guessing game for Chris to find out what he is actually eating.

Yesterday was a pretty amazing day really. The auction went well, we raised a good amount of money for the MND association, Dr Who was on the tele and the Ice Bucket Challenge was over £230,000, by the time we went to bed. 

The money raised is such a big deal, but it is the awareness that has happened, that is the really big thing. MND and the people who have it, their family and friends, those touched by it, were as if trapped inside a bubble. The fundraising, the awareness, was mainly done by them. They would shout out loud about this disease, rarely getting heard. Suddenly this Ice Bucket Challenge phenomenum took off and that bubble was burst. At last everyone could see what was inside, could hear their shouts and could learn about MND. They  started to understand a bit more about it and it moved them enough to donate. Thousands and thousands of people have texted the Just Giving page and many of those will have learnt what MND is all about for the first time. 

This is what we mean by MND awareness. I write this little blog mainly for myself, the number of people who actually read it is not that great, I never had any expectations of it reaching any further, but hoped to raise awareness in a small way. What has happened in the past few weeks with these Ice Bucket Challenges, would have been impossible to imagine before then, the awareness created and the funds raised are truly, bloody amazing. The burden of the few has been passed on to the many and we are so very grateful. Long May it continue. 

Saturday, 23 August 2014

No.65. Hope is priceless.

Yesterday was a funny sort of day. It started with me waking early and I had the urge to challenge all the local TV and radio stations to do the Ice Bucket Challenge. After I annoyed them I got on with my usual routine. Chris had a phone call from his MND nurse Tracy. She spoke to Chris for a while and then spoke to me. I was surprised to learn that she had read my blog and then she said BBC Spotlight had contacted her about the Ice Bucket Challenge and that they wanted to come to the hospital ( in Plymouth) where she is based, to film a challenge live. I joked that it was probably my fault for tweeting them. We`ll keep an eye out over the next few days and see what transpires. I hope they do go and film them doing something.

Chris then had to go and have an ECG which was a pre op check for next week. His GP grabbed him as he left. She asked about his PIP application and said she could speed it up. It`s been nearly 3 months so far since Chris applied, maybe she can, I don`t know. Ironically, especially with the hoo hah over MacMillian and the Ice Bucket Challenges at the moment, Chris`s GP also said that she wanted him to meet a MacMillan nurse who would be there for him in the future, just to introduce herself to him. MacMillan seemed to give the impression yesterday on Twitter that they were a cancer charity, but I always thought they were for any one who was terminally ill. It will be nice to meet her anyway.

It was heartening to see MND being dealt with properly on the TV yesterday.`This Morning` featured a lovely lady who was living with MND. It was discussed properly and informatively and linked in the Ice Bucket Challenges too. It also said to donate to the MND association. Brilliant ..at last!! The BBC lunch time news also had an intelligent news item about it, even talking to someone from the MND association. The best thing of all was watching the funds on the Ice Bucket Challenge fund raising page just go up and up !!!

On the way back from the Doctor we stopped off at the field where all the machinery was being set up for the sale that is on today. It was kind of sad driving round it all, the end of an era. The farm will still go on, just differently. We will be off later to watch how it goes. We will all don our MND T shirts too and try and get all those who come, to donate. I`ve never been to an auction before, that`ll be a new experience.

After lunch someone came to the door to talk to Chris. After a while I realised that he'd been out there a long time so I had a look. It was a different man this time. I could see Chris leaning, propping himself up against the door frame. Now anyone who knows Chris will tell you that he is one of the most polite people you would ever meet. One of life's gentle souls. I knew he would never say he was having trouble standing up so I took him out Chloe's piano seat and made him sit down. Half an hour later he was still there so I pretended he had a phone call to rescue him. Even talking for too long can get tiring. I probably fuss to much, not going to stop though.

I think unless you have MND or loved someone who has, you probably won`t understand the elation that is going around the MND community at the moment. We are like one united family all after the same thing, awareness and a cure. The IceBucket Challenge won`t last forever, but it is on a roll at the moment and MND awareness is suddenly happening everywhere as well as the money pouring in. This is a relatively new experience for us, Chris only being diagnosed in May, but it is palpable the excitement that is being felt from people who have been waiting for this for years. If nothing else, more people will know what MND is and may be more willing to donate in the future. I know this phenominum won`t last for ever, there will be an end to it at some point, but I`m pretty sure the feel good factor from the euphoria it has created, is going to last some while.

What this has done more than anything though, is give everyone who has MND and their families, hope and that is priceless.

Thursday, 21 August 2014

No.64. Hope and sadness.

I`ll leave the politics behind for this post except to say that the donations are growing, cumulatively, worldwide and as of this morning the UK funds for the Ice Bucket Challenge have exceeded £35,000, which is amazing!! The fight for a cure continues. This battle WILL be won one day.

Chris was very tired yesterday, at least he was resting more. I`m very glad we don`t live in some modern, open plan house as Chris comes in and works his way round the rooms holding on to the walls, worktops, furniture, what ever comes to hand. His balance is getting weaker without support.

Chris doesn`t need all of his food pureed, it just makes eating easier, especially with his evening meal when he is more tired. I dug out my Kenwood Chef and used the liquidiser that goes with it, That did a much better and less messier job of pureeing, than the hand blender. Last night I cooked sausage, mash, baked beans etc added some flavouring and pureed it all. It didn`t look too appetising and I thought I'd better taste it first, if it was yuk then I'd cook it again, but I tried it and it actually tasted good. Chris enjoyed it and more importantly, he ate it in a fraction of the time it would have taken him lately and more importantly it took less energy and he didn't choke.

It does makes me feel sad to have to do things like this, I don't mind, but it makes this all so very real. I`m sure it will be another thing we will get used to on this unwelcome journey.  

Chris has a phone consultation with his MND nurse today. She covers Devon and Cornwall and taking a whole day to visit one patient doesn`t really make sense. He has also been called by his GP to have an ECG later today. I think that must be to do with his op next week for the PEG.

Each of our own experiences with MND are very personal to us individually. I am going to lose my husband far too soon and in the most awful way and my heart breaks silently while we try to get on with life. I do feel particularly saddened though, for those who have familial MND. One young man in the US is caring for his mother who has MND and has recently been diagnosed himself. That is unimaginably cruel and I can`t contemplate the strength he must need to deal with all of that. A little part of my heart breaks for everyone who has, or will have, this awful disease. I hate MND more and more each day.

