An old friend and a blue flag

Joanna and I met on Saturday at the exhibition of my pots in the Craven Museum, Skipton.  We have been friends for a long time and I was her art teacher for a short time.  Joanna was one of the first to sign up as a follower and always responds to my postings. This is encouraging because it tells me that at least one person is engaged with my blog.  David her husband, brought along some very good photographs he had taken of a Jenny Bevan pot we gave them for their wedding present thirty years ago.  It is similar to two of our pots which are on display.  Joanna  is a lovely person and a pleasure to be around.

I had another brush with the NHS this week when I went for my walking assessment for a blue badge scheme.  I have applied for the badge because it offers preferential parking for disabled people.  I have not bothered to apply until now because I thought I didn't think I would be eligible because I can still walk a reasonable distance.  Anyway, I went for my test in Skipton General Hospital Physiotherapy Dept.  As is usual when you arrive and have registered at reception you are told to sit down and wait, in a corridor of course.  As I waited I started looking around at the walls and doors.  The vast majority of the notices pinned up were about missing appointments.  I could not work it out, if you are missing an appointment you'll not be there to read the notices!  The ‘not in a hurry’ mode seemed well embedded - BBC Radio 2 drifting from one office and chatter from the other.  I really felt a spare part.  When I got in to see the physiotherapist she did not know about MSA.  In fact she hadn't a clue, although there was considerable detail of my case in the application form.  She had not got a copy of it which I found surprising.  She was nearly in tears by the time we had finished, but she only writes the report the decision is taken by the County Council.

I do not understand the descriptions of my condition in the letters I receive from the consultants so I'm going to start a list and ask anyone out there who knows about the following terms to reply with simple short definitions in plain English. Of course liberal interpretations are also encouraged from anyone who feels a creative urge.

• orthostatic  hypertension
• pre-syncopal episodes
• REM
• Myoclonus
• Anterocollis
•  Dysarthfric
• Dyshoni
• Congenital strabismus

If it is any good I will make dictionary for us to share!

Mum is 94

What a lovely day it is today.  The sun is shining, a blue sky but it is cold.  It is a walking day for some!  It is reminiscence time for others. It was my mother's birthday last Sunday; she is 94 years old, which is a remarkable age.  Liz made a birthday cake and we went over to Sherburn in Elmet, where she lives and which is about an hour and a half journey from us.  She had lots of flowers and birthday cards and several people had popped in to wish her well.  We started to talk about the past and for the first time heard about her work during the war.  I knew she was a cook at Girton, an all women’s College of Cambridge University but what I didn’t know is that in the evenings she worked voluntarily for the YMCA.  She also said they made bread every day at the college for the town.  During that time she met my father who was a theology student at Queens College and a fire watcher at night.  It is interesting that she started to talk about the past as she has always been a live for today person.  When I was recounting this to a friend on the way to the gym she said that after her mother's death she had realised that there were lots of gaps in her family’s knowledge about her mother’s life and work.  She regretted not taking more time to encourage her mother to talk about her past.  What's this got to do with MSA you might ask?  Well MSA is not genetic in my case.  With a mother like mine life goes on with meals to prepare, the shopping to order, clothes to wash and dry, meetings and the weekly luncheon club and letters to write there’s lots to fill the day.  For me there are lots of things I want to but can't now do and the gradual loss of control undermines my confidence.                                                                                                     

 I think it is to do with timescales; I am time-limited whereas my relatives and friends are not.  I think that leads to different priorities, taking advantage of the mobility I still have left for as long as possible is my priority.  I have no idea when MSA is going to strike another blow it has already done a pretty effective job with for example; not being able to reach the telephone in time before it stops ringing and making sure my voice is not working when I need a conversation.  The most recent challenge has been to do with my feet and toes.  Apart from being cold, which is to do with low blood pressure, I have recently had almost continual dull pain in my left foot toes and they are sensitive.  To make life more complicated, my toes are changing shape and as a result my shoes no longer fit me.  So I have been donating the old ones to Oxfam and bought myself a new pair of Loakes leather slip-ons.   They are smart, stylish, and comfortable and I can put them on myself!

