No.44.The breath of life.

Yesterday was another trip to the RCH in Truro as Chris had to see the respiratory consultant. Breathing muscles can get affected as time goes on with MND, so it is important to have regular check ups. We had no idea what to expect and one of the tests was a little unpleasant. The nurse explained to Chris that they had to take blood from the artery in the wrist. This is to check the oxygen and carbon dioxide levels in his blood. Well this proved not to be an easy task and her first attempt at poking the needle in his wrist for about a minute didn`t work, or the the second attempt either. Chris never said a word, but his face spoke volumes, I think it was a little bit painful!! She then asked if he minded is she got the consultant in as he had a knack with tricky patients, to which Chris asked `Who is the more experienced!!` Luckily the consultant did have the knack, he kinked the needle slightly and yay!! out popped some blood.

The other two tests were much easier, the breathing into tubes tests and a chest Xray. The consultant then examined him. He explained that when the chest muscles don`t work properly they don`t get rid of carbon dioxide as efficiently, especially at night and this can cause a lot of problems like daytime tiredness and headaches on waking. When this happens they can use something called `Non Invasive Ventilation`, which is a mask attached to a machine that you use at night. He said Chris`s chest muscles were slightly weaker than they should be, but at the moment all the tests were normal, which is really good. He has to go back every two months for regular check ups.

I`ve read that before NIV was used, life expectancy for MND patients was a lot shorter as respiratory failure was brought on much sooner, it was a choice though and some people prefer not to use it. At the moment Chris has said he would, at the moment he wants to stay alive for as long as he can.

We then popped up to see Chris`s sister, who lives not too far from Truro and had a lovely meal with them. It also meant Chris was able to see his other sister too who is down on holiday.

Well yesterday`s low mood passed almost as soon as it came. It kind of hits like a wave out of the blue when it happens and then it`s gone. People have told me that this is normal and I guess that all I can do when it happens is to literally ride the wave .

No.43. Hitting lows

Every now and then I just feel so over whelmed with it all and so bloody guilty. I hear of so many brave people out there with MND, so many others touched by it doing amazing things to raise awareness and fundraise and it makes me feel pretty useless. I know those thoughts are stupid, but going with the flow, that`s just how I feel today.

I know there is nothing I can do to halt this disease`s progress in Chris, all I can do is just be there for him. It`s like I`m standing infront of him, trying to fight off this demon, but I also know that I don`t stand a flipping chance against it and neither does he. I want to do more to raise awareness or fundraise, but sometimes, just sometimes, I just want to hide from it all rather that be strong and fight. I don`t want to face up to it, I want to pretend this is just a bad dream and when I feel like that , doing positive stuff goes right out of the window.

I know this`ll pass, I know I`ll get the fight back and I know it`s probably normal to wallow sometimes, but seeing Chris just getting on with life and being so brave, well it makes me feel just a little selfish.

Tomorrow MND will still be there, but so will we, I`ll do my best to regroup my thoughts and fight on.

No.42. One for the memory bank.

Chris and I arrived home safely from our weekend away after first dropping Chloe off in Brighton, she will catch the coach back home, but at least she will only have to do the 12hr trip one way this time. It took us nine hours in total, including breaks and I drove from Portsmouth (Chris did the first couple of hours). I was quite chuffed with myself as I have never driven outside of Cornwall before. I was terrified of the motorways as we don`t get much chance to practice on them down our way, I used to let Chris do all the `up country` driving when he was well. Times have changed and I have had to come out of my comfort zone, but I think it did me good and Chris got to rest for a change.

I coped getting the scooter in and out of the car, the ramp works a treat and Chris soon got the hang of negotiating pedestrians in Horsham`s shopping precinct. We taxied to my brother`s place where they were holding a surprise party for his eldest daughter. It was lovely to catch up with the family as we don`t see each other very often. There was lots of laughter, especially as Chloe got a little tipsy and my brother had a good bottle of `Jack Daniels` on hand for Chris. There was also plenty of chat and a few tears and a good time was had by all. It was one of those occasions to be added to the memory bank and it was one party where MND was not invited.

No.41.Time out.

Today we are going away for a couple of days. It`ll be a long journey from the south of Cornwall, but it will be worth it when we get there. Time out from the real world for a short while. It will give us a chance to try out the new car too. The new ramp arrived yesterday, just in time and we managed to get the mobility scooter in OK. I think we can cope with that until we need to move on to a full blown WAV car.

Chris`s speech was worse yesterday than it has been. Could be tiredness? could be the heat? or it could just be progression. He spent way too long out on the farm yesterday too without eating and I was a little cross with him. I know he just wants to help his brother, but I just want to protect him. I hope we can put MND out of our minds for a couple of  days at least, the use of a mobility scooter will be a bit of an obvious reminder though, but we won`t let it spoil our fun. I`m not writing any blogs while we are away, I will write again when we get back.

No.40. All about the fundraising.

Thought I`d write todays blog about how important fund raising is and how we are desperately trying to do our bit.

Firstly MND and the MNDA gets NO GOVERNMENT FUNDING for research into finding a cure, not a single penny, so donations are the only hope those with MND have.

It is quite hard sometimes, for me anyway, to think of fundraising ideas outside of the bigger organised events that are all so far away. I do have a serious lack of imagination on that front.

The poster above shows what the money raised by donations can fund, apart from the obvious one of research. It shows how donations actually help people with MND directly. I`ve just set up a Fighting Fund for Chris called `Team Roberts fighting MND` to record any funds raised in his name. (It doesn`t go direct to him in case you were wondering), so I am desperately thinking of ideas to raise some more funds.

We raised a very unexpected £625 with out Bake it day event and I`ve been trying to think of other fund raising ideas. The village church have said we can set up an awareness stall to raise some money at their annual fete. I`ll ask if I can do a little raffle too and I have been thinking about organising a farm walk, maybe incorporating the `Walk to D`feet` events. We have done a farm walk before and it was well supported, so that may be an idea. All small scale stuff , but every little helps.

