Saturday, February 28, 2009

Handicapped Parking Ticket.

Last year I applied for a handicapped parkingticket I was iniatally told that they could do a house visit to check that I was indeed handicapped.

When the letter came with the appointment I was disappointed to discover it was for an appointment at the office of the GGGD.

The appointment was for 9.30 am which meant a 8.30 pick up by the mobility bus, they always insist on picking you up an hour before your appointment.

This in turn would mean that Richie would have to get me out of bed at 6.30 in order for me to be ready for 8.30 all this for 15 minutes at the GGGD office.

As I could not get a home visit I tried very hard to get a later appointment somehow this was not sucessful and in August I had to stay in bed because of the pressure sore.

Even then the GGGD would not do a home visit saying instead when they called me in September that they would check back in 2009.

In the meantime have found out from another dutch blogger that home visits are possible and will be paid for from the WMO, which is a law regulating all support for the handicapped.

So I will be applying to the GGGD next week for a home visit.

Thank you Peggy for the information on your blog.

Friday, February 27, 2009

The Care Industry

The local councils give handicapped people such aids as wheelchairs and hoists.

The criteria for the assistance are that handicapped people can take part in daily life.

However this benevolence does not encompass a real concern for citizen’s welfare as if it were so much more would be done.

As we are very rarely given what we really need and each application takes months, once it has been agreed, the paperwork has to be sent to the council for approval this last part of the trajectory takes two months until you get the aid.

For burocrats cost is everything that is their goal, sadly this often means that people have aids that are not properly adapted to their needs which are very short-sighted and in the long term not efficient or cost effective.

It seems that the buying policy is to buy a job lot of ugly, heavy wheelchairs and give everyone that applies for a wheelchair one of them regardless of their actual requirements.

No consideration is made of general health and welfare nor do they seem to trust the feedback from their clients ignoring any comments about shortcomings of the aids.

Have run in to this attitude myself time and again and inevitably it is more expensive as well as very upsetting...

My first wheelchair was given me on the basis that the advisor liked it.

I did not like it as it was too heavy, clumsy moving plus the seat was set up in such a way that the only way to sit was slumped backwards which made feel more handicapped plus the brakes were too tight for me to apply myself.

There was a wheelchair that was very suitable for me but this was from a different supplier plus it was more expensive.

I lost my appeal and was given the heavy wheelchair which I never used as it was not suitable

All in all a useless exercise and a total waste of time for all concerned.

Last year I was given an electric wheelchair that was not adapted for me as that was considered too expensive.

I immediately said that I could not sit properly and the backrest was not comfortable, was told that I needed to try it out for longer as I could not possibly have an informed view of it so quickly.

As it has turned out my feeling about the wheelchair and the lack of support was sadly correct.

The consequence of my case manager and advisor ignoring my feedback and requests for help has been a horrible pressure sore and 6 months in bed up to now before I can sit up again.

That is much more expensive in terms of the increased care I have needed plus the opportunity cost of having months of my life literally taken away from me..

Hope they finally either adapt my chair or get me one that is suitable.

Tribute to Wendy Richards

Miss Brahms and Mrs Slocombe in Are You Being Served

Thursday, February 26, 2009

Still on a high from the good news yesterday and all the emails and comments of support I have receieved.

The thought that I will be able to sit again in the wheelchair is such a wonderful idea.

Has given me another perspective of life, have done so very well not going downhill despite being confined to the bed.

Glad that I have been using the motomed to keep my legs exercised as well as the 30 to 40 minutes arm exercises that I do every morning.

Has kept my arms from becoming too weak, it has been beneficial for my hands, at the moment can still use the mouse have not needed the headmouse.

Will add a few more arm exercises that my fysio advises plus startrr to concentrate on my back muscles.

And start to push for my wheelchaor being properly adaped so there is no danger of my having another pressure sore.

Roll on end of March and a party to celebrate as well as a party in April for my darling's 50 th birthday.

Good things coming up yippee!!

Wednesday, February 25, 2009

Good news............

Yippeee! Ton, the wonderful nurse from the RCA (Rehabilitation Center Amsaterdam)was here on his bi-weekly visit and measured the wound and joyfully told us it was a 1 cm smaller than two weeks ago.

