Handy hints for living with MSA

Now that that I have been living with this disease for a while, I thought I would draw up a top 10 of handy hints.  I would love to hear about other people’s tips for making life tolerable. So here goes in no particular order:

1.       give yourself twice the amount of time for doing the most basic things such as getting out of bed  - plan ahead including toilet trips because you will be in there twice as long as anybody else

2.       avoid shirt cuff buttons, you will never do them up - it is so frustrating and a biting reminder of MSA, after all you are now living life in the slow lane

3.       have a cooperative and supportive wife, partner or friend - there are sheets to wash,  ironing to do and meals to make, as well as somebody to talk to  and, pay the papers 

4.       think loud when talking because otherwise nobody hears you and they think you are stupid

5.       don’t step backwards because you are more than likely to fall over—you will take ages trying to get back up again, so learn a technique to do this

6.       drink what you fancy in moderation, in my case gin and tonic with lime rather lemon  -you wobble enough already so who cares

7.       eat tasty food in small portions  about four or five times a day -  it is goodbye to beef steaks and anything that needs a lot of chewing —Liz says I am like a pregnant women when it comes to choosing what to eat,  it’s Yorkshire Brack from the village shop that I crave at the moment

8.       Don’t stand up quickly if you have low blood pressure you might see stars and faint which is a bit disconcerting for you and anybody nearby — I am a real liability so  now I keep  my phone with me at all times

9.       Keep working in one form or another for as long as possible, however hard—it stops me thinking about myself and fills the day so I have something to talk about

10.   Exercise  and if you have still got it use it – if you don’t you won’t have it for much longer

P.S.  After Liz read this she wanted to add another hint, keep smiling however hard it is to make the muscles work.

The Good in MSA

Not much has happened this week so I have been reading other blogs which have led to this topic.

 We all have to die sometime and it is only a matter of when and where and what.  We put this in the back of our minds at least I did and never try to think about it.  Death is something we simply don't talk about even in religious circles.  What I mean by this is that we do not engage in discussions about our own death probably because if you have any religious tendencies there is life after death if you have obeyed the religious rules.  Whatever else death is it can be a messy business; personality changes, pain, and doctors trying to keep you alive as long as possible!  I hope that I will not be a pain in the backside for my family but be able to make the best of what's available as we go along this journey together.  So what is the good in MSA?

For me, I now know I am in an end game with a limited life expectancy.   It is not like being run over by a bus, a sudden death with all the regrets for friends and relatives that can surround  events of that kind. So my take on this is not to waste time being sorry for myself or saying why me, but put the time to good use.  At the moment I am organising, with Eve my daughter and her husband James, a fundraising event at the Reform Club in London [ I have been a member of the club for over twenty years]. It is to take place on the 30th November and our aim is to raise awareness of MSA and hopefully money  for research into the illness..  I would not have done this if I had not been overtaken by the disease so I think it can be described as a good.

I have five grandchildren and to be honest until recently I have not been very interested in being a grandfather but that is changing although I cannot do much for and with them.  I am   enjoying seeing them grow up. My son’s daughter, Freya, and my daughter’s son, Adam, have started school for the first time this week and both seem to be settling well.

It has also made me think about relationships and two stand out for me, the Pakistani fruit stall holder in  Skipton market and my barber.   I have been going to my politically incorrect barber with his girlie calendars for over 20 years.  He is a real talker and chats away  always remembering who you are [I have a poor photograph of him which I have  included in this blog].



My Barber  and Assistant



  We have visited the fruit stall on Saturday, on and off now for 34 years. The boss has not changed much over the years and we go through the usual greetings and exchanges every week and now that Liz goes on her own he always asks her how the boss is.  We are growing old together and we’d really miss him if he wasn’t there.    What value do you put on relationships like this?

 I can pretty much choose where I die, so that is another positive but perhaps more than anything else I am with a few exceptions experiencing the very best of people.  This is manifested in different ways from a small unsolicited gesture of encouragement in the gym through to practical support from our friend  Sue driving me places and intellectual stimulus from my lunch partners, Ian and Adrian. With a supportive Middlesex work environment and great colleagues such as the HE@Work team I  feel valued. 

One big good that comes out of this is I do not worry anymore and have stopped biting my nails which I have always done  - Liz now has to cut them for me which is a new experience for both of us.

