Being an Outcast and Leper

I think I know what it is like to be a leper and outcast, as soon as I tell colleagues about my illness communication ceases to exist.  It is hard to take, for example, an academic colleague who I have known for around 25 years and for whom I have acted as a referee and was a founder member of his journal’s editorial board, does not reply to e-mails you begin to wonder what's wrong with you.  The, disease is a physical business and does not diminish my knowledge and experience.  I can only conclude that the lack of communication is in fact closure because he doesn’t know what to say to me, but it would be good to know that was the case.  Other examples include an experienced senior manager with a deep interest in vocational education. We worked very closely for five or more years but he is not talking to me anymore and no longer thinks of me in terms of business opportunities. Nor does he just pick up the phone to find out how I'm getting on.  Even my best man is ignoring me; it upsets me as I become more and more isolated.  I already sense that my opinion is not valued quite so much with family and friends. 

Being referred to in the third person as he or him is in my view dehumanising and degrading, after all, I do have a name.  An example of this is when Liz and I went to a coffee fundraising event for a very large charity.  We had just settled in with our coffee when we were approached by one of the professional staff of the charity, who assumed that Liz was my carer and started a conversation with her about me with me there!  Even when Liz asked me to comment on the conversation this professional lady continued to ignore me!  It was as though I was blind, deaf and dumb.  I have to say this is not the first time, doctors and nurses do this frequently.  Telephone conversations sometimes fall within this category that is talking the about his condition when present. 

Enough of this, it is Christmas time!  Yesterday we went to visit Liz’s dad who is 86, lives on his own and is a legend in his lifetime as far as our kids are concerned. He never throws anything away and is a source of information about the village where he has lived all his life and Liz’s family history. Tonight we’re going to a carol service with mince pies and mulled wine afterwards.                       

Happy Christmas to my bloggers, fat or thin, big or small, hair or no hair.  Have a good time with family and friends.  I will not be writing my blog over the holiday period.  Sorry about that but I want a drink or two G&T of course and some chat. 

My crafty side

When I was thinking of what I was going to write my brother sent me a video clip which I have included here.  It made me smile. I hope it does the same for you. We all need a smile in the morning to start the day to get the face muscles moving in the right direction!  Access might be immediate on opening the package if not try this; right click on the title highlight package object then there is another popup menu, choose activate contents, good luck. drill_team_for_retired_guys1.wmv                                                                                         

Many people have read last week’s blog by Grace, by Monday 109 visits which I don't think is bad at all. In fact, we have had several messages showing appreciation for the blog and passing the address on to other people which is what we want. With that in mind we have now made some progress towards the Reform club drinks reception fundraiser as Prof Mathias has agreed to be the guest speaker.  He is the autonomic nervous system specialist and works closely with Prof Andrew Lees.  They are both my consultants. The invitations will go out at the beginning of January for the event on 9 February 2012.      

 The other exciting thing that is happening is that my collection of contemporary ceramics built up around 20 years is to be exhibited in the Craven Museum for three months.  It will enable me to see the pots in a different light and Liz to clean the shelves and live in a half empty house.  There is something    satisfying about this, a celebration and closure of part of me. The exhibition starts on 19 January with a preview evening on 18 January 2012.                                           

That leads my thoughts on to the wider crafts community.  Yesterday we went to King Street workshops in Pateley Bridge for their annual Christmas open workshop event. We particularly like to see Debbie Moxon, a jeweller who mostly works in titanium. We met each other 25 years ago in the Otley workshops when I was working as the Visual Arts Officer for Yorkshire Arts, which was at the time the regional arts development agency for Yorkshire. We have purchased her work periodically over that time. Nothing is too much trouble for her including commissions and repairs.  What I like about visiting people like Debbie in their workplace is that you can support a small business producing beautiful things at a marginal cost of High Street shopping.  Craftspeople like Debbie are also an integral part of the creative industries.  They are largely ignored because they are lifestyle businesses and have little or no potential for growth.  Anyway Debbie was very excited because in the New Year they are going to strip out their workshop and rebuild it completely to celebrate their twentieth anniversary in Pateley Bridge.

