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Sunday, 31 May 2015

No. 189. Me and my Blog

I know I have written some of this before, but I thought I would explain why I write my blog.

Firstly I am someone who likes to know and understand things. If I get an interest in something I will either get a book on it or look things up on line. I am also a great believer in talking about things and not bottling things up. I am sure I talk way too much sometimes and I am pretty sure my family would agree with that, but that is just who I am. (Though when meeting new people I am pretty shy.)

When Chris was first diagnosed we felt very alone even though very quickly he seemed to have this wonderful medical team appear around him. Still we felt scared and we were devastated. I had read up online about MND, so I knew what was going to be in store for Chris and I was scared. I did know a little about MND before Chris's diagnosis though. The first time I had heard about it was in my teens I think when David Niven was diagnosed with it. I remember then thinking MND seemed the most scariest disease ever. Everyone has heard of Steven Hawking of course, but the only other time I had ever heard of it was when some one was on the news, in the later stages of MND, wanting the laws changed on assisted suicide. I had never seen or read anything about what actually living with MND was like. More recently a friend of mine in the US had told me about Jason Becker, the rock guitarist who was diagnosed aged 19 and is still alive today in his 40's and I watched the documentary about him. It was because of Jason Becker that I guessed Chris had MND as he had similar symptoms to him.

I decided quite quickly that I wanted to keep a record of all the things that were going to happen to Chris, as macabre as it may sound, I didn't want to forget a thing. I have never been able to keep a diary before, unlike Chris who has kept one since he was a child, so I thought I would write a blog instead. I had no intentions of deliberately sharing it, in fact the first few blogs were written as anonymously as I could make them and I kept them private, they really were just for me. It was a kind of therapy for me to to get my thoughts and fears written down as well as logging the progress with Chris.

I use Twitter and Facebook and I started following the Motor Neurone Disease association on Twitter. Of course this generated like minded people to follow me and this was the beginning of finding our wonderful MND family. One day I decided to share my blog on Twitter, on a whim and people started reading it. It also coincided with MND awareness month so I guess sharing it just grew from there. I also realised that I needed, yes needed, everyone to know what this damn disease does to people, how vile and cruel it is and how we desperately need a cure. I hope along the way that I have helped a little in raising the awareness of MND too.

I am very humbled at the positive response I have had since sharing it and knowing that in someway it has helped other others in a similar position is very rewarding.

There are many wonderful other blogs out there written by those who have MND, but my blog has only ever been written from my own personal perspective, as a wife and carer of someone with MND. I promised myself I would keep writing it no matter how tough it gets and that I will always be honest and that is a promise to myself I will keep.

Thank you to those that have read it and shared it, love and best wishes to you all.

We fight this damn disease together.

No.188. 'Heroes'

There was an interesting spat on social media this morning. Someone misunderstanding positivity for negativity, me being accused of being patronising for saying someone is a hero. I have never come across negativity personally, only support and advice and yes pride for those who do what they do. Positivity is great, but no amount of it can halt MND's onslaught, plus there are so many different kinds of MND, some rage faster, some rage slower. If we could cure MND with positivity, then it would no longer exist.

Having a positive mindset has to be a good thing for living with this disease though, for dealing with anything in life. MND is cruel, but everyone's journey with it is different. In the end though, the person with it will die from it....sooner or later...fact. Being positive helps you to make the most of each day, to feel you are sticking two fingers up to this damn disease, it keeps the spirit alive.

There are indeed people I would call heroes in our MND world, people who literally go the extra mile, who constantly fight for awareness or raise money. Those who are facing this disease head on with both fists up, putting themselves out there. The fighters, the campaigners, those heroes who will let themselves be heard. (Everyone though with MND is a hero in my eyes, even the quiet ones.)

People often say we are brave, but neither Chris or I are sure we get that. We don't do anything special, we don't spend hours campaigning or fundraising, we just get on with life. There is nothing brave about that. OK, Chris has been dealt a cruel blow with having MND, but just living each day as best we can isn't brave. What else do we do? roll over and die? Give up? Wanting to live is not brave it is a need, an instinct, a desire. Neither is it wrong if someone feels the opposite. To have the courage as an indiividual to want to end their own suffering with a disease like MND, takes a different kind of bravery altogether.

Yes I write this blog, there is nothing brave about that, I am probably never going to meet the majority of people who read it and when I do I usually want to crawl into a hole out of embaressment. I am not brave at all.

