IPH Health 5th April 2018

IPH Health 5th April 2018

The months of February and March were very busy with hospital visits and related events. I am writing this on 5th April 2018, to record the developments in my health story. This has ended up quite long so I decided to provide contents for the headings, and thus links:
20th February
The journey home and its coda
Help with breathing at night
More hospital visits: tests needed but MRI scan impossible
The lumbar puncture
The end of travel independence
CT scan and more electromyography
Riluzole
Home visits by therapists and Macmillan
Effects on my life
Remaining life goals
Outlook

20th February

I was asked to go once again to Frimley Park Hospital on that day, this time to see a neurology consultant. When I met her, and later looked her up, she proved to be a kind as well as learned young lady expert with a PhD among the many groups of letters after her name. I was shown into the outpatients room where she saw me that first time. She told me that the results of the electromyography on 29th January indicated that what I have is motor neurone disease (MND). As you can read in pages about it at the NHS, the MND Association, or indeed Wikipedia, this term (MND) is used in two ways, sometimes with a supposed distinction depending on the spelling on the middle word with a final -e or not (but that is not guaranteed everywhere):

I did not know all of this when I was told that it was reckoned that I had it; but I had an idea that it was the illness of which Professor Stephen Hawking was (famously) a victim. (About three weeks after I was told I had it, we had the news that Stephen Hawking had died, on 14 March 2018; and then a few days later there was a news story that one professor of medicine had publicly wondered whether this diagnosis 55 years earlier had been correct. But that is another story, for now.)

Because of my ever worsening problems with breathing while lying in bed trying to sleep, just after telling me that I had MND, the neurology consultant then phoned to a nurse consultant man who is an expert in respiratory problems. He then came from his department at Frimley Park to the outpatients area, bringing me a machine to help me breathe in bed for sleeping: a BiPAP A40 Ventilator. I was shown how to put on the mask and how to use this machine, and then I had to carry it in its bag and walk to my car and come home, and set it up by my bed to use every night since. Hwever, before I left the hospital that day the neurology consultant gave me a prescription for riluzole and the nurse respiratory consultant accompanied me down to the on-site pharmacy where I was in due course given the medication to take home with me.

The journey home and its coda

I did not hurry on my journey home that day. On my way home, I knew I must use the fact that I was near Farnborough to do some shopping; I suspected that my weakness would start to limit my travel mobility quite soon. So from the hospital I did not turn straight back onto the A331, but continued on the A325 first down to the A327, then Solartron Road, and went into Maplin and bought a USB mouse for one of my PCs. I now wish I had bought two or three; a week later (28 February 2018), Maplin went into administration putting 2,500 jobs at risk. It was all over the news (though less noisily than Toys R Us when that also happened). Why? I had started to find that I had problems using the cordless mice which I had, with my weakening fingers and the way their buttons work. The Maplin one works slightly better now and I wish I had also got one each for two other PCs that I use. Next, I went to the big supermarkets to stock up on food: Tesco in Aldershot and Sainsburys in Farnham, both just off the A325 south of there. The A325 goes through the town but I took the A31 just outside, and decided to take not the A325 to Bordon, which had had holdups when I drove north earlier, but the A287 via Churt ... although the lane from there to Headley was closed so I decided to go all the way to Grayshott, and then to call on some old friends there to tell them my shocking diagnosis. Some hours thus passed before I got home.

I had barely put away the food I had bought in the freezer, the refrigerator and the kitchen cupboard when the doorbell rang! It was my lovely, kind lady GP from Badgerswood Surgery in Headley village; it was about 19:00. Evidently the neurology consultant lady had telephoned her to tell her what she had told me about my diagnosis; and my GP wanted to see that I was all right in the sense of coping with the rather shocking news, and to be sure that I did indeed know how to put on the breathing mask, and operate the ventilator machine, so that I would be able to start learning to use it while sleeping every night for the future. She had me unpack it all from the bag in which I had brought it home, and assemble it (attach hose at both ends ...), then switch it on and breathe using it. After that, we talked for a few minutes, but it was nearly 19:30 when she said she must be going, because she had more work to do before she could finish for the day ...

That she is such a devoted, caring physician means a great deal.

Help with breathing at night

Over the following few evenings I got used to using this ventilator: I had to strap the mask on, and switch on the machine, then lie down and arrange the hose joining the two above my pillow before pulling the duvet over myself and trying to get comfortable. Mind you, with my weakening arms, just pulling the duvet over myself, and arranging it tidily enough to be warm and comfortable, is a major struggle every time I have to do it now, often several times every night.

Anyway, by the weekend (24th February), I was able to get to sleep with it on and helping me to breathe, so that I could now lie flat on my back and breathe OK and get a number of hours of sleep during the night. This was good, because the position I had needed to use for sleeping for many months was becoming a problem: I had been lying on my side. Originally I had lain on my left side for some hours and then, after waking in the night as was usual, I would lie on my right side; but I had started to find, for some reason, that I would struggle to breathe (before I got the machine) when lying on my right side. However with the weakening of my arms with the disease, I had started to find that after a while the arm on which I was lying would ache, during the night and the next day too. So after a week sleeping on my side with the machine, continuing to have bad aching in the left arm on which I mostly lay, I tried lying flat on my back, to save my arms. This did not allow me to breathe enough until I examined the settings of the machine, and changed the strength of the air flow from the lowest, which it had when they gave it to me, to the next level. Since then I have slept on my back, which had been quite impossible without the machine since the autumn, and the aching in my arms during the night and the day after is reduced.

