One Year On so let’s see how I am

On the 25th of November 2015 I was diagnosed with MND.  I am so excited to still be here over a year later.  I have bulbar onset MND which means the prognosis is pretty bad.  But I won’t go into that as there is so much I can still do.

So what have I lost in a year?  When I was diagnosed I could still talk but I stopped being able to say anything in June.  However I just use my app to communicate.  I have a lovely new Beta version to try at the moment and it is so much better.  Much as I love Predictable but this version is far better.  I am getting faster at using it too.

The only downside is that I have it on my phone and the iPad.  The iPad version is fantastic.  I often show people what I have written rather than playing it.  In a crowd it is far easier as my app isn’t loud.  Unfortunately I can’t always do that on the phone.  Let me show you what happens.  I have to play the message for people to get a brief glimpse of what I have to say. Then it returns to this.

A year ago I was eating normally.  Now I need easy to eat mushed food.  I can eat crackers but it is messier than my blitzed food.  It turns out you can mush almost anything, you just need liquid to get to the right consistency.  At some point I won’t be able to eat at all but I can for now so am very happy.  Sadly mushed pork pies don’t work which is a blow as they were a favoured high calorie snack earlier in the year.  My tongue is weakening so I am getting closer to ensure through the PEG.  I already have some ensure each day.

I knew a year ago that my right thumb was weakening.  So I am surprised I can still use both hands.  My right hand does look a bit odd.  Let me show you.

I am thrilled I can use my hands happily still.  Well, I can grasp things and use cutlery which is exciting.  I can still do a signature too but I wouldn’t want to write much in one stretch.  Touch typing is still possible for my left hand but I use one finger on my right hand.  It is easier like that. It is a shame I am right handed.  I think you can see my fingers curl a bit.  I can stretch my fingers out but I have to lean them on something to do it.

When I was diagnosed I could walk swiftly along.  I am still steady on my feet but am far slower than I was.  And stairs are tricky.  I can climb stairs but my bannister on both sides helps a lot.

Dressing myself is still possible and I can have a shower, even wash my hair.  I just use an eccentric method to dry myself as my right arm is quite weak.  So I use a small towel for my arms as that is easier.  Then I fling a big towel round my shoulders and cuddle it tight to make sure my shoulders and back are dry.  Next I drop the towel so it is under my armpits and head for a chair in the bedroom.  I think it works to dry myself as I sit on the towel to put moisturiser on and luckily I can still get off the chair.  It is easy to forget but I dry round the PEG and put barrier cream round it too. I am not sure how long I will manage this method.  But it is fantastic that it works for now.

Ooh, I missed out the fact that I squeeze out shower gel between my knees.  Sometimes shampoo too.  This is thanks to my lovely sister-in-law, Robin.  She hurt her arm (a bit more than that) some time ago and I remember her saying about squeezing bottles between her knees.  Yippee, something I can do too.

I am sad I can’t kiss anyone now.  But they can kiss me and I can happily hug people.  And I had a wonderful Christmas.  I can’t eat much but who cares when I can tap away instead.  I managed to see lots of lovely relations and friends too.  It is really special when I can do that.  I loved seeing family and friends so often and catching on news.

My really big problem is weight loss.  For months I ate to my heart’s content and maintained my weight.  Having a PEG fitted and then an infection was the start of the slippery slope.  I have lost just over 2 stone since I was diagnosed.  Potentially it isn’t great to be under 9 stone when you are 5ft 10″.  I hope I am wearing enough clothes to hide it a bit.   Conventional wisdom suggests it is best to maintain your weight with MND.  Whoops.  I am also told that it is best to be a bit overweight when you are diagnosed.  Sadly my body mass index was about 22 when I was diagnosed.  So not overweight at all.

I have a lovely new oxidiser now as oxygen levels can get iffy with MND.  Now and then I check to make sure mine are fine.  They always are so far.  Two days ago I put my finger in keenly and this is what I saw.

It is an odd angle but you can see my pulse was fast.  I wonder why it was 83.  But my oxygen levels are really good.  Yippee.  Just like anyone else. We got it out on New Year’s Day when there were 8 of us for lunch.  Every single person keenly held out a finger to have a go.  It is so simple.  And reassuring.

I know I am weaker than I was a year ago.  But I love being able to do as much as I can.  When I was diagnosed 13 months ago I had no idea how fast it would move.  We anticipated a wheelchair and all sorts by now.  At the very least we thought a walker.  Yet for now I don’t need anything like that.  I have to be careful not to trip as it is difficult to steady myself if I do and I can clatter to the floor if I fail to steady myself.  It tends to be noisy if I do.  And I tend to bash something.

I have a lovely time exercising now.  In the past I rolled on the floor but is hard to get up if I do that.  Now I roll on the bed.  I can get off that.  I also still use my shoulder pulley, exercise bike and little trampoline.  It is thrilling that I can still  do all of that. So we anticipated a more rapid deterioration than has happened.  That has to be good.  I don’t know how I will get on in the year ahead but with this disease you have to take one day at a time.  And celebrate the stuff you can do now.  That isn’t a bad mantra for anyone now I think about it.   Celebrate every day and all the stuff you can do.

I also have hydrotherapy once a fortnight with a lovely physiotherapist who is called my maiden name.  She married into the name and I don’t have the surname any more but I love the fact she is Susan Fraser.  It makes me very happy.  Actually I have another Susan as my new MND nurse.  Quite fun.

