Shall we Dance?

I used to be able to do Scottish Country Dancing. But I used to love to dance. I can’t now but I can shookle behind my rollator or trampoline.

My elder brother and I first learned from a scary lady called Mrs Grant. She paired the pupils whose parents weren’t there with someone whose parents were there so she could always blame the person without parents. My parents never stayed. So we were paired with endless people whose parents were there. We did learn to dance though.

So why did we keep going? We enjoyed Heinz tomato soup in the car before going home which we adored. Plus we didn’t have a choice. One day Alasdair was dancing with Mrs Grant. At least that was something I escaped. Alasdair was just below her very full bosom. Mrs Grant kept saying to look up. Alasdair stared fixedly at his feet, Would you have looked up?

So we learned to dance reels and things like ‘The Dashing White Sergeant’

As we grew up so we got invited to reel parties. It started with the 9 to 90s That was at the Station Hotel in Inverness. My friend Gina was always popular as a partner. I was too tall and gangly but because I chatted to Gina I was like a second choice. Not for the Dashing white sergeant though as you could have two boys and one girl or two girls and one boy.

I had Moritz, a really old friend who I had I known since we were both 10 visit. It felt very good to see him. He reminded that my father had sent him instructions aged 16 for foursome, eightsome and sixteensome and a dance I had forgotten I knew called ‘The Machine Without Horses’

Of course I still have MND and can’t really dance but it is fun to look back on what I could do. I know I am slowing down. I fell over a couple of days ago but David caught me so I fell very slowly. He is always poised to help a lot of the time. It can’t be fun for him, but he does it.

Sometimes I can write more and sometimes I can write less. This is one of those times. i am very slow at typing now. But I can’t go without a song. I am going with Reet Petite as I have found a very odd video. I hope you enjoy it.

A lift for me

I meant to say about my lift weeks ago. But time does fly by. So here I am writing about it now. I love it.

It took about six months to get it. Luckily we planned in advance but the structural engineers took ages. Apparently they always do. David was struggling to get me upstairs for the last couple of weeks but we always made it. But now I glide up in the lift. And down again. It is Pollock lift as we don’t get a choice this far north. So they came from Northern Ireland to fit it. We had a father and son team. They were amazing.

Unfortunately I fell on the second day. I shot back far too quickly. I thought I fell straight back but it turned out i didn’t. I hit a pane of glass. I don’t fall often so this was a shock. Strangely I always fall slowly. We don’t know why but I often just crumple. I can show you the pane of glass but not the cut on top of my head. It was very minor.

We should head back to the lift. They expected to take two days but there was a part missing so it took three days. But I can’t tell you how glorious it is. I love it.

But I have endless kit around the house. I had a pillow lift which worked for me for ages but just this week I got a profile bed. This is really just a hospital bed.

It makes me laugh to realise just how much I have. Downstairs I have my gorgeous riser recliner. I did have a Council one. But this is new. I had one that was made to measure but the seat was too short. Weird. I got this one on Friday and it fits perfectly. If anyone is wondering about me wearing the same clothes. I have 4 pairs of trousers, multiple vests, and three jumpers too.

The downstairs loo has a lift mechanism that rises me up. It is clever as doesn’t have a motor just hydrolics. I now have a stand aid which I don’t need yet but I was given a demonstration all the same. It is counter intuitive to lean back but that is what I must do.

You have seen my wet room already. Truth be told I find the wet room pretty scary whilst I am not in wheelchair. I have a wonderful thing that lowers me into the bath in our little bathroom. Not scary at all.

I can no longer undress myself or dress myself which is frustrating. David has to do it. My shoes are the greatest problem but only getting them on. My world is shrinking. But my lift brings me joy each time I use it.

A friend made me laugh by saying Houston we have lift off. It was very funny. No one jokes about my lift. But I loved the fact that my brother and his wife and the OT have all tried the lift. It is quite fun to try. Anyone is welcome to try. It makes me laugh as the top weight it can take is 40 stone. I don’t think I get close even sitting on the sanichair.

