Thursday, September 30, 2010

A Good Friend And Neighbour.

Today is a totally different day to how the weather was yesterday when the sky was blue and it was warm and sunny.

When I woke this morning it was a dismal and grey rainy day, an incredible contrast to what it had been like yesterday.

Sadly did not get outside yesterday as our ex neighbour Willes came by to visit us, was very good to see her again.

Even though we did not visit each other daily, we knew she was around, always abit of a buzz around Willes.

Miss her being in the building, the other neighbours are just not like her, it has been such a pleasure being neighbours for the last three years.

First really good neighbour since I lived in England, what I like about Willes is that she is very direct, very open and honest
What you see is what you get, she is not a prejudiced woman, on the contrary, she treats everyone exactly the same.

Great to have someone like her around, good to get to know her, yesterday we gave her a little present to let her know how much we appreciate her.

Nice to let friends know that they are appreciated and a very good thing to do especially yesterday with Willes.

She has been an outstanding neighbour and is a good friend.

Wednesday, September 29, 2010

Shocking Stem Cell Therapy Story.

There is a terrible story in the news today in England, about a doctor who was exploiting MS patients with promises of a cure by undergoing expensive stem cell treatment.

Shocking to hear this story and only confirms for me yet again that there are too many who seek to exploit vulnerable people with degenerative diseases like MS.

Having MS which has no cure and where only disease modifying drugs are available makes us all very open to exploitation by unscrupulous people.

Who want to make a profit at the expense of exploiting people’s fears and desires to find a cure for their MS.

We are all vulnerable to people like that with promises of cures and who would not want to be cured of MS.

I know that I would love nothing more than being cure of my Primary Progressive MS, would love to be able to move my body again.

To go for a walk with my darling Richie and go once again to visit all our favourite places in the city.

Would be wonderful to be able to walk, to go to the toilet and shower independently, to do all the things that I took for granted until I could no longer do them.

As I have found out once my MS progressed so fast there was barely time to register what was happening before something else happened.

After my diagnosis in 2006 I went online to find information about MS and also found many offers of cures, which I knew were not based in reality.

They all seemed to be about tapping in to the fears and exploiting the vulnerabilities of people with an incurable disease like MS.

That is why the story about the unscrupulous doctor was so shocking to hear about on the radio today.

The idea that a doctor should be exploiting people in this way is very worrying and has really shocked me tremendously.

From BBC Website 29 September

Stem cell doctor Robert Trossel struck off by GMC

Dr Robert Trossel had consulting rooms in London and Rotterdam

A doctor who offered unlicensed stem cell treatments to patients with MS has been struck off by the General Medical Council.

Dr Robert Trossel treated several men and women, who paid around £10,000.

The GMC found that the doctor, who trained in the Netherlands, had breached good medical practice by "exploiting vulnerable patients".

Dr Trossel, 56, who worked in London and Rotterdam, conceded he had been "too enthusiastic" about the treatment.

At an earlier hearing, the GMC Fitness to Practise panel said that Dr Trossel had exaggerated the benefits of treatment based on "anecdotal and aspirational information".

 His patients, who had an aggressive and disabling type of multiple sclerosis, paid up to £10,000 or more for stem cell injections, with some raising the money through charity events.

However, the stem cells offered were not intended for human use, only for laboratory research.

Tom Kark QC, for the GMC, spoke of the patients' "anger and sense of being let down".

"They were all vulnerable patients who already found themselves failed by the medical profession in this country and as a result were searching, some with desperation, for a cure or relief elsewhere, which is why and how they ended up in Dr Trossel's hands," Mr Kark told the GMC.

"They were given false hope by him and the experience not only cost them financially but for the most part it caused them personal and emotional loss when they realised that the treatment provided to them was not only expensive but pointless."

The treatment also contained bovine brain and spinal cord, and the GMC panel ruled he had abused his position as a doctor by failing to warn patients about potential risks of vCJD.

The doctor's own lawyer had told the hearing how patients were informed about the experimental nature of the injections, and that he had stopped using them when the nature of the stem cells became clear following a BBC Newsnight investigation.

He said that the doctor was "compassionate", and had not acted dishonestly.

Despite Dr Trossel's apparent "change of heart", panel chairman Professor Brian Gomes da Costa said he had shown "little insight" into the seriousness of what he had done, and how it might have affected his patients.

Patient fears

The GMC heard that the patients involved had yet to be refunded the thousands of pounds they paid for their treatment.

Karen Galley, 45, from Essex, visited Dr Trossel's clinic in August 2006, and was charged around £10,500 for the treatment, receiving one injection in the arm and six in the neck.

‘’ It makes me feel sick that somebody could exploit vulnerable people in this way”

 Karen Galley Patient of Dr Trossel

Friends and colleagues of Ms Galley had helped her raise the money, with one running a mini-marathon and another undertaking a sponsored diet.

She said she was "angry and scared" after finding out that the injections contained bovine spinal tissue.

"His QC has described him as a compassionate doctor - but that is rubbish, no compassionate person treats people like that."

She said that she now lived in fear of diseases such as vCJD, for which there is no test or treatment.

She said: "It makes me feel sick that somebody could exploit vulnerable people in this way."

Another MS patient, accountant Malcolm Pear, from Bromsgrove in Worcestershire, visited the Rotterdam clinic in January 2006.

After paying £8,000, the treatment was delivered in a "coffee lounge" rather than a private treatment room.

