No.44.The breath of life.

Yesterday was another trip to the RCH in Truro as Chris had to see the respiratory consultant. Breathing muscles can get affected as time goes on with MND, so it is important to have regular check ups. We had no idea what to expect and one of the tests was a little unpleasant. The nurse explained to Chris that they had to take blood from the artery in the wrist. This is to check the oxygen and carbon dioxide levels in his blood. Well this proved not to be an easy task and her first attempt at poking the needle in his wrist for about a minute didn`t work, or the the second attempt either. Chris never said a word, but his face spoke volumes, I think it was a little bit painful!! She then asked if he minded is she got the consultant in as he had a knack with tricky patients, to which Chris asked `Who is the more experienced!!` Luckily the consultant did have the knack, he kinked the needle slightly and yay!! out popped some blood.

The other two tests were much easier, the breathing into tubes tests and a chest Xray. The consultant then examined him. He explained that when the chest muscles don`t work properly they don`t get rid of carbon dioxide as efficiently, especially at night and this can cause a lot of problems like daytime tiredness and headaches on waking. When this happens they can use something called `Non Invasive Ventilation`, which is a mask attached to a machine that you use at night. He said Chris`s chest muscles were slightly weaker than they should be, but at the moment all the tests were normal, which is really good. He has to go back every two months for regular check ups.

I`ve read that before NIV was used, life expectancy for MND patients was a lot shorter as respiratory failure was brought on much sooner, it was a choice though and some people prefer not to use it. At the moment Chris has said he would, at the moment he wants to stay alive for as long as he can.

We then popped up to see Chris`s sister, who lives not too far from Truro and had a lovely meal with them. It also meant Chris was able to see his other sister too who is down on holiday.

Well yesterday`s low mood passed almost as soon as it came. It kind of hits like a wave out of the blue when it happens and then it`s gone. People have told me that this is normal and I guess that all I can do when it happens is to literally ride the wave .

No.43. Hitting lows

Every now and then I just feel so over whelmed with it all and so bloody guilty. I hear of so many brave people out there with MND, so many others touched by it doing amazing things to raise awareness and fundraise and it makes me feel pretty useless. I know those thoughts are stupid, but going with the flow, that`s just how I feel today.

I know there is nothing I can do to halt this disease`s progress in Chris, all I can do is just be there for him. It`s like I`m standing infront of him, trying to fight off this demon, but I also know that I don`t stand a flipping chance against it and neither does he. I want to do more to raise awareness or fundraise, but sometimes, just sometimes, I just want to hide from it all rather that be strong and fight. I don`t want to face up to it, I want to pretend this is just a bad dream and when I feel like that , doing positive stuff goes right out of the window.

I know this`ll pass, I know I`ll get the fight back and I know it`s probably normal to wallow sometimes, but seeing Chris just getting on with life and being so brave, well it makes me feel just a little selfish.

Tomorrow MND will still be there, but so will we, I`ll do my best to regroup my thoughts and fight on.

No.42. One for the memory bank.

Chris and I arrived home safely from our weekend away after first dropping Chloe off in Brighton, she will catch the coach back home, but at least she will only have to do the 12hr trip one way this time. It took us nine hours in total, including breaks and I drove from Portsmouth (Chris did the first couple of hours). I was quite chuffed with myself as I have never driven outside of Cornwall before. I was terrified of the motorways as we don`t get much chance to practice on them down our way, I used to let Chris do all the `up country` driving when he was well. Times have changed and I have had to come out of my comfort zone, but I think it did me good and Chris got to rest for a change.

I coped getting the scooter in and out of the car, the ramp works a treat and Chris soon got the hang of negotiating pedestrians in Horsham`s shopping precinct. We taxied to my brother`s place where they were holding a surprise party for his eldest daughter. It was lovely to catch up with the family as we don`t see each other very often. There was lots of laughter, especially as Chloe got a little tipsy and my brother had a good bottle of `Jack Daniels` on hand for Chris. There was also plenty of chat and a few tears and a good time was had by all. It was one of those occasions to be added to the memory bank and it was one party where MND was not invited.

No.41.Time out.

Today we are going away for a couple of days. It`ll be a long journey from the south of Cornwall, but it will be worth it when we get there. Time out from the real world for a short while. It will give us a chance to try out the new car too. The new ramp arrived yesterday, just in time and we managed to get the mobility scooter in OK. I think we can cope with that until we need to move on to a full blown WAV car.

Chris`s speech was worse yesterday than it has been. Could be tiredness? could be the heat? or it could just be progression. He spent way too long out on the farm yesterday too without eating and I was a little cross with him. I know he just wants to help his brother, but I just want to protect him. I hope we can put MND out of our minds for a couple of  days at least, the use of a mobility scooter will be a bit of an obvious reminder though, but we won`t let it spoil our fun. I`m not writing any blogs while we are away, I will write again when we get back.

No.40. All about the fundraising.

Thought I`d write todays blog about how important fund raising is and how we are desperately trying to do our bit.

Firstly MND and the MNDA gets NO GOVERNMENT FUNDING for research into finding a cure, not a single penny, so donations are the only hope those with MND have.

It is quite hard sometimes, for me anyway, to think of fundraising ideas outside of the bigger organised events that are all so far away. I do have a serious lack of imagination on that front.

