Blog 6

Hi Everyone out there! It looks as if there are Blog-readers all over the place if my dashboard is not lying.

PLEASE NOTE THAT DUE TO TECHNICAL DIFFICULTIES, THE BLOG IS NOW RE-SITED AT:

lizoggmnd.blogspot.co.uk

As always, if you are new to this, the Blog is like a diary and the previous entries are listed below in reverse order. People have also been saying that it’s difficult to leave a comment on the Blog itself. If you do want to make a comment or suggestion, please email me on lizogg196@yahoo.com 
Or leave a comment on the Facebook MND Together page if you are a member of the group.

Anyway down to business!

MND Together on Facebook

– Let’s make a difference!

First of all, thank you to those people who have joined us on this closed group on Facebook. Membership stands currently at a healthy 60! Most are from Scotland or England, but with a few members also from New Zealand, Australia, Canada, Ireland and even Albania. Thank you to the MND associations of New Zealand and Ireland for posting on their pages.

There is a good balance in the group of MND sufferers and family members and all types and stages of MND / ALS are represented.

After Alan gave a short presentation at the Glasgow MND Forum, a number of people came on board from the West of Scotland. Thanks goes also to Lesley Brown who has drafted in a number of new members from the East of the country.

All in all, it’s a wonderful group of inspirational and courageous people, with incredible stories to share and hopefully, as a group, we’ll go from strength to strength.

How can you join us?

You need to be on Facebook. When on your page, just search for ‘MND Together' in the box at the top and place a friend request. We’ll do the rest. If you can’t find us, search for Alan P Hathaway (The Boy has an orange photo currently) and do the same thing. Alan will then admit you.

What’s it all about?

It’s all about bringing people – MND sufferers, families and carers – together to care and share. People seem to like the idea that they can talk openly in the forum and say things that they would never say in person. Talking out loud to strangers in the same position is impersonal to start with, but soon becomes personal and very supportive. We are altogether in this.

At first, each member is asked to introduce  themselves on the page, when they feel ready. Many of the postings are inspirational and courageous. It’s a privilege to read them. 

Very soon, people have started to compare symptoms and use of equipment etc and shared solutions and ideas, with lots of personalised messages of understanding and support coming through.

I’m also trying to set up a “theme a week” approach, looking at key areas of MND, to encourage people to get involved.

How involved do I need to be?

Once you have posted your introduction, so we know who you are, it’s up to you how involved you get. Taking part in postings can be interesting and informative as well as supportive and comforting. And it’s not all serious stuff, there’s also humour!

Importantly, we’re encouraging all members to download the Facebook Messenger app. This has two purposes. Firstly, it allows members to have private contacts with others through the page, without posting. Secondly, it allows the administrator to get in touch, if there’s a problem.

We’re not sure what direction MND Together will take, but our motto is “Let’s make a difference” and if we achieve that in any way at all, then it’s worthwhile!

Things to make life easier and better

Access issues

As my mobility gets poorer, we’ve been looking at either a ramp or a wheelchair  lift to get me up and down at the front door. I’m missing getting out into the garden just now – if indeed Spring is here - with all the daffodils, tulips and fritillaria now in full bloom.  The Boy is astonished that all these bulbs planted during a snow shower in late November, have actually come up. Any advice re ramps is very welcome. A friend has now installed a ramp at the back door, with a quirky artificial grass surface! Looks different - I'll let you know how it goes!

(Very!) basic communication 

We’ve also invested in a cheap walkie-talkie set, so that I can summon my other half in the morning. He’s in denial about his hearing, but really, hammering on the headboard was no longer working as my sore knuckles will testify!!  It’s also handy for keeping in touch with him when he’s in gardening mode - which, to be blunt, is rare! 

Reading                                                           

I’ve also bought a new lightweight table , from a certain well known online retailer , which slips under my chair and can be angled and height adjusted.  It’s proving very good for reading the paper or using my ipad. It won't take anything heavy, but does what it says on the tin and for under £10, it's pretty good!

Pillow support

Regular readers will remember the tale of the electric inflatable pillow raiser with the flatulence sound effects. Well, we have now invested in an unpowered one which alters levels a bit like a deck-chair. It’s helping me to maintain an appropriately upright position for sleep and therefore assists with the saliva problem during the night. The ametrypilene might be helping too!

