My fantastic life
I have been quiet for a fortnight, well a bit more really. This is thanks to the fact we moved 530 miles north east of where we were in Bristol less than a fortnight ago. Back to our own house, which is fantastic. I am quietly proud that I drove a car the whole way up myself, armed with my new card, courtesy of my husband.
This is surprisingly useful. I used it each time I stopped for something to eat. That would be every couple of hours as I am on a mission to maintain my weight and that seems to involve a lot of food. I wasn’t sure what the card would achieve but each time I whipped out and wafted it at someone the person who read it looked intently at me and concentrated on deciphering my slurred speech. It was perfect as each time they managed to work out what I was after. That means peppermint tea came my way each time I fancied it along with all sorts of yummy foodstuffs. That really was fantastic.
I am a low tech sort of girl at the moment so I have my card and a new pad to write on. I don’t need it too often but it is very useful during the evening meal when my speech tends to be dire. Take Sunday. I could discuss, well write in my case, how ‘The Night Manager’ might end. I was wrong, but we enjoyed trying to anticipate what might happen. My husband and I had been out during the day and my husband had left some amazingly thoroughly explained cooking instructions for our son. Our son was less than impressed and argued that all that was really required was a note saying ‘When the timer goes off, finish step two’. He wanted to point out that he is perfectly intelligent, doing A levels in the Summer, and really can follow a recipe. I just laughed but agreed, on my pad, that I had argued for less involved instructions.
I really love the new pad. It is bigger than the one I illustrated in my last blog but suggests a conversation is possible, which is rather lovely. It does baldly state why my speech is iffy but that is a lot better than me saying it.
I haven’t tried it out and about yet so have still to discover how people will react to it.
This is definitely relevant as a problem has arisen since we moved that I had failed to anticipate. We have moved quite a few times in 25 years of marriage and each time I have happily got to know new people. I have gone out and about, joining the library, sorting stuff out and finally finding social opportunities. This is the 4th time we have lived in our own house so we know quite a few people here. In the past I have come back and chatted about being back and how lovely it is to see these people but that is a bit tricky this time. A lot of people here have no idea about my MND and goodness knows how I broach the subject.
A lovely lady rushed up to me in the supermarket, beaming and saying ‘Susan, how wonderful to see you. Are you back here now?’ I wonder what I should have said. What I actually did was slur ‘I can’t speak properly. I have MND’ What on earth was she meant to say to that? Aargh. Hopeless. Far too blunt. She held her throat and looked sympathetic when I said the first bit, then looked shell shocked when I said the second. Whoops. I am not sure what I should have said instead, so all suggestions are welcome. I am just pretty sure the ideal response wasn’t what I did say. My friend did well. We had a brief chat and then she repeated how lovely it was to see me. You will be relieved to know that I did then manage to say how lovely it was to see her too. Phew.
Today, back in the supermarket, I went to the till with my little bit of shopping and once it had been scanned I whipped out my trusty card, as shown above. The girl behind the till read it and then said ‘Thank you so much for showing me that.’ I was thrilled. That is definitely an approach worth repeating. Now, if I can just work out what to do about people I know but who don’t know about my MND …
Truth be told, I do miss happily chatting to people but there is so very much that is good at the moment. I know I keep saying this, and said it even before I knew I had MND, like here, but I love finding things to be thankful for. Some very small things bring me pleasure. I hung out the washing this morning and realised I could open up the pegs with my right hand. I am right handed but my right hand is a bit weaker than my left now so if my hands are cold I have to hang out the washing left handed. I loved doing it normally today. The sun is shining today and we are back in our own house. I have a wonderful family and friends. My friend Janette dropped round the day we moved in and came bearing flowers and … a pork pie. I adore pork pies at the moment, as I mentioned in my last blog post, so this seemed like manna from heaven. It was just fantastic.
I have one more bit of low tech kit to show you. I have to admit that these are things I wear a lot, though only indoors. I have something more snug for when I am outside. Here I am writing the draft of this post and showing off my fingerless gloves. I think they were once my daughter’s but I rummaged in a glove and hat bag and found them.
