WHAT A TWERP ! !

Ok to get the significance of the title over... I'm a twerp because I turned up at hospital, neurology department, 24 hrs early!!

In order to keep appointment now I have had to change Tesco-mans arrival, change the time when I am meeting Liz, to peruse curtains, and most importantly will have to manage on my own , as today John was pushing me.  So watch this space for more porter related incidents... or keep your fingers crossed for me, that all goes well!

Talking of going well a few splendid things today. Sue and Pip called in with Fish and chips, yum, en route to St Neots. Sue and I taught together in Little Paxton in 1974. So lovely to spend even a short time with them,,,,, and they brought fresh picked dahlias and Thornton's chocs! YEY!

The next news was that the part for my car has arrived from Italy, just prior to the factory closing for a month!!! How cross would I be had this happened? BUT all is well. I will have it all fitted next Monday, collecting on WED. Think I aught to invest in P signs... I will be driving from wheelchair and using my hands only. How tricky will this be!! 
But Im sure I'll eventually manage. 
The issue I have is that I need to be confident enough to drive to Northampton when baby Scannell arrives. Due Sept 6th... and with the house move planned for Aug 30th I'm up to my ears, when will I get motorway practice time? But Nothing will keep me from seeing my new grandchild when s/he is new and lovely and wrinkly!

Next good news was that my sofa can be delivered on Aug 24th. The carpets will be down then, and I shall organise dishwasher and freezer to arrive that day too. 

So all going well, I do have an A4twitter .com sheet of people to ring/contact though... the usual stuff like council tax,  gas and electricity etc... telephone in and running and internet set up for 22nd... so all going well.

I do need rest and to keep calm though as anxiety of all this and MND causes my heart to race sometimes, and its very frightening.

Lots of people are helping pack and move stuff, I'm so grateful.

HUG ME, I'VE GOT MND.

25 DAILY ADUSTMENTS

I thought it maybe interesting for you to have a list of the adjustments I make to manage  a "normal" life:

• I usually wear slipper boots with thermal socks. My feet are always cold.
• When I do wear shoes, they have to be light enough for me to lift, yet attached with Velcro fastenings or similar to stay on. Clarks wave sports shoes seem to be the best option.
• I wear a Velcro support to keep my foot in place , otherwise , as it droops so much I fall over it.
• I have to have strategies in place to allow me to get off the floor. This includes a low stool,cushion and chair downstairs and a blow-up apparatus in the bedroom.
• I let guests make the coffee of tea.. Lifting a full kettle is hard and I have nearly scalded myself many times.
• My hands aren't strong. I drop things , especially difficult when I put coffee into a mug.
• I have difficulty getting the wheelchair in the right position to open the door of the dishwasher to unload it.
• I have no wheelchair upstairs, so have to support my body on a basin or work surface, to have 2 hands free to empty washing machine, or similar.
• I haven't worn contact leanses for months, my hands cant stay in the air long enough to mnanage.
• I cant use a large towel,too heavy.
• I cant put washing on a line or manage wet washing onto a clothes airer , too heavy, so I spend a fortune on using a dryer.
• I cook but then am too tired to eat on occasion.
• I'm frequently hungry , so have lots of small meals.
• My stomach is bloated as I sit so much.
• The stair lift takes 32 seconds per journey, and that doesnt include getting off.
• I have to shop for clothes on-line, a changing room difficult and too exhausting.So I try on at home. And like today the garment didn't fit. So now I, somehow, have to return it
• After a shower I'm so tired I have to rest for 20mins in a chair.
• Sometimes at bedtime,(like last night), I fall asleep still fully clothed, too exhaused to undress.
• Opening tins , using a corkscrew have too be done sitting. The action of standing and turning anything sends me sideways onto the floor. As I'm in the wheel chair I  frequently spill bits of the content on me.
• I have difficulty giving Meggie fresh water, have to top her bowl up from a cup.. The action of placing a bowl on the floor, means I always spill it.
• I cant pick up the post, I use a litter picker.
• I couldn't hoover would fall flat on my face behind it, or use dustpan and brush, too low down. 
• Cant reach the top shelf of the fridge, or kitchen cupboards . High enough that  I would  need to  stretch which causes imbalance
• Heating costs a fortune as I am frequently very cold, yes even in August, that I have to put it on.

