Blog 43 – When the sun goes down …..

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I am in Heysham with my sister Ros and her husband Alec, Paul and Pete I am watching the sunset over the water. The rays of the sun are gleaming like a road from the beach to the sun. There is dark, heavy clouds like MND as the sun goes down the fringes of the clouds light up like coals in a fire.I hope am alight when my body goes down! I love the light in late summer. I have a ruby red dahlia and the sun makes it glowing,incandescent hue. Thank you Molly and Mindi.

I have been ‘clearing my desk’ I realise I have too many objects, clothes,books and files from my life. I wish had done this years ago. Its bittersweet when I am chucking my memories in the black bin bags. Photographs of friends who have died or forgotten. Dissertations which I sweated and laboured for so many hours in the middle of night. Journal articles which is so specific …’family interventions with home treatment for psychosis’ , no one would read it now. Gifts from special friends or boyfriends who are tat to others. Clothes I can’t wear as I can’t do button and zips. DVD and Cd s which are online, technology has carried me on.

It’s so hard to clear my mess of my life as I can’t hold my head up and my knees are buckled and I fall if I don’t hold furniture. I am breathless and my heart is pounding to get sufficient oxygen. I get very tired now but I still living with MND, I went to a Thai temple in Lichfield last week with my friend Ken and my son Joe, to meet the monk who is chanting at my funeral. We talked via my iPad for over an hour, he told stories of the Buddha to my situation. He then chanted, he was so enchanting. He explained the funeral and blessed all of us, it was very important to me to meet him.

I am looking forward to go away in mid September with Ruth for her birthday beside the sea. Ruth is buying tickets for a Congolese orchestra in the Bridgewater Hall on September 11th … You should go, it’s brilliant !!! I want to go to Liverpool Biannual Art Festival and I want to go the WW wards at Dunham Massey. I have got a painting to frame and I have another picture to paint for Sam. I have rest days and listen to the radio while a doze and see Ava and the young ones go in and out. Soon the rest days rest will turn into normality every day. I have mentioned carers to the GP. I hoped I wouldn’t go down that road, I wished I would die before my hands are redundant … You use your hands for everything !!!! I have a clear mind and still stubborn and I can choose what I can accept.

Carry on with the ice bucket it’s raising thousands for MND research but before you do it talk about MND before you get drenched !!! Thank you for getting wet it makes a lot to me..you can see me and Ruth,Angie and Pete and lots of people who are joining in to make MND awareness on Facebook.

Blog 42 – A solitary tree

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I went to Richmond, Yorkshire, it’s so beautiful, crystal waterfalls, quaint shops with delicacy from Yorkshire and grassy ruins. We rented a cottage with a clear view of the Norman castle …the stone is yellow ochre and shines in the twilight. Joe and Alex took me to the dales, it was dressed with purple heather and rosebay willowherb. I saw a solitary tree, wind blown and defined and I engaged with this tree, sometimes I feel isolated as nobody knows my combat with MND.

We saw the returning waves of the sea on the east coast in the village of Runswick Bay, which was full of houses with red roofs and a wide sandy beach. We went to Newby Hall near Ripon I love that garden as it has a river through the gardens and it’s so exotic and it has a peace within it. It’s only 90 mins from Manchester and it’s child friendly, as they have boats and a large adventure playground and Zimbabwe sculptures. Sam brought me Downton Hall and we watched it together, it’s a good researched series as it incorporates the social history and it defines the gap between the social class. It was good to have a day with Sam and Joe we went to Saltaire, it’s was a sunny day with a breeze which make the trees bustle we went to the Salt Mill and viewed the Hockney and browsed art books while I smelled, spicy trumpets stargazers liliewhich was abundant every corner of the mill. I am overjoyed that have lived the past 18 months to see Sam get his exams, see him graduated and see him enjoy creative activities. He has been committed to his friends in Manchester and London and they are walking beside him. Joe is set up a business and renovated the studio and he has for confidence, he is a sincere partner, compassionate father and faithful friend.

