BLUE EYED SYMPHONIC SONG

Blue eyes brighter than a brilliant summer sky
Dark brown hair abundant around your head
A face that's comely you cannot deny
A voice that would recall us to our 'Daily Bread'

Roger in name and Ridley in nature
You held steady to the faith you professed
You always walked towards the future
Ready to be faithful and fully blessed

You loved people, it was plain to see
Always ready with a welcome
Food, beer or a cup of coffee
No one was ever barred from your home

Your heart burned for the gospel
You could speak it plain
On Sundays we'd find you beside the well
Drawing water for the thirsty again and again

If travel involved a trip on a train
No one was happier or easy to please
A joy in the journey you didn't have to explain
But boy were you an easy target to tease!

You captured a story not only with words
But with your tone of voice and expression you gave
Breath and life to people, flight to birds
And a lost world invariably you'd save

We were looking so forward to seeing you as Gramps
But your light burned brightly and not overlong
Still you filled passports with numerous stamps
And leave us with a symphonic song


Jocelyn Ridley
17/12/2011
In Memory of my Dad 19/5/1953 - 15/12/2011

MY DARLING ROGER

My darling husband and my very best friend and companion Roger passed into the presence of his Father in Heaven this morning 15 December 2011 at 8.30. He died peacefully at home, which was his wish. He was 58 years old and gave in to the ravages of the dreadful and debilitating Motor Neurone Disease after a very tough fight of just over 2 years. He was so brave and stoic and just didn't want to give in.

I haven't asked Stewart's permission, but I am sure he would not mind me sharing this very special poem he has written about his dear friend Rog. We met Stewart (from Cairns) in Basel, I think it was in 2007 and we became good friends with him and his gorgeous Swiss wife Katja.



My friend left this world today.
His name was Roger Ridley.
Although MND came on slowly.
It took him way too quickly.

"You must meet Rog and Gaynor".
I was told at Centrepoint morning.
Who'd have thought a short time later.
He'd officiate at my wedding.

He was my go-to guy.
For all things model and manly.
We spent hours on building, walking and talking.
And the beer went down very gladly.

He left a lasting impression.
On me and everywhere he went.
So long to my mate Rog.
Thank you for being my friend.

Stewart

Roger continues in Bethesda. They are talking about letting him come home on Monday 12 December, but will make the decision on the day. We will be prepared for whatever happens.

Just when I think it can't get any worse, it does! I have had the most horrendous week and have leant very heavily on Irene. She has been thinking for me and doing a lot of running around. I am so thankful I have her close by and thinking more clearly than I am!

We had a meeting with the Dr's Monday morning trying to figure out a plan for Roger's care. Roger was booked to have a lung function test yesterday (Wed. 7 Dec) but we cancelled it as Roger didn't want to do it and also there is no point. It was going to be very difficult to get him to the other hospital anyway, as he hasn't been out in the wheelchair since his admission to Bethesda on 5 December. He is weak and very tired all the time. Roger and I wanted him to use a VPAP machine at night to help with his breathing, but it is too late for this now.

Roger had a chest xray last Thursday and his left lung has partially collapsed. His breathing is shallow and sometimes difficult, especially when he is coughing. I think this really frightens him.

One of the upsetting things for me is that Roger wanted to do a Medical Health Directive and when we went to see our lawyer back in August he said what we needed was an Enduring Power of Guardianship. Well, let me tell you this is not correct. Now it is too late for Roger to do a Medical Health Directive as he is not always thinking rationally. So now I have to do a Enduring Power of Medical Guardianship! Please, please my dear friends make sure you all do a Medical Health Directive stating exactly what medical help you want to happen at the end of our life, otherwise you are at the mercy of the medical profession to make those decisions for you. It can be so very complicated let me tell you!

So many things to think about and I am feeling drained, flat and exhausted. Fortunately Jocelyn arrived yesterday and I had my first good sleep in a long time. It is lovely to have her here with me at this difficult time.

