Running for MND

https://www.dogjog.co.uk/leeds/?gclid=EAIaIQobChMIyd6Qiv6j3AIV5pPtCh1rJAlxEAAYASAAEgJ3ovD_BwE

https://www.justgiving.com/fundraising/victoria-brown95

Next Saturday Oscar will be doing a 5k (3 miles) jog around Roundhay Park in Leeds with Hannah Brown and Victoria Brown in Aid of MND. He is Ten years old now with four inch legs, to Oscar those three miles will be like running the London marathon, but he will be doing it and hopes to reach their target of a £1000 for a good cause, there is still time to donate

MND is a disease for which there is no cure, it has a 100 percent mortality rates, my wife Angela has this disease

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The changes we face

It has been a while since I posted anything, I apologise for any errors in my text this is due to a few problems that I am having at present . The lateness is mainly due to the fact that I have not had the time to sit down and write. Over the last few months there have been many issues that Angela and I have had to face.

We moved into a ground floor flat in January of this year, initially the neighbours were the problem as we kept getting complaints about the dogs, after the construction of a fence on the patio area to segregate the dogs from the communal garden the complaints stopped.

Next came the problem with my sight in that the interocular pressure rose to danger level, after laser surgery the pressure began to come down. I am now going to the glaucoma clinic every few week instead of every six months.

Angela’s health has changed over the last few months too as she is now more dependant on the wheelchair, she is also needing more help in that I have to help her to the toilet as well as help her to wash and dress, she is my wife and I love her, so I don’t mind doing all this.

We even have a daily routine now, I am up at six in a morning and get the house done before Angels gets up, it takes a couple of hours to do the medication and get Angela ready to go out. Angela is on five lots of medication, two of which are in pill form, they need to be crushed with the pill crusher.

The other three other types of medication are liquids, the nurse comes every morning and does the crushed pills, but I have to administer all the liquid medication.

It is getting harder, and we are having to adapt to many changes. For instance It is getting more difficult for Angela to type, as a trained typist her fingers were like a blur on the keyboard. It is so difficult for her not to be able to do the things that she is trained in anymore.

I have tried to make it a little easier for her by taking away some of the typing by using my background in programming to make her a new speech app for her phone, but as things progress I know that this will be of little use one day.

The hospital arranged for a profiling bed, when it arrived it was nearly 7ft in length. We have limited space so our bed had to go to make room for all the medical equipment that is coming.

Angela is only 4ft 11in, when she get in the bed she slides down as the top is lifted, she prefers to sleep in he riser recliner chair. I tried the bed and could only stand it for thirty minutes, I now sleep on the sofa, which is about as comfortable as a pile of bricks.

The problem is that they deliver the equipment, but they are slow at taking it back when it’s not needed, and we have to store it. I told the nurse last time i was going to give any leftover equipment to the scrap man if it’s still here because we really do need the space.

Social services are now arranging to have the bed taken away, they have arranged for a carer to come in and help Angela out with washing, they start in just under two weeks time, this will give me more time to get the house done as well as the mountain of ironing that resembles mount Everest.

Because of Angela’s drop foot she had been referred to orthotics to have a support made for her ankle, they decided the best to do this was to have cleats fitted to a shoe. We have been back and forth to the hospital with different pairs of shoes only for them to be rejected, we handed a new pair in last week, so far we have not had them rejected.

We have more visitors tomorrow who are coming with some more equipment which should make things a little easier for Angela, It is very stressful at times for us both as with all the visitors, and appointments, it feels like your life is not your own.

Our health

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…

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…

“Remember, Remember the 5th of November, Treason, Gunpowder plot”

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.

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…