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.
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.
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.
Talk to me
Really, do talk to me. I know that sounds weird but let me tell you how I am getting on with my MND.
I have bulbar onset motor neurone disease and the means my speech is getting increasingly iffy. My tongue moves a lot less than it used to and I eat slowly. The good news is that at the moment my swallowing is almost normal so I can eat anything I fancy, and do. I have a particular fondness for pork pies just now.
Are you now looking aghast? I was told to keep my weight up and so far haven’t lost any at all, but I get very peckish, and high calorie foods are wonderful due to my slow eating speed. In the circumstances I am not sure unhealthy food matters a jot. I do now make myself some rather delicious smoothies to compensate a bit. Today’s is, um, very green. Spinach, banana and mango in case you wondered how it achieved such a vibrant colour. I promise you it is gorgeous despite the lurid shade.
I even look as if there is nothing wrong with me. I walk around happily and you just wouldn’t know to look. So, I look OK. I eat everything I want to, albeit slowly. But oh, my speech.
This is where the talking bit comes in. Gone are the days when I could talk without giving it a second thought. I do make sense when I talk, just. Well, most of the time I do. Talking to me over breakfast is very unwise, and late at night likewise. Although I can talk my speech is definitely deteriorating quite quickly at the moment. And I speak slowly and can’t say much at a time.
What I absolutely love are the people who talk to me normally. These are the people who chat happily away, telling me all sorts of stuff, and know my contributions will be short. I say things like ‘How fantastic’ or ‘Oh no’. I can say more but I love to hear people talk about what is going on in their lives. My pet hate at the moment is being asked ‘How are you today?’ in a slightly mournful tone of voice. I don’t feel remotely mournful, and I am probably exactly the same as I was yesterday. Talk about your life instead. Or books, or music, or the news. Anything is lovely. Just don’t talk about how I am please.
Think about Stephen Hawking for a moment. He is probably the most famous MND patient in the world. He is also atypical. Life expectancy is generally not great with MND and yet he has had it for almost 50 years. But that isn’t what I want to talk about. Stephen Hawking is a brilliant, brilliant man and one of the greatest theoretical physicists in the world. Do you think he wants to talk about how he is? I can’t be sure, but I would be surprised if he did. I don’t either.
I am told I started to talk early. I have a feeling a lot of first born children do. There are a multitude of stories about me talking. I am pretty sure one involves a priest who came to stay when I was about two. I asked to go for a walk with him and, being a sweet natured priest, he agreed. I am told he looked quite weak when we arrived back as I had managed to talk non stop throughout our walk. I am also told I spoke for my brother, who is 11 months younger than me, a lot when we were small.
Years later I was offered a job despite, when asked to describe myself in three short sentences, confessing that short sentences weren’t really my forte. Now, of course, short sentences are very much my forte. But oh, how I liked to talk.
Actually, I still love to talk. I can’t at length any longer and only join in when I can. I am already armed with an app, on my phone and an ipad, for when I can’t talk at all anymore. The best thing of all is that it will speak with my voice. Not the voice I used to have, but mine from January, carefully banked. I am so thrilled. I may be slow with it at the moment but how fantastic that when I need it I will still be able to say what I want. Perfect.
I also have an MND Association notepad. I do feel the wording is slightly daunting but it is still perfect for when I want to impart some information and am not sure I can say it clearly enough. At some point I will try and get a notepad made up with words I have chosen but for now this is great.
Finally I also have a notebook in my handbag. You can see how well prepared I am, I think. I feel primed and ready. I just need to keep the use of my fingers for a bit. I tried out the notebook for the first time when I had coffee with a friend last week. I was also eating a delicious bacon sandwich. I can’t talk very well when I am eating so the notebook was extremely handy. Sadly my writing isn’t great, especially when I am rushing to scribble a thought down. Luckily Elaine coped.
In case you are wondering about the second bit I wrote, Elaine had just congratulated me on finishing my bacon sandwich.
I am moving home to Scotland next week so there will be no blog post for a week but I want to share a link to the MND Scotland ‘Let me Speak’ campaign, launched last Summer. Do read it. The last sentence in particular made a big impression on me.
