2nd entry

I am not going to make a habit of two blog entries for one day but I just have to spill the beans on Penny.  OK it is fair enough, the sound that comes from my throat is the same no matter what I am attempting to say, and sounds like 'urrg'. Penny was asking me questions from the kitchen, so no matter what the reply it sounded the same, 'urrg' so exasperated Penny says OK one 'urgg' for yes and two for no.That now works. I check out my voice periodically to see if it has miraculous come back to normal.  On one such experiments Penny and I were in the wet room having showered. Penny looked at me expecting me to follow up with some gesture as to what I wanted, but no I was just testing.  Penny, being so caring, told me if I keep doing that I will sound like a retard! People used to get arrested for less. Oh boy did we laugh

i's dotted and t's crossed

Oops, we both overslept again this morning and it isn't a Bank Holiday and definitely not raining. Still meant we weren't sat around waiting for the the nurse. PEG re-dressed and not smelly and the over granulation is smaller and less angry today so the healan tape (which has a steroid in it) is working.
Having been a project manager and having silly little obsessions, like all my clothes have to be facing the same way on hangers in my wardrobe, I do like to be organised. Today my solicitor came and that was a good job done. Sue came this afternoon as we are planning to go out tomorrow to have lunch at my mum and dad's. Penny is cooking tea for them both, chicken chow mien and it smells divine.  It's strange I really fancy it but also don't as I know what the consequences would be. In any case I have had my feed now and too full up for chicken chow mien. (was there an Aesop's fable about that?  The fox and sour grapes, I think.)  I need to do a poll, I thought Aesop's fables originated from Greece but Penny is of the opinion they originated from India. Click funny for India and and boring for Greece. Feeling a lot less tired today. I am managing to read books now on my iPad, so pleased with it and the iPod which both have my speech programs loaded.  At least now people have stopped whispering at me when I whispered a few words they would reply back in a whisper, so we would all be straining to hear each other.

Monday morning feeling

Oh dear both Penny and I overslept, but there again it is a wet Bank Holiday so a lie in is OK. Needed a bed change as all wet from a leaky hot water bottle. Luckily it had gone cold. Lesley popped in and we had a good natter. I am struggling to keep my eyes open. Edith and Belinda came this afternoon. I am so embarrassed, I must have nodded off again and before Belinda left. I hadn't said thank you and have a good trip. I have had better days but obviously needed the sleep. My temperature has been up a little and I am suspecting the PEG as the culprit as oozing quite a bit despite being dressed and thoroughly looked after. Belinda brought me a scarf she had knitted as I had been so cold. I had my gloves on again today but we are promised warmer weather. Night xx

Happy Birthday Jill

Really enjoyed watching world class football last night, Messi is amazing. Busy morning, Bed change(oops), shower, my friend Gail arrived all the way from Goring, district nurse, who changed PEG dressing, looking lots better already, Steve, Peter, for communion and Edith. Gail and Edith gone off to garden centre. Steve brought his holiday photo's of the Lake District so will enjoy those. Is it me or is it very cold? I am sat in bed with gloves on (the ones Steve and Julie bought me for Christmas). I had no idea I would be wearing them in bed in May. I am on my own having a quiet moment. Penny has done the ironing this morning. My good friend Lesley may pop round later or tomorrow,which will be good. I think Ellie needs to go on a diet, she is getting quite big now. Might just have a doze. That was a very good sleep. Scrabble won't load which is a bit disappointing. My garden is such a lovely sight and Gail has worked so hard to conquer the bind weed. Ellie didn't attack Edith today. Told Gail the prawn story where Sue was given a dish of prawn curry by Penny. There was a whole prawn head so Sue politely asked if that is also eaten, so as not to offend Penny in any way. Oh yes says Penny we eat the head. Sue proceeded to crunch down on the prawn head exterior, managed to coheres the very long tentacles and took one almighty swallow to get the head down. It almost made me thankful for being nil by mouth! What Penny meant however is they suck out the innards of the head and spit out the shell. I will be laughing about that story until the day I die.

Look what landed on my bed?

