Blog 28- Walking through the ancient forest

Blog 28- Walking through the ancient forest

I have just got back from South Wales … We stayed in a former tavern called George House in Solva which is brilliant cottage with so many antiques and interesting paintings, it is so old but the owners have made it so easy with updated appliances. We had a wonderful view of the sea and an olive tree in the back garden. I slept on the lawn and it felt like I was abroad. Solva is a brilliant village a sandy beach,harbour, good places to eat and galleries.

We had a good day out before we left, we visited the town of Narbeth first, it full of quirky shops and galleries. Then we went onto Tenby, I loved this town we went as a family in 1993 when the boys were toddlers and we were so in love, I was so happy then, I didn’t realise that the years to come would be so hard. If you are happy be content and relish the moment.

We went home via the little sandy cove where my fathers ashes were scattered, Cwm y Eglwys, it was a cold day and the wind is bracing. We went onto to Borth beach next, we went a few years ago and walked the coast with Ruth and Joe when I was well 2010, I realise I have memories before and after my diagnosis. I really wanted to return to see the the remains of the ancient forest which was uncovered during the storms in February.. Ruth was a bit reluctant that I could cope with the walk along the beach as the wind was so forceful and it took my breath away. I was so determined, I try to overcome obstacles and if I say ‘no’ and I can’t do the things I want, I might lie down and give in to MND. She supported me and I am so glad she did as I couldn’t go on my own as I had to grasp her arm to stop falling. On the beach we spotted massive trunks from oak trees and they were birch, pine and alder. I so wanted to feel them and walk around the forest which was here 5,000 years ago. We walked though puddles and we overcome the pebbles and fought the cold wind and I did it !! I made it to the forest and felt the trees which was so soft, it was like stroking an animal. It was so amazing!!!!!

On our way back I became exhausted the wind was so strong, and I couldn’t lift my foot up enough to negotiate the pebbles so I fell on my hands luckily I didn’t have a stick, I couldn’t get up as I was giggling so much… Ruth was trying to pull me up but we both laughing so we had a tussle with the pebbles, sand and the wind. I eventually got up and we had a load of driftwood and stones. They pebbles were perfect for painting as they were flat and had a level surface. So if you want a painted stone it will come from Borth and good memories.

After Borth we went home via the Cambrian mountains, the pine forests were swaddled by the light mist and the lambs were frolicking in the beams of sunshine. It was a significant journey I wanted to catch everything in my memory bank as I looked at the different structures of the trees without the leaves and highlighted by the sunset? It was such a beautiful sight as we meandered on the small lanes and went through the small towns on the border of Wales and Cheshire. We arrived at home to a have a hug with my sister Sue and niece, Nicola, the house was full of candles and scented freesias.

So I am still living with MND and I have laughs and sadness but I am continuing experiencing life. I am still deteriorating as I get closer to the end stage. I fear about how I will die. Even the people in death row will know how they will die! I wish I had the choice of Dignitas in UK. I might not take the opportunity but it will comfort me now if I had the option. I fear most of being in pain and not be able to communicate without the ability to type. I fear of dying of suffocation, the inability of getting my breath. Tomorrow at 9am on BBC Radio 4 , Sir Chris Woodhead a former school inspector who has MND , is to be interviewed about having the right to die without suffering.

I need to give you a message about the Midnight Walk for St Anne’s Hospice which have been very helpful to me, they are the best and they help so many people like me and like you. This year we are meeting on May 9th in the evening to make our star hats and plan our team. So if you want to be part of the team either reply to the blog or reply to Facebook Lindsay Rigby and I will give you the details of the planning meeting or if you want to just come on the walk we will make you a hat !!!

If you want to see the blog last time read the blog it’s Day 89 – A wonderful team.
Happy Easter , have fun and spend time with your loved ones xx

Blog 27 – Capture the moments

Blog 27 - Capture the moments

The day outside is magical I feel that spring has that intensity of light,sharp and vivid. We have sunshine every day, Solva is a village just out of St David’s , I think the artists have moved into Pembrokeshire as Cornwall is saturated . There is galleries and potteries scattered everywhere and I learnt a new word in Welsh that the word ‘Oriel’ means gallery.
We went to watch the sunset on Whitesands beach on Sunday with cirrocumulus clouds (herringbone), they are formed from ice crystals which usually means rain but at sunset they reflect the couloirs and they are outstanding when you are watching the sunset when they are present.

