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Saturday, 25 April 2015

No.173. Countdown to diagnosis (4)

Well, the MRI had been done and on April 26th 2014 Chris went back to Treliske to have nerve function tests and electromyography. I didn't go in with Chris, but I could hear some kind of machine making loads of strange noises. Chris said one of the tests involved sticking needles into different parts of his body including his tongue, which wasn't very pleasant. Electricity was basically sent down these needles to test the nerves and Chris said it felt like touching an electric fence. The noises were the reactions to the tests and the doctor told Chris that the machine was making noises when it shouldn't have, so was showing some abnormalities in his nerve function. Not really what we wanted to hear.

Chris had already had an appointment arrive to see the Reumatologist on May 23rd 2014, but this had been changed to see the neurologist on May 21st 2014. That didn't fill me with confidence and I was slowly hinting to Chris at the various things he might have. That wasn't easy as he really had no idea what was wrong with him at the time.

Now we thought we would have a few weeks to wait before we would find out what was exactly wrong with with Chris, I just knew though. deep down, what the diagnosis was going to be, even though I still prayed and hoped I was wrong.

Back to April 26th 2015. I am going to ring Chris's respiratory doctor tomorrow. He says he finds it hard to do things like blow his nose now and at night he makes grunts on each exhale and is more out of breath. I guess this means his chest muscles are being affected. It affects his speech too. It is easy to forget that speech depends on the exhalation of air over the vocal chords. Chris often sounds like he is trying to talk while holding his breath. This is not what we wanted. 

We will be thinking in awe today of everyone who is tirelessly fundraising for MND, especially those who are running the London Marathon, they have our deepest respect and thanks.

We know it is most unlikely for a cure to come along in time for Chris, but there are various trials ongoing around the world and to know that there will be a cure one day and that others won't have to deal with this evil disease, will be the next best thing. Also that loved ones, like myself and our family, won't have to watch the one they love be taken from them bit by bit in the cruelest of ways.

Wednesday, 22 April 2015

No. 172. Feeling tired.

Now I titled this 'Feeling tired' because I am, but not in a bad way, if that makes sense, I have just been so busy with bungalow stuff and having to help Chris more, neither of which I mind a bit, but yes, I am tired.

Chris is up lateish watching an episode of The Avengers on SKY, one of his favourite programmes and I stay awake as he needs help to get undressed and to get his PEG feed started. Likewise in the morning, but in reverse. This is not to complain or moan, but to show what this disease does to people. It is slowly taking Chris's independence and as it does his dependence on me grows more. I don't mind a bit, but feel more for Chris. Trying to get his trousers, thermals leggings and pants off while he stands and holds on to me for balance has been problematic. I asked the physio for tips as they leaise with the OTs, but she just suggested undressing Chris on the bed with him laying flat and raising his bottom up while I pulled everything down. This resulted in lots of giggles from us and left Chris in not an entirely dignified position as well as it being quite tiring for him so we will go back to him standing and holding on to me for now. When he goes to the loo he said he supports himself by holding his head ahead the wall!! Needs must I guess.

The physio came today to check on Chris and they are going to get the OT's to put a hand rail up in the shower for him. The speech therapist also came with a low tech comminucation aid for Chris to try, which is coincidental as his Eye gaze tablet has to go off for repair. The low tech board has the alphabet laid out around it in different colours. It is a bit hard to explain, but it is a simple idea which works pretty well. It will be useful in the future if the high tech aid breaks down again. 

Chris is coping well with the daily feeds, though we have cut the volume during the day slightly because he was gaining weight quite quickly. We have to make sure we time things right if we go anywhere too as it can be a bit problematic if the feed finishes while we are out, as you have to flush the PEG tube with water straight away to stop blockages. We went for a nice walk on Sunday and then realised we had to turn back because the feed was finishing quite soon. 

Chris says he doesn't mind us eating in front of him, but I find when we are on our own that I am eating in the other room away from him. I just feel guilty and bad for him. He did say though that he dreams of food like fish and Chips and steak. It is so cruel, he used to enjoy his food so much.

