Live while you can

September is always a melancholy month to my mind.  Suddenly it’s dark much earlier, the summery garden begins to fade (and people start talking about Christmas). 

This year September has been true to form and has brought some disappointments.  We thought it would be great to take advantage of travel restrictions easing and book a half board week away in November at our favourite hotel in Costa Adeje, Tenerife.  A ground floor hotel room was available, flights from Luton were plentiful… let’s organise some single trip travel insurance quotes first to be on the safe side.  First quote £2,250.  WHAT?  Second quote £4,800.  FORGET IT! 

Quite clearly someone who has MND, who has been told that it’s a terminal condition, who also has a history of heart attacks and prostate cancer is too big a risk.

We made the most of the remaining good weather with trips to our static caravan and days out.  We also took the train to London for a consultation with the respiratory team at Queen Square.  My peak flow and peak cough have declined quite markedly since June, CO2 retention in my lungs is up, and I’m experiencing increasing amounts of congestion in my lungs.  These are becoming noticeable problems, but I haven’t been able to use my ventilator much because of excessive salivation and an inability to swallow when lying down.  This sialorrhea was improved a bit when I started taking Amitriptyline tablets and now Hyoscine patches have been added to my growing list of medications.  Marketed as a preventative medication for travel sickness (some irony there) a known side effect is a very dry mouth.  It’s sort of working for me now and I now start every night on the ventilator.

I’ll leave my thoughts and reflections on September with a quote from a book written with humility, humour and humanity by Father Tony Coote, an Irish Priest who developed a MND at the age of 53.  Within two years he had died, but not before raising the profile of MND in Eire and raising €70,000 to increase from three to four the number of MND specialist nurses in the country.

The book was recommended to me by a former colleague and friend, and I like Tony Cooke’s central philosophy:

If you set out thinking you can battle or fight with MND, you will always be the loser. You will waste so much energy that would be better served preserving your strength in order that you can focus with clarity on what really matters.”

(from “Live While You Can: A Memoir of Faith, Hope and the Power of Acceptance” by Fr. Tony Coote)

Sounds good to me.  I’ll try not to waste my limited energy.

First Anniversary

August was largely a dull, cloudy month and it marked one year since the first discussion with a GP about the ominous collection symptoms I had been experiencing.  One year on and I have definitely gone downhill.  My speech and swallow are considerably worse, and my arms and hands are badly affected.  On the bright side, my legs are still working after a fashion, I haven’t had any more chest infections, and I’m still here. (It is very difficult to be positive with MND when, all the time and day by day, you are losing one function or another!)

We enjoyed a couple of trips to our static caravan in Dorset and some sunny days.  We re-visited Dulston Country Park near Swanage and the magnificent gardens at Compton Acres in Canford Cliffs, places we both love. Both days out were enhanced by my wheelchair, which I’m now getting well used to using. It speeds up our ‘walks’, reduces the risk of falls and prevents total exhaustion. 

Durlston Country Park
The Italianate Garden at Compton Acres

August also saw several social events including small scale visits from former colleagues from Woolworths and Abbots Langley Citizens Advice.  We also attended a summer garden party celebrating the 70th anniversary of Abbots Langley Gilbert & Sullivan Society, of which I am honoured to be a vice president.  It was a lovely afternoon, only marred by the fact that afterwards I was ‘pinged’ and ordered to isolate because one (double vaccinated) person there later developed COVID-19! Needless to say, I didn’t develop COVID but it made us both realise how vulnerable we still are.

My tip of the month for anyone suffering from dysphagia (swallowing problems) is that Slo Drinks Pill-Eze has been invented.  Put your pills in the spoon provided and pour on a dollop of the cherry flavoured gloopy liquid.  Easy-to-swallow pills in a trice! 

High Summer

July was supposed to be ‘high summer’ but, as we know, it turned out to be a bit of a damp and cool disappointment most of the time.  However, we had some lovely days and we made most of them.  At long last we were able to enjoy our long-awaited Christmas lunch with nearly all the family – just two absentees due our elder grandson being in isolation because of COVID cases in his school bubble.  The following day the weather was brilliant as we celebrated Sue’s 65th birthday at a wonderful ‘secret’ party arranged by our dear local friends.  On another occasion Sue and I visited Ascott House in Buckinghamshire on a hot and sunny day (with my wheelchair) and, with our immediate family, we enjoyed a wonderful weekend away at Pendley Manor near Tring.  Not very far from home, but it had all the facilities we needed for a good break. 