I haven’t written for a while as I am struggling with MND. It’s take an hour to have a shower and another hour to feed my monster tube. I try to focus on the moment and keep my heart open to appreciate every day but I have been very unstable as my both legs are wasting, they are like poles with no muscle and my hands are like a claws when I flex my fingers they cramp. My consultant said I have weeks or months … That could be two weeks or 12 months !!!! MND is a sword of Damocles, it’s foreboding like a sword in a cover and it’s maybe come out and kill you anytime.
When I walk I get breathless but I can still enjoy the moments, the smells, the fresh air and by family and friends who visit who help with chores.

I need alone time too, to process my thoughts and meditate to rise my mood and reflect on the reality of my life. This illness is so long, while I was functional I managed the speech loss and inability of eating and drinking but my function is going down a dark , grim tunnel . I come out of the tunnel at occasions, we had a indulged evening with massage, nail varnish and henna and fragrant candles. I thought my friends enjoyed it but after I go down the tunnel and it’s deeper and deeper and soon I can’t come back into the air.

So appreciate the life on the surface before you go down the tunnel I am in. Smell and taste the food you eat, take the pleasure of swallowing comforting hot drinks and refreshing cold drinks. When I am a public cafe or restaurant I realise people don’t taste the food they just stuff their food into the mouth as I used to do. Observe the seasonal time notice the vegetables, fruit and trees. When you speak consider your words, speak positivity process your anger, and make people smile. When you exercise, pleasure yourself you can stretch your muscles when you walk and hold your head up and appreciate that you hold objects to look at the beauty.

Blog 39 – Find your river

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I went to a wedding last week, it was my special nephew, Andy and his beautiful partner Amber. Sometimes when couples get together I am sceptical but Andy and Amber are so matched.They are creative, ambitious but they have the feet on the earth. The wedding was wonderful Amber had a sincere and humorous vow and the gospel singers were brilliant. I only went to the ceremony but I came back with Ruth later. I got upset as I couldn’t eat with them and chat with my family and get to Ambers family too. When I went back later I changed my thought process and stood strong and got a grasp of myself, nobody wants a unhappy women at a wedding! When I saw Sam and Joe I was really pleased as they were relaxed, smiles on the face and enjoying the day. It was a memory bank so I danced with Sam and Joe and put on silly wigs and friends of Amber came to talk to me. After two hours I was exhausted so we went back and babysit for Ava .It was a wonderful and emotional day as I was saying goodbye to some of family. Went I went back I realised my MND is nearly in the final stage , as my breathing is laboured when I walk , I just need to walk to the end of the garden and I am exhausted, my heart pounds and my shoulder is painful now and my hands cramp up when I use them, perhaps it is the heat,

Love is a really rooted emotion and it’s binds another person to you …rings,weddings are superficial …the enchanted love and vows really matters. You can walk together on the river of life or can separate…..that reminds of a song I heard recently “Find the River “

http://www.youtube.com/watch?v=HBNfkj7Io78

This song,especially the lyrics focus is appreciate the river, It is the natural, wonderful and vibrant source of your life maybe you can go to the city and party and travel but when you come to the river it gives you contemplation, reflective thoughts and rest. It can be a reality or analogy. I am ‘ walking by the river mouth or estuary now and it is going to the sea and I will soon join the spirits of a mass consciousness, maybe Tim is there. My river is the Mersey as my hearts beats harder when I beside the Mersey. Maybe you will have pretty river maybe the Thames, Wye, Avon or The Ribble . You might be miles from me but the water will evidently comes to the sea. So appreciate the stream and the fresh crystal water and the tender plants like sedges and wild garlic or the mature river and the sturdy bridges and flow of the water or the estuary which makes marshes as the river is transforms to the sea and my moon is shining brightly.