Exciting Research Project - a new kind of Head Support

I said in one of my early blogs that I was having problems with my neck. So far I've had to use something called the Headmaster collar which does support my head but at a price. Years ago, Billy Connolly talked about a gamekeeper who had a groove at the back of his leg worn out by his devoted dog who followed him everywhere. Well I feel as if I have a similar groove under my chin thanks to the rather unforgiving and rigid chin support of the collar!  It's the only faintly adjustable collar on the market, and even when fitted it presses on your chest as well, as many of you will know!

The big news, however, is that I’ve been lucky to be part of a new MND collar research trial. My daughter, Nicola, found out through the Internet that Sheffield University was trialling this new support collar, called a Snood. We made contact with the University and informed MND health officials in Scotland of the research possibilities and after several months, ten people were selected to trial it in Scotland, five in the west and five in the east. I feel lucky to be one of them.

It is nothing like the Headmaster collar, which many of us will know and rely on. It is more of a wrap-around collar, which supports the whole head back and front and rests on the shoulders, thereby giving support in a more all-round way. See drawing above. Velcro fastens at the back to hold it in place.

The interesting feature is that it comes with a kit of support struts which can be velcroed on to the basic collar to offer support where you, as an individual, need it, eg under the chin, the jaw line etc.  It’s comfortable to wear and I do feel that my head is well supported. I’ve been trialling it for a few weeks now and I find it really helps when I’m watching TV or going on a longer car journey. The one disadvantage is that I can’t put it on myself, although I can remove it. Putting it on demands a bit of skill but The Boy is now able to do so quickly and without garrotting me!

The Snood is now being trialled in eleven centres across the UK. The University has asked us to direct all enquiries to Devices for Dignity who are managing the project. Their email is enquiries@devicesfordignity.org.uk

You can also look at the snood via their Twitter account @HeadUp_Bruno where you can see the MDNA mascot , Bruno the Meerkat modelling a custom made collar! Please take a look.

Here's two photos of me with the collar on too!

Eating  

There has been interest in finding new recipes to take us  away from soups and the basic stews and gravies that are our staple diet now. I think one of my favourites is a Mary Berry recipe for chicken in a lemon, cream and asparagus sauce. You can find it online, but I've adapted it so that it can be reduced to a smooth purée with mash. I use chicken thighs which are juicier, increase the crème fraîche by 50% and use tinned asparagus which is softer or you can just miss it out. It calorific and really tasty whether eaten whole or whizzed.

Any interesting recipes out there that will work for those of us with a problem in this area? Let me know and we can share.

 Keep reading and keep well

Liz

lizoggmnd.blogspot.co.uk

Blog 5

Hi everyone and welcome to Blog 5!  For those new to this, you can find my other diary entries below in reverse order. Can’t believe we’ve now been blogging for the last two months. Thanks to everyone who has encouraged me to keep writing.

Facebook News Flash

The main focus this time round is the launch of our new Facebook page: MND Together.  It might help if I explain why we’re setting this up. 

Clearly, an MND diagnosis is a major and life-changing event. After diagnosis, medical and other support is always put into action very efficiently, but sufferers and their families / carers can often still feel very isolated.  The disease also manifests itself in so many different forms and at different rates, so patients can be facing quite individual symptoms and issues. People then frequently turn to the Internet for advice, but this information tends to be mainly of a medical nature.

Currently, there is often an excellent focus on awareness-raising of the disease and on fund-raising but there are few opportunities for sufferers and their families to get together. Live forums are organised and can be places where general information is given and questions can be asked. But it is more difficult in these contexts for people to share openly on a more personal level. That is if they are physically able to attend these events.

We feel the time is now right to try to establish an online forum on Facebook, which would have as its theme Caring and Sharing. Local, independent MND groups like this already function successfully, for example, in the US and New Zealand. Several people who responded to the Blog thought it brought them a sense of reassurance and comfort.  It allowed people to compare their worries and problems and offer solutions.  

In a way, being able to write about your condition and share your thoughts and feelings “off camera” so to speak, perhaps offers people the opportunity to define MND in their own terms, rather than be defined by MND. If that makes any sense…

How do I join the group?

Our idea is simple. The private group on Facebook is called MND Together. It currently has a handful of start-up members. The idea is that MND sufferers and others involved with MND can be admitted to the group and can post their thoughts, feelings, symptoms etc. Other members can then post, share their experiences and offer their solutions in this private area.

It’s simple to join the Forum. On your Facebook page, simply type in MND Together at the top of the page and press search. Then send a friend request and you can join us. (Please note there is another group MND Together we stand, which is no longer in operation).