I haven’t used the chair in anger yet. So it is perfect for the lift.

I have so much fun with all my kit. They are trying to find a way for me to use eyegaze when I can no longer type but it is hard with my head tilt. So they hope to get experts on the case.

We had fun last week traveling to Aberdeen to get plaster casts made of my feet. I have a few problems with my left ankle turning in. So I am getting splints. They have to be made in Glasgow so it isn’t quick but in a fortnight I will be modeling them. I can’t wait. It will be a real treat. I will show you what my foot looks like.

Meanwhile my son, who is 19, is running the tough mudder in London in September. He is running for MND Scotland which makes me very proud. I can’t resist giving you the link.

It is time to finish with a song. I can’t resist doing this each time. It is such fun choosing. I like to choose something snappy that Chul can stuck in her head. These boots are made for walking. I really hope you enjoy it. You have to be aware of very short dresses.

When a shock happens

My mother died unexpectedly last month. It was a shock for all of us.  Many people have told me how beautiful she was and how she was a great friend. She was so jolly when my father was alive. And a fantastic cook too. Alas we she never really tried to get over my father’s death.  He was the love of her life and she was his too.

So I have been thinking about shocks. I reckon I have had a charmed life with not many shocks.  My diagnosis wasn’t really a shock as I had a good idea was coming.  My mother dying was a shock as well as my grandmother. I was living in Germany when my Granny had a massive stroke. It happened out of the blue. Despite the fact it was 2002 I can still remember hearing about it.

The same day my little son aged 4 went down a covered slide. For some reason another child has straddled the bottom of the slide. His legs were fine but my son was unconscious in a crumpled heap on the ground.  We were on an American base at the time but most people ignored my screams. A solitary person did come over to me and checked my son had come round and offered him a drink of water. I was so grateful.

i am trying to think of other shocks but they are few and far between.

So how am I now? I have a far more dramatic head tilt than last time. My gorgeous hairdresser cut my hair squint so I don’t look odd. Well I do but he was wonderful adapting. He did say it goes against anything he was taught.

What else is different? Well I now walk holding on with both hands and have a snazzy new rollator. I have a basic one upstairs provided by the Council. I use both. I am a lot more nippy with the snazzy one.

I even take that one outside. I love my ramp as steps are really tricky now. But I can head gleefully down the ramp.

I still bounce every morning.. I was put onto this by Dagmar Munn. Do look at her blog if you haven’t already. She is a great inspiration. I don’t quite do the same exercises as her and I do the duration of songs but I very nearly copy her. It is fun to bounce. I only change the way I start. I bounce with my feet down and just use my knees. It is a good warm up for me.

it is an exciting time here. Next week we will get my through floor lift. This was delayed due to the structural engineers but it is coming next week. Yippee. I can’t wait. My husband’s back is excited too. He helps me go upstairs at night and downstairs in the morning. I can balance on each step but can’t lift my feet to go upstairs so lift my right foot and he places it on the step above then hoiks me up to the stair above. You can see why his back yearns for the lift.

I have been told I will get a shock the first time I try the lift. But I don’t expect it to wobble. Watch this space to see if I get a shock.

What else has changed since I last wrote? My arms are weaker now although I credit bouncing for the fact I can still grip. This is useful for hydrotherapy as I can grip floats. This is very useful. I walk across the pool holding my arms with the floats in front of me.

I will go back to my mother’s funeral. I was in a wheelchair which is not something I enjoy. Needs must though. I think people who didn’t know me must have thought I was mentally handicapped as I sat in a wheelchair with tissue in my mouth. They shook my two brothers by the hand and ignored me. Those in the know hugged me or shook my hand. And we raised £745 as we collected at the funeral. Just great. I bumped down the path backwards to the grave. I even managed to hold a cord.

When we moved on to the wake I was relieved to find a ramp. I was parked at an empty table. This made me nervous. But people arrived swiftly to fill the table. I was thrilled. It gave me a chance to catch up with people. I was so impressed that my aunt and cousin had caught the sleeper the night before and travelled back the next night. But I loved catching up with people despite the sad occasion.