25 things that happened today, there will be many more, but these are the obvious ones.

This isn't a moan. I just thought it would be of interest to you to know how much MND affects normal everyday things that I took for granted. 

HUG ME, I'VE GOT MND.

THE WIND CHANGED DIRECTION !

Just noted I've had  over 9000 hits since I started to Blog!WOW!!!

Thank you to all who "hit " on me!!

Apologies to anyone who tried to see a new Blog in the last few days.. there hasntn been one, as life has been too depressing and negative to write about.

BUT

Today started negatively as all the problems I have were still not moving on....

However at 10 ,Mike from Valley Kitchens rang. My fridge freezer will be put in tomorrow! YEY!! I cant tell you how trying it has been to manage with out a fridge for the last 4 weeks!

Liz rang and offered to cook a roast pork meal (yum) on Sunday night, then watch closing Olympic ceremony together... what fun!!

Pip and Sue emailed to say they are passing through Tod on Wed, on the way back to St Neots, can they call in with fish and chips... YEY!!!

Richard responded to email.I can put stuff in kitchen ant bungalow and also store stuff in garage.. YEY!! John and Elsa to help tomorrow afternoon! YEY!!!

Sandra , cleaner, helped sort kitchen stuff and packed into car. YEY!!!
twitter.com
Martin, hairdresser, popped in for a coffee. He loaded yet more boxes into car.. YEY!!!

The only negative, is that the part necessary for my car is in Italy. It is ordered and paid for but will take 7-10 days to arrive. ( I have a very jaundiced view of these sort of promises, experience suggests it may well be 2 weeks). I so want to be able to drive to go and do stuff like choose curtains. But more importantly driving from A wheel chair with hand controls will take some getting used to... and I need to be confident for my drive to Northampton.. Chrissie's baby due Sept 6th... but babies can be early!!

So all in all, things are getting better. Due mainly to the help from friends. I will never ever be able to thank you all enough.

HUG ME, I'VE GOT MND

GETTING THERE!

Have had a very productive day with my friend Jean, doing mega sort in spare bedroom where my packing boxes are. 
Am able to put things in loft and kitchen at new home v soon. No need to wait for removal people... this will mean less sorting when I do move..Sooooo v helpful.
Will be sending out email soon to all those who have offered help with packing... but I'll need help with unpacking too! 
My friends are sooo wonderful. I simply couldn't do all this without you!
Thanks in advance!!! HUGS xxx

HUG ME, I'VE GOT MND

COMING TOGETHER,

Today I heard I should be moving to my bungalow on sept 1st! Whilst I don't want to leave my lovely Edwardian terrace with it lovely old pine doors.. AND I have had to put it on the market, to pay for adaptations to my rented place.... Well ( take a breath! ). .... It will be better for my life. Definitely not financially , but in terms of my mobility needs and therefore being able to get on  with what life is left.... Definitely better!


David has promised to ring tomorrow re wheel chair in car.. Ie the parts needed... WATCH OUT DAVID, if you don't ring me by noon, I'll be on to you!  Having the wheelchair in the car will mean I can go out to shop for things like curtains etc.. Also I sooooo need to practice so that I am in top driving performance to get to Northampton when Chrissies baby is born. Due sept 6 th


Perhaps I have written all this before. 
Perhaps you are getting bored. 
BUT, believe me you so can't believe how frustrated I am, AND have been.
The whole process of the car and chair started last feb. the bungalow at a similar time.
That's 6months ago! 
If as the mnda says , I might live 2 yrs, then that's a quarter of the rest of my life gone,! 
If as th NHS site says I'll live 3 yrs then that's a sixth of my life .............( better ).  


But, hell,  any fraction of my life is important. Every day, every minute now counts.i try and try to explain my frustrations, but unless you are walking in MND shoes, I guess you really can't understand. BUT Thankyou for trying, and for reading my blog.


HUG ME , I'VE GOT MND. 


twitter.com

ATTITUDES TO DEATH..

