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Wednesday, 29 July 2015

No. 221. 'Holiday diary. Day 5.'

Although I managed to make an improvised bed cradle for Chris's feet with a small table I couldn't support them so he has been waking with very sore feet. We are going home tomorrow so he will only have to put up with that for one more night. I have an idea to make a foot support for when we go away again, though that is going to have to take some thought next time. I think our days staying in the disabled rooms at Premier Inns and Travel Lodges are over, or any hotel for that matter.

We thought we would go out on to The New Forest heathland today, park up and maybe go for a walk. I couldn't find the place we wanted to go to so we stopped off at the next car park we came to. Bang!!! the lowered floor on the car hit a rut at the entrance. We drove on and parked up. I got Chris out of the car and then discovered the path was very steep gravel and I was worried Chris might get stuck so we loaded him up and went on to the next one. Bang!! the same thing happened to the car again. There were some horses here on a large green area so I took some photos, but again the path off was unsuitable, there were lots of families cycling on it too, so we left that one. We decided not to risk the car on another rutted entrance and went to Brockehurst instead, the one saving grace in the New Forest is that it is free to park in any of the car parks with a blue badge. Getting around the village though was not quite so easy with inaccessible shops and cafes. I found one where we could at least sit outside and I had a coffee. We had hoped to find a restaurant called 'The Thatched Cottage' where we ate all those years ago, but the footpath ran out and we couldn't get past the pony barriers. We did actually see some ponies under the bridge on the way there and because we had to wait for them to cross over I managed at least to get a photo of them.

As we had already decided to give up on going out on to the heathland, we went to Lyndhurst next where there was the New Forest Museum. That was quite interesting and then we made our way back to the bungalow.

Although I don't regret it I am not sure I made the right decision to come back here for a holiday. We certainly haven't been able to get out and about as much as we had hoped and it was never going to be the same as our honey moon 20 years ago. Chris really enjoyed the show yesterday which is something.

Chloe was moving into her new flat in Brighton today too. She hired a van and moved herself, but in a different life we would have been up there helping her and although she has coped well on her own and hasn't needed our help, I feel a little guilty that we weren't there to do that.

We are going home a day early. We would have to be out by 10am on Friday and leave the place exactly as we found it or we will lose our £75 cleaning deposit. Unless I get up at a ridiculous hour I will not get Chris up and dressed, the car packed and the bungalow made clean and tidy by 10am. I think we both just want to be home now too. I am also hoping the traffic won't be as bad tomorrow.

Like it or not MND does make a difference in everything. It is hard to plan anything too far ahead because you just don't know how fast it is going to progress. We want to go up and see Chloe in the autumn, but trying to find somewhere suitable nearby is proving tricky. We only wanted a long weekend, but it looks like the only option will be a week again and because these few and far between places are well equipped, well they don't come cheap. Also how will Chris be then? That is anyone's guess.

Us home birds wil fly back to the nest tomorrow and go back to same routine as we have here, but in familiar surroundings, we will continue to take one day at a time and deal with each step in decline as it comes. What else can we do?

Monday, 27 July 2015

No. 220. 'Holiday diary Day 3 & 4,'

Day 3

We woke today hoping to go and support the Ian Pratt Solent swim, but sadly the weather meant it wasn't safe for the brave swimmers to swim from the Isle of Wight to the mainland. Although we had timed our holiday so we could at least welcome them on to the mainland, that was nothing compared to the disappointment of all the swimmers and their kayak supporters, plus those who had organised it. We were so upset for them, but their safety was paramount. It is being rescheduled for August so fingers crossed it will go ahead then without any hitches. We weren't sure there would be anyone on the mainland and because it was quite a trek from where we are holidaying, we decided to visit somewhere closer to here instead. It was disappointing and I wished I wasn't quite so scared about going on a ferry with Chris. I am a little scared of deep water which is why I am in awe of those swimmers. I do tend to freak out about anything new. I always left the driving to Chris when he was well. I cope with it by meticulous planning!

It is obvious Chris is getting weaker, transferring him is getting really hard.

After Chris's morning 'cough assist' routine, he nodded off for a bit. When he woke he felt up to trying the NIV, the first time since we have been up here. He managed 15 minutes before choking on mucous. We then decided to go to Buckler's Hard, a small museum village on the Beaulieu River. It was very interesting and it showed the importance of ship building there in the past. When we got back we decided to walk to the nearby shops as Chris suddenly fancied mushroom soup. He hasn't eaten or drunk anything in ages, so we picked a tin up. Walking back we encountered an idiot who had parked their 4x4 on the footpath which meant us having to walk out into a busy main road to get around it, with Chris in his wheelchair of course. 

Later in the evening I sieved a few small spoonfuls of soup from the tin, warmed it up and Chris tried it. He really enjoyed it, it was quite thick which made it easier to swallow. I think he is hoping eating something will help with his mucous problems, we'll see about that. After a few spoonfuls I could tell he was close to choking. His swallow had gotten really tired so he left it at that.