If for any reason this fails, search for Alan P Hathaway (The Boy’s Facebook page), send a friend request and he’ll immediately place you in the group. 

It might be helpful if you send a message at the same time through Messenger, to say where you are from and why you want to join the Forum.

However, our main issue at the moment is getting the message out there, informing people of the existence of the Forum. We are asking MND associations and other groups to consider sharing the information.  That way, we can ensure the maximum number of MND sufferers, their families and carers participate and benefit. If you can help with this, that would be great!

ME update             

As for me, I continue to gather equipment to make life easier and less precarious. I have recently added to my collection a natty little Zimmer frame, or "Zoomer", as the grandchildren call it.  The boy’s arm served its purpose, but increasingly I was in danger of taking him down with me! And this means I don’t need to wait to be taken from A to B. And there are days when his ankles, knees etc are not much better than mine...

I have a seat for the shower and am about to have a couple of grab rails fitted. It is disconcerting to discover that you can’t move through two planes simultaneously i.e. I can turn, slowly, and I can sit, but not at the same time. Last attempt almost resulted in a mild case of whiplash!

We have abandoned the electric pillow raiser. Aside from the flatulence issue, [see blog3] it just didn’t work for me. Too big, too uncomfortable and restrictive. So as a compromise I now have a small rail on the side of the bed which allows me to haul myself about a bit, though the Boy increasingly gets a dig in the ribs around 3.00am, which signals I need my pillows rearranged!

And I’m still as frustrated as ever at not being able to have the last word in ‘discussions’ with the Boy. If, by the time I’ve typed in my withering put- down, he has moved out of earshot – it rather loses its sting! Maybe just as well.

The Boy's Blog

Time for a quick input from The Boy (once known as Alan).

Hi everyone and thanks for letting me get a word in edgeways, Liz! 

Obviously, life has changed radically for us both in these last months since Liz’s diagnosis. I’ve given up working and am now happy to care for Liz full-time. As you’ll maybe remember, we’ve been together for almost 50 years, which makes us sound almost ancient – we probably are in many eyes! But our very close relationship has made this gradual transition fairly straightforward. 

Gradually over the months, I’ve taken over many of Liz’s household duties. She has always been allergic to vacuuming, dusting and ironing anyway. Her motto was always: "Behind every successful woman is a pile of laundry" So, I’ve now got used to taking charge of the shopping, cleaning and washing. She still won’t let me into the secrets of her “creative accounting” approach to finances, but I now take responsibility in the kitchen most of the time. She does still want to supervise kitchen activities at times, but I’m hoping the makeshift, padlocked gate at the kitchen door will stop this.

What do I miss? So many things. I miss her lovely voice, although have grown quite fond of her App vocals. I miss going out with her for lunch, dinner, coffee, drinks. I miss being able to travel, have a meal with friends, have long walks, go to the cinema and theatre, dance round the living room, have a good argument. Although life is now severely limited, a secure routine now cements each day and we still manage to find happiness and laughter in the day to day changes we have to make. Our philosophy is: No problems, only solutions.

                                   AND NOW FOR A QUICK SALES PITCH !

 

A year ago, I published my first book on Amazon Kindle.

ALL royalties go straight to MND (ALS) research. 

If you’re interested, you’ll find it on Amazon Kindle, under 

“Around the World in a Complete Daze” 

  by Alan P Hathaway (my pen name).  

Keep well and keep reading
Liz

Blog 4

Why me? Why NOT me?

Hello again and thank you for reading the Ogg-Blog. If you are joining me for the first time, previous diary entries can be found below. Again, we’ve had responses from all over – thank you! Some people have told us that it is difficult to leave a comment. I have a suggestion - see later! 

In the last few days in Scotland, of course, we had the wonderful news of government legislation that will entitle people with voice loss, access to the necessary communication technology. There is a positive feeling in the air that more people are now aware of MND, really care what happens and are prepared to support MND in a variety of ways. Thank you for your support, whoever and wherever you are and whatever form it takes!

The theme of this blog is basically personal / mental well-being. Or as I like to think of it -         'The Inside of my Head.' As we know, MND is a number of different conditions and is highly individualistic, affecting different people in different ways physically, at different times during the illness and at different rates. But regardless of the type of MND, you still have to decide how mentally YOU yourself will deal with it. Of course, I can only write about how I am, how I feel, how I'm surviving.

