Blog 10

Hi All and welcome to Liz Ogg’s Blog 10

For those of you new to this, this is a long-running MND blog – a bit like a diary – and can be read from the very beginning in Blog 1, so you can chart my “MND journey” - if you feel strong enough, that is.  It’s been a few months since the last issue – mainly because of changes in my condition and difficulties with medication. I get tired very easily now, so sitting at the PC is no longer an option. My left hand is no longer functioning well, so using the i-pad or even holding the phone is more problematic. And holding my head up is much more difficult too.

Where's George when you need him?

Because of all this, I had advertised for a personal secretary, hoping that Poldark (Aiden Turner) or Lord Melbourne (Rufus Sewel) might apply. I had even decided there would be a scything demonstration as part of the interview! (Sorry, this will only make sense to British TV viewers).  I would even have settled for George Clooney on a part-time basis. But no such luck. So I’m stuck with The Boy, who is now doing my clerical tasks - and quite well, thank you!. I suppose he might look like George in the dark with a 40 watt light behind him, but beggars can’t be choosers in the end.

Yes, things have changed quite a lot in the last few months...

Food, glorious food!

Firstly, a few months ago, I decided to give up eating by mouth – it was just getting too hard work and also I just wasn’t getting enough nutrition. I’m now using the bottles of blessed supplement, alternating between the fibre and non-fibre versions and all delivered through the peg. The Boy tells me they are very sweet, vanilla-flavoured drinks, but in the end, I wouldn’t know. In addition, I no longer have the strength to operate the syringes, so The Boy assists me three times daily and I suppose it gives us some quality time together, watching the TV, box sets etc. Unfortunately, we have different tastes, but for the moment he just watches what I watch! And he has picked up a few hints and tips on scything!

I haven’t been out of the house now for a good few months. Nor has The Boy. We can no longer make regular doctor and hospital visits, so luckily, mostly, the professionals come to us.  Family and a wonderful group of friends do the shopping for us and help with gardening etc, if we need it. Now that I can no longer move about, I spend most of the day in my dual motor recliner chair and yes - watch TV. Last week, the chair suddenly stopped working and I had to stay in bed  for 24 hours until it was repaired the next day. You don’t realise how fundamental a piece of equipment can become to your wellbeing.

Because of my head position, reading is no longer possible and I really miss my books a lot. Friends pop in regularly to chat, but it needs to be at a fixed time to fit with my routines and I find that one hour is just about enough. I definitely get tired much more easily now.

Help in the morning!

We now have a care team visit each morning, to help with washing and dressing, which gets us off to a good start - although an early one! Although the team personnel changes, there is a real sense of continuity. All of them are helpful, efficient and friendly and have a good sense of humour. It’s also a relief to know that, if we need the support, it can be flexibly increased. A recently installed alert button system means that any emergency will be dealt with 24 hours a day.

Breathing

I’m also getting more periods of breathlessness now and the NIV (Non Invasive Ventilation) machine is a god-send. I often have a nap when linked up to it and it definitely evens out and assists my breathing. At first, I thought it would be difficult to wear and might be claustrophobic, but in fact, it is comfortable and does assist with sleep, although we rarely manage an uninterrupted night. 

The Boy says the sound of my breathing with the mask on is soothing – quote “a bit like being in a seaside B and B, with the window open, listening to the waves on the beach…” However, when I yawn with the mask on, it’s quote “like a 747 landing on the bedroom carpet…” I also manage to stage some remarkable “yawn-fests” too – possibly linked to the condition?

Bye bye bed...

A few months ago, with regret, we packed up our lovely superking-sized bed and I now have a single hospital bed. For the moment, we’re not using the hoist, ever since The Boy knocked himself out on it one morning in the dark at 4.00am! It’s great knowing that I can now alter my body position and can sit up without a mountain of pillows when I want. But of course, we so miss being together. The Boy is now in a single bed, just a short flight away. He’s luckily a light sleeper, so for the moment, I’ve put away the box of bells, whistles and hooters designed to attract his attention. Apparently, he will immediately hear the click of a clock or the scrape of nails on the metal bed rail!

The Fall!

