Monopoly to Mahjong

Yes a lot has happened, one of which is learning a very simple form of Mahjong.  And with bridge online three times a week plus my piece of music a day from a Year of Wonder by Clemency Burton Hill and a poem for every night of the year, my time is being well spent.  Add to that, operas in alphabetical order (I’ve got to G) each day is full of beauty and inspiration.

Fit into that the time I sit in the greenhouse where I can still just about prick out seedlings (left handed) and take cuttings; but to be honest just sitting in there and watching everything grow around me brings me a lot of pleasure.  It’s extraordinary what you see, when you actually stop.

And apologies for the huge gap since my last post.  The reason is simply I have had nothing to add except mundane, routine stuff with regards to my health.  

Although I have become a granny!  Certainly NOT mundane and hardly routine.   Lily Isabella is a positive delight and I could fill this blog with beautiful photographs and anecdotes of the young family’s adventures so far.  Her passport is being well exercised!   But I must resist that temptation and concentrate on the real purpose of this blog.

Back to mobility, Mabel is still going strong and I have some fairly hair raising rides around the garden and negotiating tree roots, low branches and slippery paths. But so far so good and I’ve only ended up in the flowerbeds a couple of times. 

But my great excitement is the local bus service and my new best friend Sean, who is the driver of the 620 bus which visits the village at least a couple of times a day.  It visits more often during the term time. I still haven’t quite got the hang of the service times, but I’m not overly sure that matters because Sean will quite often take his own little detour in order to give a service to people who find it difficult to negotiate a problem and public services at the same time. For example, I asked him if he could possibly drop me at the top of the lane from where I could then get the rest of the way to the MS Centre on Mabel. Bless him, he takes me right down to the rugby club car park, where he can then turn round to resume his official route, and I am about 50 yards away from the front door of the MS Centre! He is also a source of information with regards as to who lives where, how often they travel on the bus, whether they are hosting Ukrainians or not, and how long they’ve been travelling on the bus! What’s more, when I return from Canterbury, he drops me at the bottom of our little driveway.  How is that for service?  How do you put someone forward for an MBE?

And I have just obtained a Railcard, so my next excitement will be negotiating Network Southeast to travel to Brighton.  And this is the reason why I am offering this post to you today.

A friend has told me about somebody she knows, living in a different part of the country who was misdiagnosed with Multiple Systems Atrophy and after a visit to a doctor in Brighton has had a shunt inserted.   He has/had Encephalitis and now his life is returning to normal.  Within 24 hours he began to feel an improvement and instead of taking the MSA diagnosis and heeding the advice to just wind down and prepare for the end of his life, thanks to his son he has questioned the diagnosis with positive results.  

I am sure I have not been misdiagnosed, but I have always wondered two things. You may recall from earlier posts on this blog that there was some question as to whether my MS may have begun when I had problems with my eyesight back in 1986.

If that was the beginning of MS then it would mean I have secondary Multiple Sclerosis not Primary which I would’ve thought would make a difference to the drugs I could have been given.  Stable doors and horses bolting I know, but for future use…..?

Also the lumbar puncture I had at UCLH revealed there were no oligoclonal bands.  For the full explanation of this terminology I would refer you to the MS Trust’s website.   If these bands were present it would show the presence of disease activity. Whilst it doesn’t necessarily mean that someone has MS, about 80-95% of people with MS do have oligoclonal banding in their cerebrospinal fluid.   I think I’m correct in saying that before the days of MRI machines a lumbar puncture was (and still is?) a necessary tool to give a diagnosis.  And MRI machines aren’t necessarily the definitive answer;  to quote George Jelinek from his seminal work “Overcoming Multiple Sclerosis”,  ‘It should be noted that a very large review has shown that MRI is not particularly accurate at diagnosing MS…….’.  It is on this basis I am prepared to see another specialist.  So, on Friday, mounted on Mabel, armed with railcards, phone and back up batteries, wearing my best fighting trousers and not forgetting my glasses (might even take a spare pair) I’m off to the Montefiore Hospital on the Sussex coast.   I will also have discs with the MRIs and reports and the lumbar puncture result and report.

This is the seventh specialist I will have seen.  I really don’t hold much by it, so I will not be disappointed if there isn’t a magic shunt, or something.  But at least I get an outing on the train and find out for myself how accommodating people are on the railways when they have a wheelchair to deal with.   If it’s anything like the buses it will be fine.  And I don’t think I’ve ever been to Brighton except putting into the harbour for a night when sailing from Falmouth to Dover. I don’t think that counts!

Life at our new home continues to be as perfect as it could be – health matters aside. 

Pip continues with his chemotherapy.  I think he’s on the fourth lot now which is mainly oral and a mind boggling timetable of when and how they should be taken.  One does wonder what on earth happens to your insides when you swallow something that is recommended ‘you shouldn’t touch’!!

I will update you after Friday’s appointment.