THE "HUG ME", NEW YEARS HONOURS LIST !

(in no particular order!)

A Posthumous award.. for dear Meggie : Companionship and loyalty.

Bethan : Care , Kindness and finding equipment.

Michaela: Care , Kindness and brilliant massage.

Richard: Offering this bungalow to me,  letting me choose the fitments and colours.

RAC: Being helpful, jolly and fixing the (B*******) van ... 4 times !

Laura: Bringing sparkle and freshness to me, and my house.

Ex Neighbours: Continuing contact and on-going helpfulness.

Ladies Reading Group: For not chucking me out!!!  even when I don’t read the books... and for help, visits and friendship.

Tesco Man: Delivering on time, unpacking and generally being helpful.

Carol at MNDA Connect: Keeping in contact and acting as advocate re Motability

Sheffield and Halifax Hospitals: Care, kindness and support given.

The Whole of HB Rehab Team: Consistency, speedy response and care.

Anne and Tracy: Calderdale Transport drivers: Being jolly.

Jill & K: Over The Top  Wonderful Hugs ..........and Chips !

The Coven: Pink Fizz, food and good times.

Barry :  Daring to be outrider , and general helpfulness.

Sweetie Pie : Lovely chats on the phone.

Matteo: Sparkle and cuteness.

Oliver: Lovely stories we tell each other, and for appreciation of my singing !!!!

Overgate Hospice: Reflexology, jacket potatoes, access to professionals and kindness.

Chris & Christine: Sharing with me, the A-May-Zing Exhibition.

Epernay:  Champagne

And finally, and most importantly, and too many to mention by name......

Family and friends (You know who you are) : visits, meals, txts, phone calls, emails, emptying and loading dishwasher, and dirty jokes (!) ,fun, laughs, and millions of other helps.. too many to mention...  

AND  for sometimes just letting me cry.  Thankyou.

HUG ME, I'VE GOT MND

AND NOW, BACK TO NORMAL!!!

Chrissie , Andy and Oli left at 11:30 today. We had a good time... my only negative, ( and they do know this), was that the TV was on constantly and at a sound level where I could barely hear! (Age ???).  So next visit , pls no cartoons and we watch when I too ,can hear!!!  AND Andy no more threats of leaving tv on The Simpsons ,on mute and hiding the remote... do you want to kill me off???!!!!  You know I'm amazing ,and your son loves chatting to me... so no more threats!!!!! LOL !!!

That aside, we had lovely time with lots of pressies, and lots of visitors. Some of Chrissies school mates called in with their children..... how lovely was that? Jane popped in with Gin and flowers, YEY!!. My carer /pa/cleaner (Laura), came on Christmas eve with two other brill mates and  daughter , to bring me a stocking . WOW what fun !! and so much contact via txt, facebook, twitter and phone. I  sent cards to the four neighbours, with whom I have I spoken a few words, and have been thrilled to get lovely messages back from them all. People are amazing !

Today I went to the dentists as they have bought a ramp... I couldnt get in on my last visit without the help of passing strangers...........  I tried out ramp.. it works. Nick, the dentist was horrified that I had such trouble entering and will do all he can to make things easy. I did ask if he had other patients in w. chairs. He has but they are transfer chairs.......... I did admit that I could be brought in a transfer chair but absolutely didn't want to, as I want to retain my independence for as long as possible. Bless him, he completely understood and accepted this. I think he recognised that this was/ is important to me and might well be important to many others. He is doing his very best to make the premises accessible... in some part thanks to me.

As I got back from Tod, the phone rang. It was the woman who co-ordinates the health environment... she had had my email forwarded to her from Craig Whittaker MP re my issues re tardy response to need , well my needs, with MND........ watch this space !

Liz rang and asked if she and her dad could pop round... YES  was the answer. Liz is a great friend but her dad is such a real gent and as he lives in London I rarely see him.
In advance of their arrival, I put on the fire and went to put on the wall lights. POP!! Lights fused. Keys and torch in hand, I went to go to circuit breaker in garage( first time )......... on my way I noticed that green van back exit door not quite closed. Three goes... up and down, up and down, up and down ...... still not closed.