Coping Philosophy                                                             

In the Dark

Of course, there’s no denying that, for us, the first weeks after the diagnosis were, at times, dark days. And not just the first weeks. I went through a whole range of emotions and stages. With hindsight, I suppose part of it was a kind of grieving for the life I would never have again. I felt angry, sad, despairing. You name it, I felt it. MND makes your emotions very volatile anyway. It's part of the condition, so crying was all too easy. And some days it still is! We had to be strong, but we had difficulty at times finding a way ahead, a way of facing up to the condition. We didn’t want to be in denial, although that was a tempting place to be! We didn’t want to just let it happen. I suppose the philosophy I arrived at is quite simple and it developed as the result of a family holiday we had booked.

Finding my way...     

                                                           

We had rented a house by the sea, big enough  to accommodate the whole family for a week. Daughters, sons-in-law, grandchildren and, of course, us! It was booked before I got my final diagnosis. We decided cancelling was not an option and although it was a hard week in many ways, it was a wonderful week as well. We had such laughs amid the tears. It took me to the place I needed to be in my head. Yes, I decided that there was still a way of coping. 


In the end, I think it’s about not letting MND define who I am. 
I am determined to try to define MND in my own personal terms. 

You need to look at every day as a fresh start, a new day. If I have a bad day, when tiredness, impatience or frustration can take over or I'm faced with a new problem, I need to put it behind me. Life now must be about finding solutions to these problems and, if possible, finding some joy and laughter in the adaptations we have to make. It's about living in the moment and living for each moment. And it's about not fearing the future, because it hasn't happened yet.

Shining examples

And of course, there are some tremendous role models out there. Gordon Aikman, who is courageously fighting the disease and has very successfully persuaded the government to make legislative changes that will benefit MND sufferers in Scotland. Lucy Lintott who has raised over £100,000 while living with MND. And daily, as I surf MND Scotland and other websites you come across other people finding their own way, their own courage, their own philosophy. In Scotland, Alison McDonald, a courageous young mother of an 18-month old child said recently that a positive mind-set kept her strong and fighting. And on the other side of the world in New Zealand, Eco Yanaga used to run half marathons for MND. Her condition has now worsened, so she thought “Well, I suppose I can still fall”, so she did a sky-dive instead to raise funds. Quiet determination. Courage. Positive thinking. A “let’s just get on with it” approach. There are so many wonderful stories out there. It would be so good if we could get better at sharing them. See later.

Family and friends  

I know I’m very lucky not to be facing this illness alone in my day to day existence. I’m not sure how you would cope without another half – husband, wife, partner, friend or carer – being around. Sure, your relationship changes when illness strikes, but the strength of our long relationship (nearly 50 years!) lies in teamwork. Of course, The Boy has had to undergo a rigorous re-training programme, and not just in the kitchen as I think I mentioned in an earlier blog. But it’s the fact that you are facing the situation together. We work together on so many daily tasks and can still find opportunities to laugh at situations which are perhaps in the end not that amusing. Arm in arm through life. Now stronger arm in arm through illness.

Immediate family too provide such wonderful, unconditional support and we try to maintain our normal links with them. Our two daughters have been such a strong, unfailing presence; a bit of role reversal in operation - offering information, advice and, best of all, their love.   Our grandchildren are, of course, a source of much happiness. Their innocent lives continue as normal, providing excitement and laughter. And what is reassuring is that - young as they are - they simply accept the facts of my illness as being a natural part of me. The wheelchair, stair-lift, voice apps etc are just incidentals, which they have simply and naturally dealt with.

On the day of my diagnosis, one of the lovely nurses said to me, as I was leaving “Good luck on your journey!” And I would add finally that without friends, this illness would be much more difficult to bear. So many of our friends are walking alongside us on this journey and they will never know how much that means to both of us. They’ve supported car boot and garage sales (getting out of their beds at an ungodly hour to secure a good pitch!), taken part in Fun Runs, raised funds in other ways, organised barbecues and recorded their voices as part of the Voice Bank project. Others, not so close, have kept in regular touch by email or phone and that too has been good for us. Quite simply, they are there for us, when we need them.

I have tried as far as possible to maintain my normal social involvement, which again makes for a sense of normality. Having people for a meal has changed into afternoon drinks and nibbles. Girls’ nights (will we ever stop calling ourselves girls, we're all over 60!!!!!!)are still boisterous as ever and for these few hours, life feels just that bit normal again.

A final thought....                                                                              

So to some final thoughts about well-being in the face of MND and how to support it. A number of the responses to the Ogg-Blog seem to indicate that, despite all, there can sometimes be a feeling of isolation out there. But on a more positive note, people are also very willing to share the solutions they have found to the problems thrown up by having MND.

