Heartache and tears

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…

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Lady and the Power Wheelchair

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…

Laugh and the world laughs with you, cry and you cry alone.

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…

Motor Neurone Disease and Depression

My wife’s diagnosis of MND has been incredibly difficult on me personally; I can’t deny that I have cried more than a few tears since the day the doctor delivered the life changing news in April of this year. The most difficult times for me are the nights when I am laid in bed with Angela who is fast asleep at my side.  While I am laid there gazing at the walls, that’s when the thoughts start to creep into my mind and I start to think about the day when she will no longer be sleeping by my side.

I try not to think about that day, but it’s hard not to because I know that it is coming, that’s when the emotions begin to take over and a tear comes to my eye. It’s the silence of the night that I find the worse, I have many times had to get up and go downstairs to watch television just so I can hear some noise and feel like I am not alone. There is so much that Angela and I wanted to do together and places that we wanted to go visit, now it’s feels like we will never get to do all of those things and it’s a race to pack in as much as we can into the time we have left to be with each other.

Angela said to me of her diagnosis that “I am been punished” I too feel like I am been punished for falling in love, it’s like someone is looking down on me and saying “you will never find everlasting happiness”. I have travelled down the road of depression many years ago, as have many others before me including non-other than Sir Winston Churchill who speaking about depression which he referred to as his Black Dog once said “I don’t like standing near the edge of a platform when an express train is passing through. I like to stand right back and if possible get a pillar between me and the train. I don’t like to stand by the side of a ship and look down into the water. A second’s action would end everything. A few drops of desperation.”

Although at times I do still feel the presence of depression I refuse to travel down that road again and I will keep looking at the positive things that have happened in my life so far such as marrying the woman that I fell in love with and whom I adore so much.

 

 

 

Here comes the bride

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The newly weds, Mr and Mrs Gates, 26th August 2017

The 26th of August is a date that will always stay with me because it was the date when I married for the first time. This wedding had been planned for over a year and we were both looking forward to the big day. As the day arrived Angela made her way to the town hall accompanied by her daughter Victoria, who by the way, had arranged for a Rolls Royce to convey us to the wedding venue and then back to the reception hall.

Angela’s other daughter Hannah did most of the catering for the reception so she went over to the Oulton Institute early to drop off the boxes of food ready for our arrival, both Angela and I thank them both for the hard work that went in to making this day a success. The media was there to record a follow-up story for Calendar, a photographer for the Yorkshire Evening Post was also there taking photos during the ceremony. Angela used the tablet which has speech technology installed on it to speak her vows for her, however, Angela wanted to try to speak herself if she could.

It was an emotional ceremony and we could hear the sound of Angela sobbing in the other room, but there was not anyone there that did not know of Angela’s diagnosis of Motor Neurone Disease and the battle she has with emotional lability.  The emotional lability means that Angela has issues with controlling her emotions at times and may laugh or cry at the most inappropriate times.

We all stood for the bride to enter the room the music began to play, the flower girls and page boys entered followed by a tearful and sobbing Angela who was holding on to her dad, David’s arm, she was looking as beautiful as ever. I hate to see her so upset and the sight of her crying upsets me. Angela knew beforehand that she may struggle to maintain her emotions on the day. As they entered the sound of the Pet Shop Boys song “Heart” filled the room

As we sat down at the table and the ceremony got under way with the registrar reading out the vows gradually the tears began the cease and a smile took the place of the tears. Angela had pre-typed her response to the registrar’s questions on the tablet. We talked it through and I knew Angela was going to try to say part of the vows herself.  I have to admit that I had to struggle to hold back the tears when she spoke the words “I do” in her own voice. After the ceremony, we both signed the registry and we became husband and wife. It was an emotional time for us both and it was played out in front of the television cameras, but we got through the day and we now begin our married life together…

 

What is Motor Neurone Disease?

