No.105. 'I Love Life!'

Yesterday we got back to the reality of MND in our lives again.

Our main cooking source is an Aga, ours is a very old oil conversion and Chris always used to service it, but as it involves a lot of lifting he can no longer do it anymore so we had to get someone in to do it instead. Chris said he didn't really mind watching someone else do it, but I'm not so sure he enjoyed signing the cheque to pay for it!

The enteral feeding nurse popped back after lunch to refresh the training and helped me to set up Chris's first night feed ready for the night. I think the hardest thing for Chris will be sleeping in a semi upright position. I got him one of those wedge shaped pillows to help. The night feed went fine, Chris said he was a little restless sleeping semi upright and the pump alarm does prove to be a very useful alarm clock!!, but that's another first over with. I asked him if he was hungry now and he said yes, now there's a surprise, I'm glad he still has his appetite.

Chris has been choking a little more on his drinks, I think we will have to keep an eye on that one.

I hate how we have gotten used to all of this. MND is our normality now and we really wish it weren't so. I think it is important that we do adapt though, I think human nature makes us, else we would be wallowing in self pity every second of everyday. I think Chris is fortunate that his MND isn't tearing along at breakneck speed, well it doesn't seem to be for now anyway. We have to be thankful for any kind of blessing on that front. It is our 20th wedding anniversary next week and I have told Chris I will be very cross with him if he doesn't make it to our 25th. Joking apart, there are one or two miles stones we would love him to make, that of course would be one, but the main ones would be to reach Chloe's 21st in two years and her graduation from BIMM, we really hope those ones will be achievable. Chris has many reasons to fight to stay alive, we all need something to fight for outside of ourselves. 

MND is nature's most callous thief, it steals so much in the cruelest of ways. You will steal Chris's future MND, you will steal away his physical abilities, but you will not steal Chris's spirit and you most certainly won't steal his fight!!!

In Chris's words."I LOVE LIFE !"

No. 104. Life let us be.

Sometimes I don't want to write a blog, sometimes there is nothing new to write about, sometimes I just don't feel like it. Sometimes It's a bit of both. Sometimes I'm just tired.

There's a lull between appointments, it gives us time to breathe and just be 'normal'. A time when MND isn't rubbed in our faces, a time when normal family crisies are a welcome distraction, a time just to live.

Sometimes life just lets us be, so we can laugh and smile and forget this nightmare for just a little while.

For that we are glad.

No.103. Not dead yet.

We patiently waited yesterday for the radio interview. Chris was quite emotional, not because he has MND, but because he said he had such a wonderful family, to be doing all they have. I told him that everyone loved him, he is not hard to love. The interview actually sounded OK and the only thing I think Duncan edited out, was where Chris got a little tearful near the end of the interview. Hopefully it will encourage one or two more people to come. If you are reading this Duncan, thank you for coming to interview us and for offering to host the fashion show, it means more than you will ever realise to Chris.

I also set up a Just Giving page for Chris where any money raised for the MND association because of him, could be donated. It's https://www.justgiving.com/TeamRobertsMND/ and I also set up a text link to donate, which is to text CROB58 £3 to 70070, so if anyone donates, thanks.

We had some family visit yesterday, Chris's dad gets quite emotional when he sees Chris. He told Chris that he didn't know how Chris coped with having MND. The way we see it is we have two options. We could all go into a deep depression, sit it a corner and give up, believe me that would be quite easy to do if we thought too hard about this or we just take it one day at a time. The human body is an amazing thing in how it adapts to certain things too. If Chris were to wallow too much in self pity then he would be wasting whatever time we have left. Each day has to be lived not mourned. We laugh at this disease when we can, we actually laugh a lot anyway, we always have, it is the natural panacea for any kind of pain. We have our moments of course we do, we cry, we dust ourselves down and we move on. Chris doesn't want to die, he has a lot to live for and he is not going anywhere without one hell of a fight. He's not dead yet and hopefully won't be for a very long time.

The body might fail, but the spirit fights on.

No.102. What true courage really is.

Duncan Warren visited yesterday and he and Chris had a good catch up about their Barn Club days as Duncan used to be the DJ there. Ursula, Chris's cousin, who is organising the fashion show also came and all three of us contributed a little to the interview. It will be broadcast on BBC Radio Cornwall around 11.30am.

It is weird how this disease affects everyone in a different way, but it is usually when the chest muscles are affected that life expectancy really takes a dip. That is why we are so relieved that Chris's are still OK. I think I read somewhere that involuntary muscles are the last to be affected, but I'm not sure how true that is. The rest of Chris's body has been affected all over, with the fastest progress being with his voice and hands. We always forget that the tongue is a muscle too. I quite often have to ask him to repeat what he is saying now, sometimes his speech will be fairly clear other times much worse. It doesn't seem to frustrate him...not yet anyway.

It really did him good to see Duncan yesterday, remembering good times. Chris and I even first met each other at the Barn Club, though we didn't get together till 15 years later. He got a little melancholy after, but that didn't last, especially when he went out on his beloved farm for a couple of hours.

