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. https://www.justgiving.com/James-Boag1?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=James-Boag1&utm_campaign=pfp-share
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.
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.
Cliff or Plateau
I have been thinking about MND a lot lately. People had always mentioned cliffs to me. You are drifting along happily with not much changing and suddenly, whoops, a big change and you feel as if you have fallen off a cliff.
It doesn’t matter which form you have, it just happens. I heard a short poem by an incredible man called Mark Stone on Radio 2 when we thought this was what I had but weren’t yet sure. He started with limbs but it really describes what it is like:
snip, you can’t keep up with your family in the street;
snip, you can’t control your foot against the rip at the beach;
snip, you can’t drive;
snip, you can’t do the stairs without using the banisters;
snip, you’re no longer safe in the shower;
snip, you need crutches outside;
snip, you can no longer visit your parents’ house;
snip, you can’t get to your kids’ rooms;
snip, you’re breathless every time you walk;
snip, you need a wheelchair;
snip, you can’t get into a normal car;
snip, you can’t get into your own house;
snip, snip, snip…
If you want to know a bit more about Mark, who sadly died earlier this year, do read this
You do get plateaus too. Hurrah. For ages I knew my voice was deteriorating but nothing much else was changing. Of course my voice has gone totally now but armed with my Predictable app I can still communicate. I wrote about the app here
so don’t need to bore you again. The only thing I would change about is the fact that if you type the wrong letters it doesn’t realise. Fantastic if you get the first couple right though. I quite often get a row of Ls as I try and delete letters but get the L key instead!
So what sort of cliffs have I fallen off? The big one was obviously losing my voice but it isn’t as if it was a surprise. It took the best part of a year to vanish totally. Maybe not a cliff at all then. My greatest sadness, and therefore a cliff to me, was when I suddenly realised I could no longer eat my beloved pork pies. The horror. One day I could and the next day I could only manage the pastry. Oh, woe is me. Now, I couldn’t even manage the pastry but it is amazing how you adapt as you go. I am getting the hang of eating high fat snacks again. So, is this another cliff I have tumbled off?
I normally gleefully drift through life in a happy haze of contentment. Even MND didn’t deter me. There is still so much to enjoy. Three weeks ago I went into hospital to have a PEG fitted. This is just a feeding tube ready for when I can’t swallow. I can eat but the fact I can use it for water is very exciting. Sadly I picked up an infection so the following Friday I was back in hospital. Two weekends in a row in hospital. Ho hum. Just till the Monday this time though. I came out with interestingly swollen calves and feet. I had to walk out of hospital in rather attractive fluffy slippers. I hadn’t a hope of fitting shoes on. I am not sure you can really tell but these were my feet a couple of days later. They seemed to have lost their shape!
Two days ago I got my shoes on again. Yippee.
Truth be told all of that knocked me for six. I have lost weight (not good) and weakened quite a bit. Another cliff? Maybe not as i can still do everything. It is just slower. Much slower. I sort of miss my pre operation self and the things I could do then. It is nearly a month since I got my PEG and then I got my infection too. Is this another cliff? It is to0 early to say. The biggest thing that has become apparent recently is that long car journeys take far more planning than we had anticipated. We happily set off for York assuming I would always find something to eat. Not true. The biggest problem was breakfast. I ended up with a yogurt as that was the only thing I could eat. Not good when you are meant to be cramming in calories It isn’t really a cliff as although I can’t eat a lot now there are some lovely high calorie snacks I can do. Hurrah. And some things the dietician is astonished I can manage. Like crackers and most crisps. Not healthy but very yummy indeed, and a lovely crunchy change from all the smooth stuff I eat. Crispy bacon too. There is a lot to enjoy.
So what can’t I do? I could do it before my operation but I struggle to get up from the floor now. I can do it but it involves the stairs if I am downstairs and I can use a chair upstairs. It takes ingenuity but imagine giving up. It is all to easy to accept your muscles weakening and just move to the next stage. I know I could do that. It is obvious that at some point I really won’t be able to get up from the floor at all but it isn’t yet.
I am a huge admirer of Dagmar Munn. I have mentioned her before but do look at her blog here.
She really is worth reading about. It is a really sensible blog. So I do still exercise. Not anything like someone healthy but enough for me. Exercise bike, a bit of rocking on the floor and even a shoulder pulley on a door. I love giving it a try and seeing what I can manage. A regular question is whether I need a stick to walk. Not yet. I may be slow (I slightly crave the trampoline Dagmar Munn mentions in case it helps!) but I don’t need an aid to walk yet. I will but surely the best thing for everyone is to enjoy the things you can do. Please enjoy your life.
Oooh, a song to finish I think. I may have used this before but this is Try
by Dolly Parton. I love the idea of trying to be an inspiration. I will never make it to the top of a mountain now but that doesn’t mean others can’t try. Who cares about a cliff when I am here. Embrace your life please.