On Monday I was very tired so I climbed into the wheelchair again and Ruth pushed me around St David’s cathedral, the topside as I can still leave the wheelchair and walk around but can’t walk for very long as my good leg is wasting also and I do a little dance to maintain my balance !!! It is very relaxed in this cottage, the wood inside looks like it s from a ship .. It’s very cosy at night with the wood burner and candles and love spending with Joe, Alex and Ava.

On Tuesday Joe pushed me along a rough path to the beach, it was a white knuckle ride down but coming up was pleasant as I noticed the spring flowers, shiny yellow celandines, primroses , gorse and purple deadly nightshade. I try to practise Mindfulness in a loose sense, when I saw the celandines I recognised them as I have seen them many many times, but I was thinking I haven’t seen them from a wheelchair and I haven’t seen them in Pembrokeshire. When I look Ava she is changing every day. Everything is fresh and new, everyday brings moments that we can’t have again. If you are bored in work or weary about the chores, think that it is a new moment and it never will come again. Little moments you have, is impermanent, you are impermanent and I am impermanent. So appreciate every moment focus on the changes of your senses, the perceptions you have when you are in the moment. As I have limited moments I try to take in everything, I guess I want to capture those moments on my camera but I can’t relive the movement. If you are feeling low, like I do so often about my disabilities time is moving and I can’t bring the moments back and if I am low, it is a gloomy frame and it’s such a waste.

So when are reading this stop and relish the moment , look at the sky,feel the temperatures, what can you smell? Look at your view and glance at something you value maybe it is a friend or flowers or maybe you are eating or drinking savour the state while you are reading this,appreciate your day for a few moments If anyone wants a stone to reply to this blog and include your address or send me a message on Facebook and I will send you a stone to any country in the world !!

Blog 26 – Flowers to fill the house !!,

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imageBlog 26 - Flowers to fill the house !!,

Blog 26
I have made it to Spring ! The branches of the cherry blossom tree are sprouting leaves from the tight buds. I have spent a few days lying in the garden and listening to the song birds, babbling water and the tinkle of wind chimes with the sun on my face while I read my book. Thanks Paul !!! I didn’t imagine I would see another spring this time last year, Its over three years when I spotted the initial symptoms and according to the MND Association with bulbar onset life expectancy is 6 months to 3 years so I am on borrowed time.

My life is going slower as I try to contact with family and friends and the very special Ava. I had the best Mother’s Day ever !! Alex whooped the boys and Ruth to give me amazing day. The house was filled with scented flowers, candles and balloons … I was bewildered, Sam came from London to spend the weekend with me and that’s very special to me to have him around, and Joe lighted 50 candles around the flowers and Ruth and Alex made food while I had Ava in my arms. When I think about that weekend I still get emotional it was so special. On the Sunday we went to Castlefield, when the boys were young we played pwolf on the ‘trip trap’ bridges,I used the wheelchair as I can’t walk far now, it was odd as the boys pushed me instead of me pushing them in their prams.

My sister Ros drove me out to the Cheshire countryside in the sun and spotted Arley Hall and gardens. So Louise accompanied me to look around the gardens from my wheelchair again. I acknowledge that I will be using wheelchairs more and more, another high wall of contempt that I have accept. Like Wordsworth I had a heavy heart after reading the information about cognitive changes in MND in the morning, but when I got there the daffodils gave me joy. So many species cream, bright yellow, lemon and my favourite was a deep cream petals and a rose pink trumpet and the poem they were dancing in the wind. The narcissi were fragile and fragrant, the camellia were striking colours of pinks and scarlet, magnolia trees in bloom like birds preparing to fly. Hellebores subtle greens and deep purple, opening their petals like cups for fairies.