.

What I’m wondering is as follows. Suppose we try to set up a Facebook group uniquely for MND sufferers and their carers and families? It's been done elsewhere, for example the US and New Zealand.  Its aim would be quite simply to care and share. To give people the chance to be a virtual group, supporting one another and offering hints, tips and ideas.

As yet, we are still planning the best way forward, but as part of the thinking, I would love to hear your ideas out there. Is this worth considering? What would you see as its purpose? Can we go international? To this end, I have shared my email address below and I would be delighted to hear from you.

Please don’t hesitate to contact me at

lizogg196@yahoo.com

Keep well and keep reading
 Liz                                              

Posted 14th March by Liz Ogg

Blog 3

Hello again! For those of you who are new to this blog, the first two instalments, including introductions, are below, in reverse order. And once again, thank you to everyone who has read it and responded in quite large numbers on Facebook. Thanks to Emma Johns of the MND Association for England, Wales and Northern Ireland for sharing. I am also very grateful to Alison Mudie of MND Australia, who shared the blog, which has resulted in lots of really positive contacts from the other side of the world. G’day! And we're also on MND New Zealand. Kia Ora! I even had a response from a fellow MND patient in Albania. Once again, it’s a privilege to be sharing others’ experiences, emotions and frustrations.

Movement

Ah, how I remember Friday nights, after a couple of glasses of Bordeaux, when I would get out the inflatable hurdles and hurtle round the lounge, my husband shouting encouragement! But I’m afraid these days are long gone.  Yes, the theme of this blog is difficulty with movement and it’s clearly one of the most common symptoms of the disease.

When first diagnosed over 30 months ago with bulbar MND, my ability to walk was only slightly affected. After our first few weeks of emotional trauma following the final diagnosis, when we frankly didn’t feel like doing much, we tentatively began to make plans again. I’m not a great fan of the “bucket list” concept - we simply decided to splurge some found money and saved-up Avios points on visits to some of our favourite European cities. Looking back, these were wonderful days, but gradually over time, such holidays became more difficult and finally out of the question. We still go on short breaks when we can, but now mainly to Fife or our beloved Kintyre, in Scotland. Now necessary equipment takes up more and more boot space. Easyjet or Ryanair would make a fortune from me!

In the beginning, I naively thought that my limbs would remain unaffected for longer. Ah the innocence of ignorance!

In an attempt at a logical approach, let’s start at the top of my body and work down.

Smiling                                                                                                    

Smiling in social situations is tricky, particularly when you are dealing with the excess saliva at the same time. Since I can’t participate nearly as much in general chat, at times I just have to sit, listen and practise the social smile. But after a short time, the smiling becomes more difficult and my mouth and jaw muscles become tighter and more uncomfortable. Any photos have to capture the first attempt at a smile, otherwise, I can look as if I really don't want to be there. For this reason, I tend to limit social interaction to around two hours. Any longer, much as I would love to linger,  I can get too tired. And tired facial muscles make eating difficult. MND also makes you yawn, sometimes noisily. So between the smile that has slipped and the noisy yawning, I may not always look like someone having a good time!

Sleep position 

We’ve been experimenting with a pillow lift, as moving in bed is increasingly awkward. It sounds an excellent idea – an electrically controlled inflatable cushion under the pillows, that raises and lowers the upper body. The inflation is disconcertingly accompanied by sounds like a tyrannosaurus rex with severe flatulence. Disturbing  for The Boy (code from now on for husband ) should I decide to raise my pillows at 3am. Nonetheless, we’ve been inflating and deflating to our heart’s content, to see if I can get into that desirable final sleeping position, but I’m afraid without success so far. We’ll keep trying.

Walking

Walking has now become more difficult, with a definite weakness on the left side. I can still walk around the house a bit, unaided, although holding on to surfaces, just in case. I sway alarmingly without warning, and that's without the drink. And my left foot follows the rest of me with a two- second gap and doesn't always clear the ground. The Boy and I now sometimes take romantic walks together, arm in arm, from room to room. We particularly enjoy the stroll from kitchen to dining table and back. Reliving our youth together? - well, not quite!

Exercise                                                                                                            

I now have an exercise bike, to encourage muscle retention and strength and to increase my circulation. Of course it's not a normal bike, but a small floor model which I can use while seated in a chair. The Boy has bought me a bicycle bell to encourage me to use it, but exercise and I are strangers…. as all my friends would readily agree. See photo for proof of said activity!

