I am not the best writer in the world and my sight causes many problems when doing something like this, but I have put pen to paper and wrote a short story or our lives and our battle with MND. All profits from the sale of the book goes to the MNDA
This is only a short update due to health matters and the fact I’m lied on the bed dosing while I’m writing this. It’s been over a month since I last wrote anything, I have been busy trying to do my writing and there hasn’t really been anything new to report with regards to Angela’s condition, today we went to the MND clinic for Angela to have her check up. Her breathing is still strong and the carbon dioxide levels are lower than last time she had them check a month ago.
I am going to the hospital myself next week for my Glaucoma to be checked because I have been struggling with my vision for the last few weeks, it does have me worried because glaucoma can take your vision if it get out of control, I know it is down to the stress, but there is literally nothing I can do about that. I’ll see next week what the hospital says about it…
It has been an emotional time over the last seven months, there has been both laughter and many, many tears from both of us.
Angela has been very emotional over the last few days and has at times reduced me to tears with such morbid talk of the end of her life.
We know that day will come and nothing short of a miracle will change that now, and it is that which makes the pain more intense knowing that there is nothing that can be done
With other diseases such as Cancer a person has a reason to fight because there is a chance that it can be treated if it is detected at an early stage.
Thirty years ago HIV was considered a death sentence to anyone who contracted it, now there are drugs that can extend life by many years.
However, with MND as of yet there is no such treatment available, research is ongoing and perhaps one day medical science with have that breakthrough and find a cure for this horrendous condition that rips apart the lives of so many people.
I have tried to keep my mind busy by returning to my studies, but the feeling for it is not there any more, I have spent the last fifteen years perfecting my trade and have picked up over twenty certificates during that time with the final one being my Bachelors degree.
All of them mean nothing to me now, even my dissertation, which I never liked anyway, Angela herself will tell you what I said to the tutor at the viva interview after I wrote it.
I would trade every single one of them just to have Angela well and by my side so we can grow old together…
Well it’s the 5th of November and once again the annual event known as Bonfire night has arrived, many will already know the history of Guy Fawkes and how he came to be embroiled in one of the most deadly attacks that the United Kingdom has faced, but for those that don’t let me try and elucidate. Guy Fawkes was born in April of 1570 in the town of York where he was educated at St Peter’s School. His father passed away when he was only Eight years old and left his estate to his son. When he turned 21, Guy Fawkes went to fight for the Catholic Spain; there he adopted the name of Guido Fawkes,
He was drawn into the plot, orchestrated by Robert Catesby, to blow up the Houses of Parliament and in the process assassinate King James I on the 5th of November 1605. Why, because of the suppression for many years of the Roman Catholic faith dating back the rule of Henry VIII who broke away from the Roman Catholic church because of the Popes refusal to grant him a divorce.
Many had assumed that after the death of Henry the VIII’s daughter Queen Elizabeth I on the 23rd March 1603 that her successor King James I would be more lenient towards the Catholic faith, but that wasn’t to be the case. Fearing there was no other way Robert Catesby, who was an English Catholic, conspired to commit treason and blow up the Houses of Parliament while King James and the Prince of Wales were in attendance. After the discovery of the plot to blow up the Houses of Parliament
Catesby fled to Staffordshire where he eventually died on the 8th November 1605 after the house in which he was hiding was surrounded and a gun battle commenced, it is believed that Catesby died clutching a picture of the Virgin Mary in his arms.
Anyway, as a child I used to love bonfire night, collection wood with my friends to burn on the night, building the Guy out of old clothes. As I got older though bonfire night lost its appeal and now the only reasons I still like bonfire night is that it’s the one night of the year that one can legally burn all the rubbish that we have gathered throughout the year without getting a huge fine.
We see all the young children laughing and so excited when bonfire night comes around as they sit and watch the fire burn with a toffee apples in their hands while watching the fireworks going off, the adults are excited too, but that’s mainly because they managed to get rid of that old sofa that has been stuck in the garden for the last six months.
It is nearly Christmas and this year has just flown by, since Angela’s diagnosis of MND it has been like one long day, the days just seemed to turn into weeks.
There are little changes to Angela’s condition, her swallowing is a little worse and her speech is more slurred, also she is using the wheelchair more and her emotions are very unstable which gets to us both.
