Guestbook

Thank you for visiting! Please spare a moment to sign my guestbook. For comments related to a particular post please add them to the relevant post in the blog. Thank you.

Best wishes

Mark

94 Responses to Guestbook

  1. Paul Speed says:

    Hi Mark

    I can’t even imagine what you are going through but you humour and honesty are inspiring. It’s so difficult to know what to say but i didn’t want to pass by without saying hello.

  2. Ziggy Rizz says:

    Your blog is an inspiration to everyone and you have a wicked sense of humour! I hope that everything is ok and that they give you enough room to breath, stubborness is a wonderful trait 🙂
    Take Care Ziggy

  3. Carolyn says:

    Thinking of you Mark, take care my friend x

  4. Carolyn says:

    Hi Mark just popped over to make sure you’re looking after yourself sweetie xx

  5. Carolyn says:

    Hi Mark just popping on to make sure you’re ok x

  6. Robin Taylor says:

    hi Mark

    Just read through your blog, and looked at the London pics. You really are a brilliant writer – a great skill – as well as being able to take some really good photos. \i’m ashamed to say I’ve not got mine at all organised yet. I’ll be in touch soon via regular email.

    Robin

  7. Ted Sullivan says:

    Hello mate, hope your settling into the routine of no work and a life of leisure. Just thought I would send you a quick hi just so you know I am thinking about you. You know I am more of a pick up the phone kinda guy, why type a few words when I can talk shit for hours. Have you had Oscar in to build you some bionic arms yet or are they still at the design stage lol. Hope your looking after yourself and keeping yourself out of mischief. Don’t forget what I said to you either, Im only 20 mins away. Anyway back to the slaving for me, but you take care and I will talk to you soon. Love ya dude Tx

  8. Iris Yang says:

    Dear Mark

    You are be strong and never give up, remember we are always with you together.

  9. Ziggy Rizz says:

    Hello, just stopped by to see if you were ok. I hope that is as well as it can be and that you are being strong no matter what. Thinking of you. Ziggs

  10. iris yang says:

    Hi Mark

    How are you lately? how are you feeling now? hope everything is ok.
    Take Care

    Iris

  11. Ziggy Rizz says:

    Hi Mark – just thought I would check in and see how you are. I hope that you are well and that all is ok with you. Take care Ziggs

  12. Jason Glover says:

    Another great read, brother. I’m really impressed you can type so much and so well even if you’re now having problems with your fingers and hands.

    Take care
    Jason

  13. hi mark i just came upon your page,your sense of humor with what you are facing is amazing,it has been a great read and very insightful i hope you are as well as can be expected.

  14. Ted Sullivan says:

    Hello me ol mucker, only me. Hope all is as well as can be expected? Good results from the docs and a bit of assurance that your not gonna pop your clogs tomorrow. I think as you say the days are flying and were sliding into autumn already, where does the time go?. Hope your keeping yourself busy and not getting too bored. I will give you a call as soon as free time comes up, been working weekends decorating the mother-in-laws house, I get all the best jobs. Anyhow best press on, whips to crack people to beat with the stick. Don’t forget to put a coat hanger in your chops and keep smiling, its what gets me through each day.
    Love ya lots and take care, Ted x

  15. Mark,
    Thanks for reminding me of the blog address.
    Your blog reveals the amazing courage that we all observed at Lilly. They were strange times for us all and I think the way you dealt with your truly terrible news helped many of us put into perspective our relatively trivial issues as we faced closure of the site.
    So glad to see that you can bear these terrible tribulations with a smattering of humour. Long may you enjoy the things that you like doing such as your photography. Keep some film handy – I hope one day to present you with the job of photographing my Routemaster when I get round to getting it. There, two age telling clues in the same sentence…
    Bill

  16. Ziggy Rizz says:

    Hi Mark,
    Glad to see that you had a good birthday, hope the visit with the Gp showed a lowering in Billy 🙂 The research looks really rather promising and as a psychologist I very nearly never ever say that. Hopefully they make some head way soon. Take care of yourself Ziggs

  17. Hal says:

    Hello Mark,

    Found your blog while fretfully searching for information on muscle diseases. I’m not diagnosed with anything yet, but I have been seeing a neurologist for some troubling symptoms. I’ve had MRI’s of my head and neck that were normal. I had a lots of blood tests that were all normal. I had a Nerve Conduction Study that was normal, but my EMG was not normal in 3 places. I had a Lumbar Puncture and they tested the fluid for everything. The spinal fluid was all normal. I just had a muscle biopsy and we are waiting for those results. I live in the Dallas, TX area and my neurologist says he is going to send me to his mentor in Houston next. He says it is for a second opinion. I don’t really have any noticeable weakness anywhere, but I do get out of breath really easily when I use my upper body for anything. My major complaint is twitching muscles. I think the only place I have not had muscle twitch would be my feet. They have been twitching for a couple of months.