Let me Speak
The really fantastic news is that the Scottish Government announced earlier this year that communications equipment with be a statutory right for people with MND in Scotland. My stuff is pretty low tech at the moment because I can use my hands but there is eyegaze technology for those who can’t speak or use their hands. I was told I will always be able to communicate and that is music to my ears. I am sure it is true too.
I may not be able to talk for myself for much longer but that doesn’t mean I intend to be defined by my condition. I am still me. My brain is still whizzing along at my normal speed. I just sound different. I have been really lucky so far and only one person has ever spoken to me as if I have a mental handicap despite my slurred speech. So the moral of this tale is to please never assume someone with a speech impairment has to be spoken to slowly. And please, please, do talk to me about anything.
MND Question and Answer
I am really excited about this blog as it is not just me writing it. I have a co-author. I haven’t had one of those before so you can see why I am almost twitching with excitement. It is another MND blog but then motor neurone disease is a big part of my life at the moment so you probably won’t be surprised by that bit.
I have to admit that although I have MND it is early days for me. I was only diagnosed in November and because I have bulbar onset MND the early signs are just my speech really. That means very few professionals have been involved in my care so far. That makes sense because I don’t actually require any looking after just now. I have seen a dietician (“Eat whatever you like”) and a Speech and Language therapist, but no physiotherapist, occupational therapist, or anything else just yet. They will be needed in time though. For now I am still trotting around happily looking as if there is nothing wrong with me. You would know there was something wrong if you heard me speak but I don’t think that even then you would necessarily guess at MND. Partly that is because it just isn’t all that common. There are a lot of GPs who have never seen anyone with it.
So, who is my co-author? You may have read about Kate before. She was the one swinging her arms and legs about here and also the one I was forlornly searching for cake with in my blog last week. She is also the perfect person for me to try a question and answer blog post with. You will see why in a moment.
Before that you might like to read the MND Association information sheet on physiotherapists. It is a wonderful charity if you have MND and I am really impressed with their information sheets. Let’s face it, I obsessively read a lot about MND.
MND physiotherapist information
Were you wondering if I would ever get to the question and answer bit? Are you sitting comfortably? Then let us begin. My questions are in bold.
Can you explain how you came to be involved with my blog?
Oddly I first met Susan online, becoming friends when we were both supporting each other through a weight loss programme. We eventually decided to meet up for coffee, a walk and a chat, so I was already following her Blog before she was diagnosed with MND.
I also happen to be a Physiotherapist with more than 25 years experience, much of it working with people with disability and deteriorating conditions such as MND.
That sounds as if you have a lot of expertise but is much with MND? We are always told it is a very unusual thing to have.
Not really an expert in MND specifically, more a practical problem solver for individuals living with neurological problems. I have a broad range of experience working with other members of the professional team (as part of the NHS and privately) but much of my involvement is community based. By visiting people in their homes I see how different individuals and their families deal with the challenges that living with disability brings.
I linked to Keith’s Vlog last week. How did you find that compared to your experience of MND? (I am wondering if it actually reflects more than just MND patients too?)
I have watched several of Keith’s excellent Vlog’s. His experiences mirror that of many people that I have been involved with, not only with MND but other neurological conditions as well. The things that are more specific to MND are the speech, swallowing and respiratory involvement.. On these area’s a generalist like myself would always liaise with those with expertise in this area
Keith’s Introductory Vlog (you can find his others from here)
What in particular struck a chord from the Vlog?
Those people that have control over their care budget and therefore the type and timing of the care that they receive do seem to fare better.
One patient, severely disabled but not by MND, once told me, “ My quality of life is as good or bad as my carers.” A pretty powerful comment don’t you think? This lady had speech difficulties and lack of controlled movement in all limbs but ran her home, worked and she and her husband had 2 children. She has a wicked sense of humour and used to delight in being asked “How did she get to have her children”?
I digress but if you (or your nearest and dearest) are able to organise care yourselves it gives not only the practical control over how you live your lives but just as importantly the emotional sense of control.
