Good News and Bad News

Sticky

It all started with the video.

In late Sept 2017 my voice started changing and I knew it was time to tell more people… so I grabbed my friend Phil and met up to record a short video message to tell everyone about the diagnosis. Since then, after lots of coffees and chats, I thought it would be good to start a blog. I’ve not done one before so bear with me as I learn what to do. The good news is that Julia, my wife, has agreed to write some posts; so we should have some laughs…

This is where it all started:
You may have noticed that my voice has changed over the last few weeks…
Well there’s some good news and some bad news…


(Credit to Phil Adams for taking my ramblings and producing this masterpiece)

More information:
Homer Simpson does the 5 stages of grief in 21 seconds: 

MND association info:
Click the title “Are there different types of MND?” – and you’ll see it under there – “Bulbar onset MND”

Ill

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What is the mark of a hero? Is it a soldier, running into battle, looking death in the face? Is it the athlete who breaks a world record ? Is it the activist who risks prison, torture or death to fight for justice? I have known many quiet heroes who fight their battles with dignity and bravery but none have been so resolute and brave as Michael.

A week ago he awoke around 6am as usual but became ill very rapidly, eventually being taken to the John Radcliffe Hospital. He was diagnosed with aspiration pneumonia and spent two days being stabilised before I was able to take him home again. Words like “comfortable” and “peaceful” were mooted as goals for him but Michael isn’t ready to give up. He still firmly believes that Plan A will happen.

But his miracle hasn’t happened yet and as today has worn on he has become sicker, despite our best efforts to make him better. The antibiotics don’t seem to be making any headway and his condition is continuing to deteriorate.

The NHS is so often criticised for not being good enough but they have been magnificent; from the District Nurses who have so patiently and caringly explained the different options, the GP who stayed at work late into the evening to make sure everything had been done that could be done, the ambulance staff who tried to prevent an acute admission, the nurses in the EAU who watched him through the night and made sure he got his medication on time as well as finding a bed for me, the staff on 6C who went above and beyond to make him comfortable and let me sleep by his bed and the HCA who hunted down extra pillows and ice cold water. They have all done as much as they can so now it’s down to us.

We’re looking death in the face and Michael has not flinched. He hasn’t cried or tried to shout, he hasn’t run from the fight but is meeting it head on. He is my  strength even when he is too weak to move his hands. Today someone sent the following verses to encourage us and to honour him I want to share them with you, because this is Michael:

Isaiah 61, 1 – 3

The Spirit of the Sovereign Lord is on me, because the Lord has anointed me to proclaim  good news to the poor. He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the Lord’s favour and the day of vengeance of our God, to comfort all who mourn, and provide for those who grieve in Zion, to bestow on them a crown of beauty
instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendour.

So if you pray, please pray for a miracle. If you don’t, why not give it a go? You never know.

A tale of two taxis

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Michael and I wrote this last week, before he got ill.

 

A Tale of Two Taxis

Michael had an appointment at the John Radcliffe for Botox injections to reduce his saliva. Take a taxi, I thought, because it will be really straightforward and stress-free. I rang the company in the morning, explaining that we needed a taxi that would accommodate a tilt-in-space chair. “Of course, I’ll make sure you get one that will fit the chair in, no problem.” And could I pay in the taxi? “Yes, all of our taxis have card payment on board.” And please make sure it’s on time as we’ve not done this before and we don’t want to be rushed. “Made a note of it, no need to worry”.

It would perhaps be unfair to name the company, but suffice to say they made a right royal mess of it. The taxi was late, the driver flustered and bordering on rude as he told us we couldn’t mess around because he had special needs kids to pick up for the school run, and they got upset if he was late. He grabbed the chair and took a run up before getting stuck at the top of the ramp and yanking out the head rest. “You don’t need this, do you?” Well yes, actually, but if we delay any more we’ll miss the appointment. “Get in miss, we have to leave now or we’ll be late. Have you got £35? If not I’ll have to stop at the cash point so you can get the money out”. So you don’t have a card reader in the cab then. Neither did he have the facility to secure the wheelchair to the taxi so, as he took the bumpiest possible route to the John Radcliffe in order to avoid traffic I perched on the edge of my seat, one foot wedging the wheels of the chair as it skidded across the floor and both hand supporting Michael’s head as he was thrown around.

The driver asked me to key his number into my phone so we could just call him direct next time (never going to happen) so I pretended to press the required buttons while praying that the traffic jam would budge an inch and we could get into the drop-off area before Michael missed his appointment all together. I felt sick, flustered, and guilty for putting Michael through this awful journey because I thought it would be easier than driving, waiting an hour for a space to park in then trying to walk him with his ventilator, suction and feed pump. How would we get home, because we weren’t asking Mr. Helpful to drive us home again?

