Thursday, 31 January 2013


It's Thursday at the very end of Jan 2013.. I've Blogged for just over a year and as of this moment I have had 20103 hits.... Thankyou... Thankyou ... Thankyou.......

I do hope I have helped my family and friends to keep in touch.
I do hope I have helped, in some way,  others with MND............ to keep fighting......... Thankyou .

Next target 20500 by my birthday on Feb 17th !! I'll be 64 then ... and as a big Beatles fan I do hope, You Will Still Need Me, .......if not actually feed me, When I'm 64 !!



This Blog may well look different ! Actually it does to me !!
I must have pressed a button.. the page width changed and in fixing it I've ended up here !! AND I haven't a clue why..

I also don't know why my Humax recorder has stopped working... despite my changing of batteries... ok put in them wrong way round.. but even when Karen turned them correctly it still didnt work.

Karen and I shared two pizzas... the first was burnt so got on to second... fine !! Timer used that time !!!!

And, as for me having had visit from 3 professionals discussing how I will get off toilet... for 90 mins... I have had too much alcohol... a bit unusual for me now !!!!  But one of those laugh or you would cry times and i turned to Gin n T !!!!

But the big event of the day was that the Blank Blank car worked !! YEY!!!
I got to Tod and had my nails done....
Thank you Becca at Eden Spa........ lovely work and soooooooo friendly as ever.


Wednesday, 30 January 2013


So,.......... dentist visit this morning. Got up at 8:30 and had arranged for Laura to come early so that I could shower...

So dear Laura, arrived at 9:30... this was a big concession for her as it meant she didn't have a leisurely start and,in fact, had to take her partner to work early.... so thanks for being helpful Jess, and I hope the cuppa set you up for the day !
So yes, Laura arrived and pushed me into the shower.

 Showering is a major problem in my life! I hate to be unclean and love the fresh feeling following a shower.... but after an episode whereby I had GREAT difficulty transferring from electric chair to shower chair a few weeks ago, I decided that for peace of mind and indeed safety, I would no longer shower when alone in the house.....

 I do wash and dress myself but simply need the reassurance that someone would be there should I stumble.
At 10:00 Sarah, podiatrist arrived and changed the dressing on my toe. It is healing nicely... great. Sarah left with a promise to return next week to check toe and to give me a foot massage... wonderful !
I got dressed , had half a cup of coffee and set off to go to Tod for dental appointment.Got in Green Van... and to speed things up, got Laura to do my set belt.... Thought something was funny.... a beep beep beeping noise. Started engine, closed rear ramp and door.................
Well no, tried to close ramp and door............... it wouldn't.......... it didn't ............ I tried engine on......... engine off........... 
THAT B***** VAN/CAR/ THING !!!!!!
AGAIN !!!!!!!!!
So, for the second day running I had made a great effort ! And great effort it is too......... I feel really ill each morn.... not just tired but often ill.... stomach ache head ache... well general body ache.......... 
I do know that after breakfast, coffee a cigarette and my meds that in 45mins or so I will be Ok....... but until then I simply want to crawl back into bed and stay there. It takes great strength of character to do more than sit in wheelchair and feel very sorry for myself ......
So character much tested ........ I rang the dentists, who simply couldn't understand that the back door of my car wouldnt close and were even more mystified when I explained how I accessed the WAV, what a WAV was etc........ It was left that, on this occasion, I wont have to pay for late cancellation but in future .... ?????!!!!!! 
So no dentists ! Drank the now cold, other half of the cup of coffee. 
Rang the RAC.
This time Ian came ....... nice thorough man. Had to read the handbook..... found no fault ....... Why ? It seems the battery (new yesterday) had to reset itself ???? But it also had turned off the airbags ????? 
Don't ask me..... I'm only the driver who wants safety and reliability ! BUT he did suggest we went for a drive ........... So once again, in pouring rain and heavy windy blusters  I went out. 
All was well.
Watch this space. I need to go out tomorrow....... the most important appointment .... It's nails day !
And if they don't get done , well ,all I can ask, is that you send me a hug via the nearest funny farm !!

(And just to add to the stress.. whilst writing this the settings went funny.... so if this is odd, it's really not me it's the computer !!! Bad workman I hear you say !!! LOL!!!!)