On a positive note, my oldest friend from school days has been in touch.  He lives in Sydney, Australia, and runs his own business very successfully selling second-hand laboratory equipment. Per and I go back a long way and have managed to stay in touch since leaving school a long time ago.  I probably have not seen him for around six years now.  The good news is that Per is planning to come to the UK at the end of August with his two daughters.  He will be followed by my brother Pete and Angela so it looks like it’s going to be an Australian autumn, it will be very nice to see them all.      

Some other news is that I have a new specialist physio based at the local hospital and she thinks my regime is okay.  She gave me a couple of new exercises to do. One is using a gigantic, rubber band! More importantly, she has agreed to talk to my trainer at the Devonshire Arms Health Spa to revise my gym programme.  I've been doing the same thing there for about 6 to 8 months now and bored to death so that will be a good thing.

P.S. No change in scores on the doors with regard to our four legged small friends.

The Reform Club Drinks Reception

A terrific week for me with Grace our youngest daughter getting an internship at the Brunswick group in New York which is paid and starts in March and if she does well they have said that there is a possibility of employing her.  Congratulations, all the hard work was worthwhile.

The drinks reception was a great success at the Reform Club and made my week.  Around 60 people attended representing virtually all of my working life and I think that the connection between    everybody was me.  Eve, James and Liz were brilliant on the night making sure that everything ran smoothly which it did.  I had a great time catching up with people I’d not seen for a long time and meeting some new people such as Priscilla who is a fellow MSA traveller.  She is a lovely lady, a lawyer by training in a wheel chair for a month now and with an MSA soft voice like mine.  We have our medical consultants, Prof Lees and Prof Mathias in common.  I thoroughly enjoyed talking to her and look forward to continuing our conversation.  It helps to have somebody to touch base with who is going through the same thing.   

I am not going to try to describe the evening as I would fail abysmally so I will reproduce my notes, which  Eve read out for me and here’s my Facebook site  where there is an album of  photographs.

http://www.facebook.com/media/set/?set=a.3238277156976.161797.1268182028&type=1&l=67c8614c84

The notes

·         Since being diagnosed with MSA I have inevitably been reflecting on what it all means and how I CAN CONSTRUCTIVELY USE MY TIME.

I want to give something back in the time available to me

·         What better than to buy a few drinks for my mates, friends,  associates and co workers  in my second home, the Reform where I have been a member for over 20 years

·         I have lots of happy memories of meetings, discussions and entertainment so that‘s why I chose the Reform for tonight and the men have to wear ties!

·          I wanted to celebrate working with so many talented people over my  career and say thankyou and long may it continue

·         Then  MSA came along and turned my life and my family lives upside down

·         MSA  can attack anybody anytime, more men than women, organic food or not

·         My knowledge of MSA was zero and so it was for most people I talked to.  Interestingly my GP who did some of her training at the National Hospital for Neurology And Neuroscience had met MSA patients

·         It’s always confused with Parkinsons, it’s big but less deadly brother, and a lot of it is to do with the   autonomic nervous system, hence an invitation to Professor Mathias  to tell us more tonight          

·         They have  designed amazing tests such as the tilting bed and freezing hand routine [see my blog] which I have done 3 times and survived

·         So by the end of tonight you  should have a better understanding of MSA

·         As a researcher I have taken an interest in what is happening and participated in trials but there is a lot to do in the MSA field and this is where we can help -  I never thought I would hear myself encouraging support for research in other than my own academic but there you have it

·         That is why  John and I are donating the  royalties of our latest book ‘Understanding Work Based Learning’  to research in this field  

·         For me this is a night to remember I just want to thank my family for all their support particularly Eve and James for this event and I am looking forward to continuing to work with you.

What some people have said                 

What a marvellous evening last night, which I was delighted to attend with Bruce's help.

I met your brother (Jeremy) and had a great chat about snow, and the unexpectedly vicious politics of parishes (now I'm a village councillor myself).

Many Dept of Health folk - some I knew, others were previously just names - came over. How warmly they spoke of you, and how positively they responded to my own work (again thanks to Bruce and your momentum behind UKFHI).