    All the above writing was so I could ask you, did you have muscle twitching with your symptoms? Just curious. Hope you’ll forgive me asking you a question suddenly. Thank you.

    Hal

  18. Maria V says:

    Good Morning Mark
    I was just browsing and came across your space. I feel deeply touched by your personal report of the deterioration of this disease. Some years ago, I used to work as a homecarer and therefore have a little insight of the need for care at home. I also know how difficult it is to get the right care plan and how limited resources are in this field. Back then I found my job as a carer very demanding but also very rewarding. I had nor idea about the speed of the deterioration of Motor Nerone Disease until I read your account of the disease this morning and I sincerely hope you’ll get the right care very soon.
    My kindest regards, Maria

  19. Graham S says:

    Hi,
    I just found your Space.
    Just letting you know that I admire your courage and humour.
    And thanks for sharing what you’re experiencing.
    All my very best wishes to you,
    Graham.

  20. Maria V says:

    Good Morning Mark
    Very many belated birthday wishes on your 48th Birthday. You seem to have had a very nice time….I love the cake, it looks so bright…
    I have recently turned 46 and have had the same problem, fitting all the candles on the cake…lol. Never mind. I bet it tasted wonderful.
    Have a very nice week-end, Mark.
    Kind regards, Maria

  21. Ziggy Rizz says:

    Hi Mark, I hope that you are feeling as well and as optermistic as you were in Nov, it was a huge milestone for you well done. Take care Ziggs

  22. Ziggy Rizz says:

    Happy New Year to you, I hope you are ok
    Ziggs

  23. Hi mark
    BRING ON THE WARMER WEATHER!!!

  24. jane says:

    Hi Mark,
    You won’t know me but I’ve come across your blog site while trawling the net for MND blogs. My husband (who died from MND aged 48 last August) also maintained an on-line blog throughout his illness and I’m considering publishing it, so just seeing whether there’s a market for that sort of thing and what’s already out there? I know from my own experience the courage and humour that you need to have to face this awful disease, so I definitely can appreciate your strength and positive outlook, it may not feel like it sometimes, but it will help. I’ll check in regularly from now on, if you don’t mind? Bye now.

  25. Ted Sullivan says:

    Hello me ol mucker, nice to know your still kicking and screaming going into 2009. I know I phoned you not too long ago but I often pop on here to see your latest adventures, sounds like Tin Tin. As always you give me a chuckle when I read your notes and mails etc on Face book, and its good to know that although deep down its naggin you, you dont lose your sense of humour, which as you already know is bright as a button and sharp as a knife.
    Keep well and keep safe, you know where i am if you want anything.
    Love and thoughts Ted x

  26. Jason Glover says:

    Thanks for commenting on my first blog post. I’m already planning my second but I’m a long, long way from matching your prolific output.

  27. Jason Glover says:

    Wow! That is one epic blog and I don’t think I spotted a single error. You’re getting like me. 🙂

  28. wow what lovely pics of you and francesca,and the duck.really good blog mark .

  29. Jason Glover says:

    I’m glad you’re still writing. Good stuff!

  30. Ted Sullivan says:

    Hello again Mark, just had a read through as I often do to see what life is throwing at you. I hope you have gone for the turbo stenna chair, ground to first floor in 3.5 seconds. Nice to know that you are getting pampered by your house mates, and they are catering to your every whim…..how the other half live a. Glad to hear your still getting around, albiet a bit slower and not so far, resist the wheels for as long as you can.
    Dont forget if you need anything just call.
    Talk soon Ted xxx

  31. Amelia Gray says:

    Hi Mark, what an amazing man you are. I came across your profile by pure accident I was searching for articals on MND. My mum has MND she was diagnosed about 3 years ago. I live in Australia and I am trying to create more awareness about this horrible disease. I was thinking about writing a book in which people could share stories about themselves or their loved ones to help people understand and deal with this disease. I just had a quick look at your recent posts and what a great attitude you have, just like my mum, who is suffering incredibly, you just keep going. Good for you and I wish you all the best. Never give up hope ok!

