Wednesday, 28 January 2015
Today is Christopher's 57th birthday, I pray there will be many more. People have told me that we should treat each special date as if it were the last, but we can't do that, because it is like giving in. It is better for us to carry on as normal as much as we can, not be in mourning for birthdays that may not happen. I think we would drown in sorrow if we did.
MND is our new normality now though. Chris has been practicing the Eye gaze again, he has found it really hard. If he is too tired his eyes keep drifting so it was difficult for him to keep his eyes focused on one letter at a time. He also tried the dot on the head and the Smart Nav camera. He managed to navigate the page much easier, so maybe that will the best way for him. I expect it just takes practice, he is going to keep trying with the Eye gaze system. They all use The Grid, which is the software designed for speech communication.
Chris has been falling over more too, I have made him use his sticks and trolley walker more in the house and that seems to have helped. The last thing we want is for him to break something. I can't believe it has only been nine months since diagnosis. I certainly wouldn't say the progress is slow.
We will be having a family birthday for Chris. His brother and hopefully nephew too, will be coming over and Kevin is trying to locate the family slides from their childhood as Chris said he would like a slide show for his birthday. I hope he can find them. Chloe is going to Skype like she did last year, so we will all be together in one way or another. Thank the Lord for modern technology in so many ways.
We are not going to treat this birthday as if it were Chris's last, we are going to celebrate it in the hope of many more.
Edit: We had a lovely evening together, Chris and Kevin were reminiscing over their child hood the rest of us laughing and enjoying seeing Chris as a boy and how some things have changed on the farm. Chloe joined in via Skype so along with Jordan and Tracy and Tamara and Karl we were altogether. Pureeing the Chinese didn't work so well and although Chris ate it, he didn't really enjoy it.
I am also very grateful that Chris is always so patient. I forgot to put the stopper back on his PEG tube this morning, so the two syringe fulls of water I just put down it just siphoned out, making him very wet. He didn't say a word, he just let me clean him up and change his top, smiling all the while and then told me he loved me. Well that's good cause I love him too.
Monday, 26 January 2015
Life goes on as they say. We are under TB restrictions again so yet another TB test of the cattle is being done. The daffodil people are out in the fields spraying the soon to bloom daffs. Farm life continues and life's daily routines continue.
Chris takes so long to get ready in the morning these days. I asked him if he needed me to help him get washed and dressed, but he just gave me one of those looks that said a definite no, so I let it be. He still chokes fairly regularly, though thankfully not as bad as the attack he had the other week. His GP prescribed him Lorazepam which he can put under his tongue to help him relax if he has a bad choking attack, but I know he is reluctant to take it, hopefully he won't need too.
The Fresubin bolus drinks turned up yesterday, plus the higher calorie night feeds. At least that takes the pressure off his meals a bit. Chris is still enjoying having different ice creams and chocolate. Lindt chocolate balls are his favourite at the moment. Baileys ice cream goes down rather well too. He even manages his whisky, as long as it is in a Baileys drink first. That way is doesn't seem to cause any choking problems as Baileys is so much thicker.
The physio came to see Chris today and she said she could see Chris's balance had gotten worse and she decided it was time for him to be referred for an EPIOC wheelchair, so we'll see how that goes.
Last evening was the first time Chris had been able to practice the Eye gaze computer. It took a while to get it set up properly, but Chris is slowly getting the hang of it. He can only do it for a little while as it is tiring, but they say your eyes get stronger with practice. We had to recallibrate it again, but that is all practice which is good. He is determined to master the Tobi i as he said he didn't want a silver dot stuck to his head.
There was a special APPG meeting in Westminster today to discuss communication aids. So many people die without a voice. The south west is one of the better areas for supplying equipment, sadly it is not so throughout the rest of the country. I hope this meeting ensures that everyone gets access to the equipment they need. My biggest fear is that Chris will have to go into hospital one day and if he is unable to communicate, how will he be able to express his needs? There are so many horror stories, you cannot imagine. We are are grateful to those who have MND who attended this meeting and to those who either work with people who have MND or have been touched by it. I hope it was not in vain.
When I read about people who are fighting MND and are going into the later stages, I feel so sad. There is one family going through this right at this moment and my heart goes out to them all. I know this will be our future one day, but I cannot let myself go there yet. Five people a day die from MND, diagnosis is a death sentence, plain and simple. I wish with all my heart this weren't so.
Please dear God may there be a cure sooner rather than later. Give people with MND some kind of hope......please.
Friday, 23 January 2015
Today we said goodbye today to a very close family member. I only mention it (as it is something very personal) in the context of MND.
Our youngest daughter sang an A Capella of Amazing Grace during the funeral service, she held it together, as did her cousins who did readings.