So I asked the Help Desk at the John Radcliffe for help. They knew exactly who I needed and gave them a call. 25 minutes later an energetic man with a massive smile bounded into the West Wing and said, “You must be Michael! I’m going to get you home. Please excuse the trestle tables; I was on my way to drop them off at the church hall when I got the call. Can I put the air conditioning on? “ Kit Mobility, a wonderfully professional and friendly company who actually CAN fit a big wheelchair in the back of the taxi without taking it apart and have the equipment to strap it to the vehicle.

Being in a wheelchair makes you so very vulnerable, and caring for someone who is in one can be a frightening responsibility. People who operate them have a duty of care to those they transport and this has been a real eye-opener for us. Still, now we know who to call and Michael got his Botox, so for his next treatment we’ll be fine.

 

 

The Fall

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Michael’s story
Last Sunday I found myself on the floor at 4am. I think I had tried  to get out of bed and took my BiPAP mask off. It is strange having weak arms and a heavy head with no neck muscles.
I couldn’t get up of the floor although I tried very hard. I knew I couldn’t be down there long because of my breathing: I can’t lay flat and breathe. So there was time pressure.
Julia was in the lounge reading a book (probably asleep) and I couldn’t reach the call bell. The BiPAP was alarming and the tube was by my mouth so I could get some fresh air .  Someone was looking after me.
Then I spotted a cable charging my phone and I thought if I could phone the landline it would wake Julia and she would see my number and guess I had been stupid.
I pulled the wire and brought the phone within reach, dialling the house phone a couple of times…..  My next thought was Jonny but  then Julia appeared and got me sat up. I thought I had broken the humidifier but it’s tougher than that. My only injuries were a couple of small bruises on my right arm.
Julia’s story

Having had enough of Michael’s interminable faffing I went to sit in the living room and read a book at 02.30. I awoke to the sound of our phone ringing at 4 am. The number was “Mike Mobile” so I naturally assumed it was my brother but on checking the number found it was Michael’s phone. As I opened the door to our bedroom I could hear the alarm for his BiPAP then spotted him flat on the floor. After my initial reaction (panic) I checked he was still breathing before manhandling him upright and replacing the BiPAP. It’s amazing what you can do when you have to.

Being at home and facing a situation like this is far more difficult than at work; there’s no alarm button and no colleagues to help you move the risk-taking buffoon back into bed. Panic gave way to irrational anger; why did he try and get out of bed on his own again? I feel pretty chilled about it now, but for a few days afterwards I couldn’t stop thinking about what might have happened if he hadn’t been able to reach his phone.

We’ve made an adjustment to the place his call bell is so now he can reach it is he falls again but Michael shows no signs of actually doing what I tell him to and continues to launch himself out of bed while I sleep through it. I shouldn’t complain about his stubbornness though; it’s what got him this far.

No toddlers were harmed in the making of this blog. Reenactment staged using a very cooperative model.

Sue Ryder

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Imagine my surprise; I was enjoying my Saturday morning lie-in (as opposed to a weekday lie-in) when two Sue Ryder nurses came into my bedroom offering to help me with a shower. Julia has a chest infection and so finds it hard to do my shower at the moment.  Any excuse…

Julia must have forgotten to tell me, probably because I would have worried and got no sleep at al

The Sue Ryder nurses are very caring and put me at ease straight away. Julia explained how I liked my shower and made sure they knew where all my beauty products were then left them to it, shuffling back to my comfy chair to cough and sniffle. I’m sure they know what they’re doing but I’ve never had shaving foam squirted on my armpits before. Now I’ve asked Julia to leave my roll-on out so there’s no room for error.

Dexter has taken a shine to my team of nurses and is positively flirtatious; seems he also likes a woman in uniform. They love him too and are becoming part of the family. We never know what time they’re coming which keeps Julia on her toes. The bathroom has never been so clean.

If you’re into praying please pray that Julia gets better.

The Day Off

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The other day Julia started to complain she had something in her eye. Then one of the boys noticed her right pupil was massive. The boys quickly ruled out drugs as a cause then consulted Doctor Google who said it was either a brain haemorrhage or tumour.  So Ben drove her to A&E and the other lads were put in charge of my care. We soon discovered that Jonny would make an excellent nurse.

Here she is on the phone to 111.

Within 30 minutes she’d a head scan but they didn’t find anything. I don’t know if that means she hasn’t a got brain or nothing abnormal was detected. Ju went back the next day and they still couldn’t explain it. I suspect she rubbed some medication in her eye to get night off.