  32. Hi Mark, my dear brother,
    Anne and I have just read through all the entries in your Guestbook and it is great that people from across the World spare the time to look at your blog, and add a comment and also to your familiar friends that keep in touch here too. The way that you present your blog showing your great sense of humour and courage fighting this horrendous disease and the attention to detail in your daily life shows that you really are staying positive and not letting MND control your mind as well as your body. Stay strong x x x x

  33. Jason Glover says:

    I didn’t know about your lung results. Try to stay positive. I’m glad the software is working out ok. It’s really impressive that you can write the whole blog using it.

  34. Deb says:

    Mark,
    Happy belated birthday!
    I enjoy your blog. You have an amazing attitude and incredible strength.
    I wish you all the very best,
    Deb McGee

  35. Deb says:

    Mark,
    I also experience swollen hands and curled fingers. Have you considered wearing a compression glove to help with the swelling? My occupational therapist suggests this. She also fashioned some individual fingers splints for my left hand as these fingers seem to curl more than the right.
    You probably have all of this under control but I thought I would put it out there, just in case.
    Deb McGee

  36. Ted Sullivan says:

    Hello me ol mucker, as always just checking up on you and having a read of your latest adventure. As always your not letting your condition beat you too easily, as they say your not going down without a fight, and good for you. Glad to hear you have in some way got the carers that you deserve as long as they can stay well enough. Now I want you to watch yourself on those damm stairs, I dont want you doing a Nadia Comanche dismount down them, because you wont be getting 10’s from me.
    As always my thoughts are with you and your never far from my mind.
    Take care mate
    Love ‘n’ hugs Ted

  37. Mark
    I have recently started a degree in Speech and Language Therapy, and have to give a presentation on MND tomorrow. I just happened to stumble across your page and have found it extremely interesting.It has given me a great insight into the realities of living with this condition. I admire your positivity and dedication in keeping this page regularly updated! I will recommend your blog to others on my course, and I have already bookmarked it so that I can see how you are getting on. Thanks, you have given me something real to talk about tomorrow, instead of just quoting a text book!
    Best wishes
    Melinda

  38. Deb says:

    Dear Mark,
    Sorry to hear you are having such discomfort. MND is awful in so many ways, isn’t it? I, too, suffer from stinging eyes. It drives me mad as it hits all of a sudden, one or both eyes, and is very painful. I don’t use artificial tears, I find relief when I press a handkerchief against my eye. Thank goodness I am still able to do that.
    I wish you all the best.
    Deb McGee

  39. Deb says:

    Merry Christmas, Mark!

  40. Jason Glover says:

    I’m glad to see you’re holding up in the cold weather, even if your care package is disrupted. I too wish for the snow to go away although it’s likely that we’ve got at least another week of this, with it possibly getting even worse as fresh snow falls on what’s already there and temperatures stay below freezing. The best place to be is definitely indoors.

  41. Ted Sullivan says:

    Hello again me ol mucker, just thought i would leave a little one for you and to let you know I was thinking of you. Read some of your new trials and tribulations. You do have them dont you. Trapping yourself on the bed, and being dropped like a rag doll, did give me a funny image of you, but im sure in real life it was bloody frightning to say the least. I take it also you will be playing goal keeper in the bedroom 5 a side tournament, now you have a goal post. I just need to know If it coincides with the world cup, because I might not be able to play, as Brazil were looking for subs and I put my name down.
    I hope you are keeping as well as you can and that your carer situation has fully settled down, dispite the snow hindering them to your door.
    Right Im making like a hockey stick and pucking off, so until next time, look after yourself, go careful and I will talk to you soon.

    Love and hugs as always
    Ted xxx

  42. Paul says:

    Hi Mark, have just come across you page. I too have MND, diagnosed in April 2009, and seem to be much faster than you at progressing, LOL.. Your detailed descriptions are helpful as I still struggle a bit with accepting what’s coming my way Three falls yesterday whilst on my own have convinced me that I need the on-call alarm system. Do you use Dragon 10 and does it cope wth a bit of slurring? Noe I’ve found you, I’ll keep in touch.