OK one task at a time.  Circuit breaker... sorted ! YEY!!!
Back to (B) car...... up down , up down........ no, a definite fault.

Liz and Ralph arrived. Decided glass of wine, then RAC......

Called RAC at 6:30... they arrived at 6:55........ fault fixed. Some WD40 as the door was jamming fixed it. AHHHHHHHH ! I said, sorry. I should have done that myself..... NO said kind RAC man. You need a track record of the faults on this car. Do ring us for any fault.
Well that salves my conscience ! And , yes , I will ring again.
RAC are brill, the (B) car isn't !!! Fourth visit from RAC.

So as you see, things are back to normal. I'm here Blogging, wind is howling and there is red wine and also a pack of cigarettes to my left!!


HUG ME, I'VE GOT MND

ELEANOR ROSE VICCARS

Today my daughter Eleanor would have been 32.
Sadly she died after only 10 days.

I want to write about her birth and death, as its a part of my life. It's always been my intention to leave a record of my thoughts and feelings as a person with MND, but also, to leave information about me for my family to have as a record of events in my life. 
So forgive me, this account has very little to do with MND, except that it did happen to me.


My baby was due on Christmas eve. I had felt there was something wrong all through the pregnancy, this baby was to have been baby number two. I had felt Eliza, my first baby, moving nice and early in the pregnancy... well it was, according to THE pregnancy book at that time, (1977) ,Gordon Bourne.

I was so anxious, re pregnancy two, that I had asked my consultant Mr Williams at Cambridge, for an amnio... it was early days for this test, and the consultant dismissed my anxieties, "You have had one perfectly normal child. An Amnio is simply not necessary!" ........... Remember, Scans weren't done as the norm at this time.

Christmas morning,  my waters broke. I struggled to roast the turkey and be jolly for Eliza. But I did feel rough on and off all day.

I noticed meconium on Boxing day afternoon, and we went to Mill Road Cambridge. My friend Marjorie, whose birthday it was, was took over Eliza. I knew Liza would be well taken care of. I had much to thank Marjorie for during the next two weeks especially....... and for a long time afterwards.

A drip was set up, but no action ! Ray went back to our house. He returned early in the morning . I went into the delivery room about 11:00. I found it hot. A window was opened and there, ouside the window, was one lone pink rose.

Eleanor was born about lunchtime. The room which had just a midwife prior to the delivery, filled. She must have pressed a button. Drs and  other nurses all rushed in. Someone asked the Dr a question. Her respose was " I dont know. I cant  deal with it when I've got a baby like this".

All this time no-one spoke to me . I kept saying what is it, boy or girl... boy or girl... over and over again. Eventually I was told my baby was a little girl.

For a few micro seconds, I was thrilled.
But, almost immediately ,a fear  swept over me. Things weren't anyways near normal......

Sister Zizler came to me ,holding my swaddled daughter. She said,  I'm sorry your baby wont live very long.

My response: just 10 or 12 years ?... NO... 10 or 12 months ?... NO... 10 or 12 weeks...NO...  

Ten or twelve days they said.
She had spinal bifida and hydrocephaly.

I went to a private room... WARD 4... That night Ray came back with a picnic sent from Marjorie... tit bits of tasty food and a gin and tonic in a tonic bottle.

Mr Williams came in.. I'm sorry he said... I wasn't to know.
I explained that I wasn't a litigious sort of person... but suggested he should listen to people in future.. as I had always known there was something wrong
..... and then told him to leave.

The next day, I went to see Eleanor.She was in a side ward of the SCBU. Some nurses greeted us. Some avoided eye contact. Apparently, as she was going to be allowed to die, it was a conscience decision on their part.
Ray and I met with doctors.... Eleanor had been scanned. Her brain was extremely damaged. She would not be able to see, hear, talk walk and would be in considerable pain and needing frequent operations if she was to live, in short, no quality of life......
Whilst it was a decision to allow her to die, the medical staff did consult with us... but I felt this was a token and anyway having the full information, we were in accord with them.

