MY LAST SIXTY HOURS'

So, having seen the urologist on Tuesday, I did agree to having a urethral catheter.... but was very anxious about it.
It seems/ seemed , to me that a supra pubic catheter is a medical intervention, but having one through the urethra diminishes my femininity.
Anyway the Di was cast ! BUT I said I do not expect the district nurses to arrive unannounced. I've had this experience and wanted to guard against it .
SOOOOO.........
What happened ? On Wed morn ,as I was enjoying my shower, who arrived? Yes, the District nurses.
 I was upset and angry.
 I became even more upset and very angry when they wanted to talk to me through the door whilst I showered.
I then became hysterical and shouted, "I'm a person not a piece of meat".... when they persisted in trying to engage me in conversation.
They waited. They apologised for just  arriving, but said they didn't get that message.
I asked them to sit whilst we talked.
 They didn't.
Now, any one in a wheelchair recognises how dis-empowering it is to talk to people who tower above you.........
Normally I cope , but on this occasion my temper and general anxiety was rising.
So into the bedroom we go. Curtains drawn and light (with low energy bulb) put on.(ie not very good light.) They lift my legs on to bed and said to open them up and move them to the side. I said you will need to position them.... they seemed slightly mystified !
So legs in correct position, they said its not very bright.
AND .You so will laugh at this.........
I said the reading light is bright...
 ah said the nurse, there's a torch here ! 

SO, Am I one of the few people to have a catheter inserted by torch light !!!!

They gave me a run down on attaching bags etc.... and, I am bright , but when you are in quite a state of shock you cant be sure if you have taken detail in.

The rest of the day I spent anxiously as I seemed to be sitting on the tube. A carer arrived and said there should be a thigh band.
I rang district nurses. Yes they had one. It would be behind reception at Mytholmroyd medical centre, but centre would be closing for training ( in  Courtesy I ask myself!!) . I had to get there in the next hour.

I rang a friend who, was waiting in for gas man, but none-the-less collected thigh band. Felt more secure.

The first night of sleeping with this thing coincided with a new night-time carer. Now these people have been of variable quality and the three regulars I now have are brill, but a new person??? Anxious !!!!

Anyway Janice arrived and was a world expert on catheters and helped me de-stress and made sure I was comfy.
Even so I woke every hour or so.

Morning carer arrived and all went well.

Last night all fine.I slept.

BUT This morning..... I woke as I was getting texts and heard the beeps. ( The night person leaves at 7:00 and the breakfast person comes between 8:30 and 9:00) ,
I noted the time. 9:20.
I read the texts . Cleaner would not be able to get up.... snow.......... phone call,breakfast  carer not able to get up...snow.
I looked at the bag..... full.

I knew I had to get out of bed and disconnect and get to bathroom to empty.

HOW. What would happen if I stayed there... would it back up? Would my bladder explode !!!!

So, somehow, and I can only put it down to sheer bloody strength of mind and the  fear of remaining where I was ......... I did get off the bed, I did disengage the bag. I did get to bathroom.

I shook. I shook. I shook.

The phone rang, carers would try to get up to me asap. Was I OK? or should they use search and rescue team who have 4X4...( Just think I could have been on one of those rescue programmes the BBC like to put on!!....imagine !!!!!)

Anyway ,eventually, a brave physio man drove carer up. I was made tea and he even went to post office and bought me a packet of cigarettes . (I know after pneumonia, and not smoking for 15 days , you would think I'd know better!.. But sod it !!)

Julie dressed me. I put heating way up and at 11:40 finally had some breakfast..... Wheetos, my grandchilrens favourite !

Today had been full of text conversations.
Carers did get here at tea-time and have assured me a 4X4 is organised for tomorrow. So that is fine.

However, will my carer arrive to sleep tonight?
Who knows.......
Plan B , if she doesn't is that I will sleep in wheelchair........... well I'll be safe.......  I cant get into bed without help........... so that's that !. my last 60hrs.

I wonder what the next day will bring?? Hugs I hope.