The speech therapist checked Chris's mouth for thrush while she was here and she said it was looking much better. I looked in his mouth the other day as he said he could feel a hair in it and I was shocked at how much his tongue was twitching. I know he has festiculations all over his body all of the time, but I never thought about his tongue. Of course it makes sense it would as the tongue is a muscle too and his speech is affected quite obviously. 

Chris struggles with his breathing a bit when he is lying flat lately and sometimes he said he finds it hard to inhale after exhaling. I so hoped this disease would not affect his chest muscles yet as they are the most life threatening ones if they deteriorate. On the plus side though, he has had no chest infections or coughs and that is a positive thing.

We are settling in nicely to the bungalow, there is still loads of mess for me to sort out in our old house, but it is getting sorted slowly. The ensuite bathroom tiling is getting done slowly too. We need a second bathroom as Chris takes so long to wash etc in the morning and others need it as they have to go to work, so I am working hard on that project so that the plumber can fit the toilet etc. 

So, life goes on, still MND rules our life and changes our life, but we do the best to make the most of everyday inspite of what life throws at us. We are going up to see Chloe in Brighton in a couple of weeks so we have that to look forward too. Gotta keep between the yawns.

Friday, 17 April 2015

No.171. Check ups.

Today was Chris's six monthly neurology check up at Treliske. We go along, but really it is just a chance for them to check in and ask Chris how he is doing. "Is there anything we can do for you?" They ask, well yeah, a cure would be nice. We tell her Chris has a lovely support team who are very helpful, Chris tells her how the MND has progressed, I swear at one point she was going to cry, maybe as a registrar she doesn't get to see many MND patients. Chris mentioned that he felt his breathing had gotten a little worse and she said to contact the respiratory doctor for another check up.

It was our first trip out with Chris connected to his feed backpack, but it was OK, the only time he has to think about it is when he wants the loo. Then I have to unhook it from the back of his chair and put it on his back. He has the odd Aero mousse or a couple of Lindt chocolate balls a day, but otherwise eats nothing now. Even his hot chocolate and Bailey's ends up down the PEG tube after a couple of sips. Yet my brave boy still smiles, I have no idea how or why, but it is part of his fighting strategy I think, to not give in to it.

Chris's feet swell up a bit now so I have to encourage him to keep his feet up when he can.

Chris's Dell tablet that works his Tobi i has just died, I rang the support line as the eye gaze programme kept crashing, I was told to shut down the programme via the switch and now it won't come back on again. The people from The Dame Hannah trust are coming down again soon and I think they said they would be giving Chris the larger Tobi i computer, just as well I guess. I have no idea what happened to it, good job Chris doesn't rely on it entirely yet. I asked his speech therapist a while ago for some old fashioned speech boards for Chris to get used to for times like this in the future as another way to communicate and she has managed to get one for us which is great. As I said his support team down here are just wonderful.

Well life goes on in this MND dominated world. I wish with all my heart it wasn't so, but it is, so all we can do is make the best of each day and always live in hope, well we have to, what else is there with a disease like this? We must never give up hope of a cure one day.

Monday, 13 April 2015

No.170. Settling in.

The bungalow is slowly becoming home. All the utilities are finally sorted and I am slowly retrieving other stuff from the house, at least we have the luxury of not having to clear everything out just yet even if most of what is left is rubbish or not needed now.

The daily feeds and backpack for Chris came within a couple of days as did the Fresubin nurse to show me how to use the pump with the back pack and the regime from the dietician came in the post, so Chris could start his daily feeds. He has 850mls of feed with fibre during the day over 7 hours to start with and then over 5 though Chris hasn't been able to tolerate it at the faster rate yet, it makes him feel sick, so he is sticking to the slower rate for now. It is much easier for both of us and once connected Chris can forget about it for a few hours. He still has his night feed as well.

