No.152. The Ice Bucket Challenge Event.

What an incredible evening we had at the MND event at the BMA in London yesterday to celebrate the Ice Bucket Challenge of 2014 and the staggering amount of money that was raised, over £7,000,000!!! To have been invited was such an honour and we were so glad we made the effort to attend. We were both pretty nervous, not so much about meeting a member of the Royal family who was attending, but meeting all the wonderful people that we have gotten to know via social media over the past nine months.

We met up with Richard Dawson and his wife Teri and Sarah Milner, at the Premier Inn for a coffee before we went to the event. We had walked the route earlier in the day to the BMA and it was only seven minutes by foot from the hotel. Immediately when we arrived we recognised faces. I saw Ian Pratt and his wife Catherine, Paula and Robert Maguire the couple who set up the Just Giving page and got the Ice Bucket Challenge rolling over here, Tony Bray, Sarah Lanni, Jennifer Malony, Greg Broadhurst, Suzanne Maguire and David Setters. We all greeted each other like we were a long lost family, all of us brought together under the worst of circumstances, but all the stronger for knowing each other.

The wonderful MNDA team introduced themselves too, there were far too many names for me to remember, but one was Andrew who sent us our invite and also Esther who helps with all the fundraising events. everyone was so lovely and kind. What a lovely bunch of people they are.

I was rather more embarrassed to realise that so many people read my blog. Of course I know people read it, I see the viewing numbers going up everyday, but when I actually meet someone in person who has read it, well I feel really exposed. It is wonderful to get such positive feedback though and I was very touched at all the kind words about it.

We were rather shocked when we were asked if we would do a short TV interview. They were doing a slot for each ITV regional news channel which will be aired across the country on Friday evening I believe. It is not something I relished at all and I am glad we didn't have too long to think about it. I didn't mind the radio interviews we have done in the past because no one can actually see us then. I am not sure I am going to actually be able to watch it, but hopefully it will do a little more to raise MND awareness and that is what is important.

While we were waiting to go into the main room, we were being offered canapés and wine. They kindly brought Christopher enough cream cheese sandwiches to feed four people! He did manage one I think and left the rest for others to share. We also saw Jon Lee from S Club 7 there. I believe he may have been there as a relative of someone who had MND, but I'm not entirely sure. 

A lovely lady came and talked to us for quite a while, it wasn't until she left us that I realised she was Lucy Hawking, Stephen Hawking's daughter, we felt very honoured to have spoken to her.

We were then split into small groups to meet HRH The Princess Royal and each group was assigned someone from the MNDA. The singer Michael Ball was Master of Ceremonies. HRH The Princess Royal (Princess Anne), slowly made her way around the room talking to each group. Chris was determined to stand momentarily when she reached us. We had a lovely, brief chat with her and Chris even managed to get in some horsey talk. She was very nice and I think Chris now has a little crush on her. A photographer was taking photos of everyone and I believe we will get a link to view them soon. Meanwhile videos and photos of Ice Bucket Challenges were on a loop on big screens. We spotted our video and a photo of Karl being 'Iced' with our tractor loader bucket. We very chuffed to see ours included.

There was then a presentation to reveal what the amazing amount of money that was raised was going to be spent on and the affect that it has had on the MND community. A vast sum will be going into genetic research and stem cell research. One lady from the research team spoke to us earlier and we especially thanked her, as they are the people that truly give us hope. Funds will be invested in educating health care professionals too so that the needs for those with MND will be better understood. There will also be money invested in more campaigning in order to keep the funds rolling in. There was so much to take in, I have probably forgotten something, certainly many names for sure, but the money raised will certainly go a long way to make a difference, so don't let anyone tell you that the Ice Bucket Challenges were a waste of time.

HRH The Princess Royal then gave a speech and it was plain to see that she has been a supporter of the MNDA for a very long time and was very knowledgeable about MND. Michael Ball also spoke about how he became involved with the charity after doing the Ice Bucket Challenge himself last summer.