"I suppose alarm bells should have started ringing then," said his wife Lesley.

She said they were led to believe that the treatment was composed simply of umbilical cells, but found out later that bovine tissue was involved.

After a fleeting improvement, Mr Pear's condition has now deteriorated significantly.

Mrs Pear said: "When you are sitting in front of a neurologist who is saying 'look, there is nothing you can do', you clutch at straws."

"I am not saying we are the most intelligent people on God's Earth, but we certainly are not completely stupid."

After the verdict, Dr Trossel said he was "disappointed".

He added: "I would like to take the opportunity to say how sorry I am for any distress caused to my patients during this time.

"During my career as a doctor, I have always practised with the objective of achieving the very best for my patients."

‘’ You have exploited vulnerable patients and their families...Your conduct has unquestionably done lasting harm, if not physically, then mentally and financially, to these patients and also to their families and supporters. ‘’

Brian Gomes da Costa of the General Medical Council

Tuesday, September 28, 2010

We Inspire Each Other.

Paul Gauguin.

Really enjoyed writing my post yesterday, good choosing the blogs that I wanted to give the You Inspire Me Award from Kris @ Behold the Metatron.

It was a lot of work made lighter because I enjoyed doing it so very much, good to let others know that they inspire me.

Important for me to let other bloggers know that they help to make my life better and easier because of their inspiration and support.
When I went to publish yesterdays post I made a happy discovery that all the links were made active without my having to do anything apart from click on the compose option.

That was a brilliant discovery especially as there were 50 links to be made active, so quite a  relief to find it would not take ages just a couple of clicks.

Nice to feel happy with Blogger instead of annoyed because of yet another glitch, as there are so often.

Today I am still enjoying choosing the blogs to pass on Kris’s fine award to yesterday, if I could have I would have given it to all the blogs I visit and read.

Hope that no one thinks that they are not inspirational because they were not on the post yesterday.

Yesterday I choose a cross section of all the blogs that I visit and enjoy reading again and again, good to know and experience that we all support and inspire each other.  

Monday, September 27, 2010

You Inspire Me Award.

Award From Kris @ Behold The Metatron.

Was pleasantly surprised and delighted the other day by getting the You Inspire Me Award from Kris @ Behold The Metatron.

Lovely of her to think of me, I am very touched to be given this award by Kris, inspiring each other is very important I believe for us all.

Will very much enjoy passing this award on to some of the blogs that inspire me, would like to pass it on to all the blogs that I read as they all inspire me.

Sadly I will not be able to do that as my index fingers are not functioning so well due to the weather changes here.

Having to choose some does not detract from the fact that I think they are all good blogs, that all inspire me and I hope many others too.

I shall enjoy choosing the blogs to give the You Inspire Me Award from Kris @ Behold The Metatron and hope they too will enjoy passing the award on.

Here are some of the blogs that inspire me:

Stephany @ soulful sepulcher

I am on a journey. on a journey. Take a walk with me. Life is short. So stand tall.
"Always go too far, because that's where you'll find the truth."~Camus

Ana @ Hella Heaven

" To see what is in front of one's nose requires a constant struggle." George Orwell

S.S-O @ Multiple Sclerosis & Me

MS: Multiple Sclerosis, My Story... I am a Trinidadian; I will use lots of Trini slang/words and will explain as I go but lime=hang out; i will use that a helluva lot!
Karen @  Meandering........One Moment Please.
My Random Musings, Thoughts And Observations As I Meander Along Life’s Many Paths.

Muff @ Kaleidoscope Muff

A journey through the various stages of my MS.

JC @ Lilacs And Cats
Life isn't about how to survive the storm, but how to dance in the rain ... author unknown

Dianne @ A Stellarlife

Living a life with Multiple Sclerosis and all the rest. This blog will include my views on current events, disability issues, entertainment and silliness, politics, health issues, and I am sure to offend some; but the celebration of diversity is my main goal.

Judy @ Peace Be With You

On the MS Journey
About My Poems
Haiku poems in triptych allow me to distill the MS experience into very few words. While these poems have journal-like qualities, they are not my daily journal. They merely represent what I or someone I know will have experienced on the MS journey. That said,
My poems will span
the emotional spectrum.
That is what I live.

A smile may lift me
past my MS challenges.
I share that with you.

Sometimes sadness trumps
easy laughter and resolve.
I will write then too.

Andy @ Jughead's Baltimore Blog, Our Life With Multiple Sclerosis

These are the things that make me scratch my head and say "Whaaaaaa"?

Mary @ Travelogue for the Universe

A rambling train of thoughts about the universe and our micro solar system consisting of our dear Sun and other planets in a magnetic dance while we hurtle through space on the face of a rock and stare at flat screens where we attempt to connect while we detach.

Rei @ NecROSEphelia

An endless symphony of blasphemy

Sherry @ Word Salads or the Demyelination of Me

Living single with multiple sclerosis and the loss of a child
Janis @ just breathe janis
Gerry @ Broken Dreams

Crazy Cris @ Here and There and Everywhere

Odds and Ends, Random Thoughts, Funny Observations, picked up from Here and There and Everywhere.

Kimberly @ My Journey with Multiple Sclerosis

Every journey starts with a single step. My journey started "officially" in March 2006. Now, four years into my journey, I often find myself amazed at how this disease taught me a lot....about me. I find the hot air balloons a perfect representation of my journey, with all it's ups and downs....I still soar.
Marie @ Nourish: Living, Laughing Whining

Webster @ halt stop forget relax

Living a life with MS. This is a place where I say what I want; I can criticize, be rude, and fart out loud if I need to. I can and will get pissed at my MS, but prefer to work along with him. Usually I am well-mannered and gracious and behave myself. So do come in and ride along with me.