Liz is a very big good in my life too, but more of that for  later.                                                                                                                                                                               

And now scooters

The news of the week is that Botox has not worked.  If anything it has made things slightly worse, so I think it is back to the drawing board.  I am really disappointed, but perhaps the consultant did not put enough Botox in my saliva glands.  So a trip back to Airedale Hospital to the Max Fax clinic is probably needed, sooner rather than later.  I wonder what entertainment waits for me. The more I get involved in treatments the more I think medicine is an inexact science, rather, a suck it and see approach. If one drug does not work there is always another but I am rarely given any indication of the success rate.  Whilst we are on this topic there seems to be a prescribed standard quantity regardless of body size or tolerance. It seems that I usually have to take twice the recommended dose for drugs to work.  Isn't this where a patient centred approach can make a difference?  In other words, knowing your patient!  All I want is to speak properly, have more control over my bowel and bladder and stop dribbling, because these are all degrading with an accompanying loss of dignity.                                                                                                                                                                                 Apart from the Botox, I have been persuaded by Liz to try out motorised scooters in Harlow Carr Gardens and Bolton Abbey Strid Wood.  This was a difficult proposition; on the one hand, it makes life a lot easier, but on the other hand, tells me I am declining faster than I had hoped.  Anyway scooters are free at both venues!  They were similar machines but the Bolton Abbey one was much faster. On my first try at Harlow Carr Gardens I managed to back into an advertising board otherwise everything went well and gently. Once you are in one of these vehicles everybody looks down on you. Once we had converted my scooter into a tank with bits of wood for guns, which was Seth’s idea [my 5 year old grandson], life was fun.  I was not thinking about disability but being a tank chasing the grandchildren and speeding up the trolley now and then.  It was great fun and my persuade me to use a scooter again but next time Liz will be the target!

Ups and Downs

It has been a quiet week by my standards with no experience of a hospital and I have not seen a doctor, nurse or anybody else from the NHS.  What a relief for them and me!  So I have had time to reflect more than usual.  I have been thinking about how my elder brother from Australia, who has not seen me for three years, reacted when he stayed with us.  He said I was not as bad as he thought I would be.  He didn't say what he was expecting to see.  I suspect that the lack of shaking took him by surprise.  That’s the most visible manifestation of Parkinsons and what most people associate with Parkinsons BUT I have MSA. I have come to the conclusion that if I don't shake now.  I will surely shake later - there is no escape. I wonder what I will be like in three years time.

Another moment to ponder on was a planned walk near Haworth with old friends who all know about my condition.  When we enquired about the length of the walk and whether there was any climb, we were told that it was over rough ground with a climb at the end.  I could not possibly do that so Liz   went off for the day whilst I stayed at home not least because I don’t drive any more.  This is hard to take when I have walked all over the place, the Atlas Mountains in Morocco, the Pindos in Greece, the Tatra Mountains in Poland, the Pyrennees, the Taurus Mountains in Turkey the White Mountains in Crete, the Alps and of course in the beautiful Lake District and Yorkshire Dales.  I love being outdoors so the question is how do I do anything other than sit when everything is shutting down around me?

There have been some brighter moments with a trip to Sheffield, Liz to see her university pals and me to spend time with Ray, a long standing friend and business partner.  Ray has a terrific sense of humour, so I laughed most of the day which can’t be bad therapy for MSA.  I also felt valued as a professional too.  The travelling was no problem although a long day as we took the slow train through Rotherham and Barnsley.  You get to see the Yorkshire underbelly on this route, no purple heather moors here.  We are so lucky to live where we do .I have to find ways to make the most of it but I have not found them yet.

Finally, I have been touched by a kindness.  Now that I don’t drive any more I can’t go to the gym on Mondays because Liz, my chauffeur is in Harrogate looking after Eve’s two boys Adam and Daniel all day.  So Sue, a long time friend and fellow church goer put her Christianity into practice and offered to take me and pick me up whenever I wanted to go.  I only have to ask and she has even organised backup too!  She has a heart of gold.  This human behaviour gives me a real lift.  It seems that adversity draws out the best of people.

So mixed feelings and ups and downs this week.

The Celeb Treatment

I have been having terrible trouble with my saliva for quite a long time now.  What this means is that I tribble a lot, and find it difficult to talk, it is degrading and embarrassing.  For example, when I'm working on the computer I will tribble and it doesn't stop so I get through a lot of handkerchiefs!  Often I am typing with one hand, and handkerchief in the other dabbing my mouth.  In many ways something like this is harder to deal with than not walking properly or being bent.  The same applies to bladder problems which are a symptom of MSA.  These two symptoms for me are the hardest to bear at the moment because I have lost control of the functions and both are very public. 

