No.95. Give us a break.

Today seemed quite manic for some reason. The physio came to do the routine check ups on Chris. She told us that Cornwall wheelchair services would not supply the MND recommended Epioc wheelchairs, which was something we didn`t want to hear, plus he would need to be completely off his feet before they would assess him for one, which would then involve weeks of him waiting for a less suitable wheelchair to be be delivered. How is it right that people are left with absolutely no independence like that? It is so wrong.

Chris also had another PIP letter saying he has to have an assessment on the 20th now. I was told to phone again so they could postpone it again. What a way to run a system. I emailed Chris`s MND nurse and she said to contact the MNDA as they were now employing someone specifically to deal with these problems. The person I spoke to took down Chris`s details and she said the usual wait for PIP was around 6 months and if he hadn`t heard by then they would write on his behalf. She also recommended writing to our MP too, which I did.

We then had phone calls from the palliative care nurse wanting to make an appointment and the dietician telephoned to do a phone consultation with Chris and to arrange delivery of the feed pump and feed.

The local MND visitor then phoned to make an appointment too. We then had family phone calls and the odd cold call thrown in, I felt like I had been on the phone all day.

Chris had to make a couple of business calls, which he was concerned about because he is very self conscious of his speech and I think that makes him worse.

On a good note Chris`s cousin came to visit with details and tickets for the fund raising fashion show she is arranging for the MNDA. She has worked hard, we hope it goes well.

As much as we hate taking Chloe back to Brighton, I think we`ll both be glad to get away from home again for a couple of days.

We really can`t get away from this disease, no matter how much we try. Give us a bloody break MND.

No. 94. Life goes on with MND.

Busy day today, Chris has a physio visit, the dietician will be phoning, plus I have to make sure all of Chloe's stuff, plus a wheelchair will fit in the car. We are taking her back to Brighton tomorrow as she starts her second year at BIMM doing her music degree next week. 

Not looking forward to that in many ways, we will miss Chloe like crazy, but we are excited for her too as she should be recording her first EP in November and is excited to be going back. Thank the Lord for Messenger and Skype. It will be the first time I will have to drive the whole way home, a 7-8 hour drive depending on the stops. Chloe will share the drive up. I know Chris really misses driving, but his weak feet and legs make it too dangerous for him to drive now.

I managed to book a disabled access room in the Travel Lodge so there will be room for the wheelchair and Chris will be able to shower. We do love Brighton once we get there. We are going to visit a friend of mine too on the way home which we are looking forward to.

MND affects every part of your life, there is nothing we can do now with out having to consider it and it's consequences. It won't stop us living life though, we just have to plan things differently, like I've said before, can't let MND have all it's own way.

No 93. PEG stuff again.

Dealing with Chris's PEG has become part of our normal routine now. The one thing we hadn't done was the 'plunge and rotate' as the PEG wound needed to heal for 3 weeks.

I had been trying to unclip the PEG button for a couple of days (I think that's what you call it), but it was really stiff and I was a little scared of hurting Chris, but I tried again yesterday and managed to undo it, so we did the first 'plunge and rotate.' The reason for doing this is to stop the back stopper of the PEG which is against the lining of the stomach, growing into the stomach itself. Hope that makes sense.

When the PEG button is unclipped you have to clean it well, move it up the tube, push the tube back into the stomach a teeny bit, rotate the tube and then pull it out till there is resistance and then put the clip back to where it was. We also had to change the end where the syringe attaches as the nozzle clip wouldn't attach anymore and I managed to change that as well. The DN said they don't last very long and Chris was given a few spare ones just in case.

The dietitian is supposed to be calling today to arrange delivery of the PEG pump and feed. Hopefully that will arrive next week as we are off again for 3 days on Wednesday as we have to take Chloe back to Brighton.

Chris was happier yesterday, he went out on to the farm on his scooter, that's always guaranteed to make him smile.

No.92. Losing the voice.

I'm not sure what makes me sadder, watching Chris lose the ability to walk and use his hands or hearing him lose the ability to talk.

The voice, it is something we all take for granted. It's how we express ourselves, it's how we communicate. Hearing the voice of others brings us pleasure, from recognising the voice of a loved one down the phone, hearing someone say they love you, or listening to a beautiful song, all made possible with the voice.

Then one day you get this awful disease. It will slowly cause your motor neurones to die, it might start with your legs, it might start with your swallow, eventually it will most likely affect your voice.

Chris's speech started getting slurry quite early on, it is slowly deteriorating and has always been much worse when he is tired.

We've just come back from the first holiday we've had in years. It was good to get away, but as I said in my last blog, I think it was tough for Chris having to be wheeled around, but I also noticed how quiet he was too. Even now we are at home he is still pretty quiet. I asked him if he felt his voice was deteriorating and he said that his head knows what he wants to say, but he can't always form the words. If he takes a deep breath it helps, but that takes effort. I asked him how it made him feel and he said 'out of the ordinary'. He feels very self conscious that he sounds slurry and I think that is causing him to be reluctant to speak sometimes. That and the deterioration in his hands and balance have made him feel quite miserable at the moment. 

I don't think anyone who hasn't lost their voice permanently can really understand what it must feel like. I try, but how can I? I can still rabbit on about all kinds of inane stuff, I can sing along to a song if I feel like it, I can shout and get angry if I need too, but just saying a few short sentences is an effort for Chris now.