This is brilliant news we were all beaming especially Ton, he is a very good nurse, very helpful,gentle and very supportive of Richie.

Which makes me quite fond of him.

He has been visiting us every week since August 21, his help and advise have been and are invaluble.

Even though we have become quite fond of him, he is a very nice person,still it will be nice when he does not have to visit anymore.

Looking to not seeing him as that will mean the wound has healed, Ton's careful estimate is end of March.

Tuesday, February 24, 2009

Link to Trinidad Carnival 2009

It's a new day.......

Woke up as usual except oh joy today I dozed off again after the usual abrupt entrance into being awake.

It was glorius having abit of time dozing before being fully awake, lay here wondering where the low moaning sound was coming from and then realised it was me.

Funny to realise that the sound of someone in pain was coming from me.

Been getting lots of comments recedntly which is really great makes me feel very supported.

Thanks everyone for your caring it is very much appreciated.

Hopw you all have a good day today.

Monday, February 23, 2009

Who knows tomorrow could be the day.

Good nights sleep last night got woken up as usual by cramps in my arms, which means that I do not wake slowly.

It is more like being hurled than a soft sweet awakening and once awake sadly little chance of resuming sleep as every move even yawning provokes another cramping up of my arms.

Bad news yawning whilst doing the arm exercises as my arms go rigid and full of pain, it will take a minute or so to get them to relaxed again.

Most days its all over with happy slumbering once the rigid arms have woken me up but every now and then I sucessfully drift back off to sleep.

Happy days when that happens and I can shut out the reality of MS for another hour.

Who knows tomorrow could be the day.

Sunday, February 22, 2009

Happy memories.

Just been reminded by a dear friend of happy times together before the diagnosis of MS.

Happy memories indeed of lovely times sitting around the table in the kitchen at the Passeerdersstraat.

Feasting on delicious food cooked by Richie, fresh bread and homemade jams for breakfast, freshly made pasta and delicious curries as well as great cakes and ice creams.

Still enjoy Richie’s wonderful cooking but due to my manual dexterity getting less eating has become a struggle for me.

Sadly have not been able to sit by the table in the last 6 months since I have been in bed..

And even before that our routines have been changed drastically.

Can't remember the last time we had anyone round for dinner....think 2007 when we were first here.

And even then only a handful of times, the last parties were last year for my birthday and the picnic we had in July last year both very good had great fun both times.

On my birthday we partied until 3 am was excellent drank a lot of proseccio delicious!

Since I have been in bed we have eaten alone except when Gareth and Paul visited and when Martin visited, both those occasions we enjoyed very much.

And I did not feel too self conscious of my clumsy eating and the tea towel tucked into my shirt.

Lots of things that don’t do anymore like don't drink coffee anymore stopped in 2007 when drinking coffee had several negative effects one was having to piss too much also- do not like the taste anymore only the smell.

Eating food is now very strenuous so a chore mostly not a pleasure as I do my best to get food from plate to mouth.

Lots of food difficult and needs cutting up, things like pizza or rotis too hot for me to pick up or fish like plaice too many bones could choke.

Can only use one utensil at a time so can't sit and eat slowly nor can I use both hands at the same time so no eating and occasionally picking up a glass for a sip of wine
Use a plastic cup as it is lighter and do not drink alcohol anymore and since chipping off a couple of teeth in the last years don't want to risk more by eating pistachios/cashews or other nuts shame as they were favourites.

The last time I had a sip of proseccio was at New Year’s when I had a drop in my plastic cup not the same as a champagne glass.

Used to love a rum punch and a bowl of chips and hot tomato pesto and cashew nuts and pistachio nuts and a nice joint or two for both pleasure as well as medicinal purposes.

Getting a wee bit sad as I am writing as I recall past pleasure and note that it was not so long ago.

That’s what makes this so hard is that it has all been so quick and I am not remembering events from distant times but last year and the year before.

Saturday, February 21, 2009

Woke up crying today.

Edmonton, Canada.

Woke up this morning crying, Richie was straight over to my bedside and held my hand and stroked my face lovingly.

Abit of a shock to wake up like this but after the storm of weeping was over it was quite a relief.