Chekoala @ ... .... Wobbly teetering blogging

... ... ... ... things you don't notice are much better to have working ... ... until the shoe is not on the other foot
Hilary @ The Smitten Image
For The Thousands Of Words Pictures Are Worth

Linda @ Occasional Scotland

Scottish life and landscape in photos, from Edinburgh to Shetland and points between
Justyna @ Love Lives In The Kitchen



Stan @ Is Something Not Quite Right With Stan - A Mental Health Blog

Chessie @ Chessie's Tales, Motorcycles and Ride

Marc @ Wheelchair Kamikaze

The Rants, Ruminations, and Reflections of a Mad MS Patient

Libby @ thoughts...usually with attitude...

Carole @ Carole's MS blog

The MS Roller Coaster. A ride that never ends.
Tessa @ Aerial Armadillo
Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in sideways, totally worn out and yelling joyously ....
"WOOO HOOO what a ride!"
Darlene @ Rustic Ranch

Chloe @ Chloe is...

Running with a bottle of wine.
Donna @ Arranging Shoes…….Thoughts From AWonky Walk Girl

Maryann @ azoyizes and MS

I was diagnosed with MS in my late 30's, but was having symptoms in my early 20's. The past six years, I've slowly gotten worse. Then, I began Tysabri. I call it my miracle drug. After three infusions, my balance and leg strength had improved to where I was able to take walks with my husband and my dog. My diagnosis has been changed to SPMS.

Mitch @ Enjoying the Ride

I have Primary Progressive Multiple Sclerosis and sit in an iBOT wheelchair all day. So why do I lead such a contented life?

Kelli @ GUMBO

A little bit of this and a little bit of that. Family, friends, daily challenges, living with chronic illness and disability and more....

Juli @ Tales From the MS Front

assorted rants and maybe some silly things about having MS

Amelia @ Tales of Life with Multiple Sclerosis

In 2002 I got the earth shattering news that I could possibly have Multiple Sclerosis. In 2003 that news was confirmed. I was 29 years old. I wanted to start this blog to go over the last few years of dealing with this illness and look forward to the future as it happens. If I can give hope to just one person, that life isn't over when you get life changing news, then this will have been worthwhile!

Cranky @ Musings of a Cranky Caregiver

A Blog About the Random Stuff that Floats Through My Brain

Tara @ Living Day to Day with Multiple Sclerosis

iving with Multiple Sclerosis is a daily battle. MS is the invisible disease or at least for most people. We fight many emotional and physical symptoms all the time. We need as much support as we can get. However due to the invisible symptoms we tend to not get a lot of support and that brings on more emotional stress which in return brings on more MS symptoms. A Vicious cycle.

Gina Castle @ Gina Castle: Traditional Batik on Silk

Welcome to my gallery! Batik is an ancient Javanese art form of design on fabric. It is a process of applying hot wax on cloth then dyeing it. To "add" color, the process is repeated several times. Each piece is individual.

Mort @ Caring And Sharing
Marit @ Marit Chrislock-Lauterbach

Cathy @ Dare To Think
A haven for dreams, ideas, rest.
Blinders Off @ Living-With-MS
Living with multiple sclerosis is like a box of chocolate. You never know how it will affect you the next minute, hour, or day. I refuse to let MS control my life...what about YOU.
Denver Refashionista @ Living! with MS

Sunday, September 26, 2010

Beautiful Sun For A Few Minutes

Cold grey day today with just now the first and seems last hint of sunshine for today, would not be surprised if it starts to rain soon now.

This morning Richie even put the heating on briefly as it had got quite cold in the bedroom with the window open all night.

I like the window open at night think I sleep better with good ventilation rather than if the room get warm and stuffy because there is no air circulation.

Last night got quite concerned as my mail was not working kept getting error messages, so long since I worked on a Computer Helpdesk I forgot the error codes.

Luckily I could ask Steve what it meant:

The connection to the server has failed. Account: ' (1)', Server: '', Protocol: POP3, Port: 110, Secure(SSL): No, Socket Error: 10013, Error Number: 0x800CCC0E

And he told me that the email server was down which was a relief as I had not changed anything.

This also explained why I could not access my webmail and then found out Richie had the same problem.

Today all is fine again, mail has come in and I have sent mail which is good, felt quite cut off yesterday as if I would never receive or send mail ever again.

Realise again how much I do rely on my e-mail hate to think of my life without but sure that I would manage somehow, sure we would all find good alternate ways of communicating.

Think that Face Book and Hotmail and Gmail would get used lots more; see plenty enough other ways to communicate if my provider’s server does not work
The sun has come out and in the background there is a very dark bank of rain clouds which will happen soon.

Glad I got to see the beautiful sun even if only for a few minutes today.

Saturday, September 25, 2010

Looking Forward To Being Out And About.

Jan Toorop.

Slept well last night, was very happy after going out yesterday, sadly after an initial bright start to the day the cloud cover increased and it rained.

Real shame as we had planned that I should go to the market with Richie today and we would do the shopping together like we used to enjoy doing.

Richie went off on his bike, to get the shopping on his own and came back after an hour with full bicycle bags.

While he was gone I read the newspapers online and listened to the football commentary on BBC Radio 5.