A very talented young opera singer then entertained us with a few beautiful songs.

The most amazing part of this evening though for me personally, was meeting our MND family. What a wonderful bunch of people brought together by the worst of circumstances. We would never have met any of them if MND hadn't entered our lives, but being able to talk, share experiences and more importantly getting advice from them, well that has been priceless and we can't thank them all enough.

The memories from last night will certainly stay with us for the rest of our lives. They will also be taking up a large part of our good memory bank. Chris was so much happier after the low mood he had been in yesterday because of his eating problems. In fact I do be believe he has a little crush on HRH now. He has always said he didn't have a bucket list, that he had done everything he had ever wanted to do, but meeting Princess Anne certainly made his day for sure.

The initial euphoria of last summer may have faded, but I believe we are all fired up again after this wonderful evening and knowing that something positive will come from it all.

So to everyone who took part in an Ice Bucket Challenge or made a donation, thank you from the bottom of our hearts. We may not be any nearer a cure at the moment, but you have given us hope in abundance and that is worth more to those of us affected by MND than you could ever imagine.

No.151. The tale of the train, taxi and reality checks.

The train journey.

This first tale is just to help those who may find themselves in a similar position.

A few weeks ago Chris and I were invited up to a special event in London (more about that tomorrow). After the initial thought of 'No way! Travel to London?', we changed our minds. We were humbled to have been invited and thought that this could be a once in a life time chance for us so decided to go. We thought about how we were going to get there. I did not fancy the idea of driving all that way into London, so that was out. The train is pretty expensive, but only a five hour trip. The coach was cheaper, but took six hours. Andrew, who was coordinating the event, found out about the trains for us and so we decided to go by train and booked the tickets. I haven't been on a train since my teens, let alone with someone who was disabled so was totally ignorant of the process. I booked them through Trainline.com. I told the man on the phone that we needed a disabled seat. He booked us two seats I paid the bill and waited for the tickets to arrive. While we were waiting for them to turn up I was worrying how I was going to get Christopher and a suitcase on the train. Someone told me that you can book up assistance. When the tickets arrived they didn't mention anything about a disabled seat so I telephoned Trainline again. They were no help whatsoever ever, but they did give me the number for Travel assist.

The man on the phone from there was very helpful. He told me we couldn't book a disabled seat, but that there were two in standard class and one in first class. I told him our seat reservation numbers and he said they weren't the disabled seats, but he had put the disabled seat numbers on our assistance booking form with the option of going into first class if necessary. OK, I thought, that seemed more promising. Well we were taken to Redruth train station safely on the day by a family member who runs a taxi business. The travel assist worked well and they got us on the train. They told us where to sit and parked up Chris's wheelchair. There was a reserved ticket on the seat which I knew wasn't ours and I asked one of the train guards about it, but his response was to take it off. I still felt uneasy about it though. Meanwhile a lady with a child in a push chair sat in the secondary disabled spot on the other side of the carriage. At Exeter another man in a wheelchair borded the train. His tickets did indeed have the seats we were in on them. A while before Chris had gotten uncomfortable in the wheelchair, so at Plymouth he got out of his wheelchair and sat in the seat beside me. When this man made it obvious it was his place I managed to move Chris's wheelchair over next to the lady's pushchair and this man could then wheel himself into his rightful place. He told me, as he was an avid traveller, that it was the disabled seat opposite that couldn't be booked and I expect that was where we should have sat. Well that was a learning curve, but it all ended OK thank goodness. The moral of this tale is to book your ticket through Travel assist, not Trainline and make sure that you have the seat booked in carriage C. I'm not sure we will be travelling on the train again anytime soon, but I will certainly know next time. I am certainly a little nervous about our journey home that is for sure.

The taxi journey.