Today will be a quiet day. Well it was a very quiet morning. I woke up feeling a little under the weather so Penny kindly gave me a bed bath as I just couldn't face being hoisted and showered. I then fell fast asleep until just before lunch. Penny bought Ellie crumbed ham and me a finest chocolate mousse, which helped my recuperation no end.

Jo and Peter came up with the new born guinea pigs this afternoon, they are all so cute. That's the clever mum in the middle. Ellie, not to be trusted with anything she could possibly eat was in her hutch. They also brought me a lovely plant (not even going to attempt to spell it). While Peter planted and watered the garden, Jo and I played scrabble. I was fairly beaten again. Football tonight, not expecting to watch the whole game but if I can catch the beginning I will be happy...Com'on Barca. Had it been any other team bar Manchester United I would support the English team. I like the city of Barcelona too. Andy and I stayed in a town just outside the city called Sitges. A very chic and spotlessly clean town on the sea front. We stood out a bit when we went for dinner as the only mixed sex couple, not that it worried anyone and I would strongly recommend the place to any of my friends. That reminds me of a very dear friend, Sally who was taken from us with aggressive cancer. She taught me so much about humanity and know I am a better person from having known her. God Bless xx

All the way from NZ

The district nurse came today and put some healan tape on my PEG which has been oozing quite a bit recently. This is very good tape and should sort it out in no time.

Jill's parents are over for 2 months from New Zealand where they emigrated to 4 years ago now. It was great to see them again. Ian was my Inspector when I was a fresh faced Sergeant at Worcester City...they were great policing days, many fond memories. Joan brought me two lovely plants which are now in my kitchen window. Jill arrived afterwards (late!) and so did my mate Therese (T), so we had a good natter and a laugh. T warmed up my right hand which was aching with nerve pain as it was cold, pure relief. I related the story of when Jill and I were in the police cadets and were camping. We had a sports night at the local pub, darts, dominoes, pool etc. Jill drank too much and was sick right outside the entrance to the tent. I have a fabulous memory much to Jill's disadvantage. More stories of my great friend, Jill to follow, I'm sure.

I had lunch and then my mum and dad arrived. They are very good with Ellie taking her outside to her hutch and back in again before they leave. Ellie jumped out of the run when opened but only went to the back door, no chance of her running away. My mum is suffering with acid reflux, I have every sympathy, horrible.

I had left my speakers on overnight so had to have them on charge. I asked Penny for my Kashmir and she thought I was asking for mashed potato, lol I had to concede they both have a sh in them. I am still finding misunderstandings very amusing, long may it last.

As per a request I have added tick box reactions to my posts.

Sunshine and showers

Sue here today so Penny got a lay in this morning. Sue has been very busy this morning doing all those little jobs I want done and dwell on because I can't do them. Like wiping the skirting board of cat hair. I can see it from my bed in the dining room and for some reason it becomes the most important thing in the world until it is done. Having said that it's the small things in life that are the best, like the first cup of tea in the morning. Drinks go straight down the PEG and into my tummy. I am sure I can taste it. I had thought not being able to drink a cup of tea would be too much to bear but I was also very concerned about how I would cope if I ever lost my voice. However, with technology and my gadgets we have all adapted very well.

My dad went to the ENT consultant yesterday. He had a stroke 16 months ago and has made such a good recovery. He has residue issues but been very lucky in getting back on his feet.

Josie came this morning, she is now fully trained in hot water bottles and drink giving. She makes me laugh with family antics and stories of their not so bright cat, Button.

Ali reminded me of the Shrewsbury flower show last year. It rained so heavy we took shelter in the portacabin disabled toilet. Enjoying Chelsea Flower show on the telly instead this year.

My garden looks very beautiful, so colourful.

Ah as no surprise, we had a door knocker back but fortunately Sue was still here to see him off.

And my portable oxygen arrived, very excited as I can go shopping without concern of being in Bob on bouncy roads. So for me today more sunshine than showers.

Day Hospice

Edith has never done anything to Ellie but as soon as she see's her she goes in killer mode and attacks her toes with teeth and claws. I shouldn't laugh but it is very funny watching Edith dancing on hot coals trying to protect her toes. That was this mornings entertainment.

