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.

Hunting

No, I’m not about to take up Fox hunting or any other kind of hunting for that matter.  I abhor cruelty on any level, so it’s not for me.

My partner and I are getting married in five weeks time.  I know, I can’t believe I’m doing it again for the second time.  You would have thought I’d learnt my lesson the first time around.  However, given light in what we’ve all been through over the last three months, it is going to be a poignant occasion as well as a happy one.

My speech is barely understandable to anybody now, although I can still hear my own voice in my thoughts and in my writing.  I am going to have to say my vows via my iPad or my partner’s tablet, so these will have to be put in either or both before the big day.

We’ve got to pick the music and book somewhere for our reception afterwards and with approximately 40 people on the guest list, they all might not fit in the room we’ve booked at the Town Hall in Leeds.  This in itself is such a grand location for a register office ceremony, I actually wish it had been the location I got married to my ex-husband all them years ago.

Leeds Town Hall

A grand location for a wedding!

I digress, so my youngest daughter, Hannah, mentioned a wedding reception afterwards. “Doh!” As Homer might say (that’s for my partner, he’s always quoting The Simpsons, Family Guy or American Dad), we hadn’t even thought about, organised or arranged a wedding reception afterwards for probably about 50 guests let alone decided where we were going to have a reception.  The house and the back garden are an absolute no.  Victoria and Hannah organised what was meant to have been a surprise birthday party for me at our house and that was fine but a wedding reception with the possibility of 50 guests, absolutely not, they won’t all fit into this little, piddly house.

So, this morning, Hannah, Tim and me set off to hunt my local area for venues where we might possibly be able to hold a wedding reception and considering the big day is five weeks away, we might be lucky if we can book any of them let alone arrange the reception.  We might end up having the wedding reception in a car park or a field!

I hope not!

Onwards and upwards!

Angie

Frustrations

Without a doubt, since being diagnosed with Motor Neurone Disease, I am becoming increasingly frustrated with even the simple things I used to take for granted, for example, asking for anything and boarding public transport. Prior to my diagnosis, I was active.  I wasn’t as fit as I would have liked to be but I could do things for myself without having to rely on support as I do now.

MND has already significantly compromised my ability to talk and swallow and my left arm and left leg are weaker than my right.  It is difficult slowly becoming trapped in your own body because my mind is still very much active and alive. I still hear the sound of my own voice but when I talk it is this slurred and nasal sound which comes out.  I still want to eat and drink but when it comes to meal times, they are long and protracted and drinks have to be thickened so that I can swallow them safely.  I am still mobile despite the weakness in my left arm and left leg.

I have had some wonderful days out with support from my partner and my two daughters but, occasionally, even a trip into Leeds can prove frustrating as was the case last Thursday.

I am now on antibiotics and have foam dressing around my PEG site which has developed an infection.  I was told that this may happen, after all, it is not a natural way to receive nutrition.  It has felt sore and I have been on pain relief for it.  However, along with the emotional lability, it can leave me feeling a bit vulnerable and the emotions run away with themselves.  At least this time I was crying for a valid reason.

Having been refused to go on the trams in Manchester when my daughters and me went to Pugfest on Sunday (16th July 2017) because we had our pug with us.  I didn’t expect just days later to be waiting at the bus stop in Rothwell (where I live) and be refused access to board the bus because there were two prams on and I heard one categorically state, she didn’t know how to put the pram down.

My partner posted on a public page on Facebook opening the vicious debate of who has priority on public transport, wheelchairs or prams when both passengers have equal rights but should demonstrate a level of common sense when it comes to the other.  Some of the comments were sickening and showed the true colours of those who outright refused to put their pram down in order for a wheelchair user to board the bus.  This is discrimination against all wheelchair users, not just myself.  I was upset by a lot of these comments as before I developed MND, I would give up my seat on the bus for those less able or for passengers with a baby in a pram and if the bus was a double decker, I would sit upstairs because I was able to.

However, now I use a wheelchair when I am out and about and more at the moment because of the PEG site being so sore and painful, when I was refused access to board the bus, it left me heartbroken at the bus stop.  Fortunately, I was only going into Leeds to get out of the house and not for a hospital appointment.  Had I been going for a hospital appointment, I would have no choice but to board that bus.

I received a lot of abuse on my partner’s post about this despite the fact I pointed out that I too used to use buses when my children were little and in their prams and, at that time, prams had to be folded down, irrelevant of how many children you had with you and how much shopping.  It was all in the preparation.  When you got to the bus stop, you knew you couldn’t wheel the pram on, so you took baby out, folded the pram and waited with baby and shopping until the bus arrived.  You generally had your own bag, baby’s changing bag and shopping as well but it wasn’t an option back then, you got on with it; you didn’t kick up a fuss with the driver or other passengers.  Having children is a wonderful thing but it should not be used against those less able in society who don’t ask for and generally don’t want to be disabled.

If anything, this has taught me a valuable lesson in life, there are the minority in life who do not respect your situation and they don’t care about the consequences either. We live in a society where there are those who are selfish, showing no compassion or thought for others and no thought that one day it might be them faced with the refusal because of disabilities.  I am more than happy to give up my right to board the bus if the bus is full but not because passengers with prams think they have more right than I do.

I intend to fight MND all the way until I can fight it no more.  I don’t intend to stop at home and wait for the grim reaper to come along, and if this means going out and taking up a wheelchair space on the bus, then so be it.  I have used public transport all my life and the blame for this lies squarely with the bus company who run the service where I live because they have put buses on our route that only have the wheelchair space, there is no designated pram space on this service so this vicious debate will run on and get out of control until the bus company put buses on our route that are fit for purpose.