 There are also a very good felt maker, a maker of exquisite hats and glass blowers on the site.  The glass blowers, Sanders and Wallace, were able to set up 25 years ago because they received a Yorkshire Arts grant recommended by me. They have been terrifically successful ever since.  They make enough money to have the kind of lifestyle they want and make beautiful glass perfume bottles, vases and lots of other things.  Watching them hand blow the glass is mesmerising and so skilful. I support lifestyle businesses because at the very least they are employing themselves, buying goods and services so consequently making a contribution to the local economy.  Do you agree? In many ways I envy them because they are able to continue their creative work and give people pleasure and be valued long past retirement age.

                                                                                                                                                                              

Grace

This  blog is special as my youngest daughter Grace happily accepted the invitation to say what she thought about me and my MSA. Here it is.

When my dad asked me to write this I felt a little unsure of what I could write and how eloquently I could express myself.  I thought about it and thought if it can help him then it will probably help me as well. I also could never say no to him!

I am currently living in NYC finishing my MA in Corporate Communications. This was something I committed to in late 2009 and was to a small extent a method of moving to be with my American boyfriend who I met in St Andrews. When the time came to make the move I was pretty uncertain and if it hadn’t been for a lot of my friends convincing me that, even though I loved my dad I couldn’t put my life on hold for him, I wouldn’t have gone. They also were probably right when they said he wouldn’t want me to anyway!

My friends have been a great support to me in terms of being an ear to listen to my concerns and feelings, but I wasn’t able to tell them, apart from the girls who lived with me at the time, about my dad’s disease for a full ten months. I wasn’t really ready to accept it and I guess that was reflected in my silence. I am not very good at expressing my emotions; in fact I am fantastic at bottling things up, this works to my detriment and my emotions usually surface in an unusual way. Reid sometimes gets screamed at for not cleaning when really it is a combination of homesickness and frustration.

My dad’s illness frustrates me because it just isn’t fair. It is not fair on him; a man who worked so hard his entire life does not get the active retirement he always wanted. It is not fair on my mum because she has to balance her worries about my dad’s safety with his need to be as active for as long as possible. In my case I don’t think it is fair that just when I really began to develop an adult relationship with my dad and really appreciate him as an equal, with similar interests, he is no longer able to share those interests with me. I am still working at getting over the unfairness of it all.

When I finish my MA I have a decision to make as to whether I move back to the UK or stay in the US. At the moment it is very much up in the air and I am leaving the decision to those who are willing to employ me. I just know that when the difficult times do come I don’t want to be thousands of miles away across the Atlantic and I would be willing to drop anything to be closer to family.

This probably hasn’t been a very cheery blog entry. What I can say is that Dad’s illness encourages me to have more fun, explore more places, take a few more risks, and care less about the opinions of others. It made me realise that you never know what is around the corner and that we should all try to live our lives to the fullest while we can.

Thank you for this, There is a lot we have never talked about so we have some catching up to do.

Dignity

 I am finding it difficult to know what to write about this week so, I think this could be a bit of a jumble of thoughts.

I often dream that one morning I will get out of bed easily and as smoothly as Liz does. I wouldn’t struggle but would walk down the stairs without holding on to the banister like grim death and I wouldn’t need the buttons I can't do done up done for me.  Spontaneous movement is completely out of the question - chasing Liz around the house is no longer feasible.  It is like eating, I can no longer eat without being anxious about choking and spilling.  I take easily twice as long to eat than a normal adult would.  This has changed my attitude to menus not just avoiding beefsteak and that kind of stuff but calculating how long the food I choose will take to eat.  Cutting food is increasingly difficult as MSA takes control over my micro movements.  It seems like I'm doing the motion okay but there is no power there.  This is a familiar feeling because when I fall and try to get up and make the right motion there is no power and I know I am strong, particularly my legs!  I think this is where the disease takes over and messes up the communication between the brain and the appropriate place in the body that has got to do something.          