Tell me where your heats beats harder … For me it’s the Mersey, the Caldrew River in Caldbeck, Glenuig,Scotland, The Atlas Mountains , the Pennines, Berlin , Harris , South Africa that’s is a few magical places ….. It’s a wonderful world we live in but we think we are by the brook and we have years to go ….maybe you need to you everyone will to go the sea, so walk the river and don’t meander too long .

Blog 40- Open the door to your mind

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I had a wonderful weekend living with MND ….. Ruth came around on Friday and we watched a film, cosy with candles and foot massage. I got up late and Pete texted me to go Liverpool to see the enormous puppets …….I was in a dilemma as I am so tired at the moment but I am living so I gave a deep sigh and I got ready .

It was easy journey but warm as the sun shined on us .. We sought a car park and I got into the wheelchair and Pete pushed me to James Street where the three puppets were assembled from different streets. We were waiting on the traffic island for about 90 mins but the marshals cleared the island!!!!! Pete pushed me across the street and met Frenchman from the company directed me to a prime place where the press accumulated. While we waited everybody was excited the children were jumping up and down, and the talk was animated and the friendly Liverpudlians were chatting with Pete to inform of the puppets last night.

The grandmother came in a wheelchair and she took a letter of prose from the dog the Frenchman read the details of World War II from a Liverpool perspective. The gestures and expressive was so real. I felt the grandmother was reading my countenance. The dog ears were propped up and his tongue went out and in.
When they went down the street they were enormous at a scale with the buildings . I was so excited and my smile was broad. I hate the wheelchair but it can take me to lovely things.

On Sunday we went to the jazz festival to see a choir, the last performance again I was at the front. It was lovely to be out and about. When I got home I was exhausted but Sam came home it was lovely to see him we just chilled out with Joe and Alex. Wonderful weekend but I paid for it !!!

When you have decided refuse things in life and you justify your choice and it sets in your mind. I have to change my mind when I am tired, my days are short so I need to relish every moment. I have to have courage and spend fun time with people I love. So when you decide and it’s firm look out of your door of your mind and see the world outside and be brave !!! Life is for living not to be timid and stay in your mind.

I am writing while the I am listening to the WW1 ceremony in Glasgow, so many died in young years, in love with girlfriends, respect for the parents, close comrades, loved siblings, new parents. Many people was missing and hope for them to come home and days and days the light of hope diminishes like a in coming tide but the tide turns and it withdraws like hope.

I think of Gaza, children have died who have no idea of politics, appalling deaths in hospitals, schools and refugee camps. It’s disgusting that the bombs are killing infants, children, teenagers and young mothers.. When was it acceptable to kill children in war ? I can’t understand the sorrow and anger when your child dies, I am fortunate that I haven’t witness the death of child. I know friends and family that have have buried their son and daughter … I light up a candle today for the parents who have lost their children and today I will give will give the thought to them and loving kindness.

Blog -38 – The warm wind of friendship

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I am in Dorset after a six hours journey, it was uncomfortable as I haven’t got a bottom! The first night we stayed in a yurt, it had a clear window in the roof, we had a view of the cloudy night, no stars unfortunately but the wood burner kept the atmosphere cosy. In the morning we had we changed to a Finnish wood chalet. We are situated in the middle of a field with a view of horses and sheep. The farm is busy …. they have Guinea fowl, a bad tempered, ugly turkey, randy cocks beside sublime hens and geese, they waddle around the farm like a illustration in a book with bright orange beaks and milky feathers and a peacock, he has a extravagant display, showy eyes of turquoise and emerald to the peahen.

The first day we went to Lyme Regis … Ruth pushed me along the promenade beside pebble beaches,sand beaches and a harbour, she learning to handle me in a wheelchair around the narrow lanes with art galleries and teashops.We sat in striped deck chairs for a while as I watched bathers, parents and grandparents with their children building sandcastles, families tucking into a picnic, couples holding hands as they brave the sea, groups of teenagers eating fish and chips.I felt I was ghost observing the living.