  43. Jason Glover says:

    Well done, brother, keeping your blog going for two years. That’s a very impressive achievement, especially considering the almost daily updates you now do. I always make a note of checking each day for your latest posts.

  44. I admire you so much, Mark. It is easy to have good humor and courage when all is well. But in your circumstances, you show class, good humor and courage that I marvel at. Your journey is one that require bravery, and you have what it takes. Your candor and tenacity– well it puts all of us to shame who worry about the trivial and mundane. Love you… b

  45. Mark– please ask for a Lidocaine patch to put on your back. It is a local pain killer and works great. It doesn’t have any effect on your system, as a whole, but does WONDERS for back pain. I was recently prescribed this and it is a Godsend. I put it on my lower back and it does the trick. Just a suggestion, but I truly think it will help you a lot. b

  46. Mark it has been interesting reading the diary you have perevered in witing for all this time.I have just been diagnosed withMND and was interested in how the disease progressed with you fom the early stages .It has been two years, I see since you were diagnosed and I am interested in how rapid it was in manifesting itself to the degree of pain you evidently have at the moment.I am at the very early stages although been unable to walk unaided for three months now.It all started with drop foot in December 2008,it’s now 28th March 2010, and then seemed to get worse to the degree of not being able to walk.I got a wheel chair on Friday last which at least gives me the opportunity to see the gardens and listen to the birds on bumble up to the pub occassionally.I love bird life and photography and the frustration of not being able to persue both interests is very frustrating as it must be for you also.I don’t know if you can respond to me but I would dearly love to hear from your experience as to what I might expect.
    Cheers, Chris

  47. I worry EVERY DAY we don’t hear from you. I hope you are okay!

  48. YAY, from California, USA !!!! Yahoo !!! xxx

  49. Great news; use your legs and feet if you can no longer use your hands and arms! The technology sounds wonderful, and fantastic. Can u imagine Lou Gehrig—without this technology? Poor, brave soul. A champion, a brave man, through and through.

  50. Ziggy Rizz says:

    Hello Mark, it is great to see that no matter what you still find a way to express yourself, clearly, with humour and compassion. I can only hope that you retain the strength that comes through in this blog and manage to continue to produce items – in whatever form – and that the support network keeps you going. Ziggs

  51. Ted Sullivan says:

    Hello Maaaarrrrkkkkkkkk, glad to read your being treated well, too bloody well by the sounds of it, cakes and cream and all the naughty but nice items from your carers. At this rate if they keep indulging you in this manner I will simply have to move in with you to help take the strain, its a tough job but someones got to do it. Glad to read also that your managing to get some rest with your new bed, although at your fatty rate I hope you got the matress re-inforced. You can tell im jealous of your cake eating exploits, lucky git.
    Anyway best be getting on, whips to crack, souls to sell, the usual. So until next time and as always, take care and look after yourself, and if your carers do end up making more than you can eat, you have my number, and I will come round and help you get through them lol.

    Bye for now me ol mucker

    Txx

  52. debbie brook says:

    Hi Mark,
    As promised I’ve just read your last blog entry and cried yet again. I just wanted to say what an inspiration you are to me and all of the carers that look after you. Your sense of humour and the way you cope with your illness never ceases to amaze me.
    See you very soon
    Love Deb xxx

  53. David Jones says:

    Hello Mark,
    Fantastic diary ! Well done. Only when you have the disease do you understand the sheer frustration of living with MND. I was diagnosed in 2003 and
    I am now at the same disability stage as you. What would we do without our Computer. My muscles have shrunk but my brain has developed with the Internet.!!
    Keep fighting. Dave (http://www.jonseemnd.co.uk)

  54. Jason says:

    Welcome to WordPress!

    The new site looks great and I wish you lots of success with it.

  55. John Grantham says:

    Good to see your sense of humour is still in tact. My partner was diagnosed with MND last October so we have a lot of this to come. I hope you continue to enjoy what there is to enjoy.

    Very best wishes

  56. Christian says:

    Hi Mark,

    One thing I have noticed with this new site is that it is faster, well at least on my new PC, which used to be yours 🙂 Take care my dearest brother and keep up the good work.