It was my birthday on the first of July which made me realise I have passed a few of the small milestones I had set myself. I think it is inevitable that when faced with a terminal diagnosis you find yourself setting small goals that you hope you will reach. I had no idea what to expect when I was diagnosed, although I did read that half of patients die within 14 months of an MND diagnosis. Gulp. You can see why I have a series of little targets.
I was diagnosed on the 25th of November so inevitably my first small target was to get to Christmas. That wasn’t really in doubt but I wanted to start with something I was pretty sure was achievable. In March we moved back up to Scotland so my small hope then was to still be able to drive. In fact I can still drive now. Yippee. There is so much to be thankful for. There was a bit of a gap till my next little goal. My daughter was sitting her University finals in May and my son his A levels in June. I was hoping like mad that my illness would not disrupt either of those major exams. It didn’t. Definitely cause for another small celebration. Actually, more a big celebration as we discovered last week that my daughter got a 2:1. Just fantastic.
You may have already guessed that my next small goal is to still be alive when my son gets his A level results. Coincidentally it is the same day when we celebrate our 26th Wedding Anniversary. So, 18th of August here I come. Hopefully. Inevitably I have a whole range of other small goals lined up in a row, but that is the next one. I do hope you all have things to look forward to.
I have always had things I am really looking forward to. The only difference my diagnosis has made is that things are now closer together. I used to look forward to something some time in the future and now I am more likely to hope to be alive for something quite close. It is slightly odd but still just as exciting when I reach each small target. Even more excitingly I am still doing so much more than I thought I might be. OK, so I can’t talk, but I can still do so much else. When I was diagnosed we really thought I might need a carer by now. I don’t yet. Life really is good.
I would be lying if I said not speaking was my only problem. My right hand is weakening too. I can still do everything but my writing is now shocking, although legible. I also cough and splutter more than I would like but those things are so minor compared to what I could have. And I do, excitingly, have a new tool to show you.
My husband found this in Inverness last week. I haven’t yet found a lid it will fit to unscrew but it is a much safer, and equally efficient, way to open ring pull cans compared to my knife technique. The bottom bit is superb for my beloved cola cans. You can’t really see it but it works superbly.
It says it is a five way opener but I have only used two of the methods so far. I think it is my new favourite small tool. And I will find a lid it will fit at some point. Surely.
Two weeks ago I had my starry bit in the local press. OK, starry is overdoing it. But yesterday my husband and I were enjoying an afternoon walk when a lady stopped us in the street and asked if I was the woman she had read about in the Forres Gazette. Well, yes, I am indeed. She said nice things about the article and I am always thrilled to know people have read it and now know a little more about my form of MND. I know this is gratuitous and that I linked to this in my last blog post too. But …
Here I am in the Forres Gazette
We had the decorators in two days after the article and they mentioned it too. I am not sure it counts as fame in the town but definitely a bit of MND awareness raising. I am thrilled to bits. I want as many people as possible to know about MND and definitely about bulbar onset.
There is one odd thing at the moment. People keep thinking that because I can’t talk I must be deaf. Hmm, I need a new card I think. This is the one I have at the moment.
I didn’t think of the words for that one but I think I now need something to say that I can hear and understand, just not speak, and I may be a little slow doing things. Hmm, actually perhaps not, as that slightly sounds as if my thought processes will be slow. Any suggestions of a better card will be gratefully received. It just has to be small.
A lovely lady serving me in Tesco last week wrote down the amount my shopping came to. Very sweet but totally unnecessary. It wasn’t just that I could hear. It was also displayed already. My theory is that people just don’t know what MND is. It is time they did! I may need to get hold of an MND Scotland T-shirt. In fact, maybe the whole family need them. Now there is a thought.
MND Scotland T-shirts
It is difficult though. I hope people would realise there is a link to the disease if we all trotted around wearing the T-shirts. Sadly white just isn’t my colour. It would be worth it to support the cause though.
The moral of all this is that life is so much more fun when you have lots of small things to look forward to. Give it a try. Don’t just look forward to big birthdays and celebrations. There are lots of little things to enjoy along the way. I suspect I need something closer than the 18th of August. I know. We will get a new kitchen this month. That is my next goal. I want to enjoy my new kitchen. I want to be able to use it. Do have fun finding your own small goals. It is far more fun that you might imagine.
I think I need a song link now. I haven’t had one for a bit and this makes me laugh. Bobby Darin wrote it for a dare. Who knew you could write a song with ‘Splish splash, I was having a bath’ as the first line.
This is an exciting week for me. It is MND awareness week in Scotland. I think the MND Association have the whole month. Do have a look at their shortened stories. I think they are brilliant, and really thought provoking.