We went to Chisel Beach, a 18 mile spit of pebbles, I couldn’t reach the sea but I managed to walk on the beach. We sat on the small, shiny and smooth stones of very colour,. The warm breeze was cuddling our bodies. Ruth is so kind as she walks with me everywhere so I don’t fall, and she gives me choice about my decisions. It must hard for her as she eats alone, drinks alone, she can’t chat to me and I can’t help her to pack and tidy up the chalet. She is always there for me and she doesn’t complain.

When we have enough sun, we winded our way on drover’s narrow sunken lanes to the farm. As the sun was going down the brilliant light makes the green leaves intense. I love the end of the day, it feels relaxed, but we had a vibrant noise from the back of the car when we stopped we found the exhaust had fallen off. So the next day we had no car, we had a sedate day ,,,painting, watching a film and viewing the scenic view. Ruth went out but she brought me a posy of red campion, bindweed and vetch. Sadly I can’t read as the print in my books, is fuzzy, that’s the side effects of the medication, eyelids are weak I struggle to blink and when I close my eyes I really have to focus to open them. I didn’t know MND would affect eyes but it can affect every voluntary muscle in the body.

Lord Falconer’s Assisted Dying Bill will be debated and maybe voted tomorrow. A potential change in the law for terminally ill patients. If the bill is implemented , people like me would have a choice of when they want to die. It would mean I don’t need to struggle with loss of dignity.. I have no speech, my hands are getting weak and have a battle to walk and dress ….I will be soon locked in, all my dignity will go as I have to have carers to get me on the toilet, change my knickers and clean my teeth. I can’t communicate unless I have eye gaze technology. If I want to end my life I have the choice of suicide on my own and it might not work and if I don’t succeed I might be in a mental health hospital with my colleagues and former students observing me everyday or I can go to Dignitas in Zurich away from family and friends or can stop fluid and food . I would interested in your views on this …you can reply to this blog and maybe we can have a debate !!,

Blog 37 -Awareness Evening of MND


Blog 37 – Awareness Night of MND
Last Saturday we had an awareness evening for MND, my friend Angie and her family initiated and did the work. Her dad died of MND , she has been a true friend as she has experienced the MND road before. Her family is so creative, her sons did a 24 hour sponsored computer game !!!! her daughter made so many bright coloured bracelets, her mother produced so many paintings and craft items with cushions, make up bags , purses and covered notebooks, her husband and sister did the raffle. Our friends did a BBQ, and brought so many delicious cakes with tea. We had 100 pebbles from Anna, as last year but they were so beautiful. We had art tables, count the sweets and a beautiful mosaic of the MND cornflower, lanterns and a hand massage corner. All evening we had musicians,and we ended with film “I am Breathing”. .. As a team we raised £1650 for MND research
The midnight walk raised about £ 2500 for St Anne’s Hospice. So we are a special team and Angie is the brightest star !!!

When we parked up at the venue and the first person I saw was Anna, an old friend from my catering days, she had been in contact with my blog but I haven’t seen her for 30 years , she came from Anglesey. What a surprise ! I really wanted to communicate with her but I was in the chair to massage hands and I had oil in my hands so I couldn’t type on the iPad . So we sat in silence and I was massaging her hands… How odd we wanted to say everything but actually we communicated by touch. I communicate with gestures and hugs and silence but people know what I want to show and my emotions . I read people’s faces rather saying “how are you ?”. I recognise a awkward silence , a angry silence and calm silence and a anxious silence. Words can disguise people I practice mindfulness when I meet people and get the vibes.

As time goes I realise my limbs are wasting so I want to walk while I can, so I have been out and around … I want to write while I still can ..I apologise for my messy writing but I want to say messages to my precious family and friends. I want to cook, paint and clear out my mess of life. Time is going too soon. I realise I have wasted days when I am sleeping . Next week I am going to Dorset with Ruth around Lyme Regis, I want to find fossils on the beach , walk on Chisel Beach, paddle my toes in the sea, paint the sea and photograph the beauty of the world. We are going to a chalet in a field on a farm , sounds sublime ..