I think we must be spoiled having Sky TV at home, because the digital signal on the tele here is rubbish. It doesn't receive BBC1 or BBC2 without each of them jumping all over the place. At least we can get the necessary 'Archers' for Chris on BBC Radio 4.

We watched 'Partner's in Crime' on my iPad on iplayer which we both enjoyed. I managed to spill coffee on on of the cushions so I quickly rinsed it off. I am such a clutz.

So far we have been lucky in getting the timing of things right. The convene sheaths have been a Godsend, that at least has cut down the amount of times that Chris needs to actually use the loo. We are relieved too that the bathroom is big enough for Chris to get the basin in his electric wheelchair, meaning again, less transferring.

Day 4

Chris didn't sleep very well again last night. They said the drop in O2 levels would make him wake up. We are managing the morning transfer from bed to chair and chair to loo......just, I have visions of him getting stuck!!!!

After all the morning routine was done we set off for The New Forest show. It was only 8 miles away, so even with a bit of queuing it was a piece of cake compare to going to the Royal Cornwall Show.

It was a much smaller show, but they had most things you would expect there. Chris really enjoyed it as he got to see vintage tractors, cattle and show jumping, all the things he loves. He put his riser chair to good use watching the horse show, You can take the boy out of the farm....

We loved seeing all the ponies on the roads and moors on the way back. It will be our last full day here tomorrow, so we are going to get out into the forest. There is a good guide here in the bungalow showing access walks and there is a deer sanctuary where there are accessible ones so I think we will go there. There are free car parks dotted all over the Forest park.

We left about 3.30pm, before the going home rush, Chris needed his PEG flushing and he was getting tired, In fact he fell asleep when we got back, he was quite exhausted and out of breath.

The mucous problems are so persistent that he hasn't been able to use the NIV today again. I hate to watch him struggle like this. The cough assist and suction help, but he can't be on it all day long. He didn't fancy any soup today.

We are looking forward to tomorrow anyway, hope we get to see some horses, even cattle roam free up here too and seeing some deer would be just perfect.

Saturday, 25 July 2015

No. 219.'Holiday diary. Day 1 & 2'

This is my holiday diary, only read if you are really, really bored.

Day 1
My bed support idea didn't work that well, it kept slipping off the bed and it woke Chris up and then of course me a few times. I will modify it a bit tonight. The lady who owns the bungalow is disabled herself. She came to see how things were. I asked if she had a stand aid or a smaller shower chair, but unfortunately they are being loaned out. When I booked the holiday Chris didn't need what he needs now. It is starting to get much harder for him to stand up, it is harder on me too, at 4ft 10" I am not much help to him in that way. The physio is looking into stand aids etc when we get back.

I had to wet shave Chris today for the first time, he can do it himself, although very slowly, but inspite of there being a fancy basin here that goes up and down, the mirror is to the side of the basin so Chris couldn't see in it to shave. It was a bit nerve wracking doing a wet shave on him, but he survived.

As we had some nice weather today we decided to walk down into Lymington town. We are actually staying in Penington, which is on the out skirts. It was a fair walk, an hour there and back, but we found a map in the lounge and that helped us find our way through the town.

Lymington is quite a nice market town on the coast. It was actually market day today and it was very busy which always makes life harder for Chris, crowds and wheelchairs don't always mix. His powered chair managed to navigate the cobbled streets, though how comfy that was for him I don't know. I did manage to get myself a nice icecream. Then the guilts sets it as Chris watches me eat it, he says he doesn't fancy once anyway, but that doesn't alter how it makes me feel. There were a few times when Chris had to go on the road because the paths were too narrow, but you are always going to get that in old towns. We wanted to see the harbour, but there were so many people there and seagulls flapping around,  it was a little disappointing, plus I think we are a little spoilt with our harbour villages at home. We made a quick exit from there.

When we got back Chris was exhausted, it is really tiring for him navigating crowds of people. It meant he had to concentrate all that time and believe it or not it really wore him out. He had a nice long nap which he needed, especially after a restless night.

I ended up eating my ready meal on my own in the kitchen as the smells of cooking make Chris feel sick. I hate that, another thing MND has done to us. We watched a couple of films on television later and we both had a little whisky each, Chris down his PEG and me in my hot chocolate. We decided the easiest way to get him to the loo basin etc was to use his wheelchair. I wrapped a bin bag around the electric controller just to be safe. I am getting quite worried about how hard it is for him to stand up now. I hope one of those stand aid things will work in our home. We managed to get the bed thing sorted by turning the table the other way and Chris slept much better.

Day 2.