It is not that I'm making more saliva than usual, but I'm not swallowing enough on a regular basis to take the saliva away.  This happens naturally for most people with no trouble at all, but not for me because of the loss of cells from my brain means that the messages are erratic.  I have to consciously swallow on a regular basis. Chewing gum helps this so I have been having an exciting time chewing my way through different sizes, shapes, colours and tastes of American chewing gum, provided by my youngest daughter Grace, who is living in New York at the moment!

I have been put on a conventional drug route for this problem that was recommended by my London medical team.  It struck me that they are all too familiar with it as it was no surprise to hear me complaining about it.  Currently I use eye drops which I squirt on my tongue and skin patches that are placed behind my ears and last for 3 days.  These two forms of treatment are meant to do the trick but not for me, it still carries on albeit at a slower pace.  Prof Lees had mentioned in passing that there was another form of treatment, Botox, which was the next step.  Yes, it is Botox used by celebs so I just laughed and did not take it seriously.  I thought it was very funny that there was a possibility of Botox administered care of the NHS!  Then to my surprise, I received a phone call from my GP less than two weeks ago asking me to get in touch with him. When I did I was told that Prof Lees team had located a surgeon Mr McCall in my local hospital, Airedale, who could do the Botox procedure.  I was amazed, and even more impressed when out of the blue, a letter arrived on Monday this week inviting me to attend the Max Fax clinic on Thursday. Of course I went and had the usual long, tedious wait with the only entertainment being watching what I thought were doctors coming out of one door crossing the corridor to another door and then after a few minutes doing the reverse repeatedly!  I thought it was hilarious.

  Eventually I was seen by the two men [one was a researcher] that I had watched going in and out of the doors.  After checking me over and asking the usual questions.  The doctor said he had to leave me and talk to the consultant in the room opposite, so that was what the to-ing and fro-ing had all been about. I was pleased to hear that I was deemed suitable to be treated and they could do it then and there.  So I went ahead because I thought it was better than coming back again. In between time Liz, who was my chauffeur was getting fed up not surprisingly as she had been sitting in the car waiting for me for one and a half hours. Interestingly, it took longer for the Botox to be collected from the pharmacy than the procedure of injecting my saliva glands, which took approximately 5 minutes and was uncomfortable but not painful.  So now I am a proud member of the Botoxers but whether the treatment works or not I won't know for seven days and if it does I have to go back to repeat the injections every three months!

That's it now as I am enjoying the company of my eldest brother and his wife, Peter and Angela from Adelaide.                                 

Medication.

This is a topic that has always cropped up in conversation.  As soon as I let a few people know that I had what was then Parkinsons, I was instantly regaled with stories of how successful the medication had been in controlling symptoms for up to 15 to 20 years in some cases, so don't worry!  It was just a matter of trial and error to get the balance right.  So I went down to London, first consultation, I wanted to be put on the appropriate drugs as soon as possible.  They prescribed Levadopa [Madopar] the conventional drug treatment and I went home thinking this would transform things.  I persevered with the drug for six weeks but felt only a marginal difference in my condition, so I got in touch with the London clinic and discussed it.  Over the phone and it was agreed I should have a higher dosage.  So I did, and I religiously dosed myself as instructed.  Again, nothing much changed and I put it down to not quite getting the balance right.  Eventually I reached the maximum dosage with the minimum results.  This was confirmed in one of the tests in my five-day stay at the National Hospital for Neurology and Neurosurgery, called the Levadopa challenge.  Taking Levadopa should result in at least a 30% to 40% improvement and the test demonstrated that this was not the case for me.  It was also, I was told later, an indication that I might have MSA.  I was eventually moved on to Amantadine , which I still take.  It does seem to make some difference, but not a lot.                                                                                                        

Can anybody tell me why drugs have such stupid names that I can't pronounce or remember?  For example my other drugs have names such as Hyoscine, Atropine and Ethedrine.  I don't see the relationship between the name of the drug and its purpose. Is there any logic in this that I can get hold of so that when asked I can explain and not feel a fool?