HUG ME, I'VE GOT MND

LAST NIGHT I FLEW TO CAIRO

Last Night I Flew to Cairo ......well , in my imagination ! You see ,the hospital bed is so difficult to turn in, so difficult to sit up in ( even with the leg break), that I decided to sleep in the Rise and Recline chair.
And..... when you are seated like that you generally are  on an airplane . I knew I would be in it (Chair) for 7 hrs, and I recall Egypt is about that distance away...well.. ish...   AND..... as Cairo is my favourite city it seemed the obvious place to go.
Unfortunately, I didn't have time to walk round the Pyramids or to go to the Museum .. as at 5:15,  ( after 2 X2 hr sleep slots),  I woke with a serving of tea from my flight attendant... no sorry, carer!
 By 5:30 the inevitable trip to the bathroom was necessary. I decided I would try the proper bed for a few hours , until Marianne , the breakfast carer arrived.
I got onto the bed and with help was positioned in, in  an upright position. But then the panic came as I couldnt breathe, and couldn't move sufficiently to give my chest the expansion it need to access the air.
The carer calmed me and quickly helped me into my wheelchair.
 It was by then  5:50.. and there I have been since .. You see it's so difficult to get on the Rise and Recline chair without support...  and getting into the chair was never a priority when people came... bathroom always was , as getting off the loo is somtimes impossible.... hope when Im better I will once again self manage...

Anyway , today's visits :
Marianne came, and made breakfast.
Man came to write care plan .
Laura was supposed to come but got caught up on business ( and silly me, I missed her txt).
Julia popped in and so did Ginny... I had a coughing fit so they had a chat..
Tea time carer came, leaned on the fridge door, and now it barely closes.

With so many people coming into the kitchen I am going to have to put advice notices up as the potential damage through   lack of sensitivity as to how things may or may not work (Ie people expect things to work as they think.....and don't make the allowance ,that things may not conform !!!).. The kitchen will end up like a Youth Hostel Kitchen... This all sounds trivial, but it is driving mad having to over-see so many people and there apparent lack of attention. They do mean well, but their priorities are not necessarily mine. Anyway,,,,,,, I did have some calories in the form of cool soup with coldish tomatoes on toast !

Karen was to have visited, but there was an accident in Tod and the roads were closed, hence the carer cooking... Im sure she will visit soon.

And very soon carer for the night .. another new person will arrive.

Its stressful having these numbers of different carers through the door.. and I appreciate that this plan has been put together quickly.... and when I think about it the stress of settling in so many people is less than the stress of not having them.

HUG ME , I'VE GOT MND 

AND SO... THE LATEST TOILET SAGA !!

It started on Monday , the day I was 64 plus 1 day !!
I was showered and about 30 mins later I needed the loo... I couldnt get off....... I had to call for my daughter , Eliza, to help me.
How awful for a child to have to help her Mum off a toilet. But Liza was brilliant and just got on with it.
During the afternoon  all was well . But in the evening it happened twice more. Liza to my aid.
We both felt stressed.
On Tuesday morn I realised I had to do something. I got through to Michaela at the the rehab team. I explained the problem. Liza was going home. I would be alone to cope. It was hospice day. M felt I should go and that she would be in touch.
AND... she was ... She contacted Overgate Hospice, and explained the problem. Liz at the hospice spent much of the day with me helping me to come to terms with the situation and explaining the possible help I might get.
Michaela kept in touch.
The answer was emergency respite carers. But ............. there were none !
I was very upset, as I had flagged up the problem of my getting off the toilet about a month ago. The solution to this was to have a riser placed in the chair above to toilet. It should have been ordered. BUT  whilst this had been tried to be ordered there was no urgency attached.. So no riser available as no invoice..  No riser in place.... no planned help !!!!  The OT eventually asked for a manager re the riser order, and it was actioned BUT no funding actioned.....
However, Eventually.............  the order was put in for this riser, but finance not agreed ! So email sent.. Not followed up....
At this point I was furious and weeping. I had alerted the OT to the need, and ,that as I can see how my body is weakening I knew I would have a problem within a few weeks.........
Liz , at hospice was obviously concerned and cared for me whilst I wept.
Fearing a night alone and unable to get off a toilet, I contacted a friend and asked her if she would stay the night. Kindly, she agreed.
I had a phone call from  Liz Thorp to say Calderdale Matron would be consulted. BUT , Sadly there was no capacity for emergency care , as there should be !!!! Would I be safe tonight ?...
Well yes I would, thanks to my organising a friend.