Good to be able to share everything with Richie especially these moments as its better to let it out than keeping it in.

It is very scary what is happening to me and not acknowledging it would not be good.

I am frightened and do not want to hide it from my myself or Richie or anyone else.

Once my tears stopped I could dry my face and start doing the arm exercises that I start evry day with.

And now I feel alot better and can enjoy my day.

It is frightening what is happening as the progress of the MS has been so very fast it has been difficult to keep up with it emotionally.

Eva Cassidy Danny Boy

Friday, February 20, 2009

Misty morning in Wales.

Tomorrow is going to be a better day.

Had a few months recently of saying I am ok every time I was asked how I was doing and kept saying it at all times.

I’m ok I would say with a bright smile, well I thought it was bright, turns out no one except myself was convinced that I was so ok.

Was trying to be positive but also trying to avoid discussion of how I was, trying at all costs to avoid these discussions.

Particularly difficult were telephone calls with my auntie Sigrid in Canada who each time she called asked me if I could walk again.

Being asked such questions time and time again is painful for us both; I understand auntie Sigrid asks as she so desperately wants me to get better.

She does not want to accept the truth and as I noticed awhile ago neither did I.

But can’t deny the truth which is that the likelihood of me getting better is very unlikely, in fact it is not going to happen.

Could not bear the pain and anguish in my friends faces and voices when we talked about how I was, really preferred to not go there.

Really wanted some respite from endlessly talking about how I was.

How I was, was shit so shit that I was just desperately trying to escape it and saying ok seemed the way to do it..

Saying ‘I’m ok’ was a good way of getting out of too many endless discussions about my condition.

Partly it was because I did not want to concentrate on the MS all the time, don’t want to just be identified by the MS.

Its bad enough having MS in such a progressed state but to have to be submerged in it every minute was and is sometimes too much.

Was trying to escape which of course is not possible it was me trying to pretend it was not happening.

If I did not see it then it was not happening the ostrich approach to life as I had learned from my parents.

Luckily a couple of things happened one of those was two friends who had doubts about my ‘I’m ok’ story and the other was my realisation that pretending the MS had not happened was causing me pain.

Realised that my behaviour was mimicking my parent’s behaviour which is not what I wanted to do, I am not and have never been an ostrich, have never wanted to hide the truth and did not want to fool myself or my darling Richie and friends.

Hate dishonesty and once I realised the deception I was trying to use I could stop and resume being me and being open with everyone.

What an instant relief and what a good move to come out and communicate how I feel with my darling Richie and all the friends.

Much better than trying to keep it all to myself, which did not work and which only ended up worrying everyone and at the end was starting to alienate me from my friends.

The MS is still ever present but by communicating how I feel I have received heaps of supportive and loving feedback.

Support is so important and despite my superhuman endeavours to go it ‘ alone’ can’t do it on my own none of us can we all need support and to give support.

Thursday, February 19, 2009

Always expect the best.

Snowdrops in Wales.

Always expect the best can result in the best happening.

Much better than expecting the worse and somehow making it happen to.

When I realised that my role was still important was seeing what the effects and consequences of my becoming depressed would be like on us.

It would have been horrendous, we would be demoralised plus the wound would heal slower and it would be a downward spiral.

Expect the best and hope for even better.

Wednesday, February 18, 2009

Edmonton, Canada.

Chose for life or not.

Perspective is very important now my options are limited. Do I get on with it and make the best of everything and enjoy what there is to enjoy

Or do I remove myself and don't get on with it and don't make the best of it and therefore don't see what is there to enjoy?

The options are either be positive or chose for negative and therefore not for life.

Despite it being hard living with the quick progression of the MS for me its clear that I had no choice but to chose for being positive; the other option was not good.

When I had to stay in bed realised I could cry and howl against it and get Richie and myself depressed or I could chose to acknowledge all the good things like our love for each other.

I made the choice that is best for us and for me, the correct choice for us, that was to chose for us.

Simple there was no other option that was viable.

Did not want to get sad and take everything down with me and get depressed that is not my choice

It’s the classic half full or half empty glass I chose to see a half full glass and to enjoy the party.

Don’t want to stop participating before I have to, want to enjoy all I can and there is more than I thought.

