Third Anniversary

Three years after being diagnosed with Motor Neurone Disease

Three years ago today I received a diagnosis to a condition that had been baffling me since early that year: a weakening in the arms. Until I received that fateful news I just assumed that it was something that could either be treated or at least managed. I had resisted attempts to self diagnose through the Internet believing that a little knowledge is a dangerous thing, and medical diagnoses is best left to the experts. The idea that I might be here for only a short while longer never even entered my mind. After all why would it, I was still only in my forties and in all other respects I felt fine. And so I went about my business, anxious of course to know what it was, but also believing that everything would be okay. I just needed to get the diagnosis out of the way, accept the treatment and carry on with living!

Unfortunately it was not meant to be and on that cold November evening life threw a juggernaut at me in the shape of MND which completely and utterly changed the course of my life. In fact juggernaut (a force that is relentlessly destructive, crushing, and intensive) is a good way to describe what living with motor neurone disease, and trying to deal with a constant loss of physical abilities, is like.

And so here we are three years down the line from that fateful day when my life changed direction and sent me off on a reluctant journey. I look at myself today with a mixture of sadness and relief. Sad for all that I have lost or been forced to give up, whilst relieved of course that I’m still here at all. But there’s no getting away from the fact that this past year has been a truly awful one for me, the worst in fact in my entire life. Each year that I’ve lived with the disease has its own milestones; key events that stand out in my memory. During the first year it was giving up driving, working, cycling, photography, gardening, DIY, and cooking for myself. In other words all the physical things that enable us to earn a living, move around independently, maintain our homes and pursue hobbies and interests that make life interesting, rich and rewarding. During the second year it became a lot more personal as I said goodbye to washing, shaving, dressing, and feeding myself. Pleasures like reading books and magazines gradually slipped away, as did personal freedoms like climbing stairs and most walking.

This past year has seen me lose my remaining mobility which has effectively consigned me to living out my remaining waking hours confined to a wheelchair. Losing that last bit of mobility has had a profound effect. It has meant a complete loss of all my remaining dignity as I am no longer able to perform even my most personal care myself. I have now reached the point where I am totally dependent on others and have carers with me for practically all my waking hours. This year has also seen me confined to the house for long periods of time, and the frustration it has brought in knowing that I am wasting precious time has taken a terrible toll on me (although I try as much as possible not to outwardly show it). The long-running saga of trying to get an extension built on the side of my house has also caused me endless worries, as disease progression far outpaced my attempts at getting the house adapted to cater for it. I never dreamed it would take this long and at the time of writing this it is still not complete! On top of all this I’ve had all the additional stress of trying to secure alternative care arrangements after the agency I’d had since the beginning said they could no longer support me. Oh yes and let’s not forget the fact that I have spent more than two months of this year in a hospice! So all in all it’s been a lot to deal with.

Looking ahead I’m under no illusion and know that the coming year is going to be a very difficult one for me. I know that the disease is starting to encroach on life critical systems and indeed at times I can even feel it in my breathing. Anyone who’s been reading this blog since the start will know that my respiratory function has been in decline all along. Fortunately for me, possibly because of all the cycling and walking I used to do, I started well above average. But the last three years have seen that advantage whittled away. This year has seen a number of signs indicative of a respiratory system that surely by now must be flashing amber if I was to take the trouble to have another lung function test. An example of this is how I sleep: I started the year sleeping quite normally, that is to say horizontally, in my own bed. Nowadays though I use a profiling bed which has required a number of adjustments over the months to increasingly elevate my upper body to compensate for weakening chest muscles. Another example is how little energy I seem to have lately and indeed how hard it is some days to fully wake up. This weekend for instance I had a devil of a job to wake up. I must have fallen into such a deep sleep that wherever I was was where I wanted to be. I just didn’t seem to have much desire to return to the land of the living. A worrying development.