Last week, The Boy staged a minor fall outside the house and ended up in A & E with three X-rays on his wrist and hand. This is to add to his A-Z list of injuries, including a snapped Achilles tendon while doing the Dashing White Sargent in Vienna and a 95% torn quadricep the week before Christmas 2012, caused after sliding inelegantly on a marble hotel floor. With his lower arm in an attractive splint, he has had major problems helping me transfer, so we had to increase our daily care team visits to four. All now seems thankfully to be on the mend.

MND Together, the Face Book page, recently welcomed its 150^th member and is doing what it says on the tin: bringing people together, affected directly or indirectly by this disease. Long may it go from strength!

All in all, our life is now lived in the slow lane, but we are both grateful for what we have. As a team, we treat each day as a new start, work together on the problems which inevitably arise each day and make the most of what the day brings. At least, we're doing it together! 

Tomorrow, we're having a bio bidet installed. It's amazing what you get excited about now! Can't wait...

To anyone out there reading this - MND patient, family member or carer – good luck on your own MND journey. Our thoughts are, as always, with you.  

Keep reading and keep well!

Liz x

Blog 9

Hi Everyone! As always, if you’re new to this blog, it’s a bit like an Internet diary and reads from the bottom up, most recent entry at top of page. Can’t believe this is number Nine!

The range of MND Support in my life

No point in denying it: my condition is changing again in a number of ways. My mobility is now very limited. I'm making more use of the wheelchair around the house. I've had more than a few bouts of breathlessness - had to call out the paramedics on one occasion. And eating / swallowing and weight maintenance are becoming much more difficult.

Over the three years since my diagnosis, I have had to seek advice and help from a number of different agencies, practitioners and other people. First of all, I wanted to say a public Thank You to all of them, but I also thought it was about time to talk a bit about the range of support that is out there in the system, if you’re an MND sufferer. I know that this blog is read in many different countries, as well as in different areas of the UK, so the caveat is the obvious one: this is just one patient’s view in just one geographical area.

I may also be stating the obvious at times too, but bear with me. Maybe it might start a bit of a discussion out there in the system. How well served are MND patients? Is there a difference between areas, between town and country, between countries even? How joined up is the patient care? Are there any ways in which it could be improved?  Has anyone organised a survey to assess how equal the quality of care is?

I would like to say right at the start that I have found almost every aspect of my personal support excellent. Almost always, I have received good and reassuring advice and prompt help and a kind and understanding word when they were required.

In this blog, as I piece together the jigsaw of my own personal journey through MND, I won’t mention names - just to avoid embarrassment, but I hope these individuals (if they read this) will realise how much I and my husband appreciate their help.

Initial diagnosis and ongoing support – the key players

As I’ve said before, the moment of diagnosis is inevitably engrained in our memory. Consultants can’t fudge their words. They need to be clear and practical. And to a certain extent, direct and cold. I just remember thinking that all hope was gone. There was a firm goodbye handshake from the consultant and a smile from a nurse and we were suddenly aware of the other person in the room who now took control of the situation and ushered us into an adjacent room – the MND Nurse, with whom we have built up a very personal and supportive relationship.

Right from the start, her warm, gentle, practical approach was reassuring. On that day, she said we could have as much time as we wanted to think, talk, ask questions. She assured us that she would be at the end of a phone or email and would guide us through what was to come. We see her every three months for about an hour and her focus remains totally on us and on finding practical solutions in a palliative context. An excellent quality of service, delivered with humanity and care and at the end of a phone, if we need her. What more could you ask for?

At this point, I must make reference to Gordon Aikman, who in Scotland has valiantly and consistently pursued government to raise awareness of the disease and has ultimately contributed to a better quality of care for MND patients. This has included a welcome increase in the number of MND nurses in Scotland in recent months.

At the same time we were referred to the respiratory clinic, where another consultant explained that the hospital’s approach was to work closely with neurology to monitor this particular aspect of the disease. Again the ongoing quality of dialogue with the consultant has been excellent – open, kind, practical, positive, focused on solving problems and removing concerns. Flight tests and checking of oxygen levels have been regular and reassuring.

When I had to have the feeding tube fitted, I came into contact with the gastrostomy nurse whose help became (during emergencies) very important. She treats me as an individual, is wonderfully warm and reassuring and has helped to make possible this important change to my lifestyle.

