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Monday, 30 June 2014

No.14.Virtual hugs.

When the diagnosis of MND first hit us as a family, it was terrifying and unbelievable. So many questions, why, how, what? You feel so very alone because we knew no one who had the disease. Everyone you tell initially, family and close friends, they all cry with you and are all scared for you. Don`t get me wrong, our families have been wonderful, I`m not sure what we would have done without their support, but unless you are going through it , no one can truly understand .Slowly, via the MND association and social media, a positive thing in this case, I have discovered we are not alone. There are other people going through what we are going through, at different stages of the disease, brave people, battling on and fighting. There are carers who are doing the very best that they can for those they love. There are others, who are tirelessly fundraising and raising awareness and it suddenly felt like many invisible arms were bringing us into a very unique fold. It gives us hope as individuals and comfort collectively I think, that it may be a fight that one day some will win due to a cure being found. We know we have a long way to go as far as MND is concerned, Chris is still in the early stages, but it is comforting to know there is always going to be someone out there , who will truly understand what we are going through. So thanks in advance and love to all those with MND at this moment in time, may we give you a virtual hug back.

Edit: Just watched Ian Pratt`s amazing interview on This Morning, talking about the videos he is leaving for his daughter. I try not to allow myself to cry too much, but every word he spoke hit home, my heart broke for him and broke for us and everyone who has MND at the moment. Ian has become  part of our virtual world and I send him and his family the biggest hugs. There is no cure, but there is so much love and there has to be hope too. Excuse me while I wipe a tear. Thank you Ian for raising awareness.

Sunday, 29 June 2014

No.13.Stolen futures.

After our lovely family celebration yesterday and reading about the very brave Ian Pratt, who also has MND and the videos that he made for his daughter for when he is not around, it kind of hit home about the celebrations that Chris will miss. He is more fortunate than Ian, he has seen his children reach adulthood, but the grief about the future lost is still there. None of the children are close to having families for various reasons, youngest daughter wants to travel after uni and so she should and it hit him that he will probably never meet his grandchildren or us grow old together. We have to live in hope though for the more reachable future, Chloe`s 21st, her graduation from BIMM in 2 years and maybe even our 25th wedding anniversary in 5 years. Chris is fighting to reach these events and God willing he will. Today my heart goes out to all those with MND, who have had their futures stolen, and I pray for a cure so future sufferers may get theirs back. The idea of writing this blog is to raise awareness, to give a taste of our reality of this disease and to hope that awareness multiplies fundraising and brings that dream of a cure ever closer.

Saturday, 28 June 2014

No.12.Memories made.

Memories can be made from the simplest of things. It was our youngest daughter`s 19th birthday today. She wanted to spend it making her own cake and cooking the meal, a little unusual, but it was her choice and she did a wonderful job. She also wanted to spend the evening playing Mario Cart, especially with her Dad. He did a pretty darn good job staying awake, even though it was surprisingly tiring for him. We had such a giggle over his and my rubbish driving. We had fun though and it was a day for Chloe`s memory bank and ours, a day she will always remember. I pray there wll be many more and that MND won`t be in too much of a hurry to steal them away.

No.11.Time to smile

Today is our youngest daughter`s 19th birthday. It isn`t time to dwell on regrets for the future, but to celebrate today and bloody well have some fun. You ain`t taking this away from us MND.!

Friday, 27 June 2014

No.10.Time to adjust, time to think

Our hands are important to all of us and if one or other is incapacitated in someway, we would certainly know about it. MND is creeping up on the hands slowly. Chris finds he can`t grip the tools he uses to maintain the tractors as well, he finds using a knife and fork more awkward now and you can actually see the muscle wasting in his hands. I have to do buttons up for him and he asked me to buy him some bananas with a zip, so they would be easier to undo. Yes, inspite of how it seems, we do see the funny side in all these situations sometimes. More recently he has noticed when he is outside on the farm, first thing in the morning, that his hands don`t work so well, especially in the rain, it doesn`t even have to be cold. Of course none of us know how this will have progressed by the winter, but it made me think that maybe he isn`t going to be able to do even half as much as he does now, outside in our cold, wet, damp Cornish winters. We are are quite exposed here and the wind chill can be a bugger. That`s such a hard thing for him, letting go of the farm. He was born here, it is his life. I hope MND gives him time to adjust. It`s kind of scary wondering how this will progress. there are plenty of things to help with the physical things, but I`m not sure how easy it is for anyone to adjust mentally as you slowly lose control of your body.