NOW, It may be peculiar to me... BUT... I simply don't wish to mix friendship with care. Care I pay for and friends do things because they love me, and help in emergencies... but generally they are there to enrich each others lives... not to get me off the toilet because the system fails !!!!!!


ANYWAY.....So my friend came in at 6 and I went to the loo. She helped me off. She returned at 8 and we shared a pizza and drank some wine. She helped me off the toilet.
At 6 on Wed morn , I needed the toilet.... I went and as I was rested managed to get off by myself.
I had arranged that my PA/ cleaner , Laura would come in early at 9:30. I felt safe.But soooooooooo let down by the system.

My friend left at 9 . Lara arrived at 9:40. Splash arrived and showered me at 10:45. This was just completed and I needed to rest with a coffee... and yes a cigarette.... When there at the door was Matron Lyn/Lyz Cliff and a social worker.

They said I gather you have a crisis .... I wept. The social worker was kind and understanding and said take your time.......... The Matron..... continued, that the only option available was for me to go into a rehab place at a care home. She added that the max time I would be there was 6 weeks .. ( SIX SODDING WEEKS !!!!).... She felt hat I might get better given this time..... I said that MND didnt work like that. !!!!!!        She felt that with aids I might manage better !!!
AIDS!!!!!!.. I knew that Michaela and Bethan had been working their socks off analysing  aids ...... what I need is the spacers for the chair over the toilet. These should have been organised weeks ago. I had alerted all to the fact that my legs were getting weaker and that I would need more height to get off toilet !!!

RATS RATS,,, It's bad enough having MND, ...........feeling you have to drive your care is bad enough... but then, when it isn't actioned... it's simply shit !!!!!

The question of a care plan came up.... and it has been actioned that I meet with the planner on Monday... However care goes from a social worker assessment... this was done mid Dec... my needs have changed so much since then... they change almost daily....
 don't they understand how MND (ALS) , works ?? 

The other issue was a catheter  My thoughts are, that if someone is in my home in the morning when my bowels open, then the rest of the day is covered by having a catheter.

So Matron was all for fitting one NOW!!!! I said no. I believe I need a supra pubic catheter  She said that could take ages, You have to see a urologist. Absolutely I said, I don't want to go in to this lightly  and need to see a specialist who will explain the pros and cons of each type of catheter.

Matron still said there was no carers available and the care home the best option..

Meanwhile we all knew that Michaela et al would be bringing a commode and slider which may help.

At 3 the team arrived.

We moved the bed , tried the commode, but the energy required was too great to manage..
I reminded the team that I had no problem (well little problem ) getting out of bed, into w, chair and getting to toilet. It was decided that the commode could be in the spare bedroom....

BUT.... NEWS !!!!  An emergency person would be be able to come in between 9 and 9:30 on Thurs and Fri and as of Sat a career will come in twice a day.

SO, now I have to make sure bowels move to order !!! BUT ,if they don't the commode is there.
The only word is SHIT... Literally LOL !!!!

So if the care planning gets sorted I shall employ a morning person, and have a commode for the rest of the day, until a an appointment with a urologist is made.....

What joy.

I've shed many tears...........
all I want is independence and dignity..........
I know I will pay for this .......
but even allowing for this, the backup has failed.......
what more can a person do ????

HUG ME. I'VE GOT MND.

SO WHY WAS I SO UPSET???

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

Why?

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.

HUG ME, I'VE GOT MND.

WHEN WILL WE BE THERE?

You know the phrase.. all children say it... usually just a few minutes after you have left home ..... with hours of travel ahead!!

So , what do you do? Well there's always I-Spy, alphabet games, books, songs, ( Heaven only knows how many times I've sung The Wheels On The Bus!!!!! ), snacks (including Haribo or Smarties!) .

And then (You as a parent) pray to arrive!!!

And , eventually, you do arrive. You (the parent) are shattered, but the youngsters energised and happy. ........




MND is sort of similar... You are on a journey. There are differences..... You aren't praying to arrive...... because that's the end.

But the journey is tedious. Its hard to face each day with a sense of adventure and wonderment. Many days show there are changes in your ability to move.