I owe myself more than sadness because I deserve joy and so does darling Richie and all our friends and family.

Tuesday, February 17, 2009

Thanks for the support and love.

Nearly did not publish Robert's comments yesterday but glad that I did as the result has been alot of great comments full of support and love.

Yesterday showed me aqain how good it is to be a part of the blogsphere.

Feedback is crucial at any time but especially for me now that I am full time in bed.

Like Richie I too hope that others are spared what has happened to me/us feel like a storm just like in the Wizard of Oz came along and tore me away from everything and when I got back nothing was the same again.

Sadly the wizard, the neurologist I met could not help and seemingly was not even sympathetic, no bedside manner at all.

It is difficult to make major adjustments even worse when everything has to be constantly readjusted.

I do not try and list what I can't do anymore as its an endless list so make a list, a small one of things that I can do.

They include.
eat and drink.
brush my teeth, clumsy but works.
talk alot.
sing cept only know first couple of words then trail off.
type with one finger.
love my darling Richie.
love my friends.
enjoy the dogs.
listen to audio books in three languages.
laugh alot.
enjoy Richie's humour.
enjoy everything I can.
be supportive.

Quite a list good to read and to see that though life is restricted to one room but with laptop and internet I am in touch with the world.

Monday, February 16, 2009

Winners and survivors.

Can you really fight MS and 'win' and can you be a plucky ‘survivor’ not possible surely once it has come into your life.

MS just strolls into your life uninvited and takes it over, it just steals your life.

I was diagnosed in 2006 with Primary Progressive MS and it was more progressive than we, Richie and I could have ever imagined.

The progression of the disease has been so rapid that everything has become outdated almost before it has been implemented.

It is a real shocker and extremely scary and unexplainable, it's hard not being able to adequately describe how it feels having MS.

Friends and family find it very hard to put themselves in our place and are quite often very worried and scared as are we.

Even the most sympathetic/empathetic person can't feel what those of us with MS are feeling.

None of us can feel what another is feeling, so we are all isolated in our own experience which is why it is even more important to make contact and to communicate with each other.

We need to give ourselves and others a break MS is a shocker which worries us all.

Sunday, February 15, 2009

MS aches, pains and miseries.

Strange day today felt odd, everything was not ok for me a strange feeling.

Things like less hand function making me very frustrated indeed and inclined to think everything is against me.

Not true just the MS that has made life so difficult and painful.

Ouch!!!!! howl..... sob!!!!!

After that the day was ok and now it is evening and then the bit I do not like so much the night.

If I am lucky can sleep for most of it otherwise try and lie quiet which is difficult once awake and feeling all the pains and aches.

Saturday, February 14, 2009

Strange world!

Had a reasonable nights sleep not bad considering the pain I was in the night before and during the day yesterday.

Consequently I had abit of a weepy day yesterday.

Still in alot of pain but think sleeping well stops me feeling so desperate.

Feeling abit brighter today and aim to keep feeling like that.

Yesterday felt like a burden not just for Richie but weirdly also for myself.

Felt quite desperate there for awhile calmed down later and it helped that I could lose myself in watching a pogramm about animals on the telly.

Animal Planet is a good distraction for me.

It's a strange world where so much money is spent on weapons and making war and killing people yet there is still no cure for MS and other horrible diseases.

Friday, February 13, 2009

Nice visit from a good friend.

Nice visit from Karin.L yesterday, one minute it was 15.00 and she arrived and we started to talk and the next minute it was 17.00.

Time goes quickly when you are enjoying yourself and always do when Karin.L is around.

She will be back next friday, looking forward to it already!

Thursday, February 12, 2009

Bi-weekly inspection of pressure sore

Yesterday our wonderful nurse came by to check on the progress and while he was pleased with how it is progressing it had not got much smaller than the last time when it got a cm smaller.

Apparently it is often the case that the last stage of healing can seem to drag on forever.

Need to remain focussed and optimistic which I will do with my darlings support.

Wednesday, February 11, 2009

Have been asked by someone from Mediciglobal who are working on a multiple sclerosis clinical research study assessing the safety and effectiveness of an oral medication called teriflunomide to place a statement from the company.