Is Chris a hero though? Well he doesn't give in, he still fights in his quiet way, he still laughs and smiles and makes the most of each day, even if to him it is just doing simple stuff. He has no desire to travel the world or go to far flung places. Being able to watch the tele when he wants or read a book when he wants, these little pleasures were always denied to him when he was a busy farmer. Plus he gets to spend more time with me and his family. Don't get me wrong, he'd go back to farming in a heartbeat if he could, but he just accepts the life he has now and makes the best of it. Chris is never going to be putting himself out there, not in a big way, that's just not him, but he is my husband, so of course he is my hero.

We do need those who are prepared to shout loud though, those who have it in them to fight publicly, to put themselves out there, to campaign, to raise money. They are the life blood of fundraising whether they have the disease or have been touched by it.

I still don't understand why saying someone is a hero is patronising, of course most of those 'heroes' would deny that they are. Since being thrust into this MND world, following these brave people has given us hope and strength and yes, lots of laughter, never negativity, we are grateful and glad to know them. This would never have been so were it not for MND, but now we do and we just want to say thanks to all of them.

So yes, I will call all those with MND heroes, the ones who shout loud and the quiet ones, they always will be to me.

Wednesday, 27 May 2015

No.187. 'Pegtastrophie!'

Blimey, my blogs are like buses, you don't get one for ages and then.......

Now I have a confession to make, I am not actually a very good nurse, oh I do my very best, but I am clumsy and forgetful and I can't count the number of times Chris's stomach contents have nearly siphoned out of the PEG tube because I forgot to clamp it or squirted water all over him because I missed the PEG plug due to my early morning stupor and forgetting to put my glasses on. Thankfully my mild mannered husband can see the funny side of things.

This morning I set Chris's daily PEG feed up as usual and went to clean the PEG hole and flush the tube and Chris complained of pain. I touched around the hole and it was really red and inflamed and it looked like he could have an infection. Luckily our surgery out at St Keverne are very good and they squeezed Chris in as an emergency in the afternoon and the doctor prescribed him some antibiotics. I also picked up the prescription for his new medication. Our surgery dispenses prescriptions, but the midazolam had to be ordered so I dropped that into Tesco instead which is nearer. They said it will take a week to come, where do they get it from..China?

Prior to that I had tried to get hold of the gastro nurse. The number I had was for one based in North Cornwall as there only used to be one in Cornwall. I was greeted with a message that she no longer worked for the NHS and to ring a different number. It seems there is a nurse in west Cornwall now too which is progress I guess. I got hold of her eventually and she gave me some tips and advice and to make sure the doctor took a swab.

I told Chris I would give him his first dose of antibiotics down his PEG as soon as the day feed had finished. It was nearly time, it usually finishes around 4ish. I asked him if the alarm was beeping yet and he told me he couldn't hear it working, bear in mind that I set it going at 10am, well...I thought I had. I checked the pump to discover that I hadn't even set it going and there was a litre bag of feed still waiting to be fed to Chris!!  I asked him if he was hungry and he said, 'Yeah a bit, I was really fancying a pasty.' We both laughed, I flushed the antibiotics down, then some more water and actually set it going this time.

Poor Chris, I told you I was a rubbish nurse, thankfully, in spite of that he still manages to love me.

Tuesday, 26 May 2015

No. 186. 'Two seconds ahead.'

Got to keep two seconds ahead.

Chris had an appointment today, his lovely MND nurse Tracey managed to get it brought forward as Chris was having a few issues with his breathing. I was never entirely sure whether the problems were with his lungs or higher up.

We had the usual wait. The doctor did the test for his blood gases as the nurse was having problems with another patient. Whenever someone asks Chris how he is he always says he isn't too bad. I am sure, hopefully way in the future, he will still manage to put his thumb up on his death bed !! I told the doctor that wasn't quite the case and that Chris was having some breathing problems and that we even dialled 999 on Sunday and only then Chris did tell him what the problem was.

We then had to wait about 20 minutes for the results to come back and then went in to see the doctor again.

He asked Chris lots of questions about the problems he was having. Chris said he feels like his throat is tightening and he can't take a breath in as well as finding it hard to breathe when lying down. The doctor told him that the blood tests showed a small rise in bi carbonates (CO2), but they were still at a safe level. He said he could help Chris out with his problems at night with Non Invasive Ventialtion and agreed his chest muscles were getting weaker. however he said that because Chris had quite bad bulbar problems in the throat area with his swallow, speech etc, he was most likely having spasms in the larynx and pharynx and that having NIV could make that worse. He was prepared to electively admit Chris in a couple of weeks to set it up, but wasn't convinced it was the best thing for Chris yet. He admitted that he knew very little about MND and recommended Chris spoke to Tracey to see what she could advise. Chris decided against going for the NIV just yet so the doctor will see him again in two months to review him.