 

Motor Neurone Disease is a heart-breaking condition that affects an entire family and for which at the time of writing this blog there is no known cure, when one is first diagnosed with this dreadful illness it is as if a bolt of lightning has suddenly emerged from what were clear blue skies to strike at the very core of one’s heart with all the force of a nuclear warhead. Subsequently those clear blue skies are gone and all you are left with is a darkness hanging above one’s head, much like the fabled sword of Damocles.

 

There is at present around 5,000 people in the United Kingdom who suffer from this horrendous condition with new cases diagnosed every single day. Motor Neurone Disease is classed as a rare condition, We are aware that there will be people out there reading this blog that have no understanding of what Motor Neurone Disease actually is so let me try and elucidate.

MNDs roots lie in the early 1800s when Sir Charles Bell made the discovery of the sensory nerves and the Motor Nerves, but it was not until 1874 when French physician Jean-Martin Charcot, a pioneer in the field of neurology made the link to a group of conditions which affect the nerves in both the brain and the spinal cord; this condition later became known as Amyotrophic Lateral Sclerosis (ALS) /Motor Neurone Disease (MND). In the human body we have what are known as Motor Nerves these nerves carry the electrical messages to the muscles that allow said muscles to contract, in our daily lives we tend to move around a lot and we tend not give a second thought as to how this occurs.

With Motor Neurone Disease the motor nerves begin to malfunction to a point that they eventually stop functioning hence the electrical messages are no longer sent to the muscles and because the muscles are no longer receiving these messages over time muscles become weaker and eventually muscle wastage begins to occur. Motor Neurone Disease is not one condition it is a title that is given to a group of diseases; these diseases include Amyotrophic Lateral Sclerosis (ALS, Progressive Muscular Atrophy (PMA), Primary Lateral Sclerosis (PLS) and Progressive Bulbar Palsy (PBP).

The most common form of Motor Neurone Disease and the one that most people may be aware of is Amyotrophic Lateral Sclerosis of because of Professor Stephen Hawking who was diagnose with this form of Motor Neurone Disease in 1963 at the tender age of just twenty-one and at that time was given a prognosis of just two years life expectancy, Professor Stephen Hawking has so far defied the odds and is still with us today at the age of seventy-five.

However, I digress from the reason for writing about Motor Neurone Disease, In April 2017 the woman of whom I gave my heart and soul to was diagnosed with the form of Motor Neurone Disease known as Progressive Bulbar Palsy (PBP) with PBP it is the stem of the brain that is affected as well as the nerves associated with the bulbar muscles, the bulbar muscles are what we use for swallowing, eating, chewing and speech. As a result of this speech is slurred making it somewhat difficult to understand and swallowing food can also be troublesome which can result in choking so a person’s dietary requirements have to be adjusted to accommodate this.

Progressive Bulbar Palsy also tends to cause issues with the breathing muscles, this means that the breathing muscles become weaker and allows for a build-up of Carbon Dioxide in the body which as we know is unsafe so regular checks are performed to monitor the increases in Carbon Dioxide levels, but unlike Amyotrophic Lateral Sclerosis, Progressive Bulbar Palsy does not tend to affect the limbs although over time Progressive Bulbar Palsy can turn into Amyotrophic Lateral Sclerosis which does.

We were advised by the hospital to watch for signs that Carbon Dioxide building in her body these signs include headaches in the morning and feeling sleepy during the day, if we notice any of these signs we have to contact the hospital, of course this could be something simple like she is just tired, but in my option it’s better to be safe than sorry. Sadly the life expectancy of someone that has Progressive Bulbar Palsy is between Six months to Three years.

Motor Neurone Disease destroys lives; it is a little known disease that has such a big impact on a family. More money is needed to not only help fund research into the condition that will one day vanish this horrible disease once and for all, but also to help families who suffer from Motor Neurone Disease. If you wish to help you can help by making other people aware of the condition or you can make a donation to the Motor Neurone Disease Association