Did not want to place the companies statement on my blog as I do not feel it fits in with the thinking and style.

However do not want to deny anyone the benefits of this drug so here are the links:

Visit or call 1-866-565-0245 today to learn more about the study and see if you may qualify.

Tuesday, February 10, 2009

Having a restful day today slept quite well last night but still very tired today so decided to do very little today.

We had another very pleasant visit yesterday from our friends Gareth and Paul.

Gareth used to live here in Amsterdam, came on holiday in 1988 and returned to live here the year after.

Although he has been back in Wales since 2003 we still miss him alot, Gareth is an absolute darling a really extraordinarily fine person and his partner Paul is a sweet kind man.

So nice to see two such nice people so happy togther.

Their two visits to us have given us a tremendous boost.

Monday, February 09, 2009

Science News

Natural, Soy-based Substance Might Help Fight Multiple Sclerosis, Neuroscientists Find.

ScienceDaily (Dec. 12, 2006)

A natural substance made from soy appears to have amazing restorative powers when given to animals with a multiple sclerosis (MS)-like disease.
Using an animal model of MS, neurologists at Jefferson Medical College found that giving doses of a substance called Bowmann-Birk Inhibitor Concentrate (BBIC) dramatically improved the animals' ability to move and walk. The scientists, led by A. M. Rostami, M.D., Ph.D., professor and chair of the Department of Neurology at Jefferson Medical College of Thomas Jefferson University and the Jefferson Hospital for Neuroscience in Philadelphia, say the treatment's effects may be useful in conjunction with more mainstream therapies such as beta-interferon in helping patients with MS. They report their findings December 12, 2006 in the journal Multiple Sclerosis.

MS, one of the most common neurological diseases affecting young adults, is thought to be an autoimmune disease (in which the body attacks its own tissue) affecting the central nervous system (CNS). In MS, the myelin coating of nerve fibers becomes inflamed and scarred. As a result, "messages" cannot be sent through the nervous system.
Dr. Rostami, who is also director of the Neuroimmunology Laboratory in the Department of Neurology at Jefferson Medical College, and his group used an animal model of experimental autoimmune encephalomyelitis (EAE), which mimics MS, to investigate BBIC's potential immune system-suppressing properties. BBIC inhibits proteases, enzymes that play important roles in the inflammation and demyelination processes that are at the heart of MS. It has been used for other conditions, notably precancerous conditions in the mouth.
He and his co-workers compared two groups of animals with EAE. One group received BBIC, while the other received only an inert substance. "Animals that received BBIC were able to walk while those that didn't get the drug were not," he says. He notes that the animals aren't cured but can walk with some limp or weakness. "The results are promising because this is a safe, natural compound from soybean and is given orally."
Further analysis revealed that the central nervous systems of animals that received BBIC showed "significantly less inflammation and demyelination" than those that didn't receive the therapy. "It's the first time that BBIC has been used in an EAE model and has shown significant disease suppression, and we hope it can eventually be used in humans," says Dr. Rostami. His group's next step is to design clinical trials in humans.
The scientists are not sure how BBIC works in multiple sclerosis, but they theorize that it suppresses the immune response to some extent, in addition to inhibiting proteases. Dr. Rostami sees BBIC as being used as a single therapy or in conjunction with other drugs in treating MS. He notes that because current therapies for MS involve injecting drugs such as interferon and copaxane, one goal is to develop an oral agent. BBIC could be given by pill daily.
Over 400,000 Americans acknowledge having MS, though nearly one million Americans may be living with the disease. Symptoms can include fatigue, loss of coordination, muscle weakness, numbness, inability to walk or use hands and arms, pain, vision problems, slurred speech and bladder/bowel dysfunction.
Adapted from materials provided by Thomas Jefferson University, via EurekAlert!, a service of AAAS.

Sunday, February 08, 2009

It is a shocker knowing that I will not be getting better but I won't.

Sadly it will only get worse as this is a degenerative disease.

Was fortunate to not know that I had it for quite a few years, reckon since 1974, that’s when the first unexplainable thing happened.

Fell over a couple of times just after a flu jab at work, tests were done but no real answers, they thought epilepsy but apart from the couple of incidents nothing more happened.