They are wonderful. If my hands get cold they do less, but wearing these a lot of the time lets me do all sorts of things. I have a feeling they look pretty odd when I wear them in shops or restaurants but who cares? They are fantastic.
This has turning into a run through of my MND at the moment. Is that bad? I’m not sure. What I really want to say is that I may have MND but I also have a huge amount to be thankful for and the good stuff far surpasses the bad. I hope it does for you too. I need a link to an appropriate video now. Do enjoy it.
A singalong to finish
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.
Laugh in the face of adversity
I have been told my humour is a touch dark at the moment. Truth be told, I was told it was very dark. But I do still laugh a lot. And they do say laughter is the best medicine. Examples of things that have made me laugh include a book promising to reveal seven foods for a long and healthy life. I can’t help feeling that is wasted on me when I have MND. When I said it had made me laugh I was told I shouldn’t really reveal that to anyone. Whoops.
I also have to admit that I was unable to suppress a laugh when I saw a card proclaiming ‘Best Friends for Life’. I know. I know. Both of those are in really poor taste. But that card really would mean less coming from me. Oh dear. I think I need to start laughing at more tasteful things. Time for a link to end the rolling eyes from anyone reading this I think.
I love the film ‘Singin’ in the Rain’ and so this is:
Make ’em laugh
It doesn’t remotely matter that the film came out in 1952. This is still very definitely worth watching.
My family laugh at my exercise bike playlist on my phone. It is true that I have quite strange taste in music and although I have more recent stuff they tend to keep hearing music dating from before I was born. No wonder they roll their eyes and laugh at the dodgy choices. I only use the exercise bike for 10 or 20 minutes at a time and happily cycle away with my playlist on shuffle. Today I got ‘Perfect Day’ by Lou Reed first. I know it hasn’t got the beat to work as exercise music, but I love it so I don’t care. Then I got ‘Mambo No 5’ from Lou Bega. Now that is far more like exercise music so I had a lovely time cycling along to it. But the best was still to come. ‘Fever’ by Peggy Lee.
Who can fail to laugh at the line ‘Fever, yea, I burn, forsooth’. Finding forsooth in a song just makes me incredibly happy. I suspect you can see why my family laugh at my playlist though.
A couple of weeks ago I read a review of a book called ‘When Breath becomes Air’ by Paul Kalanthi. I haven’t read the book but I couldn’t resist cutting out the review. I doubt the book has a single laugh in it and yet I would love to read it. Paul Kalanthi was an extraordinarily ambitious and high achieving doctor who discovers, in his thirties, that he has aggressive and incurable cancer. His reaction to this horrifying diagnosis, and the suggestion from his doctors that he was too sick to work, was to push himself harder than ever. The memoir was a small sideline while he was pushing himself at work. He died less than two years after diagnosis at the age of just 37.
It fascinates me how people react to a terminal diagnosis. Paul Kalanthi obviously became more driven than ever. I have never been hugely ambitious, so I haven’t become excessively driven. I have surprised myself though. I don’t know what I really expected but not the overwhelming desire to enjoy every day and find plenty to laugh about along the way.
I met up with a friend last week. Neither of us know this city well but we hatched a plan to meet for coffee and cake at a cafe TripAdvisor seemed very keen on. It was a lovely little cafe but the cake selection broke our hearts. They just didn’t look alluring enough. Now the trouble with not knowing the city well was that we weren’t sure where to go but we did know we needed better cakes. We sidled out of the cafe after our drinks saying we were going for a walk and skipped off in search of sweetness. Fear not, we had paid for our hot drinks first.
And we did walk. Forlornly we trailed up and down a busy road in search of a source of delicious cakes. We started to feel quite desperate. Eventually we ventured into somewhere Kate had been before. She muttered that she had only had breakfast there but it was really good. They did have cakes though. Phew. The yogurt topped flapjack I had was delicious. It still makes me laugh to think of our tragic walk in search of yummy cakes. And the relief when we tracked down suitable sweetness.
