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Thursday, 27 November 2014

No. 127. Tears and gratitude.

On Saturday Chris's sister Lucille came to visit with her son and grandson. It was lovely for Chris to catch up with them as he hadn't seen them for a while. He was a bit emotional after they left and when I asked why he said it made him think about grandchildren and how he probably wouldn't meet his own and I told him that no one really has that guarantee, especially with Chloe as we didn't have her until our late 30's and that he should concentrate on the things he has, not the things he doesn't. It's tough though...not to dwell sometimes.

Yesterday the physio came for Chris's monthly check up. She agreed with his MND nurse that a seat/ walker would be a good idea for indoors. Chris lost his balance while stroking our dog last night and ended up on his bum ! We had a giggle about it, but I fear he is going to hurt himself one day. The walker will help him keep his balance.

Today Chris had an appointment with the speech therapist to check his swallow, so we collected the seat/walker at the same time. The team also came down from The Dame Hannah Rogers Trust in Devon to demonstrate and assess Chris for speech technology. They showed Chris how to use the Tobi i to communicate, go on line, text etc and how it is all converted to speech. It can be controled with his fingers, with a metal dot above his nose and a camera or with his eyes alone, eye gaze. Chris still isn't very computer literate, but he picked things up fairly quickly. The eye gaze takes practice, they had some simple games for him to play on and after calibrating his eyes to the tablet he was away. Writing text will take a little more time. You can get a 12" tablet or a much larger tablet type of PC. The team will come and see him again after Christmas to set him up with a Tobi i which he can use with his hands for now. It will even be able to work his Sky remote, which he is finding more difficult to use now. They will upgrade to the eye gaze as and when he needs it. 
As Chris has a MS Surface tablet already, they said he can download a free 60 day trial of the Sensory software in order to practice using the actual screen, icons etc, so that when he gets to use the Tobi i properly, the software will be familiar to him. The technology available is amazing and sadly not everywhere in the country have access to it yet. We are grateful to be in the area that NHS England chose to pilot this technology first.

The MNDA are campaigning with the run up to the general election next May, for those with MND not to die without a voice. Thankfully when Chris does eventually lose his voice he will be able to communicate still with the aid of modern technology.

So inspite, of the tears this disease inevitably brings, there is the gratitude too for the help that is available in this modern world. It must have been very lonely and isolating to have had MND years ago.

Friday, 21 November 2014

No 126. No cease fire.

What a strange thing the body is, when it decides to rage war on itself, with no known provocation and no chance of a cease fire.

We take it for granted that we can walk, move, use our hands, swallow, talk and breathe, but everyone of these things depends on our muscles working efficiently.

Chris was noticing the wasting in his leg muscles and he showed me his calves. At first glance they don't look out of the ordinary, but there is no tension in the muscle, just flab. If I flex my foot then my calf muscles become tight, Chris can't really flex his feet anymore anyway and no matter what he does, there is no tightness in the muscle. It is amazing really that he can still walk, though that is getting more difficult. He is finding it harder to get up off the sofa and maybe that is why.

There are many diseases that attack the body, but with many others there is always a chance that it can be beaten, not with MND, the progression is relentless and for now it will win the war and it will take no prisoners. 

There are many clever people around the world who have being trying for years to find a weapon to fight back, to halt this disease in it's tracks, but it is hard to find a cure when you don't know the cause. They are beginning to think it is a genetic thing and have discovered there is some mathematical equation where it takes six things to trigger MND. The only problem is no one knows what those six things are.

This is why research is so important and that can only be done with money. At the moment it is like having a sword fight with a feather, you wouldn't stand a chance against cold steel, but hopefully that feather will one day turn to metal and then everyone with MND will be able to fight back.

Wednesday, 19 November 2014

No. 125. One day at a time.

On Monday Chris had a dental check up. We thought it would be the last time he would go to our dentist as they are up a flight of stairs with no disabled access. We had to go private when we first married in order to get the children in under the NHS, getting an NHS dentist in Cornwall is a nightmare, anyway, the hygienist said that they have a domicillary service and can come home to check his teeth and if he ever needed treatment then they would get him into a surgery with disabled access, so that was good. It was way too much for Chris walking the short distance and then having to climb the stairs.