Tuesday, 29 January 2013


1 / 2
There are two things in particular that I remember from lessons with Ms Jones – as I still instinctively want to call her nine years after our A-level English class left that room on the top floor of the sixth-form block at Edmonton County for the last time. The first was the drive of her dramatic energy: her ability as a teacher to use her emotions and ours to pull us moany, tracksuited teenagers through what seemed like endless reams of bloody Carol Ann Duffy.
The other was her endearing love of what she freely admitted was "depressing literature". We didn't have to study any Sylvia Plath poetry for our course, nor Wuthering Heights, yet those names stick in the mind when thinking back simply because of her self-confessed passion for them.
Terminal illness changes the context of everything in life, big and small. Those two small memories have certainly felt different since Lindy became one of the 5,000 people in the UK to be suffering from motor neurone Disease (MND).
She began developing symptoms of the condition – which involves the steady decline of the brain's ability to communicate with muscles in the body, resulting in the gradual loss of bodily functions and usually ending in breathing failure – just over two years ago.
First it affected the muscles in her tongue, then her mouth, neck and arms. It now means that not only can she not teach any more, but she can't eat or talk. With her mouth too weak to chew or swallow, she is fed through a tube into her stomach, and relies on a breathing ventilator at night.
For now, she still has use of her fingers and communicates by typing on her iPad mini, though missing the social aspect of chatting with friends and family is "almost unbearable," she tells me. "I now feel terrified of anyone trying to talk to me. It's like being a toddler."
Typing has, however, allowed her to self- publish her memoir, The Voice In My Head Is Perfect, a deeply moving but often brilliantly funny book recounting her experience of being diagnosed with MND and trying to cope with the inevitable, inexorable decline. With all profits going to the Motor Neurone Association, it is now also being recorded as an audiobook. And the process of writing it has provided at least some form of catharsis.
"I have always kept diaries and written stories, so when I was diagnosed with MND, writing about it seemed something I just had to do," she tells me. "At first I felt too depressed to write, but it has given my life meaning and purpose now that I am no longer able to teach. Although obviously it isn't really the book I ever imagined myself writing, as getting MND is not something the average person spends much time thinking about, seeing the finished book was an amazing experience."
Visiting her in her house in Enfield, north London, which she shares with her husband Gareth, two sons in their twenties, Robbie and Owen, and her loveable dog Scrappy, we laugh as we discuss schooldays and our class's creative writing trip to Wales – recalling how she a found an empty bottle of vodka under the sofa after my friend Tom and I smuggled in some booze for the group, bought from a local petrol station. But such memories are bittersweet.
Though she is in no physical pain, her condition is rarely comfortable. "I have to wear a collar to support my neck. One of the most distressing aspects of the disease for me is my uncontrollable drooling, and now my arms are so weak I am unable to wipe my own mouth thus having to have someone else to do this, which is humiliating. I imagine people looking at me thinking I must be mentally subnormal."
In time she will have to communicate through a computer detecting words through her blinking patterns, and she may only have months to live. "It all depends on how my respiratory muscles hold up," she writes. "I was told last May, after a lot of pushing, that I had about a year. But it depends on my health. If I get a chest infection it might kill me. I feel very afraid of the future so I try and live from week to week."
Remembering the fountain of enthusiasm that once sprung from her lips in those lessons has therefore become hard to take, for her and others, since it has been corked up inside a willing mind but a failing body. As for her love of "sadcore" writing, her temptation is to wonder if it was some kind of curse, as she moves the search for poetic justice that informs the reading of many books to an examination of her own life.
Along with writing to a prisoner on death row, thoughts of her grandma, "Mad Mary", having a lobotomy in the 1960s, and the trauma of a false accusation of assault made against her by a pupil in 2005, "an unhealthy interest in books about death and suicide" is among a list of possible "bad karma" triggers she drew up in vain hope of trying to explain or justify what was happening to her. "I found it very painful going over reasons for why I might have got MND, as no one knows what causes it," she writes. "You keep thinking: why me?"
The lack of medical understanding of what causes motor neurone disease indicates the extent of the challenge still ahead in developing better treatments, let alone a cure. There is currently only one drug for the condition – and that extends lifespans by just three to six months. What makes things worse for sufferers is the lack of knowledge about the disease and its severity among people they encounter – some people naively attempted to reassure Lindy she would live to be a grandmother, not realising how quickly MND usually ends a life.
Stephen Hawking's appearance at the opening ceremony of the Paralympic Games last summer further cemented his position as what Dr Brian Dickie, director of research development at the MND Association, describes as "the best and the worst example of motor neurone disease". "Here we have this brilliant mind trapped inside a body that isn't working, which is the best example, but on the other hand as far as we know he holds the British record for survival," he explains. Unfortunately, Hawking's case really can be classed as unique. "He's lived with his disease for more than 40 years. That just isn't the normal reality of this disease, but it's often how the public perceive MND – they don't think of it as being rapidly progressive, relentless and terminal."
But it is not only the public who lack awareness. Farah Nazeer, director of external affairs at the MND Association, says many in the health and care services are equally ill-informed due to the relatively rare number of cases, meaning diagnosis can be delayed and palliative care can be painfully slow in being arranged – a particularly bad situation given that half of sufferers die within 14 months.
Ms Nazeer says the problem is compounded by the National Institute for Clinical Excellence's "appalling" lack of any official guidance on the disease for GPs. Indeed, Lindy's book comes at an important juncture for sufferers: a parliamentary audit into what services primary care trusts are commissioning for the disease will be published, and Ms Nazeer warns that the results will be "shocking".
It takes around 18 different professionals to provide the various aspects of care needed for an MND sufferer, but in many places these services cannot be obtained or are not co-ordinated in an effective way. "It's like being doubly discriminated against," she says. "You've not only got this condition but you've got one that the health service just isn't able to respond to or respond to quickly enough."
This is one respect in which Lindy can consider herself lucky, saying that her care from the NHS and the North London Hospice has been excellent. Nevertheless, she feels a "burning anger" at how MND is largely ignored compared with similar neurological conditions such as MS and Parkinson's.
Hopefully, her book might help address that for the benefit of future sufferers. As for Lindy, there is still the writing, as she slips into dreams of being her hero, Emily Bronte, "roaming the moors full of intensity, passion and suffering".
Lindy Jones's book 'The Voice In My Head Is Perfect' is available to buy from For more information on MND, visit



19843... That's the number of hits that my Blog has received since I first started to write, just about a year ago. It would be great if this got to 20,000 by Friday 1st Feb...
Think it may be possible .

But why do I like to know people are reading my Blog... I suppose, selfishly, it gives me a bit of a purpose, a bit of a hope that maybe Im helping somebody ??? who knows.

The original reason for writing, and this is still my prime purpose, is to leave a diary of the events of my life with MND... primarily for my girls and granchildren to look back on in years to come.

In writing this I have found I do love trying to express myself in words... a new thrill..   It does take time though.......... so thats why it's not every day... Please understand.



So here I am at Misty morn, sitting and waiting for RAC!

 It was quite warm this morning and extremely snugly in bed !!  So, as if you know me by now, where did I want to sty ?? Yes, you got it ... in bed.

