No. 196. 'Stealing him bit, by bit.'

Well that was a difficult night. 

I heard Chris gagging again last night as he was brushing his teeth, then I heard him choke really badly. He was sat leaning over the bathroom basin which was probably a good position to be in. After back slapping and half a lorazepam it settled enough to get him ready and into bed. 

The choking then set off his throat spasms. I gave him the iPad to communicate with me as he was having trouble speaking and he asked for the second half of the lorazepam. Fifteen minutes later he was still struggling to breathe, he felt that the tablet hadn't dissolved properly. I said we would give it fifteen more minutes and then I would dial 999. Luckily he started to relax a bit and managed to drift off to sleep. We have a riser bed so at least he was fairly upright.

I wouldn't say his breathing is perfect this morning though he is sleeping. As I sit and watch him I can see the fasticulations in his neck, the muscles forever twitching, all over his body in fact, not just in the neck.

He seems to be able to get away with..just..brushing his teeth in the mornings with only a little gagging, but he is much tireder in the evening. Even though he doesn't eat or drink now apart from his two Lindor chocolates a day, he still needs to keep up his oral health. Last night shook him up so much though that he is not going to brush his teeth at night now. If he is careful he can use the recommended Corsadyl daily mouthwash, so I think he will just use that now instead. 

The choking and the spasms are not just distressing for Chris, but they are distressing for me to watch. I feel so helpless and trying to judge the situation, what should I do? That is scary too. Yet again the visit to see the ENT team next week can't come soon enough.

Maybe the public are more aware now of what MND is. The fact that it causes muscle wasting, that people with it will eventually not be able to use their legs or hands, talk or breathe, but no one really knows what this disease is all about unless you are living it. Those things don't just happen, it is like taking the bolts out of a bridge from all over one at a time and waiting to see what will collapse first, which bit will creak and hang on, which bit will fail, how long will it hold up till the whole damn thing goes.

But my husband is not made of steel and bolts, he is a living, breathing person and I am watching this hateful disease stealing the life from his muscles and him, bit by bit and it is one of the cruelest things I have ever had to watch.

MND has changed our lives in so many ways, not just in what it is doing to Chris either, it will never be the same again. As much as Chris wants to fight and wants to live, how do I bare to watch what this disease is doing to him, how does he even begin to cope with it?

We will keep fighting, keep hoping for a cure, even if the reality is it will probably be too late for Chris, we have to, what else can we do? We need to believe that future generations will never have to endure this awful disease.

MND really is the most hateful disease imaginable.

No. 195. 'Ups and downs'

It has been a funny old week full of highs and lows.

We tick along pretty much OK most of the time, emotionally anyway, then something will flip a switch, something trivial usually, but then the flood gates will open and it suddenly hits me big time that I am going to lose Chris one day. I try not to cry in front of Chris because I set him off, but sometimes we do just have to share the sad moments and have a good cry together. We usually then find something to giggle about and we reset our mood to default and carry on as before.

It has been our village feast week and we managed to get up to the service on the Sunday and to the Quiz week on the Wednesday. We were actually on the winning team by some fluke, Chris and I never take these things too seriously, so it was a bit of a shock. They donated half the proceeds to the MNDA which was the best thing.

We also had a bit of fun doing a video for #MimeForMND.I could never do something like that in front of people, but messing around at home was OK and we had a good laugh. Poor Chris was exhausted after, I am glad we did it in one take!

Chris's speech has deteriorated more this week, it has been especially noticeable when we are in a crowd, even I have trouble understanding him at times. He hasn't got a wheelchair stand for his Tobi i tablet yet, the DHT and speech therapist are coming back in July, so he can only really practise properly when he is in his recliner chair ( he spends most of the day in his wheelchair ). I have found a speech programme that works on my iPad. It is very similar to the Eye gaze system except that of course you have to type in the words with your hands and it is a bit more basic. I think this will come in handy as a back up and to take out with us, ( the Tobi i tablet has already been back for repair once ). Chris actually asked if he could write things down when out, I think the iPad will be a good compromise and help him get faster on the keyboard. He can still type just about.

An appointment has come through to see the ENT team up at Plymouth the week after next. Chris's palliative care nurse was true to her word when she said she would get the doctor to fast track an appointment. It makes it seem a little scary and urgent. I understand why Chris needs to see someone now as the MND is progressing, especially in the throat/speech area, so like everything, we are always just trying to be one step ahead. The thought that Chris might need an emergency trachaestomy is the scariest thing ever, but then so is having to consider having one electively. That will be it then, no more speech, let alone the aftercare needed. 

MND steals so much, but at least we live in an age where there are ways to push the tide back a little with it, to have available medical interventions if you need them.

I am so glad we can still laugh and have fun together, we still have that at least.

