Monday, 24 August 2015

The July I want to Forget

It's no exaggeration to say July was the 4 worst weeks of my life and I feel things have now changed forever. It started at the end of June when I started feeling a bit rough. I have been battling with oral candida for ages and I guess the constant swallowing of it was taking its toll. But more seriously it had probably been the cause of the chest infection that on 2nd July took me to the first of three hospital admissions. 

Around 11am I started having breathing difficulties because of mucus in my chest I couldn't cough up. Ambulance was called and when my oxygen saturation dropped to 80% I was taken to hospital in my car sandwiched between 2 ambulances with sirens on. Alarmingly I was taken to the resuscitation area where with the help of nebulisers and suction tubes into my lungs, I was finally able to get the mucus out. I was kept in overnight in a ward where it was impossible to sleep because of the constant noise. The next day was the day of the record breaking temperature. Although I had been moved to a side room it was over 40 degrees and after talking to the doctor, it was agreed I could go home. 

I am actually writing this almost 2 months later as this is the first time I have felt well enough to write about it, but this could take hours to write in full, so here are the bullet points. 

Had terrible night at home the next night 

Called doctor next day and after hours of arranging things, arranged admission to private hospital in Cheam. 

Xrays and blood tests confirmed pneumonia on both lungs 

Next 10 days spent in hospital, initially in intensive care 

On two occasions required lungs suctioned, a deeply unpleasant experience requiring a 10cm long, 1cm diameter tube to pushed up my nose completely and inserting another tube through it in the lungs. 

Our family cruise was just 3 weeks away and was I very doubtful about being ok or even still around to go. 

Kadvi, who was with me at the hospital, had holiday booked 3 days after I was due home but typically the agency had waited until the last minute to find a relief. 

Spent the last 5 days in hospital training a new carer while still feeling terrible. 

Was discharged mid July, but although I had recovered from the pneumonia, I still felt absolutely terrible. 

Next few nights at home slept badly, waking regularly, vivid dreams. All symptomatic of an insufficient respiratory system. 

With just 2 weeks until cruise I knew I needed to have ventilation overnight. I knew this would mean several nights at Kings College Hospital. 

This is a nightmare in itself but was compounded by having a new carer with just a week's experience. 

Overnight oxymetry confirm my oxygen saturation is dropping to as low as 80 every time I go into deeper sleep. 

Predictably horrible journey to hospital, so many things to take. I even need to take my standing hoist as hospitals don't have them. 

Spend two nights on ward with 4 others, 2 of who had advanced MND and regularly could be heard drowning on their saliva. Then the guy opposite's oximeter alarmed loudly every 10 minutes when his ventilator mask kept slipping out of position. The alarm didn't wake me up because I had already been disturbed by the whoopee cushion noise from the ill fitting mask. 

My stay did nothing to change my view that many of our "wonderful" nurses are far from wonderful. In fact I would describe many as incompetent, impatient and uncaring. I told one nurse that my scapula was out of place. To my amazement he had no idea what a scapula was. I was about to educate him with the help of google images but before I had a chance, he kicked the computer stand so I could no longer use the eyegaze. I had specifically told the nurses to be very careful not to move it. 

After 2 nights with no sleep, completely defeating the point of going to hospital to assess my sleeping oxygen saturation using ventilation, I was discharged 

There's so many other things I could write about my three hospital visits but I just want to consign it to history. 

With just a week until the cruise and still feeling awful most of time, I still had doubts about going. It was really only because I new the boys would be very upset if I didn't go, that I was still considering it. To be honest I was dreading it and viewed it as 2 weeks I just needed to survive. I had had pneumonia just 2 weeks earlier, breathing difficulties a week earlier and felt like death warmed up, so the thought of the ship departing from Southampton dock , sailing a few thousand miles away and needing to be Medivac'd off the ship by helicopter to some Spanish hospital was weighing heavily. And I know my carer, Kadvi also had concerns. 

But I went, felt considerably better by day 3 and had a lovely time. More about which next time. 

However, since the pneumonia there has been a stepped change. The obvious difference is I now need to use a ventilator overnight, and whilst it has not been as difficult to tolerate as I expected, it's still pretty depressing that I now require it. But the other less obvious change is, I just feel different now. The July experience didn't just illustrate how precariously fragile my health is, it also hit me for six both physically and mentally. Everything seems a little darker now, my enthusiasm for doing things or going out is diminished. Maybe in time it will improve. I hope so. 

Tuesday, 2 June 2015

Regaining a little independence

I am currently helping one of my MND friends, Patrick, to make an eyegaze controlled wheelchair driving system, or as Patrick has branded it, EyedrivOmatic. There are  a couple of systems already available but with several disadvantages including high cost and incompatibilty with my current software. However the biggest disadvantage is the need to still push a switch to engage drive. There's a good reason for this but it makes it impossible for me or others with no purposeful movement left, to use. So Patrick was determined to develop a purely eyegaze controlled system. I was sceptical about the idea knowing some of the limitations of eyegaze. It was for that reason Patrick invited me to assist developing the system. He concluded if I could be convinced then anyone could.   