    Love Chris x

  57. CHRIS RUSSELL says:

    MARK,
    I WAS GOING TO SEND YOU A HAPPY BIRTHDAY CARD BUT COULD NOT GET IT TO GO THROUGH YOUR POST E MAIL.HOWEVER THE SENTIMENT IS STILL THERE………..HAPPY 50TH BIRTHDAY.MINE IS NOVEMBER 13TH.I WILL BE 59.I DIDN’T REALISE YOU WERE SO YOUNG.JUST HOPE I CAN MAKE IT TO 60 NEXT YEAR ALTHOUGH IT’S FRIGHTENING HEARING ABOUT HOW YOU HAVE REGRESSED SINCE DIAGNOSIS.MY “D” DAY WAS MAY 19TH….SHALL BE INDELIBLY IMPRINTED ON MY MIND FOR THE REMAINDER OF MY LIFE!
    IT IS INTERESTING TO READ ABOUT ALL THE INTERESTS YOU HAVE HAD TO RELINQUISH.I AM IN THE SAME PREDICAMENT JST FROM THE LAST SIX MONTHS ODD.I HAVE GIVEN AWAY MY GOLF CLUBS,MY TROUT FISHING EQUIPMENT, 50 YEARS OF A COLLECTION AND RECENTLY MY BICYCLE TO MY 23 YEAR OLD SON.BLESS HIS SOUL,HE HAS CLEANED IT UP AND RESPRAYED THE BAGGAGE BAR,GOT HALOGEN LIGHTS,PANNIERS AND A COVER WITH A RACING ODOMETER.LOOKS FABULOUS AND PLEASED IT HAS GONE TO HOME WHERE IT WILL BE USED REGULARLY.NEXT IS MY SET OF 12 CAMERAS WHICH I JUST CANNOT GET AROUND TO USING AS ONE HAS TO BE DEXTEROUS OF HAND TO USE THE HEAVY SLR’S AS YOU KNOW.
    ANYWAY,I’M PLEASED YOU NOTIFIED ME OF THE NEW BLOG SITE WHICH LOOKS MORE IMPRESSIVE AND KEPP YOUR PECKER UP THERE PAL!
    CHEERS,

    CHRIS

  58. wordsmithsuk says:

    Hi Mark

    Thanks for getting in touch – your blog is an inspiration in so many ways. I shall follow you with great interest.

    With very best wishes

  59. Chloe says:

    Hi 🙂 i was doing research on MND through college.
    My grandad has this awful disease, and he’s doing the same thing he has a website he goes on and types everything that happens assosiated wiith MND,
    My grandad is alot further on that you as he’s had the disease for 7 years now, hes the most incredible man!!! and he’s very smart! and he’s blessed with a great family and his carers are lovely. My grandad is my biggest inspiration, as he cant speak anymore , its more a slurr its difficult to have a conversation but we always manage it.
    Iv read your blogs and thing you also an inspiration, and this blog is a great idea!
    i hope your all well, and you’ve left a smile on my face 🙂

  60. Alastair says:

    Just browsing for info on MND. Step- father just diagnosed with MND/ ALS. Symptoms started to develop about 2 years ago but conductivity tests did not indicae MND until a week ago.

    • mndals says:

      Sorry to hear that Alistair. A good place to start for professional information would be:

      http://www.mndassociation.org/

      They have a wealth of materials that can be downloaded in electronic format or ordered online. They also have a telephone support service called MND Connect (08457 626262).

      Hope this helps
      Mark

      • alastair gibson says:

        Hi Mark,

        I hope you are OK. You may remember that my stepfather was diagnosed in early Sept 2010. He passed away Yesterday (Friday 18/2/11).

        There have been some real ups and downs over the past few months. But I can honestly say that the care provision has been excellent at times.

        Respite in Myton Hospice Coventry. absolutely outstanding.

        Family need to be really strong supporting. I do not want to give too much away but the time together has to be quality time. The angst of changes in circumstances hit some of my family hard. But they coped.

        My step father passed away in my local hospital. He was not in there very long.

        Please pass this message on to bloggers. Fight for your rights. Do not baulk at changing things to make care easier. One of the strains on people was the sheer amount of professionals involved in care. Even though things happened quickly.

        Local authority provided funding for wheelchairs/ modifications/respite/ care in the home….2 people 4 times a day. Macmillan nurses involved. MND association etc.

        during the final few days Step father wanted to eat just solids but house officer locum tried to force him to peg feed/ tube feed him. Sister on ward made it quite clear that he had the capacity to decide. She was a total professional.

