I'M BACK !!

After the most difficult week I'm back !

I went to see Prof Shaw in Sheffield last Wednesday  All went well, but glad I remembered to take snacks as It was a very long day. All went as ever , just the check on my progress... do you call it that when its a decline ?? But those of you with MND will understand .

Thursday and my dear friend Chris came for the day. She was laden with goodies for lunch, plus  beautiful flowers. Chris and I were at college in Leicester together . We aslo had children at Mill Rd in Cambridge at similar times. We had sooo much to talk about . It was a splendid day.

On Friday I got ready for the baptism of my grandson Oli, and also for my hospital stay. Dear Laura buzzed about ironing, packing clothes, packing presents... and as ever looking after me so well,

Saturday morning came. The mini bus from Calderdale Volunteer transport arrived as did my mates Barry and Maria. (Barry and Maria were originally to take me in their car to Rugby, but as I can't now transfer to a car they joined me in the mini bus.) I was so happy to have their company. John, the driver, was brilliant, a lovely smooth safe drive. We arrived just on time, and I was thrilled that my girls came out to meet me. Wonderful ! I was escorted to the front row in the church and so had a brilliant view. People came to welcome me . It was lovely. But he best bit in the service was when my other grandson, Mallae spotted me and  Wandered up saying: Its grandma. Grandma, Ive got tigers , Grrrr !!! How lovely was that.! After the service, we all went back to the Dun Cow in Dunchurch. There was a splendid plates of food and lovely cake   and I had lots of glasses of champagne ! YEY!!! We left about 5:00 and got home by 9:00, Just prior to leaving I had a word with my children's dad. I said goodbye , as I doubt that I will see him again. I found it very emotional. But necessary. I'm glad I did stretch myself emotionally.

On Sunday I went to hospital to have a supra pubic catheter fitted. This episode might well form the basis of a book !! Certainly no time now to write about it. Basically I had feared that people wouldn't know much about MND and thus the handling of my body might be an issue. It was. AND it was far far worse than I ever imagined it could be ... just a quick example.. 1, I was asked to undress and when I said I couldn't, eyes were raised, : not at all they said ?NO i responded. 2. I was asked to raise my knees, I responded, Well you put them in place please.They slithered down. Why have you done that I was asked ! Because I have no control I tried to explain.    3.  But the best (!!) bit, was when a hoist with a too small sling was used. It cut into my legs. I was flat on my back in the air and my legs so splayed that they wouldn't come out of the wheelchair, without considerable pain. I was told I had to suffer the pain for a while whilst they managed me!! Boy did it hurt. But the freedom without the urethral catheter is wonderful ! That type of catheter truly must be a legal form of torture. OK my tummy is sore , but it's nothing compared to the pain I had with the other sort.

Since Ive been home . Ive rested , grateful for the wonderful sunshine. These pics were taken today as I sat in the sun.

looking to the right 

straight in front of MM 

looking left from MM 

HUG ME. I'VE GOT MND

THE PRINCESS AND THE PEA.... NOT !!!

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....


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.