My saliva and mucus issues were resolved to a degree and are now more tolerable problems.  I have been taking Carbocisteine for mucus congestion for several months, but during a routine consultation with a neurology consultant at the National Hospital, it became clear that my hydration hasn’t been sufficient.  In addition to teas and coffees it seems I should have been drinking up to two litres of water a day (and alcoholic drinks don’t count).  Water is quite difficult to drink when you have MND so, within a couple of days, I had been supplied with a pump to deliver water via my PEG feeding tube while I’m sitting in a chair watching TV.  This is a much easier was of ‘drinking’ and later the pump can be used to deliver food in the same way.

Excess saliva has been treated by taking a small daily dose of Amitriptyline.  Primarily this is an antidepressant, but a known side effect is a dry mouth – a good example of a drug being repurposed to do a different job to the one originally intended.  The antidepressant qualities are probably quite handy too.

Sadly, my BiPap ventilator remains an object sitting by the side of the bed gathering dust rather than a useful piece of medical equipment.  The face mask is unbearably uncomfortable, it leaks around my short beard and moustache, and it breathes too fast for me in a very disturbing way!  The neurology consultant said that these issues would be addressed at an outpatients’ clinic, but this is yet to happen.

Not a good look!

The major change in function I experienced in July was the continuing rapid decline in my arms and hands.  When MND started my dominant right hand was fine as the left declined.  They are now both pretty useless and this makes everything so much more difficult.  Typing is now a two finger job, I can no longer safely lift a mug of coffee and eating is a potentially undignified process.  One thing that has helped though is the delivery of my arm support contraption.  It’s an ingenious but simple piece of equipment and makes eating much easier because it supports my arm and then, when I push down with my elbow (still achievable) it raises my hand up towards my mouth.  Every person living with MND should have one, however I know that’s not the case and I was fortunate to be referred to the Oxford specialist disability service.

Deep breathing

On Wednesday 9th June, after a COVID test and self isolation, I was a planned admission to the Neuromuscular Complex Care unit at the National Hospital in Queen Square for a respiratory assessment. Apart from inadvertently driving into a vehicle free zone in Tottenham Court Road on the way, we had an uneventful journey (I’m still waiting for the Penalty Charge Notice to arrive!)

With MND the muscles that control breathing become compromised. This causes shallow breathing, which leads to a decreased oxygen level in the blood and a build up of carbon dioxide in the lungs (particularly at night). During my two day stay in hospital I learnt that the latter problem is actually the more serious. The answer is to use a ventilator that gently pushes fresh air into the lungs in a rhythmic breathing pattern. If done overnight the chances are that you’ll wake up feeling much more refreshed.

One of my longstanding friends prayed that I should be given bed next to a sunny window in the NMCCU. It worked!

After a series of blood tests, and an arterial oxygenation test, I was introduced to my Philips A40 BiPap machine and face mask. The mask is incredibly uncomfortable to start with and you really wonder how on earth you’ll be able to sleep! But it has to be tight to prevent excessive leakage. My first session (in the afternoon) was of about 30 minutes duration – long enough to begin to get used to the ventilator and to learn how to breathe at the same rate as the machine.

It’s a very clever device and, via a two way inbuilt modem, the hospital team can monitor my use of the machine and make adjustments to the ventilator settings.

The first night sleeping with the ventilator was very difficult. In addition to wearing the mask, I had a blood oxygen sensor attached to my right ear (and earphones in my ears to give me something soothing to listen to). Once back home things did become easier and, alongside taking medication and flushing my PEG, putting on the mask and setting the machine were added to the bedtime routine.

For about two weeks I found I could manage to sleep reasonably well using the face mask for about four hours most nights, and then would abandon it for the second half of the night. Then I encountered a problem, which is still being investigated – excessive amounts of saliva. Unfortunately, this has stopped me using the ventilator for the time being. Many people living MND find they have more saliva and mucus congestion than normal, and it tends to be quite thick and tenacious. When I’m lying down (even in an elevated position) it’s very hard to swallow and to clear. So, with mouth slightly open because of weakened muscles, saliva finds its way into the mask giving the sensation of drowning.

I’m trying various medications which are supposed to have the effect of reducing the problem of saliva secretions. Hopefully this will be sorted in July, allowing me to resume nightly use of the ventilator.

