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.
Smell the Roses
I know talking about roses is a touch trite but I have been thinking about them a lot. Roses seem to be everywhere at the moment and I just love seeing the colours. So let’s start with a picture of one of our own roses.
Obviously that is plain yellow but there are so many gorgeous colours around. It really is worth stopping to smell the roses. Admittedly it looks a bit weird if they are in other people’s gardens so those may be best avoided unless you know the people. I also know it is a well worn phrase to suggest slowing down and smelling the roses but I just love the idea of taking time to appreciate the beauty around. Not just roses but everything. There is a lot of loveliness to be found when you look for it.
I know I have been quiet for a month but that doesn’t mean I haven’t stopped to appreciate roses along the way. It does mean I have been rushing around and some of it has been due to more MND stuff creeping into my life. I spent one night in hospital to have my breathing checked. This was a very strange experience. Good bits included the fact I got a single room. Yippee. It meant I could decide when to go to bed.
The test involves a clip on your ear overnight. I was told you don’t notice. Not true! But I know I wiggle in my sleep a fair bit so that could be why. Well, that and a problem with the machine. It kept suddenly beeping tragically until I pressed the buzzer and someone came and recalibrated it. It finally accepted that it would work at 3am. Hurrah. Then I was woken at 6:30 for an arterial blood test from my wrist. This is not something I had ever experienced before. I always take normal blood tests in my stride but the nurse telling me it would be a slight prick was not accurate. Oww. Not that I said at the time. Well, I can’t speak anyway, but I could have used my app to moan.
I don’t really believe in moaning if I can help it. Hence my desire to think of beautiful things like roses. It really is far more fun than feeling sorry for yourself. OK, so I bounce around finding positives all over the place. Each professional I see asks me how I am feeling but I really am fine. I know I am dying but it doesn’t feel it yet. Oh yes, my overnight breathing test. The nurses were really lovely and coped admirably with my use of my app. When someone rolled up to collect the machine that had been recording my breathing and I told her it had beeped a lot overnight. She knowledgably said it could be when my oxygen levels dropped. I wrote that it was just a dodgy machine but I don’t think she believed me.
Not long after I was told my tests were all fine. Hurrah. The perfect result. No hint of low oxygen levels yet. No wonder I pranced off happily and admired all the roses I saw.
Next MND experience was to see a physio. That was fun. Well, I sulked a bit when I had to lie on a bed to be assessed but I did try to hide it. Apparently my elbows are fine! I already knew about my weak hand and shoulder so that was quite exciting. I am easily pleased. And I have some new toys to play with. I love the shoulder pulley to go over the door and I have an interesting squeezy thing for my hands too. I told you it was fun.
Yesterday I saw an Occupational therapist for the first time. All sorts of professionals are cropping up in my life. I really liked the Occupational Therapist. She looked round the house. Whoops. I should have cleaned before she came.
It is slightly daunting thinking about things I don’t need yet but will in time but I know it is worth doing. So, first things are going to be a second banister on the stairs so that there is one on each side, and a bar in the shower for when I need to hang on to it to get in. I don’t need either yet but I am told it takes a bit to get anything so it is worth getting in good time. Oooh, and I forgot about a ramp up to the front door for when I need a wheelchair in the future. I told you it was planning ahead time. And there is a lot more than that in the pipeline. Definitely time to make the most of all I can do and enjoy it while I can, roses to smell and everything.
Now, time for a deep breath. In a couple of weeks I will get a feeding tube into my stomach. This is a very clear sign something is wrong. I can’t speak but I actually look healthy. Well, I still will. The tube will be hidden most of the time. Not many people see my naked tummy! This is very good news for all the people who don’t. I expect to be slightly shocked by a tube edging out of my stomach, but it is worth doing before I lose the ability to swallow. I will lose the ability to swallow at some point so the tube will be ready for when I do. Let’s think about perkier stuff now.
I have seen lots of friends lately and several more are coming up in the next month. It is wonderful. They all know I can’t talk. Everyone just gets on with it and copes with my app. I have to get more adept with it. And remembering my glasses will help. I can walk without falling over so I have a lovely time getting out and about. Muscles are going to give up as time goes on so it is a case of seizing opportunities while I can. This is the perfect opportunity to introduce the song that inspired this blog. It probably isn’t what you expect.