I have to admire Chris though, he battles on with that beautiful smile of his, while I ponder the future and get over whelmed with fear. The thought of losing him, well I can`t even acknowledge that yet, though sometimes that thought peeps it`s head around the door, but I slam it shut fast, not yet, I`m not ready for that, go away. I fear more at the moment what this bloody awful disease is going to do to him. A man who has worked outside all his life, every day of the year barring the very rare holiday or a trip to see our youngest in Brighton. How will he cope when all that is taken away? I suspect better than I think, but only someone who`s going through that can truely know, I can only imagine. When the sadness settles on me I think of my brave husband , trying to carry on as best he can, I feel sad at the loss that is to come for him and the loss that will eventually come to us as a family. This is such a cruel disease, to slowly take his physicality , but leave the intellect in tact. The reason I write this candid blog, is because I want people to know what MND, for us anyway, is truly like. There are so many wonderful people out there spreading awareness, this is just my way. We have a common cause though, we all hope and pray for a cure, the best gift for all those around the world being consumed by this disease right now.

No.9.Manifestations of festiculations

I knew a little about MND before it darkened our lives, but I didn`t know about the muscle twitching, or festiculations, which is their medical term. We`ve all had a twitch now and then, I get one in my eye sometimes, but with MND it is a whole new ball game. Chris`s muscle twitches start at the top of his head and end at his feet. They twitch 24/7 everyday. They even include his tongue.  When I cuddle him, I can feel his body twitching away, never letting him rest. I tried to think what it reminded me of. I guess if each twitch was a light and he was in the dark, it would look like 100`s of fire flies switching on and off, but then I thought no, it was as if the muscles were struggling to hold on to their individual lives, trying to fire back up into life, before the black shadow of MND consumes them and the image of a shoal of fish just harvested from the sea came to mind. The way they flap about on deck, gasping for breath in our alien air. OK, I guess that`s just a bit dramatic, but I hope you get the picture. The physio said the festicualtions alone are very tiring as the muscles are always working. This all adds to the unwanted calorie burning and weight loss due to muscle wasting and although we try to get on with each day without MND on our minds, for us it is a never ending reminder at this early stage, physically for him and visibly for us, of it`s slow onslaught.

Thursday, 26 June 2014

No.8.Kindness in it`s many ways

Chris had his obligatory rest after lunch and off he went back out to his beloved farm. While he was out I had a phone call from the MND Connect people. They are a help line for people with MND and he passed our details onto the Cornish branch. A few minutes later a lady from there telephoned, also very kind and helpful.
It made me think about the kindness that people have shown. Living in a little village word spread fast about Chris having MND and it showed the different ways people react and show that kindness. Some people were on the phone straight away, reacting as if Chris was already wheelchair bound and offering fancy hospital type beds and stuff like that. I kindly explained that Chris was a long way off that stage yet, but thanks anyway. One kind neighbour turned up with a bottle of malt ( he`s knows Chris well) to cheer him up he said, that brought on a few tears I can tell you, we thought that so very sweet. Other people fall into the `cross the road bracket`, they don`t know what to say I guess. I noticed that first when I visited the village shop and one of the ladies in there, usually chatty, was, well different with me. I came home and spoke to Chris about it and I realised she just didn`t know what to say, so `avoided` me instead. I`ve heard people say that can happen when you lose a loved one or have cancer or anything like that, but this was the first time I had experienced it. When I was organising our `Bake it` day I purposely seeked her out to ask if I could put a poster up in the shop. She said yes and then immediately said she was so sorry and didn`t know what to say, a phrase we`ve heard many times and I said there is nothing you can say. That broke the ice and after that things went back to normal and she helped  with the `Bake it` day by baking a cake and promoting it for us. I think men can be the worse for this though, a few of Chris`s male acquaintances have avoided him. I guess, because they don`t know what to say. We don`t blame them, it`s just how some people react. Maybe they think we will start balling our eyes out in front of them, I don`t know. I suppose it is up to us to approch others as if nothing was wrong and take their fear away. If only they knew how scared we were, having to live with this disease.  By and large though, we have been shown nothing but kindness and generousity in abundance. It retores your faith in the human race.

No.7.Being normal

Chris came in at the end of the day yesterday beaming, he`d been out more hours than he should and his speech was dreadful, a sure sign he had done too much , even if it was just tractor work, but the thing is he was happy. Who am I to say he shouldn`t do it ? His future is going to be very different and sometimes living for today, doesn`t necessarily mean fulfilling buckets lists or travel to far flung places, it means living each day as you did, before MND cast it`s shadow over our lives, just doing the normal stuff and sticking two fingers up to it. I know there are a lot of brave people out there fighting this disease and I`m adding Hubby that list.