The palliative care nurse came to see Chris yesterday and she is very good at getting Chris to open up. He is fedup, angry and scared, which is perfectly understandable. He doesn't want to think about the future and what it holds for him and that's fine if that is how he copes, God knows dealing with things day by day is bad enough, he doesn't need to look forward farther than tomorrow if he doesn't need to. I don't know how anyone coping with this disease deals with it really, it is bad enough watching it happen, let alone living with it.

I hate this disease and what it has done to us, but we are doing our best to deal with it one day at a time. We have booked a trip to the theatre in January to see 'Saturday Night Fever', the Hall for Cornwall has good disabled access so we have something good to look forward to in the new year. Planning to make good memories, that's what we will concentrate on while we can.

Sunday, 16 November 2014

No.124. Celebrate the special days.....

My blogs aren`t so often now, two reasons for that, firstly, it means thankfully there have been no drastic changes and secondly, it was all becoming a bit too intense and I just need to step back sometimes.

There are slow changes in the usual things, like Chris`s voice and his balance, but thankfully no other major changes for now.

Since Chris was first diagnosed with MND I have gotten to know quite a few people in and out of the virtual world who have been touched by this evil disease in one way or another. Some have been battling with it for quite a while, others were taken by it very quickly. In this past 6 months I have heard of a few people who have passed away during that time and it brings home the reality that this disease really doesn`t have a cure and is always fatal. Five people will die of it everyday, this ticking, malevolent time bomb of a disease steals the body of it`s motor neurones by stealth, like a parasite, sucking the life from everyone it touches. Without muscles, especially those that help us to breathe, we will die. Yet in spite of all this, in the majority of people, their minds are untouched and there lies the cruelest twist of all, to be aware of every step of this evil disease.

There is one particular family who are fighting this disease at the moment. Eric is in the later stages of MND, he and Davina, his wife, have three young daughters. He can no longer talk without the aid of technology, he needs constant care and he sleeps a lot because the medication to help him breathe makes him drowsy, but that bright, brave mind, still glows and fights and his strength and Davina`s are a true inspiration. Their story would touch anyone, but it particularly touches me because I see our future and while my heart breaks for them it also breaks for us. Our life is tame and calm in comparison for now, but looking into the future that others live or have lived, is very scary. Even now Davina is still able to offer love and support to others, myself being one, and I am very humbled by such kindness and strength when facing losing the love of her life.

Chris won`t talk about how he is feeling very often, he is still able to do some of the things he would like and he still laughs and enjoys life in spite of MND. He told me though that the reason he won`t talk is because he knows he will cry, so underneath that brave front is the fear, anger and feeling of unfairness that everyone who is going through this feels.

Davina told me that we must make the good memories now while we still can. She and her daughters  are hoping for one more last, special Christmas with Eric and we are going to do the same. I am going a little mad with decoration planning etc in order to make this one really special Christmas for us as family. I hope Chris will have a few more Christmases left in him yet, but the future Christmases will always be different for Chris as his health inevitably deteriorates. Someone else told me to celebrate every special occasion as if it will be the last, even though hopefully it won`t be and that is what we will most definitely do.

Take each special day and celebrate it as if it were your last, because with MND...it may be.



(Davina gave me permission to include her and Eric in my blog.)

Thursday, 13 November 2014

No. 123. Thankful for the support.

Chris's MND nurse telephoned him for a phone consultation yesterday. As he is more unstable now when walking, she is going to contact the OT and get them to drop off one of those walking trolleys for him for in the house. He has had one or two falls and he actually fell in the hall yesterday evening so maybe that will be a good idea. Luckily he was only carrying a glass of water and not a hot drink as it went all over him. He did have a good laugh about it though

I also emailed her a copy of the letter from our MP and PALS at Peninsula Health trust, saying that after investigation, Cornwall Wheel Chairs will provide an EPIOC wheelchair if required. She is going to do some more digging on that too. It is good to know Tracy is there to help with these things.

Chris hasn't been getting out as much as the weather has been so miserable , but he made the most of it yesterday when we had some dry weather. I'm not sure he will venture far today as it is awful here today again.

We are both very grateful for the support team Chris has. We certainly can't complain, they have all been brilliant. It has made living with this disease for both of us a lot easier than it would have been and especially for Chris of course.

Tuesday, 11 November 2014

No.122. Fighting is a requisite.

The MND association visitor came to see Chris for the first time today. She was a lovely lady and told us she had been involved with the MNDA from way back when she was a physio. We were both shocked when she told us that she was 82, we never would have believed it, she seemed years younger. It's amazing that she still spares time to be an AV, what a special lady. It is good to know there is someone else who can fight our corner if needed.