Apart from the naming of the drugs, there is the chemist labelling which is always difficult to read as they use a light, black ink, which looks as though it's running out on their printer and is always in a small point size.  Seeing that it explains the dosage instructions, I think it needs to be improved or am I one voice on this?  However, I am impressed by the fact that I can reorder my prescription through the GP surgery website and the prescription is then picked up by my chemist, made up ready for me to collect.  If I can't collect it can be delivered. 

Finally for today, I find  different dosage schedules frustrating as they have quickly become the regulator of my life.  Some are one day others three a day, some an hour before a meal another half an hour before the meal and I'm only taking four pills!  What it must be like for others I dread to think. I heard the other day of somebody who was taking 49 different pills a day!  Apparently there are horror stories of Parkinson’s patients in hospital not being given their drugs because their regime does not fit into the hospital schedule!!  There is a sad case study of this in the latest Parkinsons UK magazine.

Work

I have always worked throughout my adult life and it has successfully occupied my time.  The turning point in my professional life was in 2000 when I took on the University Vocational Awards Council as the founding chief executive, part-time.  This allowed me to portfolio work which is what I have done by setting up my own consultancy company, Safe Hands Management Limited which is in its 11th year of trading.  So I have a regular income to pay the bills and additional project income which can vary enormously.  Working like this also has the benefit of largely working from home in a small converted barn next to my home.  In retrospect, I'm rather glad I took this decision because, as MSA increasingly takes over, I would have been unable to hold down a full-time job.  It was already beginning to happen but I didn't know what it was when I was working at the University for the Arts on the Creative Industries Observatory project in 2009.  This was primarily around an increasingly unmanageable bladder, and a noticeable slowing down of my walking particularly uphill.  I put it down to getting older and increasingly unfit and just left it at that.  At this time I was travelling to London once a week, catching the 6:55 AM train to London from Skipton arriving at 9.50 am, then a 30 minute tube ride to the Elephant and Castle.  By the way, have you ever seen public toilets on the underground?  When I needed one, I couldn't find it!  I would often stay overnight at the Reform Club and have other meetings or another day at the University.   This highlighted another irritating result of having MSA.  I could not undo the buttons on my shirt cuffs or do them up for that matter.  Consequently, I used to choose shirts that allowed me to get my hands in and out without undoing the cuffs.  This dramatically reduced the choice of shirts I could wear.

Slowly and surely MSA has had its way.  Several of my contracts came to an end.  I did not try to renew them or get new business because I was getting tired quickly [I now know is to do with low blood pressure] and finding it more difficult to travel. It suddenly dawned on me that I was progressively being de- skilled, and becoming more childlike, relying on others to do things for me, like buttons!  Anyway, I had two books on the go and had moved to Middlesex University, Institute for Workbased Learning as a part-time Professor of Creative Industries and Workbased Learning.  The only problem with this is that Middlesex University is largely in Hendon and a bit of a trek to get to.  I also was completing a doctorate in professional studies by public works.  As Mark my oldest child, and history lecturer at University of York, said to me I had done this the wrong way round, normally the doctorate comes first, followed by a professorship later.  I was also editing and still do the Creative Industries Journal.  I wanted to continue working as long as possible as well as being forced to live with this disease, which is destroying more and more of my functions.  An example of this is my inability to write legibly and as for signing my name, it is laughable.  I don't know how the bank allows it.

So I began to slowly reshape my working day.  There is not much I can do to control MSA, but as one Parkinson person said to me when I went to a Parkinsons UK branch meeting in Skipton, ‘ if you don't use it you will lose it’.  I have taken this on so I try to go to the gym three times a week at the Devonshire Arms Hotel Spa in nearby Bolton Abbey.  The staff there are great and look after me.  They have even managed to earmark cubicle 1 for me.  So the days breakdown into working in the morning from around 9am until about 12:30pm, a leisurely lunch and off to the gym which is about 5 miles away at 1.30pm.  I exercise for about an hour and a half with a programme that is designed to counteract MSA.   I get back about 4:30pm have a cup of tea and cake which is an MSA indulgence before going back to the barn to do some more work.  I also do my physio exercises in the morning when I get up and when I go to bed.  Another indulgence is starting work in the morning later than I have for years and no work in the evening.                                                                                                                                                                                                                                                                                

Computers make it possible for me to work from home and I am learning all the time but rely on my computer man to get me out of trouble when I have been silly.  I hope I can reconfigure my computer to cope with my changing circumstances, so any advice would be appreciated.