So Eleanor was christened. We stayed with her,..... each day from lunch time to late evening....... Remember, we had Liza to care for too and we didn't want her to feel neglected,  uncared for, unloved or damaged in any way.
....... Each night we drank bacardi, bought from the off license opposite the maternity unit on Mill Rd.

I stayed at the hospital one night , all night. Eleanor was failing. I was told to hold her still if she should stop breathing.
That night was the night the Yorkshire Ripper was caught. Radios were on day and night in SCBU... and there were news flashes all night.

Eleanor didn't die that night. She died on Jan 6th.

On Jan 6th, I was at home in the shower, when I had a tremendous contraction pain... only one... very fierce. Five minutes later, the phone rang. Ray came to tell me Eleanor Rose had died.

Some yrs later the Mill RD Maternity Unit was replaced by a new maternity unit , "The Rosie", geographically near Addenbrookes.

Ray and I got  permission to dig up the pink rose. It was planted in our garden in St Neots.

Strange how roses have followed me. My middle name is Rose, Eleanor was planned to be Eleanor Rose, we used Rose again for Christina Rose and should Christina have a daughter she thinks they will give it the name Rose as a middle name.

Roses are pink for me... and always will be, as a reminder of my dear  baby.

Eleanor was cremated in Cambridge. In the Book of Remembrance we put... Loved Always... and she will be.


HUG ME, I'VE GOT MND

"MULLED" GAMMON !

So it's Boxing day and, when I just viewed stats I note I have now had 17,070 hits !!!... and my first year of Blogging is not yet over! Yey!!!

I do hope that some of you are finding this funny/ interesting/ as a way of seeing what I'm up to and perhaps, even helpful ,if you too have MND.

Only one moan, I'll get it over with.
Did a sharp turn in wheelchair and caught hand in door... my thumb really hurts... NO I mean REALLY hurts !!!   Ibuprofen  and lots of sympathy please !!!

I've got the former . So its just the latter!!!!

My son in law, who cooked all day yesterday, is resting ,so I'm in the kitchen! Chrissie is being my sous chef... getting the right bits out of difficult cupboards , finding bits etc. and joggling baby Oliver !

Today its Gammon. I had planned to cook it in apple juice , on top of the hob. But the induction hob is having a few moments... it simply beeps and won't turn on... maybe the wrong sort of pan?? Or maybe it too, needs a rest!!

So Gammon in oven poaching... but meat thermometer doesn't seem to be reacting... do they work in steam????

Next issue.. couldnt find cloves... so I've added a sachet of mulled wine spice!!!   In a few minutes I plan to get it (Meat), out,  cover in mustard and treacle, then bake to give a crust.
But its not English mustard, couldn't find that, and it is sugar, not molasses! Ho Hum !!!!

Watch this space, we could be eating cheese and crackers tonight !!!

Well life with MND is full of adaptation,  but I didn't ever think it would prepare me for cooking in mulled wine spice!!!

BUT , I do have a secret supply of wine spice, so those cheese and bics will be much enhanced!!!

Especially for us select few with MND, Do enjoy your boxing day, and lets keep  adapting our lives to make the very best of each moment.

HUG ME , I'VE GOT MND

THE GIFT/S OF CHRISTMAS

This morning Laura and I were talking about the fun of Christmas stockings.

I loved my stocking. I can remember waking in the middle of the night, feeling for it... checking if HE had been.. Never opening it, just thrilled I had it to look forward to.

I opened my stocking in bed with mum and dad. And each year, though there were new gifts, there were some constants..... A sixpence wrapped in foil, tickets for a panto,  and , of course, an orange in the toe!

In our family I wasn't the only one whom Father Christmas visited. Mum and Dad got stockings too.

It was funny , as they got older, 70+ (!) , Father Christmas seemed to raid Boots ! Steradent tabs, Gaviscon, Asprin, toothpaste........ all seemed to bulge out of their stockings !!     BUT they also had at least one "good" present... for dad it was usually a Meerschaum pipe... he was always thrilled. Mum always got a sparkly broach... dad liked glitz ( its in the genes!!) , and a proper gift too.. perfume, fine stockings or similar.