When we got home I rang Tracey, luckily I caught her in the office. She knew straight away what the spasms were about and what to do about them. She explained that normally if someone inhaled a bit of dust or something similar then we would just cough it up. Because Chris's cough is quite weak he is unable to do this so any irritation, however minor, sends the throat muscles into spasm. Tracy suggested trying Lorazepam under the tongue, but I told her that we tried that the last time and it didn't work, so she said there was a stronger drug from the same family, which I have forgotten the name of, but it began with M, that can be used. It is given to people who have endoscopes. It is also put into the mouth to be absorbed through the cheek, she did say it was also an amnesiac! Needs must I guess. Tracy said she would get in touch with Chris's GP to prescribe it and also the district nurse Matron, to arrange someone to come out and teach how to administer it.

Well I guess this is sort of good news. It is good news that although his chest muscles are slowly deteriorating, they still aren't at the point of Chris needling assistance to breathe, so sigh of relief there.  Also while this new drug Chris is being prescribed seems a little scary, it will only be used during a spasm attack and if it relaxes him enough to recover then great.

Gosh this is all like a race, a real race for life, those with MND versus the disease, always running to keep two seconds ahead. One day, eventually, MND WILL take over and they WILL literally run out of breath, so the fight is there ...always ....

 We just have to do our best to keep them two seconds ahead.

* Edit* I believe the drug may be Midazolam.

Monday, 25 May 2015

No. 185. 'Be careful what you wish for.'


I knew a fair bit about you before you entered our lives. I knew you were a cruel and callous disease with no cure. I knew you were to be feared. I never dreamed though that you would enter our lives as you did.

My husband was a farmer, born and bred. It was the only life he knew and he loved it. He is also kind and funny, gentle and shy, but also very stubborn, a little OCD and very much a man of habit,

He always worked too hard and the only thing we used to argue about were the hours he worked and the little time we shared as a couple and family. I used to wish and wish that he could spend more time with us…yes..wish and wish.

It seems you decided to grant my wish MND..yes… like the Grimm Reaper with a sickly smile on your face, you sunk your tentacles deep into him and his fate was sealed along with the granting of my wish.

I regret that wish, everyday of my life. Take it back MND, take it back. Yes we do spend more time together, all of our time together. That is not a problem. My husband is still gentle and kind, he still smiles and rarely gets angry. He is patient with me when I forget to clamp his PEG tube and his stomach contents syphon out all over his tummy. He is patient with me when I deal with my own frustations and get grumpy with life. 

I would take back our old life though in a heart beat. I would take back having him working all those hours, for him to be happy and healthy. I would make sure I would never wish it to be otherwise.

I would have been so careful what I wished for MND, especially if I had know you had the power to grant them.

Oh and by the way, I hate you very much MND.

Sunday, 24 May 2015

No. 185. One scary disease.

Well MND is one scary disease and just when you think you think you have a handle on it, it can step up a notch and bite you on the bum.

I went into the lounge this morning to see Chris and I could see he was having trouble breathing. This has happened before, but it usually passes after a minute or two. After about 30 mins and after giving Chris a lorazepam to relax him, there was no change. I asked Chris if he wanted me to call the doctor and he nodded yes, he was getting quite distressed at this point which I am sure didn't help. Well 111 was useless, I was just put on hold so I thought maybe I should just dial 999 instead.

The rapid response was sent first from Helston and also an ambulance from Redruth which is a good 30 minutes away. Both turned up eventually about 35 minutes later, well we do live a long way from anywhere it seems. Both were very good, the first responder gave Chris oxygen which I wasn't sure was the right thing, but Chris's SATS did improve and as soon as they reached a good level after a few minutes they took him off it. They did all the usual examinations to check for infections etc, but we are pretty sure it is just his chest muscles not working as well as they should. They stayed quite a while until Chris was breathing better and did offer to take him to hospital, but we decided against that. A&E at Treslike, especially on a bank holiday weekend is never going to be a good experience. Chris is seeing his respiratory doctor on Tueday anyway about his breathing problems and the ambulance crew told us to dial 999 again should things get worse. I always worry that we are wasting their time and over reacting, stupid I know, but the ambulance crew reassured us that was not the case

Chris said his breathing generally feels worse, he can't see the respiratory doctor soon enough really. I think he may need Non Invasive Ventilation whereby air is pumped into the lungs via a mask to help the weakened chest muscles/diaphragm. I guess we'll see what the doctor says on Tuesday.

They must have thought I had called them under false pretences at first though as Chris greeted them with his beaming smile as always. Will nothing knock his happy disposition? 'You look well' they said, everyone says that, what more could you want than to look healthy while you are dying? ( I write that with a hint of bitterness and sarcasm.) 