I used to paint a bit in oils too , nothing fancy, but I thought I might put a couple I have here up for auction on EBay. I`m going to research a bit more on that front, but we`ll see. Someone might like them.

I am in awe of the people who do the marathons, sky dives and swims, I could truly never do anything like that, so I`ll try and think of ideas more within my abilities. I`m pretty good at a mean cake and a cuppa, so maybe I should stick to that.

However funds are raised though, every amount, no matter how small, is so important. Lives depend on it. The MND warriors of today may not benefit from any future cure, but they benefit in other ways. The MND association can provide them with specialist equipment and other things like telephone support for those who need it.

Charities like Cancer research UK raise around £500 million pounds a year, yes, it is an important charity and yes far more people get cancer than MND, but the costs of research are probably very similar I would imagine and MND only raises around £3 million pounds a year, quite a difference, so you can see why every penny helps. The fight to find a cure is global and the fact that the fight has been going on for 75 years shows how tough finding a cause and a cure is for this disease. There are glimmers of hope on the horizon, probably too late for people like Chris, but it gives hope to future generations who may get MND.

So, fund raising is REALLY important, hence raising awareness constantly and I shall get my thinking cap on for our next fundraising idea.

No.39. Practical changes and unwanted changes.

Yesterday Chris and I decided we`d have a go, well I would anyway, at getting the mobility scooter into the Kangoo. It was important that I was able do it. It came apart easily enough, but I am only tiny, 4` 10" and the individual parts were still quite heavy to lift into the boot, so we weren`t sure that was the best option. The scooter could fit complete with the back bench seat down with room left for suitcases and maybe the wheelchair too, but we would need a ramp so after searching on line we ordered one. Hopefully that will work OK, will update you on that one. It was so much easier when boots had to fit just shopping, prams and dogs !!

It takes an awfully long time for Chris to eat a meal these days. It takes about 2hrs to eat a couple of ham rolls and two small pieces of cake. OK, a certain amount of that time is taken up with him nodding off, but the actual act of eating is slow too and quite tiring in itself. I think if he didn`t love his food so much or wasn`t  so determined, he may have given up halfway through. I guess that is another reason why people lose weight, some people must give up eating their meal because it is so tiring. He joked that when he has the peg fitted he can whip his meal in quick and then get back out to work. That`s Chris, forever having a laugh and seeing the positive.

It is quite hard for me to watch Chris get ready to go out on the farm. He has to lean against the wall to put on his overalls because he can`t balance and putting his work boots on is a slow process too. The control freak in me wants to help him, but he, quite rightly, wants to do things for himself. If he shows signs of frustration it is very subtle, I`ve yet to see him get angry over this. I`m not sure how he keeps up this positive attitude. I bought him a pair of new shoes yesterday too that have Velcro straps, now Chris is a proud man and you would have thought he had been an army man the way he keeps his good shoes so clean and shiny and I thought he would really object to these new ones, but he actually likes them, testament to how hard it is now for him to do up a pair of laces .

It is so hard watching someone you love go through this and knowing there is much worse to come doesn`t bare thinking about, it is so cruel and unfair. How can this be happening to my Chris? How the hell did this God damn awful disease ever come about? I pray that there will be a cure one day so that future generations won`t have to go through this nightmare of a disease.

No.38. Thanks to those.....

When Chris was first diagnosed it was the worst thing ever, even though we had prepared ourselves that it might be MND. You feel sick to your stomach and lost, embarking on one never ending nightmare. The one thing I soon discovered though was that Chris wasn`t alone, that there were many others out there, other MND warriors, fighting their own battles.

I also noticed quite quickly, via social media, that there were a lot of people who had been touched by MND in some way, busily spending their weekends fundraising in any way they can. There are others who constantly raise MND awareness and are there for support.

Yesterday was one example, a group of 22 brave people swam from the Isle of Wight to the mainland along with a group of kayaker`s. They did it solely to raise money for MND in the names of many who live with MND and many who have died from it, MND warriors and MND angels.

I just want to say thank you to them and all the other people who run marathons, sky dive, do 100k walks, have cake stalls and what ever else they can think of to raise money. My husband is grateful, we are grateful, they are all unsung heroes. It is people like them that give those with MND some kind of hope as there is no government funding for research into the causes or to find a cure. Without these amazing fundraisers and those that raise MND awareness, there would be no research, there would be no searching for a cure and then we would really be lost.

THANK YOU SO MUCH !

No.37. The tiredness of MND.

MND can make you very tired. I can only speak from our experience so far, but I can`t imagine that it gets any better. This is caused by the muscle wasting that is continuing slowly all the time. The less muscle mass you have the harder the muscle that is left has to work. This doesn`t just affect things like walking and standing, but also the voice and the swallow.

We have also been told that the muscle twitching, (festiculations) can do that too. All of Chris`s muscles twitch 24/7, constantly working and burning energy. The person with MND can find it hard to keep weight on, partly due to the muscle loss and partly due to the extra exertion it takes just to move around. Chris`s little jaunt on Saturday with his TR 7 left him so tired and he was still really tired yesterday, even though he was fighting it. It showed in his speech and when he fell asleep constantly during his Sunday roast, well that was a pretty good sign too.

The hardest thing for him to do is to do less and rest more. He wants to help on the farm, but recognising when enough is enough, that is the hard part for him. I can nag, but the reality is he will keep going for as long as he can, while I just wait and worry. I become over  protective and Chris does what he always does, he just smiles and says he`s OK. The mind is more than willing, but the body just isn`t having any of it. Stop sucking the life out of him MND!

No.36. No going back.

                            This was Chris last summer, having his lunch during hay making.

What a difference a year makes. This time last summer Chris was working on the farm with no signs of MND. Looking back he was always very tired, but I put that down to the long hours he worked. There were no other signs of there being anything wrong.