Chloe does not wear her heart on her sleeve and prefers to keep her emotions under wraps. She would rather express herself through her music and songwriting. At the very end of all the services the song 'Dance with my father again' was played and straight away I could see the tears welling up and I knew these tears were for Chris. Chloe was breaking her heart and holding on to her dad really tightly. Our other daughter Tamara was crying too as were myself and many others. For a few moment tears were being shed for not just one man, but two. It finally hit Chloe that she would probably never dance properly with her dad again and that he actually has MND and that it is going to take him away from her way far too soon.
Letting go and saying goodbye is never easy, but it is part of life. Sometimes the hardest thing of all is to face up to, or acknowledge, the more difficult things life throws at us. It is easier to stay detached than face the pain head on. There is no right or wrong way in this situation, we all deal with these things differently, we do what is right for us. I think though that it did our daughter good to finally shed tears, tears for not just for one special man in her life, but for her father too. Facing the reality of MND if you have it is hard enough, let alone as a spouse or partner, but to face it as child with a parent who has MND is a whole different ball game and confronting that pain so young, well that can be a scary thing.
Letting go and saying goodbye is hard, but it is also a shock when the reality hits you hard and sudden. Tears are necessary, they are a release of that pain and fear, but most of all those tears and all that pain, well they show us that we love.
Wednesday, 21 January 2015
Well today was the day that Ruth and Ryan came down from the Dame Hannah Trust in Devon to set Chris up with a PC tablet with Tobi i software. This includes a special software programme that Chris can navigate and use with his eyes and can then speak for him. It is an amazing piece of technology and sadly not everyone in England can access it yet.
First Chris tried a system whereby you place a silver dot on your nose or between your eyes and you move your head around to navigate the screen pages. Chris found that OK, but you do have a silver dot stuck to your head. They then set up the Tobi i gaze. Firstly Chris's eyes were calibrated to the screen and then he used his eyes to navigate. This was a little more tricky, but he was actually doing really well with it. He had forgotten to put his reading glasses on and that meant recallibrating it again. I think Chris prefers the Eyegaze system, but he has a month to try both to see which he prefers.
Of course Chris is still able to communicate orally, even if his speech is slurry, but this is another thing that benefits from having it before you actually need it. It is going to take a bit of practice to get fluent, but it is one clever bit of kit.
Of course this equipment is on loan and before Ruth and Ryan left they told us we would need to get it insured. They had the costings there and everything in total came to £5000. That is a lot of money and a big responsibility to look after too, but actually, in the great scheme of things, not that expensive, when you think that it gives someone who is cut off from the world a way of communicating again and the number of people suffering from MND generally is very small compared to something like cancer, so I think everyone with MND who needs it should get it.
It does take Chris more of an effort now to have a conversation with someone and I know he feels self conscious sometimes. It is amazing that there is this kind of technology around and once he learns how to use it properly and when the day comes that he can't speak properly anymore, he will still be able to communicate and feel part of everything and that is so important. More importantly he will be able to express his wants and needs, especially ,God forbid, he should have to stay in hospital in the future.
His eyes really will be the bridge from his mind and thoughts to ours. Thank god for modern technology.
Sunday, 18 January 2015
Some people that know us have said to me that we are marvellous, brave etc and of course it is very kind for anyone to say things like that, but I'm not sure that we are brave or marvellous at all, well Chris is, though he is very good at letting life wash over him like a gentle cloud. Dealing with it also means accepting it and neither of us truly feel that. Yes we are accepting the day to day stuff this disease chucks at us as everyone in a similar position does, there is nothing heroic in that, it's just survival instincts, sink or swim, all that kind of stuff.
I plan our future, however long that may be and Chris smiles and complies, 'You are the homemaker' he says, you know what to do. I feel sad to have to take control, be his voice, his communicator, plan our life with MND, while he just takes each day as it comes. This may seem strange, but I feel honoured to be the one who will ultimately care for him and yes I have some idea of what is to come and no it won't always be easy, but caring for him, well that has always been easy, he is an easy man to care for.
Sometimes I want to scream and shout and swear and blame someone, something, for taking my husband from me so cruelly, sometimes I don't want to be brave or strong or marvellous. I want our life back, our future back. I want Chris to still be farming, to still be doing what he loves. I want to be moaning at him for working such long hours, I want to be cooking him those huge meals he loves, baking all those cakes he loved, I want to see him ride a horse again, I want to walk for miles with him. I want to grow old with him and for him to meet his future grandchildren one day.
It is a blessing I suppose that thoughts like that don't creep into my head too often, there is no point as dwelling on what should or could have been taints the pleasure in the now. Inspite of MND and inspite of what it is doing to him, we still laugh a lot, some times at MND itself. For example Chris laughs at his floppy feet at night when I put his bed socks on as his legs and feet are so cold. Bed socks? Who would have thought it, he could have moaned about something like that, but no, Chris being Chris he just laughed.