The Roses of Success
How can you go wrong with a song from Chitty Chitty Bang Bang? The message in the song is great. Who cares if you make a mistake? Learn from it and keep trying. What a fantastic thought. Don’t give up when something goes wrong. Keep trying. I have to adapt a lot just now and it is great. I can do far more left handed than I ever imagined. So, my neurons are dying and muscles are stopping working but that is no reason to think the world is against me, or that life is unfair. It isn’t. Things like this just happen so please make the most of your life and have as much fun as you can. I know that is easy to say but no one knows what is round the corner.
I didn’t know MND was on the horizon but it definitely isn’t a reason to roll over and give up. Three weeks ago we got ourselves a cat. We headed off to the nearest SSPCA centre. OK, so we had nosed around there a couple of weeks before but this time our new kitchen was ready and we were all set to choose a cat.
All four of us headed off to look. We had keenly browsed the website in advance and were ready. We had just got out of our car when another family arrived. They wanted a cat too so we arrived at the cat enclosure at almost exactly the same time. Most of the cats were snoozing but one was really selling himself. He approached the glass, played, and did his best to look adorable.
The other family were smitten too. Tricky. My husband sneaked off and asked if we could have a closer look at the adorable cat. And reserved him. This was a wise move. Charlie still busily sold himself on release from his rather lovely living space. We loved him. So did the other family. But we had reserved him so he was ours. It was a shock to discover we could have him that day. We rushed off to buy cat related products. He is a really sweet cat. So you get to see a gratuitous photo of him on my lap.
Remember to appreciate beauty where you see it. I love roses so admire them at every opportunity. Remember that all sorts of things can crop up out of the blue too so take them in your stride and enjoy your life as much as you can. I intend to seize pleasure where I can. It is a lot better than screaming that life in unfair.
Let’s finish with a song to make you smile.
I’m a Believer
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.
Adapt as you go
I have been thinking about being able to adapt a lot lately. If you think about it, it is something we do almost from the time we are born. There you are, shooting out into the world and right from the start you have to adapt to your new situation. Almost everyone discovers very early on that crying plaintively works wonders. You want sustenance? Crying is the answer. You want to have your nappy changed? Again, crying is the answer. As a tiny baby crying works well for all sorts of things. But as a long term solution crying won’t get you far. You have to adapt. Crying is far less cute as a way to get things when you are six, let alone as an adult.
Now, my motor neurone disease means I am having to adapt rather more quickly each time a muscle weakens. And my adaptation tool of choice is frequently a knife. Some of this will be obvious to you. If I can’t open a packet a knife or scissors is the obvious answer but some things are probably a bit less obvious. Opening ring pull cans when your hand is a bit weak? Use a knife. I can even show you how it works. The funny thing about this is that I am not the only one trying this technique. I was chatting to a friend last week and discovered she does the same thing just because it is so easy. I wasn’t actually opening the can but you can see that I lean the knife on the side of the can. Very safe! You will also notice my beloved stripy fingerless gloves feature yet again.
I can use a knife to open cans of drink too. I was told cola was good for a slight problem with phlegm in my throat I have, and it really works for me. I just use little cans so this is me using, um, a knife for that too. Knives really are very useful at the moment.
I have had to adapt in other ways too. I always used to write a draft before I did a blog post but I can’t write for that long at a stretch now so as of the last post, I no longer have a draft. I just type. Eeek! I do love having a draft but I just can’t manage it now. Fortunately I can still write, just not for long in one go. Thank goodness for my app.
That reminds me of being at school. No, really. I never wrote drafts of essays then, despite the blandishments of teachers as they told us how useful drafts were. Then, one day I actually wrote a draft of a history essay and got an A+ for it. So, did I adapt and write drafts from then on? Of course not. I appreciated how well it had worked but it seemed far too time consuming to do it with every essay. My A levels were English, History and Economics for goodness sake. Think how long it would have taken to do drafts of every essay. Do I regret that decision now? Only slightly as I still got to the University I wanted. Admittedly those were the days when you got pleasantly low offers. I was asked for a B and a C with no mention of the third A level at all!