Have you found anything, perhaps a way of living, or a personality trait, that seems to help people deal with neurological conditions?
I think a positive attitude always helps in life but this coupled with an ability to set realistic plans or goals does appear to help you to live your life.
Becoming knowledgeable about the condition and it’s potential impact on your life is a good idea. Not necessarily poring over the latest research ( unless that is really your thing) but looking at what equipment is out there to help now and planning at what stage you think you will need what help. So I guess I’m saying planning skills are helpful because in MND things can change rapidly it helps to be thinking one step ahead.
Keeping active, again, is good for everyone, so exploring options around this is helpful too, what you do really depends on individual circumstances but ideally something that you enjoy.
I absolutely agree that a sense of humour and friends to share it with is a massive help.
Have you found things for MND patients that are practical but not necessarily often suggested?
Technology is progressing at a vast pace, there is a lot of stuff out there. Some will be helpful, some will look ideal and turn out to be just not quite right. A lot of it is expensive and so needs careful consideration and help from experienced people (this could be professionals such as OTs, Physiotherapists, Speech and language therapists, etc or someone who has personal experience of using adaptive equipment themselves.
Be aware though, Keith mentioned cold feet. Many of my non MND patients have tried a Circulation Booster to help this but it works by electrical stimulation of the muscles (FES) and this is usually not possible in MND ( as it is the nerve that is deteriorating).
For those that are able to attend a Naidex exhibition ( April 2016 at NEC in Birmingham) this is a showcase for equipment open to the public and professionals and can be a fantastic way to see what is out there and even to try some of it. I go most years and have sometimes managed to attend with patients of mine.
Would you like to finish with some tips for dealing with MND in an ideal world?
Become the expert on your condition.
Move if you can, it has a multitude of benefits.
Stay positive and seek the support of the right professional team for you.
Emotional support is as important as physical
Try to retain control of your own finances, lifestyles, goals.
Don’t let people treat you as a condition. You have a condition but your problems / solutions may be individual to you and your lifestyle.
Learn to tell people what you need them to do to help (Keith demonstrates this very well in a direct but pleasant manner)
Embrace appropriate technology as an aid to life, not a sign of disability.
Retain or develop the ability to laugh at the darkest bits, it really does help.
Thank you so much Kate. I loved doing a question and answer blog, and you have really given me food for thought. I can’t believe I have a physio friend with exactly the right background. If only you lived nearby.
To prove to everyone that I really am trying to move, and because I feel every blog post should have a photo if I can find one, here am I about to do my daily exercise bike session.
My week with MND
I didn’t plan to write about MND this week. No, really I didn’t. You may think that the fact I have this disease would totally dominate my life but it doesn’t. My original plan was to write about something totally different.
I was going to write about hand holding. I had a theory that it is seen a lot less than when I was younger. My theory, based on observations in Bristol and Edinburgh, was that only middle aged and old couple hold hands nowadays. Then we went to Bath on Saturday and it seemed to be stuffed full of couples of all ages holding hands. My theory was blown out of the water. So I am going to tell you a bit more about my life with MND so far after all.
It seems quite appropriate since yesterday was two months since I was diagnosed. Fortunately no one looking at me would guess yet. But there are a few things happening to my body that are just starting to creep into my consciousness. And there are more things still I am learning about. So, let me tell you a bit about my week with MND.
I am sure you know that MND is motor neurone disease. This is known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s Disease in the U.S. This is also, of course, what the ice bucket challenge a couple of years ago was raising money for. MND in the UK and ALS in the States. I hope it did raise awareness. I know a lot of people had fun doing the challenge but didn’t donate any money (about 90% did that apparently) but it really did draw attention to MND.
A week ago my husband and I were in Edinburgh for a couple of nights, staying somewhere we love. After all, faced with MND, why not seize the chance to do things while I still can. Hence my hand holding observations as we trotted round hand in hand ourselves in our middle aged way.
My speech does get worse as the day goes on. I may make sense all the time, as long as I speak pretty slowly, but I am very conscious that I do sound quite odd now. The fact is though, I can still talk and, as the speech therapist told me, I will always be able to communicate. Just not always by speaking myself.