And, of course, I heard your consultant speak very lucidly on MSA and met you too.

There was much in the consultant's talk that I relayed and resonated with my Dad (uncontrolled blood pressure after eating/breakfast). I appreciated first hand your ongoing challenges. The UK rare diseases strategy, mentioned earlier, may be an additional string to your consultant's bow.
It was good to see you and Liz and Eve at the Reform Club last night.

It was very good to see you at the place where we met many times to discuss your ideas for cultural and educational organisations. I was always inspired by your cutting edge ideas for advanced creative  arts organisations. I will always have fond memories of our meetings in the library, the restaurant and the foyer of the club.

 Eve`s reading of your letter was very helpful indeed to set the tone for the evening. Eve clearly has your ability to present the issues in a truly professional manner

The consultant’s presentation of the issues in relation to MSA was both educational and helpful. Research seems to be evolving all the time to find new treatments or health regimes to combat MSA.

The new drugs that are being developed in the USA may lead the way for the future treatment of MSA.

Little Nipper 2 - mice 0

Trying to capture mice has been the highlight of the week as we don’t have a cat.

War was declared largely because they had the audacity to get upstairs into our bedroom for the first time in 33 years.

There was instant activity, Liz tearing about the house for the one and only mouse trap which we have  or imagined we had, which served us well for many years. It wasn’t to be found so new military equipment was needed.   So it was no surprise for Liz to return triumphantly not just with one but three.   We really did mean business.

Now it was down to choosing which cheese to use and how much, it was decided a firm cheese a small amount, our ammunition was primed and ready to go!  The key tactical question was where to put the primed traps.  Of course stop being silly, where we found mouse activity, that’s right, got it. 

So it was a waiting game. Had we got it right because mice can be very unpredictable?  Liz had her usual bath and like a guard checked the traps before getting into bed.  Sure enough we were awakened at about 3am by scratching noises and then nothing. We woke up as usual around 6.30am.  Í had forgotten about mice and as I was munching my pills with a cup of tea there was as shriek of joy - we had killed number 1. Number 2 came to the same fate the following night and we don’t seem to have had any visits since, perhaps a lull in this phony war.

 Grace our youngest daughter is going back to New York tomorrow and we will miss her. She is such good company, a very good cook [her cottage and shepherds pies never to be forgotten], and a great driver and remarkably focused.  She will get what she wants in due course, watch out Reid!

  The Reform Club event is on Thursday this week and we are looking forward to it. Eve, our eldest daughter, is in charge and she will be brilliant.                                                          

Valuable time

On the whole I have had a reasonable week, one little fall of no consequence; my bladder and bowel has behaved itself more or less; eating has not been too troublesome, but saliva remains unresolved.

The Botox treatment was meant to be: ‘the gold standard for reducing saliva’ in the industry.  It is administered every two to three months at Airedale Hospital and means yet another£2.50 parking ticket.  Even then you may not a place to park, it is always chaos, and you can spend as much time trying to park as you do seeing the consultant, it's ridiculous.  It is even more annoying when you have eventually found somewhere to park got to the clinic, only to find after waiting forty minutes that it's the wrong doctor running the clinic and he can’t administer the Botox. All this after cancelling my appointment twice!  So you’d think they would have booked me into the next clinic with the consultant, the top Botox man and not the junior member of his team that saw me. 

Another frustration was that I arrived at the time given to me in my appointment letter and when I eventually registered with the nurse she didn’t mention that the clinic was running late. There were several patients sitting in the corridor minding their own business waiting to see the doctor.  Patients were arriving after me and getting into the consulting rooms before me which is always annoying when no explanations are given.  Why give a precise date and time for an appointment when everyone knows clinics run late.  This is not putting patients first or valuing their time. It strikes me that hospitals could learn a lot from the railway companies who allow more minutes in stations where trains stop in order to ensure that they arrive at final destinations in time.

