London Trip

Sunday the 15th of October

On Sunday Victoria, Angela and I went to the National History Museum, it is a really nice place to visit and very educational, although I would say that anyone wishing to attend plan in advance as there are long queues to get in and it took us a while to get to the front, it was a bit dark for me with my sight and I struggled at times to push the chair in the right direction.

When I am pushing the chair I use the same techniques that I used in work when pushing the cages around the warehouse, if I can see the feet of the person in front of me, then I know that I have safe distance to stop and turn, but it was so dark in the museum that I couldn’t see the person in front let alone anyone’s feet.

Victoria had to take over for that part of the visit and push the chair. Angela was amazed at the exhibits, it felt a little awkward when she wanted to go see the exhibit that showed how the human body functions such as the muscles and the nerves as that is what MND affects.

Hanging from the roof were skeletons of different dinosaurs which were nice to see, its a good job we didn’t take the dog though or they would be missing a bone or two. Angela got to hold the skull of a Dolphin and a Pygmy Hippo which she was amazed by.

I saw a life size horse in a glass cage, I am sure I have seen that horse before though, I think I backed it in the Grand National Two years ago, always wondered where the losers ended up. In all it was a nice day, but I’ll admit I was happy to leave there, not because of boredom, but because it was not light enough for me to navigate my way around…

Monday, 16th of October 2017

The day got off to a scary start because we thought we had lost Angela, she tried to eat something that she is not meant to eat and it got stuck in her throat. She was gasping for air and it was frightening to see that. I was banging her on the back and Victoria was ready to call an ambulance, but thankfully the blockage cleared and the air was getting through again.

We had planned to go to Madame Tussaud’s, but you have to give two days’ notice. It’s beyond belief that you have to give notice to go and see a bunch of dummies and pay £30 each for the privilege of doing so, we could just stand outside the Houses of Parliament for free and see the same thing.

Instead Victoria, Angela and I went to London Zoo   which was far more entertaining than seeing a load of wax dummies, it was a bit of a hike though to get there because the Zoo is in Regent’s Park and we were on foot with the wheelchair.

The zoo was really entertaining, even though some of the animals were down for an afternoon nap. The Kangaroo was on its side fast asleep, all I could see were two legs sticking out of the bushes. We went into the monkey habitat where a tiny monkey came over to us and jumped on Angela’s foot, I wanted to pick it up, but I didn’t get the chance as the poor little thing ran off after Angela kicked it.

I started Angela off laughing as we passed the Zebra enclosure, we saw the Zebra’s walking around and I said to Angela “you know what that is don’t you, that’s a Zebra crossing”. The only downside to London Zoo for me was that there were no Elephants; even with my sight I think I could have seen one of those coming.

After a few hours wandering around, we set off back home. That was another trial, we got stuck in rush hour and I was struggling with people pushing past and stepping over the front of the chair. I am struggling with my emotions since Angela was diagnosed and I was starting to get a little angry at such rude people, manners cost nothing and you don’t push past someone who is pushing a wheelchair nor the person in the wheelchair.

Eventually though we made it back to Sidcup, we then got changed and headed off to dinner at James parents’ home where we had a lovely meal, a perfect end to a near perfect day…

Tuesday the 17th of October

Tuesday was the day of the parliamentary reception in aid of the MNDA, both Angela and Victoria attended that event and to find out what happened inside you will have to read their blogs. It was in the centre of London so we set of early to get there in time, we arrived a little early and had time for a bit if sightseeing.

Angela and Victoria left me and headed into the reception and I went off to do some more sightseeing on my own, well more like sight feeling as I used the wall as a guide. Ancient Mariners used the stars in the night sky to navigate, I use potholes and building signs to navigate my way around. I made my way down White Hall and stopped to take photos of Downing Street, I saw a Black van come out of the gates, but they could have just been delivering the Prime Ministers the dry cleaning for all I know.

I made my way back to the reception for half past one, where I was greeted by security staff, I backed into a bush in the lobby, I didn’t know it was made of glass, not until it hit the floor anyway. I told them I am registered partly sighted and they said don’t worry about it and let me through to the canteen to sit down, mainly before I break anything else, good job they did as I needed to charge my phone.