It is safe to say now that I do everything for Chris, for various reasons the choice was taken away from him up here, but now he has gotten over the initial embarrassment of me doing personal care for him, I think he is quite relieved about it as it was all getting such an effort for him. I don't mind at all. In a funny moment I was putting a roller deodorant under both his arms. He said 'I only do one.' I said, 'You only do one arm? ' he replied, 'No, I only do one run with the roller on each arm!' That made me laugh, my misunderstanding of him and his OCD, everything has to be done in a particular way. He can be very challenging that way some times. The only problem I am having is him getting weaker physically. The rate he is going I am wondering if he can make it to the end of the week being able to push himself into a standing position. I try my best to help, but I am not much use and I am giving myself back ache..not good. 

The cough assist and suction routines continue twice a day, he still hasn't been able to use the NIV yet.

It was another wet and rainy day. We were planning to go to Beaulieu Motor museum, and hoped it would dry up.

Unfortunately it didn't dry up, not while we were out anyway. On the way there I suddenly went into panic mode because the petrol gauge on the car went from just below a quarter of a tank to the red with the petrol light flashing in about 5 minutes. That freaked me out, I hate living on the edge, then when we got to Beaulieu I checked Chris's pump and it was off and wouldn't switch on, panic number two, did I unplug the charger by mistake last night? Chris wouldn't get fed now till we got back. 

We managed to get in a good look around the museum and the Top Gear attraction, but it was still pouring down so we decided to get back. I still didn't find a petrol station, but we made it back and found out where the nearest one was on Google maps. I also checked Chris's pump again and it started working! What was that all about? As soon as we got back to our holiday home too the sun came out...flipping heck. Chris then fell asleep and here I am bored again writing this. 

We are supposed to be going to watch the guys come across tomorrow on the Solent swim, but the weather forecast isn't looking good, it isn't safe for them to swim in high winds. Good luck to them, I hope the weather is kind and they can do it.

Eating alone again while Chris sleeps. Sorry Weight Watchers, your ready meals are rank.

No. 218. 'MND is such an isolator.'

Gosh, sometimes it seems like I am always moaning.

Because my eldest daughter and her boyfriend live with us there is always someone to talk to at home, plus Chris's sister and brother pop in now and then to talk farm stuff. Now we are away it is obvious how little Chris talks these days. I talk to him a lot, but he replies very little. Talking for him is such an effort now, especially with the mucous in his throat. It is always very rare for us to be totally alone, but here alone on holiday it is more obvious now how little he does talk.

Recently I have had to be careful cooking around Chris as the smells makes him feel sick. I tend to eat away from him anyway, but again here on holiday it is more obvious. I had to sit on my own in the kitchen this evening with my Weight Watchers ready meal. Booking a meal out or having a coffee somewhere just isn't happening. Multiply what he is experiencing when I eat by adding a restaurant full of people and food smells let alone him just having to watch everyone eat while he can't. I can't deal with that let alone him. 

Even when we were out walking around today Chris was always lagging behind in his chair and I am a slow walker. The town was busy and him navigating crowds is tiring and stressful for him. The number of times I turned around and found he was a good 20ft behind me. I tried walking beside him holding on to his arm, but then I would be in the way. When we got back he was so tired that he slept for two hours.

I never expected to recreate anything like our honeymoon. MND has put paid to that in so many ways and of course MND just had to tag along for the ride, we weren't able to leave that at home, but it is nice to return to some of the places we visited back then.

Sometimes MND makes me angry, some times it just makes me sad. We will do our best though to get some kind of precious memories from the week. We have some good days out planned so I still think it was a good idea to have a week away together. We aren't totally defeated by MND yet.

Even so, MND is such an isolator in so many ways.

Friday, 24 July 2015

No. 217. 'The holiday begins.'

The trip up started with a diversion just a mile away from home, then when we hit Truro it was grid locked and it took about 3/4 hour to get through the town. Most of the main A30 in Cornwall is dual carriage way, but there is a section at Temple near Bodmin which is single carriage way and it is being upgraded to two lanes. Well we were bumper to bumper for miles either side of Temple which added about 1 1/2 hours to our journey. The rain followed us up all the way from Cornwall too.

The Traffic wasn't too bad after that, a few hold ups along the way, but nothing major. I think we got off rather light on the A35 going by the traffic reports on the radio. The trip took 7 hours altogether when it should have only taken about 5. Chris coped with it OK and the convene sheath and bag made toilets stops easy for him.

The bungalow is very nice, tucked down a side street on the out skirts of Lymington. It had one of those puffy air fresheners though and I hated it. It reminded me of a care home I worked in once, very sickly, so I switched it off.