I have said before in an earlier blog how impressed I have been in the internet drugs service I receive from my GP and Lloyds the chemist, but this time it broke down badly.  After a couple of phone calls to the practice I still couldn’t order my drugs online, so we resorted to the traditional method and took the paper subscription to the practice to process.  When Liz went to pick up the prescription it was incorrect, it contained the newest drug only recently recommended, not my regular order.  So the pharmacist said that she would sort it out with the practice and the prescription would be delivered that afternoon. She knew Liz would be in our local church as she runs the babies and toddlers group there on Friday afternoons, and that’s where they were delivered by the courier- great service Lloyds! [The courier had never delivered a prescription to a church before.]

To end this week we found mice activity in the garage.  They have been feasting on bird food.  We did not think much of it so put the food in a lidded box.  That should have been it but no I found five peanuts and other bits and pieces in one of my trainers in the back room which meant they were now in the house. This was confirmed earlier this morning at around 5am when we heard noises in our bedroom.  Liz was not amused.  War has now commenced with newly bought little nipper traps.

I had lunch with Ian, a long-standing friend from Skipton yesterday at the pub in Appletreewick.  It was lovely, good company, good conversation, good food and a convivial atmosphere.T to both his house

A Personal Collection

It has been a good week with the opening of the Contemporary Ceramics: A Personal Collection at the Craven Museum, Skipton. The personal collection is mine acquired over at least 30 years. It is the first time the pieces have been exhibited in public as a collection so I am really pleased that they are considered worthy of being shown to the public as a quality collection. There were lots of friends, family and colleagues at the preview evening on Wednesday.  I appreciated the special effort Mark and Eve made and as Grace is staying with us at the moment the whole family was involved.   The house is rather empty with nothing to look at when we get up in the morning!  MSA tried as usual to mess things up by     upsetting my bladder and bowel but didn’t quite succeed.  There is a catalogue to accompany the show that you can order from the museum and/or me. Here are some quotes which say it all for me.  I also recommend looking at my face book site because it has a photo album by Grace of the opening.

An interview with the collector

How did you start as a collector?

I didn’t collect things as a child but I did get the collecting bug when I was working in Freetown, Sierra Leone in the early 1970s. I had trained as an art teacher and wasn’t ready to settle down in an English school so I applied for a post sponsored by the Overseas Development Agency and had the choice of either going to Bermuda or Sierra Leone. I chose Sierra Leone because it was far more obscure and the chances of going there otherwise at that time were nil. Whilst there I bought four masks mostly because I loved them – they were so much part of the country I was in and they now hold special memories of my two years in Freetown.

I had been to art school and when I got back to the UK I worked with Yorkshire Arts for a while so the collection began partly because it was opportunistic – I knew I wasn’t going to have this chance again of seeing the pieces of work and working with the artists. My wife Liz, who was also a teacher in Freetown, and I chose ceramics rather than paintings partly because of the cost but also because we wanted to support the potters. I couldn’t believe the number of good potters that were around in Yorkshire and how good so many of them were, for example Jane Hamlyn and David Lloyd Jones. They were making terrific stuff [Jane still is], salt of the earth potters, and very modest with it. Peter Robinson was another guy producing very good work at the time. He was good at making things happen but eventually moved on to more teaching and community work.

The ceramics collection started with a piece by Catherine Beetham - a modest circular container with a lid to keep things in, from the Marble Street Workshop in Hebden Bridge, which had just been set up by Manchester Poly graduates. In buying this I was putting my toe in the water – it didn’t cost too much and it looked nice. I gave it to Liz to keep her bits and pieces in.

We began to put £10 a month away – quite a lot at the time – to buy work we liked.  We didn’t have a plan. We had a pot of money and if we saw something we liked we could just buy it. It wasn’t always ceramics as there were some really good photographers, including Martin Parr, starting out at the time and beginning to make a name for themselves. Any extra money I made from freelance consultancy work we put aside and treat it like a bonus to go into our purchasing fund.

We didn’t think about collecting as an investment. Bonhams were having two auctions a year of contemporary ceramics so I used to get the catalogues and look at everything. All the prices in the auction room were much lower than the prices I had paid. The pieces had devalued in price but when I learnt that I felt quite liberated. The price didn’t matter and anyway they were only selling particular people – secure bets like Lucie Rie and Elizabeth Fritsch - so I was happy to buy things I saw that I liked.