I realise that I have to have rests during the day and rest my head as my neck is weaker and the days go so quickly now and I have so much to do and I can’t undertake my plans for the day .. … I am in sorting mode now and try to clear my affairs and prepare the future. When I was working we did that exercise to determine team roles , I was a creative instigator and a finisher … That is hard as I am still planning activities and I am finishing off my life. I must stop instigating new tasks but there is so much do in life !!! I realise I have so many projects half finished , my phd write up , sorting out photographs, decorating a room for Sam , maintaining the garden and house, clearing out my clothes and writing to friends and family.
I am just having a rest while I am packing to go to Pembrokeshire for the week with Ruth , Alex and Joe and the precious Ava. Joe is driving down in his new car … I am very nervous about it but he is very sensible. I look forward to nestling in the cottage near Solva which has the sea views at the end of the garden !!

Blog 25 – A bundle of joy

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It is while since I wrote a blog, the days have been so full and so I had so much to do despite that my energy is dissipating. The most important event brought me a bundle of joy which is embodied as my first granddaughter. Ava Lily joined us on earth on March 12th, she is so treasured which brought me pure happiness. She has brought rays of sunshine to my grey days. When I hold her in my arms I send her my loving wishes for a lifetime, she dissolves my sadness of the bittersweet dilemma of loving her too much.

When you read this in years to come Ava, I want to you to know when you were born I had immense love for you, my heart went out to you, I can’t describe the feeling I had for you! When you were here in our family house everybody was just captivated by you, as you were the treasure they have been searching for. You were cherished by your parents, your mum couldn’t separate from you, she is so in touch with your needs, you are so central to her and she gazes at you with pure love. Your dad looks at you as though he can’t get enough of you, he cherishes you, he says with a bright smile that you have made his life complete.So you have filled your family with pride. I am sorry I will not see you grow up but I am assured that you will be loved forever.

I have listened to comments about Ava but the most important snippet was from my son Sam, when he said that new born babies are pure and can be taught anything. Parents and friends to our children are responsible for their attitudes and morals. They learn this by noticing the people who they trust and respect. I am so proud of my sons as if they were stripped of their possessions I know they have wealth in the morality and integrity. So I am assured that you will be brought up with candor and a sense of justice that is the most important trait. We place too much emphasis on knowledge rather then virtues.we spend so much time as a child learning for exams to get a decent living but we don’t respect our elderly, or care about our world and poverty enough.

MND is has robbed me of being able to sing my family song ‘Summertime’to her, I can’t kiss her head and I can’t climb the stairs to change her nappy or walk around with her, I can’t speak to her parents as I can’t communicate easily with them and support them as I would have. Although I am here and I notice the little things and I know everyone that meets her will support her. So Ava I have met you and you know that I love you and maybe you will hear that as you watch the stars in the sky and if you have sisters and brothers tell the same,

Before I close this blog I want to thank all my friends who supported me this week as I was challenged with the MND and had to be hospitalised for a few days … Especially my boys Sam and Joe, and Ruth, Louise and Nicola who were at my side throughout. Also the well wishes and flowers which made me feel loved . These gestures make the road of MND a little softer. So forgive me for not communicating last week but I am on track now and feel a little better.i will get back to being independent again and fighting the MND again …

Blog 24 – Accept the wheel of change

Blog 24 - Accept  the wheel of change

When I reflect of past events I realise that my life is changing rapidly. Last year I was planning a holiday to Croatia, I hadn’t started my blog as I was getting my head around my diagnosis, I could still eat and drink and I was independently meeting my sons in York as I could walk without falling!

Time rushes on like the last few days of holidays and I feel we must keep abreast of the changes in life. I recall I was very resistance to using computerised case notes at work, using DVDs instead of cassettes, microwaves and ‘smart’ mobile phones. When I have challenged my reluctance to run with the changing world, I feIt that I was running in a team instead putting my hands on my hips and being stubborn.

As I get older I need to realise also that it’s not only technology that is changing quickly but my relationship with my family and friends are also changing. I need to be cognisant that I need to change and respect my sons for the steps they taking in the earth instead of telling them how to walk and where they should go. This week a generous woman gave me a reference to a poem. I want to share this bit of wisdom to you as it helped me letting my sons become men and I realised that they don’t need me now and the precious months I have I can walk beside them as I realise that our relationship has changed. The poem is by Khalil Gibran as he explains your children are not yours, you don’t own them, you are like the bows and they are the arrows . You make them strong and take a place to where they can shoot and you teach them how to aim straight but you cannot determine where the arrows hit the ground (http://www.katsandogz.com/onchildren.html) .