I really haven’t had much shock in my life. There was the Christmas my brother persuaded my parents that the perfect gift to receive jointly was Raving Bonkers. I was not impressed. I still bear a grudge today. The game involved one red robot and one blue. They boxed. It was a two person game. Whoever lost the head of their robot shot up. That bit was fun.

As you know I like to finish with a song. I was never a Bay City Rollers fan but this makes me laugh. Shang-A-Lang. I know another Susan, who was a fan, changed her name to Sioux. Far to ostentatious for me. I don’t know if she kept it up after school. I hope not.

Work going on

I have been quiet for a bit but lots of work has been going on.  Very exciting as we are staying ahead of the drag curve.  Just in some cases.

It took two weeks and a lot of noise but we have a lovely new wet room.  Our en suite has been transformed.  Our son lost 30cm of his bedroom  (he is very laid back son at University so doesn’t mind) and our en suite gained the same amount.  I love it.  It has a non slip floor and a very snazzy mirror you can waft your hand under to get lights.  And the shower is lovely too.  Let me show you.  It comes complete with Charlie, our cat who can’t resist being with people.

So we have a lovely light and bright wet room.  I love it.  We also have a closomat with a rather fetching seat above it to help  me  get off. I can still walk but struggle to get off things without handles! My lovely occupational therapist provided the closomat and seat.  I don’t need the closomat yet but fantastic to have it when I do.

Janice also provided the stilts (I don’t know what else to call them) that gets my sofa higher.  I am so grateful to my husband’s aunt who turned my 20 year old tapestries, that had been folded in a drawer, into gorgeous cushions. A lot of people are lovely to me.

So the work has been done on our wet room. And I nearly have a fetching ramp too.  Builders were at work last week.  I can’t show you the new ramp as it is currently under blue tarpurlin. This is for when I need a wheelchair . Although handy for me now too as I struggle with steps without a bannister

We also have wider doors dotted around.  And excitingly we should get a through floor lift this month. More work required but just great to have.

I have had really gorgeous visitors lately. Not least Gina who I have known since we were babies.  Well I assume so as she certainly features in a photo of my second birthday party. I loved catching up. Then I also saw Anne and most of her family. I have known Anne since we started primary school.  She is a GP now but we didn’t talk about my illness at all. Perfect. I really loved seeing them.

Last week my sister-in-law, Jane, flew up for a night.  I love her to bits. We saw her on Tuesday evening and again on Wednesday morning when she brought along another sister-in-law. It was great to see them. And Robin will come and cook something that my husband won’t ..

My mother sometimes turns up out of the blue and often tells me that I sat on a potty (I am sure I was under two) and said ‘potty wee wee’. It makes me laugh as I am sure I have said lots since!

I have a new symptom now. My head tilts.  This is annoying but I knew it would happen as even before I was diagnosed I was aware my neck wasn’t quite right.

i will show you a photo so you can see my neck tilt. I should get a collar soon.  My MND nurse has ordered one and I should get an appointment with orthotics soon too. I have to say I was taken aback by how skinny I look.  We are all aware I have lost two stone but I don’t often see a photo of myself.

So you can admire my head tilt and possibly be dismayed at my skinniness. But I am alive and that is lovely and I can still move all my limbs.  Yippee.  There is so much to be thankful for.  I am sitting on my riser recliner the council provided.  Brand new and goes with our other furniture.  Just great.

Look around you.  You never know what is round the corner.  There are lots of things I love.  Of course I miss chatting away but my Predictable App is great. I miss eating too but there are little bits I can manage.  I love the friend who says she looks through cookbooks to find things I might manage. Thank you Pam.

My children loved songs with stories when they were a bit younger.  Both are at University now one doing a masters and the other in the first year of his degree. They were not that much younger!

i don’t know if anyone remembers this song but my children loved it. Camouflage by Stan Ridgway.  I heard another song they would have loved. El Paso by Marty Robbins.  They are both tragic but that is what my children loved.  I hope you enjoy them!