For the benefit of the ladies amongst you I feel duty bound to mention another way I have had to adapt. And that was putting on a bra. Do avert your eyes for a bit if you would rather not know. I can reach behind OK but I found I was getting cramp in my right forearm when I tried to fasten my bra. Hmm, how to adapt? I now do it up at the front and whizz it round to the correct position. For obvious reasons there are no photos of this, but it works wonderfully well. Luckily I can still undo it behind my back.
I do know that as time goes on I will have to adapt more, and even get some kit I can tell you about. For now it is just me and my own ideas of how to adapt and, as I said, those frequently involve a knife. Luckily not always. I don’t think a knife would help with my bra much! The thing about this disease is that over time more and more neurons keel over and stop working and hence the muscles stop working too. You just have to hope you can always find a way to adapt to the changes, or your family can.
I mentioned Liz Ogg’s blog recently but I really really want to mention it again. The latest post was written by her husband and is fantastic for describing how they have adapted since Liz was diagnosed. Please have a look.
A Carer’s tale
Liz has the same form of MND that I have so I find it fascinating. Some of it has to be an insight into things I will face too. Everyone with MND progresses differently but some of the description in that blog is bound to mirror stuff that will happen to me too. My husband might learn to cook too!
I have been having fun recently. I am going to appear in my local paper during MND Awareness week later this month. I sneaked in a mention of my beloved pork pies so I do hope that appears in the article. I do love them. That reminds me of my lovely friend Lucy. She knows how much I love pork pies and when I moved back thought she would arrange delivery of one to me.
This one in fact.
Then she realised that the butcher is in Forres, and so am I, so thought it would be like sending coals to Newcastle. I still haven’t tried that particular pork pie, but it looks delicious so I must. I have been doing a bit of a taste test as I go and have a particular favourite at the moment. But I am prepared to adapt and try more!
The moral of this tale is really do always be prepared to adapt. I am sure you are anyway. It is such fun to learn new ways to do things and then discover how well they work.
My Beloved App
I have had a really busy couple of weeks but the one thing I have really learnt is that I laugh at myself. A lot. It makes me laugh each time I adapt a little more to a slight weakness caused by my MND. Last week I had to get my husband to cut my toe nails as I just can’t do it. He said it reminded him of cutting the dog’s nails! No wonder I laugh. Luckily I can still do my finger nails. There isn’t much at all I can’t do at the moment though some things need a touch of adaptation. And there is one glaring exception. My speech has almost gone now so I am either writing or using my app.
I know I have mentioned my Predictable app before, here in fact. My speech was better then, of course. I took the app along for a trial run with my sister-in-law one day last week. I think it will end up being faster than writing if I just keep practicing. Spurred on by my sister-in-law I am trying to use it for an hour a day now. It does make me laugh too as some words come out very strangely. Most are fine but that ones that aren’t are very funny. It is also incredibly useful.
I went along to an MND clinic this week. As I live at the edge of the area covered it was a 77 mile drive each way. There was no waiting room so my companion and I were left in an office. Then my lovely MND nurse arrived to lead us to the clinic. This turned out to be quite a lot of people sitting in a semi circle and awaiting our arrival. This did leave me with slight feelings of being a goldfish in a bowl. Whoops. I had to laugh afterwards as that was pretty pathetic on my part. My app definitely saved the day though.
I had prepared the app in advance. Everything I could think of that was wrong with me was remembered in the ‘My Stuff’ bit of the app. I could just play the assembled throng one bit at a time and let them discuss it. It turns out that nearly all discussions ended with the thought that my symptoms aren’t bad enough to need action just yet. But it was just fantastic to be able to use my app to explain what I wanted to say.
My best moment was when the app on my ipad said ‘I can’t swallow quinine at night now as it doesn’t go all the way down. I have been told I could crush it and mix it with yogurt but that it will taste disgusting. If I don’t take quinine I get cramps again so I think I will have to do that unless there is an alternative.’ I told you I had my app prepared! The great thing is that it turned out there was an alternative. It was suggested I take it at the end of my evening meal instead when my swallow is better than last thing at night. Hurrah, that worked. I have once crushed the quinine tablet and mixed it with yogurt and the pharmasist was absolutely right. It tastes revolting.
