Nice Visit Today.

Great visit from our good friend Marianne this afternoon, she bought me a delicious prawn filled crispy roll from Surima Suriname Takeaway.

They never seem to believe her when she tells them to put alot of hot pepper sauce on the sandwich; luckily we have pepper sauce here.

Since I posted about LDN yesterday I have had several comments, seems not everyone has the same reaction to this drug.

Some it helps and others not at all and one person actually got worse; the Dutch website MS Web has been very useful.

Annemiek who reads my Dutch blog told me to go to the MS Web Forum where I could read a variety of people’s comments about LDN.

The forum is very good, quite a few people have left comments about their experiences with LDN, seems there is also a diet that some people also follow.

The other good news is that doctors will prescribe it here that is reassuring, did not like the idea of doing it without medical support.

Have heard from one doctor from the OLVG hospital today, suggesting a telephone appointment to discuss LDN.

Which I will do and hopefully I will hear from the other doctors so that I have a wide pool of information.

Really need to research this thoroughly before making a decision whether or not to try this treatment.

Would appreciate if you will carry on leaving information about LDN as it would be very useful for me to be able to have as much information about this treatment as possible.

As soon as I/ we have made a decision I will post about it and tell you how the decision was made.

Low Dose Naltrexone.

Was contacted by Linda Elsegoed on Facebook and invited to join the LDN group.

Had a look for information about LDN and discussed it with Richie after which I joined the LDN group and am keen to find out more.

This is the first drug that I have heard of for the treatment of PPMS, am amazed that I have never heard of it before now.

It seems to have been around for awhile now, it started off being used to neutralise drug overdoses.

Since then, it has been successfully used for other diseases MS being one of these.

I am very interested in LDN, understand it is administered orally in capsule or powder form.

Wonder what the side effects are?

This drug is very interesting but because there have been no drug trials/tests there seems to be only personal testaments not scientific facts.

Wonder why the neurologists I saw did not mention this course of treatment, they told me that there was not treatment possible for PPMS.

Is this is because it is not in patented at the moment, to any one drug company, so no one wants to spend money on doing tests/trials on a drug that they do not have the patent on.

From what Richie tells me he has not found anything that says LDN causes any harm, there does seem to be evidence that LDN will stop pain relief from opiates.

The way I feel right now about the quick progression of my MS, is that I do not have anything to lose by trying this drug, this is made more attractive by the fact that it is an oral drug.

Would very much appreciate other peoples input about LDN,

Have sent an e-mail to my general practitioner Dr. Wijngaarden for her feedback.

As well as to two neurologist Dr Professor Polman from the Vrije Universitieits Ziekenhuis Amsterdam and Dr. Kalkens from The Onze Lieve Vrouwen Gasthuis Ziekenhuis, Amsterdam.

I am interested in their views about LDN, but even more interested in the views of other people that I know with MS.

Have you tried it and what did it do for you, please let me know, your feedback is much appreciated.

Links to LDN:

http://www.ldnresearchtrust.org/



http://forum.ldnresearchtrust.org/index.php?/topic/982-2008-ldn-fact-sheet/



http://forum.ldnresearchtrust.org/index.php?/topic/1304-linda-elsegoods-story-2009/


http://www.ldnresearchtrustfiles.co.uk/docs/November_2009.pdf

http://www.lowdosenaltrexone.org/


http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone

http://glasgowldn2009.com/category/conference-sessions/

Sunny November Day.

Amsterdam Street Art.

Watched football until very late, the Saturday night extravaganza on BBC 2 TV, before that we watched David Haye box and win against Nicolai Valuvev.

Slept very well until I got woken up by leg spasms and my arms seemed to lock solidly together.

Richie got up then, so asked him for THC which got me back off to sleep again for a few hours until 11.30.

Then did my arm exercises quickly as my arms were hurting alot, good idea to do the exercises quickly so my arms get stretched out and can function well.

By this time it was nearly 1 pm when our friend Antje was due to visit us; she did not manage to get here yesterday.

She brought us some delicious treats from Germany which we will enjoy later today; it was nice to see Antje again.

This time she introduced us to her new boyfriend, Carsten, who seemed to be a nice man.

Antje visits us once a year she promises to return sooner, especially as her daughter Ira really enjoyed her brief visit to Amsterdam.

Hope they come back soon and that we get a chance for a really good catch up this time they could only stay for an hour.

Richie is watching football on the telly, Hull versus Sunderland, hope Hull do well otherwise their manager Phil Brown will get the sack.

Would be a great shame as he is a good manager, hope he will be given the time to prove that he is the best manager Hull have ever had.