I have to realised that relationships change and maybe they want to support me now and I have finally accepted as their arrows have the hit the earth and I so proud of them where they are in their earth, they are aware of where they are in life and recognise other people in the world and they are gentle but have attitudes that echo their dad, I know Tim would have been so proud of them like me.

I realise I resist changes in changes in body now, I don’t want to accept the changes in my body but if I resist them I get frustrated so I need to accept what comes along. Sometimes I want to stay still, I want to be stable for a while, I don’t want more symptoms, I don’t want deteriorate but I need to accept that everyone’s body goes into deteriorate mode, your hair, skin, brain, eyes and bones all start to deteriorate at 30 yrs. We must concede to our bodies and rejoice whatever age you are. My body is ageing too soon. my hands look like a 90 years old. ageing for me is like my life is on fast forward mode. If I don’t concede to this deteriorating disease and I become stubborn and will become angry and frustrated so I try cherish the my limited independence. When I climb the stairs at night I relish that I can still put myself to bed. So applaud your body as well as your day, that you can still run, eat apples, see the sunset and hear your friend stories and walk up a mountain, ride a bike and if you cannot do these things accept what you can do and keep it going as long as you can.

If you are reading this and you have MND, life is concentrated so cherish the day that you can do things and don’t get caught up with the future. It will come so soon and when it comes just accept it and focus on what you can do and accept what you can’t do anymore.

Blog 23 – Slow down and focus on the light ,

 Blog 23 - Slow down and focus on the light ,

Over the past few weeks I have recognised when I have dark thoughts I try to turn them around. Today I was filling my syringes with water to put down my monster tube …I have to do this four times a day and fill about 8 syringes each time and I had a thought ‘this is so laborious why can’t I just eat food again” As the thought came to me I recognised that was a negative perspective so I tried to turn it around and thought I have so much time with my sons because of my tube, reframing makes the task easier. I have adopted a mantra to balance my mind as my body becomes weaker.

“Focus on the light in the darkness instead of contemplating the gloom of MND “

In our lives there is so much brightness it maybe transient or obscure but there is so many moments to treasure. While I reflect on my week, I could focus on the fall I had and the cuts and bruises but I try to think of the wonderful man who scooped me up and put me on my feet. I could have focused on my inability to travel to appointments but I focus on the kindness of people like Ali my MND friend and her daughter Emily who met me in Sheffield and accompanied me throughout the day and put me on the train to Manchester and Chris, Lynn and Ian who have been generous with their time.

I could moan about lack of circulation in my feet and hands but Instead I focus on the goodwill of Chris who brought me a electric blanket and Sue who brought me a feet warmer and presents of warming socks. I could moan about my inability to share meals but instead I am grateful for Ruth’s assistance who supports me in still cooking for my family

I could moan about my inability to speak when I go the garage or the vet, but Darren at Bridge garage has taken my car twice, repaired and delivered it and refuses payment ! I have had so many good connections and support with people who don’t know me at all. I think if we concentrate on the bad habits and downfalls of people, the grim side is highlighted.Most people have a downside but I liked to look at the whole person. I try to disregard the bad elements in people instead look for the beauty. I still need to practice this but I feel I am on the right road of overlooking people’s faults and instead look out for the qualities. I believe we need to do that for ourselves too. We can compare ourselves with others and we end up losing our confidence and dignity. I need to work on myself, I regard this MND as it’s captured my whole body and mind but it hasn’t it is just my muscle groups. I am more the my muscles and I must trust that others can see me beneath my saggy face and my limp.

I think I am noticing the people because I am slowed down. When I was well I used to rush through life and everything I saw was fuzzy like you are on a fast train but now I have slowed down and my slowness means I can pay attention to to the beauty of the world and people in it. I used to pride myself in multitasking but when you do that, you lose on the beauty of the world and the people who you meet.