The poster above shows what the money raised by donations can fund, apart from the obvious one of research. It shows how donations actually help people with MND directly. I`ve just set up a Fighting Fund for Chris called `Team Roberts fighting MND` to record any funds raised in his name. (It doesn`t go direct to him in case you were wondering), so I am desperately thinking of ideas to raise some more funds.

We raised a very unexpected £625 with out Bake it day event and I`ve been trying to think of other fund raising ideas. The village church have said we can set up an awareness stall to raise some money at their annual fete. I`ll ask if I can do a little raffle too and I have been thinking about organising a farm walk, maybe incorporating the `Walk to D`feet` events. We have done a farm walk before and it was well supported, so that may be an idea. All small scale stuff , but every little helps.

I used to paint a bit in oils too , nothing fancy, but I thought I might put a couple I have here up for auction on EBay. I`m going to research a bit more on that front, but we`ll see. Someone might like them.

I am in awe of the people who do the marathons, sky dives and swims, I could truly never do anything like that, so I`ll try and think of ideas more within my abilities. I`m pretty good at a mean cake and a cuppa, so maybe I should stick to that.

However funds are raised though, every amount, no matter how small, is so important. Lives depend on it. The MND warriors of today may not benefit from any future cure, but they benefit in other ways. The MND association can provide them with specialist equipment and other things like telephone support for those who need it.

Charities like Cancer research UK raise around £500 million pounds a year, yes, it is an important charity and yes far more people get cancer than MND, but the costs of research are probably very similar I would imagine and MND only raises around £3 million pounds a year, quite a difference, so you can see why every penny helps. The fight to find a cure is global and the fact that the fight has been going on for 75 years shows how tough finding a cause and a cure is for this disease. There are glimmers of hope on the horizon, probably too late for people like Chris, but it gives hope to future generations who may get MND.

So, fund raising is REALLY important, hence raising awareness constantly and I shall get my thinking cap on for our next fundraising idea.

No.39. Practical changes and unwanted changes.

Yesterday Chris and I decided we`d have a go, well I would anyway, at getting the mobility scooter into the Kangoo. It was important that I was able do it. It came apart easily enough, but I am only tiny, 4` 10" and the individual parts were still quite heavy to lift into the boot, so we weren`t sure that was the best option. The scooter could fit complete with the back bench seat down with room left for suitcases and maybe the wheelchair too, but we would need a ramp so after searching on line we ordered one. Hopefully that will work OK, will update you on that one. It was so much easier when boots had to fit just shopping, prams and dogs !!

It takes an awfully long time for Chris to eat a meal these days. It takes about 2hrs to eat a couple of ham rolls and two small pieces of cake. OK, a certain amount of that time is taken up with him nodding off, but the actual act of eating is slow too and quite tiring in itself. I think if he didn`t love his food so much or wasn`t  so determined, he may have given up halfway through. I guess that is another reason why people lose weight, some people must give up eating their meal because it is so tiring. He joked that when he has the peg fitted he can whip his meal in quick and then get back out to work. That`s Chris, forever having a laugh and seeing the positive.

It is quite hard for me to watch Chris get ready to go out on the farm. He has to lean against the wall to put on his overalls because he can`t balance and putting his work boots on is a slow process too. The control freak in me wants to help him, but he, quite rightly, wants to do things for himself. If he shows signs of frustration it is very subtle, I`ve yet to see him get angry over this. I`m not sure how he keeps up this positive attitude. I bought him a pair of new shoes yesterday too that have Velcro straps, now Chris is a proud man and you would have thought he had been an army man the way he keeps his good shoes so clean and shiny and I thought he would really object to these new ones, but he actually likes them, testament to how hard it is now for him to do up a pair of laces .

It is so hard watching someone you love go through this and knowing there is much worse to come doesn`t bare thinking about, it is so cruel and unfair. How can this be happening to my Chris? How the hell did this God damn awful disease ever come about? I pray that there will be a cure one day so that future generations won`t have to go through this nightmare of a disease.

No.38. Thanks to those.....

When Chris was first diagnosed it was the worst thing ever, even though we had prepared ourselves that it might be MND. You feel sick to your stomach and lost, embarking on one never ending nightmare. The one thing I soon discovered though was that Chris wasn`t alone, that there were many others out there, other MND warriors, fighting their own battles.

I also noticed quite quickly, via social media, that there were a lot of people who had been touched by MND in some way, busily spending their weekends fundraising in any way they can. There are others who constantly raise MND awareness and are there for support.

Yesterday was one example, a group of 22 brave people swam from the Isle of Wight to the mainland along with a group of kayaker`s. They did it solely to raise money for MND in the names of many who live with MND and many who have died from it, MND warriors and MND angels.

I just want to say thank you to them and all the other people who run marathons, sky dive, do 100k walks, have cake stalls and what ever else they can think of to raise money. My husband is grateful, we are grateful, they are all unsung heroes. It is people like them that give those with MND some kind of hope as there is no government funding for research into the causes or to find a cure. Without these amazing fundraisers and those that raise MND awareness, there would be no research, there would be no searching for a cure and then we would really be lost.

THANK YOU SO MUCH !