It is hard to understand why sometimes his breathing is OK and then other times it isn't, but then sometimes his legs will give way for no reason if he tries to walk a short distance so I suppose the chest muscles are the same.

So yet another scary thing this disease has thrown as us, well like I said, MND is one scary disease.

Friday, 22 May 2015

No. 184. A double edged sword.

One of the blessings I have discovered since Chris was diagnosed, was finding this wider MND family of people who are living with or have been through, MND touching their lives. They are such wonderful, brave, kind, supportive people who have taken away the loneliness and a little of the fear this disease first thrusts upon you. They have shared their wisdom, love, experience and time, they are indeed a special extended family.

Along with all that means inevitably sharing their saddness and their pain when MND eventually takes it's toll and yet another MND warrior becomes an MND angel. There have been so many lives lost to this damn disease in the past few months, some of whom I have gotten to know a little via them or their loved ones. People I am glad to have known, even though it would never have been so, were it not for this common evil, MND, touching us all.

We get to share the happier times, special memories made, amazing fund raising challenges completed, endless, amazing campaigning done, but we also get to share the problems facing those living with MND, especially regarding care and access to the right equipment. To hear the frustrations caused by the lack of education in the caring profession, especially regarding how to care for someone in the later stages of the disease. To see the toll this leaves on their loved ones, especially when younger children are involved. MND is particularly cruel, but never more so than when it strikes those with very young children.

Sometimes I want to run away from all the pain and saddness as it is just a reminder of the inevitability of Chris's future and the fear I have for him and us living without him one day.

It is a double edged sword because in order to share the love, support and good times of any family, we also have to share the sad times and the bad times and give some of that love and support back. We have to give as well as to recieve. 

So I will take the love and support of my MND family, share the good times and the bad and do my best to be there when the sad days come for others. I will try to pass on that love and support along with any knowledge I may have gained along the way, to help those newly struck by this disease, no matter how painful it may be for me.

That is what family is all about, especially this wonderful MND family.

For all the MND Angels and MND Warrirors.

Tuesday, 19 May 2015

No. 183. The MND time bomb.

We went to bed as usual last night, Chris was propped up on his pillows. I read him a chapter of Jayne Hawking's book 'Travelling to infinity', he was nicely relaxed and ready to sleep.

I then heard him gulp suddenly, he swallowed a build up of saliva and had one of the worst choking attacks he has ever had. I slapped his back, I got him to sit on the edge of the bed, still no joy. I ran to the kitchen to get him a Lorazepam to relax him. In my panic I couldn't see them and then when I did I had to cut one in two. I ran back and stuck it under his tongue, Chris was still gasping and trying to breath. It was the look of wide eyed fear on his face that scared me the most. Gradually he started to relax and the spasm faded and he started to take a breath.

He then looked at me and said, "I need the toilet, that literally scare the s**t out of me." so I then helped a slightly more wobbly Chris to the bathroom.

Bloody hell.....this disease throws so much crap at you, (excuse the pun), there is so much inconsistency in the consistency. We know Chris might choke, or might have a breathing spasm or might fall at anytime, you just don't know when and most definitely know it will progress and get worse. It is like living with a time bomb, it ticks away, waiting to explode.

The exhaustion and fear it leaves in it's wake is heartbreaking to watch. I hate this damn disease so very much.

Saturday, 16 May 2015

No.182. Still breathing, still here.

There has definitely been a gradual deterioration in Chris's breathing. It has been noticeable at night of course, he can't catch his breath if he lies flat or if I lean against him, but the oddest things can literally take his breath away like smoke or dusty air. I stupidly burnt the pasta on the gas hob again (I just can't seem to get used to that!) and I suddenly saw Chris was gasping for breath. I had to open all the windows to get some fresh air in. There wasn't smoke or anything, just a burnt smell and it took ages for Chris to catch his breath properly. I felt really bad, especially because it was totally my fault.

Chris doesn't choke that often now, mainly because he rarely actually eats or drinks anything, but he does occasionally choke on his own saliva, very randomly and without warning. The breathing thing though worries me more than the choking at the moment. He will be seeing his respiratory consultant in June. He is OK most of the time thankfully, I just need to pay attention more and be more careful not to burn things.

What a bizarre and cruel thing this disease is. Chris still manages to have his whisky though. He has one about once a week, but we make sure he is in bed first. He dips his finger in the whisky to taste it and I put the rest down his PEG so that he can feel the effect. He only has a pub measure as it goes in rather more quickly than if he was slowly sipping it. I don't want too much to go straight to his head!!