Spurred on by cake success I headed home and baked. Alright, I was going to do that anyway to provide sustenance for rugby playing girls the following day. Alas, the match was cancelled after my baking was complete so we were left with two types of brownies and one lot of chocolate flapjacks. It was a very chocolate themed baking session.
Thank goodness it was half term. My son was delighted to assist with goodie consumption. That did make me laugh too. No house with just three people in it should be left with quite so much chocolatey stuff.
Do find joy in life wherever you can. It is a lot more fun to laugh than to cry. Trite? Me?
I want to show you two other people who are taking MND in their stride and not sinking into doom, gloom and despondency. I have mentioned Lee Millard before. Do read his latest blog post. He writes weekly which is what I am meant to do but fail at. He is far more successful. His latest post was inspiring but made me laugh too.
Lee’s latest blog
Lee mentions Keith Smith in his blog post but I really want to bring him to your attention too. Keith has started his own youtube channel showing a bit of what his life with MND is like. Do take a look. This one shows him whizzing around and made me really appreciate his sense of humour but do watch his chat with medical students too. He is further down the line than me as his speech doesn’t slur at all, but I don’t have a wheelchair. MND varies from person to person. There just isn’t a set way for it to progress.
Keith whizzes and lives long
So, Lee isn’t gloomy. Keith isn’t gloomy. I am not gloomy. In fact I realise this disease has introduced me to an astonishing number of perky people despite what they have.
So, laugh in the face of adversity? Of course you should.
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.
Can we always think positive?
I love having a new year stretching ahead of me. There always seems to be so much potential. I always imagine a multitude of loveliness lying ahead. I am not sure any new year is a positive experience from start to finish but all my years seem to have had far more that is good than bad. This year will certainly test that.
When I started this blog it was because I felt the middle aged were largely ignored. Beautiful young people regularly feature in the press as do much admired older people. David Attenborough anyone? I felt I was part of a neglected underclass. Alright, I didn’t really, but there is less than you would expect about the positive aspects of being middle aged.
Admittedly increasing wrinkles and greyness are slightly depressing but we also gain wisdom as we age. Well, most of us do. That is definitely a positive thing. I am also a lot more confident than when I was younger. I shudder to recall how much I wanted to vanish into the background when I was younger. It is true that ageing comes to us all but I bet you know plenty of perky and positive older people. I know I do. I would far rather age, hopefully, gracefully than go down the plastic surgery to hold back the years route. That is personal preference though. I don’t mind at all how others choose to deal with getting older. Free choice for things like that is perfect.
As it turns out, I am not going to get old anyway. I was diagnosed with bulbar onset motor neurone disease (MND) on the 25th of November. So, is this a cause for doom, gloom and depression? No, of course not. Someone has to get it and there are people diagnosed with it much younger than me. Do read about Gordon Aikman who was diagnosed at just 29. He really is inspirational. There are many places where you can read his story but this is just one.
Gordon Aikman’s Story
Then there is also this blog from Lee Millard. He is more my age but writes really well.
Lee Millard’s blog
There are always reasons to be positive.
Yes, of course there will be some grim times ahead but at the moment my speech is a bit slurred but still makes sense and I eat more slowly. Oh, I have a slightly weakened right thumb. But that is it. No one is going to look at me and think there is anything wrong.
I know that this will change but there is still so much to be grateful for. Please feel free to ignore the next paragraph if it makes you feel sick. It might. Sometimes positive things do and what I am about to write really might make you cringe.
I have been very lucky. I had a happy, albeit very shy, childhood. I had fun at University, jobs I enjoyed and I met my gorgeous husband when I was 22 and have two children I adore. My husband’s job means we have had to move regularly but I have made some fantastic friends along the way. My brothers and their families are wonderful too. My father was someone I loved and admired more than I can say and my mother is still alive and keeps telling me I am the sunshine of her life. I really have been lucky. I liked to think all the longevity in my family would mean me living a lot longer than I will but that in no way diminishes the luck I have already had. There is still so much to feel positive about.
