First anniversary

One year after being diagnosed with Motor Neurone Disease

Life never turns out the way we expect and none of us know what lies lurking around the corner as we travel the road of life, whether it be good fortune or something that will turn our world upside down and for the worse.

A year ago today a little after 5pm I was sitting in a consultation room at the Basingstoke & North Hants hospital listening to the worst news of my life, half in shock and half disbelieving that this could be happening to me. Wondering what sort of future I would have and even whether I would be here in a year’s time. I remember driving home alone that cold dark evening with tears running down my face wondering how I could break the news to my family and friends. Terrible, terrible day.

Although not really superstitious the number 7 is not considered to be particularly lucky in our family. I was 47 when I was diagnosed . The year was 2007. I was diagnosed on November 7. My appointment was 17:00hrs. Knowing all this perhaps I should have rescheduled the appointment! Oh, and to continue the theme this blog entry is my 27th! Spooky!

So here we are a year on from that terrible evening and I feel a tremendous sense of relief that I’ve made it this far and amazed too that the time has passed so quickly. In the time since I’ve learnt quite a lot about the disease through talking to people and reading other sufferers stories and I’ve discovered how variable its progression can be. I’ve learnt that in its most aggressive forms it is possible to loose the fight within six months, so I thank my lucky stars that I I’m still here. I’ve also read about other folk diagnosed around the same time as me who have unfortunately fared less well and again I give thanks that I don’t have it that bad. But nevertheless its impact on me both in terms of lifestyle and physical abilities has been significant. At the time of being diagnosed I was for the most part leading a fairly normal life but in the space of those twelve months I have had to give up work, driving, cycling, gardening, DIY, and housework. Whilst the following activities have become difficult to varying degrees: dressing, washing and self grooming, cooking, laundry, hand writing, photography, reading books and magazines, and high street shopping.

When we are young and healthy and full of the confidence of youth we all like to think where invincible and that bad things only happen to other people. Life has a way of proving us wrong of course. So here I am on a journey I never expected to take, sat in front of my PC struggling to get my hands and fingers to work well enough to type this blog entry. My shoulders and neck muscles ache and even my breathing muscles don’t feel as effective as they used to do and breathing after physical exertion impinges more on my consciousness. My legs are visibly getting thinner and I sometimes wonder if the coming year will be the last I will see the world from eye level. Yes, life is difficult and a little frightening these days. I’m starting to have tremendous respect for my fellow sufferers who have lived with this for a few years or more. Having it one year is bad enough. I keep listening out for the bedside alarm clock to go off. Hoping that any minute I’ll wake up and think “I’ve just had the most awful nightmare…”

By the way, anyone who thinks that these blog entries, which can be quite wordy, are typed up in a single session are under the wrong impression. I only mention that because I didn’t want people to think that I was typing away at normal speed after saying how difficult it was to use my hands. These recent blog entries are spread over a number of days because my hands tire easily.

But it is not all doom and gloom. In fact there is much to be grateful for: I’m still mobile and have full use of my legs so can get about and go for walks although I tire more easily these days. Apart from visible signs of wasting I’ve not yet started to suffer from drop foot or tripping over myself; I’m not on ventilation and can still get a good night’s sleep; I’ve not lost the ability to speak and my tongue has shown no signs of wasting so communicating my needs is easy; My throat muscles have not weakened and so swallowing food is still normal and indeed I can still enjoy normal food and currently have no restrictions on my diet. I think when you have a progressive and highly destructive disease like MND you really do need to try to find ways to see the good in everything otherwise there is a danger of being overwhelmed by it all. And as I’ve said to my friends before I do not want to look back right at the end with regret at how I let the disease ruin every day between now and then so I try to make the most of the time available to me.

It’s often been said that we should not dwell on the past and that we should look to the future. Sure, learn from the past but use it only to make a better tomorrow. Trouble is when you have something like MND the future is the last place you want to go. People sometimes say to me that I look okay which is always nice to hear, after all nobody wants to be told they look a wreck! But eyes can deceive. I may look indistinguishable to most other folk from a cursory glance if I was sitting down or just standing up chatting but as soon as I start to try and do something using my upper limbs then it quickly becomes apparent that something is not right.

We humans are very good at adapting to change, and just as my brain constantly tries to find a way to get the signals through, I continue to try to find ways to maintain a level of independence. But I must admit that at times I am so tired at constantly trying to come up with different ways of doing things. I just wish it would slow down and let me catch my breath. It’s not always easy to find alternative ways to do things. It’s been a little bit worse in recent months as my energy reserves are fading away and I have to make a more conscious effort about how I spend my energy each day. I’m starting to slow down.

If everything had gone to plan then I would have opened this blog entry with the words “Today I celebrate my Independence Day” :-D. But of course things never go to plan with this disease and like a racehorse I’ve fallen at the last hurdle – again! I set myself all these targets and hardly ever meet them. MND is a very unpredictable disease. It had been my intention to try and remain independent for a whole year but as I’ve already mentioned in a previous blog article, that was becoming impossible. The price of that independence was starting to climb and my quality of life falling rapidly. I am now no longer fully independent and for the past few weeks have started to make the transition to living with care at home. Technically I lost my full independence right back at the beginning of the year when I lost the ability to do my own grocery shopping. I’ll write about my experiences of adjusting to life with carers in a future blog article.

