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. 

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.

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 https://www.youtube.com/watch?v=cTJ1BkMkvsU. I 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. 

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.  http://www.brackleshambreaks.com/

Bracklesham Bay Retreat

In last months interview blog I mentioned buying a flat, so let me explain. A few months ago I started thinking about the idea of buying an apartment on the coast where I could stay for a week each month, giving me a regular change of scene and Tracy a break from the intrusion of carers. I had initially thought about regular stays in disabled facility holiday accommodation but it is so expensive, so instead I thought I could rent whatever I purchased during the summer months as disabled holiday letting.

I lined up 4 properties to view on the south coast during one day at the end of September. First property didn't have suitable parking, second was simply horribly depressing, third had already been sold and fourth, the lift was too small. So with unexpected time to spare I made another appointment to view a flat I had almost dismissed due to it's location being slightly further than I wanted to travel every month. Maybe it was unrealistic to find a suitable property so quickly but I really couldn't face too many of these multiple viewing days. The last property was in Bracklesham Bay and it looked promising as soon as we arrived. It was 50 metres from the beach, had parking and a garage and no tricky communal entrance to negotiate. Once inside, the hallway was nice and wide, the bedroom was big enough to manoeuvre a hoist and you could just about see the sea from the lounge.

It just felt right, so within 24 hours I put in an offer which after a bit of to-ing and fro-ing was accepted. The last 8 weeks have been flat out dealing with solicitors and estate agents, organising visits for wetroom quotes, arranging for hard flooring to be fitted, sorting out the finances and finding all the necessary equipment including profiling beds, hoists, toilet and ramps. We completed last Friday and I am "moving in" tomorrow with the help of a a few people. I will be coming and going over the next few weeks and will probably stay for my first full week in January. The next job will be getting it ready for holiday letting which will require a letting and property management company. I have to say I am quite chuffed to have almost single handedly achieved this with just eye movements.

A Recent Interview

"Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

Posted November 14th, 2014 

Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called “Motor Neuron Disease Made Easier.” Steve spoke with us about the decisions that come with a MND diagnosis, the inspiration for his film and “how adaptable one can be in the face of adversity.” Read more about Steve’s story below and head to his blog to watch his films

Looking back over the last 7 years since your diagnosis with ALS/MND, is there anything you’d like to have known sooner that has helped you along your journey?

I think I was fairly pragmatic about researching the condition from the outset, so there haven’t been many surprises apart from the fact that I am still here 7 years later (and I just realized it’s actually 7 years to the hour as I write). One of the difficulties with the disease is the uncertainty of the rate or nature of its progression. There is so much equipment, mostly hideously expensive, that you will need if you want to mitigate the effects of the disease – wheelchairs, hoists, adapted vehicles, communication aids, modifications to your home, the list goes on. But if you don’t know how long, for instance, you will be able to use a standing hoist, you can’t assess whether it’s worth spending the £2000 (about $3,000USD) on one. I know there’s a degree of uncertainty with the prognosis of many illnesses but I can’t think of another which comes close to the complexity of MND.

You’ve documented your experiences in your film “My Motor Neuron Disease Made Easier” – can you share a little about your inspiration for the project?

The thought of having MND without the internet is terrifying. The amount of information available regarding equipment and solutions to our multitude of challenges is staggering. However there aren’t many websites, which bring everything together. And many have information without presenting it in a real world context. So I thought that a video demonstrating most of the equipment I use would be a simple and quick way for fellow sufferers to see what’s available, but more importantly seeing it being used. Furthermore, I have realized that for many issues there simply isn’t an off the shelf solution. And in my experience many of the healthcare professionals just aren’t very creative, so I wanted to share my ideas like the chin support, heel pressure reliever and hoisting techniques to others. Having made the video, the filmmaker, Bernard, wanted to expand the idea to how MND impacts on a family. Then finally I wanted a sixty seconds version, which could be potentially used as a hard-hitting awareness campaign. The 3000-word narrative took several days to type using eye movements, but I am proud of the results.

How has technology helped you cope with the impact of ALS/MND? Is there anything you can recommend for PALS who might not be as comfortable with technology?

Technology has undoubtedly made coping with the disease far easier. Having had over 20 years experience in IT, I appreciate that I am better equipped than most to adapt to new technology. But you really don’t need any technical ability to use an eyegaze system for communication purposes, which is the most important benefit it offers. Actually, initially I only used it for this purpose. It was only after I got more confident with eye control that I ventured out of the easy environment of The Grid 2 software and started using Windows directly. I am now able to do anything anyone else could do with a computer. It also allows me to participate with family life as I am able to control all the computers and network devices in the house, which means I can sort all the problems out. I am even in the process of buying a flat using my eyes.

I arranged all the viewings, negotiated the price, organized quotes for adaptations, dealt with solicitors, scanned necessary documents, bought hoists and other equipment on Ebay, arranged dropped kerbs for wheelchair access with the council and will hopefully move before Christmas.  So almost anything is still possible.

Your blog is testament to your incredibly busy family life! Being a father of three boys, what impact has ALS/MND had on your approach to parenting and family life?

I have to say that the impact of MND on my abilities as a father has been the hardest thing about this disease. My triplet sons were 6 years old when I was diagnosed and I was confined to a wheelchair by the time they were 8, and when they were 9 I could no longer talk to them. They are now nearly 14 and I am grateful that I am still here but we have missed out on so much, both physically and through communication.