The good news is that our friends prayed and now it’s all good.

Our lovely friend, Pat, from Church has been providing respite for the past few weeks which has been brilliant for Ju. Sue Ryder Hospice at Home carers and nurses finished their training for me today and will start daily respite visits from next week to give Julia some time off so she doesn’t have resort to A&E. It was entertaining for her to sit in on the sessions and see the training pack she’d written in use.

Dexter has started paying attention to my gadgets and tries to fiddle with the settings for my feed pump although thankfully they’re locked. He mimics the noise of the suction in a remarkably realistic way and likes to try on my BiPAP mask. I’m still able to help with him at mealtimes if everyone else has given up in frustration having been splattered with macaroni cheese or ice cream. He finally said my name this week although he still refers to Ju as BumBum.

Happy New Year

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About a year ago … they said I wouldn’t make it to Christmas so it has been livelier than I expected. I think it’s a God thing.

I want to thank those who kept us in their thoughts or prayers.

A good friend, Mary, popped over to drop some DVDs off and she said I look healthy for someone who’s supposed to be dying! I took that as a compliment.

I’m getting used to the breathing machine (BiPAP). I can now sleep for 3 hours with it on.

On Christmas day the family came round to our place bringing an entire Christmas dinner from as far afield as Grove and Bicester. There were 22 of them and we had a brilliant time. The oldest was Julia’s Dad at 82 and the youngest our newest nephew, Zachary, at 5 weeks and they both slept through most of it. I escaped and slept through the meal but joined everyone to open gifts which included another inflatable Jesus.

We’ve told the boys any moaning coming from the bedroom is probably me getting out of bed as it’s beginning to get really difficult. Julia says it’s my heavy head.

The collar is getting interesting as my neck gets weaker; I’ve broken two of the supports. (Must be my heavy head!)

If you’re into praying: I feel quite healthy at the moment – just tired. Breathing is getting tricky. O2 sats are normal but it’s taking more effort to breathe.

We wish you all a happy and blessed new year.

chest infection

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For the last 2 or 3 weeks I have been battling a chest infection with broken nights because of a rattly chest and cough. Julia thought it was due to reflux, where my 2-hourly feeds come back up and get dumped in my lungs. So she asked for a feed pump that basically delivers feed at a lower rate over 12 hours. We start it at 8am so it is done by 8pm and we charge it overnight so there are no leads to trip me up.

I like it because once I have got up at 8am I can go back to bed and sleep all morning with the pump feeding me – no 2 hourly feeds.

My sister Jo says it looks like butterscotch angel delight; if only.

I had another trip to EMU in Abingdon on 22 November where they did a chest x-ray and took bloods and said the infection had gone. All the rattly chest business is old stuff that I would need to clear.

This time Julia got a cuppa tea and a chocolate biscuit. 

Prayer Group was round our house last Friday. All the kit we would have had to put in the car and the tiredness meant it wasn’t practical to have it at church. We were left with a calm and peaceful feeling in the house which was due to more than Dexter sleeping at his Mum’s that night.

A good friend Brian popped over to pray after having been woken in the middle of night before with me on his mind and since he prayed for me it has been easier to clear my chest; no more panic to get my breath. I’ve slept really well since then and I’m feeling a bit more human.

The day after Brian came over to pray for me we had a ventilation appointment with the physio. The lovely Anna tweaked my scream extractor (cough assist) to take 2 breaths in and out before the cough phase and then as I cough it is oscillated to try and move all the stuff up. She also trained Julia to do what I can call professional GBH: manual cough assist.

I will have to use my BI PAP (overnight breathing machine) again as Anna said my bicarbonate levels were up a bit showing I wasn’t breathing deeply overnight. Now that the saliva is under control I think it will work better.

When last at EMU they raised the subject of the lilac form. Basically we discussed whether they would jump on my chest if my heart stopped and we decided not to, which seems a good idea.

Julia told the doctors we had a back-up plan…….

In the Bible (Matthew 10 v 8) Jesus commands us to heal the sick and raise the dead. I haven’t seen any people raised from the dead but I’d like to set a challenge for few friends. We called them team Lazarus.  (John 11)

I haven’t got the strength in my arms to shave so Andrea my sister in law shaved my face. It was a bit scary but no blood..

 

I got a head, neck, and shoulders massage this week from the lovely Kath, a holistic therapist, which was sheer bliss. I’m planning to make it a weekly occurrence. https://www.kathannholt.co.uk/  

If you’re into praying: please pray for no more rattly chest and getting used to my overnight breathing machine in a few days.