        It is important to keep notes at all times. Take them to the hospital so that new doctors/ inexperienced people have an understanding of where you are at. Imagine my sisters anger when the locum tried to test step father for reflexes. He admitted that he was totally inexperienced with MND. Google it? Maybe put it in an information pack for carers/ professionals. Or ask for a pack to be put together.

        It was also a blessing to see him at peace.

        A little bit of irony as well. My sister used the toilet facilities as we rushed to be with him before he died. A lady walked in and looked at herself in the mirror. She said ‘ I have just been diagnosed with MND’. We were too late but as I said, it was a wonderful experience to be able to hold his hand and say goodbye.

        You know what, I work in care but I have learned so much about humanity these last couple of years.

      • mndals says:

        Hello Alastair,

        I am so sorry to hear of your loss. Small consolation I know but at least he is no longer suffering from this horrific disease. I hope you have many fond memories to look back on and cherish.

        Thank you very much for your observations and advice. Let’s hope that those who are unfortunately starting out on this journey benefit from the experience of those who have gone before. And that of course is one of the drivers of this blog – to pass on my experiences in the hope that they help others.

        Best wishes

  61. mipensas says:

    Hi Mark,

    I can’t find a way to contact you in person, but I’ve been reading your blog since my novel decided to write itself and gave one of the main characters MND instead of a road accident/coma which was my original intention. Completely coincidentally, his name is also Mark. I hope the book (if it is ever published!) will bring more attention to MND.

    Best wishes

  62. Lorna says:

    Hello Mark
    Just to say you have been my inspiration since finding you on the MND website. I read your diary as often as i can. My husband was diagnosed on the 27th July as having MND but he still needs another EMG done on the 12th October, with a trip to the Neurologist on the 19th October to confirm.
    I think we already know the outcome. His arms and hands do not work very well at all,he cannot do buttons on shirts or tackle fiddly jobs, he had to give up wotk in August as he was an electirician and unable to work with his hands. His shoulders have just started to deteriate and when I rub cream in to try and help I know he has lost lots of muscle, he cannot lift a cup without two hands and then he sometimes spills it. I have just printed your first few months off for him to read as he cannot use a computer. He was 60 on the 16th Septembe and we gave him a big surprise birthday party, he was so touched that he cryed with Joy as to so many people coming to see him. I have just took him to Lake Garda for 10 Days with our daughter and son in law to help, he had a nice time but the heat made him more tired than at a home. Unfortunatley for him his hobbies are gardening and DIY, so he has to watch me tackle the jobs he has always done and I struggle. I work full time and leave things out for him each day until I get home to be able to cook for him. As of today we have seen an occcupational therapist and seen the MNd Nurse who covers the South west they were a great support and hopefully we will get some more support soon.
    We live in North Devon and thank you once again you have helped me a lot.
    Lorna

    • mndals says:

      Hello Lorna,

      Thank you for your kind words. I hope that the links to the various resources I have posted may prove helpful to you. It is always hard to know what to say when someone is faced with this terrible disease. Sometimes words seem so inadequate. Nevertheless based on my own personal experiences I think the best advice I can give you is to cherish each day, do the things you want to do now rather than later, and plan ahead rather than wait for a crisis because sometimes the wheels turn very slowly like they have in my case. I presume that you have already been in contact with the Motor Neurone Disease Association? They are a good source of information, equipment loans, and in some cases financial support. It’s often been said that the help people receive in this country is a bit of a postcode lottery. I only hope that you receive the help you deserve down there in the West Country (which is a place I have some fond memories of). Fingers crossed for the 19th!

      Mark

  63. James says:

    Hi Mark
    I hope you dont mind me writing.I was just trawling thriugh various web sites and for some reason decided to read your blog. Inspiring stuff lad, keep up the good work,i will look out for you when i can

  64. JUlz says:

    Hi mark..i have been reading through a few of blogs..they are very inspirational. My mother inlaw has MND, She has gone down hill so quickly and its so frustrating for her as she is unable to speak properly now and move about. She lives with partner (her son), the kids and myself. we dont have home help, my sisterinlaws take turns comig to stay tp help care for her as we are both only 27 and have 2 small children. My mother inlaw will not sleep, and hasnt for months now she is having cramping in her legs abd body..its so hard to watch her go through all this but nothing we have tried works for her pain or sleep. she had sleeping pills, herbal medicines, morphine and we have also turned to prayers. im just wonding really if you have had any of these problem and what have helped for you? Its so nice to see you in your pictures smiling, and to hear you still have hope.
    Thank you for taking the time to read this.
    Julz