To try and demonstrate the app a bit better we made two short films. Truth be told the quality is pretty iffy, as we used my phone to make them, but I hope it gives you an idea. No one is going to buy the app (or get it provided) unless they need it so I thought you may like to see it in action. You may remember I wrote about voice banking months ago, in this blog post.
You are about to see what it led to. And you will see why I laugh when I listen to ‘can’.
Long first video
I have no idea at all why I use one finger when I can touch type perfectly well. I really have tried to make myself use more than one finger but somehow I keep reverting to just one. It is a good thing I get predicted words or I would be even slower. So that was my banked voice. It isn’t great but I am very fond of it all the same. Luckily my husband agrees so at home that is what I use. Out and about though, I have a different voice to use. Let me show you a bit of the choice of voices I have.
I love the fact that the app lets me choose and I can hear a bit of each to decide which I want. I can even show you one in action.
Here it is
I would love to be able to have you just start the videos without clicking links but I haven’t been able to work that out yet! I will keep trying in case I want to do more videos in future.
It is fun trying to get faster with the app. I haven’t got much nippier yet but the fantastic thing is that it gets better at predicting the more I use it. So, use it I must. I love the fact that it won’t let me use rude words and puts stars in instead. Sorry, should I admit to having tried a couple?!
Tomorrow I am off somewhere quite smart so definitely no rude words, but will people hang on till I type out what I want to say into the app? Watch this space.
Next week I am going to try a three way chat with the app too. I am agog to see how that will work. There is so much fun to be had in learning new things. Do embrace new things when you get the chance. It is such fun!
Oh, one last thing. I do always put links that open in new windows so you know you can always get back to my blog. I do hope you have enjoyed seeing more about my app.
Love your Life
Have you always loved your life? Do you love it now?
This is a title I have wanted to use for ages. So much so that I looked at all my old posts to see if I had sneaked it in before. Phew. I hadn’t.
I haven’t always loved my life. Oh, the angst of some of my teenage years. I was tall, shy and very self conscious. That is a rubbish combination. It is very hard to become invisible as a teenager when you tower over most of your classmates. I gave it a go, just the same, but a hunched over look is never really a winner.
When I was about thirteen and at my most lacking in confidence phase my father said something to me that I never let him forget: “People say you look like your mother but that isn’t true. She has always been very pretty”. My parents adored each other but I always, well, some years later anyway, laughed with my father about what an unforgivable thing that was to say. My father was wonderful, as I described here, with a bit about his funeral too, but I was still at the wrong age to hear that. To make matters worse I was also startlingly stupid at that age.
At my school we were taught to play lacrosse. This is an evil game involving a hard ball flying around at head height and you each had a fairly innocent looking stick (crosse really, I did learn the terms) from which you could fling the ball. Early on in our tuition, and I can promise I remained appalling at the game, we were put in pairs and told to throw the ball at each other and try and catch it in our crosse. Crucially, we were also told not to move as it was a test of the accuracy of our throwing. My partner threw the ball to me. I could see if was coming straight at my head but we had been told not to move so I didn’t. And was knocked out. As I said, staggeringly stupid. I am pretty sure that at that age I did not love my life.
I have spent far more of my life loving it than not though. Life really has been very good to me. I have been scrolling through past posts of mine and realise I say that quite a lot. But that doesn’t make it any less true. Of course, I wouldn’t choose to have MND but most of my life has been wonderful. I have a gorgeous family and fabulous friends. I have read gloomy tales of people being diagnosed with MND and then finding friends drifting away. Despite my very dodgy speech my friends have been wonderful. I really am a lucky girl. (OK, I know, not really a girl!)
I want to mention my mother here. My father, as I described in the post I linked to above, was interested and interesting. This is my sort of golden rule of how I would love to be if I can. It isn’t always easy. My father died almost three years ago and my mother has been sad ever since. My father was 79 when he died and I know my mother feels he was taken from her far too soon. My mother says she feels lost without him. I would love so much to help my mother appreciate that she still has some lovely people and things in her life. We have tried but she just can’t see it. It makes me very sad to see her as she is and I hope like mad that something will change but you just can’t make someone else love their life. So, concentrate on loving your own life. You will be so much happier if you can.