I also sent a mail off to a website called Wi-Care to enquire about their rain capes; they are slightly more expensive than some of the other websites.

The advantage with them is you can choose colour and even fabric; something which I think is worth the extra expense.

The other websites had very standard dull looking capes, their mottos were obviously one style and colour was good for everyone.

I do not agree and was extremely happy to find the Wi-Care website, look forward to hearing from them, hopefully on Monday next week.

Look forward to getting more information when they respond to my mail; be great to have a nice warm rain proof cape that I can go out even if the weather is not pleasant.

Look forward to being able to go out even if it is raining or threatening to rain, be nice to be outside snug and dry no matter what the weather is like.

Have bought a couple of purple fleece jumpers and two fleece jackets, one red and one black.

Now I need to buy some new thermal long underpants and tops and a couple of warm trousers and warm socks and I am set for the autumn and the winter.

Looking forward to it all very much; be nice to be out and about in all weather, especially if I am well wrapped up.

Friday, September 24, 2010

Today Was A Lovely Day.

Billy Childish.

Got up at 10.00 this morning and was showered and dressed by my darling Richie for 11.30 and did my 30 minutes on the Motomed, was ready for the appointment at 12.15 with Johanneke, my occupational therapist.

She was here at 12.15 and was very apologetic about the miscommunications and the resulting delays; she promised it would not happen again.

She also promised to send me a cc on all correspondence relating to me, which she did today, seems she already got several things sorted today.

Such as my new bed which goes up at the head end which should allow me to sit up better, that is something of a bonus for me especially if it works well.

I will also get another appointment for the IPaq, the Home Servant; this lets me switch on lights and turn on the TV and DVD player, makes the bed go up and down and sits me up.

There are some teething troubles so they need to return, Johanneke has organised the next appointment for 13 October.

She will be here for an hour to check that all will be well installed and adjusted, think this is a great idea.

As at the first appointment two software nerds came here who could only install but not communicate and inform us as to what they would do.

The result was a few things I/we did not want and which did not work very well, such as two lights in the kitchen area which do not work at all anymore.

And doors I can only open if I am right in front of them and other bits and pieces, am very optimistic that with Johanneke here on the 13 October, it should all go better.

After the appointment we had a nice tasty brunch and then went out at about 15.00 for a walk/roll around the neighbourhood.

It was lovely and sunny weather with a slight cool breeze which did not bother me as I was wearing my new red fleece jacket.

We had a really good time; it was brilliant going out this afternoon and enjoying the sun on my face, my darling Richie bought a few pretty plants, all in all a very good afternoon.

Thursday, September 23, 2010

Enjoying The Moment.

Egon Schiele.

Yesterday was a lovely warm day, it was 22 c, went out with Richie and the dogs, did not have to wear any extra clothes just put a big pretty scarf around my neck.

It was really lovely being outside in the sun with my darling and our doggies, I enjoyed sitting in the sun.

At first when Richie suggested going out I almost did not want to go, mainly because of my painful arms.

It was good we went out as yesterday may have been the last warm sunny summer day this year.

My arms were extremely painful, I had to stop very often for a couple of minutes but each time I could carry on again.

The dogs get very excited whenever I go out with them; Spike and Marleen get quite energised walking next to my wheelchair.

A sweet sight the two little mad faces grinning and jostling each other to see which one gets to walk right next to me.

Sometimes they are quite a handful for Richie to deal with; they are very over excited when I am out with them and they have only eyes for me which is sweet.

This gives Richie abit more work as he can't rely on them seeing and responding as they normally do, eventually they do what he wants them to do.

They got so excited they peed all up the road making a visit to the dog toilet quite unnecessary when we finally got there.

Really glad we went out as I did enjoy being outside very much, nice to feel the sun and the air on my face.

Good to get out and enjoy the moment with my darling Richie, the love of my life, good to enjoy the moments with the man who means so much to me.

Wednesday, September 22, 2010

''Comeback Kid''


So aware these days of every little change that is taking place in my body because of the MS, notice things that I try to both register and ignore at the same time.

Can see very clearly, that spending so much time nearly two years in bed, because of the deep pressure sore has been extremely bad for my body.

Spending so much time in bed has weakened me considerably; I shall never regain the use of my muscles in my torso.

They have gone for good now; all that time in bed has turned them from muscle to ‘pudding’.

I can no longer sit up unaided, if I try with Richie’s help, I collapse to one side or another.

Sometimes I feel like any longer and I would look and feel like a collapsed Yorkshire pudding.

These two years have been lost to me in terms of mobility, getting around, having interactions with people outside of our apartment.

I have made lots of friends in the blog world and think that without their support and writing my blog things could and would be even worse.

Feel very much that these two years have weakened me and given the MS a chance to move in even more.

Hope very much that what has happened to me will not happen to anyone else; hope that no one else will get such a deep pressure wound.

All because the people who organised and supplied me with my electric wheelchair did not make sure the wheelchair was the right size and provided adequate support.

Neither of those things was done and my feedback. reservations and misgivings were ignored and I was told to give it some time to get used to the wheelchair.

Well I did that and 5 months after I got the wheelchair I had a virtual crater of a pressure sore, which was 10 cm deep as a result.

Coming back from that is difficult and has taken all my strength and will power and endurance and does so every day.

Amazingly there is life after such an event and I am that ‘’comeback kid’’ who intends to enjoy as many moments as possible while I can and I do.