Local medical support – the players

From an early stage, our doctors / GPs (general practitioners) were closely involved in our case and we have maintained a reassuring monthly appointment with one of them. His understanding of our initial emotional turmoil was superb and he has continued to focus on every aspect of my welfare. When necessary, there has been a really good liaison between the doctors, MND nurse and consultant, where there have been difficulties with, say, medicines. I had not expected this to be so joined-up and cohesive.

Our practice also has a very good focus on palliative care. For example, I’ve been registered with NHS 24, so that they have access in an emergency to my case notes, which has already saved time when we had to call out the paramedics recently. And I now have a “Just in Case” case, which contains equipment and small amounts of medicines, should there be an out-of-hours emergency.

I’ve also had dealings with the practice nurses for blood tests and after several initial problems after my gastrostomy, I have maintained a weekly home visit from a district nurse, who has given invaluable advice on medicines, keeps a weather eye on changes in my condition and accesses further help where necessary. Their interpersonal skills and warmth make their weekly visit a pleasure (if that’s possible, when someone is inserting a needle in your arm or a suppository elsewhere!)

Other players

The nutritionist has been a regular visitor over the period, monitoring my weight and eating abilities and most recently, organising food supplements, as eating becomes more difficult and my weight has fallen. A physiotherapist has advised on walking and basic exercise and accessed equipment for me. The occupational therapist has assessed mobility and domestic needs and organised pillow lifts, commodes, zimmers, exercise machines etc. The Orthotics department at the hospital has fitted me with a foot and a hand splint. We also touched base with a speech and language specialist but by that stage, my voice had disappeared.

MND Scotland

After a diagnosis which confused and scared us, it was almost a relief to be handed an MND Scotland (MNDS) folder, containing a good range of information about the disease. And access to a very good MNDS website with information sheets and FAQs on just about every aspect of the disease.

Soon after diagnosis, a welfare officer from MNDS came to discuss benefits and access to a disabled badge and even helped us to complete forms. Recently, we have received a loan of a recliner-riser chair from MNDS.

Also, as many of you will know, MNDS offers a very full range of support, from access to a holiday chalet, through massage and aroma therapy and loans of equipment, to regular forums where you can meet other MND patients and their families. A wonderful organisation, raising awareness and funds and offering a wide range of advice and support!

Other sources of advice and support

Like many people out there affected by MND, there is always a temptation to surf the Internet and find out more. There are many benefits from this, if you are careful. Sites such as MNDS and the equivalent sites in England, Ireland, Australia, the US and New Zealand, plus the Euan MacDonald Centre provide a good source of bona fide information and insights into current research.

In the early months, I also had a couple of meetings with a holistic nutritionist. Although a bit “New Age” at times, (candles, incense, blankets and sometimes intrusive questioning!), I found it helped me to be calm and also introduced me to additional anti-oxidant supplements and minerals, which I have taken every day since. I believe they’ve helped.

And last but not least, there is the wonderful support offered by the now 118 members of MND Together on Facebook, which we set up a few months ago. An amazing group of mainly sufferers, their families and friends living in Scotland, England, Ireland, Australia, the US, Canada, New Zealand, Albania and Sweden! We share each other’s lives, our stories, hopes and worries. We share solutions to problems, pass on latest research and, most importantly, we care for each other. Long may this group prosper!

Reading over these few pages, I tell myself again how lucky I am to enjoy such a range of support. And I’m reassured that whatever the coming months may bring, I am in safe hands and can call on help, support and advice, whenever it’s required.

Thank you for reading this. It would be really interesting to hear of others’ experiences. You can do this in any of the following ways:

·        Leave a message on this blog, although it’s not always easy.

·        If you’re a member of MND Together on Facebook, post there.

·        If you want to email me privately, you can on lizogg196@yahoo.com

Keep reading and keep well!

Liz

    

 

Blog 8

Hi Everyone!

Blog 9 is imminent, but for the moment, here is Blog 8 – the shorter one!

Last Friday, MND Scotland bravely (and possibly foolishly), gave over their Twitter account to me for the day. The idea was to reflect on one patient’s day living with MND.