This morning at 11:00 I listened to a BBC Radio 4 program on Attitudes to Death.. I knew it was coming up and listened. 
Many of us with MND are actively thinking about our death... MND is incurable and the average life span of someone with MND, ALS is 2 or 3 years... more if you're are fortunate and slightly exceptional. 


There are always exceptions to the rule!!!


twitter.comHaving made this comment, I do realise that there are some of us with MND who don't wish to plan for their death, we all have different ways of living. 
I except this. But for me, I need to plan , to face it head on................ That's me!


So what about the content of the program?............ It looked at differing attitudes of the guests, attitudes of other cultures, and what the guests might feel helpful to prepare, or even if it was helpful to prepare...


So these are my attitudes:
I except that for a person to die in say, a car accident, or a baby in a cot death................ these sudden deaths are so hard to cope with for family and friends. They are really terrible events. I have great sympathy.


The deaths I have known, my nana, my parents.. well they have all been elderly , and perhaps you become attuned to the fact that it will happen... However, the death of my baby ,Eleanor Rose... well she was born, and I knew immediately that she would have about 10 days of life. Those ten days gave me time to prepare to a certain extent. Tough when you expect to have a new life, a new baby to take home, there is a shock. During those ten days my husband, Ray, and I spent as much time as possible with baby Eleanor... It seemed very important to spend time with Liza too. Liza was nearly four and needed her parents. I will be forever indebted to Marjorie for looking after Eliza , giving us the time with Eleanor, and caring for Liza with such love.


But I , sort of, digress.....................
What are my attitudes? Well, I'm facing it head on. I want to plan my funeral. I have lots of ideas. There are major elements I haven't decided yet. Cremation or Forest burial.... In the past I had decided on cremation but I'm on the cusp of changing this.  I have still time  to come to a decision.


Having always carried a donor card, I now realise that my body is useless for this purpose, except for one thing. I understand that if I donate my spinal cord and brain, it can be used for research purposes. I need to talk with my girls about this. But its an action I prefer.


The question of talking through all this with my family is important. There may be things I am comfortable with, but they may not be. I do hope they can cope with my decisions, but I don't want to upset them. Even after death I still care, I am still their mum. However if  I talk through my ideas with my girls sooner, rather than later, perhaps they will have time to come to terms with them.


I really don't feel my funeral arrangements are outrageous. Things like ,I would like to write my own obit, would like for a reading to be broadcast from me, would like a service in Tod and may be a cremation in The Forest of Dean... all these ideas not set in stone. All need to be discussed....


But  in the end, I guess, I will be the one who is dead. Is it right that I influence my funeral to this extent? Is it the ultimate gift of my personality, or is it the ultimate of selfishness?? I'm not sure... But I'm thinking about it. 
If you have views do contact me.


So  to sum up, I feel I'm lucky to know that I will probably die in a planned way... I won't just fade away in old age, and hopefully I won't have a terrible accident. 


This actually gives a freedom.


I value writing this Blog, exploring ideas.. many may change... you'll just have to keep reading to see how, if, they do.
Thankyou for reading. But remember , if you care for me,........... now is the time to share this... soon it may be too late. 


HUG ME, I'VE GOT MND

TITLE...YOU CHOOSE....

I couldn't decide on a title for today's Blog,    so thought  I'd give you my list of possibles. do email me nicola.woodman@virgin.net, , or tweet 1949NW, to give me your thoughts:
Possible titles are:  Or have you a better one!!

1. Laugh or You'd Cry
2. Spirometry
3. Hospital visit
4. Porters I Met Today
5. Waiting, Waiting , Waiting
6. Oh,  To Be Independent
7. Hospital Maintenance ! 
8. Gold Medal for Survival!

Today I had a planned visit to the Spirometry clinic at Hospital. At this clinic you blow into a tube which is linked to a computer. You have to do each test 10/12 times sitting, then laying down. You have to breathe long and slow, and hard and quickly.

This test measures not only lung capacity, but more importantly the strength of the muscles controlling breathing. It is a fact that these muscles will weaken. When they begin to I will have to wear a breathing apparatus...................................... 

So My appointment was at 1:45. 

I left home at 12:45.. (Jessica from next door locking the door for me. ( I can't lock the door at the back of my house .The angle of the lock is strange, and I fall if I attempt to do it myself !))