Let’s talk about our cat

A few months ago I discovered a cat had been a huge asset to someone with MND and wanted one myself.  So we got Charlie.

He was a rescue cat, just over a year old and had had to given up due to a child’s exzema.  He was also neutered. We looked at other cats there.  Most were sleeping but Charlie was very good at selling himself.  I wrote about our slightly clandestine approach to make sure we got him here. He is definitely a people cat.  He likes to be with us as much as possible.

We got Charlie a bed in case he wanted to hide away.  He has never used it.  Hiding away isn’t something that appeals to him.  People do though.  I think I can show you a photo of our cat two days after we got him.  I think you can say Charlie was relaxed.

One of my sisters in law suggested writing about Charlie.  Of course it won’t just be about him.  I wrote about serious stuff last time but this is really light relief.  Alas we don’t think our cat is very clever.  But he does have enormous fun inside the house trying to leap up and catch leaves blowing outside.  He makes up for it by being very sweet natured.  Most of the time.  He is with me as I don’t torment him.

We have a piano downstairs and Charlie has had a few accidents as he slithers off the lid.  He hasn’t yet mastered that trying to trot across a slope doesn’t work.  Especially when it is smooth and shiny.

I like the fact that it doesn’t matter to Charlie that I can’t talk and spend most of the time with folded kitchen tissue in my mouth.  He still makes use of my lap frequently.  And he is lovely and warm as I get cold recently.

I don’t remember the first cat my family had which is a bit sad.  He was called Vodka and I am told he was very clever indeed.  He used to be able to turn a tap on to get a drink. Next we had Rupert who wasn’t as clever but very sweet.

He used to meet us at the bottom of the drive when my brother and I got off the bus from primary school.  We had a gorgeous quite big Springer Spaniel called Rowan at the same time.  Rupert, as a kitten, would lurk on verges and leap on to one of Rowan’s long ears.  It can’t have been nice but Rowan would carry on walking.  It paid off in the future as Rowan would lie on a stump and Rupert would bring him mice and small creatures for his delectation.

Next we got Dusty, named by my youngest brother.  He was also sweet.  However I was away from home for most of his life so didn’t know him so well.  And now we have Charlie.  We didn’t get him as a kitten.  But he was the perfect cat for us.So what if he is quite thick.

A lot has changed since my last blog post.  I now have a rather snazzy pillow lift.  Do watch the video with that link.  We have it on our king size bed. I know a lot of people don’t like them but it works for me.  Sadly I am tall so tend to slide down the bed a bit.  We have an interesting board and pillow combination at the bottom of the bed to stop my feet poking out from under the covers.  Although I start the night with my feet against the pillow.  I end up with squished feet by morning.  My OT arranged for the pillow lift.

One day soon I will trot round the house and show you all the stuff my lovely OT, Janice, has arranged.  I have a surprising amount despite being steady on my feet.

The biggest change has nothing to do with the OT.  I can swallow but my tongue is very weak and I struggle to move food back.  For two weeks now I have been fed ensure 2cal and water through my PEG.  I can barely manage anything else.  The best thing is I have five a day and am gaining weight.  Yippee.  Thank goodness I got my PEG early.  I don’t want to give up food totally yet so I am hunting for something I can eat.  There must be something.  I just need to find it.

I get the ensure 2cal 3 times a day and it is gravity fed.  You can have a pump overnight and a dietician suggested I could just give up two hours every morning.  No chance.  It suits me as it is just now.

Now let’s appreciate our cat again.  He has taken to hiding ready to bounce.  He is especially fond of feet.  So the next photo shows Charlie trying to hide under a rug.  My husband thinks he will trip me up one day.  I think it is unlikely so do watch this space.  Charlie isn’t that good at hiding!  It would have helped if I had managed to reduce the photo.