I began to realise I was buying on a regular basis. The kids started to ask me when I was going to buy the next pot and increasingly I realised I was getting it about right so I drew up a hit list which I kept in my filofax – a list of potters names, and eventually acquired a piece from all of them. That’s when I bought the more expensive pieces – Britten, Baldwin, Ward - but I’ve never regarded collecting as an investment. I think that was the tipping point. I realised I had built up an important collection of its time.

All of the pots we own have little histories and look good in our converted chapel. The histories make them interesting in another dimension. Transporting some home was particularly challenging, for example the very large hand coiled Monica Young which our children have played in.

I have always been keen to support galleries - Godfrey and Watt in Harrogate was one of my favourite places – they were a classic intermediary. Alex Watt worked closely with a small number of artists and craftspeople building up a close relationship with them thereby ensuring that he always got their best work. Alex also knew his customer base and was very good at matching the two and often his exhibitions were sell outs. This to me is success – very difficult to do but if you get it right the cash gets to the artists quickly and regularly and builds up their reputations. In the scheme of things agents are often overlooked but if crafts are going to grow as a creative industries sector so must the intermediaries.

What is left to say apart from,  go and see the pots for yourself,at the CRAVEN MUSEUM, SKIPTON. The exhibition is there until 7^th May 2012.

Secret Stories

I really don't feel like writing this weekend so I’m sorry if this week’s blog is dull.  It has been a very busy week with preparations for the exhibition and work on the Reform Club event.  First things first, my body has played up badly this week with falling for the first time in the shower, which was a bit nerve wracking for Liz and me.  It means I can no longer shower when there is no one around just in case.  It is yet another nail in the coffin.  I have also gone off my food recently and have already lost quite a lot of weight; I yearn for tasty morsels that are easy to eat and to drink a pint of beer without thinking of the consequences!  As they say what goes in must come out and it does unpredictably, which is another progressive loss of control.  However, my health problems seemed quite insignificant when I received a note from a very long standing colleague and friend;

I am so sorry to hear your news – but you sound very courageous. It is vitally important to keep ones spirits up as I know personally, having had two cousins die far too early  due to illnesses.          

I am afraid that I won’t able to come [to the Reform Club event] due to my own state of health which has been rough, but nothing like as rough as yours , over the last two years. One thing seems to have followed another. I contracted MRSA in hospital when I gave a kidney to another cousin, who would have died without a transplant. I was then diagnosed with cancer, which I hope has been eradicated after treatment. This was followed by unexplained back spasms over an extended period and now I have a problem walking which I hope may be treated through the NHS taking a mould of one of my feet and making a support – tiresome , but hardly more than that, but going to large gatherings , exhibitions and walking any distance are out for the time being. My back completely seizes up if I stand in one place for more than a very short length of time – nor can I sit for very ...  Long without problems with my foot! But although I am frustrated, I have a strong belief that things will improve!

We can't even hope that things will improve because we know they will not get better.  We are in the business of managing decline in a gentlemanly fashion.  I feel privileged to be able to share a little bit of this person’s life which would not normally happen in the daily cut and thrust of life. I'm sure that there are plenty more where that came from and ones we don't know about very near home.

Enough of that, it was quite traumatic on Wednesday, when our pots were taken away to the Museum for the exhibition.  They took away about 40 of them collected over 25 years – Liz managed to keep back a few on the grounds that she bought them with her own money. Nevertheless, our house now looks very empty, but I'm looking forward to seeing the pots in a new environment.  I never thought I would have a collection worth exhibiting as I started out simply wanting to support creative people in Yorkshire!  The exhibition runs from 19th January 2012 until 7th May 2012 and is called Contemporary Ceramics: Personal Collection, so you have plenty of time to see it and paste your comments.

The Reform Club event on 9 February 2012, starting at 6.30pm, is not attracting enough people.  We need sixty and at the moment we have about twenty positive responses.  The event is a networking opportunity to hear about MSA, from one of the leading specialists in the autonomic nervous system, and a little bit about my book, the royalties from which are going to support research in this field.  If you can help or want to come or send a rep. call me on 07810 200202 or email me simon@croodhouse.freeserve.co.uk