Lessons Learnt - Tips for the Newly Injured

Before I forget all of the lessons that we learnt I thought I'd share some bits and bobs that might be useful for others who are newly diagnosed. 

Football.
A very satisfying word to utter with vehemence when company prohibits other F words.  Sometimes there's nothing else for it but to tell life to Football. 

Adaptations.
Think outside of the box and don't be restricted by what's currently on the market.

Simple things like blowing your nose for example, if you don't have the lung power to clear your nose how do you remove the 'blockages'? José liked cotton buds, but carrying cotton buds usually ends up with the pack splitting open, and the buds getting covered in crumbs/ dirt/ fluff that has accumulated in the bottom of the bag. Enter the old spice jar - your standard little pot of herbs or spices (probably best to avoid the fiery hot chillies) once washed out is the perfect size for cotton buds. 

Straws: Every time we stopped for a drink we'd need a straw. A pub would often have one but restaurants, take aways or friends would struggle. Rather than routing around for a squashed one in the bottom of the bag we had a toothbrush holder - the long plastic kind sold to travellers. Perfect for straws. 

Dog Training / Playing: Bradley is very food orientated and would only listen to José (well anyone really) when food was involved. We wanted a way they could play together, Master and Dog. Aunty Nanu came up with the brilliant idea of the pea shooter. One Internet purchase later and we were in the local pet shop asking if they had any biscuits the right size (I insisted on José accompanying me on this shopping trip or I would have just sounded weired!). 

Motability. 
José was encouraged to get a car on the Motability Scheme. But the choices were limited. José wanted to sit in the front, not the back and wanted room for me, a carer and the dog. The new cars on Motability wouldn't give us this, so we shopped around until we found a second hand one - giving us the benefit of an asset too. The Motability Scheme uses your PIP benefit, but you can take this money and use it to pay off any monthly repayments. 

Thinking Ahead. 
When it came to discharge we were told José would have 10 days medication sent home with him, and that he'd get free prescriptions. What we weren't told was how to get the free prescriptions. It isn't automatic, and is a form that needs to be completed by a doctor. It took a few weeks for this to come through and could've been done in the hospital. If it hadn't been for an understanding chemist we could've spent £100 in prescription charges just in the first week. 

The hospital helped with benefits but it's definitely worth applying for everything you can as soon as possible because it all takes time. As well as the free prescriptions we had a reduction in council tax, blue badge parking, reduced taxi fares, local borough disabled discount card and free travel on public transport (for José but not his carer). 

Setting Priorities
One of the first things we did when we finally had time together was to map out José's priorities as a man not a patient. You'll find that every doctor, therapist and well meaning visitor will have their opinion and after months of being a patient you've forgotten how to set your own priorities. We divided life in to Home, Social, Physical and Work - chosen by José in that order. We then wrote down keywords for each section and made a rudimentary poster that we reviewed regularly. It helped us both retain focus and track progress. 

Be Strong
Don't be afraid to say when something doesn't work. The devil you know is never better. This is particularly true when it comes to the care package. We by no means had found the solution and were still looking for the right carers and an appropriate number of hours of care. But what we had found was the right carer made an immeasurable difference to both of us. If José lacked confidence in his carer my work day would be punctuated with emails and calls asking questions about where something was or when it was happening. With the right carer I'd return to them cooking dinner having been out for the day. The best thing we did was to learn to ignore the agency requests to give another chance, it never worked, and to listen to our guts saying this isn't the right carer for us. 

Buy Loo Roll. 
In Bulk. Seriously, I don't know what happens to it but José had rolls in his room (each fresh carer seemed to need to start a new roll) and we still got through over a roll a day in the bathroom.  We always ran out of loo roll. 

And finally; live, love and laugh. Be honest and true to the person you always were and always will be. Life is hard but it's not impossible.

My Eulogy - 23rd May 2016

“When I say I love you, I don’t say it out of habit or to make conversation;
“When I say I love you it is to remind you that you are the best thing that ever happened to me.”