More hospital visits: tests needed but MRI scan impossible

My next attendance was for respiratory tests because of how the weakening of muscles, including diaphragm, by MND makes breathing difficult. In two different departments, respiratory and AECU, the medical people who saw to me were young Portuguese ladies; I asked the second one whether she knew the first one because they were the same nationality and working there; but no: she said there were many people (young women, it seemed) from her country working at Frimley Park Hospital, and they did not, just because they were all fellow countrywomen, know each other. However they were all lovely, very competent specialists in their work looking after and working with me; testing my breathing pattern was what one did that day.

Next, the consultants at the hospital needed more tests, all in order to try to find out whether my condition was definitely MND and, if so, which sort. First, I was asked to attend on 5th March for an MRI scan, but there was a snowy spell just before that and on Friday 2nd March there was 4 or 5 inches of snow on the ground in Headley Down, covering the hilly road outside my front gate as well as everywhere that I could see of my garden. The weather forecasters were saying that this might well continue into the following week, and my appointment was for just after 9:00 in the morning so I would have to set off in my car at about 8:00 when it would still be frozen from the night’s low temperatures, and the news kept telling us that the police were asking everybody not to make any trips on the roads that were not absolutely essential; so I telephoned the MRI scan department at the hospital and asked them about all this. They agreed that it would be best to avoid making the journey under these conditions, and agreed that they would be able to use that slot for somebody else. By Monday morning the snow had gone though, so I phoned about getting an appointment (in fact I was up at 7:00 but they confirmed that my old slot that day was taken already). However, in the discussion on the phone about what was involved, I learnt that this MRI scan process does involve the patient lying on their back in a tube in the big scanner machine for quite a long time; however, I cannot do that without suffocating now, unless I use the ventilator. I told the lady on the phone this. Making enquiries, it was established:

The consultant had to be told that there could be no MRI scan.

The lumbar puncture

I was next asked to attend to see the neurology consultant on 9th March, but around 18:00 the evening before a lady telephoned and asked me to go instead to the AECU rooms where I saw the consultants in acute medicine whom I saw on 19th December 2017. The neurology consultant would come down and see me there, instead of in the department where I had seen her before, which had been the original appointment plan.

When I went to AECU on the Friday morning, the consultant there did the lumbar puncture, taking a number of syringes full of spinal fluid to do diagnostics. Then blood samples were also taken for further analysis. I was left to rest for some hours and the neurology consultant came and discussed the situation. Two interesting aspects of the situation emerged.

Firstly, on the issue of me being able to breathe while undergoing an MRI scan, she told me that the scan department technologists had contacted the manufacturers of the scanner about cases like mine. They had confirmed that with the machinery as designed, with the patient having to be slid into a horizontal tube for (let us say) more than half an hour, it is impossible to do an MRI scan of a patient with my condition. The needs of magnetic resonance imaging are incompatible with the properties of the ventilator electronics and the design of the mask I was using (with magnets on the straps).

Secondly, having read about the different kinds of MND, I asked her whether it might be that I had not the most common type, amyotrophic lateral sclerosis (ALS), but perhaps instead the type of MND called progressive muscular atrophy (PMA) because the main weakening effect was in my arms and hands, and she agreed that this was a possibility.

Note: the MNDA website says that whereas correctly MND is (when used correctly) an umbrella term for all forms of the disease, in the USA, ALS is used as the umbrella term. In Britain, however, it seems that the name MND is used to mean ALS, as well as for all types. This is just one example of chaotic medical nomenclature usage that I have been discovering.

On 9th March, I had been asked to arrive for 10:00; and I was in the hospital until about 15:30 that day, as I recall. Again, after all the above, once I got back to my car, I stocked up on my simple range of foods on the way home.

When I got home at the end of the day, I knew that I was so tired that I would have to keep testing myself at the steering wheel in the coming days, before any future outings, if I was ever going to drive myself anywhere again.

The end of travel independence

As it turned out, this visit on Friday 9th March was indeed the last time I drove myself anywhere in my car. I had nowhere to go for some days, but in the middle of the following week I needed to move my car from its hitherto usual position on my drive, just opposite the front door, to a place in front of the main door of my garage, nearer the hedge on the downhill side of my garden, so that my friends, next door neighbours, could bring a car in to load up with logs and firewood which I had been cutting for them in previous months from trees and other timber I had in the garden. I moved the car, but realized that my arms were (again) weaker than before; and the next day (Thursday 15th) I sat in the car again just to see how I felt about venturing out on the roads again, in traffic and so on, and I decided that the further deterioration since Friday 9th March and even since I had done the brief manoevre to the space in front of the garage meant that I had reached the point where I could never be perfectly sure again that my arms were strong enough to steer, and react as might be required, if any problem situation arose on the roads in traffic. Indoors, I made phone calls and notified DVLA and my insurers that I would not be driving a car on the roads again. I then made my first telephone call to the kind people at Headley Voluntary Care about getting help for my future journeys to the hospital.