After the reception, Angela Victoria and I went off to do some more sightseeing, we went to the portrait gallery, I liked it, but Angela wasn’t too entertained stating that Henry the VIII needed a shave and King George the III didn’t look like he was round the twist in his portrait. We next visited Buckingham Palace where Angela spotted a window open and wondered if the Queen was watching…

Wednesday the 18th of October

We left Victoria’s flat at 8am and we had a little breakfast in Sidcup before going for the train home. It was a good job we left early too, the train to London Bridge was delayed, when we came to get off the door was stuck and a passenger pulled the door release and held the door open so we could get off. When we got to the underground the barriers was up so we had to walk to the next entrance.

In all our trip to London was what we both needed, Angela’s state of emotion on a morning was getting to me; I felt the emotional levels rising and the grip of depression starting to take hold. I love Angela and I will always be here for her no matter what, but it is not easy at times and it can be somewhat stressful.

At some point the caresses also need a little care, more funding is needed to not only fund research so as to find a cure for MND, but also to provide more help for the carers of MND suffers, as the MND changes so does the level of care that is needed and new ways of doing things have to be found.

In conclusion though, the trip to London may have given us both a break, but it also gave Angela something more, it gave Angela the opportunity to see the life that Victoria has built for herself in London. All any mother wants is to know that her children are happy and well, Angela got the chance to see that her daughter has a lovely home with her partner James and that she is surrounded by people who care about her…

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Where has the time gone?

Early this year my then partner Angela, who is now my wife, was diagnosed with MND, six months have now passed and that time seems to have gone by so quickly. We will be spending a few days in London this week as Angela is attending the parliamentary reception in aid of the MNDA, while we are in London we will also be meeting Victoria’s partner’s parents who funded the new power-chair so we can thank them in person.

It is hard to believe that we are only two months away from Christmas. Christmas is going to be hard this year because it is always at the back of my mind that this maybe our last one together. I will make my Christmas wish now, I don’t want anything except this horrible disease to go away and give me a long and happy life with the woman I fell in love with.

Life can be so cruel, it gives you a glimpse of happiness only to snatch it away from you if you look like you are too happy, yesterday, we had someone at the door asking “do I believe in life after death” I politely said I’m not interested. I just felt like taking the flyers and ripping them to bits, it is a mixture of emotions for me, sadness, at the thought of losing her, and also anger that this is even happening at all.

A few days away will do Angela and I some good, a change of scenery is what we need to take our minds off the MND for a while. The only problem is that you can travel the world, but you can’t run away from what’s in your mind and when you return the MND returns with you.

I am trying to find something to occupy my mind, at the moment; I am studying the history of our country for a new website I am building and I am also writing about something that I know well, which is cyber security, it is hard though because at times my mind wonders off topic and back to the MND, and at that point I just end up powering down the computer, so it may take a while to finish it…

Angela’s Hospital Visit

 

It has been a week of worry because we got a call from the doctors to say that one of Angela’s liver tests was a bit high and needed to be retaken; Angela has also been struggling a little more with her eating and her speech. We went to the hospital yesterday to have a review by the MND nurse and the speech therapist; the nurse asked a lot of questions about how Angela gets around at home and had Angela had any weakness in her neck to which Angela said “No”.

At the end of the nurse’s questions she said that she was happy with the way we were managing  with Angela’s condition at this time and they were happy with the range of motion that Angela has, the nurse did say that there was something that both Angela and I needed to think about for when the time comes and Angela is no longer with us, but it’s a little upsetting to think about that right now.

Then it was the turn of the speech therapist, she asked how Angela is managing to eat and we told her that Angela is struggling a bit more and relying more on the PEG, they concluded that her swallowing had gotten worse, but they were happy how we found a way to manage it by blending her food and only making meals that are soft.

At the end of the consultation the nurse said that they have a conference every year where they discuss ways to help MND sufferers better, she asked if they could follow Angela’s diagnosis and take photos of us for their conference to which we both said “Yes”.