The link to our #MimeForMND video.

http://youtu.be/CJE5BpisZ0c

No.194. 'Some positive MND memories.'

It is sometimes easy to think that life with MND is all misery and although of course I know as it progresses life will get more and more difficult for Chris and all of us, it is important to cherish each day and make memories that are special for all concerned.

Here are a few memories from 2014, some that are ultimately MND related, but never the less special.

A month after Chris was diagnosed we held a `Bake it day` and raised over £600. We did it together as a family.

Our Ice Bucket challenge, that was fun !

Chris took his beloved Nuffield tractor to the village church fete. We managed to raise about £50 there with a MND awareness table..

We managed to raise some funds for MND, over £200 from local farmers, at our machinery sale. This is one of the many consequences of MND, the change it has had on our lifestyle, Chris in particular. This is a precious photo for Chris with his late dad.

This is us at the MND fashion show held last October which Christopher`s cousins organised. It was a wonderfu , well supported evening and it raised over £1200 for MND.

We try to look at the positives even though life has dealt Chris a cruel blow, it isn`t always easy, but memories are memories and if they create happiness in whatever way, then they are are there to treasure.

No. 193.'Life changing, life saving.'

I have mentioned before that for now Chris wants to live, he has said he would want to be resuscitated whatever that may involve.

Chris has already been told that Non Invasive Ventilation may not be suitable for him because of his bulbar issues, that is, the problems he has with his swallow, choking and laryngeal spasms, in fact the doctor said NIV would make the spasms worse. He didn't mention a tracheostomy at all, but Chris's palliative care nurse did.

She called back today and after discussions with Chris's MND nurse she came back to tell Chris how best to manage the spasms which happen everyday now. It was decided that for now it would be best to continue with the lorazepam as it is easier to administer and keep the Modazolam for when the lorazapam no longer works. She also felt it would be a good idea for Chris to be referred to an ENT consultant to discuss the possibility of an elective trachaestomy in the future. There would be no commitment, but it would mean Chris would be better able to make an informed choice about having one. The only problem is that Trelsike in Truro, although they would be able to do a trachaestomy, are not experienced with MND and his MND nurse said he would be better off going to Derriford in Plymouth where they are. The only problem is that Plymouth is 100 miles away or a 2hour plus drive depending on traffic.

Chris's initial reaction was panic, he didn't want a trachaestomy yet. His nurse explained that meeting the ENT Doctor wasn't to have one done now, but to find out more about the procedure and after care. If he should change his mind then that would be fine. On the other hand if his choking issues became intolerable or his breathing deteriorate, then it would be better to have one done electively at Plymouth than as an emergency at Truro. It is a lot to take in.

Chris decided that he would like to see this doctor so Angela is requesting an appointment urgently. Seems a day out to Plymouth will be on the cards soon.

MND is life changing, of that there is no doubt, a tracheostomy is definitely life changing, but it could also be life saving for Chris, this won't be easy for a man who hates making decisions, but he wants to live so it is something he really must think about.

No. 192. 'Attitudes and days out.'

I have been following a blog of someone who has really taken on board the silence campaign the MNDA is running for awareness month. She has set herself the challenge of not talking for a week. This lady works full time so as you can imagine this is quite a challenge for her. It has been interesting to read the reaction of those who know her and the general public, to her using an iPad to speak for her, even though she has a sign around her neck explaining what she is doing. They have ranged from avoidance to patronising her to being supportive.

Chris and I went to the Royal Cornwall Show yesterday, we got to experience some of those attitudes a little ourselves when we were out.

Firstly Chris hasn't totally lost his voice yet, but it is very slurry. I know he avoids talking a lot of the time, including to me as it is such an effort. We bumped into a few people we knew up there. In crowded places it is much harder to understand Chris than usual because of the background noise. I found myself translating a bit for him which was fine, but I think it was a bit frustrating for Chris, not at others, but at himself. We just tend to laugh together at home when he can't get a word out, I think it is a bit different meeting people who don't know you quite so well. Family and close friends were fine with Chris of course, but casual aquaintances, well I could see them shuffling their feet a little bit, I think they just felt awkward. 

It is very easy to just ignore someone who can't speak very well. I am very aware of this when we have family gatherings at home, especially because Chris can't join in the eating part either. Conversations buzz around and he is there quietly watching and listening, it is so easy, no mater how unintentional, to leave him out and I find myself constantly fussing over him like a mother hen. God bless him for putting up with me!