Last year we were making silage and harvesting barley in the late summer to feed the cattle in the winter and to provide their bedding. This summer some of the fields that grew corn or grass have been rented out to the daffodil growers as it is no longer feasible to farm that way any more. Chris can no longer work like he did. Last summer we were rearing suckler calves and keeping them until they were finished, this year we are having to sell them in the autumn as stores as we won`t have the feed or man power to keep them over the winter.

Last year Chris could walk any where on the farm (250 acres give or take) checking cattle. This morning he stood watching some friends who took the axle off his TR7 to repair it for him and that short time of standing up meant he could barely speak at dinner time and was exhausted.

We are lucky because we can find other ways to make a living with the farm, but because of MND we have had to completely change the way we do it. It doesn`t just affect the person who has it either, it has a ripple effect touching every one who knows that person. In our case it was impossible for Chris`s brother to manage the farm on his own and employing somone who would or could work the hours Chris did, well that wasn`t financially viable. The only way to survive was to change.
MND must affect everyone who has it and their families in some kind of way,  not just the disease itself, but the repercussions of it. It changes lives in the short term and it changes lives forever.

With MND there is no halting it and no reversing it. Once started, its journey is like a runaway train, you are just never sure when it will eventually derail you.

With MND there is no going back.

No.35. Moving on and feeling low.

Yesterday was a bit of a sad day. We went to pick up the Kangoo and dropped off Tizzy, our Clio. Chris loved that car, he really didn`t want to sell it, but needs must. He said it was the first time he ever bought a car that he didn`t really want. He even went and kissed Tizzy goodbye as we left the car place, much to the amusement of the salesman. It was a sad moving on for Chris.

I don`t know why, maybe it was buying the new car and all the talk about the assisted dying bill everywhere, but as the day wore on I found myself wanting to avoid anything that was reminding me of MND, especially on social media. I usually find comfort in knowing we are not alone, but it just wasn`t helping. I slipped into a low period and suddenly saw myself alone in the future without Chris. He always seems happy and I asked him why and he said it was because he had me and the kids, but he did admit that little things like seeing his sister teach her grandchildren to ride on our little pony Pirate, who now lives on their farm, made him a little sad, as it was one of those things he had hoped to do in the future with his own grandchildren one day. He didn`t dwell on that too long though, he mostly concentrates on the here and now. Thoughts on what he will go though drifted back into my head too, but we talked a while about things and then moved back to the present, locking those thoughts away till the next time they pop into our heads.

Chris did tell me a little story about something that happened yesterday that made him smile though. He had to go to a funeral of a fellow farmer he knew with his brother. Chris took a walking stick with him, the type that has two handles that fold down to make a seat, just in case he had a problem finding a proper seat, as he can`t stand up for too long. When Chris walked into the Wake to get a bite to eat, this lovely old lady offered him her seat, which he had to take as he really needed to sit down properly. He said thank you, but he thought it should have been the other way round and he should have been offering her a seat. He was touched by her kindness though and then he asked her if she would like to sit on his knee and she just giggled and said no thanks, but I think maybe Chris brightened her day too.

Like everything in life, all the bad stuff floats to the top, like seeing nothing but gloom and doom everywhere, especially on the news, but if you are prepared to dig deep enough, you`ll find a lot of good people and a lot good things going on too and that is the best thing for lifting the spirits. MND isn`t going away, but we are trying our very best to rise above it and not let it drag us down too much. Here`s to a better day today.

No.34. Acceptance.

I`m not sure if it is because we are getting used to things, but yesterday sort of felt relatively OK. It had been a busy day on the farm for Chris sorting out business stuff with the family and cattle to sell. It`s weird because even though he didn`t get to rest like he should, which showed in his very slurry speech and even though he was more prone to stumble because he was over tired, yesterday just felt bizarrely normal. Even pureeing the baked beans to go with Chris`s tea didn`t seem out of place. It`s a sort of calm in this slow rumbling storm that is MND or maybe it`s just that true acceptance has arrived at last.

*Did a thing for me yesterday, I joined a Weight Watchers club. I do have some choice in my health out come, unlike Chris.* 

No.33.The new normality.

Yesterday Chris went to the Doctor`s Surgery to have a blood test. He is on Riluzole, the only treatment there is for MND. It gives people with it another 3 months. Not long you may think, but I`ve read it can delay the last stage , respiratory problems, for 3 months and I guess that is better than nothing.  Chris has to try what there is I suppose, though I think some people don`t bother with it, it`s a personal choice. The only problem is that it can affect the liver, hence the blood tests. I believe he has to have a test for the first 3 months and then at regular intervals after. He hasn`t had any side effects from taking this drug, so hopefully the results will be OK. We also picked up some other medication for him, and 28 bottles of Resource milk shake to top up his calories. I have to say Chris has gained some weight which is good, so he has a buffer. He is still very slim though, always has been.

Last evening Chris had to go to a Parish Council meeting as he is a parish Councillor . He doesn`t want to give that up yet and nor should he, though he has always been a quiet participant anyway. He said he now represents the silent majority, that`s my Chris, always seeing the funny side of everything. He was especially looking forward to going up there on his mobility scooter, it`s only a mile away through the village, he used to walk, but it came to rain and he had to drive instead, maybe next time Chris.

This is all starting to become the new normal, I wish it wasn`t, but it is. Chris insisted that he wanted Weetabix with his breakfast again today, but again he choked on it. I told him that he will just have to accept that there are some things he just can`t eat now, so his breakfast will have to include something else, that will have to be the new normal. I used to like to paint, but since Chris`s diagnosis I just didn`t want too. I couldn`t concentrate and I felt that if I painted when he was in that I was wasting precious time with him. At the same time I have also been told that I must make time for me too. Today I actually felt like painting again ,so I shall do a little bit I think. That and my favourite music is the best escapism from this nightmare for me. For Chris it is to work and long may he be able too. I think it is kind of important the old normal and the new normal converge a bit. We can`t let MND have all it`s own way.

I`ve told some people locally about my blog, it does feel easier sharing this with people that I don`t know very well and slightly more awkward with those that I do, but I think it will stop people wondering and speculating how Chris is. That`s village life, you can`t keep much from people, but at the same time they are an amazing support and raising MND awareness counts just as much here locally too.