So when people say I am being brave they are wrong, I am only as strong as the man I married. Yes, I care for and support him, but without him even realising it, he is still doing the same for me. I am brave because he is brave and I am strong because he is strong and I laugh because he laughs and when scary stuff happens like the choking we get scared together too.
I've said it before and I'll say it again, this disease will steal Chris's ability to walk, talk, eat and breathe for himself, but with every bit it steals, his spirit grows stronger. He will fight till the end, I know he will, but he won't have to fight alone because I and all of our family, will be fighting it along with him.
Friday, 16 January 2015
This week hasn't been an easy week, with other family things happening, but life says, 'Get on with it' so we do, well we have to don't we?.
The palliative care nurse came for her monthly visit. She mentioned a medication that Chris could have that can relax the airways if you choke. Neither of us were sure about it, but we'll see what she says next time as apparently she gets together with the GP and others to discuss things like that.
I also sent off a mouth swab for Chris and it turned out he does have oral thrush. He has been able to eat a bit of fresh pineapple at breakfast and hopefully that will help along with the medication.
I have been putting a milkshake down Chris's PEG at lunchtime as he rarely fancies very much lately and it saves a lot of time for him. I discovered though that it is best not to accidentally squirt it everywhere prior to putting it down the PEG. These shakes are exceedingly sticky and I managed to squirt it all over the days business post. They can give superglue a run for it's money as I had to prize the envelopes apart! I think I'll try and be more careful next time.
We had to go and get a new suit for Chris today as none of his suits fit any more. The irony is that people generally lose weight with MND, but I was told to feed him up and I did, but any weight he has gained seems to have gone solely round the middle, so none of his suit trousers fit. We ended up getting a new suit in Next. The staff were very helpful after I asked if I could bring a suit downstairs as the men's department was up stairs and there was a sign saying 'Out of order' by the lift. It turned out the lift wasn't out of order, someone forgot to move the sign, so we were able to go upstairs after all. I have to say the changing area was brilliant. They had a really large disabled changing room with a seat and support handles and it worked really well to help Chris try the suit on as he is unable to stand unsupported now. Chris usually puts his hands on my shoulders, one time where me being short comes in handy and I pull up and do up his trousers and tuck in his shirt, I rather think he enjoys me doing that sometimes, ha,ha, well it puts a smile on his face anyway. Oh life's little pleasures. Thankfully the suit he chose fitted, so that was a successful trip out.
Chris's speech has deteriorated a little more I think. I suppose there is deterioration throughout the body, but the speech is the most obvious. There hasn't been anymore choking attacks since the last one. I think being careful with what Chris eats helps and he has been extra careful with his drinks. He did try the Rescouce thickener, but he wasn't keen. I think he would rather I put the fluid down the PEG than use that. Life is so unfair, but Chris just takes it on the chin, like he always does. I don't know how he does it, I know I wouldn't and don't.
Monday, 12 January 2015
The dietician came to visit Chris today. It was his first home visit with a dietician and she was really nice as all of his MND support team are.
Because Chris struggles with eating sometimes from the point of view of what to eat and how long it takes, the dietician is going to replace one meal with a bolus (small bottle) of feed which I can put down his PEG at lunch time and then he can have a little bit of what he fancies such as yoghurt or ice cream as well if he wants. He will still have his ReadyBrek at breakfast and his pureed main meal for now. It is quite a mathematical process for the dietician to work out Chris's daily calorie and fluid intake. One blessing is that these boluses will be delivered here now along with the night feeds, rather than me having to cart large trays of milk shakes from the GP surgery eight miles away. The night feeds will be changed from 500 calorie feeds to 750 calories so that the daily bolus won't need to be so big. I think it will take about 10 minutes to put the bolus down the PEG tube.
I hate how we have just gotten used to all of this as if it has always been this way, I suppose it is just as well though I wish it weren't so. It is still strange though to think of Chris and the enormous meals he used to have, to how he eats now. Eating used to be a joy to him, now it is mostly a chore. Yet another of life's basic pleasures MND slowly steals.
Wednesday, 7 January 2015
The speech therapist called at home today. The people from The Dame Hannah Trust were supposed to be here today too to set up the Tobi i and Eyegaze, but there was a fault in the tablet they had ordered for him and the company had run out of stock, so they will come down again in a couple of weeks.
The speech therapist tested Chris's swallow and said she could feel it was weaker and uncoordinated which is why he has been choking more. Because of this and his choking incident the other day, the speech therapist brought along a drink thickener for Chris to try. As he took a sip of thickened water Emma asked him how it was. I had to laugh because Chris's face spoke volumes and he wasn't impressed with it. Emma said he would get used to it and that he didn't have to use it all of the time, just when he felt he needed to for now. She also said he had signs of thrush in his mouth, again caused by the weakened muscles not being able to swill the mouth around properly. What a bugger this disease is. Chris's speech is worse today and Emma said it showed signs of fatigue. God I hate MND so much.