I don’t give my husband, David, as much credit as I should.  It is difficult to describe how much he does.  He is always on the look out for things to help me.  I know have a much bigger phone as he reckons it will help.  I think it does.  But there is so much help he offers so I am going to finish with an appropriate song for him.  The Best by Tina Turner.  I looked at a lot of videos and Tina Turner always has very short skirts.  Well, dresses even.  I never wore short skirts even when I was young!



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.










Cars all over the place

I am slightly obsessed with cars just now.  After the excitement of being allowed to drive an automatic and then getting the go-ahead from the Driver Assessment Centre it was time to decide on a car.  I decided I needed a small car rather than the estate car I had been driving.  So, it was time to look about.  My husband is more gripped by cars than me so he keenly looked for the best small automatic cars.

So, a few weeks ago, on a Friday, we tried a Ford Fiesta which had lovely light steering but I loathed the steering wheel.  It is difficult to describe why if you haven’t problems with your hands but it was far too chunky for me.  My husband was disappointed but keen to have a look at the next car on his list.  So the next Tuesday we test drove a Volkswagen Golf.  This has no handbrake.  Yippee.  I struggle to take handbrakes off now.  Better still,  I really enjoy driving it.  So that is the car for me and we got it on the 30th of November. It is so very exciting to have a car I can drive again.

This has all made me think of cars I have known.  I started learning to drive in a landrover.  My father patiently took me out in it.  You certainly couldn’t go fast, and excitingly you were also higher up than most cars on the road.  I remember overtaking something.  Staggering in a landrover.  Just how slow was the other car going?  I could see there was nothing coming but my father was still telling me something was wrong.  I carried on overtaking happily.  Sadly it turned out I had been far to close to the other car.  Whoops.  I was lucky not to hit it.  Fortunately I have far more spatial awareness now.

Let’s go back further.  I can’t remember how old I was but probably about six.  My father drove to local paper shop for the Sunday papers.  Very exciting as we were also allowed to choose something sweet on a Sunday.  It had to be no more expensive than a Mars Bar which was my father’s sweet thing of choice.  We used to go for the longest lasting thing we could find.  We drove down, got the sweet stuff, and the paper, and set off home.

I was strapped in the back with snazzy blue straps but my father wasn’t wearing a seat belt (it wasn’t compulsory then and we were driving a very short way).  We had stopped and indicated for our right turn when a car going the other way overtook and ran straight into us.  I was fine but my father was really badly hurt.  There was a phone box on the corner and someone called for an ambulance.  This was long long before mobile phones.

A sweet little old couple drove me home.  I hadn’t ever met them before and wasn’t sure they weren’t kidnapping me.  They weren’t.  It must have been a huge shock for my mother when she heard what had happened but at that age I was just glad to be home and sure my father would be alright.  He was, after all his wounds had healed.

When we first got married we lived in Germany for a couple of years.  I drove a very old and vast Mercedes.  It was fast but took a long time to get going.  We had a hill early on in the drive out of the village and I would find several cars overtaking me as I negotiated the hill.  I was faster than a lot of them when my car got going, it just took a long time.  It was a fabulous car to drive despite it’s age.  Sadly we had to sell the car when we moved back to the UK but we were in our twenties and had a great time in Germany.  I love autobahns!

We had several quite boring cars though I must tell you another crash story.  I had taken the children to the Black Isle Show.  If you read that you will realise it is an agricultural show but I loved it as a child so went back.  My children loved it too.  We were happily driving home when the cars in front of us stopped abruptly.  I did too.  But the car behind hit our car and pushed us into the car in front.  I think it was so busy with everyone returning from the Show.  The man behind was horrified and kept saying, including to the police who came along ‘I only drank orange juice at the show’.

The police tested him all the same.  He was fine.  Once everything had been sorted he asked if we would go to the Highland Field Sports at Moy.  We thought we would.  At which point he said ‘I might see you there’.  As he had run into the back of us I really hoped we wouldn’t see him.  We didn’t.  Phew.

