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