Recently diagnosed with Motor Neurone Disease, this is my own personal account of how I cope with the every day trials and tribulations of life.

A Mother Cries

This is such an emotional piece and made me cry xxx

Daughter of MND

Mum and I were lucky enough to be invited to the Motor Neurone Disease Association’s parliamentary reception, which was held on Tuesday in Westminster.

We haven’t really been involved with our local associations, although this is something I intend to change. We didn’t expect to be invited, but thanks to all the coverage Mum’s wedding achieved, we were issued with an invitation.

It was a daunting prospect for Mum. I can only think of one other person she has met with MND. Part of her coping mechanism is not pondering on the disease too much. She focuses on everyday life, and things that make her happy. She doesn’t ignore the disease, because you can’t, but she puts it to the back of her mind and puts her best foot (in her case, her right one) forward and carries on.

So it was always going to be difficult. How can it…

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I never had myself down as a speed demon or a driver

Daughter of MND

Do you remember Boro Pat? It was a mildly offensive video on YouTube that was popular a few years ago. It featured footage of Postman Pat dubbed with very colourful language. We thought it was hilarious.

We’ve started making a few references to that silly video recently – mainly the bit when Postman Pat goes charging around a corner in his bright red van. Because now Mum has an electric wheelchair, we know she is a menace on the road. And it still makes her laugh.

My partner’s parents kindly bought the chair as a wedding present for my mum. I know they will read this post, and I know how often we have said thank you, but I have to say it again, because we are so immensely grateful for the gesture. It changes everything.

Mum’s NHS wheelchair wasn’t fantastic, but we made do. What’s the Latin for ‘we…

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A Little Break

This time last weekend, we were on a little break visiting my eldest daughter, Victoria and her partner James.  We met James’s family who are my benefactors and bought me the power wheelchair which I use at home.  I love Victoria and James’s flat.  It is on the ground floor and, with the exception of two steps to the front door, which would be an issue if I lived there, there is so much space to move around.  It is clean, light, bright and airy.  They have a tiny yard from their guest room and an en-suite in their bedroom.  They kindly gave up their room so that we were comfortable and they slept on their sofa bed.  I always feel as if I am a burden on everyone now that I need to be cared for to some extent and last weekend that is how I felt.   I know how tiring being a carer is, after all, as a Learning Support Assistant, we are carers for our learners and I only was with the learners a few hours a day and I got tired.

We went to the Natural History Museum on Sunday and London Zoo on Monday.  I was also down there to attend a MNDA Parliamentary Reception on Tuesday with Victoria which I found very emotional, partly because it brought it home to me that since the diagnosis of MND six months ago, it is still raw and attending the reception means that this is real.  I am not going to wake up and find the last six months have all been a bad dream.  I wish it were.

I wrote on the journey down to London and Sidcup about how I feel about MND and I hate it with every fibre in my body.  I just wish with the advances in science and medicine that a cure can be found.  This is even more poignant when I learned on Thursday that MND has resulted in the gentleman I have been chatting to on messenger losing his Dad to the disease following the diagnosis in August and it is heartbreaking to know that MND claims lives all too quickly and, in some cases, prematurely.

I digress, the visits to the Natural History Museum and London Zoo were brilliant.  I loved every minute although I found the rush hour in London quite stressful.  The Parliamentary Reception which focused on the financial impact of MND on sufferers and their families was an emotional event.  One man has had to appeal to the Department of Work and Pensions (DWP) to receive his Personal Independence Payments (PIP) so many times and each time they reassessed him, his score was lower which meant that, in their opinion, he was getting better.  MND doesn’t work like that, there is no cure.

The patron of the charity, Charlotte Hawkins from Good Morning Britain and Strictly Come Dancing attended and gave a moving speech about her involvement with the charity.  Her Dad battled MND for 4 years before losing his battle in 2015 before her daughter was born.  She was very emotional during parts of the speech and I just cried an awful lot.  Victoria and me had our photo taken with her and she signed my Diary for me. I hope there is some progress and that the DWP stop the reassessment of sufferers with MND because we have enough pressure to deal just battling the disease without the added stress of proving we are terminally ill.

