Latest news from Putney

Chris Marchington and Claire Trigger went in to see the team and they wanted to post this important update.

“I went with Claire to the panel meeting at the neuro disability specialist hospital in Putney on Thursday afternoon, as Will’s representatives. There were two doctors, Dr. Hanrahan who is the lead medical specialist, and a second doctor who supervises his drug regime. There was also his social worker, his physio / lead nurse, and a researcher who specialises in using music to stimulate brain activity. You could not have asked for a more dedicated or caring team.

They took us through a long report (c. 20 pages) which covered every aspect of Will’s care and current state. The purpose of the document is to log the last ten weeks assessment and care provided, and to marshall the facts for the clinical commissioning group who will be be instrumental in deciding what happens next. The key decisions are, of course, where does Will go next and what type of care does he get. Compared to how he was in January, he looks so much better – he’s put on weight, and some time in the sun has put some colour back in his cheeks. He’s not in any danger physically (unless he catches an infection) and all his organs are functioning – except of course, for his brain. His team have noted no improvement in his responses to stimuli, and all movements are made for him, such as turning him, sitting him up, putting him in his wheelchair etc. They have to conclude that he is minimally conscious, and see no probability of that changing. All they can do, and all they can recommend, is keeping him physically comfortable.

His next ‘home’ will offer both the necessary caring and medical skills to cater for his complex needs. They expect this will be from early September. I am sorry I have no better news to pass on, but the Royal Hospital for Neuro-Disability team are meant to be amongst the best in the country, and would not raise any false expectation for a change in his state.

I am thrilled they have been using music therapy, highly appropriate for our Willum, so he will add to an extraordinary piece of experimental treatment that may benefit others. He even, thanks to Paul Cartledge tracking down tapes, got to listen to some of his own tunes, as well as other favourites.

The social worker summed it up as she was showing us out. She said Will seemed like a man she’d would have really loved to have met, given everything she’d heard about him. Let’s all keep our memories of Will alive, and do what we can with our visits and gifts to add variety, interest, and love to his life – even though he may not consciously know who we are or what we are doing.”

Thank you to Chris and Claire for going in and I trust more of us will make the effort to visit when we can.  I look forward to meeting up with Michael Banks and a few others when I visit Will on August 16th.

As Chris so rightly says, please keep you memories of Will alive, but go and see him and make whatever time he has left full of his memories of you.

Click on this map to see where it is……

Progress in Putney

A few people have been in to see Will at the specialist charity hospital in Putney, so this post contains a few pictures of how he is doing.  The hospital is The Royal Hospital for Neuro-Disability and they combine clinical care with specialist therapies and innovative technologies making makes a vital difference to the lives of profoundly disabled adults with acquired brain injuries and degenerative neurological conditions, such as Huntington’s disease.  Music is a big part of rehabilitation, which will please Will as he is such a music lover.

They are fund raising for a new state of the art Therapy Hub. Rehabilitation takes place in two gyms, on the wards and in ad hoc space, which means that patients can often be seen learning to walk again along the main corridor. Both of the gyms are dated, lack privacy and are in desperate need of modernisation.

Despite these less-than-ideal facilities, they get lots of positive feedback from patients and families, and their Brain Injury Service was recently shortlisted for a LaingBuisson Award for service excellence.  Imagine how they could help their patients if they could upgrade these facilities. You can donate here – https://www.rhn.org.uk/support-us

Here are some very recent pictures of Will including the latest from his dear friends Richard and Yvonne who came up from Devon again to visit.  Thanks to all of you who have been in and I look forward to seeing more of you in August when I come over again. (For some reason I can’t post the pictures! I will attempt to fix this or post them on a new page)

Happy 60th Birthday, Will

Congratulations Will, you made it!  You’re 60 today and have just had the most incredible year of your life and many more ahead of you.

Here’s Stevie to sing it to you live!

And thank you to Sara Reeve, her 4 daughters, Richard and Karen for bringing in birthday cards and decorating for him during their busy day.

Thanks to Helena Dennison for traveling from north London to bring him a lovely birthday cake. See the pics below.

They had to blow them out shortly after as someone else was on oxygen!!

When you ask for help, you get miracles

After struggling through the first week of finding someone in Mill Valley who could speak Spanish so I could talk to the doctor in Tarapoto, then flying down to Lima and spending an anxious 4 days visiting Will in the UCI (ICU), I had the choice of going back or staying on another week. I needed a miracle.

I didn’t know what to do and literally prayed for help. My prayers were answered when I was contacted from a Facebook group of ex-pat Brits in Lima and arranged to meet a half Scottish/half Peruvian woman who said she might be able to help.  And that meeting created a lifelong bond between Will and his guardian angel.