Ernst Ludwig Kirchner.

Tuesday, September 21, 2010

Who Knows Maybe All Will Go Well Soon.
Trini Art.

Gareth and Paul popped by yesterday for a cup of tea which was really nice; we listened to some singles Gareth had bought and some of Richie’s record collection too.

Sadly they left for the last time this visit to Amsterdam, at 16.30 and Michelle, my advisor from the local council came by to adjust the arm supports yet again.

It is not a good system, adjusting the arm supports and neck support is very tricky, takes time and lots of patience.

When finally adjusted the arm support will shift again very easily and be a pig to readjust to the right place again.

While she was her she told me, that she had talked to Johanneke on the 27 august about the need for her to check that the arm supports were in the correct position.

She was therefore amazed when I told her that last week Johanneke had told me the project had stagnated without mentioning that the reason for this was the fact she had not been round to check.

Friday this week she will finally come round to check the arm supports and once done and she has informed Michelle all is well, then Michelle can give the ok for the table to be made.

Really disappointed with the way this has all gone, the whole process started on 31 May and had already taken too long, without Johanneke adding an extra month on the project

Seeing Ludwine last week only served to remind me of what a wonderful occupational therapist she was, very attentive and very supportive to us both and always treated me as an equal.

On Friday I plan to let Johanneke know that I am very disappointed with the fact she did not make an appointment once she knew, she had to check before the table could be made.

Will emphasise that good communication is key, always had that with Ludwine, plus could she talk to me in her voice not the sugary voice for invalids.

Hope to have a constructive appointment this Friday and who knows if all goes well, the table might even be here this time next month.

Monday, September 20, 2010

Being Handicapped Does Not Mean That I Have Become Stupid.

A very dreary cool, grey and rainy day, Richie just came back with two very damp dogs, from taking them down to the dog toilet by the canal at the end of our street.

Today is my physiotherapy day, Mathilde will be here at 14.00 for 30 minutes, it is always a good session and I generally benefit from the exercises and shoulder massage.

Michelle, the advisor from the local council will also come by to check my arm supports; hopefully the saga of the wheelchair table will come to a good conclusion soon.

Still can’t believe that while I was waiting for the table to be made from the lengthy measuring session which took 2 1/2 hours on 25 august nothing was happening.

To my amazement found out last Wednesday, that nothing was actually happening as my occupational therapist Johanneke had to come and check the height first.

No one, neither Harm, from Welzorg the mobility company, nor Michelle told either Richie or me this on the 25 august.

If they had have done so, I would have immediately got in touch with Johanneke right away for an appointment ASAP.

But I did not and Johanneke said nothing either, nor did she tell me she was the cause of why the whole project had stagnated.

She just told me that it was stagnated, found out that she or rather her lack of coming to check was the reason nothing was happening.

Really incredible that this has happened especially, after the whole saga of things such as the arm supports, this took months to get adjusted.

Months of painful arms and shoulders because I had to support my arms and shoulders myself.

Can’t believe that my occupational therapist seems to have let me down so badly by not coming by quickly to check the arm supports.

Know for a fact that my old occupational therapist Ludwine would have made an appointment right away, she was very supportive of us both.

Ludwine came to visit us last week Wednesday which was very nice of her, good to see her again.

Shame she is not still my therapist, she is outstanding always acted in my best interests, never adopted a different tone of voice when talking to me.

Always felt like equals which h does not happen too often most including Johanneke adopt their voices.

They talk to me in that sugary tone of voice for the hard of thinking which I hate so much.

Decided the next time that happens, instead of ignoring it I shall ask whoever it is to not patronise me, as I am an equal, being handicapped does not mean that I have become stupid, my handicap has not diminished my intellect.

Sunday, September 19, 2010

Quiet Day.

Gareth's Photos From Wales.

Took my occasional sleeping tablet last night, as I had not been able to sleep well all week thanks to noisy drunken people on the street.

Quite annoying for us, fun for the drunks as they shout at each other with no thought for anyone else, when standing right next to each other.

Going to get a quick post written and get Richie to heave me out of bed before it gets later.

The dogs are happy they have been out to the park and are happy in their beds dreaming of their adventures.

We are both a little tired after Friday but still keen to do it again soon, nice to spend time with others.

Especially us as we often only see Mathilde my physiotherapist and no one else all week

We have nice friends here that we see for brief visits, it’s not like I remember in England or Germany or Trinidad, people here are a touch more reserved, they are nice kind people, who are good fun.

Maybe it is me and not them, next year it will have been here 30 years and still feel like I just arrived.

Oh well living for now, today lots of pain and stiff clumsy fingers difficult to type but does not stop me being me.

Saturday, September 18, 2010

Great Fun.

Party Pictures.

The party was really good yesterday, seven friends joined Richie Gareth, Paul and I for a very enjoyable time last night.

Richie’s food was delicious and the tabboleh, potato salad and green salad complimented the quiches excellently, as did the chutney and pickled onions.

The German chocolate biscuits Katrin brought us last Saturday went down a treat as did Richie’s cupcakes.

We have a lot of proseccio left so Richie has suggested we have another party soon,
maybe nice when Marianne is back from holiday and Anja, Willes can be here too.

I had been feeling self conscious before the party but last night when our friends were here I had no more worries.

I was very clearly just myself Herrad and my handicap was of no importance. It was not a topic of conversation as we had plenty of other things to talk about and we did.