One of Chris's friends and Jordan are finishing the repairs to his TR7 for him. I may get to take him out for a drive in it yet. That car is not my cup of tea, but Chris has a real thing for her. It would be nice for him to get out in it again if possible.

Other than that life goes on, we live each day adapting as we go, we still laugh far more than we could ever cry. Chris is still here, still with me, still smiling and managing to make the most of this new life that has been thrust upon him.

Please may he be with us for a very long time yet.

Tuesday, 12 May 2015

No.181. Glad for the MND status quo.

It's funny how quickly we settle back into our old routine, even though these routines are ever changing new ones.

Chris's tablet has been returned and repaired so he is able to practice with his Eye Gaze again. He seems to have settled into taking very little orally at all. Usually at tea time he might have a small pot of mousse or custard which takes him all evening to eat and nearly always he has choking issues with it. I give him a mug of water in the morning and he still has the same one by the end of the day. He still manages to enjoy a couple of Lindor chocolates at the end of the day before bed. I shall never get over feeling guilty eating infront of him. All his fluid and nutrition are via his PEG now. I know he is really grateful that he had the PEG fitted when advised. I think it has saved his life for sure from that point of view.

Chris keeps himself occupied with farm paper work or watching TV or reading. He doesn't venture out onto the farm much now. I'm not sure if he finds it frustrating to see things going on that he can no longer do, but he doesn't seem to pine for the farm like he did.

It was lovely today though when a local farmer popped in to see him. I am sure Chris must get fed up with my company all of the time, so it it was nice for him to chat with a different person and talk farm stuff. I think Chris enjoyed the visit. I wouldn't say that people stay away or anything, Farming is a particularly lonely life anyway really so visitors other than family were always a rarity even when he was well. He does enjoy it when people do pop in for a chat. It makes a change from the usual day to day stuff and to have something different to talk about.

I have been so surprised really how quickly Chris has adapted to each stage and moved on with it. I think that must be a good thing as far as his happiness and state of mind go. He doesn't seem to let himself get bitter. That doesn't mean he is happy about it, of course he isn't, but I think he realises getting frustrated and angry isn't going to change anything. 

My own emotions have been rising to the surface a little more often than I would like. I try not to let them get the better of me if I can help it though. I popped across to the house this afternoon and I felt so sad to see the garden . We planted some new plants last year and they are now starting to bloom, but they are surrounded by weeds and look so neglected. I feel like I have abandoned one of my children. It is strange to feel so guilty, but then it had been lived in prior to us moving for over 160 years, so maybe it feels sad to be empty too for now.

Chris gets very restless at night because he slips down from the pillows he sits up against. We are getting a new bed soon, one that rises at each end. I think this will be better for Chris and will keep him in a more upright position while sleeping. I did phone last week about him seeing his respiratory doctor, but the earliest appointment is in June. They just said if he had any serious issues to dial 999. Hopefully that won't be necessary. I'd like to think that particular need should never arise.

I am reluctant to say things haven't changed with Chris recently. The status quo is very welcome, but I don't want to tempt fate. I remember the consultant saying the progression would follow a straight line downwards, but for Chris it seems to go level for a while and then step down a big step. Everyone is different with this disease. 

For now the MND status quo is very welcome thank you.

Saturday, 9 May 2015

No.180. Wallowing.

Do you ever feel like wallowing? I do today. I don't wallow very often, not because I'm brave or anything like that, I just don't. I'm quite good at locking my feelings in a glass box, I can see them, but not feel them, but every now and then that box opens and I just want to wallow.

I think the days away opened that box for many reasons. Chris and I, we have just gotten used to living with MND at home I suppose, but doing something different and realising the things Chris can no longer do, it kind of hits home, especially comparing previous visits up to see Chloe and remembering that it was in Brighton that Chris's limp first became really obvious.

Also seeing Chloe with her first serious boyfriend, the acceptance that she is growing up and becoming independent and then thinking of the future days with the children that Chris will miss. Also the realisation that like many others who have lost someone to any kind of illness; that I will be living alone one day and I cannot imagine the emptiness of my world without Chris in it. I think about the things that I wish we had done together, simple things, but work always got in the way.

See I am wallowing and I don't like it very much. along with the wallowing comes the tears and I don't like them either because along with tears comes the pain and I have never been very good with pain.

I feel so sad having to watch this disease slowly take so much from Chris and us, it is so unfair and cruel. It is downright evil in fact.

I am not going to share this anywhere except for on Blogger. I don't want anyone feeling sorry for me. These feelings will pass and we all get melancholy sometimes. I am just tired and sad, pretty normal and expected I would think considering.