As I end my blog Sam has just called me and he has got 78% in his last exam !!!!! Its so hard and I am very proud of him !!! I can’t say that, so I just clap and he recognised my pleasure !!! Yesterday Joe made a new page of his website JosephrigbyPhotogrsphy.co.uk. I like it, it’s very good …look on My Work, and People and tap on Martin Minshall face !!! Ava is blooming, all is well !!!

Blog 35. – T he Northern Star Team was shining

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We had a wonderful team for the ‘Midnight Walk’ for St Anne’s hospice around Manchester city centre. We had 32 individuals donned with the shining star hats for the Northern Star team and the wheelchairs were donned with lights (thanks Angie). We met at my house and we had drinks, pizza, and we lit the fire in the garden and lighted the candles in the balmy night, no clouds and stars were shining down on us.

Chris bundled the wheelchair in the car and we are off !! When we got to the G Mex arena and we met additional friends and we put on our radiant yellow t-shirts. Our team was dancing and I wanted photograph them but I was in the wheelchair I realised I can’t photograph like I used to. When I stand up I need to have a walking stick to balance. I need three hands to take a photograph, the pusher was moving and I couldn’t say “stop moving” ! That’s a loss I have to accept but the atmosphere was filled with excitement and I didn’t dwell on my fuzzy photographs.

We left the arena and I remembered I got upset last year by the back of the t shirts which had the wording … ‘We are walking for ……….’ most walkers put the name who had died. I didn’t think I was here last year but I am but I don’t think I will be there next year. I noticed a team who had a photograph of a young teenager who had died, she was so beautiful and vibrant …so sad. As we left the arena we were a river of yellow in the city.

We strolled to Spinningfields, modern offices and upmarket shops. They had a band in a marquee and trendy restaurants with trendy bars with tables outside. I miss going to a meal with friends and chatting as I used to. I was a voyeur like a homeless person who can watch but never eat there. As we left the area a few young women were dancing framed by the windows of the club , they were dressed in tight dresses and high heels, they faced the walkers like prostitutes in Amsterdam. We walked along the canal old buildings and neon lights reflected on the water like Venice. We strolled by Dimitris where I celebrated birthdays, the smell of the food absorbed my senses, then we ambled around the Museum of Science where we went as family in the 90s when the boys were young and we saw aeroplanes, moving dinosaurs and enormous bubbles. The memories of Streets Ahead festivals where we were dancing to the samba band in the streets and the memory of my 36yrs birthday was crystal clear as the bomb descended on Manchester ..we were in Castlefield and Tim went to get my jazz shoes for my birthday gift I didn’t know if he would return ! We stopped for a minute while the walkers lighted the candles for remembrance. We walked past the Band of the Wall where I used to participate to jazz classes and the pub where we met after the Manchester samba band practice.

Pete was a good pusher but the pavement of Manchester is not easy going as they have cobbled roads and Annie was by my side all the walk, as she chatted to me , it must be hard having a monologue for hours but she stayed there and she got words as a reply on my iPad. At halfway my hands were so cold and they went rigid as they were cramping, so my friend Angie had gloves which was better but I couldn’t type on my iPad.

The last leg passed the gay village I young boy was lying on the pavement completely out of it but all his friends were taking care of him, we went to the university campus where I studied, worked as a lecturer and socialised in the cafes and bars. I have just lost my office which was wonderful, it was on the sixth floor where I daydreamed, worked into the night, enthused students on their dissertations, gave lectures to hundreds of nursing students and collaborated with my close colleagues. We passed the swimming pool where I took Sam every week and we had a pizza as I treat. The Midland Hotel where I wished I had an afternoon tea. We got back to the arena about 3am, Chris took me home and it was dawn and sky was becoming lighter and the birds was singing a lullaby to me.