Two friends Lin and Eva helped me to eat as my hands we were .very cramped so could not pick up my quiche slices.

Richie that he enjoyed the fact he could sit and enjoy and not have to wait to eat after helping me to eat.

It was great fun so much so we went on for an hour longer than planned until midnight, had a catheter problem at 22.45 which took a couple of minutes to resolve.

Then we rejoined the party and decided that we were having such fun to carry on for another hour.

Having Gareth and Paul staying for three days has been wonderful gave us both a tremendous boost.

So nice to spend time with good friends, one good friend, Grainne was here last night who we do not see often as she has a hectic schedule.

Another friend Eva joined us, who we had not seen for five years, felt like yesterday that I last saw her as we slipped easily into chatting and laughing.

All in all a successful party and something we intend to do again very soon look forward to the next party.

Friday, September 17, 2010

Party Time Tonight.

Shinkichi Tajiri

Rained all night and was still pouring at 8.30 this morning and then at 10.00 the sun came outand everything looked wonderful.

Gareth and Paul went off for a walk in the Vondelpark and a coffee in the Blue Tea House in the park.

On their way back the clouds came back and it started to rain, luckily not as heavily as it had done during the night.

It is just about 15.30 now and every now and then there is a promise of sunshine which is immediately covered by thick clouds.

Today I do not mind what the weather does as here inside it is sunny with happy anticipation of the party this evening.

Richie has gone out to get bottles of proseccio and rum and some tahni for the humus and Gareth is cleaning the front room.

It is all happening here which is great feel quite excited about tonight, Webster is right saying ‘’ Anticipation is an underrated joy in life.’’

Have had a lot of pleasure all week looking forward to tonight and right now am finding it quite hard to concentrate.

Richie just arrived back with a bargain box of proseccio and a bottle of rum for rum punch, Trini style.

It is all happening here now, looking forward to getting out of bed again at 17.00 so that I am ready when people start arriving.

We have all the makings of a memorable party, shame that all our friends can not be here too that would be brilliant.

Two hours to go going to stop and post and relax.

Thursday, September 16, 2010

Good Friends.


Today has had moments of sunshine and also moments of lots of rain but nevertheless it has been a good day.

Brilliant having Gareth and Paul here to stay, really good to have good friends around, good for both of us.

Nice to talk with them both, good fun and quite a difference for us as quite often there are weeks where only the physiotherapist will come by.

We usually do not mind being on our own as we enjoy each others company very much, but it is good to interact with others.

Paul fixed the problem with the amplifier and it works perfectly again which is really great, he also spotted that the record deck needle needed replacing, luckily Richie had a spare one.

Tonight we listened to our records, much better quality on vinyl not as sterile much more atmosphere.

We enjoyed it tremendously, Richie is planning to buy some records again, he had seen some recently but had not bothered to buy it at the time.

Once he has worked out where to put the record deck we are all set for lots of good listening this autumn and winter.

Tomorrow is our party really looking forward to it very much indeed, quite excited about it now, can hear Richie busy making delicious things for tomorrow.

Can’t wait for tomorrow evening now.

Wednesday, September 15, 2010

Sunny Days.

Purple Auroras, Sept. 8th over Bø, Norway.

Today has started off sunny with blue skies which are so amazing seeing as yesterday was so cool and grey and rainy and downright miserable.

It got dark really early, the lights in the stairs and on the galleries in our building went on just after 18.00 and I noticed cars too had their headlamps on early.

Our dogs were miserable yesterday as they do not like rain, unless they get to go to the park but yesterday it was a rainstorm not a gentle rain shower.

Today all of us, including the dogs are cheerful because of sunshine, spoke to Gareth just now; he and Paul will be here at 16.00 this afternoon.

Happy to see them this afternoon, be really good to have them staying here for a few days, it’s a nice thing to do.

Makes life feel normal like before the MS, think I will be abit self conscious about eating with other people present as that is becoming increasingly difficult for me to do.

My right arm can’t stretch out like it could, can not straighten out my elbow out which makes it difficult to get food to my mouth.

Have been coming to terms with this, when I can’t carry on Richie helps me and feeds me, not something I like but on a purely practical level when I need help to eat I will ask for it.

As this has been happening more and more I have been able to accept that it is happening, hope that I will be ok with eating on Friday.

8 friends will be coming here for our little party, Richie is going to be making quiches, bread rolls, humus, and guacamole, bowls of spicy Tempe and Tofu cubes and potato crisps.

He will also make small individual cakes which he plans to ice and we have several packets of fancy German biscuits which Katrin brought us last Saturday.

Friends will be bringing potato salad, green salad, tabboleh, macaroni salad and fruit salad as well as nibbles like nuts and raisins, dates and olives.

Looking forward to Friday immensely, be good to see a lot of friends all together and good for me as I come to terms with the effects of MS and no longer want to hide this from our friends.

No need to as it does not detract from who I am and my friendships.

Tuesday, September 14, 2010

Finding Friends.


Taking it easy today as my fingers are very stiff and painful and it is extremely difficult to type.

Think it maybe because the weather has changed and got cooler today as well as very wet.

Found an old friend from when I used to live in Reading, Berkshire, England, that is ages ago now as I left there in 1981.

Finding David on Face book was amazing; think it must be at least 15 years since we were last in touch.

Nice to find old friends again, it certainly set off a whole train of thoughts which has been pleasant.

Finding David also helped me find another friend Susan and her two lovely daughters Sophie and India.

