The moving finger

Our Xmas has been marred by what appears to be an infection in Jo's right index finger. It began on Xmas Eve and at that time we assumed it was gout, as it manifested as a reddish swelling on the knuckle.

It laid Jo low on Xmas day and sapped her strength such that I called an emergency doctor on Boxing Day. By this time the swelling and redness had progressed toward the wrist. The doctor's diagnosis was infection and she prescribed 1,000 mg a day of fluxocilin.

This has rocked Jo even more but the swelling does seem to be abating. We shall see if the moving finger of fate, having written another chapter, moves on.

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Fiat Lux

Jo and I would like to take this opportunity to wish everyone an enjoyable festive break.

Although there has been a large break in Jo's rehabilitation occasioned by the physiotherapist falling ill after her return from holiday Jo does seem to be making some physical progression. Her confidence is still the main thing and we plan to work on that together over the holiday period with simple stands and walking on the spot.

Although the outlook for next year is bleak and I shall have to devote more of my time to earning some much-needed money we remain positive.

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Making Changes

After a five-week hiatus, caused by the insurance company taking that length of time to process the paperwork for further treatment; something they promised would take five days, Jo's physiotherapy resumed today.

Given the length of time she had been without walking Jo proved to have actually gained some mastery over her errant left leg. Her confidence and muscle tone have suffered though and she got tired earlier and experienced a few moments of anxiety when attempting transfers or negotiating a threshold.

On balance though the progress was pleasing and, with the carers finally beginning to walk her daily we hope she will achieve her immediate goal, that of walking with the assistance of one person and the zimmer frame, within three months.

Thereafter the next goal is walking with the aid of a three-legged stick. As the person assisting her in the immediate goal is solely there to keep Jo's left hand on the zimmer frame, this next goal obviates the need for that person except as psychological support and will be a big step change.

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Majik Thornton Brown - 1988-2010 RIP

Our companion of 22 years sadly suffered a stroke this morning, caused by a massive brain tumour. He was peacefully put to sleep and a sadness has descended on our household. He will be missed.

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Mind and Matter

We have another week's hiatus in Jo's rehabilitation as we await the insurance company's approval for further treatment. Hopefully the revised care plan will be put in place this week and Jo will be walking every day from her bedroom to the bathroom.

Jo is now remembering her struggle with death in August 2008. The memories are brief, disjointed and painful but very clear. Perhaps this is part of the reawakening of the brain that the neurologists seemed to think was a possibility back then? Certainly it seems concurrent with further subconscious action driving conscious action.

When Jo is asleep in her chair her left leg lifts up, the left foot is turned up at the ankle and then the foot is placed down on the floor in a deliberate fashion that is more assured than her waking mind can muster. I fail to see how the physiotherapists and neurologists can dismiss this as a reflexive and involuntary action and it seems to vindicate my thesis that the thoughts and actions start in the subconscious mind and are then manifested in conscious thoughts and actions.

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Well done Jo

Today was an important day for Jo. Her care agency were here to assess Jo's walking and transfers in order that they might assist her with both on a daily basis. This is important because frequency is the key to effective rehabilitation.

Beforehand Jo was apprehensive about how well she would perform these tasks as the pain in her feet from the increased stiffening of the muscles has been quite intense of late. So much so that Jo was unsure if she could even stand, let alone step.

Credit must go to Jo's carers, who took the extra time this morning and made the extra effort to coax Jo into standing.

This had a remarkably efficacious effect on Jo's confidence and, once the physiotherapist and care assessment assistant arrived, Jo managed the crucial walk from her bedroom to the wetroom and the transfers from her glideabout to the chair with aplomb.

The care assessor has therefore supported the carers assisting Jo with these on a daily basis, which is sure to help Jo become more mobile more rapidly.

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Discombobulation

After a week's hiatus, occasioned by what seemed to be a recurrence of the gout that last plagued her in July, Jo's physiotherapy resumed today.

Late last week our GP paid Jo a home visit as the steroids used to treat the gout did not seem as efficacious as before. After a physical examination of both feet he determined that the bio-mechanics of Jo's feet had been affected by the prolonged inactivity and Jo would need the specialist attention of a podiatrist to rectify this.

The physiotherapist conducted a fairly thorough examination today and concluded that there is muscle and tendon distortion on both feet, caused by the afore-mentioned inactivity. In her right foot it is aggravated by an old injury dating from her childhood, a broken big toe. This makes her big toe point upwards and thus affects the balance from the instep to the ankle.