  65. Prof Dr Nagarajan Venkataraman says:

    Dear Mr Mark,

    I am a Neurologist, and I am in the midst of patients with Motor Neuro Disease.
    My first job is to encourage the relatives rather than the patient himself.
    Of course, I advise my patients to have and to take jobs to win the disease.
    My best wishes, and keep your muscle, neurons active, take lots of anti oxidants, beetroot juices, and cherries and strawberries.
    with best wishes,
    Prof Dr Nagarazjan V
    India,
    Senior Neurologist

  66. Mark Nicholls says:

    Hello Mark,
    I started reading your blog last night and couldn’t put it down. I’m trully mesmerized by how much courage and determination you have, it is so inspiring. I found your website literally by chance. My friend has just been diagnosed with mnd and I was online seeing what I could do to help him. I’m so glad I did because the first google I did found you. I will pass your website onto him and keep in contact myself. Keep smiling Mark! you are pillarstone to others. Kind regards mate, Mark.

  67. Ted says:

    Hello my little darlin, trust your well and enjoying the sunshine. Been a bit busy since the last time I mailed but your never far from my thoughts. I am always wondering what latest gadget you have got or more lovely females catering to your every whim. Its nice to see supportive wishes from friends and more so I would expect from strangers looking to find out more. I am sure your stories, give people a true personal account of the trials and tribulations your daily routine takes you through both high and lows. I hope all has settled now with you living downstairs and with the carers. I know past times have had thier frustrations, but lets hope they are weighed in your favour now. I wished i was in a wheel chair the other day. I needed to be about 8 inches shorter, so I would have missed my head on the edge of the garage door. Twatted it a good un, saw stars and it wasnt even night time, still laugh it up shorty. Anyway best be getting on, souls to sell, whips to crack. keep safe, keep well and enjoy spring and it wonderful delights. Love you man x T x

  68. david g says:

    Dear Mark,
    I havent got a clue what ive got and I am experiencing lots of muscle probs,I found my way to your site for many reasons not just for similarities but I really wanted to know how it affects ones life as one goes on etc. I started at the beginning and over a period of time I am up to date now.
    I cannot tell you how much respect and admiration I have for you,you have helped me so much I have learned so much from you and about you that I feel I have known you all my life.
    You have opened your door and life to the world on the reality of MND and your personality shines through, the weather here in suffolk has been lovely too and makes such a difference so glad you could be out in it to,long may it last .
    God Bless Mark keep the sun coming.
    David

  69. Hana says:

    Dear Mark,
    Your blog is fascinating to read and the rest of your website so informative and helpful. You are hugely refreshing. A family member has recently been diagnosed with this horrible disease so research bought me to your site. Thank you for so honestly sharing your experiences and feelings. It is a gift to all those needing support.
    Keep writing!

  70. Lorraine says:

    Dear Mark,

    I hope there will be a cure for Motor Neuron’s soon and you will be ok and everyone else who is unfortunate having the disease.

    Best of wishes,

    Lorraine

  71. Sweetpea says:

    Hi mark just checking in : ) hope you manage to get out in the garden when the sun shines.

  72. Ted says:

    Hello me ol mucker, nice to hear your out and back home at last. Hope your new 24/7’s are fitting in with you and the new home. Shame about the wheelchair for computing but like you say atleast you can still comunicate in a proped up position in bed. Also hope you have sorted out some cream for your legs, bit of a bugger one would think especially if they are a bit itchy, I bed you haven’t got a toe button for that irritation. There is possibilty I might be over your way next week, if so I will give you a call and pop in. Until then, take care and see you soon
    Txx

  73. sarah tribe says:

    Hello Mark,
    yesterday I cut a very special vibrant bunch of flowers from my allotment for my dear friend who is travelling the same road as you. As I chose the choicest blooms I thought of you and your latest missive now some days ago. Stubborness and determination are traits shared between you and he alongside the losses you catalogue and that I am also seeing all too quickly now. I have strived to punctuate his descent by little special things so he may know I am thinking of him and will continue to do so despite a hastening static existence. Could your brother write a posting to update us all? You would have liked the flowers, I know he does and honey and cherries and just the right amount of mustard on his picnic ham sandwiches. Within his current packaging, I see him. I see you too. Sarah.

