Yes I am still here, I tell myself this every day when I'm struggling. This time last year having just been told I would probably be dead in 6 months I had no hope or pleasure in doing simple things. I planned nothing beyond that week, I wasted time worrying and this is one thing I would tell anyone with this diagnosis don't waste ANY time, do what you want now, tomorrow you might not be able to! I do now tentatively plan stuff more than a month ahead, Spring is just around the corner and Lesley and I are talking about opening up the caravan and getting back to our little retreat in Cromer. I am still able to stand up and walk, my right leg is pretty useless it has lost almost all of it's muscle tone but there is still a bit of life left in my left leg, I really need this leg as to be in a wheelchair permanently will be a massive life changer. A recent fall down the stairs at home has prompted me to take more care too, a stair lift is not an option as our staircase is not suitable. I only go upstairs once a day to bed, Lesley now goes behind me holding me up so it doesn't happen again. I know in the near future I will be sleeping downstairs, the dining room will be converted into my bedroom but for now though stairs are not going to beat me, not yet.
Since my last blog I have had another hospital stay, admitted again in the evening by ambulance with a chest infection and bronchitis. The MND experts reckon that after each hospital stay you will be a little different, this time the biggest change for me has been giving up food and drink completely. My respiratory consultant feared that food was entering my lungs without me realising so under his advice I am now completely PEG fed. Five times a day I have a yoghurt like drink syringed into my tube, along with water, this keeps me alive. I can't tell you how hard giving up food was and still is, I was a human hoover nothing was safe in this house. Lesley would buy Easter eggs for the kids and have to hide them from me, I thoroughly enjoyed finding them and sending her a picture to work of the half eaten remains, she'd moan at me but I know she secretly found it very funny. I LOVED all food. Christmas was particularly difficult I didn't join the family around the table but as I said at the beginning I'm still here, giving up eating means I will live longer, less chance of pneumonia, that thought tells me I have done the right thing.
A steak slice from Greggs was my last proper food, eaten on Monday 28th October at the Isle of Wight Ferry Port, in the car while waiting for a ferry home, the next day I was admitted to hospital and not eaten anything since, happy memories of a steak slice.
A big thing for someone with MND is secretions on your lungs, we can't cough very well so we can't cough stuff out of our lungs. After my hospital stay it was obvious I needed help at home with coughing. There is a machine available called "A cough assist machine" original name I know. These machines cost around 5K but are 100% necessary for someone with MND. If you want/need one in Bedfordshire your physiotherapist has to submit a business case to the powers that be within the NHS, this can take 3 months at least!
I couldn't have left hospital without one so the wonderful Physio team let me home with their one and only machine, while we worked out how to get one quickly. Thankfully I am under Papworth hospital, in Cambridgeshire for my respiratory needs, Lesley made me an appointment for the following week and amazingly the week after that I took delivery of a shiny new cough assist machine. I couldn't do without it now and it will also help keep me alive. It basically pushes air into your lungs, then sucks it back out, when you remove the mask it makes you cough.
Also last October I surrendered my driving licence. MND is a notifiable to the DVLA disease, with me being a driving instructor this was quite a difficult thing for me to do. However with my GP and my neurologist failing to answer their letters it was October before they decided I should take an assessment. By now I wasn't driving very much at all anyway, I couldn't cope with an hour long driving assessment nor did I want to take it so I handed back my driving licence. This was SO hard, I loved driving, I loved my motorbikes, it's one thing deciding not to drive but to have the choice taken away from you is on another level.
The winter had been very hard, I don't really like being in places where there are a lot of people, I am paranoid about catching a cold so I've been pretty much hibernating. I have visits from friends and family, I like to see people. Unfortunately my speech is quite weak, I can't always make myself heard and it can sound a bit slurry, like I'm drunk so for the first time in my life I don't always say much. I like Lesley to be with me, I know she sometimes feels she's a bit of a gooseberry but she knows what I want to say so sometimes I look to her to finish my sentences for me.
I did venture out a couple of weeks ago though, when we held a fundraising quiz at the local golf club, organised by my 3 sisters we managed to raise a whopping £565. It was lovely to see so many friends and family in one room and I've been told to announce on here that the winning photograph of the day was taken by one of the driving examiners from the Bedford Test Centre, they will receive their prize of a £25 M & S voucher.
That's it for now, hoping to do some more fundraising soon. Thank you to all of you for supporting us we couldn't do any of it without you.