Why do I love my life, despite bulbar onset MND? It is a pretty rubbish way for it to start if you look at this. I read that early on and it was very scary as I imagined a swift deterioration. Mine is progressive bulbar palsy as you have probably guessed. But look at me. Well, you can’t really look at me but here is a helpful photo of me standing on one leg just now. You may recognise the gloves if you have read earlier posts. I do love them.
Truth be told, I can’t stand on one leg for long, but I can still do it. Surely a cause of celebration. My aim, of course, is to enjoy the things I can do while I can still do them. Even dancing happily while I do the ironing is great when I may not be able to do it for long. What else do I love about my life? I can still eat (slowly) for now. I can still write and I can still walk. I know this won’t last but how fantastic that I can still do these things at the moment. Please do try and find the good in the life you have rather than dwell on the bad bits or anticipate a gloomy future.
Yes, I know that can be easier said than done. Bad stuff happens. I won’t pretend there aren’t some pretty grotty things about what I have, even at this stage, despite looking as if there is nothing wrong with me. Sometimes I drool, especially when I am tired. It really isn’t a gorgeous look and it will get worse over time. Sometimes I cough out of the blue and sound as if I am gasping for breath between the hacking cough sounds. Luckily, so far, that has really only happened at home. I suspect it is worse for the people who hear me than it is for me. So, my life isn’t all sweetness and light but there is so much more that is great about it than there are bad bits. Even now.
If you have read any of my previous blog posts you will already know that I can be sickeningly perky. I still find it very easy to laugh at articles suggesting the best way to lose weight or age gracefully. Neither of those applies to my life at all now.
I turned to my computer and looked up ‘Love your life’ and this is what I found. Do, please, take a look. I love that link. It is just fun. There is so much to love about life. We just have to find it.
My plan is to finish this with a joyful song and this really does fit in with that. ‘Here comes the sun’ from The Beatles. Isn’t life great when the sun shines? It is a gorgeous day here today so do admire this gratuitous pcture of my washing blowing in the breeze with the sun shining.
OK, I have to confess I am going to sneak in another song link after all. This is ‘Perfect Day’ by Lou Reed and is here because I just love it and it always cheers me up to hear it. That means that, for me, it is seriously life affirming. I love my life. Do you love yours?
Let’s talk about support.
I have been thinking about support a lot lately. As I have MND support means a lot to me and I have been searching it out. But everyone needs some support. Well, I think they do.
Right from the time you are born you need support. Of course you do. A tiny baby can’t cope alone. I can’t imagine a life lived without people to love and be loved by, and supported by, of course. I will get to the additonal support I have discovered since being diagnosed with MND in November but I want to digress a bit first.
The first thing I have discovered since being diagnosed is that I am my own worst enemy. I am absolutely hopeless at accepting help. Whoops. My husband, far more often than he should, comes into the kitchen to find me trying to successfully open something and says: ‘ Why didn’t you ask for help?’ I tend to mutter than I can do it. The thing is quite often I really should ask for help. When my hands get cold I tend to be ungainly and slow and help would be really useful. If my hands are warm and toasty then things are very different. I can do everything, but I can be a bit slow if I am cold. Take my visit to an MND Support group, which I will describe in greater detail later.
A lovely lady at the group twice offered to help me move a chair and once offered help with putting my cup and saucer back on the table. I refused each time. I would love to say I was gracious but I strongly suspect I wasn’t. Oh dear. I should have accepted the help. I can do chair moving and cup replacing but how must the lady have felt as I kept turning her kind offers of help down. I do need to work on accepting help and support when it is offered. I have work to do.
I may have surpised myself with my reluctance to accept help but I am also surprised by how unbothered I am by some of the things I do. Fingerless gloves when I eat a meal out? No problem. Writing stuff on a pad instead of talking when we are out for a meal? Who cares? I do have a bit of sympathy for others as far as the pad goes. My pad, as I have shown before, is very blatant.