Please help us fight this awful disease by donating if you can. Text ICED55 £5 (or whatever you can afford) to 70070 . All funds go to the MND association in the UK or elsewhere check out the MND/ALS charities in your own country. One world fights for one cure.

No.64. Let it be for MND.

Yesterday was pretty much the same as before, Chris working too much, but I`ll let him off till the sale is over, there will be no excuses then. On a slightly funny note, according to Chris anyway, he said while he was power washing the sprayer he could barely stay upright as the power from the water was almost knocking him over. Guess that shows how much strength he has lost.

I bought some insulation pipe for his cutlery to make the handles thicker. It seems to work quite well even if Chris did make a face when I showed them to him. I also rang the people who supplied the wheelchair, they told me I had to go back to the person who refered Chris in the first place, the physio, to get a new referal. I then had to phone the physio and she phoned me back later to say she would do that, so now we wait, though to be fair, they were pretty quick last time.

Writing this blog has helped me personally in so many ways, not least from the advice that has been offered from others who have or are going through MND. I know with some people who have lost loved ones to MND it is probably digging up unwanted memories. I never wanted to upset anyone. This is just a record of Chris`s experience with this disease, sometimes it will be boring, always it will be honest and frank. I hope it will continue to be that way.

The Ice Bucket Challenges have not been without controversy and I`ve found myself getting very angry and irrate about our TV`s representation of them. Shows like `This Morning` and `Good Morning Britain` have shown presenter`s doing the challenges, but rarely is MND mentioned. Yes ALS is, but very few people in this country know what MND is, let alone ALS. Never once has there been information about actually donating, which is pretty important I think. I believe some people even think ALS is cancer due to a (predominantly) cancer charity hijacking it for themselves. They are a great charity and do a great job, but I think they would have something to say if MND started advertising that they were organising the worlds greatest coffee morning. This is the first time, as far as I know, that MND has had such high profiling. It would have been gracious of them to just let it be for MND. I 'm not talking about individuals here, they are free to raise money however they choose, I'm talking about the organisation itself. Hopefully constant nagging from many of those fighting for this disease, including me, will help get the message across. Certain newspapers are just as bad, promoting ALS / MND in their article and then giving the donation link for Macmillan. Unbelievable!!

MND is a rare disease, only around 5000 people have the disease in the UK at one time and 5 die from it every day.The Motor Neurone Disease association gets no funding from the government, it relies totally on donations, so having something like this Ice Bucket Challenge to promote awareness is priceless. Unless the media educate themselves and come on board with this awareness campaign, then it might not take off in the same way as it has in the US. I wish and hope it will though. I read or heard somewhere, that is takes a Billion dollars to develop a new drug of any kind and there is no incentive for the drug companies to develop an MND drug as the take up would be so low, the returns wouldn`t pay, so the research comes from MND/ALS donations alone.

I get that you probably have to be touched by this disease in someway to be affected by it. We all know someone who has had cancer, but not many people will thankfully, have come across MND. I'm sure my constant posts and rants on social media, may be irritating to some, but this is the only tool in our armoury, getting awareness out there. The only drug prescribed, Riluzole, seems to have made no difference to Chris at all. 'Just keep taking it' his consultant said, 'It might be helping', but it does feel like it is like grasping at straws some times. We are never going to know if the MND would have progressed faster or not without it.The great support care that is offered is from the palliative care team and that speaks for itself. No cure..terminal..the end.

Let's those of us that can use our voice, help those who have their voice and much more, stolen from them. The fight goes on until a cure is found one day. Get scared MND, the world is coming to get ya !!!

If you want to Donate to the MND association the just text :  ICED55 £5 to 70070 
or at www.justgiving.com/icebucket4mnd/        

Tuesday, 19 August 2014

No. 63. Jokes strictly between meals only.

The boys have been busy on the farm getting the farm machinery ready for the sale on Saturday. Chris wanted to do his bit too. He had been getting his sprayer ready for sale. It was one of the first things he noticed that he couldn`t do back earlier in the year. The booms fold up for transport and Chris found he couldn`t lift them back down, he didn`t have the strength. He found that quite upsetting at the time. He managed to do it yesterday, I think he was VERY determined! Now it is the finer things that cause problems. He said he was finding it hard to use his table lamp light switch, so I am getting a rocker switch to put in the cable and hopefully that will solve that problem and make it easier for him.

I have been busy making fliers to hand out at the sale. I thought it would be good to explain why it is happening and use it as a fund raising opportunity. Sales are advertised on line these days and there could be a lot of farmers turning up from all over. I`m sure a certain amount will be there out of curiosity. Word spreads quickly in the farming community and most people know Chris has MND by now. Whether they are genuine buyers or just plain curious, they will still get a MNDa bucket shook under their noses. I just hope the reputation of farmers being tight doesn`t hold true on Saturday. I am forever hopeful. 

After the success of pureeing the stew, I thought I would puree the chicken curry and rice I made last night. Chris had said rice was tricky now too. I have been using the hand blender, but I think I had better borrow a welding mask if I use that again as the fall out spray was going every where and it was hot !! I might try the food processor that`s hiding at the back of the cupboard next time.

I telephoned the physio about the wheelchair and it was the size she ordered. She suggested we try it first as there may not be a smaller one available. I did try phoning the people that supplied it yesterdat, but they didn`t get back to me. I`ll try again today. 

I had written my blog, well I thought I had and then this happened.