This time last year Chris just had a limp and I was nagging him to go to the GP. I can't believe what a difference 12 months has made and it makes me a little scared to think what things will be like this time next year, so the only way to cope is to not go there.
Let's hope there will be some progress soon as far as better treatments or a cure are concerned. Just have to keep hoping and praying on that front. What else can we do?
Monday, 5 January 2015
Wow, I'm writing this just a little cream crackered. Chris had a really bad choking episode yesterday evening after taking a rather large swig of his weekly whisky Mac. Slapping the back brought out a large amount of liquid, but it also made him vomit. I telephoned 111 and they said he should get to Treliske within the hour. Well it is a good 3/4 hr journey from here and he needed to calm down first. He did recover and decided he didn't want to go, well it wasn't the first time he has had a bad choke so we went to bed and made sure he slept sleeping upright. He woke about 1.30am unable to catch his breath so I thought A&E it is this time. The problem is Chris can't really cough properly anymore so it is hard for him to clear anything that goes onto his lungs.
Chris was triaged quickly and I had been panicking as I had forgotten to flush Chris's PEG when I disconnected it, (it has to be flushed straight away to stop blockages). I asked the triage nurse if they had enteral syringes on the department and he went off and found one straight away, so I was able to flush it. Chris was then taken onto the department and then we were told he had a four hour wait to see a doctor! His breathing had settled thankfully with just little episodes of not being able to breathe which soon cleared. Everyone was very nice, they were just really busy.
After the usual tests which were all normal they just said his chest XRay showed a slight shadow at the bottom of one lung which could be a bit of fluid and to just watch out for signs of an infection like a temperature.
We arrived back home at 8am. Chris did managed to get a little bit of sleep while we were at the hospital, but I didn't. Trying to sleep during the day in a noisy house with the phone ringing constantly didn't bode well for a day time sleep, so we both gave up on that one.
Maybe it's time to introduce the drink thickeners, I'm not sure Chris is ready to give up on his whisky Mac just yet though, maybe I will have to put it down the PEG instead!
Saturday, 3 January 2015
Yesterday we visited Chris's dad. It was lovely to catch up again. While Tom was having a doze in the afternoon Chloe helped Chris practice his speech software on his tablet. (This is the demo version, they are coming with the proper computer and programme on Wednesday.)
Chris is practicing using the on screen keyboard and more importantly to use the predictive text. He has also been building up useful phrases in separate data banks, such as 'Help' and 'Opinions'. Chloe jumped in with helping Chris. Her first attempt at typing a phrase for him was the first two lines of ' I have a brand new combine harvester.' which caused lost of laughter, especially when the 'speak' tab was pressed. The afternoon then consisted, in between helping Chris to type some sensible phrases like 'I'd like a drink please', for example, to them typing song lyrics and silly phrases and listening to the computer pronounce them. Getting the software to speak NNNNNNNNNNNNNNNN batman, was hilarious as it sounded more like a machine gun. I spotted Tom smiling while he was dozing though all of this.
Anyway, a fun afternoon was had between father and son and father and daughter. We also laughed at Tom and Chris because between Chris's slurry speech and Tom being hard of hearing, there were some funny misunderstandings of what Chris was saying. Well you have to laugh don't you?
When we were chatting in bed later, and we do talk about, hopefully, the far future, that I would need to find work when I was on my own as I would need to support myself and I didn't want to be stuck at home alone all the time anyway. Of course I said that what I really wanted was for us to go into old age together. What was needed was a cure that would halt MND in it's tracks and then he and I could grow old together hopefully with just his limp and PEG as a reminder. I then got very silly as it made me think of Long John Silver for some reason and we laughed some more. I know this stuff is only funny to us, but we really do have to find the funny side of this hateful disease.
There is no real treatment for MND so laughter really has to be the best medicine.
Thursday, 1 January 2015
Just had to write a little review about this.
'The Theory of Everything', the film about Professor Stephen Hawking, was an extremely emotional film for us, especially Chris. So much of it hit home, it showed the reality of today and the reality of what is to come and we both spent a great deal of the film in tears.
Beyond that though it is a film about love, loyalty and fortitude. It is about never giving up and living the best life that you can with whatever has been dealt your way. More than anything though I came away with a new admiration for the man this film was about. Not only is Professor Hawing a pretty darn clever man, he also has a wonderful sense of humour and I would like to think that the twinkle in his eye will never leave him.
The acting is incredible and Eddie Redmayne deserves an Oscar for his portrayal of someone with MND. I would thoroughly recommend watching it. It was worth the tears to taste the inspiration and hope this film portrays.