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

Enduring Motor Neurone Disease

Daniel's and Tracy's ice bucket challenge

My Films

Well there's actually a lot to catch up with, but for now I want to tell you about the films I have been making. It started when I decided to make a film about living with MND to help others deal with all the equipment, and give them advice based on my 7 years experience. The film was made by Bernard Bushnell, a family friend of my fellow MND suffering friend, Liam. The 30 minute film took a day to shoot, but Bernard decided that a 2nd version with more of a focus on the impact of the disease on family life, would be a good showreel to further his film-making career. So I benefited from many more hours of his filming and editing time. And as a result we have a 20 minute documentary and Bernard has been successful in getting a shorter version on the BBC Fresh website. This could lead to a 60 minute full documentary on BBC3 next year.
Finally I was determined to make a 60 second version, with the view to getting it on TV as an ad campaign to raise awareness and funds. BUT the minimum cost of airtime for a realistic ad campaign is £25k. So if anyone knows of any organisations who could contribute a few grand, let me know.

This ALS Ice Bucket Challenge phenomenon has been unbelievable. When I watched celebrities participating in this challenge, I broke down into a sobbing mess. Because for the first time since receiving my death sentence diagnosis, I didn't feel forgotten and ignored by the world outside of my friends and family. This has been the single most important awareness and fundraising event for ALS and by god we need it.

The documentary on BBC Fresh goes live next Wednesday 27th August, the 20 minute documentary will be put online shortly after and my initial information film will be on the MNDA website soon. But here is the 60 second potential ad.

Jake Nailing Muse Again

Hospice Stay

This week I have been on a respite break at the hospice. But unlike previous breaks, I have my live-in carer, Kadvi staying too. I first visited the hospice in 2008 shortly after my diagnosis of a terminal illness. Despite all the positive press about hospices being wonderful places, this counts for very little when it's YOU that has qualified to use one. Ultimately hospices deal with end of life.

If you read my previous blogs during hospice stays, you'll know that I feel out of place here, it's not for me. And this time I feel positively fraudulent!!  This is because the longer I keep beating the survival odds, the more convinced that I will be around for a good few more years yet. I guess I feel I have now disqualified for hospice eligibility.

If this is true, I guess it's good although it will make any subsequent re-qualification difficult to accept. I just find the whole environment rather patronising. The way everyone talks to you, medication confiscated so you have to request it, having to have hospice staff oversee every hoisting routine. I find it difficult because despite MND I have refused to relinquish control of anything. I know kadvi finds it difficult too. Don't get me wrong, the staff are all lovely and the hospice and gardens are wonderful. It's just not for me..... Yet.
However we have actually spent little time at the hospice. On Wednesday we went to Hampton Court Flower Show, yesterday we went to Painshill Park and the local pub in the evening,  and as I write,  I am sitting at Newlands Corner viewing the Surrey countryside.

It's been 3 years since I visited the flower show but having the live-in carer, events like these are possible again. It's a bit of a struggle getting the wheelchair through the crowds and much of show requires going off the path onto bumpy grass, but it was a nice day.

Painshill park's paths have improved since my last visit, 2 years ago, so getting around was easier than expected. I might even buy membership next time

The decision to meet Adam in the pub was a spur of the moment thing. I don't think I have been to a pub for over 3 years, probably mainly because of previous bed time limitations as much as the unappealing prospect of watching everybody else eating and drinking. But actually it was very enjoyable. My sister and Kadvi joined us until 9.30 then Kadvi returned with my car at 10.30. I think I will do it more often.

So ironically, despite my earlier comments and with Kadvi's considerable help, this has been the easiest hospice stay. But I think I will look seriously at coastal, disabled accessible and equipped holiday accommodation. Obviously it won't be free like the hospice but it would give me a base to go out from to new places. If I find a good place, I might even do it more regularly . Next weekend we are going to see 10CC (showing my age), going to Farnborough Air Show, and seeing Monty Python at the o2 arena. Phew.

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The Shard

Today I went to the Shard. It was meant to be a straight forward journey; drive to Hampton Court station, train to Waterloo, Jubilee line to London bridge. An hour tops. Unfortunately it didn't go exactly to plan. At Waterloo we were told the lifts to the Jubilee line were unavailable because of planned maintenance...... until the end of July. I made the guy wait while I typed out and read at full volume "that is fucking ridiculous". Because it is. Wheelchair access on the tube network is absolutely disgraceful anyway. Having one of the few accessible tube lines inaccessible from one of the world's busiest stations, for 2 months is inexcusable.