                                                     

On top of this I have to cope with saliva control and voice volume.  My voice has changed out of all recognition and it saddens me that I can no longer have normal conversations because I am wondering whether people can hear me.  In addition the amount of saliva in my mouth makes it hard to formulate words and dribbling occurs.  The longer I speak the more croaky my voice becomes and the harder it is to get the words out.  All this erodes my dignity and the disease has the ability to destroy things I like the most, mountain walking, eating good food, having great conversation and sex.

I have a yearning this week to know more about what tricks and techniques other people have devised to cope with MSA.  Is this a sign I am now ready to join a support group, God forbid, I'm not that type of person.   I have to admit though I did go to a Parkinsons support group very early on, and came back demoralised because I saw what was in store for me and I didn't want reminding about it.  They were very kind and considerate people but not for me yet.  I am really looking for practical down to earth solutions to cope with MSA problems and confirmation that I’m on the right tracks.  One of the great mysteries for me is knowing where I am on the journey and how I am doing.

A surprise

This has a special week because I went to the UVAC [Universities Vocational Award Council] conference in York.  It is a two-day conference focused on all aspects of workbased learning and is a well established part of the HE landscape.  I set it up in the first place and organised the event on an annual basis for nine    years so that is why attending this year was so special.  When I left UVAC I did not attend the conference for two years and only returned last year. I had such a warm welcome then.  It was a bit emotional for me because by then I had been diagnosed with Parkinsons plus probably MSA.  I thought it would be the last time I would be able to attend any conference let alone this one, so this was a real bonus.  

                      

There are not many conferences that focus on higher education vocational learning issues,  as well as acting as a platform for the practice in the field,  so this event is a good opportunity to catch up with people, hear the latest gossip and complain about finance, especially over dinner when the wine is flowing freely.  It has always been in York in November and a for a long time in the Royal Hotel right next to the railway station, an excellent location because there are frequent trains t o London and all the major cities.  York is a great shopping centre, so delegates can stay on to do some Christmas shopping if they wish.  We all know what conferences are for!

It was possible because Liz gave her time to drive me there and stay overnight, accompanying me in the conference so that I didn't do anything silly like falling over.  It worked very well, but I think Liz is more of the minder than a carer.  The journey over from Skipton was uneventful, the trouble began when we got the hotel and there were no parking spaces.  Liz temporarily parked the car and went to reception where a very helpful chap told her where there were spaces.  This parking business was of course entirely my fault because I don't have a blue badge!

I started to meet old colleagues and it was a good job that Liz had warned me that they would be quite shocked at how I looked, bent over walking badly and hardly any voice.  It was a little embarrassing to begin with for me and them.  Some were surprised that I'd made it to the conference.  I really felt that I was amongst friends and my disability was accepted and parked.  The hardest part for me during the conference was talking, and I think MSA is making sure that I am a Prof who can't speak, a very new phenomena.  So, question time in the workshops was utterly useless for me.  One-to-one conversations were possible but my voice soon faded and continuing was strenuous as I struggled to formulate the words and make myself heard.  Anyway, the chairs were comfortable, I didn't have problems moving around room to room, our bedroom was big, dinner good and breakfast great.  The UVAC team did an excellent job as usual - what we have come to expect.  The biggest surprise was hearing that my Middlesex University colleagues want to help me; I think we will get them involved in raising some money for research.

Although tiring this was a good thing to do and has encouraged me greatly to make the best of what opportunities are left. 

Exercise

It has been difficult to decide what to write about this week.  It has been an emotional up and down sort of a week. One of the highs was having lunch with Adrian, the Priest in Charge of our church, at the Elm Tree pub in Embsay just down the road from us in the next village. He has a useful habit of asking the right questions and listens.  We have a good time except it was spoilt this time because the pub had no baked potatoes, can you believe that!