We would sit in bed, taking it in turns to open a wrapped item each.... I loved it.

When my children were little, they of course had stockings and the tradition carried on. I used to tell them that Father Christmas brought the stockings, but people gave them presents..... in that way they would have someone to thank... maybe even write thankyou letters too..... but this did get a battle!!!! 

Im sure we've all had Christmases that have been less than perfect, perhaps very sad, for whatever reason. But today is not a day to think about those. Today, I hope, is a happy day for you all... or if you are reading this after the 25th, (Which I suspect you are!!!),  I hope you have happy memories of Christmas day 2012.

And as for me , no Im not so sad as to write this on Christmas day! It's Christmas eve now and I'm writing with a glass of Sloe Gin to my left! Im waiting for Chrissie Andy and baby Oli to arrive, and Im sure this will herald a great time for us all. A new baby , and at Christmas.

And that brings me on to the joy of Christmas. Whatever your beliefs, it is a time when many people think of the birth of the Christ child. For those that don't have this belief, it still must be the gift of Christmas, that we think of the birth of children. For me my girls,( Eliza, Eleanor and Christina), and also my beloved grandchildren,( Caterina (Sweetie Pie), Matteo and Oliver).

Little ones are our future, they are amazing , and should be cherished. 

Let us hope and pray that our world will soon treat all our babies,  with kindness, care and  love. 


HUG ME, I'VE GOT MND

OH HOLY NIGHT.... MY STORY

When I was 10  I was at school at St Stephens Episcopal Day School, Coconut Grove Miami. I had    a good singing voice.
Perhaps no better than many but, I was happy to sing to an audience! Show off I hear you say!!! 
In My class in Mrs Fresh s ( a Cuban exile ) was George Heiner Jr. He ,too, had a brilliant voice and we were paired to sing together many times.
One of these times was a school concert at the beginning of term when we sang "Getting to Know You".
The last time he sang was the day I lef,t and Mrs Fresh asked him to sing as a tribute to me..George sang "You'll Never Walk Alone. " It was very emotional even for a 10 yr old. and inmy memory even more emotion comes forth.

Back to "O Holy Night". The Christmas I was 10 , George and I were asked to sing on TV. I think it was channel 9 , the Education Channel. Well, you can imagine how thrilled I was. The TV programme was to be live and was 2 days before the end of term.

Now, it must be explained that teachers were not paid well, and my family had little money. I was due to fly Bahamas Air, back to be with Mum and Dad on Inagua for Christmas,  the day after the TV show. 

BUT I was offered a  "lift" in a plane belonging to Penny and Bart Reed... the day before the TV show.(They had a private plane which Bart flew back and forth from Miami to Inagua , he was based at both places working for Morton Salt).

My parents made me have the lift.

I was so sad. I so wanted to be on TV. I so wanted to sing. I so wanted to sing with George... we had practised and practised........... and yes the carol was O Holy Night........

So now when I hear it memories flood back.

Sadly there is a post script to this:

Penny and Bart had three children Stephanie (six yrs older than me), Randolph ... known as Randy (my age ), and Vicky... 5 yrs younger.
Well a year after  we got back to England (1961) ... Penny, Bart and Vicky did the same trip..... They were lost... no sightings of plane wreckage.... it was assumed that they were lost in the Bermuda Triangle.........


I include now O Holy Night, not sung by George and I, but by Charlotte Church and Placido Domingo.

Happy Christmas.

HUG ME, I'VE GOT MND

FOR MY GRANDCHILDREN

I made this video... 12 takes !!          My grandchildren can now  hear me read The Night Before Christmas , each year.

My mum used to read it to me, and when she was a grandma she bought a beautifully illustrated book, version for Eliza. I wonder where that is now Liza ?

Anyway the sad bit is, that it might be, that I will speak with a slur, or even not be able to speak next Christmas.

So this video is here in perpetuity.

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

CARE FUNDING

In June I had a care assessment . The result was, that it was thought that I needed £163 care per week. Of this, (because of my pension income) I would pay £150.
At this point I was still walking, with a stick, around the furniture, and I was happy with  my outlay of just £25 per week for a cleaner. I therefore didn't get involved with direct payments.