We were told we could access the jubilee line from Southwark station, which was a 10 minute walk away. Luckily it was a nice day so we headed off. We reached the station and got the lift to the platform. The train arrived, doors opened and we saw a 5cm height difference between train and platform which is impossible in this wheelchair, especially when there's also another 5cm horizontal gap between train and platform. I am sure the last time I travelled from Waterloo, the access was better but then I had my offroad wheelchair which easily coped with these types of challenge.

I think when wheelchair access is considered during construction projects, it's based on manual wheelchairs which have big wheels and can be tipped back easily. Power chairs actually need LEVEL access. Wheelchair users aren't all Ade Adepitan!

So we walked for another 20 minutes to the Shard.

Twenty quid and four lifts later we were 800 feet above London. Needless to say, the view is amazing. Seeing helicopters flying beneath you and Big Ben almost indistinguishable from it's surrounding buildings puts your height into perspective.

We stayed for around 30 minutes before getting the bus back to the OXO tower, spending some time on the Southbank and returning home. Kadvi wasn't phased by any of the challenges and maintained good humoured throughout so overall it was a good day out and have learned that buses are now the only way of travelling within London.

Just like old times.... Almost

The last time I went to the Southbank in London was when I could still take myself up there in my offroad wheelchair about 3 years ago. Since having a live-in carer, trips out have been possible but I haven't ventured to London.... until yesterday. I guess it's a number of factors that dissuaded me. Since October it's been either too wet or cold, and before that I had worries about wheelchair battery life. However with recently fitted replacement batteries and the new eyegaze system no longer needing to use wheelchair power for 6 hours, wheelchair range is much better.
So yesterday I decided to return. We drove to Hampton Court station where there are very conveniently placed disabled parking spaces, hopped on a train with the help of the train's guard and was at Waterloo 35 minutes later.

The wheelchair was reasonably comfortable getting to the southbank because the pavements are pretty good and Kadvi is a great wheelchair driver, knowing when to support my head. I still miss the comfort and speed of the offroad wheelchair but I don't miss the constant terror of the dreaded puncture. So with one eye permanently on the wheelchair battery level lights we headed for Tate Modern.

charge indicators on wheelchairs are pretty hopeless. When the first of six lights goes off you haven't used 1/6 of the charge but around 60% which means you better be already on your way home when it goes off. We made it to the Tate fine.

We only spent about an hour looking around, not wanting to push our luck. It was nice having made it there again albeit not under my own steam anymore. As always I can't help feeling many of the exhibits fall into "The Emporer's New Clothes" category;  people marvelling at a blank red canvas, 3 rocks placed on the floor, or a video of a blue screen with someone reciting some jibberish.

Anyway, with all battery level lights still on, we headed back to Waterloo. The whole process was pretty easy, the wheelchair range wasn't a problem and the weather was perfect. All that pollution kept the sun off the eyegaze ;)

So I am planning The Shard next

Eyegaze Mk2

After 7 months of battling I have finally received my new eyegaze system. The NHS have now allocated specific funds for providing specialist communication devices but the processes for accessing the funding haven't been in place until this week. So the MNDA agreed to rent the system until the NHS purchase the system outright for me.

The system arrived 2 weeks ago and it's working great. It's not hugely different from my previous system but it's not got the faults ;the batteries last 6 hours instead of 2 minutes, the sound is much higher quality, screen is much brighter and touch screen works. It has a solid state hard drive which apart from being much more robust than a traditional hard drive is also lightning fast, resulting in reboots taking 30 seconds instead of 3 minutes. This might seem unimportant but two and a half minutes is a long time when you want to say something. It also has a webcam so I can video skype.

The only issue is with the eyegaze camera. It didn't work outside which is obviously a big problem. I have been talking to the camera manufacturers in Germany who have been incredibly helpful as this is a new problem. So with my assistance they released a new software version within 24 hours which has improved things considerably and further improvements will be developed soon.

Many thanks to Liam and Caroline for their help getting this sorted
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A message from my brother-in-law

Hi everyone, on April 13th I will be running the London marathon.Hopefully with your support I aim to raise as much money as possible for the MND association. If you would like to sponsor me you can go to my Just Giving website or click on the link  https://www.justgiving.com/DaveBarrett1966/ .Or you can text me if you wish. Your support, even if it is just to wish me luck would be very much appreciated.  Thank you. 