Chris had been out working quite late. I was a little cross with him as I knew he would be very tired, which he was, it also meant he was eating late too. He was slowly getting through his puréed curry and we were chatting and having a laugh. He started telling me a joke, you know, one of those ones where you are laughing too much yourself to actually tell it. Well Chris suddenly choked, he couldn't catch his breath. I slapped his back a few times, no change, he was getting quite distressed so I tried the Heimlich manouver. I just couldn't do it. I then shouted for the girls and Karl. Karl tried too, but he said Chris's tummy muscles had gone into spasm. It was making his gag reflex kick in too. We then bent Chris right over and gently slapped his back and slowly it cleared. I could see the girls were terrified. I was. He has choked before, but never this bad. It really scared Chris too. He is having the PEG fitted next week and it can't come soon enough. I think he was especially tired, his speech was slurry and I think that probably meant the muscles in his neck were tired too, hence the problems with swallowing. I understand he wants to be out side doing all the things he wants to do, but I think this scared him so much that he realised he has to look after himself a bit better than he has. Pride won't keep him alive, not in this instance anyway. His health has to come before the farm and I think we'll keep the jokes for between meals. I think I need advise on the best thing to feed him too. He has a visit to the dietician in two weeks.

There is no doubt that this choking event scared the hell out of us all. It really scared the girls as they hadn't witnessed it before. There is no right way or wrong way emotionally to deal with this situation and this disease, especially for our children. We are all made differently and all react differently. It doesn`t matter if we are over sensitive and emotional at times and it doesn`t matter if we put up barriers to block things out as long as the door is always held open for them to talk. There should be no guilt either way. I do the latter most of the time, but then the barriers come down and the emotions come out, that`s how I cope. I also talk about it a lot and I write this. What ever way we cope with MND is OK. Our children are old enough to know everything, it`s how they wanted it, no mater how painful and that way I hope they are never afraid to talk to me about it or ask questions. Scary things will happen and I don`t always have the right answers, but we support each other in anyway we can. 

I don't think I 've hated anything in my life as much as I hate MND, it is the most evil disease ever.

  If you would like to help the MND association to fund research and help those with MND/ALS please donate at www.justgiving.com/icebucket4mnd/ Thank you.

No.62. Spreading the word and lifting spirits.

Well yesterday started with me feeling really low. The MND is progressing and no where more obviously than with Chris`s swallow. I had made a beef stew on Sunday and there was plenty left, so  I pureed it all and made it into a thick soup. Chris loved it and it was so much easier for him to eat. I think I have to get my head around doing more of his meals like that.

Watching the TV at breakfast I saw some of the presenters doing the Ice Bucket Challenge. That was brilliant, but they seemed reticent about mentioning it was for MND, even saying it was for cancer at one point. No, sharing this craze was started in the US by a baseball player called Pete Frates, who was diagnosed with MND aged 27. He decided to use the idea to help raise money for ALS/MND. Because of the anomaly with the names, ALS in the US and MND here, the connection wasn`t initially made and it was high jacked by other charities. MND gets little enough funding, so it did irk me a little that they weren`t pushing that it was for MND more. Still Ruth Langsford was challenged and she did it live on `This Morning`so that was great too. The thing that really cheered me though was seeing so much positive stuff on social media, so many challenges happening, the word was spreading, it brought tears of joy to my eyes. Over $15 million has been raised already in the US in just over a month , which is amazing. Long may this continue, It`s about time this awful disease was heard and understood and got the funding it deserves.

On a more practical point, Chris`s new wheelchair arrived today. Now I saw the physio measure him, but this wheelchair is huge, Chris could fit in there twice !! I think they just brought the first one they could lay there hands on. Guess I`ll have to give them a ring tomorrow. Oh the joys of MND.


Here are some facts about MND.
There are four main types.( All are terminal )

Amyotrophic lateral sclerosis (ALS) affecting the upper and lower body.( Chris has this)
Progressive bulbar palsy (PBP), mainly affecting speech and swallow. 
Progressive muscular atrophy (PMS) which is much rarer and slower I think.
Primary lateral sclerosis (PLS), mainly only affecting the lower limbs.
(I believe all progress to the same end result.)
Info from the MND association web site.

Sunday, 17 August 2014

No.61. Highs and lows.


Boy, I woke early again this morning. Things have been preying on my mind a lot lately. MND has been on my mind non stop. 

Yesterday was all about family time. We spent the afternoon at a dog show where Chloe performed her music for 30 minutes. We were really pleased that we could get the wheelchair into the Kangoo and all of Chloe's music equipment. I was her roadie, but I could tell it was very difficult for Chris watching us do all the humping of her stuff while he sat and watched, we didn't mind, but he did. It was good to be together away from the farm though and to share a proud parent moment together. It was the first time he had really heard the song Chloe wrote for him and I saw a little glint in his eye as she was performing it.

The evening was about Tamara's boyfriend Karl doing his Ice Bucket Challenge. Karl has always liked to live life to the extreme and wanted to do it under a Matbro bucket full of water, so we just had to oblige. Jordan filled the large handler bucket up and Karl stood underneath while Jordan poured it on him. It was brilliant, he was absolutely drowned from head to toe and we all laughed our heads off. He nominated his parents who live up country, so hopefully passing the baton on and raising more money and awareness in the process.

Chris is beginning to acknowledge that he is struggling a bit more every day with his meals. He is constantly clearing his throat as the food gets stuck. It is quite hard for him to physically get through a meal now and it really tires him out. I think this PEG getting fitted can't come soon enough. This disease is certainly progressing and we don't like it one bit.

I forgot to mention that Chris had also had a letter from the DVLA as you have to inform them when you have MND. He hasn't driven the car since we went up to my brother's and he admitted that using the pedals is quite hard now. He actually asked me yesterday if he should tell them he can't drive anymore and I said that if he doesn't drive I doubt it makes that much difference to them. Yet another thing he loves taken away from him. I hope we can get his TR7 back on the road again soon, so that I can take him out in it. He can still thankfully drive his old Nuffield tractor and the Matbro handler.

We talked a lot about things last night and there was an acceptance, but sadness in him and it is quietly breaking my heart. It was a tough day for Chris in a lot of ways, problems with eating and having to sit by and watch Chloe and I carry heavy equipment, but it was a happy day too as we all went out together and had fun and had an even greater laugh watching Karl get wet. I think that is how it will be now, highs and lows, we just have to make sure the highs outweigh the lows.

The progression though, that makes me sad, very sad. Please stop stealing my husband MND, I don't want you to take him from me.

Here is Karl's challenge.( Excuse the understandable profanity.)


No.60.Stubborn is sometimes good.