So many people are supporting me and feel very loved and cared. I want to thank everybody who walked as a team on night, it’s more then I imagined. I had a glowing light in my heart, my body is wasting but my soul is warm as the gentle kindness of people who walked with me and have donated money. We have £1585 on the team website but many people have donated on their own page. I hope you continue in the years to come. Life is unpredictable and you or your loved ones might need the hospice in the future years.

Blog 34 – The alternative birthday cake

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I am 54 now I didn’t think I would get to my birthday but I am still living with MND. My birthday was so special as Ruth had a idea to make me a flower cake as I can’t eat cake. It was made with vivid sweet williams,fragrant geraniums and sweet roses with candles and sparklers !!! It was brought to me around the fire, it was so beautiful, Pete got some fireworks which lightened the dusky sky. Sam, Joe was there, and Alex and Ava who made my birthday so special. My sister Sue came up and Ruth drove to the garden centre and we picked cheerful orange and yellow cheerful Japonica, golden Nasturtiums, delicate alpines and a blush red Clematis . The garden is blissful and am so fortunate to have peace and tranquility.

I am conscious of self pity and complaining about the losses I have to deal with. I need reach out and make myself strong and firm up. Self pity is selfish as I can’t see the struggles regarding my family and friends and I can’t support them if I lose control. It’s acceptable to be sad or angry when I have lost another function like my fingers muscles are wasting and I can’t write as used to, but if I go down the self pity street I will get lost.

We can all take that path as we can feel sorry for ourselves when we have chaos,losses, arguments and disappointments but you need to rise above the black water of melancholy and indulgence. Don’t drown in the misery, keep control don’t compare yourselves to others as individuals who have more misfortunes and people seem to have no adversity.. I think self pity is chained to self esteem, if

I have a short life now and I am can choose the victim role or happiness. I am responsible for my life. I have adversity in the past and I have come through it and I can win this battle too ..it my choice . So I am in control in my MND and I can’t decide what I want to do. Whining just makes me miserable and I make everybody miserable .and I put the control in others hands. I will inform you about my losses as you need to know what I can do and what I can’t do but it’s not self pity .

So tonight I am doing the walk if people will push me, can you volunteer to push me for half an hour as I don’t want one person to push me as it’s hard so I want to get a rota .. You can still walk as you can register at the venue under the Northern Star Team .I don’t know how much but you can ring the fundraising office of St Ann ‘s . If you don’t want to walk or you are busy you can donate to the just giving website http://www.justgiving.com/L-Rigby

We are having an Awareness Day on June 28th June at 6.30 pm we are showing the BAFTA ” I am breathing ” again and we are having a BBQ, plant sale , DVD and game swop, BBQ art exhibition , music and cakes I doing hand massages . The venue is Woodley Methodist Church, Chapel Street, off Hyde Road Woodley SK6 1NF

Blog 33 – Peace in the body prison

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Blog 32

I have been to Portugal which was a treat from my sister Sue and my niece Nicola. I had a good rest in the sunshine. I saw a couple of sunsets over the sea, I love seeing the river of light to the sun on the water. I walked in the white sand to bathe my toes in the Atlantic Ocean. Tasted stewed apricots from the tree and read books.

While I was there I recognised my body is a prison as I can’t swim now, I can’t walk far, as I fall too much, I need to be in the wheelchair more often. I can’t enjoy a birthday meal with my sister, I can’t kiss my grandchild and rock and sing when she needs sleep, I can’t take photographs as I can’t get where I want, I can’t support my friends with a chat on the phone. I feel like I am in bird cage and looking at the ‘freebirds’ as they soar around me. I need to look in the cage instead of outside and be grateful of the space…..as this space will become smaller and smaller as the MND crushes me. I have to lie down most of the day, but I can still write, read, meditate and paint as I still have muscles in my hands although they get tired I don’t need to write my eyes gaze.