Chris was also meant to see the speech therapist today, but it was cancelled as she is sick. We have been experimenting a bit with some more different foods that Chris might be able to eat. He loves his cake, but it was causing way too many choking episodes. I thought I'd buy some malt loaf and Jamaica ginger cake as they are both moist, sticky cakes and so far Chris hasn't choked on them which is brilliant. I also made him some Russian cream which is a Cornish, custard type of pudding. I've never actually made it before, but Chris's sister gave me the recipe and Chris is really enjoying that too along with some jelly. It's all a game of trial and error for now though the neurologist did tell him that he will be totally reliant on the PEG to feed him one day, but not yet, for now he can still eat some things.

Another few days living with MND has gone by and mostly we just live each day as it comes. We both miss Chloe and she is a little home sick, but in a month she will be home for her Christmas break. This term was the worst last year, I think the dark evenings and miserable weather don't help. At least in this modern world there are plenty of ways to communicate. I know Chris misses her loads.

For any of us our children are our reason for living. For anyone with a terminal illness like MND this is especially so. I know Chris will fight with every last cell in his body to be around for as long as he can. MND is ultimately in control, but we are both great believers in inner strength and that it will help to put up a good defence and stall things for a while if we fight, just the same as giving up can bring things on faster. Giving up is just not an option. Fighting is a requisite.

Saturday, 8 November 2014

No.121. Eating is a need.

Life goes on in this MND world. Friday was a visit to the neurologist which was just a catch up really and checking that Chris is getting all the help he needs. The speech therapist also phoned to make an appointment for next week.

Chris has also been having more choking attacks. It mainly happens when he tries to eat something he shouldn't, but who can blame him, this man who used to have such a large appetite and love his food so much. It took ages this lunch time to properly clear his airways, I always fear I am going to hurt him with so much back slapping. Tam was there too at the time and she cried, partly because it frightened her and partly because she said it was so unfair that Dad couldn't eat like the rest of us anymore. It really took it out of Chris too for a while, I think it scares him too. He is losing his appetite slowly, partly I suppose because his diet is more limited now and partly because eating can sometimes be scary. The problem is when he does have no appetite it really depresses him. Eating is such a primal thing and a source of pleasure for all of us and it is also an important part of human interaction too, something we all take so much for granted. Eating truly is a need in more ways than one.

I am glad Chris had the PEG fitted when he did and that he managed to get his weight up to a more normal level. He was always bordering on being underweight prior to MND and this extra 7lbs he has gained has given him a little buffer. The funny thing is it has only gone on around his tummy, the rest of him is still skinny, and the muscle wasting is starting to show on his arms and legs. He has grooves appearing along the muscles. It is most obvious in his hands, the wasting between his thumb and finger on both hands is very noticeable.

His balance is slowly getting worse too. I always thought it would happen that he wouldn't be able to walk as his legs would be too weak and I expect that will happen one day, but I never thought that he might not be able to walk because he can't hold himself upright any more. Imagine when you were a kid and you used to spin around to make yourself dizzy and you couldn't stay upright, well it is a little like that for him now. Once he gets going he can stay upright as long as he can hold onto something or has his walking stick.

Chris doesn't give up though, I know he will keep going for as long as he can. We all just get on with it, what else can we do? This is how it is now, so when he can't get up from a chair without wobbling, we laugh as I grab him and when he can't get his words out, we laugh about that too as I try to second guess him. That might sound weird, but we'd both rather laugh at this disease than cry because of it, for now anyway.

Thursday, 6 November 2014

No.120. Back to reality again.

Well here we are back home to reality, it really was lovely to escape for a couple of days, but we knew it couldn't last forever.

Along with the drive home came the rain, the driving mizzle so typical of Cornwall, at least it stayed dry while we were away. The house seems so cold too, even with the Aga and the log burner going in the lounge, I think we really were spoilt in that hotel.

I've set up Chris's PEG feed ready for when he comes up to bed. His appetite has been all over the place while we were away and he really didn't want to eat the light tea I made him when we got home. It really depresses him when he doesn't enjoy his food. Hopefully it was just the change of routine. 

We are also back into appointment mode tomorrow, Chris is seeing the neurologist up at Treliske and next week he will meet his MND AV (visitor) for the first time and also meet up with the speech therapist again. He will also have a phone appointment with his MND nurse who is based in Plymouth. I guess it is good in a way that all the appointments come at once, because at least then Chris does get a breather from them for a week or two.