I wake early, Chris even earlier, old habits die hard. I get his breakfast ready for when he comes in from the yard. He still likes a good breakfast, but toast and crunchy cereal are no longer on the menu. Yesterday while he was eating it he told me that his hands were much weaker. The muscle wasting in his hands is quite obvious now, there are hollow pits between his fingers and thumbs. He has been reluctant to use cutlery with thicker handles which would make gripping easier. The physio`s did suggest getting some pipe insulation and cutting it down to go around the handles of the cutlery and I think he is coming round to the idea. Someone else also suggested to me that I could open the lower seams on his overall legs and replace them with Velcro to make the legs easier to get on , but Chris was most indignant about that one. I think I`m going to have to give him time to get used to the idea. I`ve noticed the slight coughing and clearing of his throat is increasing more now during his meals. One good thing though, after upping the milkshakes again, his weight has gone back up which is good. He still eats all his meals, but it takes so long now and the physio said that even eating can be tiring for him. The things we never think of when we are well.

Being the wife I see things differently. I see the obvious practical things that will help him and I see a stubborn man who sometimes doesn`t want to face up to reality. But... that same stubborn streak is what is keeping him going. His reluctance to give in is him fighting MND`s onslaught. I guess being stubborn is a form of defence against this attacker. I do know though that he will accept things in time. He accepted the wheelchair as he knew walking too far was way too difficult now. He accepted the shower seat as he knew he could no longer stand up in the shower and I know he will accept these other things when the `normal` way of doing things become too difficult.

Being stubborn can be a good thing sometimes, but that has to be balanced up with facing reality, because being stubborn beyond belief is just cutting off your nose to spite your face. For example, using a wheelchair is like saying to MND ` You thought you`d stop me moving and getting out by taking my legs from me, but look, here I am moving, here I am getting about. YOU haven`t stopped me` so best not let MND have the last laugh.

Friday, 15 August 2014

No.59. Grief V fight.

When we first found out that Chris had this disease we were devastated, even though we had prepared ourselves for the news, nothing could ease the pain of hearing those words, `I`m sorry , you have Motor neurone Disease`, Chris and I held hands and cried. We cried for days.

We are still devastated, but after a while, for me any way, I just got so bloody angry, angry with life, angry with MND, angry at the unfairness of it all. Why Chris ? What had he done to deserve this bloody awful disease, nothing of course. It is just an evil, random thing, that apart from the few hereditary cases, just plays Russian roulette with our lives. It makes you feel helpless, what can we do? There`s no cure, no treatment baring one drug that gives you three extra months, wow we tried not to get too excited about that one. It is going to kill Chris`s motor neurones one by one until he will no longer be able to walk, talk, eat or speak, it is the cruelest of all diseases.

But do you know what? It doesn`t kill our spirit or our love, it can`t touch that and it has fired so much fight in the both of us. Chris fights to work, to keep going as long as he can, he doesn`t want to die, he wants to bloody live and I fight to do the only thing I can, to raise awareness and funds, even if it is in a small way.

The recent craze in the US for people to do this Ice bucket challenge is sweeping the world. In the US it has raised over a million dollars, if not more by now. This rare, underfunded disease, is finally being recognised. Call it MND, call it ALS, call it Lou Gehrig's disease, they are all the same disease and those with it are suddenly being given some hope, as every penny raised is a penny to towards research or a penny to help someone at grass roots level. So if you read this, share it, share it every where and help to spread awareness and apologies if this causes offence to some, but I am angry today and today MND can bloody f**k off. It might win the battle, but it`s got a fight on it`s hands first and we have our fists well and truly up !!

Thursday, 14 August 2014

No.58. Every day stuff and nostalgia.

Well our radio interview was eventually broadcast. It sounded OK and we did what was asked of us and hopefully raised a little MND awareness at the same time. I think the Spotlight interview was lost in the edit, such is life. It would have been good to raise a bit more MND awareness though.

Thankfully our T.B test was clear. If we get another clear test in 60 days, restrictions will be lifted and then the test will be annually. Other wise it's back to tests every 60 days again.

Chris keeps forgetting to take his sticks out with him, though he does use a long piece of alcathene piping out in the yard which is something. I have to help him sometimes to put his overalls on. He finds getting them over his feet really tricky. He has a chair in the porch he can sit in while putting them on which helps a bit. They talk about women's hand bags carrying everything but the kitchen sink, but Chris's overalls weigh a ton with all the stuff he carries in them.

He asked me to help him out a bit in the yard this evening. I'm not much use as a 'farmer's ' wife, lack of height and physical strength, plus an abundance of fear, don't make for a good one. I've always joked that he should get his money back on me. I was able to help lifting, just about, some hay bales and feeding them to the cattle. I noticed that Chris's upper body strength is still pretty good. He is no where near as strong as he used to be, for a skinny bloke, he used to be really strong, but even now, compared to me, he still has more strength. Being a farmer certainly is a physical job. I think that is why he has been able to carry on working. He can still heave himself up into the farm handler and the Nuffield. It is mostly his legs and core muscles that seem to be the weakest at the moment as well as his throat and mouth and neck. I think when his upper chest and shoulder deterioration catches up with everything else he won't be able to work anymore, but thankfully for now, he can get by.

It' s funny, because you do kind of get used to this, but every now and then I will really miss something, even if it is very trivial. We have a very small orchard with three old trees and one new one. It has been very neglected and it is very over grown at the moment, Sleeping Beauty would have been proud. Normally at this time of Year, Chris, the kids and I would go out there and collect apples, it's such a simple thing, but it is a little difficult for Chris to get out there now and do that, so I hacked my way through and did it on my own and it made me a little nostalgic and sad for what used to be. You just know with this disease, that some things will never ever be the same, there will be no recovery for Chris and others with MND and no cure. We just have to sit and watch MND slowly take our loved ones from us, bit, by bit.

Inspite of how it all seems, Chris still smiles, cracks jokes and is relatively happy, guess I can' t ask for much more than that. I just hope he continues to feel that way for as long as possible.

( Here is the link to our radio interview, we are on about 4 minutes in.)
 https://soundcloud.com/lesley-roberts-1/radio-cornwall-interview

No.57. Splash away the lows.


Yesteday was a rather up and down kind of day. Chris and I glued ourselves to the radio from early on as Radio Cornwall reassured me it that our short interview would be on after 7.30am, but it wasn't. It was a little disappointing, but not the end of the world.