This anonymous quote was displayed in the registry office when I registered José’s death. And if ever there could’ve been a message from José then this was it.
When José was in intensive care on a ventilator and unable to speak we ‘invented’ a limited language of winks, nods and shakes. The most important was “I Love You”. And we kept using this when he came home. We could use it when we were in the company of carers or visitors, we could use it when we were getting good or bad news from specialists, and we could use it in place of a cuddle on the sofa. And believe me José could put more emotion in to that wink of an eye than those three words alone contain.

When I first met José he was a bit of an enigma to me. He was popular yet shy. He worked in a male dominated industry, liked my motorbike, and was very determined on the climbing wall but he also enjoyed wine, opera and reading the new scientist magazine. I was training for a 10k and he offered to coach me. He told me he was running a half marathon that weekend, I asked for what charity he was doing it, and he told me it was just for fun. I’d never met anyone who ran half marathons for fun before.

Thank you to everyone who has shared memories with me over the last month. There are some definite themes coming through:

He had a wicked sense of humour; tell that to the student nurse in intensive care, who, just a week or so after José’s accident, tripped over a cable, when she picked up the loose end and asked if it was important – she saw José limp on his pillow pretending to be dead.

He was a true gentleman; he certainly was a stickler for good manners and tradition. When he proposed to me it was in Florence, a city where we both have family connections (and where coincidently the world cycling road race championships were being held at the time of our visit). He proposed at the top of the Duomo, we had just climbed up countless steps and frankly I just wanted a sit down, he was taking pictures all the way round. He wanted one more picture, back round the other side, I needed to stand just so and then I noticed he was down on one knee and asking, with my Dad’s permission, “Katie, will you do me the honour of becoming my wife?”

He had a legendary appetite; anyone who has been away with José will recognise his need to consume mountains of muesli several times a day, and also his sudden alertness to the mention of the word ‘sandwiches’. He loved to cook, a joy he had recently rediscovered with support from his carer. I remember the first meal he cooked me, he got a bit flustered, when I arrived at his apartment I found him with a soggy mess in one hand, and a peeler in the other having confused the words potato and tomato.

I didn’t know José for nearly as long as many of you here today, and I certainly don’t need to tell any of you how amazing he was. We had less than three years together before his accident but we made some incredible memories in that time. We had cycling holidays in Devon, Somerset and Tuscany; we climbed in Portland, Wales and Cheddar; we saw seals in Norfolk, the northern lights in Iceland, and orang-utans in Borneo; we stayed in a shepherds hut, a rainforest and a Moroccan riad; we took mopeds around Rhodes, traversed the world’s highest via ferrata in Malaysia, and experienced the spring cycling classic, Ghent to Welvegem in VIP style.

He ensured a very memorable wedding night. A night when at around 4am I had to call down to the hotel bar and ask them to send up my new husband. Then 20 minutes later I had to call down to the hotel bar and ask them to send up another man, because my husband had slipped in the shower and was now lying in the bath with his legs flaying like an upturned beetle whilst an unstoppable torrent of water shot out across his head from the broken shower pipe.

José’s accident just a year after our first anniversary was an incredible shock. Our action man – broken. His list of injuries read something like this:
Skull – cracked
Vertebral arteries – dissected
C1 Vertebrae – smashed
C2, C3, C4, C5, C6, C7 vertebrae – fractured
T1 vertebrae – fractured
Left shoulder – fractured
Associated soft tissue– damaged
Spinal Cord fluid – disrupted
Spinal Cord C2 to C6 - crushed

The doctors prepared us for the worst, they hadn’t seen this level of injury before on anything other than an autopsy. But José was strong and very fit, he was conscious and breathing when they admitted in. And as each hour and day passed his chances of survival became greater. I don’t know how José got through those early days – but I know that if he could have done a deal with a higher power or a guardian angel he would have asked for time to say good bye. And it truly was a miracle that we got that time.