With respect, I offer my full apologies to those who read this and are willing to make space for a wheelchair user. For those that won’t, I hope you find yourself in my situation one day and I wouldn’t wish it on anybody but then you’ll know how difficult life can be because baby won’t always need to be in a pram but a wheelchair user will always need to use a wheelchair.

 

Sore

I was discharged from hospital yesterday afternoon following another week long stay in hospital.

I now have a PEG (or to give it its full title Percutaneous Endoscopic Gastrostomy) feeding tube directly into my stomach and it is sore.  I kind of knew it would be and it was a decision I made very early after diagnosis because I did not want to be tube feed nasally.

It is taking some getting used to but I am managing to administer my medication and flush cooled, boiled water through the PEG.  I am fully aware that, eventually, it will be the only way I receive my nutrition but, for now, it is important that I get the medication as well as the nutrients I need.

It sent me on an emotional rollercoaster and I have cried and cried and cried with the occasional inappropriate laughter thrown in.  This is not what I expected nor is it me.  This is MND showing its ugly head.

That aside, I am looking forward to life with the PEG and how it should make life a bit easier including those long, protracted meal times which can take anything from half an hour to two hours to eat my food and the PEG will cut this down to 10 minutes.

The staff and the patients in my bay on Ward L17, Jubilee Wing, Leeds General Infirmary were amazing as were the MND team who have provided much needed support to my partner and my daughters.

I will keep battling with this cruel disease.

Angie

Life Changing

I haven’t blogged for a long, long time and my life has changed in that time so much.

I split up with my husband of over 20 years and consequently we were divorced two years ago after 22 and a half years of marriage.  I now live with my partner, Tim, my pug, Oscar, and my partner’s dog, Sam.

We’re getting married on the 26th August, a year after I went on my first holiday abroad to Turkey with Tim.

However, the biggest life changer for me has come in the way of my health.  I have had various health issues to deal with over the last few years, some of them women’s health issues and some of them not.  I developed pulmonary embolism in both lungs two years ago and I thought that was bad back then but nothing compared to the diagnosis I received in April.

I developed a slurring in my speech but, being so bloody-minded, did I want to go to the Doctors? Did I hell as like.  Eventually, I gave in and went to see the GP, she was rather blunt and thought I’d had a stroke which upset me even more.  She packed me off to A&E and I was referred to a neurologist.  After some pestering from Tim, I got to see a neurologist at Leeds General Infirmary in April and the next day I was admitted to the neurology ward for tests as an in-patient.

I had them all, blood tests, a MRI scan and an EMG.  I had also developed emotional lability which is a symptom where I cannot control my emotions and they seem inappropriate at the time, like laughing uncontrollably at something which probably isn’t remotely funny.

After all the tests, I was given the fateful diagnosis that I had Motor Neurone Disease, and that’s when my life changed.  I know it is a progressive and degenerative condition that has no cure, although I was immediately started on the drug riluzole which slows, although does not stop, the progression down by as much as six months.

After years of battling depression, this one is the big one, I want to get the best out of my life now.  I have difficulties with swallowing or speaking but I get around these in my own way.  I am supposed to have thickened fluids and a mashed, soft diet but I developed my motto, “Use it or lose it”.  Which is what I do.  With some careful preparation, I am managing to eat as much normal food as I can and with a bit of care, I can drink unthickened fluids so I still get to enjoy some food and drink which I loved before and would probably have wolfed down pre-diagnosis without a thought or care in the world.  Now I savour my food and drink for as long as I still can.  I know this does not work for everyone and not everyone should try it but it works for me for the time being.  So, here I am folks, back on my blog and ready to share my new chapter in my life with you all.

Angie

Unless you’ve been on the moon for the last couple of weeks, you’ll know how weird the weather has been recently.  As we rapidly approach the beginning of  British Summertime, we’re under a blanket of snow and ice in March.  So, I thought I’d share some images for you of our local park where I walk my beloved Oscar.  These were taken yesterday (24th March 2013) and the images after them were taken exactly 9 months ago in June 2012.  The illustrate exactly how strange our British weather has become.

 

Rothwell Springhead Parkl

Rothwell Springhead Park in Spring

Rothwell Springhead Park in Summer 2012

Rothwell Springhead Park in Summer

 

Unbelievable – we might get some normal weather soon.

86 Today!

BBC’s Strictly Come Dancing finished last night with Olympic gymnast, Louis Smith and his professional dance partner, Flavia Cacace winning the coveted Glitterball trophy for 2012.  I love Strictly and I think the 2012 series has been exceptional.  For one reason, there wasn’t one celebrity who took part where I had to ask myself,  “Who?”  Now it’s over for another year, my Saturday evenings are going to be a little bit dull – can’t wait for next year.

That aside, it is one of those programmes that appeals across the generations.  I know of one person, sadly not with us, who would have loved Strictly, my late Grandma.  She is still sadly missed by all who were close to her and today, it would have been her 86th birthday.  So, for those who don’t know who she is, I’ve put a special treat in this blog post.

My Grandma as a young woman

A young Grandma

 

One of the last photos of my late Grandma

Grandma Robinson

She’s never far away from my thoughts.  Love you Grandma. xxxx

Angie

 

If ever I have read anything so beautifully written and filled with poignancy for me it has to be the following blog post:

http://joannacannon.wordpress.com/2012/07/29/starry-starry-night/#comment-596

Everyone who knows me well enough now will know why this has such poignancy for me.  Thank you for writing about mental health issues in such a beautiful way.

Angie xxx

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