Someone who saw me three weeks after diagnosis, and didn’t know what was wrong until a couple of days ago, told me she had thought it must be something minor as I seemed so ‘cheerful and happy’. I was out for coffee with her, Christmas was sorted and I was able to do anything I wanted. Life really was full of positive things even if I did know I had MND. Of course I was happy. I still am.
The lifetime risk of developing MND is around one in 400 so it isn’t like the risk of developing cancer. I have just looked at the Cancer Research UK website and it says that one in two people born after 1960 (so that includes me) will develop cancer during their lifetime. I know not everyone who gets cancer dies from it but that really is a high risk. Yet no one should be going around thinking they have a 50:50 risk of developing cancer. That way does lie doom and gloom.
Think of your life now instead. I bet you have a lot to be thankful for. I know I do. Do feel free to refer back to my nausea inducing paragraph if you are in any doubt about my thankfulness. There is so much to be positive about.
Not everyone can bounce around optimistically from day to day. Think how boring it would be if we were all like that. But I really do believe we can all find some positive things about our lives.
As for my initial question, can we always think postive? You won’t be surprised to hear that I really believe we can. Not every minute of every day, but definitely overall.
The Ghosts of Christmas Past
This was going to be posted just before Christmas but it has migrated to today instead.
Over the past few days I have been thinking about Christmases in my past. There have been so many happy Christmas experiences.
Those happy experiences don’t necessarily include the Christmas when my brother persuaded my parents that we would like jointly was something called ‘Raving Bonkers’. This was too expensive for one of us but ideal for two. You may be unaware of this toy but it involved two robots boxing each other.
We were given it. My brother was thrilled. I wasn’t. Luckily that year a kind relation also gave me ‘The Miss World Game’. This was incredibly girlie and, truth be told, not very good but my uncle endearingly player it with me for hours. That was unbelievably kind of him.
What is the real overriding Christmas memory for you? I think of all the Christmas lunches through the years and all the people who have shared the celebrations with us but are no longer here. These may be the ghosts of Christmas past but it is a surprisingly happy festive thought. There have been so many wonderful shared Christmases.
I think of the lovely old people my parents would invite to share our Christmas meal when I was a child. My paternal grandfather would come for Sunday lunch every week from the time my step grandmother died until his own death seven years later so it was taken for granted that he would be there to share the turkey. My maternal grandparents lived until 2002 and 2006 so I was privileged to know them well for many years. They would come to stay with my parents for two or three weeks every Christmas and New Year. That was always exciting for us but I suspect pretty hard work for my parents.
Then there were the waifs and strays. Admittedly they weren’t really that but they were old people my parents knew who would have been on their own at Christmas if they hadn’t come to us. There always seemed to be a couple of them who would arrive for Christmas lunch while we were growing up, dressed in their best bib and tucker. It is the abiding memory of my childhood from this time of year.
Of course those old people are now long gone and several years ago I started being the one cooking Christmas lunch. But the old people live on in my memory. That is even more true of the more recent Christmas guests. My maternal grandparents I have already mentioned. My father-in-law died in 2002 and my mother-in-law in 2011. My father, who I have written about before here died in 2013. These were all people I knew well and loved.
So is it sad to look back on my own ghosts of Christmas past? No, it isn’t. There was so much warmth and love around every Christmas, and there still is. I love seeing all the old photographs of happy, smiling people that crop up in our photograph albums beaming over pudding as they model paper crowns. This year I have felt a pang of sadness for some of the people who are gone but I also feel incredibly grateful that I knew them. I was 38 when my maternal grandmother did. That was an amazing privilege. My children got to know both of my maternal grandparents which is fantastic. And while my husband never knew any of his grandparents my children will always remember my father and my mother-in-law and my older child remembers my father-in-law too. What a fantastic thing.
I do hope you had a wonderful Christmas.
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