This last year has been hard. Life has been as far from normal as it has been possible to get but José was nothing but determined to live as normally as possible. He wanted to breathe and to eat. He accepted he wouldn’t walk, use his arms or regain feeling. But he still wanted to get out and do the things he used to enjoy. He went to the theatre, galleries and took the dog for a walk. He met friends in pubs, cafes and restaurants. We had had a week away in Derbyshire and days out all over the south east. That cheeky humour was clearly evident whenever I asked something like “there’s a choice of cafe’s, one at the top of the hill and one by the car park. Which would you like?...” . I have never been so fit.

He started looking at swimming, powerchair football and neuro physio. He could use a computer with his eyes and was making the most of it. At the time of his death he was researching hotels with hoists and adapted beds we could share. We were excited (and very nervous) about moving to a bungalow and starting a family.

Our plans for the future weren’t to be fulfilled. But José has taught me so much over this last year that we definitely have a future together. He faced every challenge with dignity and with determination. He was never angry about his accident nor embarrassed about his condition, about being spoon fed or drinking through a straw. He was grateful not to be in pain and to have had the chance to live independently for many years. He remained patient and polite, despite constant frustrations. Rather than complain José was more likely to apologise for the effect his paralysis had had on others, it is testament to his natural concern for others that he felt he was letting people down by not living up to their hopes that he would recover. José was incredible. José-Antonio Barretta IS an inspiration.

I truly believe that meeting and loving José is the best thing that ever happened to me.

I have a charm bracelet on which is a charm for all the important people in my life. José chose to be represented by musical notes because he would play a game with me where he’d ask “who’s this?” to every song on the radio. The Carpenters was one of the few I always got right.

Carpenters - Yesterday Once More

Month 13 - A chance to say goodbye

José's (Zulu) funeral will be Monday 23rd May 2016.

We will leave the house at about 13:45 and travel José's training route over Shooters Hill to Eltham Crematorium (Falconwood).  The service will be at 14:45 until 16:15.  Everyone is welcome to return to Oxleas Café for a Life Celebration where there will be an opportunity for anyone who wants to to say some words or share memories.

Donations in lieu of flowers should be done for London's Air Ambulance, you can make an online donation by following this link. Without them we wouldn't have had the last 12months together.

If you have any photos to share then please tag José on facebook or email them to me.

If you are a strong cyclist and would like to escort José on his last climb over Shooters Hill or if you are a Runner and you'd like to pace José on the final stretch of his journey - please see details below.

Parking
There is limited parking available on Crookston Road.  More parking is available at Eltham (Falconwood) Crematorium SE9 2NL or at Oxleas Wood Café SE18 3JA

Public Transport
Eltham (Falconwood) Crematorium is a short and easy walk from Falconwood rail station.
Bus B15 stops at the Cemetery on Crown Woods Way, and Bus B16 goes to Falconwood station, both deoart from Eltham High Street.
Eltham station is the closest accessible station. The José Hopper (accessible minibus) can be pre booked to take wheelchair users to the crematorium at 14:15. And to the café later. Please contact me or Georgina before Saturday to book.

Cyclists
Cyclists should meet at our house on Crookston Road at 13:30.  At 13:45 you will follow the hearse and limousine along Crookston Road, up Westmount Road to the South Circular and then right on to Shooters Hill (please be aware that this is a steep ride, you may need to let cars pass you safely).  Coming down Shooters Hill the procession will turn right on to Welling Way.  Runners will join at the corner of Welling Way / Rochester Way.  The procession will continue along Rochester Way to Bexley Road and then Crown Woods Way from which it will enter the cemetery.
Please feel free to wear Dulwich Paragon colours or a cycling top that represents a challenge you've completed (I have some of José's tops that can be worn).

Runners

This route is wheelchair accessible.
Runners should meet at the corner of Rochester Way / Welling Way at 14:00.  The funeral procession will get to this point at about 14:15. Runners will then lead the way down Rochester Way where they will enter the cemetery via the pedestrian gate on Reifield Road. Note: Dropped kerb for wheelchairs is just after you cross the A2).  Runners will cross the cemetery and rejoin the procession as it enters the crematorium from Crown Woods Way.

Please feel free to wear club colours or a top that represents a challenge you've completed (I have some of José's tops that can be worn).