I am aware that not every passing stranger wants to read that. I will try and flash it at more people during MND awareness week in June but for now I turn it upside down when it is not in use. I don’t want to dismay anyone with the message by catching them unawares.
I think it may be time to return to talking about support. My best support comes from family and friends. I should really keep telling them all, well, writing, how grateful I am. I mentioned before about the friend who came to visit bearing a bunch of flowers and a pork pie. Just wonderful. My husband makes sure I have mid morning and mid afternoon snacks as well as my other three meals and quizzes me on their content. I need to eat so often to keep my weight up and that, and my gloves, which he is also keen I should wear, are the things he really chases up. I know it is really just because he loves me and wants to support me. One brother insisted I needed a vast box of chocolates not long ago and my other brother brought me wonderful high calorie snacks when he came to stay. It all makes me feel wonderfully supported. Everyone knows that MND patients do best if they can maintain their weight and everyone is out to help me achieve that for as long as possible.
My daughter had a fantastic history teacher when she was at school, who saw through her look of interest and realised she was quite capable of looking gripped despite not concentrating on the topic at all. He had faith in her ability and gave her the support she needed to get an A in the A level. I love it when support achieves something like that.
What does support mean to you? I think for me a lot of it is knowing that someone else believes in you. But the additional support I have found since my MND diagnosis doesn’t really match that. Nor is the support provided to my daughter in this picture showing her joyfully enjoying pizza provided by someone else when she was stuck on crutches. Yet that is still support.
Now I had better tell you about the MND support I have found so far and that differs from the support provided by friends and family. For now I look ridiculously healthy but my speech is getting increasingly slurred and hard to understand. I even feel great. So the support I have found is just right for me and is a very personal point of view. But I bet a lot of it supports others with MND too.
As I lived in England when I was diagnosed the first thing I found was the MNDA website
I found an amazing mass of stuff to read there. I know there are people who don’t want to know lots about MND when they hear they have it but I avidly read masses of stuff. Then I found their forum which is just great whenever I have a question. There are so many people with MND as well as carers of people with MND that there always seems to be someone to answer a question. I have even found a couple of people I cant to a lot as we support each other. I love it.
The next source of support I found was Twitter. Yes, really. There are a lot of people with MND who have Twitter accounts. Well, of course there are. If you can’t talk well, or move as much as you wish, then social media is just fantastic. And mututally supportive.
While I am on the subject of social media (a very radio 2 term I think) I was also told about a new closed Facebook group recently, called MND together. It was set up to provide more mutual support for people with MND and their families who may wish to join. Truth be told, all I have done so far is introduce myself but it is another fantastic place for getting answers to questions. Yet another source of support. The group was started by a wonderfully inspiring lady called Liz Ogg whose blog can be found here.
Now, I did promise I would mention the support group I went to. MND Scotland run support groups in various parts of Scotland and the closest to me is in Inverness. I dragged my sister-in-law along with me last week and off we went. I was very excited to discover there was food as I get hungry far too easily. Hurrah for sandwiches. There was a talk on research in Scotland but the most fun was meeting people. Not just people with MND but people working to support MND too. My sister-in-law was really impressed. Hurrah to that too. It is slightly harder for me because my speech is so poor but I would go back. I can always write things down and I do need to get better and better at that. I even have my app when I need it so very defeatist not to try. They really were lovely people. And yummy sandwiches too.
I have to mention MND Scotland. They have been wonderful. They sent my pads to me by return of post and they have put my blog on their website. I won’t link to that as you are reading it anyway but I was rather enchanted. Plus everyone I have spoken to their has been lovely and helpful and I have been offered ten free sessions of complementary therapy by them. So much lovely support.
So, let’s celebrate support really. It is so wonderful to feel supported, whatever your situation.
Not long ago I went to an MND support group and was asked if I enjoy cooking. Well, yes I do. The lady who asked beamed at me when I said that. I don’t know why, and never thought to ask. Perhaps cooking helps maintain dexterity a little longer or perhaps she just likes cooking too. I really don’t know.