Every other Wednesday I go to day hospice at St Richards. I know one of the founders of the hospice, Aunty Jeannie. There are nurses and a Doctor on hand to look after any immediate problems. There are volunteers who do all manner of things to make it an enjoyable time for patients. Initially I was very resistant to being involved in the creative therapy, until Frans (artist and volunteer) came. Not sure how be he got me painting and making. Some of my original things were Tacky by Jacky but under his guidance I have slowly improved. Today I came home with a leather bound sketch pad, made by Frans for me. My contribution is to choose the colours and design when it is anything fiddly. The leather is scraps from the Morgan factory in Malvern, where my friend Nigel (MND) used to work.

When possible Sue comes and picks me up at lunchtime as I find the whole day a bit exhausting. I only used to sleep in the afternoon in any case. Sue came at lunchtime and we quickly swung by Waitrose to get some provisions (we were very restrained shopping for a change, in fact we had change from £25) and then for me straight to bed for an afternoon kip and warm up. I tried to do my blog but was so tired that I have come back to it this morning.xx

Happy Birthday Jo

Meet Wendy my MND Association visitor. A remarkable person who volunteers her own time to comfort, console and care for people with MND. We had a good laugh today. We were talking about communion and I said I had the very smallest bit of the host. I did cough it out once and the deacon and I were desperately looking for it to put back in my mouth. Thankfully we did find it. Wendy stayed with me even in the early dark days when I was being medically retired and not in a good place. We can laugh about it now, which is good. I liken the diagnosis to the stages grief, probably for the life and aspirations lost. I am in acceptance stage and in a very good place. Wendy says she only comes for the coffee, so got her the new Kenco in the silver tin, which is an instant that tasted like ground. It's very good.

Vampire came shortly afterwards. Joyce can get blood where others fail but even she was struggling. After two attempts I gave up a little of my blood. It doesn't normally bother me having blood taken but this was a little on the painful side as has to be taken without a tornique for some reason. I feel OK so I'm sure it will all come back normal, it was the right colour at least.

Edith been this morning and given me a cup of tea and will make me one this afternoon. I didn't sleep at all well last night (was it the coffee?) Feed delivery came which means I have all my meals for a month, great. Ellie has had a good lunch, ham and creme brulee dish to lick. It is impossible to keep ones eyes open when stroking a purring cat. Had a great sleep in time for Edith to do my hot water bottles. Belinda came and did two toilet runs and fed me my feed. Mark came and he is off to Lourdes next week and will light a candle for me.

A good day and glad to have had an afternoon nap.

Get well soon Richard xx

Ellie sat by the patio window, quite unimpressed it is raining, but ham slices helped lift the gloom and then the sun shone so she was back in her beloved den. My friend Lesley popped in this morning on her way to work, bearing soup so very pleased. Had that lunchtime, lovely, straight down the tube. Also bearing a rhubarb crumble as Penny was curious how it tasted. She loved the crumble, not so keen on rhubarb, however. The NARPO newsletter came in the post today, always a cheerful earful with a page of death notices. Still got me into the right frame of mind to sort out my affairs with my solicitor, she is also a Christian and a truly lovely lady. I have a real sense of relief that it is sorted and updated with care for Ellie. Steve's timing was perfect to pop in, had a coffee (don't tell Penny as second one today but really fancied it and it hit the spot) and he took me for a wee, so all comfortable. Jo is popping in just after 6. I need some inspiration for my next painting project as at day hospice on Wednesday, any ideas? I am really tired out today, quiet day tomorrow. xx

Bob and Jenny popped in yesterday afternoon. They are good Christians and a great support. Jenny makes the best lemon meringue I know of. I was so pleased to see them, not least because I was desperate for the loo. Penny was upstairs asleep on her break so didn't want to disturb that and I knew Bob and Jenny were coming. They were brilliant, toileted without incident and gave me a drink through Timmy Tube for the first time...fully trained now!