  74. Jgomez says:

    Hello Mark;
    I have no disease just happen to come across your blog and couldn’t leave without saying I love you…

  75. Sarah says:

    Happy Birthday to you too!
    Perhaps a family member can fill us in on your August?
    Arranged a flight for my friend to give him access to all his local favourite haunts.
    Got him out of his 6ft x 3ft space as you so confiningly put it. Birthday present, a bit early, as its not till February, but why wait?
    Still picking the flowers,
    Sarah

  76. Ted says:

    No words Mark just thoughts of you at peace again. May the angels treat you as kindly as you did to the people you knew.
    Goodbye Mark, love you
    Ted x

  77. sweetpea says:

    Mark thank you for the fun times we shared and i thankyou for letting me care for u but most of all thank you for being a friend. i felt honoured to of shared this part of life with u. i shall always think of you with the bluebells in spring and the iris as you knew my love for thenm as i knew yours with your mum. i know that you are looking down with that smile that could charm the birds off the trees. Rest in peace now love alison x

  78. Debbie says:

    Mark, my hero, my friend. Life wont be the same without you. Thank you so much for letting me be a part of your team of carers and for sharing a small part of your life with me. Im going to miss you so much and will always remember that twinkle in your eye and your smile and your wicked sense of humour. I have so many happy memories. Rest in peace now, no more suffering. Love always Debbie x

  79. Vic says:

    I followed Mark’s diary for several years and I got a lot of admiration for his his courage and for his talent of narrator, sharing the most intimate details of his struggle with this terrible disease. Rest in peace, love forever – Vic

  80. Jan says:

    Mark, I have been amazed and so inspired by your determination, courage, stength and your lovable personality. May you rest in peace now. Jan XXX

  81. Irene says:

    Mark, your site has given so much personal insight in to a cruel and merciless disease. Your blogs were written with spirit, humour, determination and reflection. Thank – you. Irene.

  82. alison turner says:

    Mark, yours is an inspiring story though one with a tragic ending, inevitably. Your fortitude and humour will inspire many people with MND or other terrible terminal diseases. My thoughts are with your family. Bless you all.

  83. Hayley B says:

    Dear Mark
    Thank you for telling us all your story, you have been an inspiration. Thinking of you and your family. Rest in peace xx

  84. Peregrine says:

    What a lovely soul Mark is. I wish him well on his future journey.

  85. Mary Luke says:

    I’m so sorry to hear this news. Mark’s MND journey was very similar to that of my husband Tom who died on 2nd July this year. They both showed an amazing fortitude through this terrible illness – may a cure be found.

  86. Julie Champken Jones says:

    Today is a difficult day. My husband who has MND has just been diagnosed with his 2nd dose of pneumonia in 3 weeks. I feel inspired reading these wonderful heart felt comments. It is true What Mary says that people with this cruel illness have remarkable courage and determination. I too hope a cure will be found.

    • mndals says:

      Thank you for your message, Julie.

      I’m Mark’s brother and so I know how you must be feeling. What I saw with Mark, as you’ve mentioned yourself, is that the people with MND do have tremendous courage. I was inspired by my brother’s battle with the disease, just as I’m sure you are with your husband. He met MND head-on and fought with great dignity. My thoughts are with you and I’m glad the comments on this site help. One of my brother’s last wishes to me was to make sure this site continued, both as a memorial to him and also to help others with MND and those who care and love them. Take care. Jason.

  87. Robert says:

    Thank you Mark (and your family). Being a recent fan of Katherine Jenkins, I read your posts on hearing her perform. Thank you for the effort I know that was involved. It gave a wonderful insight to her talent and reach to her fans. May your soul be comforted and those who share your disease, be strengthened by your bravery.

  88. sengheili says:

    Hi

    I can not imagine what you are going through but you humour and honesty are inspiring. I didn’t want to pass by without saying hello.

  89. Annie Wallace says:

    Hi
    I work in a Hospice in New Zealand providing education to generalist health care workers . I have found this blog with a personal story enlightening and so informative . I will be reading some of his written experiences to a group of 20 tomorrow to help the group understand the huge emotional and physical challenges that are experienced . Thank you for keeping the blog available

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