In her left foot the muscles and tendons on the left side are stretched and those on the right shortened. This is why her foot at rest and when standing tends to roll over onto the left side of her foot. The pain on the left is further aggravated by the neuropathic pain.

Rectifying both requires Jo to undergo considerable nausea-inducing pain as she force stretches the muscles and tendons in each foot. A splint on her left leg may help but there is no way of avoiding the pain.

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A bout of gout

Just when things seemed to be improving Jo has been struck by a bout of gastroenteritus, possibly carried by her carers. This has had the knock on effect of triggering an attack of gout in her right foot.

On Thursday the gout was relatively mild and may have even helped Jo in her physiotherapy as the pain in her right foot forced her to put more weight on her left foot. You can see this in the video.

Unfortunately gout often gets worse before it gets better and this is the case now. Despite starting a course of steroids to reduce the inflammation Jo has become bedridden as the pain in her right foot has prevented her from standing. Let us hope it has subsided in time for Monday's physiotherapy session.

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The connectedness of things

There is a trend in the IT world I work in to talk about a world of connected things where your mobile talks to your car and your car talks to the petrol pump and so on and so forth.

In this modern utopia the collective data, or knowledge, as the seers would have it, is magically transmogrified into wisdom by dint of its sheer volume and its interconnectedness, into wisdom.

The "new age thinkers" (sic) also claim we are living in a new age of spiritual wisdom engendered by the interconnectivity of all this data, claiming that, "The new technology IS the new mythology. The shimmering global web is consciousness, is the digital web connecting us."

Mythology means the creation of myths and like all myths the devil, or god (take your pick) is in the details when it comes to translating a mythology into reality.

This fact was brought home to us during today's physiotherapy session.

One of the things stroke victims have to deal with is the lack of muscle tone on one side of the body affecting bodily functions such as chewing and defeacation. Control of those movements that all of us take for granted have to be painfully relearnt.

One of the retraining procedures Jo and I use is a daily regime of cafe con leche for breakfast. The warm milk and strong coffee triggers a predictable bowel movement that Jo is learning to recognise and control.

When the physiotherapy sessions started I realised they followed on from these ablutions but thought no more of it. Then today a neighbour called at just that crucial time when Jo would have been practising her daily toilet. Consequently the physiotherapy began without Jo having made this daily movement.

When Jo started to walk her anxiety was immediately apparent and we all struggled to understand the source of it.

It was only when Jo walked to the bedroom and expressed a wish to be placed over the toilet that the penny dropped.

Sure enough, once she had emptied her bowels her walking was much more assured although still a little hesitant, as you can see in the video.

Proof that the interconnectedeness of things is far more sublime than any of us realise and governs our every step in ways we cannot foresee or control.

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If only...

CAPRICORN (Dec 22 - Jan 20)

Your Week Ahead: You have been trying, for some while, to bring about a significant, permanent change. You have come close to success but you have not yet fully grasped it. Like soap in the bath tub, your great objective keeps slipping through your fingers. Something goes wrong or becomes mysteriously complicated. You have almost begun to despair of ever getting a satisfactory, long-lasting result. You are, though, much closer than you realise to making a major breakthrough. All the preparations have been made. The spade-work has been done. Overcome your fear of failure and take one more brave step.

Sent from the 'Jonathan Cainer Horoscopes' Android App. Jonathan Cainer's Capricorn forecast , Sun, 03 Oct 2010

I regard horoscopes as random wisdom that may be apposite dependent on chance. All I can add to this prediction for Capricorn, which Jo and I both are, is "bonne chance" or "your words to God's ears."

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Moving quickly on...

Jo did really well with her walking today despite suffering from a slight hangover. We had both drunk too much wine last night, probably as a result of anxiety over the aborted conservatory project. This made Jo feel a little unsteady when standing but, once she was standing, she walked from the front door to the kitchen and thence into the front room at a cracking pace.

She had renewed her determination the night before over the bottle of wine we shared and so perhaps, on balance (pun unintended), the wine didn't do her so much harm after all.

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Making Movies

A short video this week, shot so Jo could see herself walking and thus demonstrate to her mind that she can walk. At this stage it is 90% about developing Jo's confidence in her ability to walk and 10% about developing the muscle tone that has atrophied during the past two years of enforced inactivity.