On a lighter note. Irene and I were spending time with Roger after the Dr's had left on Monday morning and Roger seemed to perk up. He said "So, let's have a game of scrabble"!! We looked at each other in amazement and said "Why not"!! How precious is this! "Who won", you ask? "Roger of course"! He is the scrabble King! And we DIDN'T let him win either. He put the last word on the board PERSONAL to use all his letters and get a bonus 50 points!! Irene and I might have said a few little swear words!! I was left with a Z, Q and X ! ! Needless to say I lost. But is was so special to spend this precious time with our beloved Roger.

Our beloved children Tim, Jocelyn and Glenda have been such a strength to me in these difficult days. They are so tuned in to how I am feeling and I just love them very much. I know it is so far away for them, being in Melbourne and also not being able to talk to their Dad. I've had lovely comforting phone calls from them and their wisdom and understanding is amazing. It just isn't easy at the moment for any of us.

Tom and Amy are amazing to. They are loving and supporting Glenda and Tim and, as much as they can, Roger and myself. Not easy when big decisions need to be made.

Thank you my very treasured family. I truly need you at this difficult time.

Irene took Roger and I to Bethesda on Monday morning. We took the wheelchair, cough assist machine, Roger's new light writer (which speaks phrases for him), his tins of food (mains as we call them) and of course his suitcase.

Roger was very weak and not well when he woke up Monday morning. He did not get much sleep, coughing again being a problem for him. It was a huge effort for Michael to get him ready. The hospital wanted us there at 10am. All my poor darling wanted to do was sleep.

Admitting Roger (for just one week I think) was a long drawn out affair and I am relieved Irene was with us. We had to wait for the Dr for quite a while, but it was worth it as she was just so lovely. She mentioned about Roger staying in for 2 weeks, but I don't think I want him to stay that long. It is so hard and full on when he is at home and I don't always get a lot of sleep, but I miss him so much. If I can only get good sleep a few times a week I think I will be okay.

I have to tell you that I can't handle anything to do with the 'serious body piercing' as Roger calls it!! (The tube insertion in the stomach). It need to be cleaned and turned each day and I just can't do it! I have managed to do everything else, but this all turns my stomach green. The nurses have been cleaning it up and reducing the oozing. Sorry, but this is life. This is what we deal with each and every day!!

I've been feeling very sad this week. I have been enjoying being on my own without the home invasion of carers coming in, as lovely as they all are. I haven't been motivated to do too much when there is much to do. Our little home is looking quite nice as I have pushed all the 'hospital equipment' into the spare room out of sight (apart from the huge lift hoist).

I am having to make other hard decisions, which I don't feel right about doing. Darling Tim has been helping me and it's good just to talk things over with him.

If you visit I might now greet you at the door with "You are now entering Princess Gaynor Hospital"!!

On Monday a hospital bed arrived for Roger. Dear Russell dismantled the bed in our spare room and I gave the room a thorough spring clean before the bed arrived. Roger is now settled in the room. So very sad that we can no longer sleep together. I hadn't given this a lot of thought up till now and it is just sinking in that we probably won't sleep together again. Just another little bit of grief for us both to try and bear.

With the bed came an electric hoist for moving Roger in the future. What a monster. Irene and I had training on how to use it Wednesday lunchtime. What an ordeal and how very scary. If I have to use it all the time I am going to be ABSOLUTELY EXHAUSTED and I thought I was that already. It is very involved as it has to be moved into place, etc, etc. It can't even be maneuvered into the bedroom because it is so big. Two people can lift it in!

Manny came on Tuesday 10am to talk about communication for Roger. He is such a darling and ever so gentle with Roger. It was such a pleasure to have him in our home. Roger now has a light writer which can speak phrases for Roger. He also has a microphone that he speaks into so that his voice volume can be improved. Manny also left a portable doorbell which I can carry with me when I am outside or in the other bedroom. Roger can touch a button to contact me. This is particularly helpful at night now that we are in separate rooms.

I have been sleeping much better, which helps me to get through each day just a little better. Roger has had 2 good nights sleep in the bed but last night his coughing started again and he didn't get much sleep at all. It is Thursday night and he has started coughing again and is most miserable. There is nothing I can do to ease his distress and it breaks my heart to see him so upset. I think the coughing is to do with the Motor Neurone Disease and not hayfever. His breathing is much more shallow and he just can't get a good cough. We will be seeing a breathing specialist again in a couple of weeks.