Today has been a sunny day with beautiful blue sky; the sun is starting to fade away now a sit is already 4 pm.

Dusk will be starting to happen soon and it will be very dark, already the clouds have come back.

Ah well soon it is the shortest day and longest night, and after that it is not too long before the days will get longer again.

Happy days indeed.

Abrupt awakening this morning.

Slept well last night and until 10 this morning when leg spasms and arm cramps woke me up rather abruptly.

They woke me up instantly, there is no way that I could ignore it and sleep on, no way and once it had happened there was no way I could slip off to sleep again.


Shame as I really fancied another half an hour of snoozing to get me used to being fully awake.

It is another grey, wet and cold day today; Amsterdam is like this alot, often all year round, but especially in the autumn.

It was an especially good summer this year, quite unheard of for here; we have not had a really good summer here for almost ten years.

It was strange to hear the countries all around were having a dreadfully wet weather, we kept expecting the rain to arrive here but it never happened.

It was amazing how dry and hot it was here; mind you not dry enough for it not to be dreadfully humid.

That made the heat unbearable for me, I think probably for lots of other people too.

Keeping this short today as I am off for a lovely shower and then do the Motomed exercises for 30 minutes sitting up in the wheelchair.

A good friend from Germany is in town for the weekend, looking forward to seeing her later this afternoon.

Hope everyone has a good weekend.

No Sun outside plenty of Sunshine inside.

Quite an eventful day already, I rang the bed company yesterday, to report the problems with getting the bed to go flat.

It is often quite a trial to ring this company, feel like I am being submerged in treacle as a very nice voice (a patronising woman’s voice) tries to find out what my problem is.

I tell her the bed won’t go flat and she takes me through all the things you have to do like press the green button and pull the plug out and re-plug it.

They never seem to believe you have followed the correct procedure.

Sadly it happens each time regardless of me telling her right away we followed all the instructions and the bed did not respond.

It usually adds 5 to ten minutes to the conversation, which should only be a quick phone in, establish the facts and organise a visit.

This time I did not volunteer any information until asked so our ‘conversation’ only took about 10 minutes with her cross questioning me, until she was satisfied.

She promised a call back sometime that day, with the time they could come around, hours later someone phoned to say the engineer would be around between 8am and 12am the next day.

Got them to make that between 10am and 11am, felt abit less bad than 8am to 12am, though 12am would have been perfect.

As it was getting them to agree to come between 10am and 11 am was pretty good.

The engineer was puzzled that he was here again so soon, as he had only just brought round a new handset on the 17 September.

When he saw that the only way the bed would go flat was to press another function at the same time he was amazed, but I think he won’t be puzzled for too long.

He had a look of someone who was going to get to the bottom of the reason the handset had malfunctioned and quickly too.

This engineer is a very nice man, he is a pleasant relief from having to put up with unpleasant people who all seem to make it their life’s work to sneer and patronise.

I guess vulnerable people are their targets, so a nice man like this Revacore engineer is a real find.

He has been here three times now and each time even waking me up this morning was not too unpleasant, it was good to be greeted nicely and have the bed problem sorted right away.

A relief as every time it went ok we wondered for how long and wondered when would it suddenly pack up for good.

Not the sort of questions you need to have as they detract from the main event, our day.

Everything is much later today, Richie is making me a fruit smoothie now, can smell pineapple and banana and oranges yummy my favourites.

It is a grey cloudy Friday with a hint of sun behind the clouds; don't think we will see sun and blue skies today.

Feel so good and refreshed that lack of sunshine outside is more than compensated for by the sunshine here indoors from my darlings.

Hope everyone has a good Friday too.

A Word With Four NNNN's.

That was funny, just found a comment which puzzled me from Robert saying he assumed this post was seeking a word with 4 n's, and he promised he would search too.

When I published the comment I came into posts and the mystery was solved.

Had wanted to post a small post, but first wanted to see if it would still be Wewdnesday.

No it was already Thursday, forgot that I did not delete my test post which had nnnn in it.

Quite a laugh discovering the meaning of the comment.




Last night wanted to post that I had took two awards from Mrs Blogalot and have put them on my sidebar.

The intention is for anyone who likes them to take them and place on their blogs, these are no strings attached blog awards.

So feel free to take the Divine Blogger Award and the Rock Star Award, look forward to seeing them on lots of blogs.

It started off cloudy and grey day but now the cloud cover is a touch thinner and the sun is more in evidence.

Who knows by the time Mathilde gets here for my Thursday psyio 'torture' session the sky could be blue and cloudless and the sun shining.