Now, December, my needs are great, and I decided that as I am already spending £100 per week on care myself, that it would be an appropriate time to have another assessment. @Overgate hospice social worker did the referral.
Lydia , a +Calderdale MBC   social worker ,came to do this assessment 2 weeks ago.
The system is that you answer questions about your need. This info is fed into a computer as a set of numbers, and  produces an amount , which is the cost of your care needs under direct payments.

OK, I realise , that I would be paying the major part of this , but as my needs are now so great, I feel I need considerably more help.

I am having great difficulty getting in and out of bed, turning over in bed, cooking, eating, if I have got a meal (  too tired to eat), showering, dressing..............   
I am doing these things,but at great great cost. I have no energy to do any of the fun things that make life worth living. Eg painting , going out, or even reading.... I'm simply too worn out to concentrate on doing anything more than survive. ( That's why my Blog has been less frequent).

So , last Thursday, I received a call from Lydia. The results... £112 per week. A reduction of £51 per week !

Apparently Calderdale Council, have changed the weightings !!

I realise that there are cuts, but this is simply outrageous!

I contacted my care team, OT/ Physio, and they were stunned. It has been arranged that a person from the "Support Planning" team will visit, and do another assessment.....

Watch this space!

This disregard of my considerable need has really upset me. I do have a long term diagnosis of clinical depression... I am feeling very very low, that the quality of my life is to be at the behest of some computer setting. It's not a good feeling. And , damn it, I'm terminally ill!

I want to be me, Nikki ,who happens to have MND... not an MND person called Nikki.

It seems a very sad reflection on our society , that a terminally ill person can't hang on to the essence of their being. Without me being me, what else is there.

(Remember that I know I will be paying most of these costs myself, but a little help would be great, and the acknowledgement that I have great need , is even more important to me).

I hope this all makes sense.

HUG ME, I'VE GOT MND

WRAPPING

Last year, having just having been diagnosed , I lacked energy enthusiasm for packing parcels... so I made the effort and packed up gifts in tin foil.  Not a great success!!

This year, the way through,  was to buy Christmas bags.... but .....  I didn't reckon with Laura, my cleaner/carer /PA... and Christmas fairy!!!! She loves packing and was happy to help with this task.. onerous to me... but a great pleasure to her... 

WELL, my parcels have never been so well wrapped or so well bowed and sparkled!!

AMAZING !

HUG ME, I'VE GOT MND

CHRISTMAS AT OVERGATE DAY CARE

Tuesday, and my day for Day Care at Overgate Hospice. What a busy day!!!
It started with a coffee. Chat to my mate Jackie and then on to making truffles. Then a head massage... yey!!! . The complimentary care is soooo good.  
Time for a bit of nicotine ( discreetly), Then a sherry , A  brill Christmas dinner, ( lovely veg, turkey and a gravy made especially for me, as I cant have yeast extract. How kind of the cooks to think of that !)
 During dessert I finished a glass of wine and Father Christmas arrive!!. Clearly we all had the same present... so no-one opened.. we will thus all get a surprise on Dec25th!  

I then had more coffee and a chat with the social worker re my assessment for care package. 
A chat with a nurse re how I was doing...and the understanding that I could contact , anytime.

1:30.....Time for the carol service. Not a long service, but very pleasant/uplifting. I read a lesson.. well I thunk. But was sad to find that I couldn't sing. My voice was not working after a line of a carol... this made me  sad... a new problem revealing itself... but at least I could read well. 

At 2:00, I went to all my friends and wished them a happy time. . Unable to hug them, as I can't get up,  I held hands..

........... but one dear lady managed to stand and hug me. I felt her meagre body beneath the smart dress, her oxygen pulled as she stood. How gracious, how loving was thus gesture. 

I was touched by the whole day.

HUG ME, I'VE GOT MND

A FEW DIFFICULT DAYS

Yes, I've had a few difficult days. Much to do with dignity and , as ever , toilets!

BUT!! I'm coming through.

However, too tired to write much . But I thought I would share this music.