I mentioned voice banking using modeltalker in my last blog but I want to introduce you to Lee Millard’s blog again as he has a really good post explaining what voice banking will achieve.
I am really nearly finished the required 1600 sentences now. I have less than 100 to go and should finish tomorrow. But how I wish I had known about it and started when I was first diagnosed with MND and my voice was slightly better. The fact is, I just didn’t know about it then. Wouldn’t it be fantastic if everyone with MND could record their voice in this way. We just need more awareness of voice banking at an early enough stage of MND.
When we returned from Edinburgh I was back to plugging through voice banking. Some of the required sentences still bemuse me but I wanted to show you what I can see when I do it. The great thing about Modeltalker is that it is free to use. I can’t record more than about 100 sentences a day with sufficient clarity to satisfy myself but that still means it can all be done in a couple of weeks.
So here was my screen as I started today in my silent room and with the microphone headset ready to go.
As I was about to record my first sentence of the day the peak amptitude and speech rate were at zero. I don’t think this is a sentence I ever anticipate using, but you never know. I might suddenly find a man surrounded by other men and feel this is exactly the sentence I need. The point really, of course, is to get lots of speech sounds to produce a synthetic voice that can say (hopefully) anything. Once I have recorded the sentence I can see how I have done at the same time as seeing, and hearing, the next sentence.
So, peak amptitude was pretty good and pronunciation was fine but my speech was slow. My speaking speed is always pretty slow now but it is good enough for this. Hurrah. I will manage it. I may not sound the way I used to but how fantastic to have my own voice to use when I need it. If only all MND patients were as lucky. Think how fortunate I am to have MND now. There may not be a cure but technology has come a long way in a relatively short space of time.
We travelled to and from Edinburgh by train so I am going to introduce another part of my week. I read a lot on the train as it was an 8 hour journey each way. On the way up I read this:
It is a wonderfully positive book. He has the slower version of MND, was diagnosed in 2002 and is still alive and still writing a blog.
Michael Wenham’s blog
I don’t have the slower version of MND but the book is fantastic and full of positivity. I want my husband to read it too. But on the way home I read a different book. This one:
I am definitely not going to get my husband to read that one. You have to feel brave once it gets to the MND bits in this one. And it does get to MND. It is a love story but this is a lot harder to read despite the love shining through. There are also heart breaking moments largely concerning inability to communicate. I am so pleased I have been told I will always be able to communicate. Things have come on a lot since 2002. However I have now given up on MND books for the time being. More frivolity is definitely called for. Time to look at what my body is slightly struggling with I think.
I have got very good at taking the top pull thing off the milk with my teeth. Shhh, don’t tell my husband. I have no idea why that particular thing should be so difficult, but it is. I can still unscrew the lid luckily. I also discovered this week that I can use the garlic press for 8 cloves of garlic but not ten. What a good thing very few recipes require such prodigious garlic pressing. My weakened thumb is slowly drawing more attention to itself but only in tiny ways so far. It does mean I am seizing opportunities all over the place while I can still do so much. I have come to the conclusion that it is no longer worth the effort to eat food I don’t enjoy. I know this may seem bad manners but as eating gets a bit harder work I think I will have to try and stick to food I enjoy. Whoops, there goes my husband’s chance of macaroni cheese for a bit. He loves it. I don’t.
Time to slip in one more detail about my week with MND. On Thursday I saw the Speech and Language Therapist for my second appointment. You may remember that the first one was a look into the future and the multitude of communication aids out there. Thursday was very different as this was assessment day. Can I just say that it is very weird having a stethoscope held against your throat while you drink water. Luckily that wasn’t required for the custard or dry biscuit. No one quite seems to believe I don’t choke on food yet and nor do I have to drink copious amounts of water with food. I can only assume choking will be something MND will bring my way before too long. That is an excellent reason to enjoy as many happy eating experiences as I can now. Meal out anyone?
Finally, a question. MND will take my voice, so I have been told how useful it is to be able to flash a card or pad at people saying something like: ‘I understand everything but I can’t speak’. I have visions of that inspiring a look for terror and loud, slow speaking so I will need something less daunting to get the message across. Any suggestions? I want to be prepared.