Today, I want to honor Denise Crisanto Clark, who became Will’s guardian angel and daily visitor a year ago this day.  She is deserving of our special recognition after dedicating herself to being by his side day after day, on our behalf, for 10 months until she delivered him safely back to England.

Denise has the biggest heart, tireless positive energy, incredible generosity and a deep belief in the power of the human spirit and I believe Will is only here because of her love and encouragement.

Thank you Denise. My deepest respect to you, for all that you did.

Remember that it’s Will’s 60th birthday this Thursday, April 13th.  Helena Dennison and her daughter Andrea will be taking in a cake at 2pm to share with him and the nurses on the Tilgate Ward so please come and join them. I know he will love seeing you and realizing it’s his big day.

And if you are asking for a little help with a few miracles yourself, just ask. “Fear not, little flock, for it is your Father’s good pleasure to give you the kingdom.”

 

 

1 Year later

Today is 1 whole year since Will’s accident.  Today, a year ago, his life changed in an instant from a small miscalculation perhaps, or a slight imbalance, or who knows what. But his life was put on a different course in that moment.

I have looked back on that day many times; from the first post on Facebook which caught my eye late at night just as I was going to bed, to the following morning dreading what I might find on subsequent posts from multiple friends.  At first I was told it might be a hoax, you know -one of those “I’ve lost my wallet on holiday and need you to send me some money” type hoaxes.  But quickly I realized it wasn’t a hoax,  but a very serious situation which I felt was truly life threatening.  Falls onto your head are always bad and they induce all sorts of trauma related effects. Having been a practitioner of brain harmonization neurofeedback for 2 years, I knew what this meant. It meant physical, emotional and mental problems which would need long term attention, that is if he survived.

Like many of you, there were thoughts that it might be best for him not to survive – I know you thought that and I know the feeling that lurks in the depths below that lets the question of our mortality intrude into our personal space.  And our dear friend Will, who we may not see that often yet brings such a smile to our insides when we think of, is suddenly on the brink of not being here any more. He was very nearly not here and hundreds of people around the world had his life in their hands.

And now he is in good hands at East Surrey Hospital where he is definitely showing signs of getting better, being more present, stronger and determined to be here against all the odds, with your help, love and encouragement.

Think of him today and in the coming days leading up to his 60th birthday on April 13th when I hope some of you will be able to make it in to see him and celebrate him still being here.

New haircut

The wonderful Sara, Richard & Karen organized for Will to get a haircut and manicure so he is now sporting a cool spring do!

Many thanks to Zoe who is one of the ambulance crew that works with Richard and Karen, who came in to do this for him. He looks like he is enjoying the attention!

Also, Helen Chilvers and Katy (Hooper) Attwater came in on Friday and had a wonderful time with him and noticed how active he was in tracking them with his eyes when they were speaking. I am sure this is a result of how hard the physio-therapists are working with him even though he gets tired at the end of the day. And he visibly melts when they were giving him neck massages and loads of kisses which was lovely to see.

Claire Trigger has also been in again as well as Sara Reeve who continues to check in on him before going home at the end of her long days.

As spring is around the corner and it will soon be 1 year since he had his accident and a few more weeks to his 60th birthday on April 13th, I would like you all to make a super human effort to make it in to see him.  He has no-one but us to punctuate his long days in hospital and I know how much he enjoys his massages and kisses.

Weekend visitors

I have been quiet these past few weeks just so I could catch up with my own life and see what transpired with Will’s care in the East Surrey hospital and get updates from his visitors.

My thanks to Brigitte Jaquillard, Richard Paddon, Chris Marchington and Holly Spice for visiting his past week and for the ongoing visits from the wonderful Sara Reeves.  Richard and Karen Hartley also visited (after clearing up that awful cold) and his ongoing physiotherapy now includes regular trips outside in his wheelchair to see the sunshine, clouds and trees and hear the birds, something I know he loves. He also gets some sessions to get his legs stronger and other sessions trying to get him to move his eyes in response to cards with yes and no on them.

Will gets some love from his long time friends Richard and Yvonne Paddon who came up again all the way from Devon.

If you haven’t yet been to visit, I encourage you to do so to give him much needed contact and reminiscence therapy which helps to rebuild association and memory.

The staff are doing their best with him especially the different therapy teams who are getting him up and out of bed, sitting in his chair and motivating him.  He could do with a lot more neck massages so be prepared to give them when you visit. He literally melts with pleasure when you do!

I will update as I get more information and the proposed transfer to the specialist hospital.  If you have any questions, please email using the Contact page on this site and I will do my best to respond as quickly as I can.