Wednesday, 25 June 2014

No.6.The voice expresses our soul .

I know the progression of MND is different for every body who suffers from it. Hubby`s first signs were the limp, and his walking is slowly deteriorating, he can`t stand up for too long either without support, hence the showering problem, but the most obvious progression has been his voice. It is most apt I guess that one of the MNDa`s June awareness slogans was `Don`t let me die without a voice`. I already do the business phone calls for him as for some reason his voice is worse on the phone and he is scared people will think he is drunk. I said say you have MND, but then the person on the end will ask what it is, so it is just easier if I do it.

We have a laugh and a giggle sometimes at Chris slurring his words, not to be cruel, but to try and make light of it. Sometimes he just can`t get the words out. He`s not a big talker and yesterday showed how tiring it can be for the voice when he does talk for a long time. Our youngest daughter even joked how sometimes he sounds like a Dalek, which is a bit weird, but true and I noticed his singing voice has weakened and gone up in pitch.

What a complicated thing the voice is , something we take so much for granted, so many muscles used in it`s creation. More importantly it is how we express our self in the most basic way, the first tool we ever used as a baby to get our message across. I know we`ve all had someone in our life that we wish could lose their voice for just a while, because they are boring us to death or driving us round the twist, but imagine the actual reality of never being able to talk again ? I think that is pretty scary. OK, so the speech therapist down here said Chris will have access to the top of the range IT communication tools, but it must be like living permanently in the virtual world. You can type out words, you can get a computer to talk for you , you can print emoticons, bloody hell these days people can even work a computer with their eyes, but it can`t express for you, it can`t bare it`s soul for you. I`m dreading the day when Chris loses his voice for ever. Please MND, don`t take Chris`s voice too soon and I know there will be much worse to come after that, but for now, let him live with his voice.

Tuesday, 24 June 2014

No.5.Privacy and normality.


Some people won`t approve of this blog, they might prefer things to be kept private, but if we want more people to know about MND, we must be prepared to talk about it, how else will people understand? I don`t mind sharing our life this way, kind of anonymously. Face to face? that`s a different matter. Chris and I are two of life`s introverts, but he`s quite happy for me to do this.

It`s funny how emotions can catch you unaware. Most of the time it`s like we are outside looking in. We talk about it a lot, but are kind of detached from it if that makes sense? A kind of self protection I guess. I was picking our 18 year old daughter up the other day and we were talking about her dad and I told her what he had said about us growing old together and I burst into tears, while driving ,it took me quite by surprise, I was really choked up. Our youngest daughter doesn`t show her feelings much about MND, but I know she was glad to get home from uni and see her dad again. Our eldest daughter has cried quite a bit, even my hard as nails son, shed a tear. I read somewhere that this all becomes the new normal and that makes sense. I guess each stage of this disease becomes the next new normal. Would just like this normal to last a little while longer if you don`t mind MND.

No.4.Trying to stay positive.

Chris started Riluzol today, hope he doesn`t get any side affects like dizziness. Still being able to drive a tractor is keeping his head above water. The physio phoned and said the OT would get in touch about the shower seat and come out and do an assessment next week. He`s got to see the speech therapist and dietician next week too. So many appointments, but at least we can`t complain about the support from the NHS, it`s been brilliant so far.

Chris had a visitor this afternoon who stayed about an hour. He was quite exhausted when the visitor left, he could hardly talk. You forget that the tongue is a muscle too and I guess it gets tired like the rest of his body. Just thought a silly thought, I`m not looking forward to the day he can`t tell me he loves me anymore, let alone not be able to talk at all. He tells me all the time. It`s too much to bare some times thinking what this disease will do to him. Got to keep fighting though and never give up.

No.3.Life goes on.

       Fighting MND the only way we can, by trying to raise money for research and a cure.

23/6/14 

Well, I`ve been feeding Chris up, full cream milk, mayo on everything, so weird for me as someone who has spent her life dieting ! He has good meals anyway and found the 2 milkshakes the GP prescribed a bit too much, so he cut it down to one a day. It`s kind of paid off as he gained 4lbs which was brilliant. The consultant took some blood tests too and he can start on Riluzole. This is the only medication or treatment available and it will give him an extra 3 months, better than nothing I guess. He starts it tomorrow. His mood has improved too which is great.