Well we survived the actual journey. We were met at Paddington by a man with small UTV and he loaded us up, our suitcase and Chris's wheelchair. We spent ten minutes or more being whizzed around the station in the freezing cold while this man was looking for another passenger who needed a lift, but we never found them. He took us to the taxi rank, Chris was quickly wheeled into a taxi and off we went. The wheelchair wasn't clamped in so everytime the taxi went round a corner, the wheelchair tipped backwards!! that was a little scary. There were Chris and I trying to keep it in an upright position! We were dropped off at the Premier Inn and I managed to push Chris and pull the wheelchair the short distance inside. The disabled room was on the first floor and was perfectly OK. Sigh of relief' we had arrived.

Reality check.

We went down to the restaurant later to have something to eat.

Now we knew this could be problematic, but they had a fish pie on the menu which we thought Chris might be OK to eat. He did try one of the green beans that came with it, but couldn't eat them, the granary bread or peas that accompanied it. He managed to eat a fair amount of the fish pie, but it took him ages. I did suggest asking if they could puree something, but I think Chris felt embarrassed about eating pureed food in a restaurant. Now Chris doesn't say much, but I could tell by his face he was uncomfortable. He had also fancied a cider, but he was close to choking a couple of times on that and with the fish pie and I could see the anxiety was rising in him. He tried a hot chocolate later too and he did nearly choke on that. I could see he was scared of making a fool of himself in case he choked and he was also sad too because here in the restaurant, he could see everyone eating huge meals and it made him really miserable. 'Remember what I used to put away' he said and I had to stop myself from crying for him. I bloody hate this disease, it is so damn cruel, enjoying a good meal is such a simple pleasure and he can't even enjoy that now. He ended up leaving most of the cider and the hot chocolate. I just wanted to get him out of there and back to the room so that he could relax. Once there he lay down on the bed exhausted and fell asleep.

This is a bitter sweet trip. We wouldn't be up here if it weren't for MND, yet this whole process, the whole journey, eating out etc, it just hits home what this disease is doing to Chris and I hate to see him sad, because when he is sad I am sad.

I am sure tomorrow will be wonderful and special and we will be able to add them to the good memories that we have rather than the bad. I just wish the bad ones weren't piling up too.

No.150. Wheelchairs and breathing tests.

Well today was an eventful day. We left home early to get to Truro for Chris's wheelchair assessment. We thought we would hit the morning rush hour, but must have just missed it so arrived early. Thankfully they were happy to see Chris straight away. I was dreading this appointment as we had been led to believe that it would be hard to get an electric wheelchair. I had visions of me having to beg, but it wasn't like that at all. The physio there was lovely, all he wanted to do was check Chris's needs and measure him up. They are actually providing him with a MNDA recommended wheelchair which is brilliant. I was advised by a fellow MND warrior to ask for a riser seat. They said they could build the chair with one, but that we would have to pay for that attachment. We can just about manage the cost, but we are hoping the local MNDA might be able to help as they have a lot of funds that need using up else they will all go to head office. Chris tried the demo chair and he was pretty impressed. They also said it would probably be ready in four weeks. Well as you can imagine we left there pretty content. Chris would be getting some independence back at last.

We then spent a nice couple of hours with Chris's sister where we had lunch and then went back to Truro again in the afternoon for Chris's respiratory checkup at Trelsike. Yet again the nurse had trouble getting blood from the artery in Chris's wrist. This test is to check the oxygen and carbon dioxide levels in his blood. I could see it was really hurting him, but he said nothing and just bit his lip. She managed to get a small amount out on the second attempt and then it wouldn't stop bleeding! That was then followed by the 'huffy, puffy ' tests as I call them or the 'blow job' as Chris calls them, as the nurse shouts out, blow, blow, blow and suck, suck suck.!! These are to check Chris's respiratory muscles, which basically involves him puffing, blowing and sucking into various devices. He always finds that really tiring. Once that was done there was a lot of waiting around for the blood tests to come back and then waiting to see the consultant.