The wheeled shower chair that was provided was pretty unsuitable really. It was large and self propelled and I had a hell of a job moving Chris in it as he can't lift his legs. We gave up in the end and he transferred with his powered wheelchair instead. The wheeled shower chair we have at home is brilliant, I can just take Chris from toilet to the basin to the bed with out him having to change seats. We then attempted to transfer him to the bed from the wheelchair, although it is a riser bed it is lower and the mattress softer than ours. Chris fell back on his back, which hurt him plus he couldn't breathe and then I had to pull him back up. We then had to come up with something to support his feet as I mistakenly left the blow up leg supports at home. I used pillows and one of the nest of tables to make a bed cradle, not ideal, but it has sort of worked. Boy it is amazing how you get used to your own equipment and way of doing things. If a purpose built bungalow doesn't meet Chris's needs then what will? There is nothing wrong with the bungalow, it is laid out well and everything thought of, but I guess the needs of someone with MND are quite unique. I am having to sleep with only part of the duvet as Chris was cold so I wrapped him up in more of it. What fun.

Guess I had better see if I can get some sleep. Chris keeps choking on mucous build ups, so we'll see on that one.  Off exploring tomorrow, at least the sun should be shining.

Thursday, 23 July 2015

No. 216 'Holiday stuff.'

We are off on holiday soon, we are going back to where we spent our honeymoon in The New Forest. We managed to find a nice purpose built self catering, disabled bungalow where you can loan for free specialist equipment. it wasn`t cheap, but hopefully it will be worth it.

We also hope to go and support the 'Ian Pratt Solent swim' for MND and catch up with some lovely people when we are there. A whole group of swimmers, each supported by someone in a kayak, will swim from the Isle of Wight to Stokes Bay on the mainland. Each of them will have name bands on their wrists, names of MND Warriors and MND Angels and Chris is honoured to have his name among them. 

There is so much to organise, all of Chris`s feed and equipment for a start, will it all fit in the car? I am making lists of lists. We had hoped to catch up with Chloe and Tom too while we are up there, but the distance and her moving into her new flat and starting her new job have meant that isn't possible now. (We are surprised, but super proud of Chloe as she is training to be a community carer part time along side her degree). We will try and get up to see her in the autumn. Luckily Tam and Karl will be looking after the bungalow and the pets. I think we are a little anxious to go away, but I almost feel it is like now or never for a proper holiday, the first on our own since we got married. I can remember being on honeymoon and crying because I was missing Tam and Jordan who were staying with my mum. Where did all those years go? So much has happened in those 20 years.

These days everything is about timing and planning, hopefully everything will work out just right while we are away.

No.215. 'Same old, same old.'

The mucous episodes continue. Sometimes in the morning things seem OK so Chris refuses the cough assist as he thinks he is will be fine. Unfortunately this usually means it has built up really badly by the late afternoon. This results in Chris gagging, choking and vomiting to bring it all up, making these episodes even more distressing than they are already are. Where does it all come from anyway? Our GP said we produce a litre of mucous of saliva a day! I can well believe it.

This is all helping to make Chris feel really low, that and the farm being sold, that has really hit him hard. We know it has to be done, but that doesn't make it any easier. Hopefully our week away will be the distraction he needs though it is a bit of a worry having to deal with all of this so far away from home.

I had a chat with the respiratory nurse in Plymouth. She said it is quite possible Chris may not be able to use the NIV because of his bulbar issues. That is not good. NIV would buy him some time. He still doesn't want a trachaeostomy either.....what to do?

Tuesday, 21 July 2015

No. 214. `A day in our life`

Our daily routine at present, just if you are curious and as a reminder for me.

This is not a typical day necessarily for someone with MND as everyone is different, it is just a typical day for us.

Around 6.30am the PEG alarm goes off. I get up and get a glass of water, I disconnect Chris's feeding tube and then flush the PEG tube with the water. Sometimes I'll get another hour of sleep, other times I will get up. If I sleep in I will get up around 7.30am, I then detach Chris`s night wee bag from his convene sheath, empty and then dispose of it. I give him his alarm bell buzzer so that he can contact me. It is just a wireless doorbell, he sleeps a bit longer while I go and have my breakfast.

When Chris is ready he buzzes me. I help him transfer him to his shower chair and take him to the bathroom. I push the chair over the loo and leave him. When he is done there he buzzes me again. I push him to the basin where he washes and shaves. He still wishes to do all these things alone, so while is still able he does, even though it can be a very slow process which can take him an hour to complete. When he has washed and shaved he buzzes me again. I then help him to get dressed and attach the day wee bag to his convene sheath. When he is dressed I help him transfer to his wheelchair. I then give him his medication via his PEG and flush through with water and set up the day feed in his back pack, transferring the pump over from his night stand to the bag. This will pump in 750 mls of fibre feed during the day for about 6 hours.

During the day Chris will get mucous build ups between one and three times a day. I then use cough assist and suction to help clear it for him. This can take up to 30 minutes at a time.

I give any additional medication needed during the day via the PEG such as anti nausea medication, plus extra water if needed.