Mornings are the roughest time of the day for me. I wake achey , needing the loo (like everyone in the world I expect,) and having to hoick myself out of bed, into wheelchair... etc.... all of this involves standing turning when you just feel sleepy !!! Not easy. I am also very slow and ponderous in my movement, I fear this could be a fall time... but I guess if I did I would be so relaxed that I wouldnt hurt myself !!!!  LOL !!

Anyway , yesterday was exhausting as it involved a shower and a hospital visit to see Dr Thomas (lovely man), at the breathing clinic... I had decided to drive with Barry (riding shotgun) , as I hadnt been out because of snow, for some time,  weeks (?) . But it was sooo blustery and so very wet (sideways rain) , that I decided to take up Barry on his offer to drive me in his car.

The visit went well. Dr Thomas allowed me the time to chat freeely and ask about all sorts of issues re muscles and breathing. I found I have lost 4K.. not entirely surprised, I do realise I'm eating less, get tired halfway through a meal....

We didn't getback to M.morn till nearly six. Barry made me a coffee and then departed, having made sure I needed no other help.
.......... I was shattered , once again, by nine but stayed watching TV untill 10. Then off to bed.
Laura had moved my TV so it was much easier to just rest and view. I enjoyed Lewis which I had recorded.

Light off. Sleep time.... but no ! Once again it illuded me ! RATS, RATS!  RATS!!

So that's , once again, why  I was so sleepy this morn.

BUT 11:20 I had an appointment with Dr Millard at Tod.

Though I didn't want to, I got breakfast, and was just about to get washed and dressed when the ambulance transport arrived to take me to Overgate. Overgate had neglected to cancel or at any rate there had been a mix -up. This apparently costs the hospice £56 , so I do hope it was the fault of the Ambulance service and not the Hospice or they will be charged.

So then I got washed , dressed and then needed a little rest before setting out to get in car.

Got in, locked down, seat belt on straight away... the gods were with me. So I decided that after appointment I would go to the florist and treat myself to some flowers.... Turn Key...

Beep beep beep... urrrrrh bbbeeepppp beeeepppp urr urrr urrr urrrh !

No way was the Blank Blank car going to start. RATS RATS RATS !!!!

So , No way was I going to get to Tod................. I would have to ring RAC.....

Got lunch.. even though Ginny is coming to dinner tonight, I was really hungry so made fish and chips......

RAC arrived. It was the battery. I now have an even more powerful one 640 v or watts or whatever the unit of measurement is..............

Because of the snow and me not using the van, the battery had drained. But having checked, the RAC found that there is a bit too much drain and suggested I take van back to adaptations centre....

Do I want to do this ?
NO not really, it could come back worse than it left me.... better the devil you know. Just need to make sure I go out at least twice a week.... so that,s the plan.

Never mind the MND, my BB van/car could do with a Blog all of its own !!


Sunday, 27 January 2013


I'm feeling good.

This weekend has been happy and no new MND probs !!!

On Friday the expected snow arrived.... snowing me in still further. !

BUT: I knew that my good friends , known as the Coven , would be coming on Sunday to try to dig me out... however as the forecast was for a thaw by Sun and rain, maybe the work would not be necessary.
So Saturday: On Fri, I had had a large canvas brought down from the attic by Laura. I started to paint.... I had to prop it here there and everywhere ! to access it and get the paint anywhere near.... It was exhausting, but not impossible... The painting is coming on well. Just wished I had had the confidence to use a new canvas.... the texture of the under-painting does show through... need to try to use this texture to my advantage !

I was so shattered ... I had made chicken soup too... that I went to bed at 10. But then , Oh Joy !... Meet The Parents , was the film. I know it reasonably well and so dozed as I watched. When it was over I turned and slept..... really well !

Sunday , today, I woke , had breakfast, and was about dressed as Elsa arrived ... just in time to put on my socks, foot-ups  and slippers on.
She cleared the kitchen and then Liz arrived with Leah, a wonderful golden Retriever   AND her own home-made croissants...

Forgot to say.. all snow gone!!!

Maria and Barry arrived shortly after.

We all had a great time drinking coffee and eating croissants, a real triumph, and chatting....... not a mention of MND... I felt like a real person . YEY!!!!  
Maria did massage my feet whilst we chatted, the only nod to the MND.... but lots of people like having their feet massaged , so it didnt have to be because I have this (blank) disease !

I have painted until now , and after this will heat my very chicken-y soup for dinner....

Now from  tomorrow things might change. I have breathing clinic on Mon, Psychiatrist on Tues, Dentist on Wed and then... OH YES !!! Nails on Thurs !!!!   FRI , a day of rest. I was invited out for lunch, but realise that afer such a busy week I will definitely need a rest............


Friday, 25 January 2013


Today has been simply lovely.
A complete contrast to the stresses of yesterday.

True I did wake with a neck ache. This was at 8:30. Had a coffee , cigarette (!), and then went back to bed ! YEY!!

I knew Michaela was due at 11:30 and would give me a massage.
I got up at 11:00. Didnt bother to get out of PJ's.
At11:30 Michaela arrived. WOW wonderful massage, headache much relieved.
At Noon Laura arrived.
Not too much cleaning more a cooking and sorting day. Lots of roast chicken meals made for the freezer, a large canvas found from the loft and my bedside light moved so that I can put it on... ie not use a torch!  (Well dishwasher and washing stuff done too.... and I had a shower !)

Late afternoon I had  peace to paint !
A few txts from friends and two phone calls..... all  lovely.

Laura and I talked about a track "Seasons of the Heart " which I had included on my Christmas radio show... John Denver.She said did I know a song "Poems , Prayers and Promises". I thought I didnt... but when I played it on YouTube I realised I did... but not the name.... so here it is.