What ever I am feeling cannot compare to how Chris must feel. I don't want him to die such a cruel death. I don't want him or his smile to leave me. I would do anything if I could turn the clock back and make Chris well again.

This cloud will pass, these dark days always do, but for now I will wallow in my own self pity and grieve over what this awful, awful disease is taking from us all.

No.179. Travel and disability Day 2

We had a lovely couple of days in Brighton. By and large most places were accessible and if not most cafes had tables outside. We must have walked miles around Brighton and although Chris was in his wheelchair I think he found it quite tiring as he had to concentrate so much on where he was going and making sure he didn't hit anyone.

We had hoped to go and watch 'Spooks' at The Odeon', but unfortunately it was the one screen that didn't have a wheelchair space. We watched 'Far from the madding crowd' instead, not quite the same and although we love that story I found the film a little disappointing.

We had some nice meals out with Chloe and Tom. We went to 'Little Bay', a lovely Italian restaurant on the seafront which we try and visit every time we go up. Chris managed a little soup and ice cream, though the soup did cause some problems for him later even though it was puréed. They have a resident opera singer on a Thursday night. We aren't really into opera, but the singer comes round to each table. After we got over the embarrassed giggling, she sang to Chris and held his hand. It actually reduced him to tears and it was a very moving moment and it certainly became a wonderful memory for him. We had to go to 'Cremes' an amazing ice cream parlour in Brighton too. I think Chris though, may be getting a little fed up with ice cream.

At the hotel meal Chris just settled for ice cream yet again while we ate our main meal. He just doesn't fancy anything else and can eat so little anyway. I shall never get used to eating such lovely food in front of him, it just feels so very cruel. 
My brother popped down to see us at the hotel as he lives near Horsham and it was nice to catch up and for him to see Chris. It is hard for us to visit them now because of access.

The trips up and down both went well, though they were pretty quiet for both of us as Chris couldn't hear me very well over the noise of the engine.'Patience' our SAT Nav, was very good though and made sure I didn't get lost.

It was lovely to see Chloe and meet her boyfriend Tom. The time went way too fast as always.

It is quite an effort to get away now with all the equipment needed for Chris. It wasn't easy trying to find out why Chris's PEG alarm was beeping and showing a blockage and not ideal when you are parked outside of a petrol station. Thankfully I managed to sort it eventually. We also made sure that Chris wore slippers on the way home and not shoes as his heels were quite sore after the trip up. There are so many, many firsts with this disease.

We managed to read the local paper with our MND story in when we got home and Chloe has had a wonderful response after the MND association shared her song. We are not sure if her song will sell many copies, but it is Chloe's way of doing her bit to help her dad in her own way.

I will post the link to the article in case anyone wants to read it.

So we are back home and still taking life one day at a time.

Thursday, 7 May 2015

No.178. Travel and disability. Day 1 in Brighton.

I don't want this blog to be a moan fest even though I can be a 'Moaning Minnie' sometimes, just a record of our own personal experience.

The trip up to Brighton with our WAV car and Chris in the back in his wheelchair went relatively OK. I am getting more confident driving outside of Cornwall so that is all good. Anyone who knows of the A35 will probably know the little GingerBread house cafe stop with toilets just outside of Dorchester. We usually stop there, though before Chris was able to use the normal toilets. I thought it would be OK because I knew they had a disabled toilet. Unfortunately we didn't know that you have to have some kind of radar key, whatever that is, so Chris had to struggle using the normal loo. We got his wheelchair as close as possible and I waited outside and I also asked a bloke who went in to check on him. It wasn't ideal as I was scared he would fall. I did bring along some travel urinals, but Chris was reluctant to use one. We might hunt down a Little Chef or something on the way back.

We must have got some strange looks in a lay-by on the A27 as I had to get in the back of the car and flush Chris's PEG as his feed had stopped... That was fun, one of the rare times I was glad that I am short, I can almost stand upright in the back of the Kangoo!

We always park in the Regency Square car park in Brighton. It is expensive, but it is secure and always has space. It has plenty of disabled spaces and ramps to get out of the car park, but once out Chris was stuck. There was no ramp on the footpath from the car park and the kerb was too high for Chris to drive off. It was also blowing a gale so hard that I could hardly stand up plus I had two bags and one very heavy suitcase to contend with. I went back into the cark park and buzzed the help button. I told them that we were stuck and they said they were sorry, there wasn't any other way out, but they were looking into it. Fat lot of help that was. I think that is down to Brighton City Council to sort out though. I went back out side and while waiting for Chloe to come and help I saw that you could get into Regency Gardens on top ( the car park is under ground )' this in turn had a ramp out on to the main path. We both went into the garden and Chris was then faced with a short, steep ramp in the garden, totally the wrong gradient. Chris made a dash for it, but it was so windy and with the steepness of the ramp, it almost made his wheelchair tip back. That was a bit scary.