Travel to Oxleas Café

After the service it is possible to walk, run or cycle from the crematorium back to the starting point and then through Oxleas Wood and meadow to the café.

Those with restricted mobility who have not booked the José Hopper are advised to take bus B15 to connect with buses 89 or 486 going up Shooters Hill from Welling.  Leave bus 89 or 486 at Crown Woods Way (SL)

I shall update this post as and when I have further information.

23rd April 2016 - A Perfect Day

Saturday 23rd April 2016.

José and I were both acutely aware that although not the anniversary of his accident (25th April) today was the same Saturday a year on, it was the weekend we didn't get in 2015. I cooked ribs on Friday night because José said he missed 'active' eating - we made a mess but he enjoyed ripping the meat off the bone with his teeth.

Saturday morning I popped in for a quick cuddle and a good morning kiss before sorting out Bradley. We had a quick chat about marathon plans, last year we were supposed to cheer on the starters, grab a bacon sarnie, then José would go to meet running club friends further along the route. We decided to do the same this year - but watching at home on TV instead of at Charlton Park; I bought in some bacon.

Following his morning personal care routine José asked for a shave from Zofia, the carer trusted with the task, and to dress in his smart jeans and the woolly jumper he considered smart (and I thought resembled a fisherman's favorite).

When Bradley and I got back from our walk I sat upstairs making José's suggested blog amends, listening to the exuberant squeals from downstairs. The double-up carer for the day hadn't been for a while and was amazed by the progress José was making with his exercises. A credit to the attention from carers and the expertise of the physios, in the three months since discharge José had progressed from no movement to working on what we called the 'royal wave' with his left arm and we were beginning to see an awakening in the right bicep too.

Our plan for the day was to head out after lunch to meet a good friend in Chelsea where we'd watch a film (Jane Got A Gun) and then to meet up with family to watch a concert at the Cadogen Hall in honour of the Queen's 90th. We celebrated her actual birthday two days before by attending a beacon lighting at Oxleas Café - any excuse for a portion of chips and a glass of wine. An awkward moment when the pearly king tried to shake José's hand for good luck; we managed it third party.

Unfortunately on Friday night we realised Chelsea cinema isn't wheelchair accessible. So once up and about José jumped straight on the computer (controlled by his eyes) to look at films at Fulham Road cinema, their accessibility wasn't clear so we called and found out they have limited wheelchair access and the only film available to José was The Jungle Book. We declined.

Deciding there surely must be something wheelchair accessible around Sloane Square we decided to meet up any way.  We ate the delicious stew his mum had left us with some lime rice and green beans, then Zofia gave us a lift to Eltham station.

We knew we would be late home so for the first time we had pre-booked our return journey.  We would get to Victoria at 22:09, be put on the 22:39 to Lewisham where we would have to get off to be put in a taxi to Eltham station where we would meet Zofia and the car.  We confirmed these details with our favorite Customer Services Assistant at Eltham - no sarcasm Gemma has been really lovely.

On our journey to Victoria we chatted about a report José had just received. During his last hospital admission José had suffered a pro-longed respiratory arrest.  His lungs had blocked with an infection and his heart had stopped for the fifth time as a result.  He was in intensive care so emergency care was quickly administered but due to the fixings in his neck it was difficult for them to get the ventilator tube in place. We knew that there was a risk of brain damage as his brain had been starved of oxygen for the duration.  We were grateful that the damage seemed minimal but the report we had just received told us exactly what the problems were.
José was focused on the negative elements "reduced initiation and a degree of difficulty in mental flexibility and response inhibition" - he hadn't remembered exactly what the points were but didn't like being below average. Whilst I was pleased with the good things "Verbal based intellectual skills were intact with no deterioration...word retrieval skills were very good...memory was satisfactory...nonverbal abstract reasoning and problem solving were satisfactory." What I hadn't liked was José being described as a "casually-dressed gentleman". The pre-accident José would never have gone to Harley Street casually dressed, now he didn't have a choice.