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Charlotte Hawkins, Victoria and myself – Tuesday, 17th October 2017

That aside, apart from one near fatal choking incident on the Monday morning, all in all, it was a great few days in London and Sidcup and I want to thank James, Victoria and James’s family for making us feel so welcome and very much at home, relaxed and stress free.

Angie xxx

Six Months

How has that happened?  It was six months ago today that my life changed irrevocably and forever.  I was given the devastating diagnosis that I had Motor Neurone Disease.  I have been on an emotional rollercoaster as a result of this diagnosis but, to date, I try not to allow it to rule my life. I don’t want it to rule my life.  Obviously, I have had to adapt to a new way of life but I still get out and about, albeit in a power wheelchair now and I am managing to eat as well as using my PEG to top up my calorie and essential nutrients intake.  I also manage to drink, even though I have to have thickener in my drinks to reduce the risk of choking or my drinks going down “the wrong way”.  I do miss normal food and drink but if it means that I can eat virtually as well as I was before my diagnosis by having my food blended and my drinks thickened then I am slowly coming to terms and accepting this.

There are others who have not been so fortunate.  I chat online to a man whose father was diagnosed with Motor Neurone Disease in August despite his timeline with the symptoms being very much on par with my own.  His father has now been moved to a hospice and my heart goes out to him and his family.  I haven’t mentioned him by name just in case he didn’t want me to.  I so hoped that by chatting to Victoria and me, his father might have received all that I had but, nothing more can be done for him which has saddened me.

I am attending a Parliamentary Reception next Tuesday with the MNDA and I am looking forward to it.  The theme for the reception is the financial impact MND has on the sufferer and their families.  To date, had it not been for the kindness and generosity of Victoria’s partner’s parents, I would have had to wait for a NHS power wheelchair.  Their kindness and generosity means I have a power wheelchair so much quicker than waiting for the NHS.  Don’t get me wrong, I love our NHS and I need them so much right now but when you have to wait for things or it’s a post code lottery as to the treatment you receive, I do find it so frustrating at times.

I cannot fault the care I have received but as for the poor gentleman who was diagnosed in August, it seems to me that the NHS have dragged their heels with his diagnosis and treatment and that is one thing you can’t do with MND.  The NHS and all healthcare professionals need to remain one step ahead of this cruel, horrendous, degenerative disease.

I have to thank my daughters, Victoria and Hannah for their continued love, support and care for me and, of course, my husband, Tim who bears the daily brunt of my care and my temper when things don’t go according to plan or I lose my temper because of the way he attempts to do those daily tasks I took for granted.

Despite some bad days, I have had many days out and many more I hope to look forward to because there is one thing, the odds may be stacked against me but I do not intend to give in to this horrendous illness just yet and I try to keep smiling and laughing.

Angie xxx

I know I have taken my health, my life and my friendships and relationships for granted at times.  Don’t! You never know what is around the corner and how life will affect you and if I could turn back time to when I was healthy and well and slim again, I would.  I dare say things would be different in that I probably would not be married to Tim but I would stand up for myself towards a certain person doing as he pleased, when he pleased – although less said on that the better.

It also works for family members.  I have one in particular who is hell bent on ruining everyone’s lives and blaming all his family for his ostracisation from the family when he was the one who cut all ties.  He has lied to near on all of us over the last 8 years to the point that I did not invite him to my wedding and he has let everyone know how he has felt about that.

I had good reason not to invite him to my wedding, I did not want him there.  His narcissistic lying is enough for me not to want or need the hassle in my life, I have enough to be getting on with managing my MND without putting up with him and the same can be said for other members of the family he has upset.  None of us are interested in meeting up with him as he is demanding, none of us want to.  He won’t let it rest.  He wrote to me, a four page letter and not once in this letter did he direct his apology towards me or ask me how I was? He knows I have MND but he thinks it affects my ability to think for myself and make my decisions, little does he know that MND does not affect that side of my brain functioning.  I am still as clear and lucid today about the reasons I do not want him in my life as I was when it first happened.