Before agreeing, I kept thinking: but I’m only one person; I’m nothing special; why me? And my form of MND (bulbar) is only one of the many facets of this cruel illness. But I was persuaded finally that this was to help supporters to understand the disease during awareness week and so I  said Yes!

Being a Twitter virgin, I got valuable technical help from Niamh Callan, the Communications Manager. But the biggest challenge of all was to keep to the limit of 140 characters for each tweet. Not 140 words, but 140 characters, including punctuation and spaces! As an ex English teacher, summarising should have been easy, but it wasn’t. However, once I got into the swing of it, it became fun, trying to balance the serious messages with some humour. As you know, it’s my way of coping.

The idea was to post regularly between 9.30am and 9.30 pm and try to reflect experiences, problems and solutions across the hours of the day, from getting up to going to bed. In that not everyone is tuned in to Twitter, I thought people might find it interesting to see what I managed to tweet within the given limitations. So not my usual blethery self!

In the end, I tweeted 14 times. There was a good reaction and many messages were re-tweeted. Hope some of the ideas got through as part of Awareness Week.

·         I’m Liz Ogg. MND from 3 yrs ago. Bulbar form - can’t spk or drink. Can still eat - just. Use app 2 communicate. Wish there was sarcasm app!

·         Not great night. Arranging pillows at 4.00. Saliva flowing. Legs weak today – accessing shower a pain. Don’t want husband in shower too!

·         Usual b’fast: hot choc, pain au choc & banana. Liquids & meds thro tube. Scan MND Together on FB- much activity! Plan imaginary sky-dive.

·         Friends coming pm. Husband helping with hair –ulp! Good to feel part of world. Would kill for glass of chilled white. Not same thro tube

·         Want 2 know more about me & MND? Check out my blog on lizoggmnd@blogspot.co.uk. Personal, down to earth & practical with a sense of humour

·         Lunch soup & trifle pureed. Food more difficult. Hard 2 move tongue & keep lip seal. Saliva thins food. Jaw clenches. Just want toasted cheese.

·         Great time with friends! Used app 2 have my say. Used my posh voice. All very aware of me typing & let me speak. Wish I could still laugh

·         Socialising great but smile muscles ache. Feet swollen too. Husband now wants me on exercise machine. Great! Found my swearing app in time

·         Using zimmer to walk, but with hub balancing me from behind. Much as I love him, miss free movement. Maybe after skydive, try rollerboots.

·         Dinner: lemon chicken/mash & crème caramel. Mouth/tongue tired but managed maj. Riser chair a boon as watch TV & try not to fall asleep.

·         Lovely nightly phone with family. Keeps me centred. Grandchildren positive force. Helps me forget. Muscles tired – can’t keep eyelids open.

·         In this last hour, thank you to MND Scotland for this great chance to post. And thanks to Niamh for all her support, technical and moral.

·         Looking forward to nightly routine – NOT! Thank heavens for stairlift. Need help getting undressed. My own Brexit! (exit from bra).

·         Palaver getting to bed, so tired. Sink in pile of pillows. Another day 2morrow. Thanks to all for reading. Good luck to all on your journey!

Thanks for reading. See you soon in Blog 9

Liz

Blog 7 -  A Carer’s Story

Thanks Liz for letting me have a say – at last! - through the Blog.    I think it’s important to say right away that we know we are lucky to have one another at this time. And we know that there are folk out there much worse off than we are. And we certainly don’t want people to think we’re special – we’re just getting on with it…

Most of the earlier blogs have been quite rightly from Liz’s point of view. But recently, we have looked around at others in the same situation, for example through the growing membership of MND Together on Facebook, (now 85!) and decided that it was the right time in the Blog to give The Carer a chance to speak. And maybe others will want to have their say too.

The intention of this issue is not, of course, to pontificate about how to be a carer or how to care. As we’ve said before, MND is a number of different diseases. And everyone is at a different stage. And of course, not everyone’s personal situation is the same. So… this is simply how Liz and I are coping with the changes that are happening and what my particular role is in all that.