I think being in a wheelchair has it's own challenges too. Chris wasn't alone up there. There was the facility to hire a mobility scooter and people had really taken advantage of that. I really have observed a difference in attitude though to people in a mobility scooter to those in a wheelchair like Chris. It is as though those on the mobility scooters are treated 'as normal', but once in a wheelchair slightly more like you must have a mental impairment as well. A couple of times there were some characters in suits walking round, you know, they are dressed up as animals or something promoting a product. They would ignore me, wave and approach children, but also Chris! What is that all about? Chris is very tolerant and didn't outwardly get offended or anything, but he did admit later that it is still uncomfortable for him having to use a wheelchair and intimidating too being in crowds. I can relate to that a bit being short, but it must be even more so to be so much lower than the general public milling around you. Trying to negotiate crowds in an electric wheelchair has it's own challenges and I found myself walking slightly ahead of him to guide him through.

I had to help Chris when he needed the loo. They have plenty of disabled loos up there, but the one Chris used was very cramp, especially with an EPIOC wheelchair. I had to go in with him as he was still attached to his backpack. There was just enough room for him to stand up to go to the loo, (he still insists on standing as long as he has support which is fair enough.) He also managed just about to reach the basin to wash his hands. He could not however use the hand dryer, there was just not enough room with his wheelchair in there and me. It is all very well providing disabled toilets, but at least make them big enough, sticking up a few hand rails and a ramp isn't quite enough really. When you are suddenly in a wheelchair facing challenges like these it is a steep learning curve.

The next challenge was finding somewhere discreet to disconnect Chris's feed and flush the PEG tube once his feed had finished. It was not easy, we weren't going to use a toilet..no way and almost considered using the family/baby changing area and quickly thought no, not suitable. We did eventually find a spot under a tree in a corner. I made sure Chris had his back to the crowds and I tried to do it as discreetly as possible. Bottled water, mug and syringe in hand I set to the task, no one was looking, why would they really, they would have no idea probably that someone could be fed that way. I however, yet again, missed the stopper on the end and unclamped the tube which meant everything I had just put down siphoned out again and then some, all over Chris and his clothes. Luckily I had another bottle of water so I repeated the task, making sure everything was sealed this time. I wiped Chris down as best I could. I apologised profusely to him and he just smiled and said,'Don't worry, it'll soon dry,' I do love my boy.

On the food front I still cannot get over feeling guilty eating infront of him. I treated myself to a pasty for lunch as I hadn't had one for ages, Chris insisted I had one too, but even though he says he doesn't mind, the smells of all this lovely food around him must be tortuous to him.

On the drive home it took 2 1/2 hours to drive 40 miles because we hit rush hour around Truro and we were stuck in a lot of traffic queues. (Yes we do have rush hours in Cornwall). A couple of times I thought Chris was having a throat spasm. Not here Chris, not here, thankfully they passed, but it is a bit or a worry when you don't know why or when they will happen.

(On a totally different note, though a sort of related subject, Chris is very, very determined to keep up with his oral health, especially now he can't eat as apparently there are more problems with your teeth through not eating than with eating. I find it distressing though as he gags when brushing his teeth, we have bought the smallest electric toothbrush we could find as his grip is weak and he has even stopped using toothpaste as he was told that it is the brushing action that is the most important thing, but the gagging is still awful. He won't give up though and still persists, but I do find it upsetting to listen to. It also leaves him with some choking issues after for a while. What to do?)

This disease is a bugger!!

Despite all of the above though, we are glad that we went to the show. Chris really enjoyed it. The day before he kept changing his mind as to whether he should go or not. Then it dawned on him that he might not be well enough next year and then he might regret not going (The Royal Cornwall Show is a big deal to the farming community). I think he was worried about needing to use the loo, but we just about coped with that as I said and also him getting a choking spasm. On that latter point it just shows they are truly random, the throat spasms, because it was dusty and around the vintage tractors it was smelly and he was fine.

Still we manage to get out and make some memories, we are off to the Hall for Cornwall tonight to watch 'The King's Speech.' At least we know what to expect up there.

 

Life goes on with MND.

No.191. 'Palliative care'

OK, back to the real world.

The palliative care nurse came yesterday, she visits Chris once a month and is lovely. When we first heard a palliative care nurse would visit Chris I was a little shocked. Surely palliative care was for people who are dying, but then of course I realised that he is. The whole of the team are there to offer palliative care, to make sure Chris's needs are met as the MND progresses.

Angela looks after any medical needs Chris might need. She wanted to know how the visit to the respiratory doctor went. She knew about his referral to Chris's MND nurse and the prescribing of molazapram for the laryngeal spasms he is getting. She felt a higher dose of lorazepam might work just as well and is going to talk to the team, maybe even Chirs taking it daily. 