Glacial hands and feet have become an issue. I used to try and sneak my feet over to The Boy's side of the bed, but being sneaky requires stealth and speed, two skills I no longer possess. However, I have a small furry animal, not real I hasten to add, which after a couple of minutes in the microwave, restores some semblance of heat.

Fingerless gloves are a good ploy for during the day and still allow some movement. I also have therapeutic putty, a kind of adult playdough which keeps the circulation moving in my hands. It would be more efficient if I used it more often!

Out and About.

In the end, I gave in to the inevitable and now use a wheelchair to get around outside. Measuring your length indoors and on a carpet is one thing. Doing so in public, another matter altogether, not to mention more dangerous. Although The Boy is a good car driver of many years’ standing, I am less convinced about his wheelchair skills. This probably dates from the day when he rammed my feet into the door of the hospital lift and blamed it on the lift! He’s definitely improving - according to him - but I still fear the backwards lunge as we come off, or mount, pavements. Not too sure either about reversing into lifts. And despite all, I just don’t like the “wheelies” he insists on doing in the broad fruit and veg aisles of the supermarket.

I also feel a bit like a Russian tank, once the wheelchair trolley is clipped on in front, although it is damned effective at running up the heels of the ladies who invariably occupy the middle of the aisle, chatting. The Boy does this with panache and apparently an apologetic smile that astounds. And it's not until you are in a wheelchair,that you realise how inaccessible shelves are. The hand signals I spoke of in an earlier blog become increasingly frantic and much less polite, as we speed past items not on the list. If it's not on the list, no chance!

Oh, and a serious complaint: when will people stop parking in disabled carpark spaces, when they are fully able-bodied? Or there is no disabled parking permit to be seen. I have noted it’s very often large 4x4s in particular. It incenses me and I would propose corporal punishment, public stocks or even car-impounding – for starters…

Going Up 

We’ve also installed a stairlift, which, according to The Boy, will allow me to continue to mess up the whole house! It has certainly given me back a great deal of independence, where the stairs had begun to take on the challenge of the Eiger. It’s also useful for sending piles of ironing upstairs. Again I can hear friends' hollow laughter! The grandchildren call it the “chairlift” and were quite disappointed that it didn’t swing precariously over the stairwell. However, offering to sell them tickets for the lift has thankfully dissuaded them from overuse of gran’s ‘stair taxi’.

So all in all, we lead life at a more sedate pace than before.

As someone once said "Stop being afraid of what could go wrong and start being positive about what could go right"

Keep reading and keep well.
Liz

Posted 16th February by Liz Ogg

Blog 2





February 4th 2016

Hi again! If you’re new to this Ogg-Blog, I’m Liz Ogg and you can find introductions and the first blog entry below.


I’d like to say first of all, a huge thank you to the large number of people out there on Facebook for your support. Not just friends either. Complete strangers too. And, some lovely blasts from the past from former pupils – great to hear from you! But a particular thank you to those people who have left very personal messages: fellow sufferers, families of patients, health workers etc. It has been truly humbling to read of the experience of others.


Thanks to Niamh at MND Scotland, we even made the “Scotsman” last week, which is good news, as everyone keeps trying to raise national awareness of MND.



EATING and DRINKING
                                                 
This week I'd like to offer some thoughts on eating and drinking and share some things that work for me. And I have to say we've had great support from my NHS dietician.


Image result for pizza images freeBecause I have bulbar MND, I've had to make huge changes to this aspect of my life. Not easy, because like most folk, I love my food. And the kitchen has been all mine for 44 years. Some might say I'm a bit of a cooking control freak, messy but creative!


 Gone, unfortunately, are the days of fish and chips, steaks, pizza, filled baguettes, chocolate cake and glasses of wine to accompany food. Because as many of you will be aware, one of the key symptoms of MND is an inability to eat and drink as before.



 SALIVA.


 As with many MND patients, excess saliva is a problem for me. If only I'd bought shares in Kleenex when this started! People experiment with a variety of medications to help them control this. Excess saliva can also obviously interfere with the consistency of food.


And my lip seal is not as effective as it was, so eating requires absolute concentration and absolutely no laughing. Swallowing can be difficult because your tongue can't move the food about. Who knew your tongue was so important? But with a bit of experimentation, I'm managing so far.


As I’ve said before, what has happened to me is not necessarily the same as everyone else. And it's very much a case of let's try and see what works.