We arrived at Victoria and made use of the Radar key for the first time. Jumping the queue to the toilets and avoiding the 'pay-to-pee' charge.  We enjoy these little perks, the day before we had queue jumped almost 70 places waiting to have a blood test at the local hospital just by having pressure relief.

Having met our friend José suggested the pub opposite called the Dickens or Wordsworth or something.  It is the Shakespeare - and it was the 400th anniversary of Shakespeare's death, even if it had been accessible there wasn't room for us.

Instead we walked down to Sloane square in the sun, we went in to the first place but it was quite busy and actually we thought it would be nice to sit in the sun.  A barman gave us directions to a pub with a beer garden but when we left we found the place next door had a free table on the front, so we settled down to sit in the sun, watch the people and to admire the expensive cars passing.

We ordered a good bottle of wine and set about putting the world to rights. Time flew and we had a much better catch-up than we would have done if we'd gone to the cinema. We chatted about a mutual friend's band and promised to get to see them as soon as they were playing in an accessible venue at an accessible time.  Time was marching forward so we opted for the pre-theatre two course menu with a second bottle of wine.  José had the charcuterie board and we all had the steak and frites.

Finishing our meal we had to escape the attentions of a drunk and his dog - he had a disabled sister so his stinky dog would be OK with José, uh great? - and an old lady who was also three sheets to the wind.  We got away and said our goodbyes having had a really lovely relaxed afternoon.

The Cadogen Hall was just on the next road but to get there we had to take a circuitous route to find dropped kerbs that weren't blocked by parked cars.  We arrived in time, met José's cousin and went in with assistance from the front of house staff.  We had to go down one lift, through the reception area (where a man stepped backwards out of our way, landed on a pull-up banner, lost his balance and ended up sitting in a pot plant), up another lift and then in to the stalls.

José and I stopped at the toilet where we had a little giggle at possibly being the fittest group in attendance as everyone else seemed to be very retired veterans. We found our seats near the door, said proper hellos to sister, brother-in-law and two cousins. José put in an order for another glass of wine and we took off his coat ready to settle down to watch the show.

And that's where our perfect day ends.

If you want to stop reading now then please do, but I know other people want to understand what happened. If that's you then it's OK to read on.

To understand what happened you need to understand three things.

First, anyone sitting in a wheelchair is advised to relieve the pressure off their sitting bones for two minutes every hour. This helps to reduce the chances of developing a pressure sore. José achieves this by being pulled forward so he's touching his ankles.

Secondly, following his accident José's diaphragm was weak and his intercostal muscles paralysed.  It took considerable effort for him to learn to breathe again and it was still impossible for him to cough, sneeze or laugh.  The risk of his lungs getting blocked was very real.  He could have kept a tracheotomy in place but he didn't want this, despite knowing that with the metal work in his neck it was hard to get him ventilated.

Thirdly, José's level of injury meant that his swallow was weak.  He had difficulty clearing his esophagus and food and liquid could easily access his lungs. The only way to clear an obstruction was by us manually helping him to cough with abdominal thrusts.  José was given the choice to stay on a PEG feed where liquid nutrition would be pumped directly in to his stomach every night, but despite the risks of choking he wanted to eat and drink and to enjoy these things in life.

So now you understand the risks you can understand what happened next.

I positioned José forward to take off his coat and to give him some pressure relief before the show started.  The pressure on his stomach whilst he was bent forward caused some of the recently eaten meal to travel from the stomach up in to his mouth.  When I helped him back up the partially digested food reversed it's journey but went down the open airway.
I rushed José out of the room and tried to clear his airway but the quantity was too great.  José lost consciousness quickly, and I know from the previous episodes that he wouldn't remember the incident. We called an ambulance and got José back to street level where we performed CPR and continued to try to clear his airway.

The paramedics took over the CPR and used suction to clear a lot of food from José's lungs.  They tried everything in their power including adrenaline and a CPR machine but had to take the decision to call it a day.  It was at this point that they felt a pulse, the lead paramedic had never experienced this before.  It was all hands on deck to get José, and his incredible fighting spirit, manually ventilated ("bagged") and in to the back of the ambulance.  He was rushed to St Thomas' A&E but his heart stopped again. He was briefly responding to adrenaline shots but in the end we had to take the decision to stop, his brain had been without oxygen for too long.