My life has certainly changed a great deal though and as the months go by they are starting to fill with an ever increasing number of appointments. I only have to take a look at my online calendar these days to see how many days throughout the month have health related bookings of one sort or another. I seem to spend half my time either waiting for people to call or just sitting in waiting rooms awaiting my turn. But I would rather have it like that then feel abandoned. This is not a disease you want to be alone with. I feel quite lucky that I have a good network of health care professionals springing up around me. Just as well really because MND is a very high dependence disease that requires a multi-disciplinary approach.

I guess every person forced to make a journey such as this will find their own way to deal with it. For me it’s being able to laugh at myself or with my friends and to not take life too seriously because life is short at the best of times. In fact I believe that laughter and the ability to keep on smiling is the best of all medicines. And it doesn’t even need a clinical trial! Neither does it need MHRA or FDA approval. It’s freely available. There are no negative side effects. And it’s infectious too: if I smile at you I bet you’ll smile right back! 🙂 See, told you so :-D.

Me, today - the anniversary boy! Still smiling along, singing a song…

Another way I deal with it is by keeping my mind constantly engaged in work of one kind or another – even if I have to create it. Fortunately though I have plenty of hobbies and interests and although some of them are proving challenging these days I have so far been able to find workarounds in most cases so that I can at least enjoy them to some degree. Anything but sit and brood and worry about tomorrow. I tend to take things one day at a time as much as possible and prefer to live in the here and now. Tomorrow will come soon enough. And as they say “Que sera sera”!

One thing I will say about the last year and that is I’ve met so many good, kind hearted and decent people; from the health care professionals keeping an eye on me, to the volunteers who come to visit me, and most recently to the carers looking after me on a daily basis. It has made a big difference in how I come to terms with the disease and get through each day. So surround yourself with good people, that’s my advice! And on that note I’d like to thank all my family for all the support and help they’ve given me this past year: to my brother Jason and his wife Chery who have been getting my shopping every week without fail and for all the little jobs that lie waiting in ambush each time they call round; to my brother Chris who although living at the other end of the country phones me every week for a chat; to my Uncle Alan & Aunt Joan who always make me feel welcome and generally look after me when I call round for our monthly coffee mornings/lunches. I’d also like to thank all my friends who call to either chat or take me out, and most recently to Ted and Carry for the lovely lunchtime meals and enjoyable chats, and to all those who email and phone me and to just make me feel like I’ve not been forgotten. Thanks to you all. I’d also like to take this opportunity to thank all the people out there who have been kind enough to spare a few moments to visit my blog and for all the lovely messages of support. It really means a lot to me. I hope you’ll stay for the journey ahead. I think I’m going to need all the help and support I can get in the coming year. But hopefully the disease won’t progress too quickly and will let me stay around for a while (he says with fingers crossed) – I’m not ready to pop my clogs just yet!

Yesterday I received some very good news indeed from my local hospice who called to tell me that the funding application that they and a team of health care professionals had been working on to enable me to have continuing care had been reviewed and accepted by the NHS. What this means is that the cost of my care at home package which I am currently paying for will now be met by the NHS. What a nice way to end my first year. It would have been quite a worry in the long term as the costs start to escalate and with no salary coming in not possible to maintain indefinitely. My anniversary present from the NHS!

And now it’s time to celebrate :-D. In fact I started a while back by taking a trip down memory lane and revisiting all the old cakes I used to eat as a boy. Week by week I’m working my way through Mr Kipling’s inventory: battenburg, fondant fancies, angel cake, Madeira, bakewell slices, jam tarts, Victoria sponge. Okay so not all of them are Mr Kipling cakes but they sure do taste nice and I’d forgotten how most of them tasted, hehe. One thing’s for sure those pesky motor neurones aren’t invited to my party after all the grief they’ve caused me :evil:. In fact they’re not even on my Christmas card list this year. Serve them right!

I’ve been writing this blog whilst listening to a Vanessa Mae CD. Sadly I cannot even play my air violin these days, haha. Guess I’ll have to sell it on ebay as I don’t get the use out of it any more :-D.

To celebrate I’ll be spending some time with family and having a nice evening meal although unfortunately family commitments mean that it won’t be until next week. Something to look forward to.

And finally…let’s close out with a few photos from a real highpoint in the year – my brother Jason’s wedding back in February to the lovely Chery, who is not only my sister-in-law but a dear friend. A very happy day indeed! All the photos below were taken by Stuart Holding of Ashley Photographic. Click on any photo to open a larger copy.

Sheila, Emma, Rowan, Chris & Jason

Three lovely ladies. Chery and her two sisters (Shella & Glendale)

That’s it brother, lean on my weak shoulder 😀

Signing the register

The happy couple

My favourite shot from the day. This one sums it up beautifully

Happy faces all round

A very rare shot of me with both my brothers – Chris and Jason

My second favourite shot from the day

At the wedding breakfast

 

Mark

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