Chris had an appointment at the GP's during the morning, to have a blood test to check his liver because he is taking Riluzole. We came home stacked high with Resource milkshakes.

We then had a mini crisis as the bulb people, who were out in the field next to the house, ploughed through our main water pipe from the meter, leaving us and the whole of the farm waterless! Luckily they got it fixed in about an hour, phew ! Around then the physio turned up with two different types of walking sticks/crutches for Chris to try. I could see he was reluctant to try either, but she left both for him to try out. It's going to be a hard habit to grasp I think.

Later on in the afternoon we decided to do our Ice Bucket Challenge, the sun had come out and the wind had died down a little, so we went for it. I made Chris wear waterproof trousers and wellies so that he wouldn't get too wet and chilled and he and I did ours together and then Chloe did hers. It was actually a lot of fun and Chloe made us laugh. I then challenged my son and his wife and they did it during the evening, I was really proud of them for that.

We were then waiting for BBC Spotlight as we were told Chris's interview would be on, again it wasn't which was a shame as it would have highlighted MND which was the most important thing to us. Never mind, that`s the way it goes sometimes.

I think the fun out weighed any slight disappointments and it was certainly a day for the memory banks.

I 've gotten to know so many new people since Chris`s diagnosis, all have been affected by MND in some way. It is a unique club that none of us wanted to be in, but once we were, we found we were all united in one goal, to raise awareness and fight for a cure and fighting in numbers is always so much better, than fighting alone. You had better watch out MND.











Tuesday, 12 August 2014

No. 56. News stuff and physio's.

Well yesterday was a weird kind of day. It started with Chris and I listening to the morning show on BBC Radio Cornwall to hear a short interview we did. They were doing an item on farmers and how they are really bad at seeing their GP's. I had posted my blog on their Twitter page which is why they contacted Chris. Because of Robin William's passing, they rightly decicated the programme to him instead, so it will be on in the morning instead. 

The next thing was the physio's visit. Chris told them about his balance getting worse and they are going to provide him with some walking sticks. I also asked about a standard wheelchair. We had been using a second hand one for Chris, but some bits started falling off, so they measured him up for one and they said it would take just over a week to be delivered, which isn't too bad a wait. He also asked about his leg braces, as they were hurting his feet and they said you could heat them up in boiling water and manipulate them a bit to adjust them, so we will try that. They help support his dropped feet. They also did the usual breathing and SATs tests. 

We had planned to do our ice bucket challenge yesterday afternoon, but not long after I had a phone call from BBC Spolight, our regional TV station. They were covering the same item as BBC Radio Cornwall and David Dixon had spoken to them about Chris. They wanted to come down and interview Chris in the afternoon. We had no idea if it would be an indoor or outdoor interview, so I though I'd better give the lounge a bit of a dust and polish. As it was they wanted to do the interview on the farm as the light is better. They also wanted to film him on a tractor, so Chris used his Nuffiled, which he could drive. The camera man wanted to film Chris by the cattle shed using a fork to push in the silage. I was a bit worried about that as I know it takes a lot of strength and balance for Chris to do that these days and I was worried he might fall. They then interviewed him and Chris's speech was slurry in places, but they said they would edit the interview with voice over shots. Chris was a bit worried about that, but I said they will probably only show a bit of him talking. He was so tired when he got in though, he looked awful. I managed to get him to rest a bit and he asked Chloe to help him mill the corn later on, a job he shouldn't really be doing, but one he has little choice in at the moment as his brother is harvesting the corn in the fields. It is quite physical and I think that is why he asked Chloe to help him.

I must stop myself worrying and fretting. There will be no corn to harvest or milling next year and no corn to mix to feed to the cattle. The transision will be over and we will have a very different farm and I know I will regrettably have a very different husband, physically anyway. I hope that hopeful, funny, brave man will still be there and that losing the ability to do the job he loves, won't pray too heavy on his mind. I do so hate MND.

No.55. (Extra post) MND affects all the family.

 Just thought I`d share this link. Our 19 year old daughter is a young singer/songwriter. She was away from home up in Brighton when we told her about her dad having MND (she knew he was having tests and wanted to know straight away). It was awful for us and even worse for her, to be apart at this time. Chris and I caught the coach up to see her the following weekend as Chris desperately needed to see her and she really needed to see her dad. It was a weekend of lots of cuddles in a hotel room. Prior to us coming up though, Chloe had to vent her emotions and she wrote this song. The lyrics are on the YouTube page. MND affects us all, we just never realised how deeply it affected Chloe at the time.

http://youtu.be/natH7M8IFss?list=UU1b1tk0CjAuuiE8Tra0ELMw

No.54. Getting on with life, getting on with MND.

Yesterday was TB testing on the farm. We really hope for a clear test this time as we have been under TB restrictions for a long time, fingers crossed. When Chris came in for lunch after the test, his speech was really bad. I asked him what he had been doing and his reply was 'Not much, just leaning.' I guess that was enough to tire him. He can't really lie about it though, his tiredness really shows in his speech when he has done too much and it is a dead giveaway.

The physio is coming today. I think Chris needs to ask about walking sticks or crutches. His balance is really bad now and he walks around the house holding on to things for support. I think we'll ask about a wheelchair too. We have a second hand one, but some bits are falling off of it.

A new fundraising idea for MND has drifted over from the US. It is the ice bucket challenge, where you pour a bucket of ice and water over your head and film it and post it to social media. Chloe and I are up for it and I think Chris is, though I`m hope he can cope with the really cold part OK. We'll see what the physio says tomorrow. Tam`s boyfriend Karl is too, should be fun!! I just hope people will donate and make it worth while. It`s good to have something positive to think about.

My eldest daughter wants to do a sky dive, I could never do that, I 'm terrified of heights ! Never been particularly athletic either. Chris is still so involved with the farm, mentally if not physically, that I 'm not sure he can get his head around fundraising ideas, though his brother did suggest a vintage tractor rally. Maybe. All the big ideas take such a lot of effort, I have such admiration for those who do it. 

There is never a good age to get MND, not for the person affected and not for their loved ones, but we always feel particularly sad for those who get it really young in their 20's and 30's, that really is cruel, I always hope they have the slow kind when I hear that. We all really do have to count our blessings.

