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!

Walkabout

I have signed up to join the disabled Ramblers Association.  It only costs £15 a year and that enables access to a trampster trek whenever you want one.  I am looking forward to that because the landscape means a lot to me - I have decided to show more photographs this week.  It is also to show that I run a responsive blog - my Scottish pal enjoy the images of the Yorkshire Dales and where we have lived for 33 years, and has requested more.  This countryside has always been a spiritual and emotional comfort blanket for me.  When I was working hard and there were problems that were getting on top of me I would put on my boots and disappear most Sunday afternoons for about 2-3 hours on the Chatsworth Estate

grouse moors at the back of our house, whatever the weather.   A really memorable walk was in a white out one January and another was when Liz and our friends Wendy and Ian were with us. We walked through huge snow drifts to Grassington and couldn’t stop laughing because Wendy who is not as tall as the rest of us was up to her thighs in snow at some points on the journey.                                                  

I always came back from walks relaxed and with things in a better perspective.  MSA has killed that, so I only have memories now and some lovely photographs.  I go to the gym instead but it’s not quite the same although the drive there on the scenic route, not the shortest route, is over the moor.

One lesson from this is that visual diaries of favourite places are precious. You don’t realise how precious until you can no longer get to them.

Out and About

I got to have a day out on Sunday for a change.  We drove over to Sherburn in Elmet to see my mother, who is 93 years and lives on her own.  She always wants to make lunch for us – cottage pie this time which was delicious. We do her shopping for her and help with financial and administrative matters.  The only problem is that mum is deaf and uses digital hearing aids.  As a result of MSA I speak much more softly nowadays so we have entertaining conversations where mum pretends she has heard what I have said.  The giveaways are when she laughs at the wrong time.  Nevertheless she is a remarkable woman and is all set to live longer than me as by all accounts I have a maximum of about eight years left.

We left mum in the early afternoon to travel to Harrogate to participate in our grandson Adam’s fifth birthday party.  I must say that I like being chauffeur driven nowadays with no worries about speed traps or parking.  The party was for 18 children, but more turned up, plus parents who wanted to stay and was held in the Methodist church’s recently converted meeting room that is very near to James and Eve’s home.  It was a lovely space with a friendly atmosphere to it.  It was a well organised party [I expect nothing less from my elder daughter] with games to release energy, dinosaur hat making and simple food.  Jamie Oliver approved food which seemed to all get eaten.  It was noisy of course but everybody seemed to enjoy themselves including Adam and Daniel.  Liz got into the swing of it straight away whilst I was parked on a chair that I could get out of to go to the inevitable toilet.  I was an observer not a participant and an object to stare at by some children I think because of my eyes [I’ve had a lazy eye since I was 3 years old] as much as anything else.  When the party started to break up one of James and Eve’s male NCT friends came up to me, introduced himself and asked what I was suffering from, so I wasn't invisible which is usually the case.  He then talked about his father in a caring and concerned way.  He has motor neuron disease, which is far worse than MSA in my opinion.  He said his father was normally grumpy but now he had good reason to be.  His auctioneer friends have set up a rota of visits.  This is another example of the goodness in people.

Monday, found us travelling to the University of Lancaster where I am an external examiner for the postgraduate workbased learning programmes.  The team there know of my condition but they don't treat me any differently than they ever have, they have even extended my contract.   It is so refreshing being treated normally and respected for your knowledge and experience not what your body looks like!

So it has not been a bad week and I have only had one fall but I am still fighting a saliva war!