Other news in brief

In other news this month, I’ve noticed that my legs are much weaker now – to the point where it’s getting very hard to stand up from sitting (this adds many complications to life) and I no longer trust my hands to carry a drink or a plate of food. So it’s now two hands for every job – my left hand supporting my right. So a straight beer glass has been replaced by a light plastic one one with a handle, and the time is coming when I will need an arm support machine to help me raise a fork to my mouth. As I’ve written before, it important for me to try to stay one step ahead of looming problems. You can’t beat MND, but you can prepare, and this in itself gives some small degree of satisfaction.

Finally, we had a lovely time in Dorset over two days with my sister Jill and brother in law David. Kimmeridge Bay was stunning at low tide on a mid summer Wednesday morning, making life a lot more bearable.

Online Summer Concert

The very best thing in June was the Online Summer Concert staged by my friends in Abbots Langley Gilbert & Sullivan Society, which raised over £2,600 for the local branch of the MNDA. The South Herts MNDA supports me, and also helped another longstanding member of the society who sadly died in 2020.

I’ve been an active member of ALGSS for 34 years; this was a wonderful event for which I am truly grateful.

You can watch the concert on YouTube here:

Mobility Month

May was officially ‘Mobility Month’.  The first set of wheels to arrive was my Invacare TDX SP2 power wheelchair supplied by Millbrook Healthcare on behalf of the NHS.  This is a really big beast weighing in at 180 kilos; it’s great and it will transform our lives.  I am still able to walk a bit, but it’s slow and a bit jerky and unsteady.  It’s also very tiring and if I were to fall, my arms certainly aren’t strong enough to prevent a head injury.  I’ve already experienced that and it’s not an experience I want to repeat.

The power chair has ‘tilt in space’ and ‘rise and recline’ functions, and also attendant controls.  It was built to MNDA specifications, and it was readily available.  Evidently it had been ordered for another client who sadly didn’t live long enough to take delivery.

We had previously worked out that it would be impossible to get a power chair into the house in a conventional way – up one small step, over a threshold into the porch, then over the larger front door threshold into the hall.  So our plan has always been to have a 3.5 metre long ramp installed in the garage giving easy access into the back of the kitchen.  The really solid ramp was built by a recommended contractor in a couple of hours with a £1,000 contribution from our Herts Adult Services OT consultant.  The balance of £365 was VAT free as the work was health related.

The next set of wheels to arrive was our wheelchair accessible vehicle provided under the Motability scheme.  We received amazing service from Clarke Mobility based in Aylesford, Kent.  The WAV is a Peugeot Rifter converted by Allied Conversions.  It’s a ‘nearly new’ vehicle, less than six months old, with only 1,000 miles on the clock.  The upfront cost to us was just £895 and the monthly lease cost for three years is deducted from my PIP benefit (Personal Independence Payment).  This is an amazingly good deal.

You drive the wheelchair up the inbuilt ramp into the vehicle and it’s then tethered safely.  In addition to the driver and front passenger seat there’s a single passenger seat in the back next to the wheelchair space.  For the time being I’ll be sitting in the front, but it means we can take the wheelchair with us wherever we want, and we’ll be able to go for ‘walks’ as in the past. Walking just a few steps at a really slow pace hasn’t been much fun for Sue.

The third set of wheels received is a shower wheelchair.  It’s now very difficult for me to raise my arms enough to enable me to wash my hair; this will be another job for Sue in the near future, and the shower wheelchair will be invaluable.  Grateful thanks to the Herts Community NHS Trust for this.

On Wednesday 9 June I’m being admitted to hospital for a respiratory assessment.  My breathing is quite badly affected by MND now as measured by my ‘peak flow’ and oxygen SATs.  I expect to be given a non-invasive ventilator to push air deeper into my lungs at some stage.  In other respects, the progression of the disease is relentless but possibly slower than I had imagined.  I can still eat a reasonably normal diet, I can still speak reasonably coherently, but my arms and hands are noticeably weaker as the weeks go by.  It is very frustrating to have to ask for help every time I want to pull my trousers up!  Thank goodness it’s now summer – shorts are a great deal easier to put on.

Ups and Downs

April has been a month of ups and downs.  On 9 April our king size, dual adjustable, up and down bed was delivered.  A great investment, it has two mattresses side by side and (independently) the head and foot of each mattress can be elevated as required.  I’ve never been great at sleeping on my back, but this makes it much easier and improves my breathing and reduces the coughing and spluttering that was ruining my sleep.