I know he has been referred to the 'Speech recognition 'people, but I hope there won't be a gap between his speech really deteriorating and something to help him communicate being set up. They said the waiting list is long.

Why does MND have to be so cruel ? Why does it have to be so inevitable? Why did it have to choose my darling husband ?  This disease does seem to pick on the truly nice people.

No. 91. Back home

It's been wierd not writing a blog for a week. Not having any wifi or mobile access where we were staying was a shock to the system, but it was nice too in a way, not to have the distraction of it.

We had a lovely break. It wasn't too far to drive from here, about 3 hrs, the bungalow was comfortable, but maybe I should have researched the location better. We were 8 miles from the nearest shop!

We visited all the places we planned like, Longleat, Wells and Glastonbury Abbey. They were all really wheelchair friendly as was Haynes Motor museum which Chris really enjoyed, especially when he saw they had a TR8 there. He had to make do with a TR7 and do his own V8 conversion on his.

We also went to Cheddar Gorge. I knew that would be a problem, especially the caves, but Jordan, Tracey and Chloe managed to go in and see them.

It was lovely to all spend so much time together, but Chris was very quiet a lot of the time. I think the reality of having to be pushed everywhere everyday kind of hit home. It was partly his lack of independence and partly the thought of me having to push him, which I didn't mind at all, but I understood where he was coming from. I do think talking is quite an effort for him now too. We had some fun evenings though with him playing games like Monopoly and chess with Chloe, Jordan and Tracey, even I played Monopoly last night, quite the miracle, I hate playing board or card games usually.

We took an impromptu visit to Weston-Super-Mare yesterday. Ok, it was very flat and I've never seen so many people in wheelchairs or mobility scooters. At least Chris didn't feel so out of place. Not sure if I would go there again though, I would prefer Brighton anyday I think as a comparison.

We got back home late in the morning. Chloe and I shared the driving. On arriving home though Chris had a text to remind him of his PIP assessment on Monday. We were told that had been cancelled, so I had to phone them again. They have the paperwork, but it still hasn't been dealt with yet so the woman on the phone said that they have postponed the appointment for a month till the end of October. Until the claim is dealt with he will still be in a queue to be assessed apparently. I just have to keep phoning. The time taken to deal with a PIP claim is appalling really, especially as it seems to be a private company dealing with it. It has been 4 months so far and I've heard some people say it can take much, much, longer. Let's hope some people don't die before their claims get dealt with eh? Chris is supposed to be being fast tracked too.

Well I have the usual holiday washing to catch up with and Chris has felt 'normal' again by dealing with the farm post and has gone outside on his scooter. He has his independence back again. 

The break was nice, but it is good to be back home.

No.90. Holiday time.

We are off on holiday today. Apart from the odd weekend away for weddings or visiting Chloe, we haven't had a holiday for 12 years. I booked it when Chris was first diagnosed. We had no idea how he would be by this time, so I booked a disability friendly bungalow in Somerset. Chloe and Jordan and his wife Tracey are coming with us, while Tam and Karl with be 'pet' sitting for the week. Apart from driving on the M5, I am looking forward to it. We don't get much motorway practice down here in Cornwall and I always used to leave the motorway driving to Chris. Chloe will drive through Cornwall so that will help a bit.

It will be really nice to spend some time away together as a family, time to make a few memories. Jordan will be 27 while we are away, so that will be a nice family celebration too.

I want to try and keep up with my blog, as a diary for my own records if nothing else, but I'm not too sure of the wifi access, so if I don't post any for a while, that is why.

Moral of the day..Live life while you can as you never know what it is going to throw at you. 

No.89. Wishing life was `normal`.

Yesterday started with a mad rush as I had to go into Helston for my Weight Watchers class (sadly for me it has taken Chris getting MND to make me realise that I have a choice with my health).

I had to get back straight away as the enteral pump nurse was coming at 10.30am to do the feed pump training. Yet another nurse who works alone covering the whole of Cornwall. They must spend a third of their day travelling. She was lovely though and went through the whole process of setting up the pump, how it works, what to do if things go wrong etc. Chris hasn`t had an order put in yet, so she said she would come back again in October if we needed to go through it again. She also went through PEG care again and had a few extra useful tips, like massaging the tube to get rid of any feed residue.

I had rung the dietitian on Monday as the appointment to see her wasn`t until November and I thought that was a bit too far away and coincidentally she telephoned today to talk things through. She will phone back on the 30th to check in and then place the first delivery of the pump and the night feeds, which I think will be 500ml bags that will be slowly fed to Chris over night while he sleeps. He has lost a couple of pounds in weight because he is eating less, so hopefully that will stem anymore weight loss. She also said that a dietitian will visit him at home then. I`m not sure that he is very happy about sleeping at a 45 degree angle, which is necessary to stop reflux from the feed, but I`m sure he will get used to it.

So many things we have to get used to with this disease. Sometimes it`s hard to remember what `normal` was like. We would so wish life to be normal again. I would be nagging Chris for working too many hours, he would be like a pig in muck, or should I say a cow in muck, doing the job he loves. I'm sure everyone has dreamt of a day when they wouldn`t have to work, especially if they hated their job, but it means nothing if you don`t have your health and even less if you have to give up a job that you love.

MND steals your body and steals your life in all kinds of ways, it is so cruel.