A whole new world
I want to tell you a little bit about the new world I find myself in. There is so much that I had never come across before. But is it really like a whole new world?
Disney’s A whole new world
I just listened to the Disney song again and the line that really made me smile was ‘every turn a surprise’. Perhaps not every turn but I certainly have a sense of wonder at the moment. Maybe the song really is appropriate.
Let me start with the dietician I was sent to meet last month. Sally is a specialist dietician for MND and is absolutely lovely. Despite this I still got a lot of portents of things to come. I can eat anything at the moment. I am just a bit slow. Bulbar onset motor neurone disease means my tongue doesn’t move as swiftly or as far as I might like. Nonetheless, this is a rather lovely world where I am told I have to maintain my weight. I was weighed to try and make sure I don’t lose any. Drat, I would have quite liked to be half a stone lighter. But who I am to argue with a dietician?
I asked about snacks. As my portions are a bit smaller I have been snacking more to compensate. Is chocolate biscuit cake an acceptable snack? Absolutely. Apparently I mustn’t eat low fat versions of foods although I am allowed semi skimmer milk as I don’t like the taste of full fat milk after doing without it for so many years. That was a relief. There are lots of January magazines with healthy start to the New Year emblazoned across their covers. This is no longer a world I am part of. Things were so different a year ago when I would have happily anticipated lots of healthy meals. Fear not, I do still eat healthy stuff as well as chocolate but low fat recipes are no longer for me. It is quite a strange world to get used to. But fun too.
Last week I was sent to see a Speech and Language therapist. I headed off to a different hospital to see her. This one looks like something the ‘Call the midwife’ nurses would feel at home in.
Now this appointment wasn’t quite what I had anticipated. I really liked the speech therapist but I had hoped for a few speech tips. Instead I was carried forward into my potential future world. I was told I will always be able to communicate. Yippee. How depends on which muscles I lose use of. Some things I knew about already. I had discovered there were text to speech apps out there. I had even played with two on my phone. The first one was hysterical but it is a really good job I can still talk for now. For that one I had to be male and the default speed was so fast it turned into gobbledegook. It made us roll around laughing but was definitely less than ideal. The next one I played with let me be female which was promising. I was laughing too much to speak so used it to tell me daughter ‘That was really cruel’ but it sounded like ‘That was really cool’ and she beamed happily at me. The king of the text to speech apps seems to be Predictable. Do have a look for it and feel your jaw drop at the cost. The speech therapist let me play with that one to see what I thought. It really is quite fun.
I was also shown boards for me to signal to letters with eyes if I lose the use of my hands too. Then I was told about computers that pick up eye motion to work out what you want to type or say. Some of things I was shown made me open my eyes wide in amazement but others made me sigh. None was less than fascinating. It really is a whole new world that I was largely unaware of.
I want to introduce you to Sarah Ezekiel whose art work is produced entirely with her eyes. Just look at the sort of work she does. I am overcome with admiration for her.
The first thing I read about Sarah Ezekiel
Sarah shows just how much can be achieved despite MND yet I suspect I would never have known about her without my own diagnosis and that would have been my loss.
Meanwhile back in my own little world I have been introduced to ‘modeltalker’. If I can record all the phrases (1600 of them) then they can make my own voice into one that can be used with the Predictable app I mentioned earlier. A sample of the sort of thing I have to say would be ‘He now evinced displeasure’. I wrote that down when it came up as it made me so happy. Something I say all the time, obviously. OK, that was frivolous. I know it is really to get as many sound combinations as possible. The best thing is that I can just work through the sentences bit by bit. Last week I nervously recorded ten test sentences to see if my speech would be good enough. Two days later I heard that it would. How fantastic. I may yet get to use my own voice talking through an app when my own goes. Come to think of it, I wonder if people I know would find that reassuring or odd.