I suggest you pick a day in the week and slow down, don’t rush and take everything, the smells, texture, sounds, taste and sight, use your five senses but in detail. Maybe take the bus instead getting in the car one day or walk.Open yourself up to the world and to end the chosen day reflect about how much you have seen and give your loved one a longer hug and sense the closeness.

Living ŵith MND . Blog 22 – Letting go

Living ŵith MND . Blog 22  - Letting go

Sometimes I believe that my body hasn’t changed much, the symptoms are slow and insidious I think I have months and months of life left to live.
Sometimes I believe my symptoms are progressing quickly as I look back over the weeks and realise I have lost so much. MND is so variable and you haven’t got a time space to identify.
Sometimes I believe I have a double edged sword to try to plan for increasing symptoms and the consequences of impending dependence on friends and family but I also try and live in the day as independently and make the most of every hour…. a hard task.

I was anticipating I would die before my hands lose dexterity but sadly my hands are now withered, my legs are failing to bear my body and my neck is failing to bear my head.
I was anticipating I would get everything in order before my time runs out, so I am reminiscing as I sort my photographs of people and places that have touched me, my family growing up, celebrations I have experienced, and those I miss dearly who have died before me.
I was anticipating I would have time to clear out my possessions, keepsakes and momentos. I imagine my family and friends in the future are sifting through my possessions as I did for my parents and my beloved Tim. So I slip into their shoes and I become brutal about them as they don’t mean anything to others so I must let them go.

I am in a place whereby I can still sort out my affairs, planning my funeral, fixing the house, throwing things out. It is important to me that I don’t leave a mess. I recall my dad did this when he knew he was going to die he sorted everyone out and make arrangement to see his loved ones before he died.

I am in a place where I am content and not sad in this frame of mind it’s like clearing my desk before summer holidays. When I have done this I can relax and I can walk down my road to my last journey free of baggage , like the Gormley statues on Crosby beach empty hands towards the sunset.

I am in place where I can let things to go so if you are close to me and you receive a parcel or an envelope it’s a gift of respect, fondness and affection or maybe something I borrowed and haven’t given you back !!!!

Blog 21 – The Scales of Dependence

Blog  21 -  The. Scales of Dependence

This blog is dedicated to professional students who might encounter patients with MND or a similar terminal illness. The idea came to me from Chris Kenny as she informed me that she had put the blog on the learning interface for occupational therapist students and also from Emma who responded to my last blog about changing her practice. When I made my first steps as an occupational therapist I thought that knowledge on conditions was adequate. Thankfully I realised that you need to put on the shoes of empathy and take steps side by side with the patient. As a lecturer I used to teach communication skills as I recognised that it is the most essential skill.

As I am living with MND , I have noticed that most professionals are cognisant with my loss of speech but some have serious deficiencies in understanding loss of speech and empathising with a terminal illness. Unfortunately I have some distressing responses to my symptoms:

“You might have MND but it’s not that bad as an illness ! “
” You can try these thickeners to help you swallow liquids but I haven’t tried them as I think they are like wallpaper paste “
” I don’t do technology so I can’t advise you about you about a speech programme for your IPad why don’t you google on the Internet”

I have had professional try and take my iPad and type out their response to my questions as they think I am deaf. I have had professionals shout at me and using simple language as they think as I can’t speak I have a learning difficultly. Many professional don’t even introduce themselves and explain what their role is in the care plan. I think professional who are involved in your care need to ask how they should address you and tell you how they want to be addressed. Generally they should ask if the patient if they have any problems with communication. As if they do you can’t get from the first base with them as they could be hard of hearing, lack of concentration or visual problems.

Moving on from communication I would like to highlight the assessment of problems and needs. As an OT I think the problems should be interpreted to needs, but you cannot presume that everyone solutions to problems are the same. I am so tuned into aids and adaptations around the house or using mobility aids in the community but when professional tell me what I need I reject them I am not ready for them. My life has changed so much as I used to run, cycle and walk up mountains, it’s a drastic change to sit in a wheelchair and be pushed. My former life was filled with compassion as I used care and nurture for family and friends and supporting my colleagues and treating my clients. I am not ready to turn the tables yet. I know when the balance is tipped in regards of the weighing scales of independence and dependence I don’t need people to tell me.