And that's where our not-quite-perfect day ends.  Sitting in A&E on a Saturday night surronded by drunk and abusive Pearly Kings of London boroughs.

For José this was the end of an almighty struggle.  A year in which he proved that disability doesn't have to stop you living life.  A year in which he inspired so many people.  A year none of us want to repeat.  When those first paramedics, who responded to a 999 call to help save a cyclist, named him Zulu they couldn't have chosen a better name.  He was a warrior to the end and now he's free to run, cycle and climb in our hearts.

Month 12 - Adaptations

**This post was written prior to 23 April 2016**

Blimey, it's been a year. A year since José broke his neck. A year since our lives changed; and yet a year in which life has carried on regardless.

In this post I'm going to focus on the adaptations we have made, but first let's catch-up on the 'normal' things we've done since the last post. Remember Tetraplegia or not, we're a (relatively) young, newly married couple, surrounded by our friends and family, with access to everything that England and her capital city has to offer.

Easter was a staycation for us. We concentrated on catching up with friends, both new and old. We had new friends to dinner and took them on one of our favorite walks - a hilly affair given both boys have tetraplegic injuries, us girls have to keep trim. We met old friends and their newest arrival in a local pub, where we enjoyed chocolate puddings and the baby enjoyed José's warm and steady lap. We went for dinner at the home of other friends (our travelling ramp coming in handy again), and admired their extensive gin collection. And to complete the bank holiday we met up with family for a walk along the old Braintree railway (for inspiration we recommend a book published by Sustrans' - Traffic-Free Cycle Rides).

We also celebrated our second wedding anniversary, for which José arranged for a houseful of daffodils - our wedding flower. We met friends who were over from Germany with their new baby - he discovered a great feeding station on José's lap - before going out for a very long lunch on the Thames Southbank. One word of advice - don't bother trying to get on the Jubilee line during rush hour! We eventually squeezed on and then needed to recover in the pub.

We've made the most of our National Trust membership (José gets a free plus one so we can take carers with us) by visiting Knole Park (deer park), Emmetts Garden (spring garden), Chartwell (virtual tour of whole house) and Hatchlands Park (bluebells) - and sampled the cafes of all. José has been to the Dulwich Picture Gallery with friends, they went twice as they got caught in an evacuation the first time and had to retreat to the safety of a tea shop.  We've been to the theatre and the cinema and out for dinner. And a great trip to London's Sky Garden - where wheelchairs get to skip the queue.  Life really does go on.

So how has life changed?

Let's start with Jose's body. It's pretty amazing. (I've always thought he's got an amazing bod but now it's scientifically proven). A symptom of paralysis is spasms. They can be a nuisance when they sit him up or thrust him sideways during transfer to bed, but they also maintain muscle tone and as they can be triggered by sensation they sometimes mean he can return my hugs (sort of).
As a runner, José has always been conscious of his weight. He's used to looking race-ready (read emaciated). It's hard for him now when he sees himself (looking healthier) but you've got to stop and think about what the body is doing. When you're sat on your bottom all day a skinny rear isn't a good thing- sure you don't want to put strain on the heart by having a high BMI, but you need padding to reduce the risk of pressure sores.
Then there's the neck. Your lower back muscles work hard to keep you upright, and your intercostals (between your ribs) to keep you breathing. José can't use these muscles so his neck and jaw muscles are compensating. Yes he's developed the neck of a rugby player, but those muscles are pretty darn trim, working hard day after day to keep his head up and his lungs expanding. Why do these things always happen to the fittest people? They don't, only the fittest survive.
José has also had to get used to 'casual attire'.  Not previously a man who would go out in jogging bottoms, now they and over-sized tops are the most suitable clothes. And we've both had to get used to cold food as meals take a long time to eat.