You need more equipment, more support. (For me my legs are now hopeless,but more frightening, signs of the swallow muscles not performing as they should...........)

With this comes levels of indignity, cost and great sadness.

But you cant give up the journey, you cant give up the effort or you're lost, it's over. 
Its hard to keep on this route. So, So hard. You simply don't know what bend, bump or jolt will be next.

In some ways I wish I knew the map, knew what to expect. Would it make it easier... or would it be so scary that you would just crash the car ??

I think it probably would be too scary to know minute detail.


HUG ME, I'VE GOT MND

SEATING ISSUES

Ok here I am, as always, in my wheel chair. It's OK , but off the shelf and not designed for my body shape... But that apart, I am grateful that at least it has a tilt feature, so my position can be changed. This is really important as if I were to stay in one position I would be in danger of getting pressure sores.... NoT GOOD.

BUT, It would be so much nicer if I could also have a chair to sit in. My rise and recline chair is due to be delivered in Jan... AFTER A 7 MONTH WAIT!!!!!

So last evening I got totally pissed off with this situation. I emailed every MP I could think of who might be involved.
Today I got a call from Craig Whittakers office , asking me for details.

I explained that heath care is exemplary BUT that the support services are not up to speed. Thy need to understand that MND is a speedy , progressive disease. That we, with MND are a minority... only 5000 in the UK. BUT there is no understanding of our needs except by heath professionals who seem to be as frustrated as I am.

OK, the chair wont be delivered faster than Jan, (The producers were always up front on their 8-10 week production time), but the delay with social care  sorting out their committees before the order could be placed,  is not acceptable.

AND

Their tardiness, has impacted on not only the chair but the toilet.

There may well be a Riser suitable to get me off the toilet... its in Central Stores, but I have had to wait two weeks for there to be two people available to deliver and hopefully fit it!

Imagine , you are unbalanced on your legs, weak, and have to transfer to a seat on a seat that doesn't fit!! You could fall at any time!  It's horrid. I fear going to the loo !

So , back to chair issue, I got a call from M.P. Craig W office today. I was given time to explain the issues... for me to state, primarily, that MND is a fast progressive disease.. especially if you have ALS.. which is speedily degenerative.. (Thats what I have) .I stated that I thought that we are a minority, and need to be shown special understanding. Waiting can mean that your body has become less strong and adaptations no longer aare ppropriate.

NB all this equipment is lent, it will go back for someone else... so its not wasted.. it will be used again... but it needs to be available!!!!!

The result seems to be that CW will talk to the appropriate people at Calderdale Council.


Watch this space.   AND


HUG ME, I'VE GOT MND

A SHORT ARTICLE

Two weeks ago I was contacted by the MND Association, asking me if I would like to contribute a short article to put on their website under the "My Experiences Of MND" section.

I agreed to do this. The deadline is tomorrow, and for once in my life I'm ahead of time. It may well be edited on the site as I've written slightly over the 500 word limit. But I thought I would share with you my article. 


                                                         ******************************
Me: Nikki Woodman,  Age 63. Single/divorced,  ( never know which to say!!) .

Mum, Grandma, Retired Headteacher, Artist, Former Hospital Radio Presenter and Samaritan. Diagnosed with MND/ALS one year ago.

So those are the facts. But as you will know, either if you are the one with MND, or if you are reading this as a friend of that dear person... life does take  a significant turn when you hear the diagnosis.

For me it was just before Christmas. I did eventually decide to share the news with Family and friends, but spent 12 days to consider my position and to collect information before I shared. This was a difficult time, but I did then feel in control when, eventually, I shared the news. I wanted to be able to support my family and friends as I knew they would be as alarmed as I was. Giving myself this time allowed me to arm myself with information, buy a book re MND for each of my girls and begin to think, with some clarity, about my attidude to my death. I considered Dignitas.... for a few minutes only.......... And slowly, slowly, as the shock wore off, I was finding that I was considering my attitudes to life not death. Telling people this way helped me, but I understand that it may be slightly unusual.