Roger is going into Bethesda for a week this coming Monday 28 November. He is going in for 'symptom management'. Hopefully whilst he is there they will be able to get to the bottom of his coughing and relieve it in some way. I think he might have to go on a breathing machine at night. I would prefer they do it in hospital and he brings it home from there.

We are both struggling to manage our own grief and other people's as well. It is so hard to be on this journey and neither of us have the energy to give anything to anyone else. We both find this hard as we have always freely given of our time to others in the past. Our energy levels are very low and we don't cope with too much social activity these days. I find it difficult to speak on the phone, answer emails and have people in our home. How very different are our lives now than even 6 months ago.

Thanks for your thoughts and prayers. Please bear with us during this very difficult time.

Life continues to be a struggle for us both. Roger's cough is persistent and worrying and has made him very weak and set him back quite a bit. How it breaks my heart to see him so weak and unable to do anything at all for himself really. I am living each day by a thin edge and it is so easy to push me over the edge. Inside I cry most of the time. I am sleep deprived and exhausted.

Our beautiful son Tim visited us for 6 days recently and it was so good to spend time with him and to have his help with Roger. The time went ever so quickly but we felt very blessed to have him visit us.

We have tried to do some nice things with friends. Our friend Boyd Owen from The Ten Tenors was in Perth for a couple of nights and we went with him, Tim and Russell and Rene to The Naked Fig for brunch. We love this place!

Lovely friends Ruth and Andreas are visiting from Germany at the moment and we are enjoying spending time with them, even though we are very tired and can't cope with too much happening in one day. They are very understanding. We took them to Fremantle for fish and chips and then coffee afterwards, but I don't think the fresh air was good for Rog. We didn't have a good night's sleep.

We were so desperate on Thursday I requested emergency overnight respite and our dear carer Michael came and stayed overnight and looked after Roger. I went to bed at 9.30pm and woke up at 10.08am Friday. But I can tell you I wasn't bouncing with energy when I awoke.

I have officially left work as I just can't cope with all that needs to be done. Bit sad as I loved my job but my darling Roger is my top priority and I need all the energy I can get to look after him.

Roger is no longer walking and his speech is very hard to understand. He still loves to talk, but he is very quiet and you need to really concentrate when talking with him. There can be no background noise. Now he basically sits in his electric chair and reads or does his crossword. On Tuesday we are having a visit from Manny to talk to us about aids to help Rog communicate.

Motor Neurone Disease is unrelenting.

OUR FRIEND KEVIN

Our dear friend Kevin visited us for 2 nights on his way home to Basel. What an absolute treat it was for us both, and though Roger was quite unwell with hayfever, we were able to have good chats and we did manage to get down to one of our favourite restaurants "The Naked Fig" for Tapas late Saturday afternoon.

Thank you Kevin for being so loving and understanding of our situation and fitting in so beautifully as we struggle with all the grief that Motor Neurone Disease brings to our lives each day. You truly are a very special friend and we are so glad you were able to visit us and bring joy into our lives at this difficult time.

Kevin and Roger outside The Naked Fig looking out over the Indian Ocean and the
beautiful sunset after a very ordinary day weather wise!

HAYFEVER

My poor darling has totally been inflicted by hayfever and it is making his, and our, lives a misery. I must say it has given a whole new meaning to hayfever as Roger struggles with Motor Neurone Disease. He coughed uncontrollably for 3 days and I just didn't know who to turn to. No-one seemed to understand our situation and we were both so tired and beside ourselves with lack of sleep.

In Perth we have had such good rain that there is so much pollen around at the moment and many people are suffering as never before.

We are enjoying our new bathroom and have now got everything back in order. The house is looking good actually, especially as we have now completed the front small garden as well. We even have a picket fence that needs to be painted!

BETHESDA ROCKS ! !

Roger spent 17 days in Bethesda and he was treated with much care and dignity each day. The care and nursing was exemplary and this made Roger's stay enjoyable and gave him a feeling of being safe.

For me it meant I could get things done, that are otherwise difficult as I care for Roger, and I felt I didn't have to visit him everyday as he was being taken care of in a wonderful way.