I suppose when we look back at nearly 50 years together, (and after two children and three grandchildren), we’ve been lucky to live through a fairly long life of the normal thrills and spills. Lord, we sound ancient! Our relationship is a very close one – Liz is making a face at this point, no doubt! - but our closeness, love and strong teamwork is what has seen us through many a problem in the past. And it is clearly helping us in many ways to run this particular MND obstacle race.

What does caring mean for me?

- Trying to understand, discussing, rationalising, keeping afloat and finding solutions

According to the dictionary definition, a carer is someone who cares unpaid for a friend or family member who due to illness cannot cope well without their support. A very bald statement. But I suppose that gradually, over the last three years – gradually - I have changed from just simply someone who loves someone else and cares about her, to become someone who also cares for her, although I don’t tend to recognise myself by the term “carer”.

I suppose the whole process began at Liz’s diagnosis with the bulbar form of MND in July 2013. In our relationship, I’ve always been keen to talk things through, but in the days and weeks following our meeting with the consultant we were faced with the biggest personal challenge we had ever met in our life together. How could we talk about this? I needed to understand how Liz felt without upsetting her. I wanted her to know that I was right beside her every step. I wanted to know how best I could help. We spent hours talking, rationalising, crying, laughing, moving from negative to positive and back again. Just trying to get a solid foothold on life for the way ahead.

And I now see that one of my main purposes in life is each and every day to help to keep my other half afloat and able to view life with some sense of positivity. I think we manage that most of the time. I know that it’s working when I get one of her withering looks or one of her comments using the “sarcastic app” on her I-pad! Throughout the last three years, this approach has developed into a positive attitude from us both to each and every change  - Yes, there is a new problem, but let’s set it to one side and look for a solution.

- Helping Liz to talk out loud and make a difference

An important part of Liz’s approach has been that she wants, as far as possible, not to be defined by MND but to define it herself. I have always encouraged her to talk out loud about the condition, raise awareness among others and feel that she is able to “make a difference”. Her very positive approach has led to the success of her Oggblog and jump-started the now growing and inspirational membership of MND Together on Facebook which we manage together.

- Domestic changes

To return to the very practical, one of my main duties is to support Liz’s everyday routine: getting up, washing, showering, hair-washing, dressing, liquids via the peg, meals processed and served, help with movement around the house, medication ensured, bed-time procedures, overnight assistance etc. I suppose that that is the broad structure within which everything else now has to be planned and happen. I believe all that now runs fairly smoothly, although Liz still draws the line at me helping too much with her hairstyling! I think her hiding the comb and hairbrush is a bit much though…

Because we were both always working, I was never averse to taking my share of household duties, so I know the ropes. Believe it or not, I’ve not been reluctant to iron in the past, although I confess that the duster, polish and I would still rather remain strangers. And inevitably, the cleaning, washing, hoovering etc have to be fitted in over the week, within the routine.

- Shopping and Cooking

The biggest change for me is now being virtually in sole charge of the shopping and cooking. Liz always enjoyed cooking and, apart from my few “specialities”, I’ve always left her to it. Like most men, I am a fairly efficient supermarket shopper (Shrieks from every woman in the land!) I have a list and that’s what I buy. I don’t need to fondle packets of this, study a new shampoo or buy three of something which I don’t really need anyway. (Further shrieks!) And as for the BOGOFs!

OK, I admit that I have given in and have programmed some microwaveable meals into the menus for ease. Moussaka, lasagne, parmigiana, spinach and ricotta cannelloni all work well for Liz when processed. And I’m quite happy to build in a fish supper for me as a reward. But generally, I’ve tried to follow Liz’s great culinary example and her recipes – she’s great in the kitchen! – and cook from scratch. With a big emphasis on healthy ingredients, bags of flavour and high calorie levels. Keeping up her general health, strength and weight is paramount.

In recent months, I have made lots of soup, processed it and bagged it in single portions for the freezer in what I (pretentiously) call the “Soup Library”. This has simplified Liz’s lunch a lot and gives her a good variety of veg and vitamins. Now that she can no longer work in the kitchen, Liz has also encouraged me to batch cook main courses for the freezer. This has been more of a learning curve but I keep telling myself that if you stick to the recipe, you can’t go too far wrong. Liz favours these recipes because they can feed us both, hers, of course, in a processed form. They include lemon chicken, spag bol, coq au vin and beef bourguignon. But our favourite recipe is the delicious Pancetta Spaghetti – I’ll post the recipe at the end. Honestly, if I can make it, anyone can make it!!