“I once gazed upon the face of Medusa and now I’m turning to stone!” That’s how it feels some days, this feeling of being trapped and slowly entombed in a body that no longer responds to my wishes. Paralysis to this extent must be one of the worst things to befall a human being. We evolved as a highly mobile species. This goes against everything that we are meant to be. Having lived all my life until recently with the gift of full mobility I can do nothing but grieve for what I have lost. Even now whilst writing this post I look out the window and see the beautiful autumn sunlight casting shadows on the green play area opposite my house and lighting up the trees. I would give everything I have to be able to stand up, walk downstairs, get my bike out of the garage, and go cycling down the country lanes and feel the thrill once again of air rushing past as my muscles worked hard propelling me forwards. It’s been said that to be able to live with MND you need to focus on what you can still do and not grieve for what you have lost. It is good advice but sometimes, believe me, it is so hard to follow. What is MND? It is quite simply a descent into hell! Perhaps it’s no surprise then when I tell you that there are days when I long for bed and the oblivion of sleep.

Looking back on the previous two anniversary posts I can see that this one certainly has a darker tone to it. That to some degree is inevitable with a progressive disease like MND. This cumulative effect of losing one ability after another, year after year, will inevitably take its toll. Life is full of challenges at the best of times but it sure makes things harder when you are unable to do anything for yourself. Since the very beginning of all this I’ve felt like I’m in a race to try and keep one step ahead of a disease that keeps moving the goalposts. I rely heavily on the goodwill of the people around me nowadays… and technology.

This year has been particularly bad but I’m hoping, despite declining health, that the coming year will actually see an improvement in my quality of life (for a while anyway)! I’m hoping that I’ll be able to get out more and see and do things once again. I’m also hoping that I’ll finally get the care package sorted out once and for all. All this stress is not good for my health!

Before I sign off I would like to say a big thank you to all my family for their love, my carers who do such a wonderful job of looking after me each day, and the healthcare professionals that are supporting me. I wouldn’t be here without you! I would also like to say thank you to my friends and to express my gratitude to all of you out there who have been kind enough to drop by, especially those who take the time to leave a comment. Many thanks, it means a great deal to me to get feedback. I do hope that you will stay and keep me company in the year ahead!

And finally… I’m in a bit of a reflective mood today so I thought I would end with a couple of then and now photos that illustrate more than words alone could ever do the dramatic change brought on by this horrific disease. My thanks go to my friend Bill for providing the old photo and to Debbie for taking the new one this morning.

Autumn 2000. Seen here with my colleagues at Eli Lilly. At the time of this photo I was participating in a computer implementation project. I have a lot of good memories of my time spent working here. Really nice people and interesting and challenging work.

Flash forward 10 years and taken today. Still here and celebrating my third anniversary with my constant companion. I've swapped work colleagues for a stuffed meerkat! This is where MND has brought me! šŸ™‚

Mark

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6 Responses to Third Anniversary

  1. barbara says:

    just say the word, mark, and i am on my way to you from california. what a privilege it would be to meet you and to help you in any small way i can.

    i wish i could bring my miniature burros to you. they love to come indoors on their tiny hooves, and they would shower you with (perhaps unwelcome) kisses! they are a jolly crew, shy and careful. i believe they are distant relatives of meerkats.

  2. Caroline says:

    Dear Mark
    I have been following your blog for about a year now. I’m grateful to you for being so open and honest about what this ghastly disease is doing to you. Your courage and your sense of humour shines through even at very dark times. Your film about the Meerkats made me laugh and cry. I shall certainly be following your blog this year. Caroline. Xx

  3. Jodie says:

    my heart reaches out to you

  4. Peregrine says:

    You are a hero Mark. Plain and simple, you are a hero!

    I hope your bathroom extension is finished shortly and that you enjoy the benefits soon.

    Yours with warm wishes.

    Peregrine

  5. Pennie says:

    You sound so positive and remind me of my husband Ken who also had this evil disease. He too was fantastic, never complaining and always tried to be cheerful which made the whole experience more bearable for us and our family. Ken died peacefully in 2005 and we have planted a tree on a nearby favourite hill which is growing so strongly I am sure he is helping it along! I hope this year is not too challenging for you and your family and friends. x

  6. Bill says:

    Mark,

    Sorry to hear about the challenges this disease has brought on, I can only imagine. You are an incredible writer, and your honesty and transparency have not gone unnoticed, carry on!

    Eli Lilly huh? I worked at a child company Physio-Control here in the Seattle area in the late 80s, manufacturing defibrillators and pulse oximeters, that was a great place to work for. :~)

    I await part 2 of your A new way to read magazines?, perhaps it will help clue in some of us computer jocks into how to write interfaces which are most user friendly. Very best to you and the crew in finishing up your house extension! — Bill

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