We just want to say a big thank you to the nursing staff at Bethesda who are very special people caring for people experiencing deep sadness in their lives.

THANK YOU FROM ROGER AND GAYNOR

GO CATS

Our beloved GEELONG CATS were in the AFL (Australian Football League) Grand Final last Saturday afternoon. Paul picked Roger up from Bethesda and brought him home to watch the game - just the 3 of us (but we made enough noise for a crowd!!). We enjoyed watching a great game of footy, great food and each other's company. We all wore our Geelong tops to Church the next day! What a hoot!!

OH - I ALMOST FORGOT WE WON OF COURSE ! ! ! !

Roger sitting at his room window at Bethesda (taken by Joel on his I-phone)

Roger was taken to the Pata Negra for Tapas with Paul and Joel. As you can see, he really enjoyed himself!!

I went to visit Roger yesterday afternoon and he was looking so much better than previous weeks. He has regained strength, is walking much more confidently and is much happier in himself.

When Paul and Joel arrived around 6pm they asked why I was visiting when I should be resting!! How cute! Anyway, I left and let the boys perform their magic on my darling! I am so touched by their love and compassion towards Roger. Paul is married to lovely Colette and Joel to gorgeous Louise. They are young marrieds who go to our Church.

Bethesda

Roger went into Bethesda Palliative Care yesterday for a week. I received a phone call from them as I was in the hospital foyer asking if we were coming! Obviously they have no idea what it takes to get my beloved ready each morning. He was looking his best, I felt very tired and exhausted and I wish I could have the bed and view he has for a week! But his circumstances are just horrible, so any pleasure he can get, I don't want to deny him (coffee and chocolate mint slice for breakfast!!!).

Roger is all settled into Room 5 in a 'Room with a View" (just for Jocelyn and Glenda's benefit). He has ladies fussing all over him and I think he is going to be very happy there and maybe won't want to come home!! I will take a few photo's when next I visit Roger and post them for you to see how happy he is. He has asked me to bring the binoculars for him to use.

I did not realize the tube feeding routine would be so rigorous with feeds occurring at 6, 10, 14, 18 and 22 throughout the day. But I have been told that this will settle down. It's like feeding a baby all over again. Cherylyn our Care Adviser from MND Society has reassured me the feeding will not be as regular and I will be able to feed through a syringe eventually.

I had a good nights sleep last night. It is good to have some time for myself and I'm not doing too much at all.

I continue to work at Star Settlements / ijrproperty just down the road and I am really enjoying the work and the lovely environment. I work 24 hours/week and hope to continue for as long as possible.

Yesterday was the most awful and traumatic day for us both. We had to be at the Royal Perth Hospital by 7.30am. Our darlings Irene and George were kind enough to drive us in. I couldn't believe that once in the prep room I had to undress Roger myself and put him in a hospital robe. I then had to get him on to the bed and put the sides up. Never in all my life have I wanted to be a nurse!! What on earth am I doing.

Lots of tears for us both yesterday. I felt awful leaving Roger in the hospital but knew there was no point in me sitting around. It's such a depressing place to be, with all sorts of weird and wonderful people (including us!!).

I was surprised to get Roger's sms at 10am to say he was back in the prep room and the PEG was in! As I had a long list of things I wanted to get done whilst Roger was being looked after, I didn't get back to the hospital until around...... actually, I have no idea, but I think it was around 4.45pm!! He had not been fed, he was very hungry and extremely thirsty. I was a bit cross about the lack of nursing, but of course, hospitals are always understaffed.

I'd been told by the Dietitian that Roger would need to stay in 2 nights so that he could recover and I could learn to feed him via the tube. I didn't dare tell Rog as I knew he would be more upset. I thought I would just wait to see what today would bring.

Anyway, the long and the short of it is that we are now home (thank goodness), but we are both very, very tired and a bit sad. It has been a difficult few days. Roger is in pain from the PEG insertion (directly into his stomach) and he is quite emotional, which is understandable.