My haven is my house, for the past ten years I have filled it with love, enhanced every room one by one, designed and decorated for the rest of my life. I don’t want white plastic grab rails all over my house like a clinic or a hospital bed in my bedroom, a very viable stair lift up the stairs or a walk in shower instead of my lovely bath with candles. When you ask a patient don’t tell them what they need just offer the options and it’s up to the patient to choose when they are ready to accept them.

I think occupational therapists should take assessment of the patients activities and what is important to them. I have lost the active pursuits now so I want to hang onto the interests I can do independently like painting, cooking and baking so I can still nurture my family and friends. I acknowledge that they will be compromised too soon but I have appreciated neck support to let me paint for a little longer and some additional medication so I don’t dribble into my watercolours!

Maybe as I get more poorly I need to adapt my activities further so I have got an iPad art app to transfer my creative juices to an iPad which I can do while resting my head in a prone situation. If I am cooking I need to get someone to open bottles and packets before I cook or cook with someone to carry the heavy pans or stir the food.

Working with terminal ill is so important as the days left are so precious and family and friends can remember a pain free and dignified death rather than a lonely,painful and disturbing death. Everyone will die at some stage including you and we must start to think about creative ways to make dying a positive experience.

Blog 20 -Bulbar MND – Seize the day

Blog 20 -Bulbar MND  - Seize the day

Blog 20
I stated this blog in front of a blazing fire, the logs have left remarkable structures in the wood burner The wind was curling around the rafters and the sea has retreated in a pitch dark evening, I was in Silevrdale, The family have been all week and then Helen and old and dear friend stayed with me at the end of the week.I wanted to show them this beautiful place, it has been very bad weather but the house is very cosy. We are able to watch the sea rise beneath us and fall at sunset which makes layers and layers of beautiful reflective colours.Initially russet and ambers as the sun blushes through the tired day and it gives way to crimson and pinks in the sky as it becomes dark as the sun disappears beneath the horizon.

I am still living with MND …it’s over a year now when I my speech went complexity and I reflect all things I have done since I was officially diagnosed. I have travelled with family and friends all over Europe and the UK. I have been to Paris, New York, Croatia, Belgium, Turkey, France, Portugal and Switzerland . I have been to the outer Hebrides, the Highlands and Lowlands, Durham,Yorkshire,London, Wales, Hampshire and the Lake District. I have made the garden an oasis and sorted out a downstairs toilet. I have enjoyed Christmas and New Year with my family. I have met and got to know my sons girlfriends and been away with them and rejoiced in their celebrations. I have seen my grand daughter grow inside her wonderful mother. I have painted, read and written. I have shared my experiences with my blog who has reached people in over 80 countries over the world with over 30,000 visits. My family and friends have raised money in different ventures from walking, running, cycling and the awareness night where we hosted an evening film and an art exhibition and other fundraising activities.

When I reflect I have had awesome time with MND and I have really known that I am surrounded by a ‘circle of love’ as my MND friend Stuart used to say. I know I have struggled with my stomach tube insertion which was hard, cramps everywhere, spasms in my throat, choking, painful mouth and more recently neck and back pains but I have lived despite that. I have been subject to embarrassing dribbling and my face looks like I am 100 years as my muscles have sagged. My mind is so active as my body fails and the major thing for me is fatigue as I need to rest more frequently and for longer.

One of the most important things to me over this year is that I ignited my spiritual side, learning to meditate and controlling my thoughts when I have been desperate. I have mourned for myself and my family and still will but when I mediate my thoughts now and can see the road I need to travel with this MND clearly instead of wallowing in grief. I can see the perspective of others and have made friends with my hostile thoughts. I send loving kindness to others and myself instead. I feel I have made compassionate friends who have never known me as a speaking person. I think that is remarkable as people have taken time to sit beside me and get to know me with the typed work alone. The messages to my blog, sometime when I read them, I get overwhelmed by the humanity and warm hearted responses.