At one point, still in the UK, my husband fancied a Volvo C70.  It was a brief relationship as none of the rest of us liked it.  We may have had it for a year.  Half the family felt sick in it and no one liked sitting in the back with the roof down as it was seriously windy.  Nevertheless I think it calls for a picture of our disappointing car.  It is a shame as my husband loved it.

It was certainly sleek.

My absolute favourite car was bought when we moved back to Germany at the end of 2000.  In June 2001 we bought a Volvo V70.  It had two child seats in the boot.  Absolutely perfect for when people with children came to stay.  Children adored being strapped into the seats in the boot and enjoyed waving to people.  I suspect they pulled funny faces too but I am not totally sure. It was a gorgeous car that we only sold when we got my lovely new Golf.  So we got over 15 years of use with it.  I hope it has gone to a good home.  Volvos seem to go on and on.  It was such fun.  Admittedly children  squabbling in the boot was not ideal.  But at least I couldn’t see their faces to know how furious they were.

I thought of ending with a song about cars.  But I heard something far more fun, and not at all Christmas related.  Who recalls ‘Remember you’re a Womble’? I don’t think I remember them on Top of the Pops but how fantastic they were.  And look at all the people dancing and singing along.  I was happily following a few links and discovered the Wombles were at Glastonbury in 2011.  I won’t give you that link too but just amazing they were there.  The link I have given you was from 1974 and you have a chance to look at Noel Edmond’s medallion.  Luckily we were far too young to consider such a thing but I am guessing it was all the rage in the early 1970s.













When a week becomes interesting.

Sometimes you know in advance your week is going to be really busy.  The week before last, and last week, were exactly like that.  Whoops, it has taken me too long to write this.  Really three weeks and two weeks ago now.  Sorry.

On the first Monday we had an appointment with the Driver Assessment Centre in Edinburgh.  That is quite a drive from where we are but there were compensations.  We set off at 9am for the 1:30pm appointment to allow time to stop at The House of Bruar for a snack.  We weren’t interested in the luxury stuff you can get there, although I am obsessed with the food hall despite all the stuff I am unable to eat now.

What we wanted was the restaurant and our careful timing enabled us to arrive while breakfast was being served.  My husband had egg and sausages in a roll.  I had a yogurt.  It was a lovely high calorie yogurt but I do miss the things I could have eaten a few months ago.  I would have gone for the continental breakfast which looked lovely, and my favourite thing, you helped yourself.  Not to be now but it was still a yummy yogurt.

Fortified by our snack we carried on to Edinburgh.  Now these things take a bit of planning so we arrived with water that could go through my PEG and a 400 calorie drink that could too.  No week is complete without forward planning and we had done well.  So, off we trotted into the Driver Assessment Centre.  I was totally gripped.

We had read about it in advance so knew that would be a variety of tests then, potentially, the chance to drive round Edinburgh in a car they thought would suit you.  Definitely not your own car.  No wonder I was fascinated.  I started with reading numberplates.  Easy peasy.  Then came various mental and concentration tests.  I enjoyed those too.  Well, one comparison was tricky but the rest were lovely.

It got more fun when I had passed those tests.  Next came reaction tests in a mock up of an alfa romeo automatic.  I had to get the hang of one foot for braking and accelerating as I had never driven an automatic.  The lady testing me congratulated me on getting every test right and within the time too.  Yippee.  I could be let loose in a car.  First it was a manual car but then I changed to an automatic.  It is quite weird driving a car you are not used to.  I wasn’t great in the manual and I had a little mishap in the automatic when I used my left foot to brake.  Whoops, it was lucky we were still in the hospital grounds as we came to a very abrupt halt.

It turns out you have to drive for an hour to satisfy the DVLA.  That was 14 miles round Edinburgh and I am really a country girl.  So much traffic and so many lanes! Not what I am used to. Are you agog to know what I was told? I thought I might be told no more driving.  But that wasn’t it.  I was told not to drive a manual car.  But I can drive an automatic.  Half a win really.  I do need a couple of lessons too.  Then we trailed home.  We stopped on the way for me to enjoy a yummy white pudding in Aviemore.  That link is quite illuminating – and mine, of course, came in batter from a chippy.  I always love them.