So, I am sure you are asking, what have I been doing? Actually, you probably aren’t, but I do like to dream. I have actually been doing my own little bit to raise awareness. And some was my doing and some was due to MND Scotland. So on Monday I was in the Press and Journal thanks to Niamh Callan from MND Scotland. You can see the article here. It uses the photo I am about to show you.
So, there I am in Edinburgh in January. I promise I wouldn’t be wearing quite as many clothes now. I look very rounded due to my multiple layers. Well, I probably wouldn’t wear as many now but I can’t promise. I am very attached to many layers of clothing but have ditched the sheepskin gloves for the time being. I could blame MND for making me colder but in fact I have always felt the cold. I just have a better excuse now.
Excitingly, my striped fingerless gloves have now been seen so often that people want to get me more. Yippee. I do have another pair but they are black (boring) and come too high up my fingers so I have to take them off to do anything. That is far from ideal. I have visions of a happy life with a choice of fingerless gloves. Yes, I know it is summer and therefore not the perfect time to look but I can’t wait to be able to model a succession of attractive hand wear.
I reckon I need to do more to raise awareness than just wearing a variety of fingerless gloves. It would be so easy if that alone worked but sadly I have to do more. In Wednesday I was in my local paper (it is weekly) The Forres Gazette. Very excitingly I appeared on the front page too, to lure people in. I am hoping this really will increase awareness. At least in Forres it should. So, Forres then the world. Do you think it will work? Everyone has to start somewhere. This was part of the banner on the front page of the Forres Gazette on Wednesday.
A different picture too. You have seen that one before. It is my way of raising awareness by showing you can look healthy but have MND all the same. It is amazing how many people think because I can’t speak I can’t hear either. Obviously I can. I don’t need a thumbs up gesture, honestly. Words are fine. But actually I am just enchanted when people help me. If they want to do thumbs up, so be it.
Here is the actual article. There is a certain amount of cross over with the Press and Journal article but definite differences too. See what you think. Will it be enough to raise awareness? Now I need suggestions of more things I can do to raise awareness. What do you think? I am far too pathetic to try a sky dive or anything like that. I could try walking but I am not totally sure how long I will be able to do that. Although I certainly can at the moment. Oooh, perhaps I can send other people out to raise awareness instead and just cheer them on?!
As you will see from the Forres Gazette article, I finally set up a Just Giving page earlier this month, with a £500 target at the moment all going to MND Scotland. I would love more, but £500 would be a lovely start. So, yet another link, and this time to my Just Giving page. It is fun to look and see what I wrote for that, even if you don’t fancy donating (see, I really am out to raise awareness).
Why MND Scotland? Well, I am in Scotland and they have been incredibly helpful. But it is also a great source of funding for research. Yet another link, but this is great, all about MND Scotland funded research. We also have the Euan MacDonald Centre in Scotland. The amount of research going on in Scotland is really exciting. Hmm, I think I may have got slightly carried away with links in this blog. Do have a look though. So many really are worth a look, especially during MND Awareness week (month if you are in the rest of the UK).
I can’t quite bring myself to include another link although I am itching to do it. Luckily I have linked to Liz Ogg’s blog before. We both have bulbar onset MND. There are quite a few fantastic MND blogs but not that many started by someone with bulbar onset. I can’t actually think of another apart from Liz’s. This isn’t a surprise as the prognosis is particularly bad for this form. Hence my desire to raise awareness of this form. People are far more likely to think of an initial problem with a limb rather than speech. Truth be told, limb onset is more common. But you all know about this form now. Hurrah, my awareness raising is working.
Wow, this is the second week in a row where I have got more serious, so let me throw in some of the fun stuff I have done this week too. I had one of my sister-in-laws to stay for two nights. Just gorgeous. It entailed several renditions of ‘All the single ladies’ on her part. I promised no more links, which may be appropriate in this case, but it was highlight of her visit. So were the descriptions of her Noddy outfit when fancy dress was called for at University. I can no longer tell stories unless I write them in advance but I love love love other people’s tales, and these were just great.
We had a four girl visit to the wonderful Mountain Cafe in Aviemore too. If you ever happen to be in Aviemore do go, even if you have to queue on the stairs. Just listening to other people chat is wonderful. I know I have said it before but I adore people talking to me as they would have done when I was healthy. So, yes, raising awareness is great, but what I want is to make people realise that someone not being able to talk doesn’t mean they struggle to understand or are deaf. Spread the word!
High Fat diet and exercise plan
I can’t tell you how much I love looking at recipes. My current dream is to find a recipe book entitled ‘High Fat recipes’ but somehow I doubt there is much market for it. As I wandered happily through Waterstones a couple of days ago I did see one book with almost the right title. Yippee I thought. Sadly it then transpired that it was encouraging people to eat fat to lose weight. Hmm, not the book for me after all. To be honest, I always loved menu planning anyway. I hate shopping but looking at recipes is lovely. This is from the banner at the top of a Good Food recipe I should probably avoid.