On 15 April we had two stairlifts installed.  One is curved and goes around four bends to take me from the ground floor to the first-floor landing.  As it twists and turns on its journey it’s reminiscent of a fairground ride (just a lot slower).  The second lift is much more straightforward and takes me from the landing to our second-floor bedroom.  I will give a big plug for AST Services Ltd; they did a great job.  The lifts are rented as nothing is permanent with MND, the price was fair and the MND Association contributed a grant of £1,500 towards the initial set up and rental costs.  The lifts could have been purchased and rental would be the more expensive option after two and a half years.

On 19 April my Accora Configura twin motor rise and recline chair was delivered.  Again, my grateful thanks to the MND Association who purchased it for me.  It really isn’t the most beautiful piece of furniture, but it’s very supportive and comfortable and I guess that’s what’s most important right now.


The PEG is fine, and Sue has done a wonderful job of managing the daily flushing and weekly rotation.  The support from the Abbot Healthcare nurses has been brilliant in providing advice and reassurance.  During April we used the PEG to deliver Teglutik (Riluzole) medication and extra water.  It’s easier to squirt water down the tube then make up and then drink rather unpleasant thickened water!  I’d urge anyone in my situation to opt for a PEG as early as you can.

Another remarkable arm of the NHS delivered in April too.  On the last day of the month, we were visited by a company called PC By Voice; they have loaned me a Housemate device programmed to operate plug in lamps and the TVs and Sky Q boxes in our living room and bedroom via an app on my iPhone and iPad.  The system works by touching large icons on the phone or tablet, or by speech.  As my voice is quite weak, touch is probably the best way for me to operate the system for now.  In the longer term, it can be programmed to respond to eye gaze if required and that time may come.  Incredibly, the NHS would supply an iPad if I didn’t already have one, or if I wanted to have a dedicated device.

12 April was eagerly anticipated as it meant we could at last meet up to six people in our garden as the second stage of the lockdown freedoms came into force!  We enjoyed some lovely al fresco meals in April including a family lunch for my 66th birthday.  We have also been able to stay away in our static caravan near Wareham in Dorset; it felt incredible to be somewhere else – away from home!

Pubs reopened for outdoor service, and lunches and a dinner out with friends and colleagues have been very enjoyable.

Freezing cold in Swanage on 13 April!

Some Downs

I’m definitely getting weaker.  I’ve mentioned my voice, which on occasions is just a quiet and slurred whisper.  My arms and hands are getting worse too; I know that because now I don’t really have the strength to unload the dishwasher.  It’s the little things like this that you notice… something new is taken away every few days.

Despite having the new bed, I have had some bad nights when I’ve woken up several times seemingly choking on mucus and saliva.  As a specialist at Queen Square told me, my swallowing is the problem.  Everyone produces saliva all the time and we swallow litres of it every day without even thinking about it.  But with MND, as soon as you lie down, the ability to swallow is compromised and things can get very uncomfortable. 

You can never forget you have MND.  Every time I move to pick something up, or to scratch an itch, to walk rather jerkily, I’m reminded that I have a serious illness that isn’t going to get better.  Sometimes I’m surprised that I don’t feel chronically depressed about the situation.  So far, I’ve been able to stay positive, scale back my normally high expectations and see the good side of the situation.  I hope the feelings of positivity and optimism last as things progress.

So MND is bad for me, but I think it’s equally bad for those around me – particularly for people who maybe don’t know me so well.  It’s the elephant in the room, and I quite understand why some people just don’t know what to say.  As it’s so dominant in my life it’s difficult for me not to talk about it, so there are some awkward moments.  How should you respond to the inevitable ‘How are you?’ question we all ask every day? There’s a danger that I’ll retreat to the comfort of home, my family and my closest friends.  I think that might be a problem so, for now, I’ll work on the basis that I must carry on ‘carrying on’ as normally as possible, try to engage with other people as before, and try to make it as easy as I can for them.

PEG procedure

Following a negative COVID test I was admitted to The National Hospital on Tuesday 23 March, and had my PEG fitted the following morning at the neighbouring UCLH (University College London Hospital). Knowing that something invasive was going to be done under sedation rather than a general anaesthetic, I was quite nervous as I have a very low tolerance of pain. However, I can honestly say that I don’t remember anything about the procedure at all. I do remember having to bite on a circular object to hold my mouth open, then the sedative being delivered via my cannula… and that’s about it until I came round some time afterwards.