Ok its the music from the KFC Krushems ad. I did try Krushems once... never again ! But the ad is brill and the music even better.

ENJOY !

HUG ME , I'VE GOT MND

HEADLINES

MARK ROTHKO...   On the news today a guy who had damaged a Rothko painting was given a prison sentence.
I saw these Rothko paintings. The are beautiful and gave me the feeling of peace and tranquillity that they were aimed to.
How could he do it. These images are sooooooo wonderful.

PIZZA I've always had a prob cooking pizza, the edges burn. BUT, tonight, for the first time ever , I did it. YEY!!! Perfectly cooked Pizza and wonderful salad.

WONDERFUL SALAD. Do try this . Chop an orange. Add salad vegetables, especially celery and essentially onions. The acid in the orange sort of pickles the onion.. finally sea salt and a small amount of Olive Oil... simple change from vinegar... but so much better... YEY!!

ASSESSMENT. Social services came along today. I asked at what point does health-care take over..  not if you have difficulty showering, not if you have difficulty cooking a meal, not if you are too tired to eat following making a meal, not if you have a problem dressing, not if you have pain in bed because you don't turn over, not even if you have a feeding tube... but only if your feeding tube is troublesome !!!
I await assessment results.
I know I need more help... but what will the assessment say.
The max you have to pay is £220 per week.. with my rent that's £1480 per month... !! EXTRA! Lets not go there.

OT. Contacted me re visit for toilet adaptation due tomorrow... it might not work.. be warned!!! After waiting  two weeks plus 1 day, because there were not two people available to transport possible toilet riser.. I'm totally angered by Calderdale stores team.... I await tomorrow !!

PROF SHAW (MND world expert/ wonderful, amazing woman): Went to Sheffield yesterday. Prof Shaw incensed by my toilet predicament. Will write letter if not fixed. BECAUSE : If a person with MND breaks a bone, the disease will undoubtedly advance....
I am sooooooooooooo at risk at falling off toilet.. and never mind the indignity !! So watch this space.

GETTING BETTER :Having been ill for a week with stomach problems, I'm now nearly better, still a little pain..
BUT I am so in FIGHTING form !

DO WATCH THIS SPACE.... THE MND CHARTER SAYS EQUIPMENT SHOULD BE PROVIDED APPROPRIATELY AND IN REASONABLE TIME............  Toilet... essential !!! Chair.....essential!!.........Care........ essential...... ! so please do watch this space.

Contact your MP. I have. Make them aware. MND is special because it is progressively degenerating, time is of the essence..... we cant wait for equipment, we need it NOW !!!!!!!!!!! Please help, not just me, but anyone with this horrid disease.


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

I'VE BEEN THINKING...

Christmas approaches. There is so much hustle, bustle, potential excitement, cost, planning........

Is it worth it?
For some maybe. Maybe it truly does make them happy. For many they will be left disappointed as the expectation of a wondrous time simply isn't delivered.

As someone who is terminally ill, I find I spend a lot of time thinking. Thinking what would I do if I could? Where would I live? Who would I like to see? What gifts would I like for Christmas? What would be a real treat? etc etc.

My mind wandered back to the Macbeth quote :



Life's but a walking shadow, a poor player
That struts and frets his hour upon the stage
And then is heard no more. It is a tale
Told by an idiot, full of sound and fury
Signifying nothing. — Macbeth (Act 5, Scene 5,







Does life signify nothing? It it all simply a waste? Do we make too much fuss? Are we too self centred?




NO. I don't believe life has to be like this this. I am sure we can all make a mark. Leave the world a little better for our having been on it. We could do ths through voluntary work , through simple ways like not ever dropping litter! etc But I believe the major way to leave a mark, is through kindness and love.




I have sometimes thought... "Oh I would like to go to (wherever), poor me I cant get there....""




But then I think again in the quite calm moments.........




Actually I'm happy. I'm warm , I have food, I have friends and family who are so, so kind , caring and loving.




I know Im at my happiest when things are simple.




So yes Im OK. It doesn't mean I would accept an all expenses paid trip to the Bahamas.!!! LOL !!.. but I realise that I don't yearn to do this any more. What will be will be and I am content to live a simple life.




