Spring

Doesn’t sunshine make a difference to our spirits? I feel quite at peace with the world today and that’s why this is going to be short. It’s lovely to see our plants growing again. Some of the plants in our garden are quite old. I planted them soon after we moved here 34 years ago this June. The grass is growing too and will need cutting soon. This was my job until last year but no more – another for Liz’s ever increasing list. For me it’s another brick in the wall as I increasingly become more deskilled. Apart from this I’ve not had a bad week. We went to see ‘The Artist’ in the small cinema in Skipton, the film tipped as the best film of 2012 after many Oscars and Baftas. Although we enjoyed it, it didn’t really live up to expectations. By contrast ‘The Exotic Marigold Hotel’ we saw the previous week was really entertaining and we would go and see it again. Maybe it’s a generation thing?

I’ve been to Harrogate twice this week. On the first occasion we had a trip to Harlowe Carr Gardens with Daniel who we were looking after for the morning. I’m pleased because Daniel is getting more relaxed with me and yesterday we played ‘Chicken Out’ together! When he couldn’t understand me he shouted ‘Repeat yourself’ – he’s not three until next month.

I’ve not experienced the NHS this week. However my Australian cousin, Penny, who you may remember wrote in my blog when she was staying with us in November last year, has been having a torrid time as this week she had a mastectomy after a routine test when she got back revealed a small tumour. I am sure that you will want to wish her with me all the very best. None of us know what’s behind the corner.

P.S. for Ben, my Australian nephew. Webber did better today but still no podium.

Is it Spring?

 

Hello everybody, I hope you are keeping well.  I am looking forward to my day as this morning the Formula One racing started in Melbourne, Australia.  I love the razzmatazz of the events and the technical expertise combined with human skill.  Watching motor racing has been part of me since about 16years old when I went to places like Silverstone and Mallory Park as a marshal.  My eldest brother Peter used to take me to the events.  He was mad keen on restoring cars so there was always one available to take us - I don't know how he put up with me.   My trainer at the gym is very keen supporter of Formula One too so on Monday when I go he will no doubt want conversation!

I have been busy recently due to external examining at Lancaster University.  I would recommend the CETAD team if you are thinking of getting a degree later in life.  They run an APEL system that is accreditation of prior learning and experience, as well as individually negotiated learning contracts.  It allows you to pick and choose which modules are best suited for your learning needs.  They are also a hard working and caring team who treat me well.

I went to my GP on Friday morning, the first time for nearly a year because I normally use Internet or telephone to talk to her.  She is not the most popular doctor in the surgery.  Perhaps because she is straight to the point, and has no time for time wasters but I like her.  She does have some knowledge of MSA which helps enormously, so we got down to business quickly.  She went through the letters from my London consultants and my local urology consultant and looked at my left foot which has been causing me problems – I get a dull ache in three of my toes all of the time and sometimes in my heel.  I have to see a podiatrist and have a swallowing test because the last one was a year ago. However, in the past I have had tests, for example, a blood test to check my kidneys are okay but two and a half months later I still haven’t had the results. I assume no news is good news. My medication remains much the same.  Liz went with me for the first time – my good shepherdess. We all agreed that I would probably be in a wheel chair by now if I didn’t go to the gym – the routine is paying dividends.

Things are getting more difficult to do, I can't walk very far, my bowel and bladder are erratic and I find it increasingly difficult to speak  so it is not surprising that sometimes I get emotional and feel down but spring is in the air. We haven’t got any lambs in the fields around our house yet but the daffodils are out on the side of the road and the birds are busy making nests. The longer days and sunshine we’ve been having recently lifts my spirits. Liz and I sat outside our favourite café in Skipton and drank hot chocolate and watched the world go by after my doctor’s appointment this week. How about you, what’s giving you a buzz?

Making MSA understandable

 I think I now have the beginnings of an MSA dictionary thanks to Simrit, a new qualified doctor and a good friend of Grace’s from St Andrews University days.  It is not complete yet as I have found some more. If you have a contribution to make, it can be funny too, just send them to my Facebook account.                   

It is interesting that all the terminology in last week's blog and explained here was found on one side of an A4 sheet of paper in a letter to my GP after a consultation in London with an honorary clinical assistant to Prof Andrew Lees.

This week’s exciting news is that I'm now the proud owner of a blue badge – as yet untested.

I have had a couple falls this week but my bowel has been causing me the most problems.  I also have not been my chirpy self, rather flat.  Having lunch with Ian yesterday broke up the tedium of the week as I was able to get out of the house - I feel more and more housebound.  Ian is such good company and  lunch with him was a real tonic.

Ian also gave me a detailed account of a neighbour who is suffering from bowel cancer and being treated at Airedale Hospital.  It was a similar story to mine and made me laugh.                                           

MSA TERMS ORTHOSTATIC  HYPOTENSION: Basically it’s the dizziness/head rush u can sometimes feel when u stand up. Literally it’s caused by the drop in blood pressure when u stand up. Orthostatic means standing up and hypotension is low blood pressure. PRE-SYNCOPAL EPISODES: syncope means fainting. Pre-syncope is the bit before u faint so kind of the same as above - dizziness or whatever other feelings u get before u faint. REM: rapid eye movement. I think. Don’t know what context it is in though. Its best described I guess when u are in the state of sleep and your eyes move rapidly...it’s in the name really. MYOCLONUS: myo means one muscle and clonus means twitch. It’s an involuntary twitch of a muscle or muscle group . ANTEROCOLLIS: l admit, I cheated and googled it....ha ha! It’s the characteristic head/neck bent forwards that you see in people with Parkinson's disease. DISARTHRIC: Disarthria is difficulty with pronouncing words - you have to be patient. A person with Disarthria is said to be disarthric. CONGENITAL STRABISMUS: Congenital means you are born with it and strabismus is an eye disorder where both eyes don’t line up the same way. DYSPHONIC: ANTEROCOLLIS: BRADYKINESIA: MINIPOLYMYOCLONUS: MYOCLONUS EPHEDRINE: MIDODRINE

                                                                                                                                                                                                     

                                                                                                                                                                                                                                                                                                                 

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.