There is a highlight. Our Football Team - The Geelong Cats, won against the Perth West Coast Eagles to go into the Grand Final next Saturday. Our dear, dear friend Paul - a Geelong fan - came into the hospital to watch the game with us, and brought lots of party food and drink. It was so lovely of him. His wife Colette bought Roger a giant chocolate football (yum, yum!!).

Roger goes into Respite at Bethesda on Monday 26 September for a week. I think this is good, especially as he gets used to the PEG. It also gives me some much needed rest to cope with the coming weeks and months. Here is the link if you want to find out more about the hospital. It is in the most beautiful location and I can't wait to see it.

Bethesda Hospital www.bethesda.asn.au/

Our bathroom renovations start on Monday 3 October, so it is all systems go here in the Ridley household!!

Thanks again for all your thoughts and prayers. WE CAN FEEL THEM.

I want to share some funny ditties with you just so you know it's not all doom and gloom around our place!!

I was helping Roger in the shower the other week (whilst in Melbourne) and I said to him, "Just hope out the shower darling"! His reply "Yeh sure, I'd like to do that, but that's a bit impossible at this stage"!!

Last night as Roger shaved around his beard (yes, he has a beard and looks gorgeous - and I'm not biased) he was trying to put his shave cream on top of the cupboard. He can no longer reach up with his right hand and there he was creeping it up alongside the cupboard to the top. I couldn't help it, I just roared with laughter and started singing the old Play School song "Open shut them". One of the lines is "creep them (your hands), creep them....." Oh well, maybe I'm the only one that will get pleasure out of this!!

We have settled into our routine again and this past week has been good for us both. We've had a quiet weekend and are trying to gain strength for the week ahead. We've had lots of laughs, some good chats together and just basked in each others company. It's been great.

We are enjoying listened to our old vinyl records which bring back lots of happy memories for us both. I'm so glad we didn't throw them all out, but kept about 40 of them.

Thanks to those who leave comments - I love them!!

It's Thursday night. We are both feeling much better and are settling back into life in Perth and our routine. There have been a few changes. Rog now has help each weekday morning to shower, dress and have breakfast - 2 hours each morning. I don't think he's very impressed by this really, but it is a huge help for me and I am feeling better for it.

We have both been getting some good nights sleep. Rog has been coming to bed earlier and this is helpful for me.

Another machine has entered the house, this time a 'cough assist' machine. Roger, with my help, goes on this machine morning and night. I think they are worried about what might still be on his lungs after his sickness in Melbourne.

I am now looking a tiles for the bathroom. I went to 5 places today!! Very tiring. Also looked at bathroom cabinets. In my spare time I had my hair cut!

I received a phone call from Bethesda Hospital today about respite for Roger. There isn't a bed available at the moment. I am sure it will work out just at the right time. More paperwork to do.

Roger is applying to get a Taxi subsidy, but this will mean another trip to the Doctor for more paperwork to be filled out.

Roger continues to work on his Dignity Therapy and the story of his life. I haven't got too involved in this but look forward to reading the finished manuscript which will be ready soon.

It's Monday night and we've just come home from the finals soccer game played by our Barnies Church team. They did a great job but did not win. It was fun cheering them on.

I had put together some red salmon patties before we left and have just cooked them and I can't believe Roger is on his third one! Needless to say they are a great hit and easy for him to eat! They certainly are pretty yummy.

We both continue to struggle along. Saturday night was the first night in several months that I have had an undisturbed nights sleep and it has helped a little. I would just like a few more like this to get some of my strength back.

Today we both went into work. Roger did extremely well with his scanning and I must say it does take his mind off himself and the office atmosphere is so lovely and very supportive. I enjoyed being back and everyone just let me settle back in without demanding too much of me!

It was difficult this morning as the phone started ringing around 8.45 and I was trying to get myself and Roger ready to face the day. Three phone calls in 1/2 hour is too much for me to cope with. We were expecting help for Roger, but they didn't arrive. Not sure what went wrong.

Tomorrow morning Trevor is coming to look at the bathroom again. It looks like the renovation will take place SOON. But I won't hold my breath. And goodness knows how we are going to cope without a bathroom for a week or two! I am so tired I don't know how I am going to cope with all that is going on.