We try to be positive, but it hits you now and then. Sometimes Chris says things like he probably will never meet his grandchildren and that he thought we would grow old together , those things choke me up, but by and large we try to get on with life. He can still drive a tractor and checks the cattle everyday, but the heavy work has all fallen on his brother and our new apprentice, hence changing the way we farm. The farm is Chris`s life, it is tough for him letting go. The health professionals all say he should rest more, but one day he won`t be able to do anything, so I try not to nag too much. The farm has been having it`s own problems and father-in-law, at 92 , is not well, though still very much in charge, but thankfully, sister-in-law and her hubby have helped get things back on track. Life is a bugger sometimes.

On a more positive note, just after Chris was diagnosed, I saw on the MNDA site, that they promote `Bake it` days so I went ahead and arranged one in our local village hall, coincidentally on the 21st, I had no idea it was Global MND day at the time. People were very kind and donated lots of cakes and money (including £100 from the parish council) , though I was panicking on the day because the turnout was low due to people having other commitments. At the end of the day though, every cake went and we raised over £600 which blew us away !! Seems the village were touched by Chris getting MND, it made us feel very humble. Our youngest daughter, a songwriter, entertained us with her originals and covers too. We did it all as a family , with no other help, that was important I think, for us to do this together, united in our fight against MND.

Yesterday, Chris said he was having trouble standing up in the shower, so I`ve had to chase up the shower seat that is on order from the OT team ( occupational therapist ). A sign of this disease`s slow onslaught, it is obvious with his speech too, which is slowly getting worse. Leave my husband alone you hateful MND !!!

Monday, 23 June 2014

No.2.Facing reality

14/6/14

It has been a while since I wrote that last post. Life has been chaotic.Chris has seen his MND nurse who came down from Plymouth, she was lovely, a physio came home to see him and they will come once a month, he`s seen the speech therapist, the consultant again, the GP again, now he`s waiting to see a dietician and the respiratory doctor. Life has been a little crazy. We have also got our Lasting Power of Attorneys done and wills updated, boring, but necessary stuff.

 The family have united to get the farm sorted so that it can still be run with Chris not being able to do as much. Everyone has been very kind, but they always greet you with `I`m so very sorry`, which reiterates the fact that this bloody disease that has chosen my husband , is terminal ,with no cure and then they don`t know what to say and I say there is nothing to say. Chris and I have cried a lot, and the sad irony is that we spend more time together now, something I always wanted, but not this way. We still laugh a lot too, which we have to do. Can`t let bloody MND have all it`s own way.
 
 We took a trip up to see our daughter a week after diagnosis. She is at uni, a long way from home and we needed to see her and her us. We spent a lot of time cuddling in the hotel room as well as venturing out with Chris in a wheelchair. He can only walk short distances , so we borrowed a wheelchair for him. That was quite the learning curve for all of us.

A trip to the GP was also in order as Chris was very low in mood and blaming himself, that he must have done something to get it, which of course was rubbish, no one knows the cause. The GP put him on a low dose of antidepressants . She also weighed him and worryingly, my skinny Hubby had lost 4lb since February so energy milkshakes were prescribed, plus a higher calorie diet for this man who eats pretty well anyway. Sometimes I think this is all a bad dream and why did MND pick my darling husband, a sweet , kind soul? but why should it pick anybody? Like he said to me, he wouldn` t wish it on his worst enemy.

No.1.Confirmation = devastation




I started this blog as a way of keeping a record of how MND will affect us a family as well as my husband Christoper, who was diagnosed with this dreadful disease on the 5th May 2014.

*Edit. Thought I`d add a little about ourselves. We are a farming family. My husband farms with his brother and we live in Cornwall. We have 3 children between us aged 18, 24 and 26. We know no one personally who has ever had MND and finding it had chosen my husband was a bolt from the blue.

12/5/14

A week ago my 56 year old husband was diagnosed with MND. He`d had a limp for quite a few months and after constant nagging and noticing his hands were feeling weak, he finally visited our family GP in February 2014. As soon as he came home and said he was being referred to a neurologist, alarm bells started ringing. As most of us would, I looked it up on the internet. I scared myself to death, praying what I had read was wrong. After 3 months of tests we had the result we dreaded. Talk about being knocked for six. We both cried when the neurologist told us, especially Chris when he said it was terminal.The receptionist kindly put us in a side room and gave us a cup of tea. The first of many kindnesses. May 5th 2014, the day that change our lives forever.