Ok, we arrived at the hotel, it wasn't far away, but the strong wind was blowing right against us so it was pretty exhausting. We chose The Mecure in Brighton this time as it was only a short distance from where Chloe lives. We arrived, tired and teasy, to steps and a revolving door. There was no obvious signage for disabled access at all. Chloe went in to ask and came back and said it was at the rear of the hotel. We now had to walk along a narrow road which acted like a wind tunnel. Once at the rear though the disabled access was good. We also discovered they had a small rear car park which was on a first come, first served basis so I managed to move the car this morning. At least it is next to the rear disabled access and I won't have to lug the suitcase back to the other car park.

It didn't surprise me that the disabled room was right at the back of the hotel, I understand the demand is probably minimal compared to the demands of fully abled visitors, but we are learning that when you have a disability you have to take what is on offer. Chloe said something along the lines of 'Oh you are like a second class citizen if you are disabled', and that is what it feels like sometimes.

The hotel room though was brilliant and the bathroom has the best disabled facilities we have come across so far in a hotel, so we are grateful for that at least and it makes up for looking out at the backs of other buildings. The staff are really helpful and the service brilliant, so no complaints on that score. 

Now we are off to tackle Brighton and see how access is for an EPIOC wheelchair. 

Edit: Our local paper, The West Briton, has done an article on Chloe's song and my blog and it is out today.  Hopefully it will raise MND awareness as well as more more funds.

Wednesday, 6 May 2015

No. 177 The funnier side of MND

MND is devastating and cruel and all those things plus some, but we aren't living under a depressive cloud 24/7, it does have it's funny side too.

Chris still manages to shower himself with the use of a shower seat, though he does need me to help dry and dress him. I was drying his nooks and crannies and he said he would like a bit of talcum powder, so off I went to get it. I came came back and shook it all over his 'Willie Wonka' and gave it a pat. He smiled, looked and me and said  ' I only ever usually put it on my feet!' I nearly wet myself laughing at that and Chris too, it was the funniest thing as he was so shocked and surprised at what I had done. We still giggle about that now.

We cannot and will not live in total misery and I know life isn't as bad as it can get yet, but I hope we will always find laughter in this dire situation.

There is joy too and today we are off to visit our darling Chloe and there will be hugs and kisses aplenty.

MND will steal many things from Chris, but he still has a wonderful sense of humour and a very cheeky side and there are still plenty of hugs and cuddles and a whole lot of love to go round.

So isn't going to steal everything....not if we have anything to do with it.

Tuesday, 5 May 2015

No. 176. Fighting for my gentle man.

Lying in bed Chris said 'How did I get in this state?' I think part of him still blames himself for getting MND. My response was an angry one. Bad luck, that's how, certainly nothing that he did. He then said, 'Well I have had a good life.' I got angry again. I told him to not accept it so easily, to keep fighting. He may feel he has had a good life, but I hadn't quite finished with him yet. I was looking forward to our future together, maybe even get him to retire one day. I had fantasies of getting a camper van and off we would go, strolling on beaches, hand in hand, long country walks, baby sitting grandchildren together one day, he would make a real cool grandad, this wasn't how it was meant to be. Yes, he has had a good life, but MND is stealing his future with us and that is so worth getting angry about and I know deep down, Chris feels this too.

Has this disease taken so much from him? Not content with taking the physical things from him I am afraid it seems to be sapping his fight too, hopefully I am wrong. It is easy for me to sit by and not understand what is going on in his head. Acceptance is a good thing I guess and Chris has always been a gentle, placid type of man, but I want him to get angry with this God damn disease. In his head I think, it is better for him to have it than someone else. No one should get this and from my point of view especially not Chris. That sums him up though. Don't get me wrong, Chris isn't perfect, who is? But he is one of the most selfless people I have ever met and him getting angry about anything is a very rare occurrence. I guess he isn't going to suddenly turn into someone else, just because he has MND. He is a stubborn bugger in his words though and MND has that to reckon with.

I however, feel cheated for him, for me, for our children. If MND was a tangible thing I would like to get my hands on it. I would beat it, pulverise it, stamp on it, scream at it, swear at it, kill it, erradicate it. I would get locked up till the end of my days if it meant it would be gone from this world forever.

I know I am not alone with these thoughts, I guess anyone watching a loved one die of a terminal disease feels the same.