Chris is so brave, he never complains, though I know his heart is breaking over the future he will miss and he did admit once about worrying about me when he is gone. Mostly though we try to live each day as it comes, but it is hard not to get scared when the reality of MND is in your face every single day.

I think all those who have this awful disease, show us all what true courage really is. It is bad enough watching someone you love go through this let alone to have this hateful disease itself.

Hopefully we will raise a little more MND awareness with this radio interview and it will get a few more bums on seats at the fashion show. Every penny raised is one more step nearer finding a cure one day.

No.101. Don't spoil tomorrow.

Yesterday was a topsy turvy kind of day. The enteral pump nurse and the MND visitor rang to rearrange appointments, which at least gave us a couple of days breather this week. The enteral pump equipment eventually arrived after the driver got lost, it was hard trying to give to directions to someone who obviously didn't know the area.

Duncan Warren, from BBC Radio Cornwall phoned as he wants to come and interview Chris for his radio show and to promote the fashion show as he is hosting it. Chris is looking forward to that and to meeting him again after many years. It'll hopefully raise some MND awareness too.

Chloe texted her dad in the evening. She was feeling home sick, but I think she just needed to talk to her dad more than anything, it is hard for her dealing with all of this when she is so far away. I think talking to Chris helped them both.

It was also sad today to hear of another MND Warrior whose health is failing. It makes me so cross and upset that anyone has to go through what this awful disease does to the body. It seems to pick on the nice people who also turn out to be some of the bravest. It truly is a cruel disease.

We don't even try to think that far ahead to when those days will be a reality for us, we try and concentrate on the here and now. I like to plan ahead for practical things, but I can do that with detachment. We try to keep the scary, future stuff locked away. No point spoiling today with thoughts of future tomorrow's.

One tomorrow I do want though is the one where they find a cure, we need one so badly.

No.102. No progress is good.

Chris and I had a malt whisky last night, we were celebrating. He had a respiratory check up yesterday and his results were the same as last time, as far as his chest muscles are concerned, things have not progressed. It made up for the hanging around for ages. It was a small thing, but worth celebrating we thought. That's the one part of his body that we would like to hold off deteriorating the most.... not being able to breathe, well that seems really scary.

The speech therapist phoned to check up on Chris and she is going to wait for a couple weeks to make an appointment. Phew, that's a relief, no more appointments for a bit please. The pump is supposed to be arriving today, the nurse who does the training will be coming back to do a refresher with us on Friday before Chris starts the feeds at night.

We did have a giggle last night though, at the end of the day Chris's speech gets really slurry, (even without a malt) and the pitch is raised quite a bit too. I kept trying to think who he reminded me of and then it came to me. He sounded like 'Grandad' off of 'Only fools and horses'! We both found that quite funny.  You have to laugh at this damn disease sometimes.

No. 101. More appointments.

I've never had so many views on my blog as I did yesterday which was partly due to the MND association sharing it on Facebook and Twitter, so I am very grateful for that. Thanks to everyone who has read it.

Yesterday I was well and truly in 'plonker' mode, which happens quite often I might add. The PEG nurse popped in to see Chris around 3pm, which was fine because his GP appointment wasn't until 4.20pm. When we got to the Health Centre they told me that Chris's appointment was at 14.20pm not 4.20pm, so we were two hours late! My fault of course. Luckily his GP was still there and she agreed to see him then which was lucky. We had to pick up Chris's prescriptions too, which included loads of Resource milk shakes. I usually take a couple of bags to carry them. We were told that the PEG feed would be delivered to our home, but they had dropped them at the surgery, so I had two boxes of those to take too. On the way to the car, one of the bags ripped apart and milk shakes went rolling around the car park. Chris's GP had just come out and she came over to help. I felt such an idiot, but, It was very nice of her to help. One of the receptionists helped to carry out the feed boxes.

It has been Chris's job for years to be the auctioneer at the Church harvest auction. Someone else had to take that on now, but Chris still wanted to go, so I went down with him. They laid on a lovely spread, but Chris ate very little. It's quite obvious now that he is eating far less than he ever used to. I think these night PEG feeds have arrived at right time. Chris used to have one almighty appetite for a skinny bloke, not anymore, thanks for taking that pleasure away from him MND.

We had fun anyway though and I managed to stop Chris bidding for a marrow (a long running joke in our family). I managed to successfully bid for a nice hamper of fruit which was much more up my street. Chris said he didn't mind too much not being the auctioneer anymore and I believed him. He seemed to enjoy himself too.

Today Chris has to see the Respiratory consultant at Treliske. He isn't looking forward to that as the nurse had trouble getting the needle in the artery in his wrist last time and it was quite painful for him. Hopefully the results will be good. They are to check the O2 and CO2 levels in his blood. Breathing problems develop eventually because the muscles around the chest become weaker and the lungs aren't able to get rid of the CO2 properly. Chris doesn't seem to be having any problems there at the moment thankfully.

Yet another day in this MND world of horror.