She also asked if the doctor had mentioned any other kind of interventions. I think both Chris and I knew what she was going to say and although I thought the doctor might mention the ENT team, he didn't. He also didn't mention that Chris may have to have a trachaestomy one day and that was what Anglea was trying to bring up. It is possible that if the spasms get worse and the medication doesn't work that the only way of saving Chris's life is a trachaestomy. We have discussed it. Chris wants to live, he wants to be resuscitated so if he has to have one so be it. Angela is going to get a referral for him to see the ENT consultant, just to introduce him to him/her, so they are aware of Chris, yet another thing to take on board along this perilous journey.

Chris was listening the to The Archers the other evening and they were were out in the fields eating pork pie with egg in the middle, pickled onions and ham and tomato sandwiches and it made Chris really fancy them. He recited the list of foods to me lustfully. The way he was describing them, you would have thought he hadn't eaten for a week, oh... wait a minute.....he hasn't hardly eaten since Easter Saturday to be precise. He was laughing about it, but seriously my heart broke for him. My poor boy can only eat a couple of Lindor chocolate balls a day now. It is hard to imagine isn't it? The only thing keeping him alive at the moment are bags full of liquid feed being fed direct through his tummy wall into his stomach. I have no idea sometimes how he keeps smiling. He actually jokes that this beef farmer is now a vegetarian!

On another countryside note, we were going to visit the Royal Cornwall Show on Friday. We haven't been for a couple of years and I thought it would be nice to go, there will be lots of tractors etc, plus farm animals and horses among other things. He still has an upset tum from the antibiotics and I think he is also a little scared of the throat spasms. If it is dry it will be very dusty and I think he is a little scared of having one while we are out. It is a longish trip for us and it will mean being stuck in traffic for ages too. I don't mind either way, we'll see. He has had a couple of spasms today and I had to give him a lorazapam, (we are still waiting for the other medication to come in). It did settle him eventually.

Jeez I hate this disease so bloody much, people not touched by it have no idea.

No. 190 'That poster`

This poster is part of this year`s MND awareness campaign. the person in the poster, Michael, has MND .

When I first saw this poster I didn't initially perceive the 'Karma' aspect of it until it was pointed out. I quickly learned that many were offended by it both those with MND and those without. They felt it was giving out the message that people were to blame for getting MND.

The MND association and Michael have said this was not was intended, more to point out that MND can affect anyone at any time. I believe Michael even used the term 'Karma' in a joking way as a reaction to his diagnosis.

I can totally relate to this, when Chris was first diagnosed he went in to a deep depression, partly because of the diagnosis, but mainly because he felt he must have done something to cause it. In his case, as a farmer he was personally responsible for the spraying on the farm, he felt he must have done something wrong. He would spend hours going over and over his techniques. The guilt he carried and felt was driving him insane on top of having to deal with the MND diagnosis.

It was only when he shared his fears with the medical team that were looking after him that he started to feel reassured that it was not his fault. He was told that no one knows why people get MND, it does seem to appear to affect people more in an active lifestyle like in farming, sports and the military, but there are many who get it who don't fit into any of those categories so it really is true for now that no one knows why. The most recent thoughts are that there needs to be 6 or 7 things to come together to fire up MND, one possibly being a persons genetics and there is so much research going on into this aspect at the moment.

There certainly is no 'Karma' involved and it is a shame that this well meaning poster, taken out of context, has been interpreted that way. As I said before, it has upset many people with MND and without directly and many more so from the misinformed comments on social media by those who have barely heard of MND, let alone what it does to someone. Social media is always a double edged sword, we use it as I do to share MND awareness etc, but it can also very quickly fire up ignorance among some who in turn feed the trolls of this world who have a field day. But,.... we do live in a free world with freedom of speech and from time to time this kind of situation will arise. There are always those who wish to spill bile on any subject you care to think of. 

We all knee jerk react sometimes, myself included and watching TV debates this morning about this matter you realise that some people are still ignorant about MND and what the Ice Bucket Challenge achieved. £7million may seem nothing to some other larger charities, but to the MNDA it was mind blowing and it is funding that genetic research right this minute.

Will this damage this years campaign? Who knows, it has certainly got people talking again even if not quite for the right reasons. The fact is people like us will be living with MND for the rest of our lives, not for just one month of the year and not just while our loved ones who have it are still with us, but for ever. I don't think we can ever get over watching someone we love die such a cruel death. 

So I guess we must move on from the negativity surrounding this campaign, in hind sight the wording could have been better, but the genie is out of the bottle with that one now and the backlash must run it's course. We will carry on with our life with MND as I am sure everyone else in the same position will and from my own point of view making the most of each day with Chris. I will still keep trying to educate those who know little about it with my blog and also continue to spread MND awareness in the process.

We don' t need to add anger and bitterness to our already challenging lives. The trolls will move on to something else, we cannot control their ignorance anymore than we can stop MND.

I shall put this behind me and focus on what really matters, my husband and my family.