Please do enjoy, its a lovely lovely song..............
Thankyou for reminding me of it  Laura


Thursday, 24 January 2013


ok.. So we who have MND are terminally ill.

( I know others are too and I'm not dismissing them in any way, but just writing from my experience... though I guess that the issues for this post, may well be the same for us all. )

So I think we may think of our time left in one of two ways..(or at least on the spectrum).
1. I'm ill , I've  got MND .. (sort of becoming defined by the MND, letting the MND take over )... OR..
2. OK I'm terminally ill, I've got MND ,but that apart, I still want to be me.

I feel I am in the latter camp.

I desperately want to be known as Nikki Woodman, who happens to have MND..

BUT this is so hard to manage.

Take today for example.

I woke at 9:45, ( late I know, and a nod towards the MND, ie difficulties of sleeping, it's awkward as I don't turn and thus get pain , thus don't sleep well. )

I was washed dressed and had had breakfast by 11:10... again I wish this could have been faster, but it takes a very long time to do these tasks. In fact I was so shattered by this time I didnt actually get my foot supports on.

I rested and at 11:30 Michaela, Physio arrived. I asked her to put on my foot supports for me.We discussed the bed and sleep issues. The reason for this was that: On Wed I had had the topper mattress removed as I was very VERY hot in bed and found it difficult to get into bed as it was ,by  2",  higher.  BUT last night I was boiling too.. so it wasn't the fault of the Topper. I also had pain in my hips. I said to M that I would just take paracetamol for the pain. She then pointed out that my skin rips ( I have a silver dressing on toe when I scratched an itch and the skin stripped off ). So therefore if I could reduce the height of the bed and keep the topper to try to prevent pressure sores it would be best.

She set to work. Off came the castors on the bed reducing the height by 1 1/2" height.... tonight I will see if I can get in. She remade the bed putting the topper back on.
We then talked about my getting into the new  Rise and Recline chair. She brought a 3-legged walking stick which I can use to support myself whilst getting in the chair . The problem I have is that my left leg wont support me , which it needs to, to turn to get into the chair. By putting my weight on the stick I'm more supported and able to access chair.

At this point Rose and a student arrived, they are wheelchair services. MY neck rest has not been able to be adjusted to support my neck for several months. Thus I have headaches and Michaela has to massage me as frequently as she can, though I am aware I take much of her time allocation. By removing the support I have for my lumber area the headrest was more in place... but it's a compromise... headache or backache !!!!
I will got to the centre, ( soon I hope ) and items will be suggested to customise the w. chair.

They left.

10 mins alone, and then my friend Janice arrived. She helped loading the d.washer , putting Tesco stuff away ( he arrived mid w.chair session) and the unpacking some art materials ( they too arrived during the w, chair session ).

Janice and I shared lunch and a glass of wine. She left at 5:10. I very nearly went to bed , desperately tired ! But had a coffee and the phone rang.

Julia , OT, asking me about the Rise and Recline chair. I suggested that support needs to be in place in advance of the problems, and they are better placed to know what is likely to be the next event. However, I flagged up that getting off the toilet would soon be a problem, ( Im having to rock back and forth to get enough momentum to get off... I feel this will not work soon... ) .She suggested a hoist.
AH! I said, and who will work it ?
AH! she said
..... these matters are left floating.... I hope some thought will be given to this problem and that there will be a suitable solution.. and that it wont be to have a catheter or to wear nappies
.... not yet at least....

So off the phone. It rang again. My friend Elsa with some ice-cream.. YEY!!! She only stayed 15mins...

Then I started to write this.

So, this Blog is about time for me ....... What time...?????   I can't do without medical support... I don't want to do without friends.... but I do need time, just to be me. 

Being me... ME...
ME the person who may longer go out to work , who may no-longer do voluntary work,  may only go to the cinema or theatre occasionally, may want to watch a TV prog quietly ( or listen to the radio or read), and who desperately wants to paint.

My painting is one of the times when I am me. My painting style has adjusted because of the difficulties of MND... But I actually find solving these problems interesting. A way to beat the B disease !
I seem to be painting on smaller canvasses. I use a lot of Liquin Light ( the paint then flows well and is more controlled), I also find using shorter brushes easier.

I haven't Blogged for 2 days, nor been on Facebook, nor Twitter, nor answered a number of emails and txts.......

BUT, can you see why? Its time. The very little , very very little,  bit of time I have,  I simply want to be me... and finding these moments is so so hard !

But these moments are so so important. No ! More than that ! Vital !!!
I do NOT want to be a MND victim, (Yet  I can see how it happens ) , I really , really want to have quality time for me.

It would be easier with money, I could employ a PA to take over these things, or  easier with a partner, who could at least do some negotiations or use a hoist, it would be easier with the right equipment at the right time (good will and professionalism always comes from the medical people, its the funding where the gaps lie ).
 It would quite simply be much easier without MND !!!!           LOL !!!!

I said to my friend Elsa the other day, this disease is so much harder than I thought it would be. Why she asked?

Well ,I simply assumed that help would be there. That it wouldn't be necessary to go through all the questions, funding issues etc etc etc...
That having MND would simply be enough to sound a bell which switched a support switch which would power into action... sadly it doesn't.

And at the very bottom of this long Blog...
Please world just let me be me.
I have MND, but don't know me for that. Know me for simply being me. Please let me spend some of the time I have left doing the things that make me , me .

Thankyou..... and


Monday, 21 January 2013


I woke at 4:00 this morning... looked out of the window.... mega snow... wind whipping up the fallen snow.... Got out of bed and decided to turn heating up. I wasn't cold, but knew that out of bed I would be, and I HAD to shower in the morn.