CT scan and more electromyography

Then I had to attend at Frimley Park Hospital again on 21st March for more blood sampling by a phlebotomist, and then a CT scan, for which I had to take my ventilator with me. These were in departments at opposite ends of the Hospital so I had quite a walk along the corridors from the eastern end to the west. Next day, 22nd March, I had to go there again, also to see two practitioners. The first was the consultant who had seen me on 29th January, for a repeat electromyography investigation to try to assess how fast my motor neurone system was deteriorating as the nerve cells died. Then I had to see the neurology consultant lady for the third time.

For both of these trips, I had to call on a benevolent voluntary service in Headley village of very kind people who help invalids such as I had now become to get to and from hospital: Headley Voluntary Care. I had to call on them a third time to take me to Farnham Hospital on Tuesday 3rd April for an appointment with a thoracic consultant. I look forward to them helping me with any future trips to hospital which I have to make while I can still travel anywhere without additional help getting out of the house and round the hospital building.

Riluzole

The neurology consultant wrote to me and my GP about the results of 22nd March, notably that my motor nerve condition was measurably worse since 29th January, which was after all just 7½ weeks earlier. This is the empirical explanation of what I had subjectively noticed which had led me to stop driving my car. While with her I had also asked her about the headaches that I had often endured recently (despite taking as much paracetamol as its instructions allow), noting that headaches are a side-effect, listed in its accompanying small print, of the riluzole which she had prescribed on 20th February, and which I had duly been taking morning and night. This was because its accompanying small print said that you must tell the doctor of any such side-effect. The consultant agreed that I should stop taking the riluzole; this is permanent. She confirmed this in the letter about this consultation to me and my GP.

Home visits by therapists and Macmillan

On the morning of Tuesday 3rd April, before an afternoon trip to Farnham Hospital, I was visited by two more medical ladies: an occupational therapist, and a physiotherapist, who arrived at 10:00 according to an appointment they had phoned and made with me the week before, to discuss my likely future needs and problems in daily life as the illness gets worse. The Farnham Hospital visit was to see a thoracic consultant to check on my chest and breathing system. This was with yet another young lady consultant doctor.

Then on the morning of Thursday 5th April, according to an appointment made on a previous visit, I was visited by a Macmillan Clinical Nurse Specialist from Midhurst Community Hospital, who was accompanied by two more medical colleagues, one a doctor, to discuss other aspects of my future needs. It it all going to get quite complicated keeping life at all livable ...

Effects on my life

That is an outline, at least, of how my life has gone with regard to this diagnosis. One notable change apart from the fact that I will not be doing any more gardening or firewood cutting (for friends) in the future is that I had to tell my friends in Mensa that I was now going to be unable to continue as a volunteer for the society. Since June 2000, I had been crossword editor for the South East Region monthly newsletter; since 2003 I had myself been setting six (therefore half) annually of the monthly cryptic crossword puzzles that have filled the back page of the newsletter — and, many Mensans have been kind enough to tell me over the years, delighting them so that it is the first thing they have turned to every month when the new Mensa magazine arrives in the post. I was editor of the newsletter for 60 issues from June 2000 to June 2005 before handing that role over to other members; but I had been begged to take it on again in late 2016 and had edited the issues for February 2017 through April 2018. For that April 2018 issue, I had recently needed to write my medical story in outline, to tell my Mensa friends the core of what I have told you here, and to talk about the limited time I may have left, and my waning abilities to do work even as unphysical as working at my computer; and I discussed my thoughts on some things I would perhaps like to try to achieve before I die. Indeed, since the April issue arrived, I have had some lovely messages wishing me well and thanking me for what I did for fellow Mensans with the newsletter — and the crossword in particular — over the years; that was lovely, and has cheered me despite my condition and the gloomy future, about which neither medical science nor all the caring of many lovely people can do much (anything) to change my physiological future; but the medical folk, and friends and neighbours, are all being very kind, as are close family too.

Remaining life goals

As I told my fellow Mensans, the main possible goals for my remaining powers and time are three:

Outlook

So that is the story to 5th April of my journey from a not especially athletic, but reasonably healthy 67 year old with perhaps decades more of happy active retirement ahead of me, to an invalid with rapidly weakening muscle strength in my arms, hands, legs and breathing system — who already struggles to put on and take off clothes, to open packets of food and eat, to hold a pen or pencil and write anything, to type, and even to use the mouse on a computer, so that I will soon have to start using speech recognition software, and who cannot any longer drive myself anywhere by car.

I am quite pleased to have managed to type this page ... I hope to keep adding little bits to this website; but there will be no more   f&f photo album pages of long walks in the countryside. Just to give one example.