Suzie and Millie came this morning. I adore Millie and love being aunty Jacky to her. Suzie massaged my hands which was bliss as it warms them up and relaxes me. They left at 12 as I have communion every Sunday, the Deacon comes round, who just happens to be my next door neighbour as well, so very handy. The Deacon blessed my summer house with Holy Water and it always has a very relaxed atmosphere in there. I had it made bespoke with a skylight in the roof.

I have received lots of lovely emails about doing the blog, thank you all very much. I feel tired today so will be having an afternoon nap. It's jolly cold and windy today. Looking forward to the football results today, Songs of Praise, Chelsea Flower show and Countryfile. xx

Scrabble

Edith my 80 year old neighbour, who has been a stalwart, came back from her holiday with tales of a trail of destruction behind her, flooded bathroom, broken shower, broken curtain rail and more. Not called wrecker wrinkles for no good reason. Picture is of Edith misbehaving in The Range shop.

I had a game of scrabble this morning with. Jo We had a good game although she beat me hands down. I play on line with friends, James and Ali and Sarah K. Keeps my brain active.

AK Jones a community support officer popped in to see me this afternoon after the incident with the door knockers, to do the reassurance bit. We ended up talking about the good old days when we were both serving. Particularly those size 9 boots, moments. Like the victims of a burglary where the husband and wife both had a bad limp, the gentleman explained he did his on the rugby field, so the bobby looks at the wife and asks if she had been playing rugby as well, "No" she says "I had polio" I related that I have to laugh how many people ask me to give them a call or a shout. Had such a good giggle, I really miss that police humour, which probably makes me a bad person. I think it helps a lot being able to see something funny in most situations.

Ellie has spent all day outside and had sliced turkey for lunch, she is one spoilt cat.

Yesterday Wendy brought the ducks (geese) picture to show me it framed, and I have to say I was quite pleased with it.

Not been the best start to the day, missed a phone call, nurse turned up very late and we have had a door knocker here being very persuasive, just hope they don't come back. My good friend from way back in the cadet and probationer constable days is coming at 12, which on anyone's else's clock will be nearer 1pm, bless her. I am having feed for lunch. It takes ages to go down and smells rank but I need to persevere with it so as not to lose any more weight, especially as chocolate is now off the menu! Penny's entertainment today, apparently the world will end tomorrow preachers have decided according to Yahoo (must be right then), so just in case I thanked her for looking after me and suggested we had a brandy nightcap.

In my diary today is a saying, which I would like to share, Courage does not always roar. Sometimes courage is the quiet voice at the the end of the day saying, "I will try again tomorrow" jiuuuuuuuuuuuuuuuuuhw3e2 and that was Ellie's contribution for today.

Mum and Dad have been today and brought home made vegetable soup so might get that for my tea tonight.

Royal Wedding

My mum and dad at the royal wedding afternoon garden party in my summer house. It was a great day and good food and good company.

Had my hands and feet massaged by Pat the physiotherapist assistant this morning, absolute bliss.

MND might be the first to appear for searching purposes but I won't let it define me. I have however met really good people where our paths would not have crossed had it not been for MND, for that I am grateful. I have had a very active 42 years, going to fitness classes, running, swimming and vigorous house and car cleaning. I had a great career, just sorry not able to see it through to the end at 30 years.

Penny provides lots of entertainment, and today's is putting Ellie into her harness and taking her for a walk around the garden, only Ellie is quite happy to just lay down and watch the nesting starlings. More Ellie antics later, I'm sure.

My MNDA volunteer visitor comes today. She has been such good support and really knows a thing or two about MND. I enjoy Wendy's visits as we do have laughs and serious chats as is appropriate.

Being Realistic

Not feeling tip top today, lethargic after yesterdays adventures but worth it. I did have to laugh at Sue, my Mum and Dad all singing the praises of Morrison's and the good value the meals are, with a free coffee, they are pensioners, well I suppose I am as well, but they spoke like pensioners!

Josie, an ex work colleague popped in this morning. She has a very dim cat called Button and so Penny has coined the phrase, doing a button. Penny is from India and English is not her first language, so when she asked me 'how did I get to the Pensioner's garden party?', I answered, in my electric wheel chair and Bob (Bob is a Renault Kangoo with a drop down ramp and wheelchair straps) What she meant was how I ended up going to a pensioners party, 'ah invite from work.' According to Penny I did a button.