Firstly the consultant said the blood test results were normal which was brilliant and we were both really relieved about that. Chest problems are one of the biggest worries with MND. He said his chest muscles were weaker, but he said it is also harder to do the blowing tests properly as the facial muscles get weaker as time goes on, so those tests aren't quite so reliable. In spite of his chest muscles getting weaker he is still able to ventilate his chest well which is the main thing, so for the second time today we left an appointment happy.

Who would have thought a year ago that our lives would have changed so much because of MND, that we are excited that Chris is able to get a wheelchair. How quickly this becomes our normality. Looking back at life before MND, is a bit like watching something sink into deep water. It slowly disappears and becomes unattainable. We mourn our normal lives before MND, but strangely we just learn to get on with how it is now. We are thankful for small things and something like a normal respiratory test is a big deal, because it means more time. Chris wants to live and those chest muscles, well they really are the breath of life. 

So today in this living nightmare is one of those rare good days as far as MND is concerned and for that we are really thankful.

No.149. An IBC update and thanks.

Chris and I have been invited to a very special event this week regarding the Ice Bucket Challenge of 2014, which I will write about later in the week.We were shocked and honoured to receive this invite and to be honest wondered why we were invited at all, humbled is not the word. Anyway, before then here is a catch up on what the Ice Bucket Challenge was all about.

Last summer a phenomenon occurred, it was the Ice Bucket Challenge. It started in the US, first when Anthony Senerchia from New York, who has MND (ALS), was challenged to do the Ice Bucket Challenge by golfer Chris Kennedy. Peter Frates, a former baseball player who was diagnosed with MND (ALS) in 2012, also did the challenge and he posted it on his social media and the rest, as they say, is history. It quickly spread, especially when celebrities came on board and funds for the ALS association in the US poured in, passing the million mark many times over.

Paula and Robert Maguire here in the UK, felt the MND association here might benefit from this craze and they set up a Just Giving page with the plan of raising £500. They posted this on social media and it took off here too and ended up raising an incredible amount of money, over £4,000,000 to date, just a little more than their original £500 target and over £7,000.000 in total was raised altogether with the donations that were paid directly to the MND association itself.

How did we get involved with this? Well in a very small way by doing our part not long after Paula and Robert set the challenge. Chris had only been diagnosed a few months, but I had already gotten to know many people via social media who had or are being touched by MND in some way. I was already following Robert and Paula, especially after finding out about Paula`s immense fundraising efforts for MND after losing a family member to it a few years ago.

You feel so helpless when you first hear this diagnosis, we did a Bake it Day in June, a few weeks after, as we felt we needed to do something to help fight this awful disease. Then when Paula and Robert posted the challenge we decided to do it a couple of days later as a family and shared our videos and donated as requested. We managed to get many other family members and friends to take part too which was just brilliant. We just wanted to help Paula and Robert  reach their £500 target.

The excitement that grew from this phenomenon was palpable and contagious, the figures kept growing, the fund might hit a £1000, no, £10,000, before we knew it was hitting £1,000,000!!
What this meant to everyone who has MND or lost someone to it, well you just cannot imagine
what this felt like. It gave us hope, it meant suddenly people were finding out what MND was and  awareness was growing by the day.

There were frustrations though along the way. There was immense confusion between MND and ALS, not helped by the lack of knowledge in the media. They seemed to have no idea that ALS was MND, just by another name, in fact ALS is just one form of MND. Some people thought it was a type of cancer and started donating to cancer charities instead. Now no one was saying people shouldn`t donate to cancer charities, we have all lost someone to that dreadful disease too, but MND is a relatively rare disease, it is an underdog charity in that sense, it gets no government funding and cannot afford major advertising campaigns on the TV to help boost funds. It relies entirely on donations and fundraising and it was MND`s chance to take the spotlight and be noticed. I believe around £3,000.000 a year is the amount of fundraising that usually comes in to the MNDA, so you can imagine what it felt like for over £7,000,000 to be raised in such a short space of time.

Once the MNDA got properly on board though and interviews were done on news channels and daytime TV by people actually living with this disease and from the MNDA themselves, did the message finally start to get across.