DRINKING.


Due to lip seal and swallowing problems, I was having such difficulty drinking that I was just not achieving an appropriate amount of liquid intake in the day. So, after much discussion, eighteen months ago, I underwent a gastrostomy – ie a minor operation to insert a liquid / feeding tube into my stomach. It sounds drastic but, in the end, it really is a solution! I was in hospital for a couple of days afterwards and despite a few problems over the intervening months, it is generally working pretty well.


You may hear people talking about a “peg”. This is the little, unobtrusive tube leading into your stomach, with a small external cap which lies against your skin. It took some getting used to, but now it is just part of my daily routine to take in a pint of water four times a day. Virtually no liquids go through my mouth now. And the process now means I can laugh while I'm 'drinking' so I have become addicted to 'The Big Bang Theory ' on TV which passes the time and appeals to my sarcastic side!


 Do I miss drinking? You bet. There was nothing like a glass of red to wash down a Spag Bol , and a chilled rosé on a hot day slipped down a treat. But that's the upside of living in Scotland. Not too many hot days. Initially, I discovered that carbonated drinks were easier to swallow so I mixed soda water with my wine . Eventually, however, and with a heavy heart, even I had to admit defeat with this . And that's saying something. These days I'm more likely to miss a steaming hot chocolate. But more of that later.


Image result for free cookbook clipart images


EATING                                                                                 


Right. I need to be up front here. I have always loved cooking – and eating. I have a significant library of cookbooks, which I’ve collected over the last 45 years of married life. I love cooking, experimenting with new ideas and of course, eating. My husband’s consistent failure to lose weight is a testament to my fascination with everything from Jamie to just about anybody!
 But now, of course, it’s different. To be blunt, there’s now a lot of things I just can’t eat. However, I feel really lucky that I can still eat through my mouth, although with difficulty at times. And again everyone is different here.


So, what’s the problem? The consistency and texture of the food need to be right. And it's different for everyone. Very early on, we invested in a mini food processor – just the right size to deal with individual portions. This way, a number of the dishes which my husband eats can in fact be processed for me. Not all, but a good number. It does mean, of course, that the lovely range of textures on an average plate of food is now lost, but you can still retain a lot of the flavour, although all mixed up. It doesn't mean that when I listen to my husband crunch his way through a succulent piece of battered cod, that I wouldn't club him and steal it!!


There are lots of mini food processors out there, but as a big fan of Masterchef, I liked the look of the one they used, and reckoned if it could stand up to the punishment meted out by some of the contestants, that would do for me. So I either process individual meals, or if I batch cook- I think I was a squirrel in a previous life because I love feeding my freezer- I slam it all in the big processor and bag up individual portions. Because by the end of the day, I haven't the energy to cook, so I wouldn't survive without the freezer.


Image result for chef cartoon images freeAnd at this point I must pay tribute to my newly acquired sous chef, aka my husband. He's perfectly capable in the kitchen and cooks a mean raspberry soufllé. But you know what they say about too many cooks and broth! An obedience training programme is underway. Much needed as he's already reorganised my fridge and the freezer!! 
Seriously, as my arms , leg and neck muscles get weaker, I can't do it all , and rely on him to chop, lift and pour, leaving me to order him about (using the appropriate hand gestures) and do the stirring.


A typical breakfast for me might be: a whizzed pain au chocolat, soaked with hot chocolate and a mashed banana. (Husband says the banana is good for my mood swings!)
Lunch might be soup with some kind of protein whizzed into it. Sticky toffee pudding and milk.
Evening meal would normally be some kind of casserole and mash. And a different pudding.


I have been supplied with little foam lollipops which I can use to freshen my mouth between meals.


I have a number of recipes which work for me and I'm happy to share if people are interested. But for the moment I leave you with the image of Jack Spratt and his wife shopping.                    
Image result for jack spratt free imagesAs my husband heads for the low fat products, I'm piling in the full fat goods. It's a balancing act between good nutrition and high fat/high calorie foods to keep my weight up. MND causes muscle loss among all the other things, which in turn means you lose weight, so full fat crème fraîche, double cream and buttery mashed potatoes are necessary additions to my plate, leaving poor Mr Spratt the leaner options!


As before any feedback / suggestion very welcome. Dougie Connor has suggested alternative speech apps which he uses. See his comment at the end of my first blog. Other people have made suggestions in their comments which you can view. Once again thanks for reading.


Keep reading and keep well.