Then fast forward to 1982 suddenly one day whilst running for a train heard a flapping noise and looked down it was my left foot.

Next day no problems and none until 1986 when had a few times when I could not put too much weight on my left foot, that too stopped as suddenly as it started.

Then on 1999 in winter ran after a tram and pulled my hamstring took ages to get better.

The next incident was in 2001 when I tripped and fell climbing out of a boat, and then in 2002 I jogged up to the print room at work and felt my hamstring go again.

The next year 2003 suddenly one day on a walk across town could hardly walk anymore stumbling all over the place, it happened once and stopped.

By 2004 every time we walked for more than an hour on the return journey my right foot would drag.

In the spring I got a new job which involved a walk of ten minutes to the tram stop and then another walk of ten minutes at the other end noticed that I was walking slower and slower on getting out of the tram by my work.

After awhile discovered a bus stopped closer to where we lived and stopped round the corner from my work this helped alot.

In 2005 started falling over, three times before I fell and broke the cartilage in my knee in the September.

Seemed to be recovering with phsyio until my birthday March 17 when had balance problems and started walking weirdly swinging my right leg out to the right.

As it transpired later these were the first clear signs of MS, that strange way of flinging the right leg outwards and wobbling.

In July all became clear with the diagnosis it was Primary Progressive MS.

We are both adjusting to a life that is dramatically different from my/our life before.

Now I can do nothing for myself, can't even move my toes anymore nor can I file my nails or pluck the hairs on my chin.

Can only move my arms and type with one finger can't right click with the mouse or multi task and type and answer the phone.

Richie does everything for me; he puts straps around me and gets me out of bed with a hoist.

He showers, dresses and helps me with everything.

Now he dresses the pressure sore which has me confined to bed till it heals.

Been in bed now since 21 August last year, feels like forever but I will not give up on my life and my life with Richie.

He is brilliant looks after me with such love.

Despite this horror, the MS that has come into our happy life and turned it all upside down we are still very happy together.

Difficult for us both, Richie works hard and has to cope with seeing me get worse and the frustration of not being able to do anything to change it.

And difficult for me in alot of pain all the time and being so dependant for everything.

I make the best of everything and I still have the best, my beautiful darling Richie who I love so very much, and who adores me. He fills my life with love.

Love him back and let him know how much everyday.

Compared to what life used to be like its horrible but we have our great love and our friends and neighbours.

We make the best of it and enjoy all we can.

Saturday, February 07, 2009

Pressure Sore.

Have been in bed since 21 August with a very nasty pressure sore.

Really glad that I did not know about how serious it was at the beginning, not that I could have run away screaming.

Could have screamed and bawled and carried on and got myslf and Richie very depressed indeed.

Did cry for the first hour and was not at all happy but realised very quickly that to allow myself to be sad and miserable would be disasterous for us both.

Instead decided to concentrate on the good things, like Richie, our friends, how well I was being looked after to name but a few things.

Very glad that I did not know how deep the wound was, only heard a few weeks ago that it had been overe 6 cm's wide and nearly as deep plus it stank.

Took until October to clean the wound and until then Richie had to wash and dress the wound twice a day.

Then it started to look clean and slowly progress was being made before Christmas the nurse got more cheerful about how it was going.

From then on Richie has only had to dress the wound once a day.

Since last week the nurse will only come to check on the progress every two weeks instead of evry week.

The wound is getting smaller it was just three cm's last week and Richis has been advised to cut down on the amount of bandage he packs into the wound.

Now we are all waiting to see if the progress will remain as good as it has been.

Hoping the end of the month will bring some good news about when it will be estimated that I can sit again.

Thursday, February 05, 2009

Good friends visiting tomorrow!!!

Two good friends will visit us tomorow for lunch and spend a few hours here.

Really looking forward to seeing Gareth and Paul, they are such sweet men.

Lovely to see them so happy together its brilliant.

Richie is going to prepare a great lunch for tomorrow.

Can't wait.


Wednesday, February 04, 2009

Good friends and neighbours.

Our good friends and neigfhbours are priceless they give us so much support and love and understanding.

Which is excellent and stops us getting too isolated and sad.

Have to remember to ask people to come by as do sometimes forget and wonder why there are no visitors.