Saturday, 9 August 2014

No. 53. Back to the positives.



I think the last blog was more about being angry than sad and I think it's pretty much OK to be angry with this disease.
Anyway, yesterday was back to being positive. We had our raffle and MND awareness stand at our village church fete and Chloe did some performing like she does every year.

The raffle did surprisingly well and we made £85 in total. I'm not sure about all the awareness info. Only one person wanted to look at it and another asked me what it was, so I'm not sure a great deal of awareness was achieved. Mind you, it was hard to miss six of us walking round with MND T shirts on and we had a last minute rush on the raffle so maybe we did. We were pleased with the money raised. 

Chris took his old Nuffield tractor down to use as a 'Guess your age' game. It is still very much a working tractor and still one Chris can drive and one that is most definitely not going in the machinery sale.

I also somehow, managed to win the whisky raffle at the fete, how perfect for my whisky loving husband. I never usually win anything, so that was a welcome surprise. Chris also won a bottle of red wine. We aren't big wine drinkers, but we had a couple of small glasses during the evening. On reflection, maybe someone with balance problems should have stuck to the one glass. Chris always pops in to say goodnight to Chloe, but he fell over as he entered her room. Luckily he didn't hurt himself ,but it was a lesson learned.

Chloe performed some covers and originals at the fete and one of them was a song we didn't know about. (Look up Chloe Fior 'Paradise' on YouTube if you would like to hear it). When she found out her dad had MND she was still up in Brighton, studying her degree at BIMM. We went up to visit her a week after, but it was really hard for her during that first week, she really needed her dad and him her. She wrote this one particular song as a way of dealing with her emotions. Chloe has a way of writing that makes you look deep, but it was very moving to know exactly how she felt, that first week after diagnosis.

On a different matter, Chris had a letter through to say his PEG would be fitted on the 27th of this month, really soon. I guess that's a good thing. He weighed himself in the morning too and he's lost 3 lb, which is not such a good thing. He still has the weight around his middle that he had gained, so I think this must be muscle loss, if it is, 3lb is pretty scary. Maybe that is why his balance is worse, perhaps it is from the core muscles.

Well yesterday ended on a good note with us all feeling we'd done something positive to fight MND. I'm under no illusion that there won't be more low days to come, but the challenge is to keep the positive days flowing too. What I said before is true. This disease does take over your life, of that there is no doubt, it's scary and unfair and very cruel, but sometimes life is cruel in lots of different ways and it is up to us how we deal with it. We have to fight it when we can and not beat our self up when we can't. This round to us MND.


No.52. Dark clouds and occasional sunshine

Sorry, the sadness struck again.

MND hangs over us like a big dark cloud.
We wake, it's there,
We eat, it's there,
We talk, it's there,
We laugh, it's there,
We cry, it's there,
We argue, it's there,
We sleep, it's there, especially then, when we snuggle up, there it is again, the constant twitching, the constant, physical reminder of MND's relentless quest to take my husband from me.
But when we laugh the sun shines for a bit, when we hug, it shines a little brighter and everyone who ever has or ever will be touched by this disease, knows the one thing that it can't take and that's the biggest and brightest thing of all, our love.

Thursday, 7 August 2014

No.51. A brush with the local media.

I had a phone call from David Dixon who works for Radio Cornwall yesterday afternoon and he said he wanted to come later on to interview Chris. The NHS are doing health checks at a farming store in Cornwall to get farmers to be more willing to see the doctor when they are unwell, as they are a pretty hardy bunch and will generally fob things off.
David had read my blog and thought Chris`s input might be helpful with this. Chris didn`t take a lot of notice of his limp at first, which had gone on for quite a few months, even when people were commenting on it. He just thought it must have been a bit of arthritis or something. It wasn`t until in February this year, when Chris had to walk up to the village at about 10pm one evening to retrieve some sheep that had gotten out, that he found that he could hardly walk up the drive, his legs felt like lead and it really scared him so I made an appointment the next day for him to see the doctor. I know there is nothing that can be done for MND, but it might have been something that could have been treated and that shouldn`t have been left so the idea was for Chris to say how important it was for farmers who get symptoms of anything, to get them checked out sooner rather than later. He interviewed me too which I wasn`t expecting, but David made us feel very at ease and both interviews were pretty short anyway. They will be included in the 6-9am Breakfast Show on Tuesday morning. Sneeze and you will probably miss it, but at least we managed to mention MND and hopefully some kind of awareness was made.
 Chris was worried that his diction wasn`t very good, but I could understand what he was saying and I`m sure everyone else will too. David said he will continue to read my blog which I thought was very kind, but he has lost a friend to MND, so his life has been touched by it too.

Chris and I are very reluctant to dip our toes into the wider world of media, both being introverted in nature, but I understand that it is a necessary evil in order to get MND awareness across. If further opportunities arise then we would have to `grow some..` as they say, as getting MND awareness out there means a great deal to both of us.

Wednesday, 6 August 2014

No.50. PEG stuff and thanks.

Yesterday was Chris`s appointment to see the gastro Doctor. It had been brought forward from September and it was another trip to Truro to see him. The first thing that surprised us was how thrilled he was and I mean he was REALLY thrilled, that Chris was coming to see him at this stage of his MND. He said so many people left it till much later and there were so many more complications. He said they wanted to do the PEGs earlier, but the neurologist and other professionals weren`t advising people to do it. We told him that all the professionals Chris had seen had told him now was the best time and he was pleased to hear that mindsets were changing. He explained about the two ways it is put in, one way is with the radiology team using X rays to guide the tube I think and the other way is the endoscopy way, where they put a tube down your throat with a camera on it. He said the latter was the best way and that Chris should also opt for a general anaesthetic as there can be aspiration problems during the sedation route with MND patients and that they (the doctors) can control the breathing better under a GA. He then said it could be done within 2 or 3 weeks which really surprised us, but he explained that they had to get all procedures done for everyone within 6 weeks these days. He then talked a bit about what it will look like. He also explained that there were two main risks with having a PEG fitted. One was infection, but it was the patient infecting themselves as some people can carry MRSA in their throat and the endoscopy going down can carry the infection down with it. They counteract this by giving antibiotics before the procedure and they also took a swab yesterday to see if Chris is carrying it in his throat. If he was he said they can do something at the time to knock the bacteria out during the process. The other risk is bleeding, which can happen if putting the PEG in is left till much later on and the patient is malnourished. He said their Vitamin K levels can be low and this vitamin helps with blood clotting. Chris is still getting a very varied diet so hopefully that won`t be a problem, but they took some bloods to check that anyway. Phew!! such a lot to take it, writing this all down helps keep all that info in the head. Before Chris left the doctor also said that he would also stay in over night, just to make sure the tube was flushing OK and we would both have to learn how to use it. One thing that made me smile though and I forgot to say that the doctor was Scottish, was that he asked Chris about his alcohol consumption and Chris said he liked a large whisky at the weekend. I saw the doctor smile and he said a large whisky was perfectly acceptable and Chris was pretty pleased with that.