We still manage to go out for the day though and try and take our minds off of the MND for a while, because it upsets her and it really hurts me to think of a future without Angela in it, when the emotions start to get to us we just get ready and go out anywhere, we had a minor issues while on a trip to Sheffield with the power wheelchair a few days ago.
When we boarded the train Angela was sitting in the chair, which was parked in the disabled bay, I asked Angela if she could turn the chair around when we neared Sheffield so we were ready to drive straight off of the train.
When she pressed the power button to turn it on we saw a flashing red key indicating that it was locked, we didn’t even know that it had a lock.
I had to pull Angela and the chair backwards out of the bay and then turn the chair and push it down the ramp in manual, with no power there is no breaks, so it was a struggle to hold it back, the chair is very heavy without anyone sitting in it, so you can imagine what it was like trying to hold back Angela and the chair going down a ramp.
After disembarking I placed a call to Invacare who makes the wheelchair, they said that this version of power wheelchair has a magnetic lock and we needed a magnet to unlock it, i don’t know about anyone else, but a magnet is the one thing I don’t carry around in my pocket, I have plenty of rubbish in them, but no magnet.
We set off into town in search of a magnet, pushing that chair with no power is like trying to push a car with the break on, that is the one downside of this power wheelchair, when the power goes you are basically dead in the water and of course the town had to be up hill didn’t it.
Half way up the hill a gentleman who was handing out religious flyers came to our aid and used the magnet on his bag to unlock the chair. I have ordered a magnetic key now for next time, Something triggered the magnetic lock while we were on the train and we don’t want to be stranded like that again.
Sometimes It is like a comedy of errors when we go out, Angela can’t speak and I can’t see, between us we have two thirds of the three wise monkeys. But we always manage to find a way around any problems that come up.
So, a word of warning to anyone thinking of purchasing the Invacare power wheelchair with the DX control system, you should also think about buying a magnet at the same time…
Angela speech is almost unrecognisable now and she relies on the application that she has installed on her phone called “speak for me”, or should I say that she uses the application that I have installed on my iPhone, which is called “Talk for Me Text to Speech”, because she keeps draining the battery on her phone playing games.
The application Talk for Me Text to Speech is an excellent piece of software, it was designed by a gentlemen who had lost the ability to speak, and it is free to download in the App Store on iPhone for anyone wishing to download it.
Angela simply types in what she wants to say and the app speaks for her, the problem is that the sound on the phones is limited and when we are out in the town it is hard to hear what she is trying to say.
After reading Victoria’s blog about the issues they had at the parliamentary reception with not being able to hear what Angela was trying to say, I came up with an idea that may help, I am sorry I did not think of it sooner though.
I purchased a portable Bluetooth speaker from Amerzon which fits in the palm of your hand; I connected it to her phone and then placed it on the windowsill halfway up the stairs, Angela can type anywhere in the house and I can hear her.
It will also go behind her seat when we go out in the power-chair, which is now known as Chuggabug in honour of Wacky Races.
There are other ways of doing it, such as Bluetooth headphones for instance, but that is limited to only one person been able to hear at a time, and I have to think about the times when Angela’s daughters Victoria and Hannah are out and about with us.
I had intended to wire the house with sound, but I have had to hold off on doing that until we move home, which the council seem to be taking their time over.
For every problem there is a solution if you look hard enough for it, for Angela though there will never be anything better than having the ability to speak with her own voice, but for now this will serve its purpose.
The hospital said that at some point when Angela’s movements are limited they will give her eye tracking software to communicate, the main thing is that she will have a voice throughout, even if that voice is not her own…
Emotions play a huge part in our lives, without them we would be nothing more than cyborgs. I am not ashamed to admit that I am a very emotional person.
Sometimes I do find it difficult to remain composed when I see others cry, Angela cries every morning and it does get to me, any person would feel emotion when the see the person they care about most in this world in pain.
Angela and I have been through so much together, no matter what was thrown at us we have stood together and never let anyone or anything tear us apart, and now some little known disease called MND is going to do what no one else ever could and I am scared for the future.
The thought of having to live my life without her is terrifying me, she is the only woman I have ever loved, she is all I have left in this world since my mum passed away and for this to happen now so close to that hurts so much, i just wish this horrible disease would go away and never return, but that is not going to happen.
I don’t like fighting or arguing, life is to short for that, hug the person you care about and tell them you love them because you never know what is around the corner, it can all be taken away so quickly…