I had my sister's family around for dinner on Sunday and I felt for Chris with all of us eating a great big meal. He had a very small bowl of vanilla ice cream, but he said he didn't fancy the meal anyway. It must be tough for him all the same. He still has his hot chocolate with Bailey's at bedtime, but now he only has a couple of sips and I put the rest down his PEG, well he needs the calories anyway and he at least gets to taste it. 

The ramp for the front door is being built so soon Chris will be able to get in and out through the front door rather than the garage.

The palliative care nurse came too and she is always helpful and supportive and encourages Chris to open up a bit about everything.

We managed to get out on Saturday and went to see 'Blood Brothers' at the Hall for Cornwall in Truro. The show was brilliant and the HFC is excellent for disabled access. It was really nice to get out and enjoy ourselves for a couple of hours.

Boy how things have changed in 12 months. I can hardly believe the difference. I try not to think ahead to next year as it can be a little scary, but Chris isn't allowed to leave us yet and he is in no hurry to go. He has Chloe's graduation to go to in the Autumn of 2016 and his presence is mandatory, so give him a break MND and just get lost will you..enough already OK?

Saturday, 11 April 2015

No.169. Blatant promotion.

This blog is short and sweet, it is just to promote the release 'Levels' by our daughter Chloe on iTunes, Amazon and Google Play. All profits will go to the MND association.

We are fighting this together.

Levels - Single by Chloe Fior

Thursday, 9 April 2015

No.168. We move on, MND does too.

MND has taken many things from Chris and us and one of those is our home. As much as we are grateful to have this lovely bungalow to move in to, it has still been hard, especially for Chris. I am sure we will adapt and settle, but I had quite a soft spot for our old house too. I had lived there 20 years, Chris the whole of his 57. We had a lot of happy times there. I suppose what made this move tougher was the reason behind it... MND. It has stolen many physical things from him, but it has also stolen his profession, his farm, his ability to ride his horse or drive his car and ultimately his home.

Moving from a larger house to a smaller one has also meant leaving some stuff behind. We were spoit living in the farm house, the more space you have for more things you fill it with. Chris has found it the hardest to leave things behind, in fact most of the stuff he has hoarded he has brought over, but ultimately those things are just that, things. Our memories, our family and our personal possessions, they are the important things.

Everything has more of less been moved over now, well the stuff we need anyway and I am slowly sorting everything out. The kitchen floor has been laid, Sky reinstalled and after a few hiccups the phone and broadband were back on line. Even the dogs seem to have settled after their initial reservations.

While moving I managed to get in touch with Chris's GP and ask to have his medication in liquid form so that they can go down his PEG. Putting diluted crushed tablets down the tube isn't ideal. I also managed to get hold of his dietician and after discussion with us have decided for Chris to also have a pump feed during the day via a backpack. This will give him all the nutririon he needs, but enable him to get on with his daily life without too much interruption.

There are many cruel things about MND, but not being able to eat is one of the cruellist . It is one of life's pleasures and although Chris has little appetite these days he said he woke dreaming of food last night, it is oh so very sad.

Chris has also started to get quite out of breath if he lays flat in bed, so now sleeps with lots of pillows to prop him up. That will be something we will discuss with the palliative care nurse when she comes to visit next week.

So ... Life moves on and we have moved to a new home, but so does the MND move on, endlessly progressing, always relentless. Nothing it seems, will halt it.

Monday, 6 April 2015

No. 167. Endless choking.

It is always the way isn't it. bad stuff happens on a day when you can't contact someone, like a bank holiday weekend.

On Saturday Chris choked on everything he ate and that isn't much. He can usually manage a little bit of fresh pineapple in the morning chopped up small as it is supposed to be good for oral health and a banana, but not then. I made up some custard and he managed to eat the banana mashed up in that. On Good Friday he had a Hot Cross bun warmed in the microwave so it was very soft and squishy and he ate that with butter very slowly and enjoyed it. On Saturday he choked on the same thing and couldn't eat it. On Friday he drank his usual drink of hot water very slowly, on Saturday he choked on it, in fact everything he put in his mouth he choked on. He cannot tolerate the thickeners either.