That was yesterday, today we have been to the sleep centre, this is where they check the Carbon Dioxide levels in Angela’s body and monitor her breathing, the last time we went there, three months ago, her Carbon Dioxide levels were 5.1, and today they were 4.8. That is better than the last time she had the test performed.

The hospital are pleased with that, and she has now been discharged from the sleep centre. On Monday we are going to the hospital again, but we have requested this appointment, we are going for a fit to fly test to be performed on Angela to see if it is safe for her to fly…

The Loss of My Family

When I was four years old, many years ago now, there was a fire at my house.  My brother and I were playing with matches, one thing led to another and a burning match got onto the sofa. In those days there were no fire retardant foams like there is today. It took only a few seconds for the whole thing to be ablaze. Not long after it spread to the rest of the house.  My mum got out by climbing out of the bathroom window onto the roof of the coal house.

I got out through the front door which was left unlocked. I can still see it so clearly in my mind after all these years.  The last thing I remember was grabbing my brother, Robin, and running for the door; he pulled away and ran behind the chair because he said that the fire would not get him there.  Both he and my sister, Tracy, died in that fire.

With all the heartache and stress of losing two children, my mum’s eyesight was to suffer.  Within a few weeks she began to see rings around the lights, at that point they took her into hospital for further tests, she was diagnosed with acute glaucoma, there is no cure for it. The doctors told her she had a 50% chance they could save her sight. They manged to slow it, but it took half her sight and left her with limited vision and dependent on eye drops for the rest of her life.

She was 30 years old at the time of diagnosis and she was 73 when she died just over 18 months ago now. Her passing came as a huge blow because of all that we had been through together.  When I was five I fell through a window and cut both my wrists to the bone, I was in hospital six months and another 18 months after that in rehabilitation learning how to use my hands again. The surgeons did a fine job considering the damage, but to this day I don’t have full dexterity in both hands and limited grip in my left hand, my mum saved me by sticking her thumbs inside my wrists and holding the arteries shut until we got to the hospital.

When I was 13, I began to suffer the same as my mum.  I lost the vision in my left eye and a year later they found out that I had glaucoma, as well as keratoconus.  I lost the top half of my peripheral vision, so when I look at the ground I can’t see above, not good when you are 6ft 4.

My mum and me have always been close and went everywhere together, until I met Angela and I moved into my own flat.  In the end my mum struggled to remember my name, but she passed away knowing that I was not alone.  She knew of our plans for Angela and me to get married and was happy about it.  All I have left of my mum now is a very grumpy old dog named Sam.

Since Angela’s diagnosis, I have noticed some changes in my vision. I go to the hospital every six months for a check up on my vision and they have increased my drops, which I am on for the rest of my life, to three times a day to try to counteract the pressure. The hospital have referred me to see a grief councillor because of the stress of losing my mum and Angela’s diagnosis of MND being so close together…

 

Practice Makes Perfect

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Angela, out with the new powerchair
Angela  yesterday, taking a break from testing the powerchair, drinking on the job is not allowed

For the last few days Angela and I have been going out with the power-chair in an attempt to ascertain if there are any issues that will cause us problems down the line, we have a trip to London on the horizon and did not want to wait until the last-minute only to find out we could not travel, we had concerns about not being able to get the power-chair on the local bus, those worries were partly justified on Tuesday while returning from Leeds we ran into a few problems.

 

When we came to get on the bus, the driver lowered the ramp and I pushed it on the bus, with my visual problems, I had worried that I would not be able to steer the chair using the rear control. I have been getting around problems like this for many years now and I have learned a few tricks in the process, like when I enter a room I tend to stay close to the door on my good side that way I know that I have clearance on my blind side, this was the tactic I used to get the chair on the bus yesterday and it paid off.

It was once we were on the bus where the real problem began, the space in the wheelchair bay is limited and the turning space is not that great, there is also the bar that supports the upper deck, and it is difficult to get round this bar with a manual wheelchair let alone a powered one.