Around 4.30pm the PEG alarm will sound to say it has given the correct amount. I then switch it off and put two more glasses of water down, the first one includes any medication he needs. He is then free and is no longer attached to a feed so often chooses to sit in the armchair.

Bedtime is usually around 11.30pm to fit in with the feed timings. I give him his medication via his PEG and flush through with water. He transfers again to the shower chair. I remove the convene sheath from him, clean and dry him and attach the new one. Chris then does his teeth etc. I then get him into his jammies and wheel him to the bed. I help him transfer to the bed and lift his legs in. I make sure the feet are positioned properly on the lilo wedge and against the pillow support at the end. His dropped feet cause a lot of pain if they aren`t supported. I then attach the night wee bag to the convene sheath, I clean my hands and then attach his night feed via the stand pump. The night feed is a smaller amount, 500mls, but goes in at a slower rate so as not to upset his digestion. This takes around 7 hours to go through. We have an adjustable bed as Chris has to sleep in an upright position in order to breath properly. We have yet to introduce the NIV at night, but that is the plan.

During the day Chris will read, do a bit of office work, nap, watch TV and go out for a bit around the farm yard while he can. We get out when we can, welcome visitors and of course have various appointments now and then, some at home and some away.

Because of his choking issues I am afraid to leave him alone, so I wait until my daughter is around if I have to go out for any reason on my own.

This is our life at the moment..everyday.

Sunday, 19 July 2015

No. 213. 'Feeling overwhelmed.'

I sometimes feel others have been given the wrong impression of me, us, our family. Words bandy around like brave, strong, inspirational. We are none of those things, we are just ordinary people trying to survive a horrible disease. We just do what anyone would do in a similar situation.

All the fancy equipment that is offered, as grateful as we are, it won't make the MND go away or stop it's progression. They are just a too small sticky plaster on a too large cut. The cough assist helps get up the mucous, but Chris still has to have me suction it from his mouth, sometimes two or three times a day. The NIV will hopefully eventually improve his oxygen levels, but so far he can only tolerate it a short while before the mucous builds up again and then the air being forced down into his lungs also forces the mucous down and then he chokes. He has medicines for this and medicines for that, everyone is doing their best to help, but this disease is forever throwing something else in your path.

I feel over whelmed at the moment, not so much with our life, but seeing the pain of others in a similar situation. I feel ashamed because people have been so supportive of us, but lately I just want to hide from it all, sometimes others pain is too much to bare. I sometimes feel like I have opened this door to sharing our life with this hateful disease, but wish I hadn't. I will still write my blog, I will still share it, I am compelled too, I have no choice, I just wish this hadn't happened to us, I just wish I didn't have to write it in the first place.

I need to step away for a little while, I need to recharge my batteries and just deal with our own lives. I need all my energy for Chris. Do not worry, in a few days I will feel different I am sure, but for now......MND has got the better of me. 

Wednesday, 15 July 2015

No. 212. 'Back to Derriford.'

Today was another trip to Derriford to see Ruthy the physio. There was no fixed appointment, we were just told to turn up in the afternoon, so there was no panic on timing. The road layout into and out of Derriford hospital scares the poo out of me, I don't mind the rest of the two hour trip.

Ruthy was lovely and she spent over two hours with Chris getting the cough assist right, showing us how to use it etc. I asked why we had to bring the NIV back and she said Chris could still keep trying it if he wanted. They leave the decisions on things like the NIV and cough assist to the patient, the choice is theirs as to whether they want to continue or not. Chris decided he would like to have another go so she recalibrated it so that Chris was in control of the breathing, he coped with it a lot better so we brought it home for him to try again.

The cough assist was weird, it looked like it was trying to suck Chris's face off! It didn't exactly make him cough, but I guess it helped suck mucous up into his mouth and did allow him to swallow some of it. She helped him with some breathing techniques too to help bring the mucous up. She was so patient and kind.

We got home around 6.30pm. Bad timing meant we were stuck in the Truro rush hour traffic again.
Chris tried the cough assist later and it really helped. The length of time using the suction and clearing the mucous was shortened considerably. He tried the NIV for about 15 minutes. Mucous build up caused him to stop it, but it was a little easier for him now. In Ruthy's words, 'Cut yourself some slack.' It is going to take time to get used to.

It wasn't so long ago that Chris wouldn't dream of me being in the bathroom with him when he needed the loo, now I have to go in with him when we are somewhere different and help him. It is strange how quickly you adjust to that kind of thing. It doesn't bother me, but it of course has taken Chris some getting used to. He was a little worried about using the convene sheath on the trip as they haven't been staying on properly, but there were no issues today and that helped a lot to make the journey more relaxed for him. He takes a while in the loo and all the time we are in there, there are people outside trying the door, that feels awkward. There are some funny looks sometimes when people see the two of us come out, but no one has been rude or anything.