Of course there was a certain amount of negativity from all of this, some people didn`t `get it`, felt celebrities were using it as a way to show case themselves, others were doing the challenge and posting it on social media with out donating or even mentioning MND, but that was to be expected and I personally don`t care as to the reasons why people did the challenge, but that they did it and that mostly it highlighted ALS and MND around the world and raised millions in the process.

Recently I saw a video that talked a little about MND research, it said that they needed to sequence 20,000 human genomes in order to study the genetic causes of MND. Each test costs £1000, so that is £20,000.000 needed to just do that, so really at the moment, there is never going to be enough money for research, so you can see that even the UK IBC funds are just a drop in the ocean. Thankfully, as this is a global disease though, the research is global too and so is the fight to find a cure.

Recently awareness has been raised even more with the film about Professor Stephen Hawking , `The Theory of Everything`. Winning awards is brilliant for those who took part in the film, but the awareness that has been raised is priceless.

People`s memories fade fast, even now there are many who have no idea what this awful disease is, in spite of all the recent publicity, so raising awareness is a never ending battle, because awareness hopefully equals donations and every penny donated is a step nearer to finding a cure one day.

Chris, myself and our family would like thank everyone who took part in the Ice Bucket Challenge and donated. Also anyone who has ever donated in other ways or taken part in the many fundraising events around the country and the world, with the aim of helping to find a cure for this vile disease. The war may not be won in time for those with MND like Chris, but we have to hope that future generations will be spared the pain that this awful disease brings and that there will one day be an effective treatment.

The Ice Bucket Challenge hopefully started one big ball rolling and long may it continue.

THANK YOU.

No. 148. Independence V dependence.

I have to stop myself being so over protective of Chris. I see him struggle with things sometimes and I want to help him, sometimes he lets me...reluctantly, sometimes he says he is OK. I don't want to steal his independence, but at the same time I hate to see him struggle. It is a hard balance. It is difficult enough I know, even though he doesn't say much, to not be able to get out with his cattle, to farm, to just have to settle for the office work, let alone accept what this disease is doing to him and to have to ask me for help. It is not just male pride, it is human pride. We would all be the same in his position. MND just doesn't steal the person of their physical abilities, it steals so much more of all the things that validates us as a person.

I am over protective, I am a control freak, ask my kids, but I try very hard not be. When Chris is practising his Eye gaze I now set the computer infront of him on his table and I leave him to it rather than watch over him. He is doing just fine too, getting better at it everyday.

Chris has just spent 1/2 hour getting his overalls on to go outside. He needs to get out on the farm, on his scooter, to be useful in someway, even if it is just tidying up. I try not to worry as it is so cold, what if he falls and gets chilled, what if he hurts himself? but I have to resist those thoughts. His mental well being is as an important as his physical well being, in fact more so in some ways and that means he needs to get outside, that was his life prior to MND and it was a life he loved.

We were relieved to have a phone call from the wheel chair people in Cornwall yesterday. They said they had a cancellation for next Tuesday. Chris has his respiratory check up next Tuseday afternoon and the wheelchair appointment is in the morning in Truro too, so that fits in just perfectly. Let's hope it goes well. Getting an EPIOC wheel chair (indoor/outdoor electric), will give Chris back some independence too. We will be able to get out and about a bit when the weather gets warmer, shop together, silly stuff like that.

Some rays of sunshine break through this dark cloud of MND sometimes though. As I've said before, Chris loves his whisky, especially a good malt, but after that bad choking episode he settled for having whisky in Baileys as it was thicker and was less likely to cause choking. For Christmas I had bought him a box of three miniature malts. He was thrilled to discover that sipping from one of these bottles meant he could still drink a malt whisky. The small opening on the bottle means he can only take tiny sips and that means no choking too. He was a very happy man when he found that out. At least Chris has that small pleasure back again.

