Scooter’s big brother and other things

Trampers

I have just come across something that looks like the disabled world’s 4x4 off road wheel chair! It is known to its friends as a Tramper and it is capable of travelling over rough ground, and steep hills.  Apparently a group of trampers were seen over the summer at Malham Tarn in the Yorkshire Dales, my neck of the woods. They were also spotted on Mastiles Lane, a well known Dales green lane, but if you are observant they can be spotted in such places as the North York moors,  the New Forest, the Thames path and the Gower Peninsula.

So I went to the Internet to find out more about them, and discovered that the trampers are owned by an organisation called the Disabled Ramblers Association.  http://www.disabledramblers.co.uk/ 

They describe themselves;

We are a group of like-minded disabled people who enjoy being in the countryside, and who get about using paths and trails of all kinds. We are truly 'ramblers', although very few of us can walk more than a few yards! Our membership consists mainly of mobility disabled people and we get about mainly through use of a wide variety of mobility aids, ranging from electrically powered pavement buggies, scooters, powerchairs and, in some cases, manually propelled wheelchairs. We organise rambles of varying difficulty from easy to challenging all over England and Wales, and, along with our volunteers, spouses and friends, each event provides recreation and challenge to suit every taste

The group has regular ramble programme and has covered over 1000 miles so far.   I think I will join this outfit; it sounds like fun yet has a more serious side- improving access to the countryside.

Gym

I have been happily working through my exercise routine in the Health Spa at the Bolton Abbey Devonshire Arms Hotel for about 2 years.  It has definitely been good for me, as there is a relaxed atmosphere and caring staff. I feel that I have been looked after and interest taken in me and my condition.  My routine is intended to help with posture and was set up by the instructor with advice of the specialist physio.  This recently has been augmented with stretch exercises which are very good.  Then out of the blue a month ago I was offered a place by my physio on a free 12 week NHS sponsored course at the local Council owned gym.   As I am not one to look a gift horse in the mouth, I took the offer up. Now I am the proud owner of two gym membership card s and will continue to go to Bolton Abbey and build the course around that.  The gym this part of the Aireville leisure complex, and is packed full of kit.  It was daunting walking into a place with rows of treadmills, cycles, cross trainers and other equipment that I was not at all of familiar with.  Everybody looked deadly serious in there which was a bit worrying.  I met up with my specialist physio and the instructor to be introduced to the kit and to plan a routine intended to concentrate almost entirely on the muscles that straighten and improve my posture.  As we were going around Louise, the specialist physio, told the instructor I was strong and therefore didn’t  need muscle building exercises or aerobics.  I could see the disappointment on his face.  I think he thought he had got a gullible old fool to play with.  Anyway we will see what happens, as I do my first full routine.

People

My specialist physio Louise Cheshire is leaving on 21 October and is not going to another job.  She works part-time and has a family.  I will really miss her enthusiasm and positive support and knowledge of the disease.   No doubt the NHS in their wisdom in order to save money will not replace her.  I can't help thinking, what a waste of knowledge and experience. We must  get better at capturing people’s experience and knowledge and passing it on.

That’s it for now.

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!