The system comprises a mechanical hand which is moved by tiny servos. This was manufactured by Patrick using his 3D printer. Then there's a processing unit, again constructed and programmed by Patrick. The system connects to the eyegaze computer by USB. Finally a screen grid was made to allow eye selection. 

The system is still in its early stages of development but early tests are promising.

This video was of the first day of testing and shows the mechanical hand in action.

The next video was made in the seafront carpark at my flat

The two disadvantages I expected with eyegaze control were a delay in sending commands and the problem of sunlight. I select items by looking at the screen cell for a set "dwell" time. My dwell time is set to 0.7 seconds. This means there's a 0.7 second delay between wanting to start or stop and the wheelchair starting and stopping. During initial testing this delay was compounded by a 1 second processing delay. Almost 2 seconds is a long delay when you're heading towards a river or even the edge of a kerb. Anyway Patrick has eradicated the processing delay and as a result I am feeling positive about the next testing session later this week.

Ultimately eyegaze control will never be as responsive or accurate as hand control (as Patrick discovered last week at Centreparcs when his wheelchair made friends with a ditch) but I think in a safe environment it will be fine.... as long as the sun doesn't come out. But joking aside, just to able to turn or move the wheelchair indoors will be a HUGE improvement over our current static situation. Ultimately we want to make this system available to anybody for just a couple of hundred quid.

Monday, 6 April 2015

We Are Not Alone

Filming My Father In Life And Death click to watch on demand until March 2016 

If you want to know how MND has affected me and my family, watch this Channel 5 documentary. Although it's about another family , the similarities go way beyond us both being called Steve. Their journey with the disease has been almost identical to ours, warts and all. In fact THIS is the film I wanted to make, but I didn't have suitable footage from the earlier stages. However I am still happy with my Enduring Motor Neurone Disease video and its 14,000 views on youtube know from other MND sufferers, the Isaac's and our experience isn't universal but I suspect it's representative of many families dealing with this disease.
The documentary was very helpful for Tracy as I know she struggles with the same things as the Isaacs; carers in the house, feeling guilty about not doing my care, and most of all the fear of living this way for many more years. I don't begrudge her feeling like this because I have no idea how I would feel if our roles were reversed. 

I haven't yet had to make decisions about ventilation options unlike Steve Isaac. My brief experience of using the BIPAP ventilator wasn't good and a full tracheotomy requires significantly increased care afterwards, so at the moment I am of the opinion to let nature take its course. But then again, like Steve, I don't believe there's anything after death so maybe, like him I will choose to stay alive at almost any cost to myself. But what cost do I expect everyone else to pay. I think if I chose to have ventilation, our living arrangements would have to change. However, what's actually more difficult is the scenario where I stay stable indefinitely. 

I think I would be correct in saying, neither me or Tracy want the next 5 years to be like this. Again, this was discussed in the documentary; the fact that they have begun to lead largely separated lives, discussing living apart and Steve encouraging his wife to meet someone else. All of which matches our experience. In fact the recently acquired apartment was to address one of these issues and gives us options in the future. MND rarely drawers people closer and in both our cases it has forced apart to the extent that there's very little relationship left, just mutual respect and common memories of better times. We spend an hour or two in the evenings watching TV together and and occasionally go to the odd gig but that's about it. Yes, we're both very sad about this but it's a mutual decision. And as for Tracy meeting other people, whilst I suggested it in all sincerity, I appreciate the logistical difficulties and the potential issue of friends' and family's views, not to mention those of the boys. But we are living in VERY unusual circumstances, so people may need to accept very unusual decisions! 

The biggest difference between our situations are the ages of our children, which has definitely influenced our decisions to now, and will continue to drive them for a little while longer. But on a positive note, we are in agreement as to what is likely to happen and that has been made easier to accept with less guilt as a result of this film. So to the Isaacs, thank you. 

Sunday, 29 March 2015

Quick update

Just noticed it has been 3 months since my last post and I haven't posted anything this year yet. The reason is a combination of still being busy with the apartment and not having much worthy of reporting. The apartment is going well and I have visited several times this year, staying between 3 and 5 days each time. Most visits have been combined with arranged meetings with potential holiday letting agents. Finding a suitable agent has proved difficult as 90% of them only deal with the marketing and bookings aspects, but they don't manage the guest handovers, laundry and cleaning. This requires a locally based company who can be hands on. But these tend to be in smaller and hence don't appear on search engines. So I decided on a combination of both approaches. I found a small, local company who will manage everything from bookings onwards and I signed up on my last visit. But although they have an existing client base, I doubt that considering it's already the end of March, we will get many bookings without some extra help. So I found a specialist disabled holiday agency which featured prominently on google and negotiated  a reduced rate. Obviously it's not ideal having two companies taking cuts, but the combined commission is only a percent or two above many other agency's commission for doing a lot less. I also put a booking system on the website and created a pay per click campaign on google using Adwords. So I will see which route generates the most (or any) business. I was back there last week to meet the electrician to get the property electrically certified for renting.