 I fell down on Tuesday night putting the papers out for recycling, landing on the road and in the gutter at the bottom of our drive, which is on an incline.  As I was struggling to get up a car passing by stopped and the lady got out and asked whether I was okay.  I needed some help so she went to the house to get Liz and together they lifted me up. I cut my forehead which hurt a lot at first and I now have a large scab to prove it.  Liz has banned me from taking the papers out so another victory for MSA.  I think I am lucky because I have not hurt myself badly yet.  I could so easily have done on the end of the bed or the chest of drawers by the bed.  It is emotionally hard work to be restricted in this way because it is a sharp reminder of the disease and how it is going to eventually stop me walking.  When I allow these feelings to crowd in on me I feel low.  It doesn’t help being more emotional than I used to be as small things can trigger pessimistic feelings. 

One way I have found to counteract some of this negativity is going to the gym.  I try to go three times a week for two hour sessions.  I get very upset if I do not achieve three visits a week.  It is about the only space I can occupy and have some control over my MSA.  One of the interesting outcomes of this regime is that I have lost a lot of weight and built up muscles in my legs and arms.  In addition I do exercises to build up my core muscles twice a day to satisfy my specialist physio.  This is about the only way I can manage my MSA.  So I was scanning the Internet to look for information on exercise and MSA and found an American exercise routine on video so I have copied and included it this blog. Whilst doing this I came across an interesting clip, ‘A Bit about MSA’ which I have also included. They are as follows:

http://mershanti.blogspot.com/2010/05/msa-exercise-video.html

http://www.youtube.com/watch?v=2Ct7IHHtznc&feature=related

http://www.youtube.com/watch?v=wybc5UqKPkI&feature=related

 I would recommend getting hooked into exercise if you haven’t done so already, it does make a difference. I involved my specialist physio in making up my programme which was sensible.  So I do about 20 minutes of approved routines twice a day and the gym for 2 hours 3 times a week.  It’ s  a laugh really because I have avoided  the gym since leaving school  and been rather scornful about gym bunnies, look at me now the power of MSA!  I am sure that I am scoring lots of Brownie points with  my two daughters and son-in-law.                          

Shared Interests

My week has been calm, aches and pains yes, but things have been stable.  In fact I have quite enjoyed it.  I managed to get to the gym three times this week.  I can now do the leg press of a hundred kilos which I am very pleased about.  Much more importantly however, was the arrival of Penny Wright my cousin from Boonah, Queensland, Australia.  We are great friends and I have stayed at her house many times.  It is a beautiful place in a wonderful rural setting.  It was at a barbecue hosted by Penny when it was suggested by her physiotherapist friends that I should go and see a neurologist, in many ways, the beginning of my MSA story.  At that time she was recovering from breast cancer and the death of her husband, John.  I don’t know how she coped but it was an inspiration to me, here is a small part of her story.

It is lovely to be visiting Simon and Liz and seeing how life is treating them. I was thrilled when Simon told me he had embarked on a blog. I have read it from a personal and professional point of view (I was a physiotherapist) and have recommended the site to many. In fact, perhaps it should be recommended as reading for anyone entering the field of neurology, as it gives such an insight into life with such a disease as MSA.

Simon asked me to focus on how I coped, so perhaps you need a little background first, so you understand where the ‘coped with what?’ is answered. I was diagnosed with breast cancer in 2002 and two months later my husband John was diagnosed with an asbestos disease that we knew would take his life. Luckily, in the maelstrom of my first few weeks of treatment my guiding voice had told me to ‘start writing’. So I did and have not stopped my journaling since.

With journaling you do not need ability with language. All it takes is to put pencil to paper. And just write. Write about what is going on, what your thoughts are and whatever pops up. Looking back –usually a long time later – I am amazed at how many problems and issues are resolved, or the tack to be taken decided, in my journal. And poems have popped up like flowers, which have had their own benefits.