I had an amazingly privileged childhood with huge amounts of home cooked food. I know I alluded to this before here. A treat for us was to have something bought. I loved it when we were allowed to choose a cake from the bakery in Beauly. My absolute favourite had a hard coconut flavoured outer shell with a chocolate base. Through the mists of time I have no idea what it was called but I loved it.
My mother’s cooking was wonderful. We had all sorts of yummy concoctions. Sadly the most memorable were the experiments. When my mother set her heart on cooking something she was a like a dog with a bone. Trying and trying again until she perfected it. Actually, I may be unfair with the dog with bone analogy as she was more like Robert the Bruce if this story is to be believed.
There was the ginger beer brewing in a bucket which shot up to the ceiling when the lid was taken off. Very exciting. That was tried several times before perfection was achieved. A more convential form of cooking was when a pork pie was the object of desire. We had a run of pork pies as my mother set her heart on achieving a pork pie she was happy with. Once she achieved that she never, as far as I know, cooked another. Hmm, I wonder if that explains my MND inspired love of pork pies and the desire that any I eat be classy and delicious? I definitely don’t try cooking my own though.
What about my own cooking I hear you ask. You did, didn’t you? My earliest cooking memories all involve my brother, Alasdair. He is only 11 months younger than me so we did a lot together. The Victoria sponge we made makes a good example. We had to beat everything together with a wooden spoon and found that startlingly boring after a bit. As a goodie two shoes I kept bleating that we must get all the lumps out and keep going. Alasdair was having none of it. So the mix went in the tins complete with multiple small lumps. We also opened the door to look at the cake a few times while it was cooking. Incredibly, it was the lightest sponge I have ever eaten. I have never been prepared to reproduce the lumps when cooking a sponge or keep opening the door to look but it really was a triumph. Well Done Alasdair.
Have you noticed that my stories so far involve cooking not quite going to plan? I think I need to continue in that vein a little longer and tell you about my chocolate terrine mishap.
Long ago, even before I was married, I often made a three choclate terrine for friends. It was delicious. A layer of chocolate sponge on top with white chocolate mouse forming the middle layer and dark chocolate mousse at the bottom. It even looked quite impressive.
One day I was happily cooking for friends coming for a meal the following day and, inevitably, the chocolate terrine was due to feature. I had made the chocolate sponge and it was already lining the base of the loaf tin as I made the white chocolate mousse. Then the phone rang. As I chatted I happily poured the mousse mix on top of the sponge and put it in the fridge to set. Perfect. I carried on chatting then went out for a bit. Three hours later I returned to the kitchen to make the dark chocolate mousse. Catastrophe. I found my sponge floating on top of white liquid. Whoops. Chatting on the phone, I had totally forgotten to whip the cream and fold it in. I needed to rescue my tragic looking pud. It turned out that putting the sponge in a seive and patting it a bit to get the liquid out, then replacing it in the tin and carrying on the recipe as I should have done to start with was totally unapparent in the final pudding. What a result. Although more than 25 years later I can still remember how the sponge looked floating on the white liquid and how horrified I was. Yuck.
So, how has my MND impacted on my cooking so far? Not much at all to date, so I have plenty more scope for cooking catastrophes. I have a few photos to show you to prove I can do several things still. I have to admit they don’t look gorgeous.
On Monday morning I started cooking a chilli to bubble away in the slow cooker throughout the day. Look, I can peel and slice onions
I can also stir everything together in the pan. This bit doesn’t look great. Sorry.
It turns out what I can’t do easily now is open ring pull cans of tomatoes or kidney beans properly. I used to love them as they were so quick and easy to get into. Not now. I can do it but my thumb is a bit too weak for the role it is meant to play. I had to peel back the lids without using my thumb to add stability. This worked for the kidney beans which just sat politely in the tins. Chopped tomatoes were less successful as some of the juice gleefully shot out of the tin and splashed my top. You live and learn. But everything did end up in the slow cooker. Hurrah.
Luckily the end result, which I forgot to take a photo of, was delicious. Meanwhile my husband is thinking happy electric can opener thoughts as well as no more ring pull excitement.
For now I can happily keep cooking so I very definitely plan to enjoy doing it. After all, my husband is gleefully planning ready meals for when I can no longer cook. I think I need to keep cooking for as long as I can.