We are both tired and I wish Derriford wasn't so far away, but thankfully so far, the trips have never been wasted.

Tuesday, 14 July 2015

No.211. 'District nurses etc.'

OK, the district nurse came and said that Chris didn't show any signs of pressure sores at the moment, the pain in his foot is more to do with the swelling and his dropped foot. Hard to explain, but I knew what she meant. She did say though that Chris was at risk of pressure sores, especially on his elbows and heels, so this afternoon another nurse came with a blow up wedge for Chris's feet in the bed and blow up arm things to go on his wheelchair. They also brought the silicone pads for his elbows, but the special tape has to be ordered to fix them in place. I have also contacted the wheelchair people to see if they can change the arm rests.

I also heard back from Plymouth and we have to go back tomorrow for Chris to collect a cough assist machine, he was told however to return the NIV. We did chat about things and Chris, at this moment in time, has decided that he does not want a trachaeotomy ever. If NIV is not suitable then what will be will be, we had a few tears over that decision I can tell you. He did not want to be kept alive while the rest of his body is dying around him. As much as I want my darling boy to live forever, I do not want that for him either, though I would support whatever decision he makes and if he changes his mind then I will support that too.

Oh all this travelling is a pain, necessary, but a pain, I just hope the cough assist will do the trick with this mucous build up. All this suction and gagging is wearing him down.

Monday, 13 July 2015

No. 210. 'Feel miserable yes, be miserable, never.'

Chris has had a bad few of days with all this mucous build up with me having to suction him for an hour or more at times. He has gotten really tired and miserable understandably and is pretty low.

I got in touch with Jon from Plymouth and he felt Chris could really do with a cough assist machine and could collect one this week. I also rang the GP and he came out earlier. This doctor was lovely and very understanding. He felt that a cough assist machine would be a really good idea, but he also felt the Mucodyne might be working too well and suggested lowering the dose. Chris has had a really runny nose and that is probably because of the medication. The doctor has prescribed some drops to help dry the nose up and he also has some medication to help with the nausea Chris has been feeling recently.

Chris has also been getting a sore heel on one foot in bed, so the district nurse is coming out tomorrow to check that he isn't developing a pressure sore. He is getting on well with the Convene sheaths to help with his toileting, so a proper delivery will arrive tomorrow. They have proved a God send with him feeling so exhausted.

Looks like another trip to Plymouth this week then, it will be worth it, just wish it wasn't so far away and taking nearly 3/4 tank of petrol to get there and back. Wake up the powers that be in Cornwall, there may be only 50 people on average ,down here with MND, but they all deserve access to the right equipment too and preferably from our own central hospital in Truro.

Chris remarked that he was a right miserable bugger, I think not, he could never be a miserable bugger, the right to feel miserable?.....abso-bloody-lutley, be a miserable person?....never.

No. 209. 'Not so good.'

My poor boy is not so good today. This mucous problem in his throat is ongoing and is pretty miserable for him. He still hasn't been able to use the NIV because of it and his breathing sounds a little worse. I am going to give the GP a call this morning to see if they will come out. The physio happens to be coming this morning so we wil see what she says too.

I think he might be getting a pressure sore on his foot so I will call them today too.

I am quite scared to be honest.

Saturday, 11 July 2015

No. 208. 'This runaway train.'

Too many blogs this week, I prefer it when there is nothing to write.

A good part of yesterday and today has been spent by my husband's side, suction hose in hand while he constantly brings up mucous and phlegm from his throat. Where does it all come from? He is miserable, distressed and very tired. He has medication which loosens it all, but it doesn't magic it away.

During one bad episode today he started to cry and told me he was so glad he had me; through my own tears I told him he would always have me, I will never leave his side. It breaks my heart to see him like this. How does anyone cope with it? I am sure I wouldn't, no wonder some do not wish to carry on. What a miserable life he has now, he can't eat or drink and now he has to put up with this horrible mucous and gagging too. 

On days like this I get very scared for Chris. He has been unable to use the NIV properly yet, because, as his original respiratory consultant predicted , it seems to cause more of these episodes. 

What to do? I feel so helpless, I just want to make him well again. I want to take this all away from him.

I wish with all my heart this runaway train would come to a halt and let him get off.

Friday, 10 July 2015

No.207 'MND is tiring.'

Boy is MND tiring, I don't mean for mean for me, I mean for the person who has it. 

Firstly while the muscles are wasting they just keep twitching, these twitchings are called festiculations. I watch Chris and his muscles and they never stop...twitch, twitch bloody twitch. It is like the muscles are trying to fire, but never quite make it, mini explosions under the skin. I don't quite understand the physiology of festiculations, but the continuous contractions of muscles throughout the body is very tiring on it's own. They twitch 24/7 from the feet to the tongue and some are so strong that they are visible through his clothes. These muscles are on overtime, trying to do, goodness knows what.