No.32.Why do I write this ?

I was never quite sure about sharing my personal thoughts, everytime I write I do have a few doubts about whether it`s the right thing to do, but anyway, here`s why.

1) Firstly I write it as a personal diary, as I want to remember every second of what this disease is doing and is going to do to my husband. Not for any morbid kind of reason, but because I don`t want to forget, ever. If I forget I might give up the fight to keep raising awareness or to fund raise and I never want that to happen. Plus, I have the memory of a goldfish!

2) I want it to be a factual, documented log of the progress of Chris`s experience with MND.

3) I want it to be an easier way to keep friends and family informed. I don`t mind telling people about what is happening to Chris, but sometimes isn`t always easy to talk about it, so it`s a way of keeping them up to date without them feeling awkward about asking us how Chris is.

4) It is cathartic for me to write about it. I `m not trying to be witty or brave .I am just expressing my thoughts and writing in the moment.

5) I have been told that it has been helpful to a few people who have felt alone with this disease and it helps them to know someone else understands what they are going through. As I`ve said before, I never thought anyone one would read it barring family and close friends.  Because it is a relatively rare disease, having MND can seem very lonely to the MND warrior and their family. It must have been particularly lonely before the days of social media and if sharing our experience helps just one person who reads it , then I guess sharing my thoughts is worth it.

6) Mostly I write because I am compelled to, because I want to raise awareness in a way that I feel I can. I can`t run a marathon or jump from a plane, I trip over my feet and trip over my tongue in equal measure in social situations, but for some reason I am able to express all our experiences in the written word. People have said it is brave. It`s not brave at all. There is nothing brave, for me anyway, in typing words on a screen. Those living life with MND, knowing the inevitability of it all, those are the brave ones.

No.31. MND is always there.

The physios came today (there`s two as one is a student). I`m not sure if it is the same everywhere, but they come and see Chris once a month. They brought another set of leg  braces with them. Chris has one set in his wellies and these other ones are for `best`. He finds them comfortable and they help to support his dropped feet which is good. They also get him to blow into this little gadget to check his lung function. I think that`s because later on his chest muscles will get weak and also choking might mean him inhaling something and he might get an infection. Thankfully at the moment his lungs are in good health. They also asked Chris how he was physically, he said he was the same, but I had to step in on that one. When he comes in from the yard now, he works his way around the room holding on to things, I joke that it is very `ape` like. Also, if I cuddle him when he is standing up, I can feel him start to collapse, so standing in one spot is getting harder. At least the mobility scooter is helping him get round the yard. They also brought a tap turner to help Chris with the taps,which he now finds tricky, but it didn`t fit our taps. I`m sure we can find something else that will work with ours though. They also showed Chris how to do the Heimlich maneuver on himself in case he chokes when I`m not around. That is a scary thought! On that point the speech therapist phoned and she said she would contact Chris`s GP to get the referral process started for the stomach peg. Reality bites again.

Gosh, MND just seems to have taken over our lives in so many ways. People tell me not to think too far ahead, to live in the moment, easier said than done, for me any way, I am one of life`s worriers. The people that come into our lives to help Chris, are a constant reminder that he has MND. The changes that are happening to him bit by bit remind us he has MND. Tomorrow he has to have a blood test because he has MND, on Friday we pick up our new car which we had to change because Chris has MND. I don`t even want to imagine what it is like for those MND warriors farther on in this journey.`

Thankfully Chris is making the most of his life and just getting on with it as best he can. He is much braver and stronger than I am. In spite of all this though and in spite of myself, Chris and I now spend some quality time together, just being normal, having fun and laughing a lot. Those moments are precious moments and we both look at life now in a different light. petty things don`t matter so much. So sitting with a glass of malt and watching rubbish TV, like we did tonight, well that was just a teeny bit of heaven.

No.30.Sometimes it`s hard to swallow.

As much as we try to get on with life, MND is always looking over our shoulder. I`ve noticed the past week that Chris is choking a little more often. One of the things he choked on was Weetabix, which I mentioned before. The dietician and speech therapist said that it was a good choice of cereal to eat, but maybe it isn`t for Chris. I bought a box of Ready Brek today, which Chris didn`t really approve of, but I thought it might be worth a try for him. The other things were baked beans, and it turns out that they were on the list of foods to avoid, so maybe they will be off the menu now. I think he can live with that. He doesn`t choke all the time, but when he does, it is a bit scary.

Chris was planning to tell the speech therapist in September that he wanted to be referred to have a peg fitted (the tube that feeds you through the tummy wall), but maybe we`ll have to see if he needs to be referred sooner. That is freaking Chris out a bit and I understand why, but it needs to be done before he needs it and while he is still reasonably well. Of course he doesn`t want it, who would, but he knows it is for the best. It is a big step to take. We just aren`t sure how long the referral to surgery will take and the progress of this disease is a little unpredictable. I guess the speech therapist can advise us on that.

 I have no idea how Chris will cope in the future when he can`t eat orally at all, I can`t imagine that, never to have food in your mouth or be able to chew or swallow it. Maybe that won`t fully happen, I don`t know, we are still learning about this. It is such a cruel disease. It happens because the muscles waste in the tongue, mouth and throat and Chris will eventually lose the strength to swallow. This is why his speech is affected too. I guess there is a transition phase of eating soft foods first. The speech therapist said thicker drinks are better too. I never knew speech therapists dealt with stuff like this, I just thought they helped with his actual speech. We stupidly thought, when he was referred to one, that they would be able to help make his speech clearer, but of course we now know that the damage is irreparable. The speech therapist is there to monitor his speech and swallow and inform him about things like the peg feeding and the types of technology to help with communication when the need arises. This has been a steep learning curve for sure.

So much to learn, that we`d rather not know, so much to face that we would rather not face.