Sometimes we all get scared.  And sometimes we really should get scared.  Other times we know we shouldn’t be scared but we just are.

I meant to publish this much sooner but the past month has whizzed past.  It is traditional for me to link to a song.  When we are school my friend Mary was teased about this a lot.  My school swarmed with Susans.  It was the most common girls name the year I was born.  Harsh as I was named after my great great grandmother.  I think my friend Mary was the only one in school.

You may not have heard this song before.  Lying in the arms of Mary.  The video is suitably psychedelic! It isn’t a great song but it reminds me of Mary every time I hear it.  And she still is a great friend.










Love your Life

Have you always loved your life? Do you love it now?

This is a title I have wanted to use for ages.  So much so that I looked at all my old posts to see if I had sneaked it in before.  Phew.  I hadn’t.

I haven’t always loved my life.  Oh, the angst of some of my teenage years.  I was tall, shy and very self conscious.  That is a rubbish combination.  It is very hard to become invisible as a teenager when you tower over most of your classmates.  I gave it a go, just the same, but a hunched over look is never really a winner.

When I was about thirteen and at my most lacking in confidence phase my father said something to me that I never let him forget: “People say you look like your mother but that isn’t true.  She has always been very pretty”.  My parents adored each other but I always, well, some years later anyway, laughed with my father about what an unforgivable thing that was to say.  My father was wonderful, as I described here, with a bit about his funeral too, but I was still at the wrong age to hear that.  To make matters worse I was also startlingly stupid at that age.

At my school we were taught to play lacrosse.  This is an evil game involving a hard ball flying around at head height and you each had a fairly innocent looking stick (crosse really, I did learn the terms) from which you could fling the ball.  Early on in our tuition, and I can promise I remained appalling at the game, we were put in pairs and told to throw the ball at each other and try and catch it in our crosse.  Crucially, we were also told not to move as it was a test of the accuracy of our throwing.  My partner threw the ball to me.  I could see if was coming straight at my head but we had been told not to move so I didn’t.  And was knocked out.  As I said, staggeringly stupid.  I am pretty sure that at that age I did not love my life.

I have spent far more of my life loving it than not though.  Life really has been very good to me.  I have been scrolling through past posts of mine and realise I say that quite a lot.  But that doesn’t make it any less true.  Of course, I wouldn’t choose to have MND but most of my life has been wonderful.  I have a gorgeous family and fabulous friends.  I have read gloomy tales of people being diagnosed with MND and then finding friends drifting away.  Despite my very dodgy speech my friends have been wonderful.  I really am a lucky girl.  (OK, I know, not really a girl!)

I want to mention my mother here.  My father, as I described in the post I linked to above, was interested and interesting.  This is my sort of golden rule of how I would love to be if I can.  It isn’t always easy.  My father died almost three years ago and my mother has been sad ever since.  My father was 79 when he died and I know my mother feels he was taken from her far too soon.  My mother says she feels lost without him.  I would love so much to help my mother appreciate that she still has some lovely people and things in her life.  We have tried but she just can’t see it.  It makes me very sad to see her as she is and I hope like mad that something will change but you just can’t make someone else love their life.  So, concentrate on loving your own life.  You will be so much happier if you can.

Why do I love my life, despite bulbar onset MND?  It is a pretty rubbish way for it to start if you look at this.  I read that early on and it was very scary as I imagined a swift deterioration.  Mine is progressive bulbar palsy as you have probably guessed.  But look at me.  Well, you can’t really look at me but here is a helpful photo of me standing on one leg just now.  You may recognise the gloves if you have read earlier posts.  I do love them.

one leg

Truth be told, I can’t stand on one leg for long, but I can still do it.  Surely a cause of celebration.  My aim, of course, is to enjoy the things I can do while I can still do them.  Even dancing happily while I do the ironing is great when I may not be able to do it for long.  What else do I love about my life?  I can still eat (slowly) for now.  I can still write and I can still walk.  I know this won’t last but how fantastic that I can still do these things at the moment.  Please do try and find the good in the life you have rather than dwell on the bad bits or anticipate a gloomy future.

Yes, I know that can be easier said than done.  Bad stuff happens.  I won’t pretend there aren’t some pretty grotty things about what I have, even at this stage, despite looking as if there is nothing wrong with me.  Sometimes I drool, especially when I am tired.  It really isn’t a gorgeous look and it will get worse over time.  Sometimes I cough out of the blue and sound as if I am gasping for breath between the hacking cough sounds.  Luckily, so far, that has really only happened at home.  I suspect it is worse for the people who hear me than it is for me.  So, my life isn’t all sweetness and light but there is so much more that is great about it than there are bad bits.  Even now.

If you have read any of my previous blog posts you will already know that I can be sickeningly perky.  I still find it very easy to laugh at articles suggesting the best way to lose weight or age gracefully.  Neither of those applies to my life at all now.

I turned to my computer and looked up ‘Love your life’ and this is what I found.   Do, please, take a look.  I love that link.  It is just fun.  There is so much to love about life.  We just have to find it.

My plan is to finish this with a joyful song and this really does fit in with that.  ‘Here comes the sun’ from The Beatles.  Isn’t life great when the sun shines?  It is a gorgeous day here today so do admire this gratuitous pcture of my washing blowing in the breeze with the sun shining.


OK, I have to confess I am going to sneak in another song link after all.  This is ‘Perfect Day’ by Lou Reed and is here because I just love it and it always cheers me up to hear it.  That means that, for me, it is seriously life affirming.  I love my life.  Do you love yours?