On the Tuesday we were off to Aberdeen.  But first I fainted.  I felt dizzy at breakfast so foolishly got down and tried to make the sofa.  Now I can’t talk.  My husband hovered behind me querying what was wrong.  He guessed a variety of wrong things but then he guessed I was dizzy.  I nodded at that, and then keeled over face first into the floor.  The first thing I knew was when I found myself lying on the carpet.  Not an expected aspect of my week.  I acquired a carpet burn on my nose and some interesting bruises on my cheek and nose.  Oh, and round my eye.  I obviously looked gorgeous modelling my bruises.  Nevertheless we headed off to the MND clinic in Aberdeen.

They were great.  Although shocked by my bruises.  People fall with MND but I had fainted for variety.  Oddly, I don’t yet fall over.  You can imagine how fetching I looked.  They were very helpful too with suggestions to help my problems.  But bemused by my fainting.

The rest of my week was much more lovely, seeing friends, exercising a bit, and happily eating more.  But last week was really exciting.

We jetted off from Inverness to Gatwick.  OK, hardly impressive travel.  But wait till you find out why we were doing it.  We saw my daughter graduate.  And had a gorgeous time staying with my aunt and uncle for two nights.  Our daughter looked beautiful and it was such a treat to see her graduate.  We also saw an amazing man get an honorary fellowship.  Look at this link.  He had a robe and so did his two assistance dogs.  He was seriously inspiring.

It was such a lovely week.  I had the graduation on my wish list and made it.  Yippee.

Last week has been wonderful too.  We saw a helpful doctor about my drool.  You really don’t want more details than that but I am trying to sort it.  Kitchen tissue stuffed in  my mouth is not a great look.  Efficient though.

The best thing about the week was seeing family.  I saw both brothers, my mother, and one brother’s family.  Yippee.  Apart from my mother, who quizzes me about how I am, everyone else knows my favourite thing is to be chatted to normally.  Yes, sometimes I end up behind the conversation as I can’t type quickly enough with my app.  But I love normal chat.  I love hearing about everything.  Who cares if I have to delete words of wisdom sometimes?  I don’t.  Predictable is a great app all the same.  I adored seeing family.

I had a wonderful Friday too.  As a condition of the driver assessment I was committed to lessons in an automatic car.  The first was on Friday.  Excitingly I got away with a single lesson.  I am safe in an automatic car.  Hurrah.  The driver assessment centre need to give the go ahead when they get the form from the driver instructor and then I can drive again.  Just wonderful.

Now I have got back to exercising too.  When I get up I roll back and forth, rock, and crawl.  For further information on what on earth I mean, please see this post.  I also use my shoulder pulley.  I love it as I can’t actually raise my arms that high normally.  If you look carefully you can see I haven’t totally lost the bruise under my eye from when I fainted.  But my nose is now fine.


I use my exercise bike in the morning still, and my lovely new trampoline later in the day.  Today I am trying out arm exercises too.  My legs are much stronger than my arms and I realised it was time to do more for my arms while I can.  I can’t report on the new exercises yet, so you get to see me on my trampoline instead.  This is me keenly moving one leg then the other without lifting my toes!


Sadly it refused to let me trim the photo this time so you get to see unnecessary bits and pieces too.  I am sure exercise helps but all I can say at the moment is it makes me feel much better to be using muscles I still have.

I must finish by introducing you to a funny little 60s song.  At the time I was totally unaware of it, and quality of the video isn’t great but it did make me laugh.  And you probably haven’t heard it before.  So, let me introduce Little Arrows to brighten your week.

Let me also say – embrace your week whatever it brings.  Even my fainting made me laugh.  I really looked quite odd in a battered and bruised way.




Age doesn’t matter

When I gleefully started my blog it was all going to be about being middle aged.   So, let’s think about age.  After all, this is meant to be about middle age not just having MND.