I then turned off alarm, knowing that Laura wouldn't arrive. !!  But even though I sent txt to that effect, there was a knock at my window as I was getting out of bed. Laura !! VERY Kind, but completely daft to risk the roads !!! We had a coffee and she turned round to go home. I made her promise to txt as she got home.

I then showered...Difficult transfer, didn't I rinse well enough? , slipped on shower chair..... Resolved: only  shower with help or at least with someone in the house. ( Legs getting v weak ).  Just putting on my slippers when there was a knock at the door..... Bethan (OT) followed by Mick and Dave from Yorkshire Care with my chair.  YEY !!!

I really didn't believe that they would make it through, even though the chair had been promised for noon today .

Well it looks great. A brilliant shade of grey. Actually the same as the original colour chosen for the carpet... (but due to errors in requirements this got changed... too long a story to go into again.) So the carpet is a sort of grey called stone. The bright fresh blue/grey of the chair now makes the carpet look dirty. (This carpet issue  makes me sad, but was beyond my control..... Just ,visitors, believe me , the carpet is clean !)

So, next activity for Mike and Dave.. fix up chair.

Next activity for me, get in chair. Plan A:I drove at right angles to it. Plan B: I drove at 45* to it... When I stood, I simply could not get in ... my legs don't lift.... this was a fear I have had... AND ,after waiting so long for a chair, it was a heartbreaking moment...... and yes, tears came to my eyes...

So, get a grip,  Nikki !!!
Plan C: If the chair was by the window I would be able to use the window sill to support me.
So Mike and Dave moved sofa, tables etc etc ... but it didnt work... too long a stretch to get to window sill...... I didnt feel safe.....

Plan D:  drive head on to chair.... move wheel chair out of the way by reaching .... sort of worked but difficulty controlling... then Bethan suggested using "Extra Hand", or litter picker as I call it .

Plan E:  I then drove up.. and used litter picker to move w.chair away.
 It worked, but I didn't feel 100% safe.

Physio Michaela is due to come in on Wed... I will practise then, unless anyone pops in and then I will attempt... but wont do it when I'm in the house by myself... too risky.

So I said goodbye and thanks to Mike and Dave.. and mentioned my Blog... so if you're reading this guys, Thanks for your help today.

Bethan left and at 1:40 I got breakfast... didn't mention that I hadn't eaten up till then did I?

At 2:30 I got a jacket potato....

At 3:30 I decided a rest would be in order.
Woke at 5:45 when Chrissie rang.
Watched news....... Staying frozen for the rest of the week... OH Joy !!


Sunday, 20 January 2013


This is my second go at this contribution... first one perfect, and quite long , but I did it on the I pad and lost it !! RATS !!!

So.......... this weekend : made happy by a lunch from Elsa on Sat and a late brunch ( well so late it was a lunch! ) brought by Liz... also calls from other friends and family.
Thankyou all, you are the ones who make living with this horrid disease possible... you give me the strength to not be an utter moaner !!

But talking of moans here's one ! I needed a shower this morning... and didn't have the energy to do it..... how demeaning !
I have contacted the company who will come and shower me, they will be back in contact in the next two days..... another step forward in the loss of dignity !!

Have painted a lot. Enjoy it so much, I get so involved it's great.... BUT

I have found increasingly that I have to use my left hand to support my right hand , which holds the brush.

SO... On the bright side a two handed painting... must be twice as good... must be twice the price!!! LOL!!!

Last thought.. Rise and Recline chair ( which Ive waited for for 7 1/2 months, should be delivered at noon tomorrow..... But with the snow ?? Well I'm not holding my breath......
Watch this space !!!


Friday, 18 January 2013


Once upon a time there was princess, her name was Princess Nikki Rose.
Sadly this Princess had a terrible disease. It was called motor Neurone Disease. Because of this terrible disease, she didn't naturally move in her bed at night. This caused her terrible pain in her hips.

About a month ago this became , not a trivial issue, but a major issue as she was awakened each night with this terrible pain in her hips. She managed to turn herself, but was then wide awake and in such , such pain !

The princess decided to talk to the amazing helpers OT Bethan and Physio Michaela... ideas were put to the Princess...

Firstly, she could have a lever which would help her rotate. She had one inserted into her bed. This helped with the movement into the bed... She no longer had the indignity of rolling, commando style, to get into the bed.

But then there was a problem the Princess couldnt turn over. SOOOO She had another lever inserted. This helped, as she could just about use it, to help turning over and turning off the bedside light. (The light was difficult though, she couldn't (can't )put it on herself. So visitors were asked to turn it on if they arrived early evening. On the rest of the days she managed with a torch. This was a precious magic torch, formally used for Glastonbury Festivals. She managed/ manages.

But for the last few weeks she had been waking about 4:00 am in terrible pain, needing to turn. Even when she tuned with the levers she was left in pain.

Having talked to the Empresses Michaela and Bethan , she was given a choice. A hospital bed with a mattress powered by electricity... but which would make a humming noise all night. OR a simple topper for her bed.

Whilst the Princess knew that eventually she would have a hospital bed, with its attendant noise, she didn't feel it was necessary at this time and would rather a simple solution.

So Men arrived yesterday bearing a Topper mattress. They lodged it on her bed and it added over 2" to the height. Then the bed looked very high. Just like the former bed of her Princess friend who had had a high a mattress with a pea placed underneath...

But our Princess , Nikki Rose, had no Pea placed underneath.

AND for the very first time for weeks  our Princess was able to sleep for 8 hours ! True she woke at 4:00am to turn, and was slightly uncomfortable, but she experienced no real pain, and was able to turn and then immediately sleep once more.

In all the Princess slept for 8 hours. Eight hours !! She woke refreshed and had such a happy, happy day. 

I wish it could end , And She lived Happily Ever After... but with MND, that simply doesn't happen.... even in Fairy Tales....


