Next month apart from it being my birthday, it will be 14 months since I was diagnosed with this cruel condition. It is now progressing, even the simplest of tasks are becoming increasingly difficult for me now. Such as going to the toilet, I can’t do it on my own anymore.
I constantly feel frustrated and bored sat in either my wheelchair or the riser recliner which is on loan from the MNDA with very little or nothing to do. I sleep in the riser recliner because it seems to be the only place I can get some significant sleep. Even the hospital bed is uncomfortable. And my neck is getting weaker.
But here’s a fact about MND and that is a person has a 1 in 300 chance of developing it and it had to be me. I have suffered more than enough tragedy in my life, I couldn’t even have the good fortune of there being a cure
As ever, lots of love
More often than not when we go into Leeds, we can get on the bus with no problems whatsoever, there are a minority who seem to think that pushchairs have more priority than wheelchairs even when asked by drivers to allow my wheelchair on the bus. And there are the complete pig ignorant who won’t even walk a short distance just so I can’t get on the bus. There’s one couple in particular who have been allowed to leave their pushchair up even when there is no room on the bus with my wheelchair and if they get on before us, we are not allowed on the bus at all, even when they are only getting off on the estate. They were on the bus after us and she made a snidy comment while staring at me that she was “surprised the driver allowed them on the bus”. I cannot talk and all I wanted to do was scream at the ignorant cow that I can still hear them and does she think I like being wheelchair bound when I used to be so fit and healthy. One day I will have my phone and speaker fully charged and I will say it to her just to show her up for being so ignorant.
Lots of love
In the early hours of last Thursday morning, I was shocked and saddened to learn that the presenter and broadcaster, Dale Winton, had passed away at the premature age of 62. This came after I had a near fatal choking fit in Leeds Train Station on, of all things, 5ml of Buttercup Syrup. I hate the bloody stuff anyway but I won’t be doing that again.
I have to admit, I watched Supermarket Sweep when my daughters were young and I was a full-time Mum. I often thought I would like to go on the show. Maybe not now if they brought it back. The presenter and broadcaster came across as such a lovely, friendly person and nobody should even care about whether he was gay or not. Whatever he did in the privacy of his own bedroom and with a consenting adult had nothing to do with the media. It always infuriates me how the media go on about familiar people’s sexuality when the public don’t give a toss!
So wherever you are now Dale Winton – I hope you hear the beep in heaven’s supermarket sweep – RIP.
Lots of love
The more obersvant among you will notice I have been very quiet lately, this is because I haven’t been very well recently with, as most flippantly put it, a cold. Coming on top of my MND and the problems that in itself brings with it, it has felt at times a lot worse than a cold and the coughing resulted in me sleeping in my wheelchair at night for fear I would choke on my own mucus and saliva. It is easing a little now and last night I slept in bed for the first time in over a week. I am also now wearing an adult bib for the saliva, just until I get a new medication to help with the excess saliva.
We still live in hope but it won’t help MND sufferers of today with the breakthrough which was announced recently http://www.bbc.co.uk/news/health-43838545 This won’t help sufferers at this moment in time but it is one step nearer for the future to be a little more positive that Motor Neurone Disease can be controlled or even slowed down to a halt in the future.
I have at times over the last 10 days felt so tired and exhausted that all I have wanted is to go to sleep and never wake up, even to the point of feeling envious of those who have passed away. This is the dark side of MND and probably any other terminal illness but these thoughts and feelings are getting less and less as I feel a little better.
I would love nothing more than to have my pre-MND life back again, to enjoy food and drink and walks in the park and even endure the Monday morning blues as a new working week begins. This leads me on to reveal another decision I have made in that I am now totally reliant on Peggy for my nutrition and feeds. I still have pureed meals but unless I am not tired, I will be completely tube fed from now on. And I am in the process of making advanced decisions about my future care which had a close friend of mine in tears.
All my love,
In the opinion of my MND nurse, my MND is progressing slowly. It’s good for my survival expectations and definitely good news for my husband and my daughters who are, without a doubt, my main carers.
However slow the progression, I have today taken the next step because I recognise that my husband and my daughters need a break from their caring responsibilities. So, upon a referral from my MND nurse, Tim and me went to a drop-in session at St Gemma’s Hospice Day Centre. It was a very emotional visit for both of us but it was a positive step in the right direction and the staff were absolutely wonderful.
I just have to wait for an assessment at home and then a place to become available at the Day Hosice. It will give Tim and my daughters the much needed break they all need safe in the knowledge that I will be well looked after and cared for.
It’s a year ago today that I was dealt the devastating blow when I received the diagnosis that I have Motor Neurone Disease (MND), although it is 16 months since symptoms first began. The doctor was right, I wouldn’t remember his name and I don’t remember his name although I do remember that he was due to take part in the London Marathon for the MNDA. As in the words of a Duran Duran album track, “a year of Sundays seems to have drifted right by”.
We’ve just got back home from a jaunt out to the White Rose Centre on the outskirts of Leeds, nothing new there, I like to get out and about during the day. However, all I keep thinking about is this time last year. I finally got to see Dr Idrovo, a neurologist at the Leeds General Infirmary on the 3rd April 2017. He decided to carry out tests as in-patient. Before my appointment, I walked to Oulton and back with my beloved Oscar. A round trip of roughly 5 miles. Little did I know that the slur in my speech back then was a degenerative disability with a significant shortening of life and that walk was to be the last time I would walk a few miles.
I was admitted into hospital on the neurology ward on the 4th April 2017 for what I thought was an overnight stay which turned into over 3 weeks. Before I was diagnosed with Motor Neurone Disease, I read the awareness material in the day room and I suspected I had Motor Neurone Disease. It did not lessen the shock and grief I felt when I was diagnosed and the shock my family felt when I was diagnosed, especially considering that the type of Motor Neurone Disease I have has an on average shorter life expectancy than the others. The anniversary of being diagnosed is still some eight days away.
I have gone through my own grieving process. Anger, denial, depression, alongside emotional lability and hope, hope that this terrible disability could be cured. Although I can walk with the aid of a Zimmer frame, I spend a lot of time in my wheelchair because I feel much safer in my wheelchair. I found inspiration from the late Stephen Hawking and I too have carried out a small gesture to the homeless by donating my old coats which I no longer wear to the St George’s Crypt in Leeds for those who need them more than me and will get some use out of them.
i still live in hope that the world will be free from MND, whether this will ever be in my lifetime, remains to be seen but I do pray for this to happen because I’m not ready to give up on my life just yet even though the simplest of tasks are getting difficult to carry out now.
As ever, lots of love