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Monday, 30 March 2015

No. 165. Continuing changes.

Life has been so busy lately, preparing for our move. I am back and forth from the bungalow decorating and taking stuff over with the help of Jordan, Karl and Tamara. Here and there, are both in a state of chaos and I am very tired, but it will be worth it when we move.

Chloe came home for a few days last week which was lovely and we went to Porthleven for an afternoon. It was the real first opportunity for Chris to try out the new wheelchair and it coped with the hills brilliantly in fact Chloe and I couldn't keep up at times. We went into the Harbour Inn for a coffee and access was fine, though the wheelchair couldn't fit under the table. We had a cappuccino served in a cup and saucer and for the first time Chris was unable to hold the cup and saucer up, it was too heavy for him, so I had to get a straw and hold the cup for him while he drank it. It was quite busy in there and I could see Chris felt really uncomfortable. Eating out now is becoming an awkward experience as it makes Chris feel so embarrassed. It is easy for me to tell him not to worry, but he is a proud man and although no one stared at him, he felt exposed I suppose.

There has been progression generally in his physical strength. He still walks short distances with a stick, but at times he is very unstable so I am not sure how much longer he will be able to walk. His arms are getting weaker too. He used to drink the daily Fresubin shakes, but it would take him three hours to get through one, so I have pursuaded him to let me put them down his PEG. He has a tiny soft sandwich for his lunch and sometimes just ice cream for his tea, but that is OK, he has very little appetite now. Unlike me he has always been someone who ate to live and not the other way around. He is getting all his nutrition via his PEG during the day and at night, so is still maintaining his weight. It means he can just eat what he fancies, like those Lindt chocolate balls or a hot chocolate with Bailey's. He has thrush in his mouth again though, just another side effect of weak muscles we have been told. 

Soon we will be in the bungalow, it will be a wrench for Chris, but he will be able to use his new wheelchair more as there is more space and there is an easier to access shower. 

On slightly more positive notes, Tamara is slowly raising funds for her JumpFest event in June, she is doing a tandem parachute jump and Chloe is releasing her single 'Levels' on iTunes on April 10th to try and raise some funds too.

MND truly does change lives in so many ways we almost can't remember life before MND, this becomes so 'normal'. I can see the progression in Chris, but I still can't bare to think ahead too much. Taking things one day at a time though, well that isn't always that easy.

Monday, 23 March 2015

No. 164. I HATE MND!!!!

I hate this b*****d disease that is MND so much. To see what it is doing to my darling husband, who never complains and always smiles, breaks my heart. To see him struggle to get out of bed like an old man and to choke on fresh air. To see him hobbling with a stick, to realise he is hardly eating any normal food now. To hear his speech slowly get worse.

To also hear about those that have lost their lives to this vile disease and to those that are living near the end in such difficult circumstances is also heartbreaking and quite frankly scares the crap out of me.

There is hope on the horizon with a drug in the US that has shown promising results in the early stages of testing and stem cell therapy somewhere else, but nothing for now, this minute, that can make this awful disease stop in it's tracks.

MND, I bloody hate it, hate it, hate it !!!!!!!!!!!!!!!!!!!! It is cruel beyond belief. It is slowly taking the love of my life from me and there is nothing I can do to stop it.

Friday, 20 March 2015

No. 163. Countdown to diagnosis (2)

So March 21st 2014 arrived and off we went to Treliske for Chris to see the Rheumatology doctor, I still hoped they would find something else wrong, perhaps Chris just had some kind of muscular problem.

I didn't go in with Chris to see the doctor, I didn't want him to be overly worried. It seemed like he had been in there for ages. When he came out he sat down and told me what had happened. The doctor had examined him from head to foot. She asked him if he had noticed his muscles twitching in his neck and arms. She referred him to have a spinal MRI, nerve conduction tests and electromyography and possibly a muscle biopsy. Nothing was said to him about it what it could be. Of course when we got home I Googled those tests and found out they were to rule out all kinds of conditions. If those aren't found, the only thing left is MND. There is no specific test to diagnose MND, diagnosis is just a process of elimination. Never have I wanted tests to find something else so much in all of my life. Chris still had no idea what might be wrong with him.

The waiting continued, meanwhile Chris's symptoms had progressed a little more. The muscle twitching (festiculations) were getting more obvious as was the slurring in his speech. I prayed hard that it wasn't MND, but I did not have a good feeling about it.