As you can see we only have the narrowest of hallways to practice in. Jo really needs the 3 metre run the addition of a conservatory on the back of the house would give her so please give anything you can using the donate button on the right to help this to happen.

Strong forward motion

Another physiotherapy session today and Jo showed further improvement over Monday. She is now back to where she was before the week's hiatus while the insurance company shuffled papers.

Her stands are getting stronger and she was also able to perform a stand and swivel to get back into her chair after the session.

90% of her walking was assured and from where I stood, behind her, looked like you or I walking. About every fifth step Jo hesitated and had to make visible effort to step the left foot but overall she made very strong forward motion with minimal assistance from the physiotherapist.

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Regaining Lost Ground

After a week's hiatus, occasioned by someone at the insurance company being unable to open an email attachment, Jo's physiotherapy resumed today. We now have six weeks of twice-weekly sessions secured.

Jo has been experiencing neuralgic pain in her left knee and ankle for the last week, no doubt caused by the relative inactivity after two weeks of physiotherapy finally awaking Jo's left side.

Today's session bore that supposition out, with Jo more hesitant and unsure than the previous session. She rallied and finished the session with a good stand and swivel but it is frustrating to see her have to regain ground lost through no fault of her own.

I am still struggling to get the money to finish the conservatory, which will provide the necessary space for Jo's exercises. Planned funds have failed to materialise and the banks are not helping me get a new venture off the ground.. Funny how the banks caused this crisis and everyone else carries the can.

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Picking up the pace

Jo had another physiotherapy session and she is really showing almost daily improvement, proving my thesis that sustained, intensive physiotherapy is key to any recovery.
She began by practising standing from a sitting position, pushing herself up from the chair rather than pulling herself up using the rotunda. We have been practising this on her stands when we can and it seems to be paying off. Jo was better than last week straight off and, by the end of several stands was getting quite good. Good enough that Jo herself could feel an improvement.

Then came walking the 18 yard stretch in the hallway. My role in this is to follow behind with the wheelchair, both to provide psychological assurance that she cannot fall to the ground but also to have a seat ready for when fatigue does overwhelm Jo. I reached down to unlock the wheels on the chair and by the time I looked up again Jo was halfway down the hallway, a good two yards away from me! She continued to walk at this relatively brisk pace around the corner and on to the kitchen. Meanwhile the only support the physiotherapist was providing was to ensure Jo's left hand was gripping the zimmer frame.

This is truly an advance, both in the speed and assurance with which Jo was walking and in the confidence with which she navigated the corner to the kitchen. Previously corners have caused her to lose her nerve but there was no hesitation this time. Jo repeated the feet in reverse, walking from the kitchen to the front door, walking at the same pace and navigating what was now a left-hand corner with calm assurance.

Thereafter Jo returned to her chair in the front room and performed a stand, step, swivel and sit with a similar speed and confidence.

If she keeps this up she will be walking by Xmas. My main concern now is finding the money to build a conservatory off Jo's downstairs bedroom to allow her to sit in the morning sun and to provide more space for her to practise walking. Earlier in the year I had the money but the extra time spent recovering from her head injuries has eaten into my reserves and, at this point in time I truly don't know where I'm going to find the money. Find it I must. Jo's recovery is proceeding so well I cannot let her down at this crucial stage.

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Learning to stand

Another physiotherapy session today and Jo continues to make progress walking, navigating a corner as part of an 18 yard "run". She really is walking well, receiving only psychological support from the physiotherapist just by virtue of her being there and the only physical support from the zimmer frame.

Jo seems to have forgotten how to stand though, a situation fostered by reliance on the rotunda for standing and which sees her trying to pull herself up via the zimmer frame where she should be pushing herself up as we all do.

A few practice sessions at standing and stepping to sit from standing with the zimmer frame saw some progress however. We shall see at her next session on Thursday how much of that learning has cemented itself.

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Getting better all the time

Jo had her first session with the private physiotherapist today. Her walking was very accomplished and saw her stepping and placing the left foot with aplomb.

It was standing that Jo had the most trouble with, something Jo was doing without concern before the fall. Now her fear of falling when standing kicks in as that was the point at which she fell.

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Rehabilitation (re)starts here.

Jo saw the Neuro-physiotherapist today for an initial assessment for the course the insurance company has agreed to fund. She has four initial sessions, the first and last being assessments, the fourth one being to recommend a further course of treatment.

Again we saw great improvement with Jo able to flex her left leg at the ankle and push her left hand against pressure, albeit largely from the shoulder.