Liz

Posted 4th February by Liz Ogg

Blog 1    

January 25th  2016

Introductions

Hi, my name’s Liz Ogg. I’ve just turned 67 and two and a half years ago, after a number of months of tests, I was diagnosed with MND. It’s the bulbar form of the condition, so the first thing that I began to notice about three years ago was difficulties with my speech. Other symptoms have appeared since, of course.

I’m not quite sure why I want to post this Ogg-blog on the website. Despite the bad times, (and there are some) my husband and I try to remain positive and make the very best of what we have. It’s not always easy, but it’s the only way.

We try to follow two main philosophies each and every day:

No 1: Find a bit of happiness and humour in the changes and adaptations that we have to make.

No 2: Try not to just see the problem, but to actively search out a solution.

We’ve had tremendous help and support from both the NHS and MND Scotland staff, for which we are very grateful. But MND is such an individual disease that sometimes, we have had to find our own personal solutions.

What I would like to do is perhaps to help others by focusing on some of the main problems that I have faced and saying what we have tried to do to make things better. Some of it won’t apply to you, but hopefully, there will be some useful ideas. I’m going to start with perhaps the major problem for me – the inability to speak. I hope to cover some other topics in the weeks to come.

Speech difficulties

This has been an ongoing problem for me for about three years and was one of the first signs of the disease. I lost the power of speech finally about 2years ago. As a former English teacher with a strong strain of classroom sarcasm and a dry sense of humour, this has been a particular problem area for me. 

It might sound like stating the obvious, but you don't realise how much of your personality is conveyed through your voice. And when you lose that power, it can be very isolating .And with the loss of speech has gone the ability to move facial muscles in any subtle way. So my range of expresions is very limited. You can become an onlooker instead of a participant, but I knew I had to find a way round this. Communication is obviously much more difficult now and speed of response – particularly when having a “debate” with my husband - is tricky! I still want to have the last word, of course…

Everyday communication

It sounds very simple, but for everyday management of things in the house, we have devised a small set of hand gestures. Starting with the simple thumbs up / thumbs down for Yes / No. We’ve had to work at it, but we now have a range of signs for regular domestic routines, which work pretty well. It helps if you're good at Charades! Sadly husband's not!

I also have notebooks and pens left at several points around the house and in my bag, to allow me to have my say. But what has really set me free is the use of my smart phone / pad to speak through Voice apps. There are apps which you can buy, but I’ve found the best for voice quality is Type and Speak and it’s free to download. I use it on my android phone . I chose to use a voice app called Ivona text to speech. There's a selection of voices to choose from depending on where you come from and they're free to download. I’ve become quicker at typing in what I want to say and joining in any conversation. My friends have got used to me waving my phone in the air! This app also works on an android tablet.

Although it’s incredibly frustrating not being able to interact flexibly with my grandchildren, I’m

amazed at how well they have adapted – even the 3-year old – to gran speaking to them through her phone. And the ipad holds a certain forbidden fascination when their parents aren't looking.

Conversations

If I want to write more than a chat type comment I use a different app on an I pad. I sometimes prepare what I want to say in advance. For example, when I’m seeing friends for a get-together, I will prepare a “script” of what I’ve been up to or a set of questions to ask others. It’s given me confidence and friends have got used to me having a say in this way. You can then edit / change your script for the next event.

I can also prepare in this way for a medical appointment, to give the doctor / nurse as much info as possible, as efficiently as possible. I've found the best app for this is one called Pages from the Apple App Store. You use this like a normal document , but then choose how you want to upload it. You can email it, have it read out or share it. To have it read, which I mostly do, I use it  with another app called Voice Dream also from the App Store. There are a number of voices to choose from here. If you need more info,  I'll be delighted to help. It's very flexible and let's you store or change information as you need it.

I have an android phone and an I-pad. My husband says that suits my contrary nature!

I like to have a foot in both camps!!!!

Voicebank Project

About a year ago, most of our family and a large number of friends recorded our voices as part of the Voicebank Project in the Euan MacDonald Centre, Edinburgh University. The aim is to record as many regional voices as possible around the country and then produce a “voice” for people who have lost their speech, which is as near as possible to their regional voice. I hope to have my own voice app soon with a West of Scotland accent.

In the weeks to come, I hope to include some of the following topics:

Eating / Drinking / Saliva / Sleeping / Activity / Positive thinking.

In the meantime, feel free to get back with your own ideas on the above topic.

Thanks for reading this and keep well.

Liz

Posted 21st January by Liz Ogg