Then last year I was diagnosed with breast cancer on the other side – I’m hoping that with two breasts I have had the lot! – and the lessons learnt with Breast Cancer 1 were quickly refreshed.

Ripples are amazing. Watch them when you toss a pebble in a pool. They reach out and disperse into a wide area. This is not just true with water but I firmly believe, also with us. Our attitude doesn’t just determine our well-being but also that of people around us. On my office wall a quotation that says there is always a choice of attitude. So even in the worst of chemo – and it’s tough – I tried to remind myself ‘it too shall pass’!

Friends and family have been an integral part of my coping – emails, cards, letters, calls, anything that communicates loving. My children are scattered round the world, as is my wider family yet I have felt a strong buoyancy through their messages and support. I am really thankful that ‘communication’ has been one of my steering words over the years.

Best wishes to anyone reading this. Thank you Simon for giving me the honour of writing in your blog. I am sure it provides a ripple of sharing that you cannot imagine how far it spreads.

Thanks Penny. I hope this helps those of you who are facing similar challenges to Penny and me. Perhaps after reading this you can send a comment explaining how you do it.  I think family and friends will be top of the list! Why Is that?  I suspect it is to do with the intangibles such as one’s faith, love, care, a sense of belonging, values so often taken for granted. 

In Good Hands

It seems that I am being looked after by the leading international researcher of Parkinsons Disease and MSA.  Look at this article in the Parkinsons latest magazine.

A new list of the most influential international Parkinson researchers of the last 25 years has shown that UK researchers are among the world’s best.  Four Parkinsons UK funded researchers feature in the top 10, including Prof Andrew Lees from University College London in first place and a further four made the top 50.  This list was based on how many times a researcher’s work had been cited by others in the field.  Research published by Prof Lees has been the most cited by other scientists since 1985.  His work has been funded by Parkinsons UK throughout his career, including research related to the development of new drugs to treat Parkinsons.

This explains why I don't see much of him and he is difficult to get hold of by phone and /or email!  Balancing research projects and the writing up with the patient list must be a nightmare at times particularly given the individualism of this family of diseases.  It is like the balance in universities between research and teaching always a contentious issue.

 This confirms my decision to stick to my guns and request a second opinion and to know who to ask for after my GP said in effect ‘What’s wrong with the local neurologist and who is this Andrew Lees fellow and how do you know about him!’ I hope “Choose and Book” [My daughter, Eve, was involved  in this in the early days] is thriving because it goes a long way to give people like me a stake in our care that’s if we do our homework correctly; that’s our responsibility  I think the more I can be in control the better but I sense  this is not always wanted regardless of government rhetoric about patient centred services.    Appointments are classic, you are given a time and date, you turn up after spending 30 minutes trying to park the car and paying for the pleasure, only to find that you join a queue of other people  and an hour or so later you are seen.  My time does not matter!!

As it happened I have just donated my first royalties for the book I wrote on workbased learning to Prof Lee’s personal research fund. It’s great to know that I’m backing a winner!  The drinks reception at the Reform Club to raise money for MSA research involving Prof Lees that we were planning to have on 30 November has been moved to the 9^th February 2012 because of the planned national strike.

Oh yes, I went to the seaside this week, the University of Hull,  Scarborough campus, to give a presentation on the role of universities in the creative industries to the School of Arts and New Media because they are deciding the future strategy for the school and  Scarborough campus.  Liz came with me to make sure I didn't do anything silly and fall over. It was lovely to have her company and it does help a lot.  We had a pleasant lunch and they were a really nice bunch of people, quick to get the heart of things which I like.  However, the presentation was a real struggle with my voice letting me down badly.  But we got there in the end!   The group were impressed by my knowledge and experience not MSA and wrote to me a day later saying they wanted me to become involved with them as they take the development forward.  Great, one in the eye to MSA!