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.

 

 

 

 

 

 

 

 

 

About Susan

I am a middle aged woman wondering where all the normal middle aged people are. I don't want to regain my lost youth but nor am I ready to rush headlong into old age. I realise I am oldish rather than youngish but surely not actually old yet. So this is my chance to muse on my middle aged existence. This will save my teenage children from the horror of me musing on age spots or deteriorating eyesight which is surely a kindness. Now that I have been diagnosed with MND (ALS) this blog will have to change a bit, but I AM still middle aged too.

{12} Thoughts on “One Year On so let’s see how I am

  1. Hi Susan .. another great read .. .Always enjoy your blog’s when they arrive ..
    It is a good idea to keep a check on your oxygen levels and OBS on a regular basis then if you have to contact a member of your team you can pass on the readings … I check my friends regularly (and my own when I am at it lol )
    Look forward to your next blog popping into my email box ..
    David xx

    • Thank you David. I am rather enchanted with my oxidiser. It is fantastic for checking my oxygen and very reassuring so far! I hope you and Michael have great readings too

  2. I’m so glad you had a lovely Christmas and that, you are doing such a great job, keeping busy as well as so inventive!! Keeping the grey matter busy enough finding solutions to difficulties and testing out the new technologies.
    So many Susans, if they are all like you, can’t be a bad thing. Interestingly I can’t think of many that I was at school with?!
    Great that you are getting some Hydro, hopefully movement feels easy in the warm supportive water? I used to like taking people in a few years back. Just that after a few patients the therapists come out looking a bit prune like haahaha. I think they limit the time the therapists are in too now. I always used to think about the song ” Water , water , everywhere, not a drop to drink..”
    Keep going, I enjoyed my 2 trips to Scotland last year so will try and fit another one in this year.
    xx

    • I love my hydrotherapy – and the water is spectacularly warm. Not at all like a swimming pool! We had 12 of us for a hotel lunch on Christmas Day and lots of other family things too. A lunch on Boxing day, tea on New Years Eve and lunch on New Years Day too. I loved it all. I hope you had a gorgeous time too. And fantastic if you make it back to Scotland this year.

  3. Hi Sue,
    Its so good to read your blogs Sue. And I love your thinking and reading you are keeping busy and being inventive at the same time, keeping the grey matter active. I keep trying to get our students to think that way..but not always with success! …. You are a true inspiration . xx

    • That is the trouble with students – they don’t always want to use the grey matter much! It makes me very happy to think of ways to do things when I can’t quite do what I used to. Adapting is glorious. I am not an inspiration at all but I am good at being perky!

  4. Hi Susan,
    Can I ask what appt you use also can I ask about your hydrotherapy, where do you go for that?
    I enjoy reading your posts and am pleased to hear you are doing well all things considered,
    Happy new year to you and let’s hope they find a cure soon .

    Best regards. Chrissie

    • I am using a beta version of Predictable so it is a test. But it is fantastic – when they are happy they will roll it out I think. I was actually given a chance to try it through this blog! I am lucky to live in Forres which has a hydrotherapy pool. I love going as it is warm water and the physio is lovely. I spent half an hour doing exercises which I think really help.

  5. Hi Sue

    Thank you for staying so strong and positive. Don’t think this gets you out of coordinating defence, you are still the best at that on UK servers,

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