 One of the reasons I am so open about what is happening to my husband is to get the facts of what this disease does out there, to educate others as we go through this, those who have no knowledge of what MND does. It isn`t always easy to be so frank and I question what I am doing every time I write, but I just have to hope that it will help a little bit to get the MND awareness message across.


*I wanted to add the link here for the Solent Swim which includes a short video by Ian Pratt, a fellow MND warrior. That is what people who have MND should call them themselves, as many already do, because they are fighting the battle of their lives and for their lives. As yet it is not a battle they will win, but they will have done their best and when they can fight no more they will become MND angels. This swim is for many MND warriors and MND angels and is raising money in their names. Please donate if you can.*

 https://www.facebook.com/photo.php?v=684690268292079

No.29. `Can do` versus `Can`t do`.

I suppose it is easy for any of us to dwell on the things we can`t do , rather than focus on what we can. I know it is hard for Chris sometimes, getting frustrated over the things he can`t do, but today it was all about what he can do.
I have been lopping down a very over grown hedge for quite a few weeks with the help of Chloe. We accumulated huge piles of hedge trimmings and brambles. Today I used `man power` to drag out the branches and trimmings into the drive and Chris used ` horse power` to pick them up and haul them away to be dumped. I can`t drive these big machines, he can, he can`t do the physical hauling, I can, we worked as a team, both doing what we do best. It was really nice to work together this way doing pretty normal stuff, a good one for my memory bank and another `up yours` MND day.
 Chris did what he was good at, it was something he can still do and it`s something he still does everyday, out on the farm. I know it made him feel good to help me too. It doesn`t take away the frustration of the things he can`t do, but concentrating on the skills he can still use, well it`s good for his soul, it makes him feel `normal`. I do know how this awful disease will go, but for now it`s good for us both to remember all the things he can do instead of thinking about what he can`t.

(Suddenly started thinking about the future when I lay in bed last night, sometimes it`s hard to get those thoughts out of your head. I will be there every step of the way with Chris, but I hope I don`t let him down. Such a selfish thought to have, thinking about me and not him. Thankfully I locked those thoughts away again and dropped off to sleep.)

No.28. Knee jerk reactions and natural reactions.

When Chris was first diagnosed, the consultant told Chris not to make any knee jerk reactions, to take time to assess the situation before we made any serious decisions. We did go into panic mode though, how was he going to farm, would we have to move, how would it affect his brother, what about the animals etc, etc. The thing is, we did have that knee jerk reaction, but after the family got together and talked about how the farm would be run, we realised we didn`t have to move and we are gradually changing the type of farming we do so that Chris`s brother can manage more on his own, not that Chris is completely letting go just yet, but at least when he does have to give up work completely, we won`t have to give up our home either. It is so important to take time and not to make any rash decisions.

I know I`ve mentioned this before, that I have come across a lot of positive people who have MND, which is brilliant, but I`m not so naive as to think that everyone who has it can feel that way, not at first anyway. I can quite understand why anyone would feel just anger and despair. I was reading about a lady who has just been diagnosed, she seemed fairly young and she was very angry, I totally get that. To get this diagnosis is the most awful thing and the younger you are, the more so. Chris cries about it every now and then, but he says he has done everything he ever wanted to do, including getting married and having a child, but I think that`s just his way of dealing with it, of accepting it. I do know there are other things he wanted to do and maybe he still can, but he doesn`t seem to be angry that he might not be able to. I think what he is trying to say is that he is luckier than some,  he got to do many of the things he wanted to do, someone who gets MND young, they might never get to have children for example, they miss out on so much. Don`t get me wrong, he`s not happy about it, he`s devastated, but he`s never been one to get angry about any thing. I don`t feel like that, I feel he is being cheated of his future and so are the children and I and it does make me angry. Of course it`s perfectly natural to get angry, it`s part of the grieving process for the loss of your future and for the unfairness of it all, but it can be self destructive if it is all consuming, if it turns into bitterness. It can eat you up and spit you out .Better to turn that anger into a positive thing and to use it to fight, to fight to live, to fight for a cure.

 At the moment Chris is just getting on with trying to farm, which is already miles away from what he used to do and the MND is always with him. He has to use a mobility scooter to get around the farm for example, but his routine hasn`t altered too much for now. I do know it literally takes up all his energy, perhaps he is too tired to get angry? I wonder how he will be when he won`t be able to get out and work. Will anger kick in then? I`m trying to prepare myself for all kinds of emotions when that time happens. Perhaps it`s that stage that fires people up more. I don`t know. I don`t have any answers, just thoughts and observations. I can`t let myself worry about the future too much as there is nothing I can do about it and if I do let myself go there it`s a very scary and sad place, so I try to take life one day at a time. For now Chris comes in from the farm and greets me with a smile on his face. I guess for now, I can`t ask for more than that, well, yes I can, I can ask for a cure....please.

No.27.Facing the truth.

Well, yesterday started with Chris choking on his Weetabix and me having to slap between his shoulder blades hard to clear it. (The physio showed me how to do that). It always scares me so much when that happens, because he really can`t catch his breath or cough properly. I guess it really is time for him to think about having a peg fitted.
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After lunch a nice man from Cornwall Council came and fitted a handle on the wall in the shower to help Chris get up from his shower seat and a second hand rail on our main stairs. Chris can still manage the stairs, just, but he has been pulling himself up on the one banister rail . Now he will be able to spread his weight between the two.

Oh dear, this is really happening to him isn`t it ? He really does have MND. I had a dad who had Multiple Sclerosis and a mum who had Alzheimer`s, I never dreamed in a million years that Chris would get this. I told my youngest daughter that we must never get bitter, it`s bloody unfair yes, but life is one big lottery, simple as that and what ever life throws our way, we just have to deal with it. It doesn`t mean we have to be happy about it though, it doesn`t mean we can`t get angry sometimes.

I `ve said this before, but I am so grateful for the people I`ve met via social media, who have been touched by MND in someway. It really does help to know we are not alone and that there are people to get advice from who`ve actually been there. There are so many people tirelessly raising awareness and fundraising and that is so wonderful, so thanks to all of them.They are all so positive and that really helps me keep focused on the here and now.