The most obvious impact are the physical restrictions. Almost every activity that a parent enjoys with their kids has been denied to me, from kicking a ball around in a park to giving them a hug. But maybe a more important loss is that of communication.

Eyegaze is undeniably an incredible means of communication but it’s certainly not conducive to flowing conversations. Ten-year-old boys aren’t very interested in waiting around while you laboriously construct a sentence, especially if they think it’s finally going to read “no xbox for a week”! Trying to teach something using eyegaze or trying to discipline using eyegaze is at best frustrating and ineffective respectively. That’s not to say I don’t try but these are two of the most important roles of a parent, which for me have been severely compromised. However I am still able to contribute in other ways. Being able to control all the computers in the house means I can help out with IT related stuff. I have setup Minecraft servers for them and helped install mods, I have installed and monitored parental control software and setup backup facilities and  I have fixed virus problems.

When I could still drive my wheelchair independently and didn’t require a full time carer, we were still able to go out to places as a family regularly. But as the logistics of getting out got more complex, the family activities decreased, although this is equally contributable to the troglodyte tendencies of teenage boys.

What has been the most unexpected thing you have learned during your journey with ALS/MND? 

I guess it would be how adaptable one can be in the face of adversity. In one of my videos I mention remembering when I learnt about Stephen Hawking and thinking how can anyone live like that. It seemed so horrific. But I am living like that, and whilst I disagree with some PALS who say there are positive aspects to our situation, you do adapt to it if you develop these three key attributes – perseverance, patience and most importantly, ACCEPTANCE. I won’t say these are responsible for my longevity (that’s just down to good fortune), but they have made the last seven years bearable.

Summer Update

Ok, time for an update as I can't do much else this week (more on that next month). Again I have neglected the blog so a quick update on some of the summer's activities. At the beginning of the school holidays we took the boys to the Harry Potter studios near Watford. Despite the distance, it's a very easy journey, being 95% motorway. It's a good day out with most of the sets and props on display. The boys' interest wained quickly which was disappointing but not altogether surprising. Tracy and I enjoyed it, although it's a scenario where relying on someone else driving the wheelchair is very frustrating. I can't turn my head very much, so my field of vision is very narrow, requiring the driver to constantly turn the wheelchair to directly face exhibits. Kadvi does a brilliant job of driving and seems to almost read my mind, but it's no substitute for being in control yourself. 

During July I had a very busy weekend including a 10cc concert, Farnborough airshow and Monty Python at the O2. 10cc was the unexpected highlight. Graham Gouldman is   the main surviving member and the concert was split into two halves. The first was an acoustic set of the songs he wrote for other artists, including many well known songs. The second half was a 10cc gig. A thoroughly enjoyable outside concert on a warm summer's evening. Farnborough was disappointing, not only because of the disabled parking fiasco but the airshow has become very stale.Only 3 fighter jets this year, too much dull stuff. Granted the Vulcan is stunning and the boys names are on the bomb bay doors, but who wants to see bruce dickinson fly around in a private jet or an avro anson. Where was the Draken, Viggen, B52. I think now the Russians don't come anymore it's a shame. Monty Python was good. Some of it failed to hit the mark but you can't fail to smile when they perform "Every sperm is Sacred" or "Sit on my face and tell me that you love me" And obviously the Parrot Sketch and the Lumberjack Song are among the hits. 
In August Tracy took the boys to Pembrokeshire with her family. It's the first holiday I haven't participated in but it's so complex to accommodate everything I need and we have a cruise booked next summer, so I really didn't mind. They had a great time with many activities that the boys loved. I went to the coast for a day trip with my mum and sister. It was perfect weather and we went to Worthing and Littlehampton. A lovely day out which I thoroughly enjoyed. However I discovered that 100 miles on twisting A-roads is the limit for one day! 

The last event of the summer was Wheels and Wings at Dunsfold Aerodrome. Tracy had advised them of my situation and they offered complementary VIP parking and access to the  covered veterans enclosure if it was raining. Totally opposite experience to Farnborough. The highlight of the show was the two remaining airworthy Lancaster bombers flying together. Although when the Vulcan is flying it always steals the show. 

 

Last week I went to hospital to get my peg feeding tube  changed. When the original tube was fitted 5 years ago, like my eyegaze computer, I didn't expect to survive long enough to need a replacement But with the tube starting to split I knew I had to bite the bullet. I knew the procedure would be very unpleasant because with my breathing so weak, any sedation could be dangerous. The appointment was at 8am which meant getting up at 6am. The idea of the early appointment was to do the procedure mid morning , so if I needed sedation they could monitor me during the afternoon, thus avoiding the dreaded overnight stay. But of course this is the NHS so the procedure didn't start until midday. The procedure was even more unpleasant than I expected and quite scary at a couple of points. In summary it was 15 minutes of choking and very difficult breathing while a 1cm endoscope was pushed down my throat and into the stomach twice,  to remove the old tube then fit another. So having had no sedation I expected to be on my way immediately. Of course this didn't happen, I was kept waiting until 5pm because the ward staff said I had to wait for test results. I only complied because I had overheard the surgeon say after the procedure that "he was a little tachy" which I know means tachycardia, so I thought they could be waiting for a second opinion. But of course they weren't, it was just the standard quote which actually means "we have no fucking clue what's happening". So 10 hours in hospital for a 15 minute procedure. It's like EVERY other hospital experience. Excellent clinical staff,  totally disorganised , chaotic and generally clueless ward staff. Anyway it's done