Thursday, 17 January 2013


I cant believe it's nearly a week since I last wrote here. and yet the time has passed so quickly.

It's been a strange , mixed up sort of 6 days.

My daughter Eliza with her husband Andrea and my grandchildren Sweetie Pie and Mallei visited for the weekend. Well you wouldn't expect me to interrupt my time with them Blogging, would you? I see them more frequently now but it's still not every day, as they live in the Midlands, and after all ,have their lives to live. So it works out at about every 4 to 6 weeks.

They arrived at 10:00 at night. The little ones had been asleep in the car. BUT I was so thrilled as Sweetie Pie came in with her sleepy arms open to hug me.
How Happy, happy, happy this made made me.

We played a few games over the weekend, but the best two were a form of Netball using screwed up paper made as a ball and chucking it into a waste paper bin. The next best was a screwed up paper (again waste) being collected using my "Extra Hand " litter picker !! Then placing the paper in the bin !

On Monday the snow arrived. Two visitors weren't able to get up to see me, and my PA was unwell. I then did something very silly. I tidied, (in a fashion), loaded the washing machine (twice) .... and generally ended up exhausting myself.  So much so ,that when C came to walk me , I could only do three steps before I felt I would collapse.

I decided, then and there , that I would not be going to Overgate Hospice the next day.

So the Tuesday was free..... I managed to get paper work in order and also to paint. It was such a pleasant day.

Wednesday and Laura  (my PA) came and sorted out my general Chaos.
Michelle arrived to do the planning for care assessment. I slowly gained clarity on the process and so when she said we could stop if I were tired, I said yes, lets stop, but do you have a blank sheet and then I can add my needs as I see them.
This is such a difficult process. You are asked what your needs are, then it's suggested that you wont be allowed that much... A complete  mystery, which is both frustrating,irritating and demeaning !
Sue and Kendrick came and helped with bits like light bulbs and we discussed the easel issue. I find it difficult to reach to paint. Eventually we found a solution using an old kitchen table and reducing the height of the ledge which the canvas sits on. K took it away to make the adjustments.

Today ,at 9:45 ,men from stores came to collect the old (completely uncomfortable ) rise and recline chair and to deliver a bed pad which should reduce the pressure on my hips. (Actually I had wakened at 4:00 this morning in considerable pain in my right hip where I had been laying too long). So tonight I hope for more comfortable sleep.

At 1:00 physio arrived and massaged my neck. It is sooooooooooo painful , I don't have any place to rest it, as both the wheelchair and the (now gone) rise and recline chair, do not give support.
Janice ( my artist friend) came at 1:30. We chatted , had salad and houmous for lunch and some red wine. We had just finished our first glass, when Sue and Kendrick, and their friend Ann, arrived and we assembled the new easel ! YEY !!!! This works YEY!!!! Also K fixed the fridge, I ran into it last night in the w.chair and it got shoved off its legs!!! We shared wine and happy chat. What a lovely day it ended up after the very shaky start.


Friday, 11 January 2013


Yesterday, as I hope my Blog showed, I was upset re the death of Alistair Banks, Alistair the Optimist.


Well there are so many parallels. Ok Alistair was fit and 20 yrs younger than me. But he had the same illness: MND type ALS.
His video interview on Ch 5 shows him one year after diagnosis in a wheel chair. He describes how it all started with his leg . He limped and his foot flapped. (At this point for me, I too wondered what was happening. I walked as if I was drunk, (even at 10:00 am ), and I felt people treated me as such. This was hard to cope with. )
He was a teacher, he was creative.
Alistair was very positive and , I guess , thought that by being positive, he would make his life ,not only , useful, but also may well extend it. Well these are my thoughts , and they may well not reflect his, but somehow I get the feeling that they might well do.
On the Ch5 interview, one year into diagnosis, he states that not only have his legs gone ,but that he recognises other bits are going............... this is exactly my scenario.
My legs are hopeless. My arms and hands cramp frequently and though I still speak with a strong voice, my neck muscles also cramp on occasion. I know they are on the way to becoming weak and eventually unresponsive.

Alistair lived 2 1/2 yrs after diagnosis

The MNDA give a 2 yr life expectancy and the NHS give a 3 yr life expectancy....
average, yes, 2 1/2 yrs.

OK, some people do live a little longer and this is where I was confidently heading..... I thought, no go back on that , feel, that if you are positive, you will beat the averages.

BUT, Alistair was positive, he was so positive, and yet he didn't beat the MND averages.......

So that's why I , personally, am upset.
A selfish view , I do recognise.
I don't wish to be selfish and am somewhat, ashamed of my feelings.

Alistair leaves a wife and small children. Really sad and difficult for them.... I do, so, know this.

For me there is not partner to upset and though I have children, and of course they will be upset and sad, but they both have loving partners and will survive I'm sure, as they will be loved, cherished and cared for.

So a somewhat self centred response to a dear, strong mans death. But I thought I should write this, as this diary was always intended to be my honest views of my dealings with this horrid disease.

Please , to try to be compassionate towards me as you read this. I pray you don't judge this as the views of a self centred person, but more the views of someone whose fears have been unveiled and who is frightened............. and sad.

But I shall wake  with my spirit encouraged by you, my readers, my beloved friends, and also by the visits of my family and  grandchildren.

Who can feel sorry for themselves when there are so many potential joys abounding. I will regain my positivity and dream / no ,anticipate that I will beat the averages.


Thursday, 10 January 2013


So, I havent written for a few days. Why?
Well that comes under THIS COULD HAVE BEEN........  The Ugly, The Bad, The Good.........