The biggest annoyance when visiting the hospital though, apart from the hour it takes to get there, is the cost of the car park. Last weeks visits cost over £8 altogether and today it was over £5. Those charges are way too high. I feel sorry for people who have to visit hospital daily for treatment or visit people. Even a weekly ticket is over £15. Still, I digress. We have to use the wheelchair to get to the hospital as it is too far to walk for Chris, but on the way home we wanted to stop off at the Range to buy a couple of bits. (I`m making up a hamper of Cornish goodies for a raffle for our MND stand on Saturday.) Chris didn`t want to use the wheelchair again, so we took a tip from his MND nurse and he used a shopping trolley as a giant walking frame to support him as he went round. It worked pretty well and made Chris feel `normal` again.

I was very humbled yesterday at some of the comments people have made about my Blog. I never really know what to say as they are so unexpected. I`m just this shy person who wouldn`t normally say boo to a goose, but this disease, as bad as it is, does have a way of firing people up including me. It makes you want to do something positive with something that is pretty low on any kind of positives. Raising awareness and fund raising are two big ones within all our grasps. I just write what I feel, it isn`t hard, or brave for me to do this and sometimes I think I write too much, but I appreciate every kind word that I`ve read so thank you. MND was the last thing we would ever have wanted to enter our lives, but it has also allowed me to get to know some wonderful people because of it and if I ever get my husband into social media (I`m trying) then he can get to know them too.

Tuesday, 5 August 2014

No.49. Thoughts for today, thoughts for the future.

I posted my Blog on the BBC Radio Cornwall Twitter page yesterday and was suprised when someone tweeted me back and asked me to phone them. Basically they are trying to do an item, along with Cornwall Council, about how farmers are reluctant to visit their Doctor when they feel unwell, like a lot of men I would imagine. This man was also interested in MND and has already done some fundraising himself. He wanted to know if Chris would be prepared to do a short 2 minute interview to say how important it was to see your GP if you were unwell. Of course I said I was sure that would be OK as long as MND could be highlighted and Chris, although quite a shy man, said he wouldn't mind.This man said he would phone me back at the end of the week. We`ll see how it goes. Any mention of MND on a local radio station has to be a good thing I think.

When I write about the things that are happening to Chris, it is tough to accept the affect this disease is having on him, but then I read about people who are much further on with this dreadful disease, going through the stages that I would rather not think about and I realise that we are both grateful that he is not anywhere near there yet. The future is a scary place and I only hope that Chris and I will be as brave and have the strength that some people have. At the moment he wants to fight till he can fight no more, but until he reaches those awful later stages, who knows.

It also got me thinking about what causes it. I know no one really knows, but again and again I hear of people who were sporty getting it and our MND nurse telling us that she has a lot of farmers on her books, also people with active lifestyles, well it has to make you think doesn`t it ? She also said almost all of them had some kind of a traumatic incident happen to them, like getting kicked by a cow for example. Chris has lost teeth in the past when he was kicked by a cow and more recently he got knocked unconscious when he was kicked in the face by his horse. He ended up with 18 stitches to repair the hole in his upper lip. Again it makes you think. Chris also became really worried when he was first diagnosed as he spilt some chemicals on his hands last summer, when he was usually always so careful and he was convinced he had poisoned himself and the guilt sent him into a depression The MND nurse told him that he would have had MND long before then. She said that you can have it for quite a long time before it shows actual physical signs. Chris spent weeks beating himself up about how he got this awful disease and no matter how much I told him that it wasn`t his fault, it didn`t stop him fretting. He has come to terms with it now, but it is only natural to want to know the why, to know the cause, why me, all that kind of stuff. I was so relieved when he accepted things a bit more as the `beating himself up` was doing him more harm at the time than the MND. 

It just shows what a powerful tool the brain is. It can give us strength and fight, but it can just as easily take it away and I`m sure for every person who is brave and strong fighting this disease, there are as many who, for what ever reason, are unable to find that strength. My heart goes out to everyone fighting this disease today, the strong and especially the not so strong and also to all those who have had to watch their loved ones go through this cruellest of diseases. I also hope that I can stay strong too for Chris and my family. I`ve never really been a brave person, here`s hoping I can become one, as I think I will need to be.

Monday, 4 August 2014

No.48. Progression doesn`t equal progress.

Chris`s speech had not improved by yesterday morning, so I guess we can`t blame the tiredness, though he said it was because he got out of breath rushing to get in for breakfast ( yes, he is still up at 5.30am! ). He did also mention that while moving cattle from one field to another ( I'm hoping he was on a tractor) he tried calling them, usually they will follow when called, but his voice was so weak that they couldn't hear him and they are still in the original field as I write. Maybe a mega phone is in order. The things this disease does.

 I also noticed too that if he isn`t supporting himself against a wall or a chair to stay upright, he stands in a `skiing` pose to keep his balance. We did giggle about that, still trying to make light of things, but I guess it is just the MND progressing. He seems to walk a little better if he can get the momentum going, it`s a bit like riding a bike. When the bike is in motion you can balance it, but as soon as it stops, without some kind of stability, it falls over. It never pays to get too complacent with this disease. It slowly chips away at your motor neurones, they are forever under attack. You can chip away at a lump of rock for a while before it actually splits and is damaged. I think it is the same with MND. Chip, chip , chip, twitch, twitch , twitch, it`s relentless.