How has Bradley changed? At the time of José's accident Bradley was 11 months old. José was definitely the fun one, whilst I the boring disciplinarian. José provided rough play, fast play and belly rubs. Bradley was with José when he came off his bike. He knew something was wrong, raised the alarm and then was dragged away by a stranger. He was brought home and then didn't see José again. Lots of other people came to the house, some stayed an hour, others stayed a week, lots took him for walks but none were his master. Bradley was obviously stressed in this period - he went back to eating shoes, walls, cupboards. And then one day I took him up to the hospital. He waited in the garden whilst I went in. He was excited to see me when I came out - then he went stock still, pointer style, his nose twitching his eyes alert. He recognised José, and went straight to his face for kisses.
Since that day Bradley absolutely concentrates on José's face - where he might grab everyone else's fingers and hands in his mouth, with José it's only his ears and nose (lucky José).  I wish we could all be more like Bradley - he doesn't see the disability, or get upset about what might have been, he just loves José however he is.
Bradley can now recognise when José needs a cough, we're working on him barking for the carers attention.  He's very protective of José, and attentive to commands when José has treats about his person.  He's getting good at walking to heal with the wheelchair and clearing the path of sticks and other hazards.  We want to get him properly trained as an Assistance Dog but appropriate training is hard to find.
Play is limited, but with help from the local pet supply store we've found biscuits of an appropriate size and weight for ... a PEA-SHOOTER!  José's breath is still weak but the more we play the better it gets and the further the biscuit travels - we're expecting the NHS to adapt this as respiratory training.

And the house?  How are we managing at home?  Carers are a whole blog on their own, so maybe I will talk about that next time.  Needless to say having a stranger living in your house 24/7 takes some getting used to.  You'd quite rightly think long and hard about renting a room out to a lodger, so to have no say in the matter isn't easy but is necessary.
We live in a three bed semi-detached house so fortunately had room for a full-time carer (they need a bed, wardrobe, somewhere to sit, and ideally TV and internet) and a box room for my office and the second handover carer.  Fortunately it has two reception rooms on the ground floor so by moving furniture around we were able to make one room a ground-floor bedroom.  In this room we have a hospital bed (profiling and height adjustable), a gantry hoist over the bed, a wardrobe, two sets of drawers for medical supplies, an over-bed table, a table and two chairs for carers to complete paperwork, and a TV.  Plus other homely bits and bobs. And we still need to have room for the wheelchair.  We don't have a ground floor bathroom, so José relies on bed baths.
We can just about maneuver him around the rest of the ground floor; a galley kitchen, a sitting room and a conservatory / dining room; with the use of ramps but it's tight and very physical.  We've put a ramp in the garden and with the use of a carpet across the grass, some ply across the gravel and a ramp up the steps José can get to the rear patio and BBQ.  But it's not ideal.
We could rebuild the ground floor of the house to change the doorways, level out the floors and to install a wet room; but we could never create enough space for us to share a room or give José access to the whole of his house.  We also can't move the shops, station or (most importantly) the pub closer, and we can't level out the hill that we live on.
All things considered it makes sense for us to find a new home.  We are making do at the moment but we want to find somewhere that will give José freedom both in and out of the house.  A place where we can get back to living life together.

I will finish with a little one year celebration.  Five things we couldn't guarantee a year ago...

1. José survived!
2. José learnt to breathe without a ventilator and the tracheostomy was been reversed.
3. José can swallow liquids and solids and his PEG has been removed.
4. José came home.
5. José takes control of his care and his life despite a minor brain injury.

Thank you for all your hopes, prayers and support this year - you've got us through.

Month 11 - Holiday

25th March 2016 marked eleven months since José broke his neck. He's been home from hospital two months (a 1930s semi in hilly SE London). We can't adapt the house but we  are adapting our lives, more about this next month.