My Wish List, includes: NO, not a trip on the QE2!!!, but: that kitchen cupboards didn’t have doors, that my feet weren’t always cold, that electric sockets were at waist level, that I could afford a PA who would live quietly in a cupboard, emerging when I needed a cup of tea or a meal or my toes drying !!!  AND I wish social care agencies worked faster, I’ve been waiting for 7mths for a suitable Rise and Recline chair!

Losses: money (don’t go there!!); the ability to travel (a former great love);  use of my legs; limited concentration, so I can’t read;  dignity, (I can’t begin to tell you how many people have pulled me off toilets!!); and biggest of all, my hands are getting weaker, this means painting is becoming exhausting and difficult, but I have booked a gallery for an exhibition next October... it will be a record of painting with MND..

Gains: I have found that I have so many good friends. They help in so many ways: bring meals; loading the dishwasher; sharing wine; taking me to the Theatre; bringing chips in newspaper; visiting, (even though they live miles away); phoning; writing ; texting; and one even sends me really dirty jokes (weird but it’s her way of gee-ing me up)!!), the list is endless.

My OT and Physio, have been brilliant. I take on the challenges of each new bit of equipment I’m presented with: the most useful is the litter picker... (I think it’s called an extra hand, but you know what I mean!).

I’ve realised I’m not greedy, that I enjoy the simplicity of my new life surrounded by the love and care of friends.

It’s sad that I have MND, I Blog about it most days (http://www.nikkiwoodman.blogspot.co.uk  ...HUG ME, I’VE GOT MND...),  

I wouldn’t wish it on anyone, but I guess there are two choices, float or sink. I choose float!

                                                         *********************

OK this is not news to you  regular readers, but I thought it was worth sharing what I did write. 

Not an easy write.. I felt I couldn't say MND is SH** ( which it is) but neither could I say it's a bed of roses. For me its a mix and its about trying to be positive. I hope this is what I have achieved in the article.

HEY !!! By the way the stats now show over 16 thousand hits on this Blog... not bad stats. So next year I want it to go "Viral" !!!! LOL !! Do share with your friend who may be interested. Thanks.

HUG ME, I'VE GOT MND

TODAY SHEFFIELD.

The hospital transport service collected me at 10:50. A lovely young driver named Louise. She is the same age as Chrissie , my youngest daughter. We got on really well, chatting for all the journey, which was beset by traffic hitches! Louise remained calm, and we eventually arrived at Sheffield Hallam Hospital at 1:20. Louise collected a wheelchair and took me in style to the Neuro out-patient ward.
I went in straight away to meet Prof Pam Shaw. She is an expert in MND, specializing in ALS.. What a charming, professional woman. We spent over an hour together with her doing extra checks on my eyes , mouth and all the usual ones on my limbs. I seemed to be quite strong, except when it came to legs and my poor left foot just dangled.!.. no power to even get to a right angle to my leg. It looked so sad, dangling there.
After this assessment she said that with info she already had, and with her thorough examination, she was sorry but confident that the diagnosis of MND, ALS was correct.
You may think that this would be a blow. Strangely it wasn't , I expected it but it is, in a funny way, good to know that is confirmed by a leading expert.
The next appointment I have with her is in about 3 weeks time when I will stay overnight, have a full MRI and an intensive electromyographic test.. I think this is to predict a pattern, to help with research. When the results come through, to discuss if I might participate on the research program.
For my part I don't feel it will improve my life chances, but should help those with MND who come after me. I also feel comforted that there will be a dialogue between Prof Shaw and Halifax and my GP... which may well ensure that I get best treatment. But that is in no way to put Halifax and Dr Mahmood down. He has been splendid and spot on with the care and diagnosis... but it does make me feel better to be observed and helped by two neurologists.


I was going to end on a light note by including some of the pics I have done on the iPad... but the Cloud.. the method by which you share info between computer and iPad seems to be lost. Do I find the cloud? or shall I just leave it and love the sunshine like we had tonight!!! 
I'm too tired to do more tonight, have the car assessment experience tomorrow.. so plenty to keep me going!!!. 
The last few days have been brilliant energy wise.. but have been helped by friends contacting me today, thinking of me, wishing me well ( I guess it was a crunch day) .. and the lovely Rebecca who brought in a tray meal, simply fit for a Queen... Thankyou  Rebecca, the meal was so delicious and so so welcome.

HUG ME, I'VE GOT MND