The Ugly: The words I used when I dropped the soap in the shower and when trying to retrieve,(and failing!), I hit my head. The feelings (negative), I had  towards the person who woke me at 8:35 and asked me to make an appointment..... ( I  keep books, ibuprofen cream, a glass of water, even a torch by my bed......... but not my diary!!!). How much I wished I could murder Alexander Graeme Bell after the phone rang and rang yesterday, and practically each call gave me another issue to solve !
The Bad: Tired , so so tired, so I had an afternoon nap....... one phone call and two deliveries later, I gave up. Emails to answer. Photocopies of passport etc to be certified, (For the second time, for the same process!!). The fact that I must have ticked the wrong box, though I thought I hadn't, and will be charged £35 for  the morgage money to be given to me. Yorks Water telling me that I use 50% more water than the average single person! Finding out that my house is  Leasehold not Free hold.... (have never paid rent!) Should have gone out today but too exhausted and dragged down by dross!

The Good: Tescos Fish Pie, yummy. Phone calls from my daughters. Emails from friends.Visits from friends. New jeans in sale (turquoise!yey!!!) £9 !!! Very Yey!!! Speedy call back from Wrigley Claydon re Free/Lease Hold info and copy to be sent of tenancy agreement. (999yr lease from 1909... so cant see a prob!). Friends visiting.

So this could have been another of my rant Blogs... and believe me, I could have bored you rigid with the detail!, but I heard of a death today. A man whom I didn't ever meet, but felt I knew. Thoughts of him cause me a sharp intake of breath and  deep sadness.
and thus now to write.......

Because today a great Campaigner  for MND awareness, himself suffering with MND , ALS, died. His name was Alistair. Known as Alistair the Optimist. He was a husband, a father a teacher and enjoyed singing. His record was used by the MNDA as a face of MND . I remember so vividly hearing his words at the MND conference in spring last year.

As a tribute to Alistair I shall include two clips from You Tube.



Monday, 7 January 2013


I woke at 5:00 with griping pains in Tum.......... things not right since illness at beginning of Dec. Resolved : phone Overgate Hospice to ensure I see consultant Rachel tomorrow.. (Sorted this afternoon).

I spent the next two hours awake  and used this time to try to get comfortable and plan for my day.

I had planned to go to Hebden Bridge: Visit the chemists to sort prescription.. (needed on Wed.) ......... Take annotated care assessment form to Social worker( some errors) , book appointment with Psychiatrist ( feeling low some days and need to talk things over, like preparing for the end of life), post letters and parcel to Tam, also get to  form from Post Office which will certify documents are accurate.. needed for mortgage ( though why the hell I can't imagine, as they have all been taken by original broker... why can't he just pass on that he has seen this original info ??!!). Then on to Tod to check access to Philosophy class which happens every two weeks, and I'm interested in joining. AND I NEEDED TO SHOWER.

But I thought it out.
Laura could post parcels.
Laura would push me into shower.
Hospice would/ should be able to certify documents.
Ginny would look at access.
Carolyn would take letter to Social worker, same building.

You do need a brain to be this ill! LOL !!!

I decided to sleep........... woke at 10:50.
Laura came at noon.
We had a coffee and sorted list out .
Elsa took prescription in , Phone calls sorted lots of bits......... more than mentioned here............. lists are great!!!

At 3:00 not 4:00, as planned,  Carolyn and Karen arrived. They put other bed support on the far side of my bed. This will help me turn over more easily. A few accidents occurred,  as I have cables running everywhere...... but nowt that cant be fixed! BUT  Most difficult, is TV not working. Its ok as TV now as I've retuned it ,but the HMDI cable isn't working, so I have to get to bed by 10 in order to ensure I can watch Lewis ! No pause or record as usual. However friends coming round tomorrow and I am sure they will be able to sort cables. (Please). I did do my best to fix this , but getting into the corner in a wheel chair is, virtually, impossible.

Sue came to visit and we had brill chat. But when C and K finished bed, it was time for me to walk. This was not easy, and I'm ashamed that I did weep. BUT, with the new year resolution re Mascara ! What a mess my face was. Mustn't cry too often !!!

They all left, and my scanner which was showing errors all day was my next challenge! I had decided that the bank statement wasn't proof of address, (needed to be certified by Hospice tomorrow), so I thought I would copy a gas bill. Easier said than done. The scanner would NOT copy !!!! RATS !!!! So I thought, trick it! I scanned to computer and then printed. It worked !!!! YEY!!

So I've had my 6:00 GnT at 7:00 !.....Have  done Facebook, Blogged ( here it is) and will be soon heating Pasta Carbonara courtesy of Tesco !!

Bed at 10:00.... Lewis  and new clothes to wear to Hospice tomorrow............ Reflexology to look forward to and to seeing my special mates Jackie and David.

And tomorrow evening.... drinks with J & K and my TV fixed.

What a day !!!


Sunday, 6 January 2013


I asked my college friend Christine ( who now lectures at Homerton) ,that if possible , would she visit the crematorium at Cambridge and take a pic of the book of Remembrance for me.  Today is the day it is open on the anniversary of my daughter, Eleanor s , death... and I doubt if I will ever get to be there again.

Chris said she would do it.

This is the response she sent me :

I went to the Crematorium first thing this morning and wanted to describe
it for you. It was misty and quite mild and I was the only one there. I have
taken a photo of the view before I went into the room. The Remembrance
Books are kept in a small cosy room that has many plants and cards spread
across the floor and shelves. Eleanor's name was easy to spot, second from
the top of the first page of the book as you step in the room. I didn't
know if I would be able to leave anything but I had brought a small pot of
early snowdrops. I spotted a card with some poignant words that I liked
and have taken a photo of the snowdrops alongside the card for you.