As I say, don’t take anything for granted because nobody knows what life has in store and what is around the corner not any one of us.  I do know what my life has in store and I am afraid of the end game with MND, there is no doubt about it.  This part of my illness terrifies me because I don’t know when it will happen or how rapidly it will happen.  The outlook with my type of MND is 6 months to 3 years, I would love to have longer but if I do not then so be it.  However, I will fight my MND every step of the way but as for my estranged brother, I am not fighting with him, I just do not want anything to do with him. He chose that path, not me or my brother and sister who he hurled abuse at and lied about, that’s his life choice not ours and he can stick with it.

Angie

When I am sleeping, MND goes away, it gets thrown into the far reaching corners of the universe where I wish it belonged.  I know it has progressed a little bit and my speech and swallowing are somewhat compromised.  The top of my left arm, above my elbow and my left ankle and foot are the weakest parts of my limbs.  My right side still remains strong and I still have movement in my hands and fingers.

I have a PEG feeding tube fitted which I use for medication and for the occasional feed.  My diet has had to change in that I have to have thickened drinks for ease of swallowing and a soft to mashed diet so that food is easier to swallow.  I do sometimes flount this because I get stalled off with eating the same food over and over again.  That aside, that is the progression of my MND in the five months since I was diagnosed.

When I am asleep, I probably dream but I don’t remember them but I don’t have MND, I am my old self again, normal, healthy, happy and well.  I can walk my pug, Oscar and I can go to work and do all the things I enjoy without any difficulties at all.

I want MND to be nothing more than a bad dream and then I wake up, but even before I speak my first slurred words of the day or drink my first thickened drink, the stark reminder that MND lives with me is the PEG. Two months I have had the PEG now and, it is making some aspects of life easier, even if I still don’t like the changes I have had to go through.

It has been a difficult few months for everyone, especially my daughters and my husband, Tim.  I was the Learning Support Assistant and I supported students with varying degrees of disabilities both in and out of the classroom and now the Learning Support Assistant needs all the support I used to give.  My family and friends have been amazing and with them, I can live life better than I ever initially thought when I was diagnosed.

Long may we stay well and healthy and keep going because when I am asleep I can shout at you all and tell you all, “I love you”.

Angie

Blackpool for the second time this year, only this time, we had better weather.  We couldn’t have asked for the weather to be near perfect.  Sunny, warm and not much of breeze (unlike when we went in June and it was blowing a gale up the Golden Mile).

We don’t do the tourist things, so Blackpool Tower is a no, no.  The Pleasure Beach would be a complete waste of money and going on all three piers would just result in us sitting there and staring out to sea.  What we did do was soak up the sun and walk the Golden Mile.  Well Tim walked and pushed me in the wheelchair and I sat there like Lady Muck getting my vitamin D.

We walked from the North Pier to the Pleasure Beach, stopping for a bite to eat, I had a supplement through my PEG, and every now and again, Tim would stop while I was watching something that had taken my eye.  The para gliding from a crane was one thing I found fascinating and kept saying, “I would do that”.  When we finally got to the gates of the Pleasure Beach, I was fascinated to watch the Pepsi Max but I definitely would not go on it.

I remember the days when there was no entry fee to the Pleasure Beach and off you toddled and got on some amazing rides, it’s now an attraction in its own right in Blackpool and they milk it for all it’s worth.  The heritage trams as they’re now known are also an attraction which run along the tram lines with the modern trams (I don’t like the modern trams, they’re just not Blackpool).  It had to be done, I wanted to get on the open top tram and we waited 40 minutes to get on but even that was an achievement in itself for me.  I was helped on to the tram by Tim and a complete stranger.  A lovely lady helped me get on.  We went back to the North Pier and getting off was also an achievement in that Tim was going to lift me off but I ended up getting down on my weak left ankle first with my strong right ankle still on the tram, I thought that I was going to fall at that point but, somehow, I got down.

Despite that and Tim having fallen before we even got off our street, we had a great day out.  Tim won’t go up Blackpool Tower, he’s a fear of heights.  Bless him.  It can’t be easy living with that fear when you’re 6 ft 3 (or is it 4).

We forgot about MND for one day and it made a difference, we caught the sun and had a good day out.  The sea air did us both good and we can look forward to our next trip out, if and when we get some nice autumn weather.  I haven’t given up hope of a few more nice days before the nights really draw in and winter looms.

Angie

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