Jo managed a stand with little assistance athough she was tending to favour the right. She has her second session next week and we agreed the recommended course should include resumption of the hydrotherapy interrupted last year.

The hole is fixed

We travelled to Cambridge today so the consultant neuro nurse could look at the progress of Jo's head wound. She professed herself pleased, saying the wound was fully healed and the flaking skin at the bottom of the wound was an adult form of cradle cap, which is a benign condition that will respond to treatment with oil and special shampoo.

One step forward...

It really has been a case of two steps back for Jo. After her last physiotherapy session, which made her feel positive for the first time, she spent a week in respite while a new floor was laid in her room. The respite home was full of people over 80 who were largely preoccupied with waiting for Godot. I thought this might depress Jo but she remained in remarkably good spirits. The place was unbearably hot, during one of the hottest weeks of the year and this did induce a general torpor to Jo's demeanour and meant she spent a week with even less physical activity than before.

Upon her return home this manifested itself in a reduced capacity for standing and I even saw some return of the hemispatial neglect which had been evident in the early days.

She then saw a recurrence of the gout that has plagued her of late, brought on by her medication.

All of this conspired to make this month's physiotherapy session largely futile and it was depressing for us both.

She is back on steroids for the gout and we hope that clears up in time for her to start the course of intensive physiotherapy the insurance company has agreed to.

Things seem to continuing apace

Jo has had her new wet room for over a week now and it seems to be having an efficacious effect on her rehabilitation as well as affording her great delight and relief at being able to bathe properly again.

The stimulating effect of the shower on her left side is very therapeutic and actually causes her index finger on her let hand to straighten out each morning.

Another corner turned

Jo had her first physiotherapy session in two months today and it evinced a remarkable degree of improvement. I had already observed that Jo was moving her left foot at the ankle. This is more so when she is in a prone position that sitting but there is definitely more movement there. Neuralgic pain accompanies this but that is the nature of the beast.

Today Jo managed to walk her usual 9 yards without any verbal or physical help from the physiotherapists. This is most encouraging and Jo herself professed that she felt more positive than she has before about her own abilities. Hopefully another corner really has been turned.

Hopefully things are getting better.

We went to Addenbrookes yesterday so the neurosurgeon could look at Jo's head wound. I was concerned that some dry flakes below the still-healing wound were residue from a discharge but he was firmly of the opinion that it was just dry skin. I hope he is right. Jo is getting worn down dealing with all the complications arising from the fall in March last year.

We may be getting back to normal

Jo seems to have recovered from the second bout of gout and is in much better spirits. We don't have another physiotherapy session scheduled until next week so we shall see how she has improved or not. She currently has nerve pain in her left ankle which, although painful for her is a sign that some movement is returning in that area, hopefully decreasing the limb synergies.

We currently have the builders in converting the downstairs bathroom to a wt room for Jo and she is looking forward to that. A year of bed baths is not fun.

Another setback

Jo's gout has returned in her left foot with a vengeance, forcing her to cancel further physiotherapy. The doctor has prescribed steroids for the gout and antibiotics for cellulitus on her leg. Being bedridden again is depressing for Jo and a strain on me as I struggle to cope, yet again, with the further demands on my time this causes.

Progress continues

Another physiotherapy session today and Jo has made huge strides since the last session, almost a month ago. She is now lifting her left foot and placing it all by herself again. Although she has been here before the rate of re-recovery is encouraging.

Regaining lost ground

Jo began the arduous process of regaining the ground she has lost over the last three months dealing with the infection in her cranioplasty wound.

It was not easy and the effort physically drained her but she managed to walk from her bedroom to a point halfway down the hallway before exhaustion prevented her from walking any further.

She was not walking as well as before and required assistance placing her left foot but we were all heartened by how much she has rebounded in such a short space of time.

It's been weighing on my mind...

... and even more so on Jo's mind, both figuratively and literally, this hole in her head. The stitches were taken out today and hopefully the year-long saga of this is over. The wound looked well-healed and we can only hope this particular episode is over and a weight has been lifted from Jo's mind, body and soul.

Inspiring thought for the day.

"The body posture is a physical reflection of a state of being - mentally, emotionally & physically If you want to talk to body parts, you better start with the heart." - Karen Rohlf from Dressage Naturally,

It strikes me this applies equally to human beings.

