James Brown - Guillain-Barre Syndrome
Donation protected
Update 8/4/20
496 Days…..
Finally the day we have all waited for has arrived. James was released from John Hunter Hospital and Rankin Park Rehab today.
He was admitted on 29th November 2018, 496 days ago. James will be moving into a unit in Warners Bay that will house him and a carer. He will still need round the clock care as he is still paralysed in his feet and hands. Unfortunately no-one can predict when this will end.
This hasn't affected his stellar positive attitude and sense of humour. He has managed to gain employment on a contract basis AND set up his own company - all from the hospital bed. He is truly inspirational.
The experience James has gained from his former job as CEO of a disability housing organisation in Sydney, coupled with now experiencing disability first hand, has led him to be able to secure contract work with a local organisation which focuses on disability housing. James is tasked with designing the first prototype - that eventually he, Karyn and the girls will live in together. This will hopefully be ready early next year. He is really looking forward to receiving his first paycheck in 16 months!
James' improvement (albeit slowly ) can be put down to the hard yards he has been putting in over the last 12 months in his rehab. He has amazed the staff, and been an inspiration to many other patients who have been on the verge of giving up. He is a wizard in his electric wheelchair, and drives up a ramp into the taxi and gets about!
It's been an unbelievable and trying experience for all involved. Dad (Phil) has been by his side every single day and we are sure that has enabled James to be where he is today. Dad has had to go back to Coffs Harbour now because of COVID-19.
James; We are so proud of you and how you have kept such a positive attitude throughout this horrific ordeal. YOU’RE BACK BABY!!!
To our friends, family, public; Karyn, Lilly, Mia & Bella, Dad, Mum, Katrina & I thank you for all of your well-wishes and kind donations. We could not have done it without you.
To the exceptional staff at John Hunter Hospital and Rankin Park Rehabilitation; Thank you from the bottom of our heart for everything you have done for James.
Kristy
___________________________________________________________________________________________________________________________________________________________________
Update 17/5/19
Apologies for the delay with this update.
2 weeks ago James finally had his "trachy" removed and is beginning to learn to speak again. On Tuesday he had his first main meal in over 6 months. (He never thought pureed chicken could taste so good!!). He is still supplemented via the feeding tube in his stomach as he continues to rebuild the muscles in his mouth, tongue and re-learn to swallow again. He is also concentrating hard on improving his speech.
It's hard to slow him down, but Parra's thumping last week, might quieten him for a few days!
This means that finally he has left the general hospital ward, and has been moved to the Rehab Hospital (called Rankin Park ) which is still in the grounds of the John Hunter Hospital precinct. This will be his home for quite a few months to come.
He has started intensive rehab (OT, Physio, Speech therapy, massage). See a short movie from today’s rehab effort. They really put him through the pain barrier, but as usual, no complaints from him for the Physios (terrorists he calls them). Just his piercing glare is enough for them to back off for a while. There is some small improved movement in his shoulders and arms and some flexing in the upper legs.
He can sit up in his wheelchair and no longer needs head support.
James was able to leave the hospital last Sunday in a wheelchair taxi to spend 3 hours with his wife & daughters for Mother's Day and to attend church. His first visit outside JHH in 6 months!!. It was a massive milestone.
We are so proud of the fight he is putting up to try to get somewhere near his old self. Everyone is amazed by his positive attitude. He has had a few visits from work colleagues who keep him informed on how well some of the the projects are going, that he set in motion before being struck down. He is thrilled to hear of the progress.
Thank you for your continuing well wishes and support. This is a real team effort to get him over the line and each and everyone of you reading this has played a part.
Until next time!
Kristy
Update 22/3/19
After 103 days in ICU, James has been moved to the general ward last week. He has breathed on his own now for two weeks.
The ICU nurses, doctors and physios have been sensational to be able to get him to this stage along with his wife and daughters and especially his Dad Phil who has spent every single day by his bedside since he went in. Along with, of course, his determination and the good wishes of so many people.
He has no arm and leg movements yet, although he has been able to slightly flex some small muscles below the elbows, and in his quads. So, we are still in for the long haul.
In other great news, last week he received an eye tracking computer so he can type letters and words with his eyes (see video). This has given him such a lift being able to communicate.
xx
Update 15/2/19
Since our last update James has been a true Superman (as seen in the picture here - his first article of clothing worn in over 10 weeks)!.
He is still paralysed from the neck down. However, he is working so hard on his rehab. He is channelling his inner Cadel Evans almost daily on the bike (they strap his legs in and the machine does all the work for him).
He has commenced speech therapy and with the trachy in its so very hard, but he has said a few words to us (a-la-Stephen Hawkings) that have given us all such a great positive push forward.
He is reducing his reliance on the ventilator – they are taking him off for several hours a day as he works to build back up his lung capabilities.