A year on from that day, how life as changed. Chris cannot walk very far at all and then only with a stick as his balance is very bad. He now gets around in an EPIOC wheelchair. His hands have gotten weaker and his muscles generally are showing obvious signs of wastage. His speech is deteriorating quite fast, as is his swallow and he actually eats very little now. He used to have a lovely singing voice and now that is gone. He would still rather drink his daily shakes rather than have them down the PEG tube, but it takes him so long to drink or eat anything, so the actual process of doing either seems to take up most of the day. He seems to choke on most things these days too, I am pretty sure that is why he doesn't really fancy much to eat. Farm work is restricted to office work only, he can no longer do any kind of physical work on the farm. He can no longer drive a car or any kind of vehicle and he can no longer climb the stairs so we now sleep in the dining room.

This disease has taken so much from him in the past 12 months. I would be lying if I said I wasn't scared of what the next 12 months will bring. We are very fortunate to have a bungalow to move in to, but it is taking up so much of my time at the moment trying to get things ready and organise the move, that I have to leave Chris for a few hours a day. I hate leaving him for so many reasons, time is so precious. Who would have thought that 12 months ago Chris would be leaving the home he was born in because of this damn awful disease. 

How we hate it !!!

Wednesday, 18 March 2015

No.162. MNDA Cornwall Lunch.

Yesterday we went to have lunch in Newquay at the Porth Veor Manor. It was a bit of a trek for us as it is a good hours drive in decent traffic from where we live, but we picked up Chris's sister Denise, who came too, on the way and she directed me as she knew where the hotel was so that was a great help. It was also the first proper long trip out with the WAV car and Chris in the back in his wheelchair. It went fine and getting Chris in and out of the car is pretty quick really.

The hotel was lovely and everyone there was too. We met Ba again, Chris's MND AV and also caught up with Tracy his MND nurse. They are all so supportive and helpful. What a lovely bunch of people everyone there was, they were all were so very kind and all have been touched by MND in one way or another. We also caught up with Christine and her daughter Emma, great MND stalwarts and now I am glad to say friends. I am so pleased to have gotten to know them both, they are very supportive to us and the wider MND community in Cornwall.

The meal was really nice, though it was a bit of a struggle for Chris. We chose something that he would probably be able to eat, cottage pie. He didn't do too bad with the mash and mince, but couldn't eat the veggies as they were too hard. He could have had it pureed, but even at an MND event he didn't want to stand out as different. The puds on offer weren't really suitable, but they had some ice cream so Chris had that instead. At home his ice cream is usually melted by the time he has finished it so he ends up with ice cream soup which he still always eats. Because he takes so long he was still eating his melted ice cream by the time the waiters were clearing the tables. He was a little indignant that someone whipped his bowl away when his back was turned, but we understood they needed to get on and clear things. My meal was lovely, I even won a couple of little prizes on the raffle which is always a bonus, so all in all it was a lovely get together.

Chris does struggle with his meals now. He just doesn't fancy very much. I am so glad he had his PEG fitted when he did. I can't believe this man who used to eat enough for three people is now struggling to eat something so simple as a bowl of ice cream. This is one cruel disease. At least the PEG feeds are keeping his nutrition levels up and he is still maintaining his weight.

The irony of this disease is that we would never have gotten to know such lovely people if MND hadn't entered our lives, but it did and the one blessing is the never ending support that is out there from the wider MND family and for that we are truly thankful. 

Sunday, 15 March 2015

No.161. Subtle changes.

We will be moving to our new home in about three weeks and in many ways it can't come soon enough really.

The progression of MND is relentless, though sometimes it can seem obvious and other times it is rather like watching your children grow up, they physically change, but we never really notice until they out grow their shoes and clothes. MND can be like that, the changes can be so gradual that you don't notice them at first.

The speech therapist popped in to see Chris the other day. She wanted to see the Tobi Eyegaze in action as Chris was the first of her clients to get one. When she went to leave, Chris did what he always does when someone leaves, he gets up to say his farewells. Getting up out of the armchair he usually sits in is a little tricky, on our sofas in the lounge it is really tricky. He managed to stand up after some effort and then promptly fell back down again. We had a giggle about it and he tried once more, successfully this time. This evening we were sat in the lounge on the sofa's again and Chris really struggled to stand up out of the chair. I tried to help, but wasn't much use, but he did eventually manage to stand upright, only to fall back down again like before. Again we laughed about it while he tried again. He then looked at me, smiled and said 'I've had it haven't I?' and I said 'No, not yet, not by a long shot.', but there was this recognition in him, that things are slowly getting worse. 

Chris hasn't used his wheelchair much in the house yet, partly through stubbornness and partly because space is tighter here. Our new home has a more spacious layout and everything is on one level, so will be easier to get around in. I think once we are over there him using the wheelchair will help give Chris more independence and be comfortable for him. He is starting to get sore shoulders and I think that is partly due to the chair he spends most of the day in. It is quite firm and it may be that which is making his shoulder blade area sore. We will have to keep an eye on that.