- The art of chemistry in the kitchen

Of course, I’ve had to learn the art of culinary chemistry! As I’m using the processor, the secret is whizzing the meal until it is broken down enough to be a smooth consistency. Trial and error is the name of the game. I’ve also got used to using single or double cream, crème fraiche, gravy or stock to get that final magic consistency that suits Liz’s swallowing capabilities. The “thumbs up” after her first mouthful is always a relief.

Desserts are very important for Liz to keep up the calorie intake. And just for information, I’ve found the following work for her, sometimes whizzed:

• Thick yogurt mixed with some melted chocolate
• Lemon or gooseberry fool with cream
• M and S crème caramel, rhubarb trifle, sticky toffee pudding (whizzed, then add milk)
• Lidl Tira Misu
• Home-made Eton Mess and raspberry soufflé

- Personal changes

Of course, life has changed dramatically for us both. Despite the huge issue of Liz losing her power of speech shortly after the diagnosis, we have become used to the silence and the art of one-sided conversation. I’ve also got into the habit of providing a two-sided conversation, including her sweary bits! But, as has been said before, Liz makes excellent use of her voice apps to make her point perfectly clear. She particularly likes using her “Royal” voice app to swear like a trooper or uses a variety of rude hand gestures to indicate frustration or impatience with me! There’s no doubt our continuous, daft sense of humour is the oil that keeps the engine going every day.

Of course, our universe has inevitably become smaller. In the first months after the news, we still managed to travel abroad and had some memorable times, but in the last year, this is no longer possible. Our social life, although still lively, is also much more limited. We can no longer go for meals, invite people for meals, go the cinema, concert or theatre. But our life is now a richer one on a day to day basis. The support and back-up of family and friends which we enjoy is worth its weight in gold.

I would be lying if I even suggested that being a full-time carer was easy. It is hard. It is full-time and very tiring – I tend to fall asleep immediately my head hits the pillow at night. And it’s not unknown for me to have a quick nap of an afternoon, although that could be age, of course! But in the end, I would not want it any other way. Looking after the person you love when they are ill is a privilege.

I have always been a “half-full” kind of person and I need to keep that philosophy to make this all work. I remain mentally strong and physically as strong as I can be. But in the end, what gives me my inner strength is the huge courage and positivity that Liz shows each and every day.  Of course there are bad times and some really low moments, but Liz keeps bouncing back and with my support, always manages to deal with whatever the illness throws at her.

Although it should be the other way round, Liz’s strength of spirit gives me the power to keep going. That special smile at 4.00am when we’re re-organising the pillows. The thumbs-up when a meal has worked well for her. The way she hits me over the head when I've bundled her into the car the wrong way.   The rude sign when I threaten to do a wheelie in the aisle at Asda. The sarcastic comments stored on her app. Her tireless work to spread the word about MND.
Quite simply: She is a star and I love her.

Thanks for reading this and best wishes to all readers!
Alan

Pancetta Spaghetti recipe (for 2)

Pack of watercress
8 slices of pancetta, cut into small pieces
Punnet of baby plum tomatoes
Crème fraiche
Parmesan cheese
Olive oil & fresh or dried thyme
Spaghetti or angel hair pasta

• Preheat oven to 220C
• Place cut pancetta in small non-stick metal oven dish and put in oven for 10 mins
• Add the tomatoes, two tbs of oil and scatter with thyme. Mix then cook for another 20 mins
• Time your spaghetti (angel hair better if problems with swallowing)
• Place watercress into a large colander over the sink and when pasta ready, pour pasta and water over the watercress. (I do this in two lots to cope with Liz’s meal first)
• Mix portion of pasta and cress a little then place back in pot
• Add one portion of the pancetta / tomato mix and add two tbs each of crème fraiche and parmesan per person
• Mix thoroughly and serve
  * Delicious!

 * ALL PHOTOS BY PAUL HAMPTON, COMMISIONED BY MND SCOTLAND

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