Back on the ward I was given intravenous hydration, then I slept deeply and woke up mid afternoon to have my new feeding tube checked and flushed for the first time. Then, six hours after the procedure I was allowed to eat and have a drink (the first time for twenty-four hours). I didn’t eat much – probably psychological, but my stomach felt a bit bloated and I didn’t feel very hungry.

The next day Sue came to the hospital and was trained in how to clean the stoma site (for two weeks) and how to flush the tube, which will be a daily occurrence. Having been visited by my neurology consultant earlier in the day I was discharged and we were able to go home together by car.

Two weeks after the procedure we would be visited by a nurse from the Abbott Healthcare company and shown how to routinely rotate the tube to prevent ‘buried bumper syndrome’ (where the internal disc of the PEG tube becomes buried and the stomach lining grows around it.

The coordination between the National Hospital clinicians, dieticians, and my GP, local community nurse and dietician had been well organised. Communication channels could have been weakened during the pandemic, but there was no evidence of this and everything appeared to be pretty seamless.

Decline, and trying not to fall

We bought our current bed about six years ago. Rather earlier than expected it became quite soggy and uncomfortable. I had a thought… if we were to buy an electrically adjustable kingsize bed to replace it (one with two separate mattresses side by side) we could stay in our bedroom together for much longer. I did some online research and asked The Adjustable Bed Factory to give us a home demonstration and a quote. The sales person brought a small bed into the house, we both tried it and tested the electric controls. There was nothing not to like (apart from the price!) and, unusually for us, we placed an order straight away. Just four weeks to wait.

We also ordered an electrically operated garage door in March. My wheelchair route out of the house will be through the garage and I need to maintain some independence. MND is an incredibly expensive illness for people and I purposely haven’t done all the sums. Oh well, I guess we save money by missing out on holidays during the pandemic, and I was going to trade my car in this year for a new electric one. That plan is now definitely out of the window as I don’t think I’ll be able to drive for much longer.

My capabilities declined a lot during March. My left hand and arm became extremely weak and I could no longer write properly with my right hand, buttons became impossible and zips quite tricky. There was just no strength in my fingers. Another example of the problem is that it was now really difficult to lift a plate or bowl out of a cupboard at eye level. It was as if everything weighed ten times as much as normal.

I also began to find it incredibly difficult to sit up and get out of bed. The grab rail secured under the mattress had been great, but my arms had weakened a lot.

I suddenly found myself uncertain about coming down stairs (there are two flights from our bedroom). My legs were much more jerky and my brain seemed to be warning me that stairs were now dangerous. I was desperate to avoid tumbling down the stairs and so we resolved to get the stair lift installed soon. And, having invested in the new bed for our room, we would now need to get a second stair lift for the second flight of stairs. More expense, and the trouble is you don’t know how long any of these measures are going to work.

Winter lockdown

January and February were very long months – unable to see family and friends, and stuck at home with nowhere to go. Lots to do though.

The first job to get done was to have our bathroom reconfigured, replacing our old ‘step to enter’ shower with a wider, level access shower suitable for eventual use with a shower wheelchair. Ironic that we could have the skilled plumbers working in our house for two weeks, yet our family members hadn’t been able to visit for months.

We also had visits from the local physiotherapy and occupational therapy teams. Brilliant support from both, although I’m still not fully sure where the boundary lies between their responsibilities. However, the result was the delivery of a brand new four wheel rollator, a new, sturdy walking stick, supportive collars for my aching neck, a set of tailored exercises, raised toilet seats, and a brand new profiling ‘hospital’ bed for my newly designated ‘study bedroom’. I was also measured up for a rise and recline chair and a power wheelchair.

It’s evident that I’m being talked about in case review meeting by the speech and language therapist, physiotherapist, occupational therapist, and the community nurse from the Peace Hospice in Watford. At first glance the various services don’t appear to be joined up to the patient because there are so many people to deal with, but there’s plenty of evidence of information sharing and co-ordination.

In terms of MND progression during this time, I experienced a noticeable loss of function in my right hand and arm, which was quickly catching up with my left. This meant I could no longer get dry when getting out of the shower and could no longer get dressed. This put more pressure on Sue who was having to do more and more. Above all, the worst developing symptom was exhaustion – extreme tiredness after a shower, after getting dressed, after anything really.