I don’t need any aids yet but this is definitely a world I am becoming increasingly au fait with. I have discovered what a rollator is. I think I may have been able to guess at that one. A sort of zimmer frame with wheels really. I have even seen one in use. Other potential future aids have proved a total mystery to me. When someone mentioned an Etac patient turner I imagined it might be something that helped a patient roll over in bed. Luckily I was given a link. I was totally wrong. Do look to see what it really is.
Etac patient turner
And then there was the wheelchair. Do have a look at this link too. I had no idea such a thing even existed. I won’t tell you what it is but how incredible that such a thing exists. And how fantastic.
A different wheelchair
My world is undoubtedly going to change but for now I look in awe at the sort of aids that are out there. I am not going to write about MND every week but there is just so much that is new to me that I couldn’t resist this time.
You never know what may be round the corner and this is certainly not a new world I expected, but what fantastic opportunities are still out there. I am determined to try and enjoy everything I do. Do try and do the same. Think of the song at the start. There is so much for all of us to see.
Tips for a move
I have been quiet lately thanks to being wrapped up in a house move. In fact, as I helped my mother move in July and then moved myself in October I feel I have acquired a certain amount of expertise this year. Certainly a lot more experience of moving than I usually acquire in a year.
In fact, it isn’t particularly unusual for my family to move house. It was very unusual indeed for my mother to do it. How on earth do you know what to take and what you will never need if you have lived in the same house for well over 45 years? It was a lot easier for us.
So, these are the main moving tips I have absorbed this year.
Firstly, be friendly to the removal men. Tea, coffee and biscuits are almost always welcome. They will also know far more than you and packing things up and be a lot quicker at doing it. Let them get on with it, keep the hot drinks flowing, and appreciate how well they work.
Secondly, don’t scare the removal men. I don’t think I ever have but it is certainly possible. I have seen a look of concern in a removal man’s eyes and it wasn’t pretty. The secret to keeping them content, apart from copious hot drinks and biscuits, is to avoid regularly changing your mind or twitchily checking they are packing everything. That way lies additional stress for you and worry for the removal men. I am aware that I keep saying they are men but that is only because I haven’t come across any removal women to date. I am sure there are some.
Thirdly, try to work out what you don’t want before you move and get rid of it. This is a lot easier said than done. You nearly always find yourself unpacking some stuff and wondering why on earth you brought it. Truth be told it is likely that more than one unwanted item will sneakily move with you. This time we consciously brought something with us that we knew we didn’t want. Do try not to do that. You may wonder what we brought that we knew we didn’t want and be hoping it was something small. It wasn’t.
We brought a child’s pool table that can also become a table tennis or air hockey table with us. I don’t think anyone has played with it for at least five years. Surely we should have sold it or given it away rather than bringing it with us. We did mean to. The thing is, we found every accessory for it apart from around half the pool balls. So we moved hoping the balls would materialise during the move. They didn’t. The moral of this tale is don’t be like us. Don’t move with something you know you don’t want.
Fourthly, don’t cry. Oh, this sounds so simple. Moving is exciting after all. Stressful too though. Try and focus on the good bits about the move. It is fair to say that, despite multiple moves, this is not something I am brilliant at myself. I don’t think I have ever wept over a move before this so I do feel a bit pathetic confessing to it.
We don’t really get to choose our house when we move as it comes with the job, so there my mother did have an advantage over us. Her house is really lovely. Sometimes we get a lovely house too but this time there is an issue. Sadly the living room is on the second floor. You may be wondering why this is sad. Were it light and spacious it could be providing us with wonderful views and plenty of room. It isn’t and it doesn’t. Instead our much loved and freshly re-sprung sofa failed to make it up the stairs. It is currently residing under covers in the garage. I do hope it copes. That is what made me cry.
I don’t think it would normally have been more than an irritation but a move is stressful and suddenly I could feel my bottom lip quivering as I heard that the sofa would have to live in the garage. I didn’t want the removal men to see me sob so I swiftly retreated to a bathroom until I could compose myself again. Poor sofa. By the time the top half of a display cabinet had also failed to make it up the stairs there were no tears left. Or perhaps I had simply realised that there are more important things in life than whether or not all your furniture fits in the house. At least we had the essential bits. Beds for a start.