I did get to the beach yesterday with Irene. We weren't very impressed with the rough seas, so decided to walk along the beach instead then sit on our towels and chat. The waves calmed down and we looked at each other and said "why not!!". So, I had my first swim after winter on 11 September. Not bad eh?

Tomorrow is the first anniversary of our arrival in Perth. So much has happened in 12 months and our lives have changed drastically.

Back in Perth

We arrived safely back in Perth Tuesday afternoon 6 September. We had a good flight home with Qantas and the staff went out of their way to help us. This really helped us both with the stress of flying back to Perth. As you can imagine, our emotions were rather high having to say goodbye to our beloved family and our beautiful little grandsons Nathan and Edward. Too much for us to bear really, but somehow we managed.

I was feeling most unwell and have now come down with a cold. I feel tired and cast down and I know I need some time on my own to recover my strength for the next part of this difficult Motor Neurone Disease journey that my beloved Roger is on.

Roger has lost 4 kg's in the past 3 weeks, is not eating nearly enough and I am beside myself to know how to handle the coming weeks.

Roger now needs help in getting into bed, he finds it difficult to turn in bed, he is struggling with reflux due to weak muscles and walking is now a big problem.

Our darling 'angels' Cherylyn and Karlene have helped to put in place some help for me. Someone will come each day next week to shower Roger and help with breakfast. This will give me some time for myself. Also they are going to try and get him into Respite for a few days or a week. As much as we both don't want this, if I am to be of any use in the coming hard weeks, I need this time to be able to regroup and to feel as normal as possible (a bit of an understatement with what we are going through).

I need to try and put into place help from friends that would be willing to take Roger out in the wheelchair for a couple of hours just to get him out in the fresh air and enjoying the beautiful sunshine we are having in Perth at the moment (temps between 20 and 25C during the day at the moment). Roger is quiet, so he doesn't need the constant chatting of people, but just the companionship.

We're doing it tough and I can't even bear to think about what is around the corner for us.

Again, I do have to thank you for your love and prayers for us both. We really are blessed to have an amazing family and so many wonderful, wonderful friends who love and care for us.

In Melbourne

Roger with Glenda, Nathan and Edward

We arrived in Melbourne on Tuesday night 16 August and our dear son Tim picked us up from the Airport and drove us to Glenda and Tom's to pick up the key to where we were staying. This gave us a chance to have a 'peek' at our precious little Edward and Nathan before we headed to our accommodation just down the road.

Roger was at the beginning of a cold when we left Melbourne and it progressively got worse. Eventually we went to the Dr and he put him on a huge dose of antibiotics to knock the cold on the head. We had many sleepless nights as once he hit the pillow he would begin to cough. Jocelyn, Irene and I gave him chest therapy (lying on his tummy and patting all over the back). Back to the Dr on Thursday to make sure Roger's chest had cleared. Then a reaction to one of the tablets he was taking and he woke up last Monday morning with the most angry rash all over his body so back to the Dr and more medication.

After all these tablets his bowels decided they wanted no more of it!! His last bowel movement was last Saturday. After phone calls back and forth to our Care Advisers in Perth I purchased some medication to help him along, but whatever we used still wouldn't move anything. He stopped eating because he couldn't use his bowels and felt so uncomfortable.

On Friday night 2 September Tom, Mariska and Andrew took him to Aussie Rules Football to see his beloved Cats (Geelong) play against the team on top of the ladder (not worth mentioning their name!!!). Geelong won by 96 points and Roger came home over the moon but very uncomfortable. I gave him some medication to drink but after 2 hours he still had not used his bowels and could not pass urine and he was in such a state, as was I. I felt very unwell and just beside myself and knew I couldn't drive him to the Emergency outpatients hospital. I rang for an Ambulance, which came about 3/4 hr later and they took him off to hospital. I cried myself to sleep, feeling so alone and lonely.

My mobile woke me up at 9.45am when Roger rang to say he was feeling a little more comfortable and that a Dr would visit again in about 1 hour. I picked him up around 12.30pm and brought him home, but not confident I should have been doing this as he had not eaten for 24 hours and was weak and still in pain. He had an explosion soon after arriving home and I just lost the plot.