This month José and I were spoilt with a holiday, a whole week away - just the two of us - well, plus Bradley and Zofia.
First of all we had to plan when to go.  We needed to be sure José was discharged from hospital, and that it was a week without further appointments.  Like any holiday it had to fit my work commitments and my colleagues' holidays. But it also had to fall between shift start and end dates for our live-in carer (not easy when they do two weeks on, two weeks off), and ideally be when Zofia was on shift - oh, and it had to be before the prices hiked for Easter.
Then there's where to go? We needed a wheelchair accessible property. With a roll in shower, and a shower chair - because it's bed baths at home. A height adjustable profiling bed with a hoist in a twin room - we're on different floors at home. A second bedroom for the carer and somewhere that welcomes dogs. Places that match this criteria are few and far between, so when I found Hoe Grange Farm was available the week we wanted we booked it. We didn't really care where it was!
Fortunately Hoe Grange Farm is a real find. A collection of luxury self catering lodges on a south Peaks farm. Each is accessible for different needs,  there's even one with a hoist over the hot tub. The site is environmentally sustainable using an underground heating system, solar and wind power, which interested José. And the local information pack included not just wheelchair accessible attractions but also to dog friendly places too - making our days out easy to plan.
And then we had to pack. We were driving so we had the car for me, Jose, Zofia and Bradley.  It was February/March so we'd need cold weather layers plus waterproofs and wellies so that's 2 bags each (Bradley made do with just the one bag of towels, toys and treats plus his bed). It was self catering so I needed my camping box of essentials - herbs, spices, oils, food for 24hours and wine. Then there's the medical equipment, such as the cough assist machine which keeps José's lungs exercised, medications and dressings etc = an extra 2 bags. We had a panic on Friday night when we realised in the handover between carers no one had placed the repeat prescription request; a call to the 111 service saw an emergency prescription raised for the duration of our trip. Finally we needed pillows. Yes, pillows were provided but José sleeps with eight, and most get folded to better support a limb, so we needed to take some spares. Yup, the car was going to be cosy - so we got a roof box.

A week in the Peaks with a wheelchair might not sound ideal but we found plenty to get up to. I'm planning on creating a website with more details of the walks we go on (working title "Bradley Barretta's Walks With Wheels") but here's a taste of what we got up to.
Day 1, we met a friend and her two dogs for a walk at Carsington Water. A very windy reservoir with a handy cycle track, and an upstairs café selling an excellent selection of cake.

Day 2, still very windy so we used our National Trust membership to visit Hardwick Hall. A volunteer gave us a private tour of the ground floor before we explored the formal gardens, then had enormous ginger and rhubarb scones in the café.

Day 3, I ran with Bradley and a stow away farm Jack Russell called Fudge along the High Peak Trail (disused railway) to Cromford where I met up with José and Zofia for a canal side walk to a café.

Day 4, we got snowed in. But frankly we were all ready for a rest, and with a reclining armchair available José was very happy with the first change of seat in ten months.

Day 5, José woke with a temperature and feeling a bit unwell. We called 111 again, not easy when phone signal was nonexistent. A doctor came, but by then José was feeling much better. He got the all clear and went to Buxton where Bradley and I waded through knee high snow whilst José and Zofia went caving. OK, not caving exactly but Poole's Cavern is wheelchair accessible (also has a café).

Day 6, A unique opportunity at Hoe Grange was the chance to try out the Boma 7.  The Boma 7 is an all terrain wheelchair, Zofia and I were happy to demonstrate it's capabilities across the farm land (this one was hand control, but they are available with head controls).   José, Bradley and I then gave Zofia the afternoon off. We went to Tissington and walked along the Tissington trail (another disused railway). We did about 3.5miles before we reached an impassable gully - apparently there used to be a bridge. Sadly we were too late for the café so we had to stop for a takeaway.

Day 7, we stopped at the National Arboretum on our way home. A place well worth a stop, lots of sculptures and landscapes providing opportunities to reflect on sacrifice and loss; plus, you'll be relieved to hear, not one but TWO cafés!

And that was our holiday, a welcome escape.

Welcome!

Hello and Welcome to this Blog about how José and I are learning to conquer Tetraplegia (paralysis of all four limbs).

Following José's accident in April 2015 I communicated with friends and family via facebook and email.  I am using this blog to allow all those people to opt in or out of our updates as they wish.  On the left are pages with the 'pre-blog updates' - the story so far.

I hope our continuing journey will be full of laughter and inspiration.

Thanks for joining us. xx