Quite a special day finding old friends like David and Susan again, I am very happy that I have found them again.

We have already sent each other messages which is excellent, look forward to hearing more from them soon.

Funny finding David today, as I had almost given up hope of ever finding him again, and now I have feel very happy that I have.

Today it has been a dreadful day, grey cloudy and then it began to pour with rain, became quite a rainstorm precisely when Richie wanted to go out with the dogs.

Guess they will have to wait until tomorrow now unless it is dry now and Richie has the energy left to get on his bike and nip them around the park.

Sadly it is still raining; this must have been one of the wettest summers ever and one of the quickest, two weeks in August and that was it.

Well onward and upward, tomorrow our visitors will be here and Friday is our party really looking forward to both events.

Monday, September 13, 2010

Sometimes It Is Sunny.

Karel Appel.

Slept surprisingly well last night despite thinking about my mother and how awful she had treated me when I was a child and also as a teenager.

Not surprising that I started thinking about it all once Richie turned the light off, as we had been talking about my mother and the effect she had on me when I was still at home.

Realise more and more now that she was a very sad and disturbed woman, who never got the help she really needed.

Talking about this and other things with Richie has been very good and helped me to understand and put things in their proper perspective.

Glad that I was able to live through it and get away from home as soon as I could, when I look back now I am amazed that I did not get more hurt.

Instead it made me very strong; in some way living at home with my mother prepared me for just about anything even living with MS.

Eventually I went to sleep last night, despite getting caught up in thinking, although I did wake up at some point in the night, some THC soon helped me to carry on sleeping.

Until a horrible noise outside woke us up, felt regretful that the night was over so soon as I would have loved to have slept some more.

Today the weather has been a changeable day, mainly sunny but every now and then a big cloud would pass over the sun and it would get quite cool.

Then the sun would shine again and it was warm and lovely again until the next big cloud came along and covered the sun again.

Guess that sums up life sometimes it is sunny and sometimes not but it never remains the same.

Sunday, September 12, 2010

Rumours Of Sunshine.

Assger Jorn.

Yesterday was sunny which was nice for my cousin Katrin’s visit; she has been visiting twice a year since I had to stay in bed in August 2008.

Every time she was here it was cold, grey rainy and cloudy, so yesterday was very pleasant for her for a change.

It was something of a revelation for her, funny to think that there has never been nice weather here on any of her visits, apparently also never on earlier visits to Amsterdam either.

Seems she expects Amsterdam to be grey, cloudy and raining, guess we get a very changeable climate as we are so close to the sea here.

Wonderfully the mosquitoes seem to have stopped earlier this year probably because the summer was so bad.

Last year we were sleeping under our mosquito nets until November but this year we have not needed them since mid august.

Had a lot of pain and discomfort yesterday and last night, which was helped by lots of THC before Katrin’s visit and afterwards too.

Suddenly the temperature got very warm last night, strange for that to happen at night, it was around 20.00 that it became very uncomfortable for me.

Thought that I was having a problem with my catheter, Richie checked and it was working fine, had not slipped out of place or even moved.

Turned out to be then temperature and the fact that I was covered by my duvet, which is quite warm.

What a relief to find it was the outside temperature not my body going mad, great relief, took half a sleeping tablet last night as we were up late watching Match of The Day.

It worked well and I slept after 30 minutes until I woke up coughing early this morning Richie got up and gave me some chamomile throat spray and some THC.

The throat spray took the urge to cough away and the THC helped ease me back to sleep which was good for us all as it was 06.00 when I woke.

It is not such a nice day as yesterday but, it is brighter now so I turned the light out now, and there are rumours of sunshine which is very pleasant.

Saturday, September 11, 2010

Saturday Morning.

Theo Wolvecamp (Dutch, 1925-1992) Member of The COBRA Group.

Saturday morning came so quickly one minute I was asleep the next I was awake, saying hello to Richie who was already up and dressed.

Funny to be so fast asleep one minute and the next so wide awake and right away doing my arm exercises.

Gareth just phoned me to say they were all ready and packed to come over here on Tuesday.

Really looking forward to seeing him and Paul on Wednesday, next week; it’s going to be very good to see these two dear friends again and so soon now.

Nice they want to spend some time with us during their stay here, nice to have people stay with us again.

Feels so good, makes it feel like it used to, hate the way the limitations imposed by being so disabled has stopped us having as many people staying as we used to have before my MS diagnoses.

Maybe it is not really true and just how it makes me feel, feel like we were always more hospitable before the MS, notice we very rarely have people round to eat with us.

Perhaps we will start doing that more again, I shall discuss this with Richie, think it would be nice to invite friends to join us for dinner.

Invite Anne and her son Okhai, and also ask her to come and cook here again like she used to do.

Be nice to do that, make it a weekly thing, good for us all and stops us getting too private and reminds our friends locally that we do like to see people come to visit us.

This afternoon my cousin Katrin will be here to visit, our spare room is all sorted out and ready for her to stay.

It looks so much better than the last time Katrin visited us a year ago, now we have replaced the uncomfortable sofa bed with a queen size inflatable bed.

Richie has got all our bits and pieces that were lying around the room up onto shelves he put up this week.

He also hung the gorgeous gold curtain over the double glass doors and has put a nice light in there plus a little hand made Moroccan carpet next to the bed.

He will get some flowers to complete the room ready for Katrin arriving at 14.00 this afternoon.

Friday, September 10, 2010

Special Memories.

Jan Van Eyck.