Matt Bellamy, watch out. Jake plays Hysteria by Muse

It Didn't Take Long ....

Didn't take long to find something to whinge about in 2014 although it's bugged me for ages; disabled parking

The blue badge scheme is a great idea but it is subject to so much abuse and misuse, its value is undermined. There are 2 obvious problems and 1 more controversial one. First there are the people without badges who are simply too f***ing lazy and selfish, so simply ignore the restrictions. When I could still speak I used to enjoy challenging these people just to hear there excuses and watch them squirm! The most frequent response was "oh sorry, I didn't realise it was disabled" or "I was only going to be 5 minutes". Even if in the unlikely event of this being true, it's of little consolation when I arrive during those 5 minutes and can't park. The next offending group are those with legitimate blue badges but seem to have forgotten the disabled person! These people are harder to challenge because the number of excuses is greater and occasionally more plausible, such as they're picking up the disabled person, to which you can't really argue, although 95% of the time it's total b******s

I HAVE actually challenged someone using eyegaze computer voice, but eyegaze typing doesn't lend itself to arguments and they are long gone before I have finished typing "you are a selfish c***"!

The final problem is more controversial. I have lost count of the times I have been sitting in Bushy Park car park and seen cars with blue badges park next to me, and someone emerges with the tiniest of limps and proceeds to walk a mile around the lake. I don't want to get involved in a cripple competition but it does annoy me. It's not such a problem in car parks with multiple disabled parking spaces but when the single space outside a London theater has been taken by a "limper", it is infuriating

I don't know what the answer is, I have thought maybe they should introduce a two tier system which helps ensure the most premium spaces can only be used by the most needy. I guess it's too costly and complicated to achieve and like many of those limpers do already, people will simply exaggerate their disability to get the higher level. While on the subject of questionable applications for a blue badge, there is a more serious implication of exaggerated claims. Because one of the criteria for a blue badge is qualifying for the higher level of disability living allowance, it means many people will be receiving several thousand pounds each year with questionable legitimacy.
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MND

Here are some links to accompany my video

The Fiat Doblo In Front instructions are here which explain the wheelchair loading procedure

Fiat Doblo In Front instructions

The narrative for the video is here

Video Narrative

The company who write The Grid 2 software and supply a wide range of communication devices including eyegaze systems are Smartbox. I can't recommend them highly enough. Absolutely superb.

http://www.smartboxat.co

The wheelchair computer mount and power supply which powers USB devices were supplied and fitted by Smile Rehab. They also supply a wide range of products including wheelchair controls. They are very helpful.

http://www.smilerehab.com/

The company who do the Fiat Doblo conversion are Wilson Healey
but they now sell the vehicles through Accessible Vehicles
http://www.accessiblevehicles.co.uk/

My Wheelchair
Invacare tdx-sp


This is the standing hoist I use. It gives excellent leg support

sara 3000 standing hoist

I didn't demonstrate my toilet for obvious reasons, but here are the details

http://www.clos-o-mat.com/

The software I use to control the other computers is Dameware Mini Remote Control. It's gone up in  price considerably recently, but if you need to regularly control other computers, this is much better than Teamviewer or log-me-in, because no user intervention is required on the remote computer, it doesn't even need to be logged in.

mini-remote-control

These are the details of the bed

volker-3080-bed


Tacky Spray
stickum


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Happy New Year

Well, looks like I have made it into another year. Have to say I am glad to see the back of 2013. There were highlights including fabulous weather, a very enjoyable cruise and finding an excellent live-in carer. But the year was marred by the totally unnecessary and intrusive dealings with social services. Anyway that's all finished now so hopefully 2014 will be an improvement

We had a good christmas with both of our families visiting. This was the 1st year that the boys weren't up before daylight opening Father Christmas' presents (they probably twigged several years ago). We had a nice afternoon with my family, and played a couple of games in the evening before watching Dr Who. The school holidays have dragged . I could sight the atrocious weather as a factor, claiming the boys would have otherwise been going out on their bikes or playing football in the park. But in reality I doubt if any of them noticed the rain or wind because like most 12 year old boys, they are too busy worshiping Xbox, the god of gaming.

New Year's Eve was the usual affair of watching Top 50 whatever programmes before watching the fireworks. I managed a tiny alcoholic tipple courtesy of an oral syringe, the 1st drink in 3 years !!

So with that, I wish you a very happy new year

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