Angela’s passing

It has been a long road full of heartache and tears, that is what MND does to a person, not only does it destroy the person that is suffering from this terrible disease, it sucks the life from the people that are closest to that person.

There is nothing that I can think of that is more painful than watching the person you love most in this world slowly deteriorating to nothing more than a shell of their former selves.

That is what MND did to my wife, it took her away from me in just over 18 months from the time she was diagnosed. Angela loved to laugh, and she did her best to put on a brave face, behind the scenes it was a different matter, we had many meetings with doctors and MND staff, it was a whirlpool of information at times some of which caused a lot of stress and we kept many things to ourselves about that.

The one thing that we can be thankful about with regards to this horrific disease is that it causes no plain as it progresses, Angela did have some pain in the latter stages mainly due to the lack of movement and her legs becoming stiff. I was given some exercises to do on Angela’s legs to help keep the mussels moving.

With MND there is a higher risk of chest infections as the breathing mussels start to get weaker, we were lucky in that Angela only had one infection since she was diagnosed, that was a chest infection caused in part by Angela not been able to swallow which resulted in the saliva pooling in the back of her throat.

In an attempt to stop the problem with the saliva, Angela was given Botox injections in the saliva glands, she squeezed my hand tightly for that one.

The nurse told us at the time of the injection that there was a chance that there could issues as a result of the botox, and that Angela needed to swab her mouth to keep it moist. But, Angela still developed oral thrush as a result and it took a course of antibiotics to begin to clear it up.

Angela passed away on the 18th of November 2018. It is only February as I write this and I miss her so much, MND is a horrible condition and it need to be eradicated from the face of the earth. Only by telling the story of the emotional pain can we keep this disease in the limelite and thus help persuade people to part with money, money which is needed to fund research into this disease and thus funding a cure once and for all…


The passing of angel

On the 18th of November 2018 my wife lost her battle with MND, she passed away at 4pm. It has left a hole in my heart that nothing can fill.

We met at college five years ago, In all that time I have woke on a morning looking forward to the day ahead, she even made going to a job I hated easer because I knew at the end of the day I would be coming home to her.

Now when I wake on a morning I see nothing to look forward to except a bleak day. I feel like a huge piece of me died with her.

It has been so hard over the last 18 months as I watched the terrible disease that is MND take a little more of her away from me with each passing day.

We knew the day would come when the disease Would finally take control, but still it does not make the pain any easier.

We have had so many good times together over the years, we laughed every day. It breaks my heart that I will never hear her laughter again.

Angela’s passing has effected the lives of many people, her daughters Hannah and Victoria, Her dad, sister, brother, and many more in the family.

She touched the lives of so many people in the time she was here, now we have to find a way to survive without her…

Running for MND

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

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…