It is a year since Chris was prompted to go to the doctor about his limp. A late night walk up to the village to retrieve some escaped sheep had really frightened him as that annoying limp he had, well it had suddenly made his legs become like jelly and he said he had really struggled to walk back up the drive. I made an appointment the next day. When he came home from the GP and said he was being referred to a neurologist I just knew. I already knew a little about MND. Chris had been complaining about his hands feeling weak, he had been have really bad cramps and I had noticed his speech was a  little slurry. A quick check on line confirmed my fears, though I didn't let on to Chris, not straight away anyway. I was so hoping I was wrong, let it be something else I thought, but all the tests that were lined up, well they were to rule out MND. We were grateful that Chris was diagnosed within three months, I know that is not always the case with everyone, but we were not grateful to hear that diagnosis though. How our lives have changed. We knew that day that life would never be the same, but until you have to live it you have no idea how it much that change will be, to be given a death sentence, but to not know how long, you quickly learn not think about that. It will drive you insane else and just spoil the here and now.

So MND progresses, Chris slowly loses his independence and is more dependent on me. I will do my best to be there for him every step of the way, but he is the one living this horror, fighting this battle and my heart breaks a little more for him everyday.

No.147 Not liking it.

Chris was very reluctant to have our bed moved downstairs, but I managed to persuade him that it was the best thing to prevent him having an accident on the stairs, so yesterday evening Jordan and Karl moved the bed down into the dining room for me. I managed to squeeze the table and chairs into the corner and the bed fits along with all the pump equipment and feed, so that is good. It took Chris a while to get off to sleep, I'm not sure why he is so unhappy about this, maybe it is just because MND is rubbing it's nose in his face.

The palliative care nurse came to see Chris this morning too. She is always really helpful, though she did ask Chris if he needed a hospital bed yet at home and his answer was a definite no and I agree. He said he still needs his hot water bottle, me. This damn disease isn't taking us sharing a bed away from us yet. We love our cuddles before we go to sleep.

We also had a call from the physio and she said that the wheel chair people will be in touch within the month. That seems an awfully long time to me. I guess he will then have to wait weeks for a wheelchair to be sorted. Cornwall is very hilly and it is hard for me to push Chris around in his manual wheelchair. He will get his independence back once he has an electric one. They told us though that Chris isn't eligible for the voucher scheme to put towards a wheelchair of his choice. Not sure why. We are probably going to have to start looking for a wheel chair access vehicle too. Something else Chris isn't keen about doing.

It is quite obvious now how much weaker his legs are getting. We went over to his dad's bungalow this afternoon and he could hardly lift his feet up the step to get in the door. We are going to sort out the access before we move in. 

Prior to diagnosis and for a while after, Chris used to get really bad cramps in his abdomen and the back of his thighs. They seemed to settle down for a bit, but he has started to get them again. I think he can be prescribed something for them if they get bad as they are really painful. 

Sometimes I feel we are led into a sense of false security because things seem to be going along with little change and we think 'This is OK, we know where we are and how to cope.' but then something else deteriorates and we have to face up to the fact that this disease is progressive and we don't like it... not one little bit.

No.146. I hate MND.

Well, I thought this day might be coming soon. Chris is struggling now with his balance and walking. Even standing up from the bed is tricky now and he falls back down again. I helped him get down the stairs this morning and seeing him trying to walk down well that is an accident waiting to happen. I told him we can move the bed into the dining room. Chris said no at first, he said he could go down the stairs on his bum, not a good idea. He agreed with me in the end though. There is a saying 'Pride comes before a fall', so true in this case. He is accepting that this will be the practical thing to do even if he is reluctant.

We will be moving into Chris's dad's bungalow in a few weeks. Just some practicalities to sort, but we are so very grateful to be able to do this. Meanwhile moving the bed down stairs will be the next best thing.

Slow down MND, you are moving way too fast for my liking. Leave Chris alone, leave everyone with MND alone. You are more than a disease, you are an insipid evil slowly stealing life. I rarely hate anything, but MND? well you are so very easy to hate.