So I have to fight for my gentle man, not something that comes naturally to me either, but MND has brought my inner fight to the surface. I will fight to keep him with me, to keep him happy, to keep the beautiful smile on his face, to keep him alive, I know for now, he still wants to live and in his own gentle way, to fight. 

You don't deserve this my gentle man... No one does.

Monday, 4 May 2015

No.175. Diagnosis day. 5/5/14 (5)

May 5th, happened to be my late father's birthday, but it was to be a day that would forever be etched in our minds for a very different reason.

May 5th 2014, diagnosis day.

Not long after the nerve function and electromyography tests Chris had another appointment come through. Something told us that being called in on a bank holiday Monday with a couple of days notice and with an 8am appointment didn't bode well. By now Chris knew that MND could be a possibility. I wanted him to be prepared just in case this was the diagnosis, if it wasn't then that would be brilliant.

We saw the consultant Dr Stewart bright and early at 8am on May 5th. He was very nice and he examined Chris and asked Chris lots of questions. In the end he said that after all the tests he would have to reach the conclusion that Chris had Motor Neurone Disease and that he was very sorry. There was no definitive test to diagnose MND, but after everything else is ruled out. MND is what you are left with. I had told him that I had looked it up online and I knew about the symptoms and more importantly the prognosis. I hadn't told Chris everything. Two to five years on average, that is what everyone gets told I think. Even though we thought we were prepared we still both cried, Chris especially when Dr Stewart said it was terminal and that there was no real treatment or cure. He mentioned Riluzole, which can extend life by about 3 months, but to date it seems to have had no effect on slowing things down at all . He told us that he would see Chris again in a couple of weeks to give time for the diagnosis to sink in and to explain what would happen next. Dr Stewart then took us to a side room where the receptionist brought us a cup of tea and left us alone to start this very long grieving process. 

It is not every day the one you love gets a death sentence. 

How could this be happening? Chris really had MND? Dear God, this couldn't be true.

We rang family while we were in there, breaking the news to them and after we went up to visit Chris's sister Denise and her husband and Chris's dad.

We needed to see the kids too, especially Chloe who was 350 miles away in Brighton and would have to deal with this news on her own. I had already booked to go and visit her by myself on the coach the following weekend a while ago, but now decided Chris was coming too and booked a second seat, so that we could see Chloe soon. She needed to see her dad and he her.

I guess we have all had many bad days in our lives, I know I have, but this day...this day was the worst day ever. How our life was to change, it would never be the same again.

Once MND enters your lives it never leaves......ever!!

Sunday, 3 May 2015

No. 174. The MND progression train.

One day a well farmer ate his usual breakfast. He was a hard working man, so started every day with a bowl full of porridge, bacon and egg on fried bread (much to the disdain of his wife), bread, butter and marmalade and an orange.

Then he unwillingly got on the MND progression train.......

A few miles in he found he couldn't manage the bacon or the toast, he was still working a little so he stuck to the porridge, bread, butter and marmalade and orange, sometimes he had scrambled eggs at the weekend.

The journey continued. He found the porridge was making him choke so he tried Weetabix. He changed the orange to a banana. He didn't bother with the bread, butter and marmalade because it was taking so long for him to eat.

At the next stop he had a gastric PEG fitted, just in case. He also had to swap the Weetabix for Ready Brek as the Weetabix was making him choke. He wasn't getting out on the farm till the afternoon as it took him most of the morning to eat his breakfast. 

The emergency cord had to be pulled as this train progressed, in order to pick up some special milk shakes and night feeds to supplement his meals, thank goodness for the PEG. Eating generally was causing some real choking problems. They also loaded up some walking aids as that was getting more difficult too.

The train meandered along for a while, phew, he wanted to just make the most of the journey, then bam........the train came to a halt, something was blocking the track. The farmer had given up working on the farm a few stops back, his legs wouldn't work very well either, or his hands, or his speech, but he couldn't eat anything as everything made him choke. The train had to wait for the blockage to be cleared, for the daily PEG feed to arrive...the fuel to keep the farmer alive. 'OK, we'll let him have that.' said the driver of the MND progression train.

Now the train is still progressing, the farmer doesn't know when the journey will end, but knows there will be more unwanted stops along the way before the inevitable derailment. He waits for his wife to help him dress in the morning and then connect him to his feed, his life support. Those fried breakfasts and big meals he used to love have become the stuff of fantasy and dreams. The only food passing his lips might be a custard pot or a couple of Lindor chocolates.

For now there is no way for the farmer to get off that train. Once on ...that's it....

He hates being on this train, he wants to get off, to get back in those fields with the cattle he can see whizzing past the window, but for everyone he has a smile, this brave man, who once got handed the wrong ticket..... A ticket to hell...on the MND progression train.