Simplicity is refreshing , it takes away angst, angst that I can feel/see in many people.







HUG ME, I'VE GOT MND

AMAZING !

Here at last is the music I had transferred from a 78 to CD.
The 78 was recorded by my dad, Cecil Woodman, in 1948. Dad plays the piano and sings with his combo partner Bert White. They were known as White and Woodman.Both from The Royal Forest of Dean, Gloucestershire.

From the date on the record, April 1948 , I have worked out that this was about when I was concieved... How amazing to hear this so many years after my dads death. I was so moved and excited to get the CD copy.

The way Blogger works is that you can't just seem to upload music files ( well I couldn't anyway), so I had to make a video and upload to You Tube.

Sadly until one of my daughters visit I cant find an appropriate picture of Dad.. so just listen and remember the picture was taken 10yrs after the recording !

Enjoy !

HUG ME, I'VE GOT MND

VERY SHORT MOAN !

I've not written for a few days as I have had stomach pains, of unknown origin.

BUT, I've been well looked after by Doctors and friends who will be coming in over the weekend to make evening meals.

Im slowly getting back to normal. It is a salutary tale.. even a simple illness that you would normally shrug off without MND

... When you have MND it can be really bad.

So rest and good simple food is the recipe for my return to normal.

But we wont go into what is my normal . LOL!!!

HUG ME, I'VE GOT MND.

RAGE, RAGE ! AGAINST THE MND !!!

SORRY YET MORE MOANS.... WILL GET BACK TO SOME SORT OF BALANCE SOON....

I do so hope...........pray!!!!

So the thoughts/ happenings of today........ as bullet points !!!

• Woke up, knew I had to be at Hx Hosp for 10:15... Knew I simply could not do it. So I phoned and cancelled.                                                                                                     It was a Spirometry test/check at cardiology. They were unbelievingly understanding and yet I feel such guilt at wasting NHS time......... I've now got it on my outpatient notes that I really can only manage afternoon appointments... unless life or death.                              Spirometry will test my breathing capacity.                                                                          BUT as I still talk in long sentences,  I know there is not any change... and if there is, it is very small.                                                                                                               When there is change I will need an overnight breathing apparatus and then will need to consider the op for a feeding tube.. PEG... but that is not for this week!!!...                          I have been helped by having an appointment at 1:00 on Dec27th,,so much better for me. Thankyou.
• Laura came and wheeled me in for a shower.Afterwards, I thought it would be a good time to make another Video... of me getting on my shoes and socks....... Video made.                      And can I publish it here!!!??? Can I heck as like!!                                                          Why did it work other times ?? Heaven only knows.                                                                I have spent HOURS fiddling with settings.. heaven only know who may maybe able access info on my computer!!!                                                                                                                         Will have to re film... sorry Laura.
• The pile of paper on my table is NOT decreasing ! It's full of documents I need to read carefully... and I have been putting this off for so long !!!                                                    I so need to get in control of this, it is driving me MAD. I want to SHOUT !!!! Why WHY cant I get a grip !!! ???
• Then at 4:00, B arrived , my lovely OT. She came with missives re toilet... a shower chair to wheel on to Closomat... No Bidet function then available ( I paid £2500 for this privilege) and or a riser which might work... but then no drying facility from Closomat.... THIS SIMPLY SHOULD NOT BE !!!! I have MND. I don't need all this extra crap !!!

And you know, all I wanted was a calm day, a day when I could paint , in a warm house with no stress. 

It's now 8:40 and so-far today I have had one bowl of cereal, many cigarettes, 5 cups of coffee and two GnTs... Fortunately A has made me some freezer meals.. so Chicken Curry here I come. 

BUT............. Inside I'm screaming. It should not be like this. MND is horrid, but OK I accept it, that's what I've got.. 

but all the rest of the sodding crap... It's not fair.!!

HUG ME, I'VE GOT MND

• 
  

TOILET.. AGAIN.. SORRY , I KNOW !!!!

The start of this latest saga started on Thursday evening, but has been too upsetting to write about until now.

