Good News From Ton

Slept until 10.30 nearly 11 then did my arm exercises and got Richie to do my legs not too long afterwards.

Needed to do both as I woke up almost screeching because of how still land painful it all felt.

Doing my arm exercises was almost brave as the room had not really warmed up by that point.

Still it was good to straighten my arms out and move my fingers, should be alright to type today, usually I am ok until it is time to be lifted by the hoist then my hands start to cramp up and Richie has to take over the mouse and open and shut things for me.

Once I am back in bed after the toilet and a shower and clean clothes and I have done my 30 minutes on the Motomed my hands are fine again.

Weird but evidence for me, that any stress is no good for MS.

Ton was here at 1.45, sadly no Ludwine she could not be here today she had too many patients this morning.

I did not mind, the fewer people to examine my bum the better,

Ton had good news, the healing is going well, it is even smaller, Ton was nearly saying perhaps by next week.

Except he is a nurse not a gambler, so we will wait and see and who know by next week all sorts could be possible.

So the rest of Thursday is at my disposal, Willes will be here after Mathilda, my physiotherapist who is due now,

So first more arm exercises with weights round the wrist, then Willes to help wit the post, and once she is gone, Richie will get me out of bed at 4 pm for a shower and nail cutting.

All go today and relax again in the late afternoon early evening.

Sweet moments all the way.

Bright Cold February 3rd 2010

Pop Art.

Thought Ton would come here today, so took a lormetzepam last night and slept until 10.30 did my arm exercises and Richie did my leg massage and exercises.

After that I took my baclofen and calcium/vitamin D tablets and then brushed my teeth and washed face and neck and hands.

Then I was ready for the weekly inspection by Ton, from the RCA, the Amsterdam Rehabilitation Clinic.

The phone rang and it was Ton to say he wouldn’t be here today, but tomorrow at 11.45 with Ludwine, the doctor’s new assistant.

She, Ludwine is made for this job, she is so good, good empathy with her target group which are people rehabilitating from a variety of reasons and causes.

When I first met Ludwine I was still walking, if only just, had recently bought a smart black walking stick.

Then I could just about get up and down the two flights of stairs between me and the outside world.

Shame the tablets they have now to stop walking getting progressively worse, were not available then, they may have been able to help me then.

Maybe if my first neurologist had taken some action, things might be different now too, he did nothing and would not even give me any information, none.

He very clearly told me in so many words, I can’t help you are going to get progressively worse.

We can warehouse you, and give you personal care, we just can’t offer you any medical care, and there is nothing we can do to influence your MS.

Sadly there is nothing we can do, but observe and watch and document your steady decline.

All the more reason for me to make sense of it by deciding I can only be here and now, we all are.

We all need to realise that we all only have this now and none of us know what the next minute can bring.

Sounds good to me, like the only good way to live.


It is very cold today and bright and sunny which I am going to enjoy now.

I am enjoying all the moments today

Heard from Richie last night that the park was getting frozen, all the water was iced up again.

It is another relaxed day which I am really enjoying very much, it has been raining all day and all the snow has gone now.

A good friend Cecile came round to visit us which was very nice, we drank a glass of proseccio and caught up on the last couple of months.

Not a bad way to spend a rainy afternoon, even though it is such a dark rainy day it was noticeable that it was already getting dark later.

Nice to see that happening on the 2nd of February this has given me a huge boost which I really needed right now.

Watched Terry Pritchard giving the Dimbleby lecture on BBC last night, where he calls for a change in the law so people can chose when they die.

It was a moving lecture read by Tony Robinson (Balderick in Blackadder on TV) because Terry can’t read so well anymore.

He has been diagnosed with Alzheimer’s and does not want to be dependant on care when his disease progresses and he can no longer look after himself.

What he emphases was that he did not want to die, he like me needs to know that we can say ‘’ now it is enough, let me die now’’ and our wishes are respected so we can live now.

Live fully now and enjoy the moments without any worries about what the future holds.

I am enjoying all the moments today and am looking forward to another day tomorrow and what the new day brings.


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Sunshine and Electricity.

Had other nights good sleep, the sleepy tea + THC works well together, makes me feel extremely relaxed.

After drinking the tea and inhaling a few vapour bags I could hardly keep my eyes open, while Richie put Vaseline on my lips.

Richie always checks the position of my body and corrects my posture, last night I did not notice a thing, as I was practically asleep at this point.

The next thing that I was conscious of was noticing that I was awake again this morning, and feeling all the pain again.

Luckily all is well with my catheter today, yesterday here was a hint of an emergency about it as we both realised that I must have at least a liter and a half in my bladder.

So glad today was by contrast a slow start to the day, I very bravely did my arm exercises even though I wanted to avoid them.

The weather has not been quiet, first the sky was grey and cloudy then the clouds went and the sun came out

We had about an hour of gorgeous sunshine and then quite dramatically the clouds were back and a huge downpour of snow happened.

It was a heavy downpour of snow, nearly a whiteout. It was over after 5 minutes, then the cloud had gone after another minute the sky got very dark and there was more snow, this time smaller flakes.

Then there was the sound of thunder and the sound of the first Monday in the month, city alarm.


Quite a show all together, there were a few more snow showers before the clouds moved on and now the brilliant sunshine is back.

Gorgeous sunshine but you can tell it is very cold, not cold enough for any of the snow to stay.

Mathilda my physiotherapist will be here soon, so I will hear all about the weather from her, hope it has not got too slippery out there.

I can smell that Richie is making bubble and squeak as our lunch time banquet, yummy, it was good yesterday.

http://en.wikipedia.org/wiki/Bubble_and_squeak

Plus the ice cream was also very good, banana and coconut with small pieces of walnut and date.

The walnut pieces are excellent and the addition of the date pasta made it even creamier and nice.

Hope everyone has a good start to the week today.

Oh dear the sun has been covered by new snow clouds, it looks like it will snow again.

Just to make sure we are not too relaxed the power has gone off.
And my mattress alarm has gone off too; it does not seem to be the fuses as Richie immediately checked them.

Seems to be a general power cut.

Hope all is well soon as I feel additional pressure from the mattress being static, all is well again the electric is back on phew what a relief.

Sunshine outside and electricity inside
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Happy days!