Secondly these muscles are wasting, slowly dying, disappearing from the body. If you have fewer muscles then those that are left have to work harder, that too is very tiring. Just moving from a wheelchair to an arm chair or bed is exhausting. The muscles can waste every where in the ALS type of MND. When they waste in the chest, that is scary, fewer muscles means they have to work overtime to keep the body oxygenated, less oxygen in the body causes tiredness and it also means it is harder for the body to expel CO2 and that can cause it's own problems. When the chest muscles and diaphram fail completely, then with out mechanical help, that is it, the end. The muscles in the throat get so weak and tired that you can no longer swallow so you can no longer eat or drink, eventually those weak muscles will stop you speaking too.

Thirdly, in Chris's case, the choking and gagging are extremely distressing and tiring. The body tries to expel the mucous and gunk, but Chris can no longer cough and the only way is to urge it up. An episode can last an hour or more and it is extremely scary as well as exhausting as hell for him.

It is tough for a man who would be up at the crack of dawn and not get to bed till late at night, who worked practically 365 days a year and loved every minute of it. A man who in spite of his skinny frame was extremely strong, who would stay up all night to help a cow with a difficult birth, who would work in all weathers and never complain, who had the appetite of three men.

It is little wonder, along with the changes this disease is constantly throwing at him, that he gets a little low sometimes, I am staggered it doesn't happen more often. I have said before that it is his quiet strength that keeps me strong, not the other way around and when he is low, I am low with him.

The technology that is available these days in incredible and each item helps a little in alleviating the tiredness MND causes, but they won't make it go away, they won't cure it, meanwhile every day a little more muscle dies from somewhere in the body and everyday the person with MND gets a little more tireder and of course, a little more closer to the inevitable.

Thursday, 9 July 2015

No. 206. 'Holding back the MND tide.'

Some of us don't like change at the best of times, the changes that MND brings can sometimes take a bit of getting used too.

Today was another trip to Derriford in Plymouth, a two hour drive away and venturing into England (sorry, a little Cornish joke there.) Chris thought he was going to be given a cough assist machine today, as they are unavailable in Cornwall, to help get rid of the build up of mucous in his throat. At the last visit to Derriford Chris was given a special SATs finger thingy that recorded his oxygen levels at night, it actually recorded two nights altogether and then I posted it back to Jon, the respiratory nurse consultant.

Unfortunately those results showed that Chris's oxygen levels were dropping at different times during the night. Jon said Chris would benefit from NIV at night and would put the cough assist machine on hold for now, partly because of the spasms Chris was still having in his throat and partly because getting used to NIV would be enough for now. Jon got a machine, mask etc and explained a little about it to Chris. He said it wouldn't be easy to start with and it would feel really strange as it blows air into the lungs and helps support his own weaker breathing. He put the mask on him and turned the machine on, well Chris didn't like it one bit and was holding his breath in between each blow of air. Jon took it off and reset it so that it built up in pressure from nothing to the selected amount over about 10 minutes. Chris tolerated this a lot more easily, though he found the mask uncomfortable. It has to fit fairly snuggley as no air should escape. Chris wasn't happy about all of this, he wasn't prepared for it. Jon explained that it wouldn't do him any harm, but that it would help him sleep better and therefore he would be more awake during the day. He said Chris's chest muscles were getting tired and that in turn makes Chris tired and the NIV would take the pressure off those muscles for a little while and help them rest. More importantly it would help him live longer if that was what he wanted.

While Chris was using the machine I could actually see his chest rising up and down and when he took it off it was obvious how difficult he is finding breathing these days.

Jon said there was a special card inside the machine which we could send back which would allow him to change settings etc. He also said this machine was a used machine and if Chris tolerated it and used it every night then he would get a new machine which can be monitored remotely. He also included a humidifier if Chris's mouth got dry. It basically passes the air over steam before he breathes it in. It was quite a decision to go with getting one from Derriford rather than Treslike, but here was Jon offering one to Chris now, when it would probably be a month or two at least before he would see anyone down here.

A bag was packed up with a Bipap machine, hose, mask and filters, plus a humidifier and sheets of instructions and off we went on our two hour journey back home.

I know Chris will adjust, but all theses things are not just a physical intrusion into everyday life, they are also confirmation of this disease's progression and I think that is what Chris finds the hardest. I am sure, as with all the other things, PEG, wheelchair etc, he will find the benefits will out way the negatives and accept them as a way of holding the tide of MND back a little bit longer.

(On a plus point, there is nothing quite like that feeling when you cross the Tamar back into Cornwall :) )

Tuesday, 7 July 2015

No. 205. 'Keeping the balance.'

I write in the moment, sometimes those moments are low ones like my last blog, but life isn't low like that all of the time. Yes, MND is with us 24/7, but it just becomes part of your life, unwanted yes, but something you just get on with. You have to learn to adapt or those low days will consume you.