Jocelyn came over and Cheryl to help out. Cheryl took me over to Glenda and Tom's so that I could get some rest (which I have done) and Cheryl is staying with Roger until I get back. It is now 8.40pm and I am hoping Roger and I will be able to get a good night's uneventful sleep.

Nathan and Edward are being Dedicated at Church tomorrow and we would both like to be there for this happy event. It is also Father's Day and the kids want to spend time with Roger.

Thanks everyone for your lovely messages, love and prayers for us both. All that has happened will really set Roger back. I will try and keep you up to date. We fly back to Perth on Tuesday 6 September.

Roger and Pepper

Sunday 7 August 2011

It was a very early start for Roger this morning. I made sure I was organized so that things ran smoothly e.g clothes to wear, what to eat for breakfast, message, etc. Didn't get a chance to walk Pepper, but he will survive for one day!

We left home at 8.10am. Just as well it is only a 5 minute drive to the Church. Bit nippy this morning as well!!! (my lovely coat bought on a trip to Toronto, Canada comes in handy for Church). Roger spoke very well at both services - 8.30 and 10.15am. It was lovely to see Roger's sense of humour coming out. He was very tired afterwards as you can imagine. He received lots of encouraging comments.

I am so pleased he has had this opportunity to speak in Church again. I don't think he will be able to do it again, with his speech becoming less and less clear.

Unrelenting MND

Pressing On !

Roger has had 3 sessions with Brenda to tell his story and it has all gone very well. I am feeling very excited thinking about how Brenda is going to present this to us. Roger said there are a few surprises to look forward to. I am a little disappointed that his voice has been taped and his speech is not lovely and clear like it used to be. Roger will have another session next week. It is all very thorough.

I've had a terrible week and a half. I haven't felt really well, I seem to be forever crying, I am stressed, sometimes I feel very alone and trying to cope is way out of control. This is just not like me at all and I know I am probably going to get worse.

I visited a Naturopath on Tuesday and he was very helpful. He has given me some cacky herbs to take and he told me to buy some liquid fish oil to take. He has given me some very good advice and I just have to try and put it into practise.

I hate what is happening to us as a couple. It is even hard for us to have a nice conversation because Roger is so unclear when he talks. But I know I must be thankful for such a happy 35 years of marriage to a darling, darling man.

Roger is currently preparing his message to speak at our Church this coming Sunday 7 August. He will speak from Genesis 11 on 'The Tower of Babel'. I can't say I am too happy about this as I think it is too much for him, but try and tell Roger that!! Also he has been asked to speak at both services - 8.30 and 10.15am!! So, get praying for Roger please everyone!!

DIGNITY THERAPY / MND STUDY

Today we had a visit from Brenda who is a PhD Research Student. Dignity Therapy has been used with Cancer patients and now they are trialing it on MND patients. Roger was asked to participate in the study and agreed. He will be answering lots of questions and putting together some of his life story. Our children have encouraged Rog to write down some of his story, but he hasn't, so this is a wonderful opportunity to get something down in writing. It promises to be a very interesting time, but also a painful time as questions are asked and answered and memories recalled.

The next visit from Brenda will be on Friday. I don't have to be here with Roger. I think it will be good for him to be on his own with Brenda. She is a lovely lady and very gentle. Just the person to be doing this sort of things.

Some of the questions asked:

Tell me a little about your life history; particularly the parts that you either remember most or think are the most important? When did you feel most alive?

Are there specific things that you would want your family to know about you, and are there particular things you would want them to remember?

I'll keep you posted on how it all goes.

MND PAMPER DAY

Today Roger and I went to the MND Conference Centre to have some pampering. This is a special day that MND holds a few times a year to treat people with MND and their carers to some TLC. We had a great time and it was good to meet other people in our situation.

We are very thankful for the wonderful volunteers and MND Care Advisers who give of their time to put on this special day. They do an amazing job and keep on eye on everyone. WELL DONE we both say.

Yesterday Roger came into work and did his usual few hours of scanning and then entertained 3 lovely children - Thomas, Lydia and Daniel - to a game of Zug um Zug in the afternoon. Roger thoroughly enjoyed their company and so did Pepper!! I even managed to make some 'Honey Joys' for them to eat before I went to work.