Left, right, left…

When Jo first began the long process of recovery from this she had a bas case of neglect, where she did not see things to her left and was generally unaware of the left side of her world. Indeed there wasn’t a left side to her world. This was something I now realise was manifesting itself before the operation. Frequently I would puzzle over Jo’s placement of pictures on the wall, they wouldn’t be centred but placed far over to the right.

As she began the process of recovery the first thing to return was the visual aspect, with objects on her left slowly coming into view, sometimes with prompting but increasingly spontaneously. What was slower was the orientation of her body. When she was in the recovery hospice she would almost always lean to the right and be unaware she was doing so. That improved once she came home and she has been sitting in her chair quite upright and centrally since early last year.

Lately I have observed that, when she falls asleep in the chair she leans far over to the left, a complete reversal from those early days.

Yesterday the physiotherapists came for a re-evaluation of Jo since the problems with her head wound forced her to abandon all physiotherapy. They too found that she was actually placing more weight on the left leg than the right, causing some pain and affecting her ability to balance.

We shall have to se what the consultant neurologist makes of this when he examines the progress on the sutures in her head wound.

New hope

Jo underwent surgery to suture close the hole in her head today. Despite a nail-biting day, with surgery being postponed until 15:30, the procedure seemed to go well with no complications.

After recovery she was brighter and more alert than I expected and ravenously hungry as well she might be, having been nil by mouth since the previous evening.

Her vigorous chewing on the sandwiches that broke her fast did aggravate the wound such that it bled, so I left her for the evening not entirely free of anxiety.

Yet that anxiety is mingled with the hope that this somehow, in some ineffable way, signals a new dawn. The previous night Jo eschewed the rotunda to transfer from the wheelchair, electing to stand and step and today I observed her move her left hand from the wrist, the first time I have seen her do this. Let us hope these are signs of an early spring for her.

A Stitch In Time

We saw a consultant neurosurgeon about the hole in Jo's head. The first approach will be to abrade the edges of the wound, removing the hard scar tissue that has formed there, and suture the hole closed.

Although he could offer no guarantees this would work it is preferable to a graft as wounds heal better from below.

The concern is that an infection may be hiding on the titanium plate. If that proves to be the case the plate will have to be removed, replacing it with a new sterile one once the wound has proven to be clean.

Let us hope the stitches are in time to save Jo from more surgery further down the line.

Jo needs more complications to cope with…

… like a hole in the head and that’s exactly what she’s got. A 5mm hole where the seat of the infection was, on her right temple, exposing the titanium plate. Anxious to avoid another bout of surgery Jo has convinced herself this will heal of its own accord.

It is being bathed daily by the District Nurse and, while Jo is still coping with the side effects of the antibiotics, it seems best to keep an eye on it but I suspect a skin graft will be required at some point. As there is no periosteum there it is hard to see how the skin can grow over the hole.

If it’s not one thing…

… it’s another. The antibiotics Jo is taking to fight infection in the wound from her cranioplasty seem to have a beneficial effect on that area, with no visible signs of the infection in the form of discharge any more.
Unfortunately they seem to have had a negative effect on her kidneys, which have only been functioning at 30% efficiency for some years prior to the craniectomoy in 2008.
She now has severe stomach pains, pains in her back around the kidney area and general pain all over her body. She also has really bad gout in her right leg. All this is consistent with hyperuricemia, which is caused by an excess of uric acid in her blood. The kidneys filter uric acid to the blood so it looks as though their function has been impaired by the antibiotics.

Still progressing

Jo had a good physiotherapy session today, walking from the front door to the kitchen with the assistance of the zimmer frame and the two physiotherapists. She did not require assistance to lift and place her left foot at all. The only support she required was encouragement and cajoling to help her navigate corners, which is when Jo becomes anxious and her muscles tense up.

Once in the kitchen Jo performed several sidesteps. She is gaining power making sideways movements with the left foot but did require more assistance with this.

Fighting infection

We went to Addenbrookes today to see Jo’s neurosurgeon. The wound from her cranioplasty has not healed and is weeping. The neurosurgeon confirmed it was an infection and prescribed a six-week course of strong antibiotics. Let us hope that clears the infection as the alternative is to take the plate out.

Physiotherapy starts again

The first physiotherapy session since the 9th of December last year. Jo has a bad cold so only managed a few steps but did perform two stand and step transfers to and from her chair. She stepped backward for these, the first time I have seen her do this and an encouraging sign. The physiotherapists thought Jo showed definite improvement and talked about her doing transfers like this with the carers in the near future.