We are never going to give up the fight to help find a cure, not ever. We have to fight so that future generations never have to go through this. One day MND you will have nowhere to hide.

*Edit* I have to admit watching Chris do figures of 8 around the cars parked in the yard on his mobilty scooter does look a lot of fun. He knows how to live in the moment and is making the most of it. Love that man. <3

No.26.Note to self.

I did something I shouldn`t have yesterday, I watched a documentary on You Tube,which was made about 11 years ago. It was about a man who had MND, it followed the last few months of his life and in his case , it ended with him going to Dignitas in Switzerland. It really hit me what the later stages will be like. It breaks my heart to think of what Chris will go through one day, it makes me so sad for him. The one blessing, if there is a blessing, is the level of care, support and equipment on offer now. It seems to have improved greatly. It also made me think of the MNDA Charter, fighting for the rights for good care and dignity for all those with MND and how important that was. Anyone can sign the charter, to anyone reading this, click on the link below. There may be no cure as yet, but we should make sure that everyone who has MND has the best care possible.

Oh, and note to self, don`t watch any more MND videos on You Tube!

http://www.mndassociation.org/Resources/MNDA/Campaigns/Documents/MNDA_Charter_5_pages.pdf

No.25.Topping up the smiles.

It was so lovely to escape from the farm yesterday evening, just Chris and I. I`ve never seen a proper stage play before with proper actors off the tele, we really enjoyed ourselves. We thought the walk from the car park to the theatre would be OK for Chris, it wasn`t too far, he took his walking poles for support and although he managed it, it was very slow going. I think if we went again we would have to take the wheelchair. We also found something else that is off the menu food wise, soft, chewy mints! He choked while eating one. I think anyone who has MND will know that when they choke on something, it is slightly different to how a person with a healthy swallow would choke. He`s scared me a couple of times in the past doing that. Still, I guess he can live without chewy mints. That aside though, we had a wonderful time, I think we must do that again while we still can. We can`t totally escape MND where ever we are, but it was so good to get distracted from it for a while. It certainly topped up the smiles.

No 24.Seeing the funny side and having fun

It is possible to see the funny side in the most unfunny of situations and Chris and I do laugh together when say he can`t get his words out for example. Last night I asked him if he could tell if his MND was progressing and he said yes as he was finding it harder to keep his balance. If he was sweeping up the yard with a broom, he said he was fine until he picked the broom up off the floor and then he would nearly fall over. The way he said it and the vision of him using a broom without it never leaving contact with floor, just had us in stitches. Some might think it a little weird to laugh at what MND is doing to him and I know one day things won`t be so funny, but for now, laughing at it when we can is good.

We are actually going out tonight too, a very rare occurrence for us at the best of times. We are going to see the stage version of `All creatures great and small ` at the Hall for Cornwall. Chris always loved the TV series and books and it will be a time for us to forget about this awful disease for a little while and spend some real quality time together while we can. We win today MND.

No.23.Finding the smiles, anger vented.

Every day I wonder if I`m doing the right thing in baring my soul like this. In reality it`s hardly the whole world, but every now and then someone says thank you or that it helps, so I guess it is worth it. I write this mainly for myself. A diary if you like, I don`t want to forget a day of this nightmare, I don`t want to forget how it has made us all feel and what it is doing to my husband. I want to always feel this fired up to raise awareness for MND, little shy, wouldn`t say boo to a goose me. I want to also remember that there is also a lot of love and laughter in this situation, that we do smile and have fun still and that just sometimes MND doesn`t win. It might be stealing Chris`s body, but it isn`t taking his soul or his mind or his amazing sense of humour and his strength helps me to be strong. I feel shame on the days when he has to support me, but I know he doesn`t think any less of me for it. I did feel low this morning, my daughters did too, but we cried, hugged and talked and then carried on as we always do. Our anger and emotions vented for now.

Our youngest daughter has been working with her dad on the farm today to earn some money and it allows her to spend more time with him too. They have such a laugh and giggle out there with so many smiles and so much fun. She drives him around and he loves it. More of those precious moments.

After dinner Chris and I went to test drive the Kangoo, although it was more expensive to run, we have opted for the automatic, it was better for Chris now his legs are weaker. I`m pretty short in height, but it didn`t feel too big and was nice to drive. It`s time to say goodbye to Tizzy as we decided to buy it, the end of an era, can`t say I`m looking forward to the next one too much and this sounds completely wrong, but bring it on, as they say. We`ll make sure there is more to life than MND.

The MNDA shared my blog on their Facebook page today. When I got home I was shocked to see the views on my blog had gone up by over 700 and I was so very touched by messages that were left by people on my post, where MND has touched so many lives. It helps to know we are not alone, but still so very sad to know how many have shared or are sharing this journey with us today.

 I`ve said this before, but raising MND awareness is so important, how else can we get people to donate, how else can we get funding for research, how else can we find a cure. So today I keep writing my blog, trying to raise awareness my way.

The anger is done for now, today we get on with life and just live, that`s all any of us can do. It`s OK to be angry or sad sometimes, but we must always find something to smile about too . Most  importantly of all though ,we must never give up having hope, because to give up hope means we give up the fight and that is something we must never do.

No.22.Sometimes it ain`t all positivity

I could sugar coat this blog and make it seem like we are always super positive, always super brave, sometimes we are none of those things. I want to be honest and tell it as it is, how it makes me feel, good days and bad days. Today, for me, was a bad day.

"Today I feel angry, I am angry with MND, I am angry that it chose my husband, I `m angry that it chooses any body. I want to be like in that film `Inner space`, where they shrink a ship with a crew and they go inside the human body. I want to be shrunk and go inside my husband`s body and hunt down the little buggers that are doing things to his motor neurones and I want to kill them so that they leave him alone. I want to get a special nerve kit and mend the damaged ones, I want my husband to be back to normal. I want him to live!!!! It`s all so bloody unfair !! Sometimes it`s hard to be positive, sometimes you just have to be bloody angry !!!