I thought the snowdrops would be happier outside rather than in, so I
walked through the gardens, thinking of both you and Eleanor. I discovered
a recently designed part of the garden that is dedicated to 'all babies and
children so briefly known'. It was incredibly still and peaceful just to
stand there in the mist. I left the snowdrops by a mother deer and her
small baby. 

Christine and I had been in touch since 1970 when we finished college, but also met up at Mill Rd maternity Hospital, when she too, was pregnant. Her second child , Laura, ( a successful  actress , but I don't wish to reveal personal details here, as these are friends not celebrities to me),  was born whilst Eleanor was alive............. but prior to this delivery  Christine visited me..... bringing  some perfume..... Magie Noir... To this day I can't cope with  this fragrance as it brings back, too vividly, that visit........ but Christine knows this ........ we have discussed it........ she understands.......

And as you can see, she so does understand ............. how lovely was her response to my request to go to the Crematorium.

Thank you so much Christine..... My love always...... this memory is so important to me and you have made it happen.

Big hugs my dear friend .........


Saturday, 5 January 2013


Sorry , too tired to write much tonight. I'm aware I still need to recall manic fri! Will try to tomorrow. Have spent today doing bits around the  house...

Two big thankyous :

Firstly to Liz who worked overnight last night , and yet still came to take down Christmas tree. I had hoped to have it up for Liza and grand children's visit... But it's been postponed... AND Tree so so droopy! It was sad to look at! So decks in loft. Happy to wait for next year! When they will appear once again. Hope g chn see tree next year and collect pressies !
Under the tv simply isn't the same!

Second enormous big thankyou to Chris D , we were at college together. We have been friends since 1967..... Chris lives in Cambridge and I have just texted her to ask her ,that if she is free tomorrow, could she go to crematorium , as its the anniversary of Eleanor's death... And the book of rememberence will be open at her (Eleanors) , page.
 I would love to go to Cambridge myself. Walk in the gardens... But can't.
So I asked Chris if she will go and take a pic for me... She has , kindly, said that she tomorrow.
Sad , but happy , that a friend is willing to make this memory for me.


Wednesday, 2 January 2013


Resolutions, sometimes do work... they're all about beginning to activate a habit which will do good. I can remember many, many years ago (before it was easy to do it), my resolution was to recycle glass. I took three full years to ensure that this became  a habit ! But I did it!

That was an example of a resolution which was altruistic in nature. More often we make resolutions which are personal aims... loose weight... being a prime example.

But why do we do this each year?
Well , I know why I do it. For me, each new year seems to give an opportunity to "put right" wrongs... too harsh?  It actually does seem to me, that by resolving to do better in one way or another, wipes the slate. You can start again, freedom/release from, past misjudgements. It's almost like being forgiven.

I love the feeling of  even simple  fresh starts. For example, I loved a new exercise book at school, love clean sheets , love showering and putting on fresh clean ironed clothes..... simple examples of fresh starts.

Perhaps I'm one of the few who feel this rather deeply, perhaps thats why New Years Eve seems so important to me.......... and if you find it weird? Well I respond: It simply wouldn't be good for us all to be the same!

So what fresh starts can a woman with MND make?
This year my resolutions are quite selfish and are about being me. Allowing myself to be in charge more and not run by the MND.

I want to live my life as Nikki Rose Woodman , who happens to have MND. NOT the woman with MND called Nikki. During the past year it has often seemed that MND has engulfed me, taking over my personality, like a parasite.

I've been anxious re so many appointments breaking up every day.
So my first revolution  is to give my self time. Time to paint, time to read, time to listen to the radio, time to have a nap if I wish....

It may be selfish, but if I have only limited time left, I need to spend more of it as I wish.
This doesn't mean I don't/won't welcome your visits, (because I value them above all), but it may mean that I need to keep certain days completely free... I hope you will understand.

Other very simple and perhaps daft resolutions:
I'm going to wear mascara each day. This is about taking pride in myself, again, valuing myself. If I look better , I will feel better.
I also will allow myself not to eat crusts, I've never liked them, and always eaten them.
I  will have butter. For years I've used butter substitutes , thinking they are "better for me".
I will wear what-so-ever I want... and if this means PJ's all day... so be it!
and finally, for now.........
I will ask for help, ( this can be difficult), but there are some things I would like too do which, with a friend, will be achieved more quickly... like scanning in old photos.

I reckon  I might need to revise these as time goes on. So I'm going to allow myself the freedom to count each new first of the month as a time to revise ..............
Well I can't wait for Jan 1st  each year can I ? There may not be many left, BUT multiply these by 12 and there are plenty!! YEY!!!


Tuesday, 1 January 2013


Yes tonight's Blog, should have been about resolutions.... well mine anyway.. but I've had a rough day, so tomorrow will be positive re resolutions.......... and comment............... I promise!

Jan 1st 2013: I was awakened at 8:25 by a lady who often rings me by error.. asking for Mark... Usually I'm kindly and try to explain that she has dialled incorrectly. She seems to be elderly and somewhat confused... But I snapped ... then felt ashamed when she hung up. Other friends rang... and I was so tearful ! Ashamed .......... Again!  I did get better as the day wore on,  and so was Ok by the time my girls rang.

The reason I was weepy was that I felt sorry for myself. I had spent last evening by myself. For me, New Years Eve is more important, more important, than Christmas, and always has been... always has been an emotional time when I want to be with friends........ And............ after all,  I'm hoping that last night wont be my last ever Dec 31st.
But it may have been.......... so I was sad....... having never been alone on a Dec 31st in my life !

So just to let you all know: I don't mind being on my own for Christmas.

 BUT I don't ever, ever, EVER! want to spend New Years Eve on my own again.

The next one may be my last, I hope not, but lets face reality, it may well be........

SO.. You are all invited to my house.. RSVP.. Then I can order Fizz and you please bring food...

Please put this in your diaries now.