We are all brilliant people but not such good mind readers, so need to communicate that it is nice to have visitors.

Oh well as with everything onwards and upwards.

Here's to good friends.

Tuesday, February 03, 2009

Thinking about..............

Freshly made ravioli filled with cauliflower/fresh basil leaves/roasted pine nuts and halumi (cheese)all minced apart from nuts and baked in a rich aubergine/tomato sauce with shards of parmesan. Lots of garlic/black pepper and wine to richen the sauce.
Dessert of fresh lemon custard tart


Trinidad chicken curry or salt fish curry with roti's fresh tamarind and aubergine pickle and mango chutney and onion relish.

Dessert fresh mango sorbet.


Hake steak marinaded in garlic/ginger with a shot of soya sauce and white wine and fried with onions/garlic black pepper and served with chips and tomato and olive salad, parsnip and sweet potato crisps and freshly made mayonnaise.
Dessert Apple and Plum crumble with fresh lemon custard.

Monday, February 02, 2009


Writing is always exploring even writing essays for uni where they had to be very structured was an exploration.

In my essays I always somehow ended up where I wanted to be.

And each time it was a surprise.

Think I always ended up where I wanted to be because I had sletched it all out in a few notes, knew what I wanted to prove and did it.

In non essy writing this is the same except the journey is longer more intense as the story has more room to live a life of its own.

Begin the day with two Jack Russells.

My days start with the sounds of Spike one of our two Jack Russell terriers squeaking in the front room.

This is followed by him charging the door and running in to the bedroom full tilt followed by Marleen the other terrier.

They swoop on Richie's bed and demand cuddles and then games in quick sucession.

At this point I start to do my arm exercises, then when the dogs let him get away Richie gets up and massages my legs.

Spike then decides he wants me to play ball with him which we manage somehow it gets too exciting for him so he dashes off with the ball to his bed for a game on his own tossing the ball in the air and catching it.

As soon as I have had my pills Richie can have his morning cup of coffee and I my chocolate drink and read the newspapers online.

That's how it goes everyday

Sunday, February 01, 2009

Sunday 1st February 2009.

When I was diagnosed in 2006 I was so shocked felt my life had ended did not expect to wake up the day after but I did.

Then slept loads over the next few weeks and was abit of a 'hermit', also because I could not walk any distances.

The 'hermit' period was soon over and was soon researching the acessibility of the city for handicapped people.

Amsterdam is not very accessible, where the buildings are very old ok but new buildings.

Public transport in the city is dreadful and the trains only accessible if you call in advance then you get helped in and out so you can't travel just like that.

It was quite a shock to find out the reality of life for so many yet little is done to solve the problem.

In 2002 Amsterdam spent millions on new trams that are only accessible when a metal ramp is put out and this can't be done at most stops as there is no room so handicapped people can't use the tram.

Yet millions were spent on the new trams ditto the trains where they also spent millions but are not independently accessible maybe by 2020 they will be accessible who knows.

The trams and trains were bought a year or two before the European law on accessibility was passed.

Meanwhile we have to make do with booking the mobility bus which sadly means more planning and even less spontananeity, except they are always very late so all your planning goes haywire.

Well have learned to keep calm and almost can do it now, glad when we moved to a flat with a lift and did not need to book the bus and be carried down the stairs.

Only good thing about being stuck in bed is how much I appreciate what I have and my darling Richie and his love.

It's done me good enjoying what I can enjoy, there is more than I thought.

Keep warm and happy!
Good night's sleep last night fell asleep before the music stopped.

Often lie awake for what seems like hours, often don't know when I fell asleep except know have been asleep when I am suddenly awakened by extremely strong muscle cramps in my arms.

Muscle spasms and cramps courtesy of the MS, amazing that I can't laugh or yawn without my arms and shoulders getting cramped and staying like that all through yawning and laughing.

When that happens sleep is over as it is difficult for me to go back to sleep again, so usually the only thing I can do then is listen to my darling sleeping and if it is very early hear the sounds of Amsterdam waking up.

Last night was very good fell asleep real quick and when I woke it was 10 am and only briefly pain and discomfort in my arms even managed to doze for awile until Richie got up and it was time for leg massage and pills.