I left home at 12:45. Traffic lights along the valley meant I got to Halifax at 1:35. I managed to get the last disabled parking space. YEY! I tottered to the speaking post, pressed the button to get help. No answer. Pressed again. No answer. Kind lady in pink fleece asked if I was Ok. I explained that I was trying to contact reception to ask for a porter with wheelchair, to get me to my appointment. She kindly said she would notify them.

I waited 5 mins. Thinking she might not have given the message , I rang from my car. Yes, the message had been given. A porter on his way.

It's now nearly 1:50. Two ladies in uniform come out. Can I walk... no, sorry.,,,,A wheel chair has been ordered, but he person before me has been waiting for 20 mins... I'll have to just sit tight.... They promised to let dept know  that I was on premises, but would be late.. Thankyou.

During my wait, many cars pass.. Are you going? (politely) No sorry.. I'm waiting for a wheel chair. (Car-parking is at a premium)................... I made quite a friendship with one woman in a yellow Metropole.. she passed so many times! Eventually she said she was giving up on trying to find a space and just going home..................  Most of us in the parking situation are polite and understanding of the problem... But one man,, U goin! ... (really quite aggressive tone).. No, sorry , I'm waiting for a wheel chair. Then because I simply couldn't resist... I cant walk  .    Perhaps I misjudge him, perhaps he was about to have major lifesaving surgery and needed to park quickly........................Perhaps........................ Oh aren't I wicked!!! 

2:05. A polite porter, in a beautifully ironed shirt,  arrived, no wheel chair.( I mention the shirt because my experiences have been to date, that porters rarely look ironed, and or tidy... sorry,  but they are often grumpy too!)..

Need a  wheel chair?    OH ! Two minutes , I'll get one. At 2:20 I arrive at the correct department.

There I huff and puff. The room is small and has air con. The air seems dusty.. Remember there is a peg on your nose, so air in through the mouth causes you to get very dry. Kind lady technician, Viv, gets me water.

3:30 and the assessment is over. I am to meet my friend Val in the coffee bar at 3:40. So Porter called, and I was assured that it wouldn't be long. But I did think that I would have time to go to the toilet.

So I get out of chair, and walk in my ungainly fashion, 7 steps to the disabled loo............. All well. I finished, let down the side bar  to help me stand..... and it wobbles. I try again... it wobbles... I try again, again, again.... .................Well I've been stuck on many toilets, but never imagined this would happen in a disabled toilet in a hospital! But it did. It had!!

No option, I pull the orange cord. A woman shouts through. Are you OK?    No........ Is the door locked? ...........Yes.............. So the special key is  found quickly.  Door opened... it opens directly on to the waiting area... so potentially all   could see me sitting on the throne!! . Door closed quickly though, and the helpful woman, supported me up!!

I'm way beyond feeling embarrassed about things like this. I feel it says more about hospital maintenance than about me!!

Please note all medical staff, and support people behaved impeccably, and did all they could to help me with understanding and kindness.

Porter arrives.( Shirt OK, but grumpy).  I ask to be left at the coffee bar, by reception, as my friend would take me to my car. I asked to be left at the counter. He did................ a meter away,........... then put the brake on the chair( health and safety????)............... Stranded!.............. Kind man,  seeing the predicament pushed me into place. Coffee ordered and sandwich, (you cant eat before the test and I was starving). Woman behind counter says she'll bring over snack. Thankyou says I... But I'm now stranded at the counter. Kind man still behind me, but hasn't noticed my predicament. I turn to him, and politely ask if he will push me to a table. It was then that I found that he was deaf. (what else would he be!, NB Not a comment on deafness, which must be awful, but rather that of all the peoplein the world I choose him!!!). .... but his wife heard, and signed for him to help. Which he kindly did.

Val arrived. We sat and had a natter. FOR AN HOUR, I'M NORMAL!

Home at 5:55. Five mins early, I have a GnT.... may have another after this. Then bed I guess. I'm sooooooooo shattered. Think I've won a gold medal for survival!!

I cant wait to be more in charge of my own destiny, a wheel chair in my car will so help... its on it's way!!!!

HUG ME, I'VE GOT MND