Back to being realistic...loading last years photographs reminded me of all the good times I had with family and friends. I am glad I did all that was within my capability at the time. I have cancelled my holiday to Pembrokeshire and an evening performance at the theatre as I don't seem to have the stamina any more. I'm not giving up but giving in to the realities of what I can achieve. I have an army of people who have helped me live with MND and make all things possible. I applaud each and every one of them. I am so blessed with good friends.

Good Afternoon,

What a day! First the district nurse Tim came to do some housework for me and very successful it was too. I am blessed with good district nurses and Tim is a star, I feel safe with him even when feeling poorly, he reassures me.

I had a lunch date today. I was meeting my parents at Morrison's cafe for lunch. I took my own, obviously but the mashed potato caught my eye but I resisted given that the chocolate incident is still very fresh in my mind. We had a good natter and a classic saying came out,' You can't talk' which I had to quickly agree with and made us all laugh. I won't name the person as special between the four of us. I am so pleased I can laugh and my family and friends can share that humour.

Having had lunch and said our goodbyes, Sue B and I went shopping, oh boy can we shop, £108 later...I'm just hoping Sue's bill is the lion's share, given I don't need groceries. I do have a thing about shower gel, I just have to buy it.

Ellie was pleased to see us back home and is enjoying some fresh air. xx

Good Morning.

Sue leaves today to return to Bedford. I was born in Aylesbury but grew up in Bedfordshire. My nan lived in Clapham and I would often stay with her during school holidays, even lived there for a while. My nan was a wise lady. I often think of the sayings used by my nan, never sleep on a grey cloud, look after your pennies and the pounds will look after themselves etc.

Just had Pat the physio assistant come to stretch my legs out and massage my hands, absolute bliss. Pat has been with me throughout my illness.

Today I feel very tired, probably in part due to the shear energy used trying to extract the chocolate from my throat and the tablet given to me by Penny, my carer, that relaxes the throat muscles when choking.

Ellie the cat had a mad five minutes this morning which is normally indicative of needing to use the lit tray. It was a big job this morning, even she ran away from it. She is outside in her posh rabbit hutch and run now getting some fresh air. Ellie is a house cat and not allowed to socialise with other cats as she has feline aids and only three legs.

Just woken up from a good two hour or so sleep. Missed Songs of Praise but Country file on at 7pm, essential Sunday evening viewing. I had tried and was unsuccessful as I failed to bring a chocolate orange cream from a tin of Quality Street under control in my mouth and had that awful sensation of when it makes a bid for freedom down the wrong hole, which brings on an Oscar winning performance. Tears down your face, the tongue forced out as far as it will go and with very big back slaps the offending article flies out into a strategically placed tissue. Oh the joys of being nil by mouth but the draw of chocolate is just too much a girl can bear,

I suppose this is like a dear diary but sharing with anyone who is interested. I have a great summer house but this afternoon it is raining so we will have to take a rain check on that. My oldest friend, we have been mates for 40 years now, is here and we are chilling. Sue is six months older than me.

Ellie, my mad cat is has just been excluded from the kitchen by Penny my live in carer. There again Ellie has been known to help herself to ham off a dinner plate! Penny is cooking chicken curry so some of the most divine smells are seeping through.

This morning I had a visit from Paul, the gardener, but also a communion giver from my church, The Sacred Heart. After cleaning my soul the district nurse arrived to clean something else. This treat happens three times a week. Unless is it explosive diarrhoea I am not able to shift it myself.

Where on earth have I been? January 2009 was my first and last post. I was quite poorly in 2009 and had three visits to the hospice with PEG infections. 2010 I was getting on with life, enjoying myself with days out and a holiday in Pembrokeshire. 2011 and I have slowed down a bit but still OK. I have lost my voice this year and so communicate through an iPad, which was bought for me by Chris and Joyce.

Lost a friend to MND on Easter Sunday and she kept a blog so have taken over the mantle in her memory.