ONE DAY AT A TIME

Yes, it has been many months since I have last blogged and I am hoping to change this in the coming days.

Roger and I are on a very difficult journey. Sometimes we feel life really sucks and has dealt us a very tough blow! Why? We can't help asking ourselves this question. But life goes on and we must live it as best we can, making the most of our situation and loving each other and caring for each other 'till death do us part'.

When I think of how Roger was in January (my last post) and how he is now, it just breaks my heart. He can no longer walk with ease and each time he does walk (with his dictus splint on his left leg to help with foot drop) I just about freak out that he will stumble and fall. If he does, it will be very hard for me to pick him up from the floor. He now weights 69kg (he was 80kg before he was struck down with MND).

His speech is not clear. Sometimes it is better than at other times. Most people finding it difficult to understand what he is saying. He has always had a lovely speaking voice and a beautiful singing voice. Singing makes him cry these days (as he sings in Church). What must be going around in his head. I don't even want to go there.

Each morning I help him to get dressed. We have a shower stool waiting to be used, but he's not quite ready for it yet. But it is here when the time comes.

He is getting used to using a VPAP machine to help with his breathing at night. He doesn't need it really at the moment, but the Specialist wanted him to get used to it while he is not too stressed about his breathing. He has a regular respiratory test and he is about 50%. The next test is on my Birthday 10 August! Won't be fun to have to go to the hospital on my Birthday, but it couldn't be arranged at another time and it needs to be before we fly to Melbourne on 16 August. Flying could be a problem for Roger.

On Tuesday Roger became quite upset when he was shaving. He couldn't finish and it really upset him. He has been growing a nice beard this past month and it looks very smart. But he still likes to keep it trimmed under his neck and on his cheeks. Today he managed to do it okay himself but I put on the cream he likes.

So, how is his body coping. He has lost complete use of his left arm/hand. It just hangs at his side. He has a sling, but it is not comfortable around his neck. His left leg has almost wasted away and I am amazed he is still able to walk. He right arm is weakening but his hand is okay. this is the opposite to what happened with his left arm. It was his fingers that really went first and then his arm. What a sinister disease this is. His tongue has become very thick and the muscles in his lips have quite gone. This means he often dribbles and eating food is slow and difficult and can often lead to tears.

At last he has agreed to have a feeding tube inserted. We are waiting to hear from our Neurologist when this will happen. Hopefully before we go to Melbourne on 16 August.

We try and make the most of each day, be kind to each other, hug each other each day and most of all we try and laugh as much as possible (to balance out the crying!!). We know we have much to be thankful for, with a wonderful marriage of 35 years and many, many happy times together and wonderful places visited. Lots of lovely friends who love us, all over the world and a beautiful family.

Yes, we do count our blessings and thank our Heavenly Father for each other and all he has given us.

Tomorrow is another new day..........

Reflections

Roger and I arrived back to our little home on Tuesday 11 January after visiting with our family and a few friends in Melbourne. We had a wonderful time but were both quite tired for a few days after arriving home.

This morning we went to our Church where our new minister was speaking. He spoke on the temptation of Jesus and summed up in this way:

1. Temptation is not sin
2. Beginnings are often testing
3. God reserves the right to narrow our options
4. When tempted, ask Jesus for help

One of the last thoughts really reached into my heart and I claim this for myself:

If God takes me (you) to a difficult place, TRUST HIM

How blessed we are to have a loving Heavenly Father who knows all about us and is here each day to guide, help and strengthen us. Wow!

Here is Roger in the Melbourne Botanical Gardens with
sister Elizabeth and brother David

Roger and I enjoying a sit down in the Cloudhill Gardens in Olinda in the Dandenong Ranges

My darling is doing amazingly well. In fact, from the outside HE LOOKS GREAT. We are taking one day at a time and trying to do positive and happy things to fill our days.

We were sent the book The Bells by Richard Marvel (from a friend in Basel) and Roger has begun reading it to me. We lie on the bed for about 1 hour a day and I am truly treasuring this time, and especially being read to as Roger's speech deteriorates. We are thankful to have this time together now, knowing what is going to happen to Roger's body in the near future.

Yes, we are both very happy.