Is there anything wrong with any age?  The one thing I have learnt with MND is that it can strike at any age.  Not, as far as I know, in childhood, but there are people far younger than me with the same disease, and people far older too.  To start with, I have to confess how jealous I felt of people being diagnosed in their 70s or 80s but that way lies madness.  I wouldn’t have chosen to have MND but hey, I have it and just have to live with it.  It helps me to read masses and I am usually pretty perky but everyone has to find what works for them.

I wrote about age early last year when I had no idea there was anything wrong with me.  Have a look at what I said then.  There are some fantastic heroes to be found of all ages.  I stand by the people I suggested in my earlier post, but have a look at your friends and family and I am sure you will find really inspiring people.  They are all over the place once you start looking.  I am amazed by how many of my friends take the time to see me and wait thoughtfully while I use my app to speak for me.  It isn’t just friends, all sorts of people round the town know I can’t speak but also understand that there is nothing wrong with my brain.

I had to have a blood test this week and the nurse doing it described me a ‘sharp cookie’  It could have been condescending but I was actually flattered.  It takes thought to appreciate what I know when I have to rely on an app to speak for me and slowly type stuff in.

This time I am not going to suggest heroes of different ages.  I want you to look at your own friends and family.  I have a lot of wonderful friends, and superb family members too.  No one has drifted away from me yet, despite what I have.  Just wonderful. I have a mass of inspiring people in my life.

My friend Kate (the physiotherapist I did a question and answer post with a few months ago) came up to Inverness for the weekend.  She was wonderful.  She taught me a couple of useful tricks to try.  One involves stretching my fingers and the other was a top tip when I have a coughing fit.  Yippee.  She also coped with the kitchen tissue I often have in my mouth.  I must sort my drooling soon!  It isn’t a really attractive look.  Very handy though.

I have mentioned Dagmar Munn and her blog before as I am hugely impressed by it.  She bounces.  I wanted to bounce too.  Look at this post of Dagmar’s and will see why I was keen.  It looks such fun.  Have a look at her video too.  I may have wanted a special trampoline but how could I afford it? Then my lovely mother gave each child some money.  Yippee.  I could get the exact trampoline.  Here it is sitting proudly in our bedroom  Notice the exercise bike peeking out in the background.  I use that too.


Will it help me reach a greater age?  No idea, but I love it.  I am building up slowly so two songs on my phone at the moment.  Dagnar Munn manages twenty minutes so I am hoping to get there too.  I love having a goal.  Hopefully you do too.  Next time I may stun you with a picture of me on the trampoline.  I showed Kate and she couldn’t resist having a go.  Luckily she was impressed.

With MND things sort of fall into your lap.  It is rather lovely.  MND Scotland give me 10 free massage sessions.  Just gorgeous.  The local hospice give me six free reflexology sessions.  Also wonderful.  I have a bar on the bed to help me get out.  And last week I got a second bannister.  These things just materialise.  Perfect.  I must show you our two bannisters.  It is a bit of a dark photo but look.


A joiner just arrived and installed the second bannister.  I don’t need it yet but it is lovely to have.

Are you wondering what age has to do with any of this? It hasn’t much really.  There is lots of longevity in my family and I always imagined I would reach old age.  It is unlikely now.  But that isn’t a reason to give up.  There is so much fun to find once you look.  It doesn’t matter what age you are.  My children are both at University now.  One has just gone and the other is doing a masters.  I am so proud of them.  They are both having a lot of fun.

I know people of all ages who are having fun.  Age is immaterial.  I love the people who go out and find the fun.  But you don’t even have to go out to have fun.  I would love everyone to find some fun every day.  It is so lovely to laugh.

I love finishing posts with a song and I suddenly remembered Itsy Bitsy Teeny Weeny Yellow Polka Dot Bikini.  Did you know Brian Hyland was only 16 when he had this hit?  I sidled off to look for a video.  The quality isn’t great but this is a very weird video.  Do take a look.  I hope it amazes you.