Chris also had a phone call from the hospital to say that his appointment to see the gastrologist has been brought forward from September to this Wednesday, so much for a week with out appointments, but I guess they must have had a cancellation or something. Best get that particular MND journey under way ASAP I suppose. It`s such a big step, but all the medical professionals say it is the right one, so I think it is one that Chris is reluctantly going to have to take, the first step to having a stomach peg fitted. I bloody hate you MND !!

Sunday, 3 August 2014

No.47. Trying to be thankful .

That may seem a strange title, especially as it is quite easy and justified to feel sad and hard done by with everything this disease throws at you. MND is a terrible thing, make no mistake about that. It is a guaranteed death sentence and I would do anything if it meant my husband didn`t have to go through this MND journey, but...we also try our very best to count our blessings.

We`ve been married for nearly 20 years, but we've known each other since we were 19. We didn`t fall in love and marry till our mid 30`s and although marrying into farming was a steep learning curve for this townie, and there have been some tough times in the farming world almost from the start of our marriage ,we've supported each other as best we could and if anything, this disease has brought us even closer together and we are very thankful for that.

Between us we have three wonderful, now grown up, children who are bright and funny and keep us well and truly grounded and we are very proud of all of them. Chris became a willing father to my two eldest children when they were both very young and they adore him. When we had Chloe it made our family complete. We are very thankful for them.

We live in a beautiful place in a beautiful county and I personally have always felt blessed to live here. The family have juggled things around so that the farm will stay in the wider family and Chris and I will eventually move into his father`s bungalow on the farm, so we won`t ever have to leave his beloved Gwarth-an-drea. I know some people with MND have to struggle with accommodation that may not necessarily be suitable for someone with disabilities and we are grateful that where ever we live there will be space to adapt as time goes on. We are very thankful for our home and the support of our families.

Christopher has spent his life working with cattle and farming, doing a job he loves. At times it has taken up almost every hour of everyday, but it was and still is his passion. Even at it`s toughest with BSE, Foot and mouth and recurring TB on the farm, he has never, ever considered giving up, though there were times when I felt differently, but that is another story. The thing is not everyone gets a chance to do a job they love and I know Chris is very thankful for that.
 
We also laugh a lot together, as a couple and as a family. We find the humour in everything , especially MND and when Chris came in last night, he could hardly string two words together at times and we laughed about it and that strangely, manages to take the sting out of it. We are thankful that we can still smile.

Sometimes when we feel low we do cry together and we hug and we grieve momentarily, but those moments pass and then we sit back and try to cherish each day that we have. We then try to be thankful for the things we do have and not focus too much on the things we are going to lose until they happen. This is far from easy, we are only human, but we are not letting this damn disease have all it`s own way. It's hard sometimes, but focusing on what we do have, we'll it helps to stop MND dragging us down when the days when we don' t feel thankful hit.

Friday, 1 August 2014

No.46. Doctors again.

Yesterday was another trip to Truro to see the neurologist. We take the wheelchair as we still haven't got the blue card sorted yet and the car park is a bit too far for Chris to walk these days.

I suppose the visits to see the neurologist are just a checking in and catch up really as there isn't any more that they can do. It's a chance to ask questions too. Chris still feels like he is being lazy by using the wheelchair and mobility scooter and that it might be making him worse, but the Doctor told him that you can' t 'exercise' MND better and that all he would do if he made himself walk was to exhaust himself and that using all the tools/ equipment available to him was a good idea. I think that reassured him a bit.

The Doctor also asked him how he was getting on with the Riluzole. Chris said he had no idea if it was making any difference or not ( it only gives him 3 extra months ), but the Doctor said he should keep taking it as long as he had no side effects, so he will.

I also asked if the progression followed a definite line of decline, or if it could suddenly speed up and he said that it generally followed a straight line of decline, steeper of shallower, everyone was different. I think Chris may be luckier than some as I don't think his decline is a steep one. He did tell the Doctor how unsteady he is on his feet now and he said it was because the core muscles are getting weaker and Chris also felt his dropped feet were much weaker and that was also making driving and pressing on the pedals much harder too. I've noticed he has been more willing for me to drive, I guess that is why.

I think we have a breather from appointments for a couple of weeks. People say to just try and get on with life, But MND just takes over and consumes everything. There are always constant reminders of it. I cannot believe that in January Chris just had a bit of a limp and now we are here with a diagnosis of MND. I still pinch myself everyday as even now I just don't want to believe it is true. 

No.45. The farm still beckons.

Yesterday was a busy day with family down, sorting out farm stuff. We have had to dramatically rethink how we farm now that Chris has MND. It is in transition at the moment and one of the things that has to be done is to auction off a lot of the farm machinery which is now no longer needed. It will be held at the end of August and apparently these days they are advertised on line and that can create a lot of interest. My sister-in-law suggested that we have a table set up to raise MND awareness with one of their collecting buckets. We thought that was a brilliant idea. There should be a lot of farmers there with cash in their pockets and hopefully we will be able to persuade them to part with some of it in for a good cause. I also made up some flyers saying why we were having the sale and explaining what MND was and I thought we could hand them out as they come in. We have already put that the sale was due to ill health and I am sure some people will be there out of curiosity anyway. We might as well make the most of a captive audience. 

It is good to see a harvest coming in too. It will probably be the last one we do here at Gwarth-an-drea, which is quite sad really, though we have had a couple of disastrous harvests in the last few years due to bad weather and there were times when we wondered what was the point. At least the weather is on our side for once.

Chris is doing what he can to help, he is still able to drive the farm handlers so he is pushing the corn up after it has been tipped up from the trailers. Thankfully we have some casual staff who come and help to drive tractors when we need it.

This damn disease has had such reprocussions for us. It hasn't just affected Chris, myself and the kids, it has had a knock on affect on the business and Chris's extended family too and it has also changed their lives in ways they probably would rather it hadn't. I have to say we are so grateful though for the support from all of them. It has made coping with this nightmare a little easier.

Today is another trip to the hospital in Truro. Chris has a check up with his neurologist. There is progression with the MND, but thankfully at the moment it is not tearing along at break neck speed and for that we are very grateful.