Inspite of the obvious progression, Chris still smiles, I don't know how or why, but he is cheerful most of the time. He rarely complains and has never said 'Why me?' He had a lot of self blame at first that he must have done something to cause it, but after numerous talks from the MND professionals, he quickly realised that he hadn't. No one really knows why some people get it and others don't other than something causes a genetic problem within the motor neurones.

So life goes on. We are preparing for our move and looking forward to seeing Chloe next week when she comes home for a few days break. We will always wish things were different, but they never will be. Thankfully we have learnt that we don't drive each other nuts spending so much time together, well that has to be a blessing don't you think? OK, maybe some of the TV programmes Chris has revisited, well he never had much time for TV as a busy farmer, drive me nuts sometimes, but I just go off and do something else for a while.

These subtles changes invade Chris's body slowly and relentlessly, but we are grateful the progression isn't horrendously fast, so there is always something to be grateful for and hopefully he will be able to keep smiling for a very long time.

Monday, 9 March 2015

No. 160. Grrrr!!!

Grrrr, I am so angry and p****d at this disease. Seeing it slowly take a little bit more of Chris everyday... I just hate it. His speech was worse today, I hope it's just a blip, he has been very unsteady too, more so than he has been. MND is like a lava flow, there is nothing you can do to stop it. 

I've told him he is not allowed to die on me, not for years, I won't have it, he has to stay here with me. I wish we could hide from it, take cover, fight something. Chris still smiles, but I know it is getting him down, of course it is...damn you MND!!!

I am so angry too that so many many MND warriors have been taken this month. It has been such a sad couple of weeks. Yet another member of our MND family, who I have gotten to know a little, has lost his life, five so far in March alone. It just brings home how evil this disease is.

Why Chris? Why us? Why anyone? Why this God damn awful disease? Why is there no cure ? Why???


Saturday, 7 March 2015

No. 159. Facing reality.

It has been a difficult week for anyone who has been touched by MND. Four MND warriors have lost their lives to this horrible disease and joined the many MND Angels that have passed before. Our hearts go out to all of their families. I personally only knew of one of them, but that didn't make it any less painful, in fact I am ashamed to say that I wanted to hide away from all the kind words and condolences that were being posted for them on line. It was just too much of a reality check, this disease spares no one, age, colour, gender, it matters not to this disease, once it has you in it's grip the end is inevitable. You are on death row, yet have no idea when the end will come.

The only way we can all fight is to raise awareness or to fundraise to help find a cure. Our eldest daughter Tamara has always wanted to sky dive so has signed up to take part in the MNDA Jump Fest in June down here in Cornwall. She is braver than I as heights terrify me, but she said that no matter how scary it will be, it is nothing compared to living with or watching someone you love, live with MND.
She has a JustGiving page to fund raise for it. 

I am busy preparing for our move to the bungalow. I hate leaving Chris, even for just a couple of hours, to go and decorate. It is partly because I worry he may choke or fall while I am out and partly because time is precious. He is happy at home sorting out farm paper work though, we always had our own rolls in our marriage and that at least hasn't changed too much.

Chris showed me his arms yesterday, the muscle wasting has become more obvious in his lower arms and hands, what muscle there is, is floppy, his wrists look so thin. He is maintaining his weight though which is good, I am so glad he had the PEG fitted when he did.

Even living with MND as we do, it is still easy to go into denial a bit about what will happen as time goes on. Hearing about people who have died with this disease, well it is a real and painful reality check.

I still can't think that far ahead, I don't want to, we are still trying our best to take things one day at a time.

Sunday, 1 March 2015

No.158. Countdown to diagnosis (1)

Chris had been limping for quite a few months. I would tease him about it in between nagging him to see the doctor. People were commenting on it. Late one Sunday evening in February 2014, someone came to the door to say we had sheep out on the road. Chris went out to fetch them back. When he came back in he was quite upset as he said he could hardly walk up the lane as his legs were like jelly.
I made an appointment for him to see the doctor the next day. 

On February 11th 2014 Chris visited our GP. I thought he would comeback with a diagnosis of arthritis or something similar. He said the doctor told him he had a dropped foot and did a blood test to check muscle function. She was referring him to a neurologist, I thought that didn't sound good and alarm bells started to ring, though I kept my fears to myself. Chris had also been complaining about weakness in his hands and had been having some terrible cramps in the back of his thighs and his stomach. He had also started to slur his speech a little. I Googled the of the list was Motor Neurone Disease. Oh my God no I thought, not Chris. please let it be some thing else.

A few days later Chris had a phone call from the GP. He was being referred to a Rheumatologist now. OK, thank goodness I thought, it must be something else. I had also noticed his body was twitching a lot now too.. all the time. My gut feeling was not good.. Please let me be wrong. 

Two weeks later he had an appointment arrive to see Dr Endean, the Rheumatologist, on March 21st 2014 at Treslike.

Now the waiting began.