Hope so as there are a few strawberries outside almost totally red, hope they go red before the first night frost happens here.

The sun is nearly got through the cloud layer so Mathilde must be close by, yes i can see blue sky.

This is getting very exciting looks like this afternoon will be sunny after all.

As soon as Mathilde has been Richie will get me out of bed and shower me and I will be ready to sit up in the wheelchair.

Sunshine yippee I intend to really enjoy this afternoon.

Hope that it is a good day for everyone.

The Importance of Being.

Wild Mushrooms.


Last night ate a couple of space chocolates Richie had made for me, very good chocolates but did not feel totally reassured that they would get me off to sleep.

This was because Richie had showed me a big new pile of post and added to the pile that is already there for me to deal with, could feel myself getting very tense.

Think showing me the post just before we went to sleep was not a good idea, hope we can eat and then deal with them as I am sure its fear of the unknown that is getting me in a right old state.

Until I see the post I shall be having all sorts of thoughts which I am sure will not happen.

Think despite the cool weather I do need some air in the room as it feels very stuffy in here.

The dogs came in all damp from the rain and have filled the room with aroma of wet dog, wet and not so happy dogs.

Going around the block in the rain is horrid, going to the park in rain; even pouring rain is glorious fun.

Funny wee dogs, our first dog Daisy was like that too, if anything even more of a princess.

She hated it raining when she went round the block and would take ages to find somewhere dry so she could piss on.

A weird dog, our little princess Daisy.

She had alot of funny little ways, she would show her disapproval by sniffing, lots of different sniffs, and if I laughed she would pick Richie out as the culprit and glare at him.

If that set us both off and we both laughed she would do her Lady Bracknell (Importance of being Ernest by Oscar Wilde)impersonation and sniff very loudly and leave the room slowly and elegantly and leaving us in no doubt of the reason for her departure.

She was an incredible dog, if you said to her oh my poor darling Daisy aren't you so well today she would let her head hang down slightly and look like she had a very hard life.

Her whole body would change; before you said anything she would be standing full of vigour her coat gleaming.

And as soon as she started to play along her body would sag and her coat would not look as good, it would look a touch baggy and have no shine.

She would look like if she could talk she would tell you horrendous stories of hunger and fleeing from hostile enemies and escaping by sheer hard work and persistence on her part.

She was a wonderful brave heroine of a dog.

Looked like she took in washing to keep a family of 16 and the rest of the time she was washing floors, poor girl.

Daisy could go from happy to abysmally miserable in a second just by our suggestion, a wonderful dog.

It was very sad that she died in June 2006, on the Saturday she had a wonderful time in the park and came back very happy and immediately went out onto the b balcony with her treat, to show and bake in the sun.

She had a great day, the next day Sunday she was abit tired after Richie brought the dogs back from the park, but again took her treat out on to the balcony.

As she had water out there we did not see her again until near the end of the afternoon when she suddenly sounded in distress.

Her breathing was strange and difficult; she was gasping and looked in great pain as well as being extremely scared.

Richie gave her some painkillers that night, which seemed to do the trick as she was calmer and could eat her dinner and anything else that was on offer.

The next day Richie took her to the vets, who sent him to one with a scanner; this showed that her longs were totally full of tumours.

We very sadly arranged to take her to our vet, who already knew the test results, the next day.

Daisy was with us for one more day, where we both did our best not to show her how sad we were really feeling.

Richie had to carry her up and down the steps, two flights were too much, we had enough painkillers to take the pain away and give her a last good night with us.

She still could eat her treats and biscuits which we were very liberal with, the next day we took the tram, she moved very carefully.

We got to the vet’s and she was very happy to be there, and meet her friend Barbara, the wonderful vet and her assistant.

She even w anted her usual biscuit and after checking we wanted to go ahead Barbara gave Daisy the first injection while Richie held her in his arms.

She went off so quickly and then Barbara gave her the second injection and our beautiful Daisy was dead.

This was in the same week as my first MRI which did not make me optimistic that all would be well for me.

As it turned out despite my thinking on Daisy’s last night at home that I would not be alive for too much longer than Daisy, I am still alive and here and planning to be here for as long as possible.

We will always miss Daisy, she was an incredible dog, a lovely friend, we have so many wonderful stories we tell each other about her.

Telling stories is how we coped with our grief of missing her, that is I guess how we humans deal with life.

Story telling helps us to understand and they also help to remind us of friends who are no longer with us.

As long as we are remembered none of us will be dead, we will live on in stories and thoughts of those who are alive.





PS Will be sitting for 30 minutes later on.