I had to keep leaving him to go over to do things at the bungalow, but while I was there Tam's boyfriend Karl came to get me as Chris was having a bad choke. Tam had dealt with it very well, even managing to give him a Lorazepam to relax him, but she was crying and distressed at Chris's distress. Chris was so tired, all this had taken it out of him and I was really upset for him. We both shed a few tears and I got really angry with this damn disease. I hoped it was a blip and not a sign of progression, but regretably the same thing happened on Sunday. He couldn't even manage his usual chocolate treat, or his hot chocolate with Bailey's.

Chris has little appetite now and I think these choking episodes have really scared him and he is beginning to accept that he may need to take all of his nutrition now via his PEG. I was woken at 4am too with Chris choking on his saliva again. He settled after and went back to sleep. I could not.

It is typical that I can't get in touch with any of his support team because of the bank holiday. I will contact his MND nurse and dietician in between moving in on Tuesday. Thank goodness for our mobile phones as we will have no phone or broadband while our number is transferred. 

Chris will need extra nutrition during the day now as he is only having 1350 calories via the PEG at the moment. I will get advice too about the right medication to help with saliva build up.

I get no joy in cooking and eating a meal now, not when I know Chris has to watch us eat when he can't. Even though he says he doesn't fancy anything anyway, I still feel guilty to eat in front of him.

I have also had to help Chris more and more with getting dressed and stuff like that. This damn disease is progressing and I don't like it and it hasn't even been a year since diagnosis yet.

We are moving house on Tuesday (tomorrow) and I am hoping it doesn't upset Chris too much or make him worse.

This disease makes you feel so helpless. All I want to do is to make Chris better, I don't want to lose him, I hate seeing him suffer too. It is so damn cruel.

Now to try and get an hours kip before the PEG alarm goes off.

We need a cure..end of....Please.

Friday, 3 April 2015

No. 166. Countdown to diagnosis (3)

On April 4th 2014, Chris went to Treliske to have a spinal MRI scan to see if there was any spinal damage that might be causing his symptoms. I really hoped it would find something, finding something would be good, finding nothing, not so good. It was a noisy experience for him, but otherwise OK, the waiting game continued.

Around this time the festiculations (muscle twitchings) were now happening all over his body, like little tiny mini explosions, constant and never ending. When I held him close at night I could feel them and still do. Thankfully they don't keep him awake, though I have no idea how he sleeps through them. His speech had also gotten more slurry and his limp was a bit worse. 

Back to the now. We had someone come and visit the other day and I answered the door and waited for Chris to come. I went to check on him and there he was prostate on the floor. He had been so desparate to go and comb his hair that he forgot his stick and fell, he grazed his top lip and cut the inside of his mouth, though thankfully that was all. In his words he did a proper 'Stephen Hawking' fall (as in the film). The moral there for him was to not stress over his hair being tidy and to make sure he uses his stick if he walks. It took us a while to get him off the floor and as always we giggled about it after, but it does worry me as I don't want him to really hurt himself.

We are moving to the bungalow in four days, there will still be some decorating to do and the ensuite to put right, but otherwise it will be ready for us to move in to. It has been very tiring for me and difficult for Chris as he can do nothing to help, he says very little about it, but has said he feels useless. I tell him he isn't, but I don't think that is much consolation to him. I hope he will be happy there.

I always wish I could turn the clock back to when Chris was well, but never more so these past few weeks. I wish life could be the same as it was, that he was still farming and out with his beloved cattle, I often joked that he loved them more than me. We both wish that we didn't have to move, that MND hadn't entered our lives, but it did. Life has changed for ever and there is nothing we can do about that except adapt, take life one day at a time and be grateful that we have some where more suitable to live in.

MND is such a vile disease, stealing so much of who we are and what we have by stealth, bit by bit. I shall hate it always.