When I reflect this time last year I was returning from Croatia and I decided to write a blog and I was so active I walked the 10 k for charity walk for St Anne’s hospice I had neck muscles and I was fairly active. I still now appreciate everything I have. I can watch the colours of the sky and clouds and smell the flowers and observe Ava when she has a smile. I can still hold the torch of life, I acknowledge that is not shining brightly in my body but it still shining in my mind. I have had a bright light all my life, maybe I have used all the fuel too quick but I don’t regret that.

When I try to rest I realise I have so many tasks in the house and garden but I can’t tidy up anymore so I need to get pleasure from sitting in the garden and listening to the wind chimes and the water and feel calm and not get frustrated as I can’t do jobs. I have been doing so many tasks all my life and guess you do that too … There is so much tasks to do in life and we never stop either work and leisure. I recognise that people don’t enjoy life they have to go to the gym, they have to mow lawn, the have to do another shift and what do they buy ? ……. more stuff in the house that needs maintaining !!! Put on your list to chill out for an hour a day for a week just relax and give you calm, peace and happiness.

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BLOG 32 – The tree of life

BLOG 32 - The tree of life

Blog 32
Everyday is a challenge
….not to get upset,
….not complain,
….not to get angry,
….not to feel sorry for myself
… and make people close to me feel comfortable.

Some days I need to be alone as am tired and I can’t put on a smiley face. I am sat in my room, on my bed looking at the rain patter on the window. I heard a story of a judge who had Bulbar MND on Saturday on the radio, BBC 4 ‘Saturday Live’ . She died two years ago, they were so many parallels she was a widow with two boys and a her work involved speech. It strange listening to a sad story and it’s me ! I meditate to find joy in my head, find space from the MND as I go into into my mind not my body and I search for the thoughts are destroying me.

I open my eyes and practice mindfulness. I try to be here and not in the future so I appreciate the moment. It’s twilight the torrential rain has stopped and foliage smells sweet, the clouds take a amber glow as they stacking up in the deep blue sky, house martins are soaring in the sky as they call over the dull sound of traffic in the distance. The trees are becoming silhouettes, branches are like stipples from an etching.

I recognise that tree before me is like my neurones but some of branches are bare of leaves and have no life, the disease is getting closer the trunk it might take months. I found out MND also damages the roots of the tree as the neurones are identical to the neurones of frontal lobe dementia. When I found about dementia I thought I can’t lose my mind as well as my body!!!!!!! Only a proportion have dementia but I am worried about what I forget and my mood changes. I reflect and I realise that I cannot control the MND, it like a cancer it goes where it wants I can’t change the direction and so worry is a waste of time.

We worry too much, worry is heedless as we can’t control our life, if we can change our life do it, but worry is like rocking in a chair you can’t go anywhere. We can’t alter our lives with worry we just become anxious and destroy the beauty of the world.

I need to tell you about the the four events MND awareness month in June

1.Clare Schilizzi is organising a run or a walk around Chorlton Park on the Saturday 14th June, at 10.30 am there will be cakes to buy …If you can go down and support us it would be really good . The funds are towards MND.

2.A bunch of people are joining the Northern Star team for the Midnight Walk on 20th June. The fund is St Ann’s Hospice . If want to support us join our team or go to website http://www.justgiving.com/L-Rigby

3.Helen Manning is doing a 5k run with her partner Mark and daughter Betsey on 21st June at Hackney you can go down there if you are in London Venue: Hackney Marsh, Homerton Road, London Borough of Hackney, London E9 5PF at 3pm. If you want to support her just go to the website http://www.justgiving.com/Helen-Manning1

4. Angie Wood, Brenda Stott and I are hosting a Awareness Day on June 28th June as we had last year on 28th June in the evening we are showing ” I am breathing ” again and we are having a BBQ, plant sale , DVD and game swop , music and cakes … I will send the detail about time and venue later ..