Was hoping that today would also be a nice sunny day like yesterday turned out to be, sadly the cloud cover which returned at the end of the day yesterday is still very much there.

It does not look like the clouds will lift today although I will be optimistic all day and hope that the cloud cover gets broken.

Be very good if the clouds would lift for tomorrow so that it is good weather for a change for my cousin Katrin’s visit.

Would be nice if the weather were pleasant tomorrow so the two of us can go out together; be nice even if it were just to the café overlooking the canal around the corner of our street.

Richie has a very busy day today, shopping and getting our spare room ready for Katrin tomorrow.

Also for Gareth and Paul next week, exciting that we will have friends staying with us for three days next week.

Really looking forward to their visit very much before MS we often had friends stay with us and it was always a great pleasure.

Our best Christmas was when we had arranged for a friend Cari, to stay with her young son Zebe and then another dear friend Jaya asked if she could stay too.

We did not have a spare room then, so Cari and her son had our bedroom and we slept on the sofa which turned into a bed and Jaya slept on our couch.

It was the best Christmas ever, we all got on so well, and we really enjoyed those ten days together tremendously.

Really a beautiful time so glad we shared that time with those three special friends, nice to have such a special memory.

Thursday, September 09, 2010

Life Has Many Bright Spots.

Jan Vanmeer.

Since Monday we have had rain all day everyday, Monday night the wind got up and howled all night, this kept us awake for a great part of the night.

The rain also started during the night and only seems to have stopped today; right now the sun is trying to break through the cloud cover which is like a thick grey lid over the city.

So not exactly sunshine right now, but it is brighter than the last couple of days and that is really nice.

The prospect of sunshine is really giving me a big boost this morning; it is great seeing tiny patches of blue sky appearing as cloud rolls away.

Hope that the weather is pleasant this coming Saturday when my cousin Katrin comes to visit us on her way home to France after a family reunion in Germany this week.

Brilliant seeing Katrin on Saturday, really looking forward to seeing her again, she is my favourite cousin.

Next week our friends Gareth and Paul will be in Amsterdam for 10 days, they will stay with us for three days which is really good, looking forward to seeing them.

We are going to have a small party on Friday, 17 September from 18.00 to 23.00, really looking forward to this.

Richie is going to make some tasty treats such as quiches, salads, hummus, fruit salad, cakes and homemade crisps.

Living in the here and now of a brighter Thursday and looking forward to visits from good friends.

Life has many bright spots for me despite my disability and pain and I enjoy them all to the full.

Wednesday, September 08, 2010

Our Love For Each Other Is Stronger And Brighter Than Ever.

The salmon fisher. By Eilif Peterssen (1852–1928)

Got good supportive feedback about yesterdays post, the feedback and support that I get as a result of my blog is really wonderful.

I have met so many good people through the blog world and been given such a lot of friendship and support by them.

Getting and giving support is so very important for us all, I am glad that I too can give support to others.

Important for me to feel part of it all and to be able to offer friendship and support to other people too.

Friendship and support creates bonds between people and that is of crucial importance for us all right now.

Especially when faced with something as difficult as an incurable disease or anything that ‘cripples’ you and stops you from living your life as you used to.

Having Primary Progressive MS has totally changed my life and Richie’s life, how we are living now is so different now.

The salmon fisher. By Eilif Peterssen (1852–1928)

Being able to talk freely about anything with Richie really helps me to cope with my MS and it also helps me to stop being anxious, panicking, worrying, getting fearful and even helps me cope with getting depressed.

It is very difficult dealing with the fast progression of my MS, it is very difficult to cope with, and luckily for me I have Richie helping me.

His love and support make everything easier and better, it is so good to have him close by, Richie is absolutely invaluable to me.

It is great to see and feel that this dreadful disease has only made our love for each other stronger and brighter than ever.

Tuesday, September 07, 2010

Even Closer Than Ever Together.

David Hockney.

Had a good talk with Richie last night about coping with my MS and trying to stop being anxious, panicking, worrying, getting fearful and depressed.

Richie told me that he found dealing with the fast progression of my MS had been very difficult to cope with.

We both realised independently that we can not do anything about what will happen in the future.

But we can do something about the present, we can both affect the moment we are in, better to try to have an affect in the here and now than a future yet to happen.

Much better than worrying about the future, it is not easy to stop worrying, being anxious and getting panicked.

MS is such an unpredictable disease that it is easy to get extremely worried by sudden fast progressions.

Especially like mine where I was still mobile at the end of 2006 and totally immobile by early 2007.

A scary rollercoaster ride for both Richie and me, neither of us knowing what would happen next.

Really difficult to not panic, the other thing that is difficult to control is depression, which is common with MS.

Only realised this spring quite how extremely depressed I had been, having to be in bed for so long waiting for my pressure sore wound to heal.

My defence mechanism for months in my first six months in bed was to say that I was ok at all times, which I clearly was not.

As soon as I posted in February 2009 about how I really felt and what life was like for me, then I got so much support from the blog world which was wonderful.

Helped me realise again how important other people are, how we all need support from each other, none of us can cope totally on our own, we are social creatures who need eacah other.

Starting to be open and honest about my situation and writing about it every day has been very good for me.

It has been invaluable in helping me to understand the whole process that I am living through.

I hope to be here for a few more years and will take it one day at a time and make the best of each moment that I have with my darling Richie.

So glad he is here with me sharing this time with me, which is a special time for us and brought us even closer than ever together.