Me and Spike in the summer.

Beautiful days and lovely friends.

Recently been having alot of very good days,not my body just my mind, luckily the weather has been generally good too, most days blue skies and sun.

Makes me aware again how short life is and that it's the only one we have, don't know about other people but recall worrying so much about things that did not matter as if I had to be perfect and this is a dress rehearsal for life and not the real thing.

Aware too that the MS has progressed faster than we thought it would, wish I were wrong and hope that I am but if it carries on as it has then in another year I won't be able to sit up and eat and talking and beathing independtly won't be possible anymore.

Then I shall exercise my right in Dutch law and get my doctor to help me die, it's not something that I look forward to hate the idea of not being here with my darling Richie and all you lovely people.

Richie said that I was getting ready to die which is not entirely correct as I am doing everything to enjoy my lifec now and what I have which is lots and the last thing that I want is to die.

But I wil do the only diference for me its sooner rather than later and won'be a surprise thing.

Really wanted to get really old with my beautiful darling Richie was looking forward to it very much and still am.

My life amd my dreams are far from over, intend to really enjoy this Christmas.

Spike and me 9.12.2008

Christmas trees and roses

US Poet Laureate Ted Kooser

Catherine Jenkins

Thanks for all the support.

A big thank you to all the wonderful people in the US who collected money for me recently which will help me to get an alternating air pressure wheelchair cushion.

They raised 600 us dollars which is brilliant and that will be put towards the 2,900 euros that the cushion costs here.

Thanks for all your support it is very appreciated.

Given me a huge boost and that has helped me to cope with having to be in bed for so long.

Thanks all you wonderful people.

Good news, roses and christmas tree.

On wednesday the wonderful nurse from the Rehabilitation Centre Amsterdam came by on his weekly visit and was very pleased with how the wound looks.

On his instructions Richie can now stop applying the wound cleaner and start with something else.

He is very pleased with the progress and so are we.


What a relief to know that progress is being made.

In the afternoon a friend came around and brought a beautiful bunch of roses, that are the lovliest roses that I have seen in ages.

Not only beautiful but also smelling like roses.

Later on Richie popped out and bought a small christmas tree for the bedroom.

Its lovely and makes the room look great.

Do you feel lucky today?

Find it difficult to deal with questions such as:

What does the doctor say?

In my case nothing as they do not know and can not make a prognosis.

Or are you any better?

No and I won't be better.

Or about the wound when do the doctors think it will heal?
They have no idea and say slowly.

It's very worrying to have an illness where doctors can not help me which is weird as we are all brought up to think the doctors can always help.

Just not with something like primary progressive MS then doctors and patients have to gamble.

The good and not so good.

Today my favourite cousin, Katrin visited me which was very good.

Every month she spends a week at her mother's in Essen, she travelled there from Normandy, France yesterday.

And this morning she got on the train at 9am to come to Amsterdam to visit me.

She got here at 12 noon and we talked and talked and then suddenly before we realized, it was already 17 pm and Karin had to leave and head off to the station to catch her train back to Dusseldorf.

A lovely day sadly after Katrin had left I discovered that my right hand is not working too well am finding that its difficult to open things and amd finding it very hard to use my laptop.

Hope its a temp. blip and not that this is the end of being able to keep myself amused with playing patience and freecell and mahjong and read the papers and listen to the radio.

Nothing earthshatteringly important but activities that have meant that I can cope with what is happening to me

Good days

Been good days these last few days.

Thursday our lovely neighbour Willes came down and helped us sort through a huge pile of post which was brilliant as I could not cope with it.

Not easy to do the administation lying in bed.

Huge relief when all the post was sorted, dealt with and filed away.

Friday was another good day,first had a lovely visit from our lovely friend Jeanet and after she left our two lovely friends Gareth and Paul from Wales came to visit.

They are in Amsterdam for a week, it was brilliant to see them looking so well and so happy together.

Gareth moved back to Wales in 2003 still miss him living close by but can see that it was the right decision for him.

It was a good visit, Gareth and Paul went up the road and brought back a delicious meal which I throughly enjoyed.

A very good friday.

Tom Jones busking for a cancer charity

http://www.metacafe.com/watch/2063242/tom_jones_before_he_was_famous/

Interesting program

http://www.bbc.co.uk/radio/aod/radio4_aod.shtml?radio4/ssmindi

Want to use my blog to share how the MS is going and how I am coping.

That's the theory in practise notice that I often do not write some things cos I don't want to upset.

Which is crazy but there you go, think that now perhaps I will be able to write freely again.

Yesterday was a good day but sadly in the evening things went differently.

Richie was getting me out of bed with the hoist and had just hoisted me up and was getting me off the bed when I said get me to the shower chair quick as I feel that I am slipping and as I said it I fell.

Luckily my fall was broken by me striking the bed with the back of my head and after hitting it twice ended up on the floor.

Richie got the phone and dialled the emergency number as my head began to bleed copiously.

Willes, our neighbour came down soon as Richie called her and held my hand while Richie pur something under my head to staunch the bloodflow.

The ambulance people arrived and were very good they got me up on the bed and checked my head which turned out to be a scraped head and not a deep wound.

What a relief!

Thay advised me to take a painkillere and to wait for an hour before getting out of bed.

We took their advice gladly as we were both having a reaction to what had happened.

Was very wobbly for a couple of hours and finally after midnight Richie got the sling attached to the hoist and gently and safely got me out of bed.

Feeling optimistic now there is progress with the wound feel now that there is a good chance that I will sit again soon.

Today the nurse from the Rehabilitation Centre came round on his weekly visit.

He was very pleased with the progress of the wound and agreed with Richie that it was a tiny bit smaller.

Its great to hear progress is being made even if slow onwards and upwards.

Richie started a blog yesterday here is the link:

http://screamingrichie.blogspot.com/

Judy Collins and Pete Seeger

Good news.

Good news today from the plastic surgeon who visited this morning with a colleague and the wound care nurse from the Amsterdam Rehabilitation Center.

The doctor was very happy with how the wound looks and is now confident that it should heal slowly.

He confirmed that there was now no need for an operation.

What a relief.

He complimented Richie for his excellent care and especially for keeping the wound clean and well bandaged.

The nurse said they could not do better at the rehab. center.

We are both very relieved and happy.