On Thursday last, I was very tired , but my friend E arrived to take me to HB to see the Valley Of Lights... ( I actually saw many HB bottoms !!!!!!! and got v v cold... , but that apart it was amazing for the three valley towns: Mytholmroyd, Hebden Bridge and Tod... YEY!!!) .

So E arrived and I went to the loo whilst she got the transfer chair ready. Then ... I found I simply couldn't get off!

I have been having trouble for a few weeks, but have managed to get off by rocking back and forth, and managing.. ( sorry, no video available!!!). So E helped me off. We then put on the seat that raises it by 3". The only two problems are that it means the bidet function no longer works and as it doesn't fit fully.. ie it is so unstable it is dangerous...

So I coped Thurs night.

On Friday I rang Total Hygiene and asked for 2" plinth to be fitted.. making a total (max) height of 4" raise.....

Fortuitously, the MNDA rang me to ask re the car. they have been acting as advocates for me re car. It was good that I could report that all was now well and that my confidence had returned. I then said that I had toilet height problems and my solution was to get the extra plinth  (at a cost of £295)...

WHOA!!!!! was the response.. this is a solution for only a while. The proper solution is to have a seat raiser.. After discussion the MNDA decided that, as I was a special case (ie living alone), they would give some financial support towards special seat... but couldn't say how much.

I rang my OT and said I needed to talk urgently. I had by now found out that the seat would cost£3300... yes that is correct.

My OT organised a temporary help solution, Minor Works will pay for the 2" plinth (£295)............

AND the dept would consider paying for seat raiser... BUT I was warned that the cttes move exceedingly slow   viz the Rise and Recline Chair... probably will be 7months before it is delivered !!!

So Here I am... Unsafe sitting on the loo.. hopefully it will be made safe in the next week??? and then a bill of £3300.. because my need will be before the cttee decides if it can authorise...

I could have a hoist !!! But another person is needed to operate!!

I could pay for someone to operate it. BUT !!! Who does go to the loo according to a timetable !!!

So the music tonight is a choice based on it's title...

Katy Clarkson...

HUG ME, I'VE GOT MND

JOY PEACE AND HAPPINESS

I finally confirmed my Christmas card order yesterday and the reading inside is "Joy Peace and Happiness".

So what are my recent events under these three headings?  ... today is not a day to be negative... the Christmas season starts for me on Dec 1st !

JOY
Amazingly joyous happening this week. I had found some recordings my dad had made . One was dated 1948 and the two other 78's earlier than that date. I know because the discs were of the type with a metal interior. Eventually. I sent them off to (hopefully ) be transferred to a CD. I didn't really hold out much hope for this, as the actual records were in a terrible state. One covered in mould! Dear Ewan, had sought out a company who had suitable High Tec equipment to do the job.  This week I received the CD. This is my Dad singing "In the Good Old Days" with his singing partner Bert White...  Dad sings and plays the piano. This is the April 1948 recording... strangely this must have been about the time I was conceived.

Ok at this point I tried to add music track... and couldnt !  Im writing this 2 hrs after starting Blog and It seems if you want to add just a music track you have to make a You Tube vid......




So you will have to wait to hear my moments of Joy.

Sorry

PEACE... Well this has been such a hectic week. I will Blog soon about the toilet problems of Thurs/ Fri   . But not now . Simply to say I'm looking forward to Sunday, Painting and resting..., 

Peace for me midst this turmoil... I can cope with MND but its the Shit that goes with it that is soooooo hard. Nothing is straightforward and simple

.. but tomorrow, the anniversary date of my diagnosis will be peaceful

........ I so need space, and tomorrow I claim it for me

... Nikki Rose Woodman,

HAPPINESS. Today I was a real person. I held a tin for Samaritans outside Riggs Garden Centre. I did something helpful and purposeful. AND I met many friends too. Some didnt know about the MND... But I'm glad they do now and have seen me.

All this has made me sooooooo happy.After our duty. .....I went inside and bought a tree and some decorations. My grandchildren visit next weekend and I am so looking forward to tree decorating with them.

HUG ME, I'VE GOT MND