Tears really are best avoided. It is never ideal to lock yourself in a bathroom during a move in order to weep copiously. And it is almost certainly better not to embarrass the removal men by crying in front of them. It may not be possible, but do try not to cry during a move.
My next tip is to remember you will have to work hard. There will be times during the move when you can’t do anything and simply be in the way if you try to. This is mostly while the old house is being packed up. You swiftly realise you will be underfoot while everything is being wrapped, packed and moved into the lorry. You will have a lot to do at the new house finding homes for everything. Embrace it. I always start with great intentions to be much tidier each time I move. It doesn’t really work but I love the promise that it might. Certainly try and get rid of packing boxes quickly. We had boxes flattened and waiting in the garage for the removal firm to come and pick them up which they managed within a week. They even took the packing paper, hence the non-flattened box. Perfect.
Finally, find the positives. Moving house is stressful. You won’t find the ideal home for everything quickly so don’t rush. Just take your time and enjoy being somewhere new. My husband hasn’t quite managed that yet and keeps muttering darkly about the size of the house. But we have everything we need. It is a new area to explore and anyway it is only for two years. We need to enjoy it.
Removal men are usually great, even if things have vanished during a couple of our moves and sometimes a couple of things have been broken in the move. There are always far more positives than negatives though.
I hope you don’t have to move soon. But if you do, do try to enjoy being somewhere new.
Where are the positives?
Next week I am moving a couple of hundred miles West. The removal men turn up tomorrow morning. At the same time I am in the midst of having a variety of medical tests, the last of which will be at the end of this month. You may think the timing isn’t great. Perhaps it isn’t. But I have a feeling just doing one without the other would be a lot more stressful. It is definitely time to go and find some positives in the situation.
What would you do faced with both things going on at once? How would you react? I have gradually realised as I get older that my natural inclination is to find positives. Sometimes I do think about what the tests might reveal but it isn’t something to dwell on. No one actually knows yet.
My house currently has bare light bulbs, pictures propped against walls rather than hanging up, and boxes all over the place. The chaos will be short lived though.
What other positives are there? I feel really well. I know of someone who is almost perpetually stressed and that always seems sad. On the other hand I am slightly stressed at the moment which has, gloriously, enabled me to eat to my hearts content and not gain any weight at all. That definitely proves that every cloud has a silver lining. I do love finding positives, even if I am a touch worried that I am resorting to cliches.
The most exciting thing about the move is that it is the start of a whole new adventure. We are going to be able to explore a new area. It will be the first time I have lived in a city for many many years. It really does feel as if there are lots of new experiences just around the corner. I hope there are.
Sometimes I wonder if I am a bit too optimistic. Is it really reasonable to happily look for positives in all sorts of situations? There are times, of course, when I worry. Especially about the people I love. There are even times when I worry about myself. I know I risk sounding ridiculously cheerful, but no matter how bad things seem there is almost always something good to find too. Don’t stop looking for it.
I was ludicrously shy as a child. It would have been very easy to retreat into myself. So how did I end up the way I am? Certainly my parents wouldn’t have even considered that I might be allowed to hide away. Although I certainly did when I could get away with it. I knew I wasn’t an interesting child. Perhaps that is why I so much want to be interesting and interested when I am older. I have so many relations who have managed it that I really hope I can too. I love the nature versus nurture debate. But I am not sure that positivity has much to do with nurture. Good examples definitely don’t hurt though.
Is the most inspirational poem ever really ‘If’ by Rudyard Kipling? Many seem to think so but I am not sure. I will never be a man. And I am far too much of a wimp to risk everything on a roll of a dice. Yet I still love the poem. There is so much in it that I really would wish to live by. I wanted to find a reading to share with you. I don’t recognise every film clip in this version but I love the voice of the reader. See what you think.
If by Rudyard Kipling
There is another film clip I would like you to see. It probably is an ideal way to finish when I am talking about finding positives. This is ‘The Roses of Success’ from ‘Chitty Chitty Bang Bang’. We all have things that go wrong sometimes. We all make mistakes. But how fantastic that we can learn from our mistakes.
The Roses of Success