When we came to get off the bus we found we were stuck, Angela had to get out of the chair and I had to push the chair off of the bus. Going into Leeds we walked it to the main road and boarded the Sapphire bus, those have a much larger wheelchair bay and the space for turning is greater.

Yesterday we set off again, this time to the train station at Woodlesford, it is a long walk, but we will have more room to manoeuvre on the train. So, we can ether walk to the train station or we can walk to the main road and board the Sapphire bus, I don’t mind, I am perfectly happy walking with Angela.

Today we are going to try the Sapphire bus again. It is just a matter of practice and more practice until we get it right, living with a disability is not an easy thing to do, you have your limitations and it can be hurtful seeing others doing the things that you want to do without any issues.

It would be a lot easier for us though if Arriva were to put the Sapphire bus on our route, Hint, Hint. Also, Angela does not have the confidence just yet to drive herself onto the bus, I can understand that, it all new and even though we have liability insurance, we don’t want to make an insurance claim just yet to buy Arrives a new bus. you can see a snippet of our test run on my facebook page

The New Powerchair Arrives

New Powerchair
Angela in her new Kite Powerchair that we received today

Today we took delivery of Angela’s new power-chair, it is the Kite power-chair manufactured by Invacare. We decided to take it out for a little test-drive to see how Angela can handle it before we attempted to take it out on its maiden voyage into Leeds. With the power-chair on its lowest power setting, we set off taking it slowly round the block a couple of times so Angela could get the feel for it, it comes with a 70 amp battery, so it will cover a range of 20+ miles easy.

 

The power-chair is really easy to manage and within a couple of circuits, Angela was driving like a professional, so we decided to take it a step further and go down to Springhead park, the park is about 0.8 miles from where we live. The old manual wheelchair that she was using was a bit tricky when it came to curbs, if the curb happen to have a slight lip, and if you happen to catch said lip, the chair would stop dead and tip forward.

 

The kite has no such problems and climbed them with ease. Coming home we put it to the ultimate test and set off up a fairly steep hill that before was near impossible to climb with the manual chair, Angela thought it may be too steep, but again the chair climbed it with ease.

 

The power-chair has a number of features, at the flip of a switch the motor puts Angela into a reclining position, the foot rests also have motors in them and enable you to lift either leg or both legs together, it comes with indicators and headlights for night-time driving as well as thick puncture proof tyres.

 

We had the chair fitted with a dual control, which is at the rear of the chair. Because of the MND, there will come a time when Angela can no longer steer herself, so the dual controls maximises the length of to time that the chair will be usable. Within an hour of delivery I was on the phone to Mark Bates Ltd, they provide insurance for mobility scooters. I was advised that because of the dual control we needed insurance for any drivers, so the chair is now insured.

Angela’s New Powerchair

Yesterday we paid for Angela’s new power-chair and it will be delivered on Monday, it has now been configured with dual controls, this will give her some freedom to move around outside herself and I can take over when she gets tired.  She is already thrilled at the prospect of once again having the opportunity to take Oscar (our pug) to the park again like she used to.

 

The MND has been hard on us all, but it is felt the hardest by Angela herself, it is so upsetting for her that she can no longer do the things that she used to like go running and taking Oscar out for a walk.  This new power-chair will at least give her one of those things back. I am still dreading the day though when I get that call telling me that she has run out of battery power on the M62!

 

Angela has had a go in a power-chair, but she finds it difficult to control, it will be strange for a while and she needs to adapt to it.  We are used to moving around under our own power and having to rely on a machine to do that for her now, will feel so strange. However, once she gets used to it she will be fine, we may even enter her in a drag racing competition.

 

I know from my own disability how hard it is to adapt to changes in one’s life, especially when these changes are out of your control and they are thrust upon you.  You have to learn new ways of doing everyday tasks that before were so easy to perform, but now we find those mundane tasks so strenuous and frustrating to do.

 

Given time and patience I have no doubt that Angela will adapt and accept the power-chair and she can begin her quest to terrorise the pigeons of Leeds as she weaves through the streets at 4 mph yelling “die pigeons, die” as the poor little birds flee for their lives!!!