A little break does recharge the soul ready to fight on. I don't think proper holidays suit Chris, but a couple of days away is just about right, hopefully we will be able to do it again before the MND makes it too difficult. We are so lucky to live in Cornwall because we don't have to travel far so find some kind of escape.


Wednesday, 5 November 2014

No.119. Escape.

Well these couple of days have been nice. Staying at a beautiful four star hotel by the sea just has to good for the soul. Chris didn't want to use his enteral pump feed while away, so we left that at home. He managed to eat the lovely meal we had last night and there have been some suitable choices to make during the day as well. He felt a little unwell this morning, so we cancelled the evening meal and had a late afternoon tea instead in the Terrace bar. We sat at a table overlooking the sea which was really nice. I think the rich food was a shock to the system even though it was delicious. The staff have all been lovely, we can certainly recommend The Headland for a special treat.

We managed to get out for a walk around in the morning as the weather was pleasant if a bit breezy and chilly. We didn't venture far as most of the paths off from the hotel were way too steep for a wheelchair and were a little rough, well they were coastal paths, so we spent a lot of time chilling in our room. We certainly know how to live it up as we watched the very first episode of Thunderbirds on YouTube while lying on the bed, that made Chris's day I think, oh the simple things. 

We could see a lot of brave souls surfing off Fistral beach through the window of our room, it looked pretty darn cold from where we were, rather them than me. They looked like seals bobbing around in the surf from here.

We then had a lovely surprise as some flowers were delivered from Chris's sister and brother-in-law, narcissi, tulips and irises, all Cornish flowers, they smelt beautiful. We just spent the evening chilling , watching fireworks out of the window and watching TV, it was lovely.

It was nice to escape for a couple of days and taste a little bit of luxury, we have a lovely family and are so thankful for that.

MND might have still been looking over our shoulder, but we kept giving it a darn good poke with our elbows while we were here. More memories to add to the bank.

Sunday, 2 November 2014

No. 118. It cannot be ignored.

My head has still been in a strange place hence fewer blogs. I want MND to go away and leave my husband alone, so maybe if I ignore it, it will.......... if only.

Progression is a funny thing, it is very inconsistent. It is different with everyone I know. With Chris he started with the limp, but that seems to have stayed at the same level and other things have taken over. He says his hands are getting weaker and his swallow and voice are still deteriorating as is his balance.

What a strange disease this is, random in it's choice of victim and random in which parts it will affect first. 

When Chris was first diagnosed we were on edge, waiting for something different to happen, would he be able to walk at all by Christmas? We still won't know the answer to that one till Christmas comes. It will be a different Christmas for sure if only from the change in Chris's diet and the foods he now can and cannot eat. 

It will be a Christmas though where he will be spending the day with his family for once, how that irony sticks in my throat. I'd gladly swap this Christmas for all the past ones though, no matter how much I complained at the time. I'd gladly swap the huge meals he used to have, Christmas or otherwise, for the meals he will have to have this year or having to watch him choke on more and more foods. I'd gladly spend Christmas Eve without him as I always have before because of the farm, how I would get cross with him. I would always feel last on his list, but I would rather that than him have to spend this Christmas Eve night attached to a feed pump. 

They say to be careful what you wish for, this was what I wanted, to have a husband who worked 'normal' hours let alone part time, to be able to spend lots of time together, to actually go to bed at the same time, all those things I wished for, but not this way, not ever. I'd gladly go back to before without a second thought it if meant Chris could be well again. This isn't fair, not on him, not on any of us.

Chris is not the only one to have his life changed forever by this dreadful disease and he certainly won't be the last. What MND has done to him will not get better, there is no cure, no real hope in the here and now. We could fill our life with anticipation and dread waiting for the next sign of deterioration, but we try not too. We are not super heroes nor are we brave, we are just coping the best way we can the same as everyone else in this position. We can't totally ignore this disease because it infiltrates every part of your life, it changes things for ever so we have to adapt in order to survive, but that doesn't mean we have to like it.

So I can try to ignore MND, but it's like that person on the coach that keeps kicking your seat, you can only ignore it for so long before you explode and you have to face it head on.

Wishing, ignoring, it changes nothing, we just have to accept it and get on with life. We can still laugh and have fun though and we are going to make sure this Christmas will be a wonderful one, in spite of everything and especially in spite of MND.