OK, got that off my chest, got a bit emotional there....... 

We were just watching TOTP`s 2 from 1979 and the Beach Boys were on with `Lady Linda`. Chris tells me he named one of his tractors way back, after that song, he painted the title on the bonnet. I said I didn`t know that. I told him that he`d better tell me all the things I don`t know yet about him. I want to know them all before .....well before. Chris just smiled and he made a joke. I love that man, how the hell does he stay so cheerful ? I asked him if he ever gets angry and he said yes, when his fingers can`t undo a nut or turn a bolt. It`s not having MND that makes him angry, it`s what it stops him from doing. He`s the positive one, the fighter. There`s me supposed to be supporting Chris, when the reality is, he is really supporting me.

OK bad dream, I`ve had enough now, can I wake up please?"

No.21.Precious moments.

We had our usual Sunday roast today. Our girls were chatting about music and films, the funny videos they`ve watched on YouTube and it was lively and fun. Precious family time together. Chris does what he always does, he eats and listens to the chatter, I join in, we all laugh, it was lovely, a slice of normality, a time to forget about MND for a while. Momentarily I suddenly thought about being alone one day, regretting that Chris and I won`t grow old together, but then I dismissed it and closed the door on that thought again. Chris hasn`t gone anywhere yet and hopefully won`t for a long while. It is easy sometimes to be so worried about what will be that you can`t enjoy the here and now, so for us this is what living for today is all about, enjoying those precious family moments and taking what life has dealt us, one day at a time .

No.20.Sorting cars and keeping up the fight.

Well, we think we have managed to find a new car, test driving it on Tuesday. We did look at some WAV cars, (wheelchair access vehicles), but we couldn`t bring ourselves to move on to that stage yet, they were quite old and tatty too. I think the Mobility route will be the best one for that when the time comes. We need the seats in the back more at the moment  and as long as the boot will take Chris`s mobility scooter and a wheelchair, then that is what we will go for, for now. Chris wanted an automatic as one of his legs is much weaker than the other and hopefully he will be able to drive normally for longer with that type of car. I guess we`ll worry about the WAV car when the need arrives. We shall miss Tizzy (our Clio), Chris was always hoping to pass her on to Chloe in a couple of years, but that`s life I guess, Chloe`s not bothered about that. She wants her dad more than she`ll ever want a car.

There are a lot of amazing people out there dealing with MND at the moment, all brave and fighting it in their own way. There are those who are more vocal than others and that is brilliant because they give a voice to those who would rather stay in the background. There are brave people and not so brave people and that`s OK, because we are all different and sometimes being brave can be such a subtle thing anyway. I do think though, that everyone is a fighter. For some it`s about fighting to stay alive for themselves and their family, for others they want to fight this disease for themselves and for everyone else with MND, they are so fired up and angry at this bloody disease, that they go the extra mile and we all have to be very grateful for selfless people like that. Some are the tireless fundraisers who won`t give up and we just want to say thank you to those from the bottom of our hearts.
Chris is a quiet fighter, his battle at the moment is to just keep fighting to work, farming is his life and his vocation. He is determined to get out on the farm everyday (and yes farming for him is a 365 day a year job) and do what he can, even though he has cut down his hours he is still out between 6 and 8 hours a day, but fighting to get out there and provide for his family, is the most important thing for him at the moment and we are so proud that he hasn`t given up or given in, yet, to this bloody awful disease and when he does have to stop farming, we will know he has given it his bloody best shot. Up yours for now MND !!!

No.19.Sometimes.

A friend said to me that it was wonderful that we were all so positive. Well we try, but some days MND gets the better of us, well me anyway. Sometimes it is easy to pretend that this isn`t happening, other days I go back into protective mode. When Chris was first diagnosed I was almost afraid to let him out of my sight, that was so silly, but it were as if MND were going snatch him away right before my eyes, there and then. Sometimes I don`t want him to be outside on the farm, I want him in where he can be safe. I know that is ridiculous and Chris must live his life and I am really trying to resist the urge to smother him. I know how important it is for him, to carry on as best he can. Sometimes I am kind of going phew, as there have been no more drastic changes as yet, but then I think, don`t get complacent, because he might suddenly go down hill. That`s what this disease does to you, it leaves you on edge, waiting for the next sign of it`s onslaught, so no matter how positive I try and be, MND is always there, waiting in the wings. The thing is with MND, everyone ends up the same, but how long each person takes to get there, that is the unknown factor. Not knowing the time scale, that`s the scary part. But never the less, I must refrain from nagging Chris that he should be in more, that he is doing too much,  Sometimes I should just leave him be. Sometimes being positive can be the hardest thing to do.

So today we are taking one of those reality steps, searching for a new car, as I said before, our little Clio just can`t take a wheelchair, let alone a mobility scooter. We don`t know whether to up grade to a full WAV car or just one that can store the scooter. Chris has only just applied for PIP, (which was disability allowance) and apparently that takes ages to come through, so we thought we would see what we can find second hand. Getting one of those big van like cars will seem a bit like `giving` in to the MND, which of course is just plain silly I know, it`s just being practical, but it`s just another thing making it all so very real. I have a vague idea of what else may lie ahead for Chris, but I guess until it happens we are never going to really know what the future will be like and where this MND journey will takes us and sometimes, yes, we are just plain scared.