We have happy times too. Chris has been desperate to get his TR7 back on the road. He has owned it for well over 20 years and it has been off the road for about three years. He converted it to a V8 years ago and it has been an ongoing project for him when he had the time. When he was farming and well he was too busy to do what needed to be done and one wish he has is to go for a drive in it again. Of course he can no longer drive and to be honest I think actually getting him in and out of such a low car will be a bit of a challenge, but then isn't every day with MND?

A friend and Jordan have been working on it over the past few weekends and on Saturday it was actually off it's support and all four wheels actually touched the ground. Although Chris couldn't do anything to help, he has loved to watch Fred working on it when he comes over.

Yesterday evening Jordan had come over after putting a new battery in it saying that it wouldn't fire up. Chris was a little disappointed, but it hadn't been started for a while. A little while later I heard a familiar sound and I asked Chris to go to the window, by the time Chris had got there Jordan had come in beaming. There outside was Chris's TR7, the V8 engine purring away like a lion, Chris was thrilled.
There is still a little bit to be done yet and then it has to go through the MOT, but hopefully soon I will be able to take Chris out for a drive, I'll just make sure Karl is around to help get him out of the car afterwards. He may not be able to get back on a horse again, but we will damn well get him into that car.

So yes, we have sad days and bad days, but they are balanced a little by good days, days that are filled with smiles, days when MND can just p**s off for five minutes. It would be so very easy for us to wallow in self pity, but that would just make whatever time Chris has left miserable and what would be the point in that?

I will continue to share the bad days as that is the reality of living with MND, I will not sugar coat what this disease does to Chris, myself and our family, We are only human and it gets to us sometimes, but we will try to just get on with life as best we can. This road is only going to get tougher, but we will do our best to keep smiling and to keep the good memories flowing.

No. 204. 'The MND thief.'

There is a thief, an insipid, vile, creeping thief that comes in the night and comes in the day and it steals. It is stealing you and it is stealing you from me.

It steals your strength from your hands, your arms, your back, your neck, your legs, your feet, your chest, your diaphragm, your tongue, your throat, your mouth, your swallow.

It takes a bit day by day, what you could do yesterday, you can no longer do today, what you could say yesterday, you can no longer say today, the deep breath you could take yesterday, you can no longer take today.

It is subtle, it is sneaky, not always obvious, but it is progressively progressive. Bit, by bit, I see it. I can't stop it and it breaks my heart.

It tries to steal your spirit, but it cannot touch that, but that doesn't mean it does not affect you.
This thief frustrates you at what you can no longer do. It saddens you when you can no longer be understood, it isolates you when you can no longer eat, it breaks your heart with all the other things it has stolen from you and will steal from you, your home, your lifestyle, your job, your future with me, your future with your daughter and step son and step daughter, with your family.

But there are some things this thief cannot steal, it will not steal me from you, I will love and be with you forever, it will not steal your children they will also love you forever, they will never forget you. As much as it is trying, it cannot steal your inner spirit, it can test it and try it and weaken it at times, but it cannot steal it.

There is no happy ending for now with this cruel, cruel disease, but I will be by your side and pray for the strength to be all that you need and to care for you no matter how tough it gets.  

MND may steal many things from you, but it will never steal my love, our love...not ever.

Wednesday, 1 July 2015

No. 203. 'Back to life with MND.'

The communication people from Dame Hannah Trust came down today. They brought a stand for Chris's wheelchair to hold the computer tablet and camera so he can practice much easier while in his wheelchair. They also updated and reset the Tobi i software as it kept crashing. They recalibrated Chris's eyes a few times, but he was getting really tired, so they showed me how to do it. His speech therapist came along too. She felt Chris needed some more Nystatin for his mouth as he was still showing signs of thrush.

The gagging episodes are still continuing. OK the suction pump helps get rid of the phlegm from Chris's mouth, but he still has to get it from his lower throat to his mouth. You can hear it is around his vocal chords as his voice sounds very bubbley. We spoke to the physio last week and she confirmed that there is no access to a cough assist machine in Cornwall. The powers that be just won't fund them. Chris has an appointment next week at Derriford in Plymouth again, where he has been told they would provide a machine. Thankfully Chris's niece is a physio on a stroke ward and has loads of experience with cough assist machines, so she could give advice if needed. These gagging episodes, are very distressing for Chris and can continue over a period of hours. I feel pretty helpless when they happen.

It is Chloe's last day here tomorrow, it has been lovely having her home and it has gone way to fast, but she has to get back to Brighton. We are going out for a meal as a family tomorrow, I will always hate that all Chris can do is watch us eat, I shall never get used to that.

I still feel sad about things, but people are so very kind and supportive. This wonderful MND family to which we reluctantly belong, are an absolute life line and we are blessed to have them there if we need them. Mutual support, sharing mutual pain.