So those who have MND don’t get in a corner, live life while you can … Seize the day and make the most of it. I realise as my arm has been twitched very strong constantly for a week now, that my arm and hand muscles are going soon but I want to write so much to communicate while I can. I don’t know what lies in the future weeks or months but I am living for today and you should too irrespective of your woes and worries. You can have yesterday back and redo it. Make memories while you can whether you have MND or not !

Blog 19 – Another Celebration !

Blog 19 - Another Celebration !

Another cause for celebration, I am so excited to announce is the engagement of Sam and Alice, he proposed on New Years Day after midnight on the beach. I am so happy for them as I think they are so harmonious as a couple. Alice is creative, fun but also warmhearted and supportive of Sam. I can imagine them being a solid couple in the future and I am so pleased they have committed to each other. I can’t believe they have been together more than a year, it’s seems yesterday when they met each other. Sam told me about her when we walked around Sefton park in Liverpool. They are so in love and I wish them a long and cherished marriage.

The days still seem seem so short, as I have a shower and then rest,then feed and rest so it is about 11am when I able to present myself to the world. A few chores and sun seems to set but I notice the days are longer so it’s hopeful. I have been focusing on all types of music especially listening to classical music and I realise that I haven’t listened to enough music in my life. I have listened to Rachmaninov, Beethoven and Sibelius as my emotion weaves in and out of the chords. I recommend to explore music you wouldn’t have considered… Spotify is really handy as it takes you to obscure tracks and people you wouldn’t have heard of, as I type I am listening to Wynton Marsalis, some tracks I have never heard of.

In the past few weeks I have climbed a few rings of the ladder of MND. I have accepted a walking stick, the wheelchair is out of the shed but stored away. I have had one outing in it but I cannot relate to you how much I hate it. Last week the community Physiotherapist and Occupational Therapist came to visit me, they are so approachable and down to earth. I think many clinicians are too ‘professional’ as they make a distance from the patient especially doctors, why do doctors always use your first name but they expect you to respond with their surname, that sets a distance immediately. Anyway the community team two including the dietician are so human I feel very comfortable around them, they are there if I need them and they leave me when I am OK. They made me a foot splint for my dropped foot and neck support which helps me to keep my head upright when I am tired.

A busy weekend making cakes for birthdays, the boys were around and went to the cinema to see 12 years of Slavery, every scene is so considered. Michael Fassbinder is so versatile as he played a starving Bobby Sands, a professional sex maniac and a southern farmer all directed by the very talented Steve McQueen.

So today is a chill day as I rest my heavy head, I contemplate my session with the therapist at the hospice, he is good as it must be so very hard talking to somebody that can’t speak. I am struggling with my envy of those who will bear witness to the events that I will not be there for such as Sam and Alice’s wedding, the growing up of my grandchild, supporting them over the decisions of bringing up children. It’s so hard as I listen to my friends as they chat around the dining table and I can envisage what it will be like when I am not there, but it is reassuring that my friends will be there for them and I am so grateful for that.

This disease has been so long, longer than I thought, it is a year since I went to have my tube inserted and over 18 months since I had a good conversation with anybody and two years when I got the diagnosis. I found out that only 9% with my bulbar diagnosis live 5 years. I really hope I am not in the percentage. I love life but I think 5 years is too long to cope with this illness. I am still having some delights in life and ironically I am still making friends and strengthening existing friendships which is very important to me. I feel the glow of being loved and able to love others and I can tell them, I think I have been too reluctant to tell people what they mean to me before this disease, so tell the people you love and when you are talking to them give them a full focus and tell them they are special to you especially those close to you.

It is a beautiful day there is a chill in the air , the sky is blue and I want to witness the sun going down on and see the colourful reflections of the sky on the lake,the filigree patterns of the trees with marbled, vivid sunset as a background and savour those special moments.

I have been looking at the followers and viewing of my blog, I have made contact with Tara who has just been diagnosed with bulbar MND. I hope I can support her through the tortuous following months as she comes to terms with the diagnosis. I notice a viewer in Malta who views the blog regularly. If anybody wants to contact me I will reply and we can maybe start a Facebook page and support each other .