No.18.Hubby`s new toy

Now my family and I love my husband very much of course and I shouldn`t really be surprised about how much people outside of the family think of him, but I am taken aback sometimes. The `Bake it` day was a prime example, people were coming in and handing over £20 notes which is why we managed to raise £625. I thought we`d be doing well if we made £100. The next surprise was a phone call from a fellow farmer, who`s father had very recently passed away and he said his father had wanted Chris to have his two mobility scooters one indoor and one outdoor. He didn`t want anything for them !! We were very moved by this act of generousity and offered to make a donation to a charity of their choice in return. Well brother-in-law picked them up the other evening. I thought Chris would be reluctant to use the outside one as he doesn`t want to `give in` yet, but I`ve seen him struggle with his walking around the yard and it`s a testament to how tiring it is for him now that he is actually using it. I think he is somewhat disappointed that it only has a top speed of 6mph and I`ve told him wheelies are strictly forbidden, though our youngest daughter came in with a tale of him doing a wheelie when he didn`t mean too. He was driving up to the Roundhouse (a cattle shed), to check the cattle and misjudged the steering. I think he scared himself a bit. Maybe he needs to learn to run before he can walk and yes, the irony of that pun was intended, but at least he is giving his legs a rest. This scooter will come apart to go into a car, but I`m not sure our little Renault Clio is up to that job, so the next stage is getting a car that will take the mobility scooter and/or a wheel chair. So many things that have to change. He loves that little car, though he would love to get his beloved TR7 back on the road while he can still drive (long story, won`t bore with that one).

Chris also saw the speech therapist yesterday and she reiterated what the dietician had said about having a peg fitted, sooner is better rather than later. He is coming round to the idea and I printed off a lot of info for him to digest. We are not seeing her again till August, so he will have had time to think a bit more. Yet another step on this unwelcome journey and it makes it all so very real. but as they say, tomorrow is another day .

No.17.Grateful...in a weird kind of way.

That might seem a strange title, to be grateful, but I`ll explain.

I`m grateful, for now, that Chris`s MND is progressing fairly slowly. I`ve read enough about fellow sufferer`s on social media, to know that the future is not going to easy for any of us, let alone Chris.

I`m grateful, for now, that Chris is still able to get out side and do some kind of work and come in at the end of the day feeling he has contributed to the running of the farm, I know the day will come when he will be able to do nothing.

I`m grateful, for now, that Chris and I can still talk to each other, we can still have fun and laugh and giggle together and that Chris can still use his voice to tell me he loves me. One day he will lose so much muscle tone, that he will not be able to talk.

I`m grateful for now, that Chris can still eat and enjoy the food he loves, (though toast and crumbly biscuits are already off the menu) .One day he will no longer be able to swallow and will have to be fed through a gastric tube (Peg).

I`m grateful, for now, that, Chris can still climb the stairs, just about and that we can still share a bed and hug each other at night. One day he will not be able to walk or support himself properly.

I`m grateful too that we live where we do, that he was diagnosed within 3 months, that the palliative care team got in touch really quickly and that they are all so very kind and helpful. Chris now has his shower seat and special foot supports to go inside his shoes to support his dropped feet and that has helped the way he walks quite a bit.

I`m grateful because the South West was chosen by NHS England to be the first area to be funded for state of the art speech recognition technology, though hopefully by the time Chris needs it , it will be available for everyone in England and the rest of the UK.

I`ve been told that my blogs sometimes make people cry, that was not my intention. I just want to document our journey and in spite of how it seems, we do still try and live `normally` as best we can, we still as a family, laugh an awful lot. We get excited about our future fundraising plans, because that is the one tangible, positive thing we can do. Every penny raised is a penny towards research and a step nearer a cure. We have a holiday planned too, which we are really looking forward too.

So for now, we have a lot to be grateful for, but there are many others (5000 people, at any one time, have MND in the UK) who are further on in this despicable MND journey and where every day is a struggle for them and their loved ones. So, if you read this and shed a tear, then shed it for them and share this and maybe one more person will learn what MND is about and will support a fund raising cause when they see one. Raising awareness about MND is the one and only reason I write this Blog.

No.16.Reality check

Yesterday`s visit to the dietician went fairly well, apart from me getting the hospital wrong, long story, which I won`t bore anyone with, but we made it to the right one in the nick of time. The dietician was pleased with Chris`s weight and gave tips of how to keep the calories up, she approved of adding full cream milk, mayo and extra cheese on meals and that seems to have helped plus the Resource milkshakes the GP prescribed. The only thing that took us aback was her asking Chris if he`d thought more about a gastronomy tube, a feeding tube placed into the stomach through the abdomen wall. The speech therapist had mentioned it, but we thought that would be a long way off yet. The dietician said it was best done while you are fairly fit and well, before you need it as it is a surgical procedure. That was a lot to take in, even for me, to have to think about that so soon. I know Chris isn`t ready to think about that yet, hopefully he`ll have a bit longer before he has to make his mind up. It is his choice whether to have one or not , but it will extend his life as it will enable him to be fed when he is no longer able to swallow, scary stuff, it breaks my heart what Chris and everyone who has MND will eventually have to go through. It is a big step to take and yet another thing to confirm that this is all so very real.

Today Chris is off to see the speech therapist this morning , hope we don`t get stuck in traffic as they are resurfacing the only road into town. The occupational therapist is coming this afternoon to do an assessment, I think the physio is coming too. Hopefully they will bring a shower seat. All these well meaning people, some invading our home on a regular basis. I wish we didn`t need them, I wish this would just go away and I wish my darling husband could be cured. It`s why I share this, spreading awareness is the one positive thing we can do and we shall do, our way. What we all want IS A CURE !!!

No.15.Appointments and positivity

Today is the start of the next round of appointments for Chris. He`s seeing the dietician for the first time today. He was referred as he was losing weight, though after increasing the calories he consumes and the energy milkshake supplements the GP prescribed, that seems to have stabilised now. Skinny hubby has put on a bit of fat, though that will never stop the muscle wasting, but it gives him a buffer I guess. It will be interesting to see what she will say and hope it`s worth the 15 mile trip to get there.

On a positive note, Chris hasn`t had any side effects from the Riluzol, which is good and we have some fundraising events planned with the family. Youngest daughter is a songwriter and she is organising a small music event with some other bands and a cousin of my husband`s is organising a fashion show. She runs a dress hire company and is hoping to book a local hotel for it. Her husband works for Lloyds Bank and they have promised to match fund all the money raised which is brilliant. Back to the positives and back to the fight, next round to us MND.