I think it sounds rather delicious but my daughter says she thinks celeriac is foul. But actually it is low fat and low calorie so definitely not a recipe for me as it stands. I could always have oatcakes with lots of butter on the side though and eat it only when my daughter is away.
You will have realised I have a problem. Low fat and low calorie recipes are not the ones for me. You see, if you have MND your dietary requirements may be quite different to your pre MND days. Let me explain a bit.
A few days ago my mother, daughter and I were having lunch in a Marks and Spencer cafe. We all had soup and rolls and very yummy it was too. While we were eating my mother said that eating toasties instead would make us fat. Hmm, actually quite unlikely as none of us are overweight, but for me a toastie would probably have been a better lunch. No, honestly. I am amazed I have maintained my weight since I was diagnosed seven months ago. Because of my bulbar onset MND I eat very slowly so I have done it by having three meals and two snacks every day. If I miss a snack I lose weight and then have to try harder the following day to get the weight back. It is a bit counter intuitive, to say the least.
A couple of months ago I asked the MNDA (Motor Neurone Disease Association) about diet, and this is what I got back.
Thank you for your question.
With regards to the effect diet may have on MND. We aware of a small study carried out in the USA which highlights the potential benefits of eating a high calorie, and high carbohydrate diet. The studies findings were published in The Lancet in February 2014, and although the researches acknowledge that there need to be further studies, it appears that the initial outcomes of the study were quite positive.
A brief outline of the findings were as follows –
Loss of weight, both muscle and fat, is common as ALS [MND] progresses, and patients experience more difficulties eating, swallowing, and maintaining their bodyweight. Recent work suggests that these problems might also contribute to the course of the disease: patients who are mildly obese are more likely to live longer, and mice carrying a gene which causes ALS lived longer when they were fed a calorie-rich diet high in fat.
A good way of fortifying foods is to add cream and butter to things like mash potato. So it really is a matter of not watching the calories and eating a wide range of foods as you possibly can.
I do hope this is helpful Susan
It was! OK, so I was already eating pretty high fat stuff. If you eat as slowly as I do you tend to eat less, so need to cram in more calories in a concentrated form. I am incredibly fortunate that I can still eat everything at the moment, although I do have quite a serious fondness for savoury foods over sweet. This isn’t really a surprise as I always liked savoury foods better anyway. Sadly I failed miserably at being mildly obese but I am still delighted to have maintained my weight so far.
So, as I skip enchantedly from one meal or snack to the next, ensuring I eat a variety of food and plenty of calories, I can’t tell you how much fun it is not to worry about fat. Whoops, is it rude to have said that? In my pre MND days I cared far more about the fat content of foods but now the world is my oyster. Pork pies (yes, I know I keep mentioning them!), pate, cheese, lots of butter. All of these things are lovely for me. But most people can’t enjoy these foods on the gorgeous scale I can. Sorry.
But what about exercise I hear you ask. Well, I did mention exercise in my title after all. Now, bits of me are weakening but I can still do most things so let me introduce you to a new blog I have found and the wonderful Dagmar Munn.
Now, I actually think you can read lots of posts but there is one in particular I want to draw your attention to as I am having a go at the exercises.
One Exercise post
I had fun trying the four exercises this morning. In fact, although it is now afternoon I have a photo of me crawling taken just now. Because I can do it, it was fun to give all the exercises a try. This morning I wasn’t on the kitchen floor with my daughter’s knee featuring too. Then I was in my bedroom. As you can see my fingerless gloves appear yet again. I promise I do wash them.
I still cycle on my exercise bike each morning too. I know this is an old photo but I suspect I look just the same cycling now. Oooh, I hadn’t started wearing gloves when that was taken.
I just have the bike in my bedroom now. I have also starting doing 10 squats three times a week. Kate, you will have to tell me what you think! Kate is the lovely friend I did a question and answer post with here
I have no idea whether any of this will do harm or good but I love seeing what I can do. Oh, I can finish with a song link now. I haven’t done that for a bit. Nothing to do with a high fat diet but one of the songs that came up when I was on my exercise bike this morning. This is as corny as anything but another song to take me back to my 80s roots. I made me so happy to hear it.
Eye of the Tiger
That video made me laugh. I had never seen it before and not did I even know what Survivor looked like. It is very very 1980s.
This post has been a bit more serious than usual. It really is about my lovely high fat diet and my undemanding exercises. I have no idea how long I will be able to do any of this but it is SO fantastic that I can now. I did look lustfully at Dagmar Munn’s little trampoline too. £350 to buy here though so I don’t think I will bother but I am having a lovely time finding out what I can do. I think the moral of all this is really to enjoy what you can do in the here and now. You can’t know what is round the corner. Whoops, I really have got more serious.