There is still a very long journey ahead of us and we are taking each day as it comes and trying to be as optimistic and positive as we can be.
AND his middle daughter Mia turned 15!!!
Karyn, Lilly, Mia & Bella send their heartfelt thanks to you all for your positive thoughts, prayers and donations. It has been a real community effort and we cannot thank you enough.
Update 11/1/19
The family have been overwhelmed by the amazing response to this page. We cannot thank each one of you for your generosity and kind words. James has been uplifted by these comments that we are reading out to him as they come in. James was able to go outside for a short time yesterday and enjoy this lovely sunshine and was beautifully serenaded to by his daughter Lilly on her 18th birthday .
About James
Otherwise completely fit and healthy (except for the flu), within a 24-hour time period on the 29th of November 2018 James quickly became completely paralysed from the mouth down. He is unable to breath on his own, talk, or move any part of his body. He can only communicate by eye blinks and an alphabet board. He has since been diagnosed with Guillain-Barré syndrome or commonly known as GBS.
James Brown (46) is a loving & devoted husband and the father of 3 beautiful girls living in Newcastle NSW. James is a community man heavily involved in sport and the church. James commuted daily to Sydney to work in his dream job for a leading not-for profit co-operative organisation which provides at-risk groups with social housing.
Currently he in the ICU at John Hunter Hospital. James has already endured several surgeries, including a tracheotomy, and feeding tube inserted into his stomach. James is expected to be in hospital for at least 12 months with a long recovery expected.
Guillain-Barré syndrome (GBS)
Guillain-Barrè syndrome is an autoimmune condition in which the person’s nerves are attacked by the body’s own immune defence system. As a result of the attack, the nerves are damaged, and signals are delayed or otherwise changed, causing paralysis and muscular weakness of the limbs.
More information can be found here:
http://www.guillainbarresyndrome.org/
How can you help?
Unfortunately, James did not have income protection. As such, his family will experience ongoing financial challenges.
Your generous donations will relieve the financial pressure on James’s family and will be used to cover ongoing medical costs, and household support for his wife Karyn and his daughters during this difficult time.
Thank you so much for your consideration.
496 Days…..
Finally the day we have all waited for has arrived. James was released from John Hunter Hospital and Rankin Park Rehab today.
He was admitted on 29th November 2018, 496 days ago. James will be moving into a unit in Warners Bay that will house him and a carer. He will still need round the clock care as he is still paralysed in his feet and hands. Unfortunately no-one can predict when this will end.
This hasn't affected his stellar positive attitude and sense of humour. He has managed to gain employment on a contract basis AND set up his own company - all from the hospital bed. He is truly inspirational.
The experience James has gained from his former job as CEO of a disability housing organisation in Sydney, coupled with now experiencing disability first hand, has led him to be able to secure contract work with a local organisation which focuses on disability housing. James is tasked with designing the first prototype - that eventually he, Karyn and the girls will live in together. This will hopefully be ready early next year. He is really looking forward to receiving his first paycheck in 16 months!
James' improvement (albeit slowly ) can be put down to the hard yards he has been putting in over the last 12 months in his rehab. He has amazed the staff, and been an inspiration to many other patients who have been on the verge of giving up. He is a wizard in his electric wheelchair, and drives up a ramp into the taxi and gets about!
It's been an unbelievable and trying experience for all involved. Dad (Phil) has been by his side every single day and we are sure that has enabled James to be where he is today. Dad has had to go back to Coffs Harbour now because of COVID-19.
James; We are so proud of you and how you have kept such a positive attitude throughout this horrific ordeal. YOU’RE BACK BABY!!!
To our friends, family, public; Karyn, Lilly, Mia & Bella, Dad, Mum, Katrina & I thank you for all of your well-wishes and kind donations. We could not have done it without you.
To the exceptional staff at John Hunter Hospital and Rankin Park Rehabilitation; Thank you from the bottom of our heart for everything you have done for James.
Kristy
___________________________________________________________________________________________________________________________________________________________________
Update 17/5/19
Apologies for the delay with this update.
2 weeks ago James finally had his "trachy" removed and is beginning to learn to speak again. On Tuesday he had his first main meal in over 6 months. (He never thought pureed chicken could taste so good!!). He is still supplemented via the feeding tube in his stomach as he continues to rebuild the muscles in his mouth, tongue and re-learn to swallow again. He is also concentrating hard on improving his speech.
It's hard to slow him down, but Parra's thumping last week, might quieten him for a few days!
This means that finally he has left the general hospital ward, and has been moved to the Rehab Hospital (called Rankin Park ) which is still in the grounds of the John Hunter Hospital precinct. This will be his home for quite a few months to come.
He has started intensive rehab (OT, Physio, Speech therapy, massage). See a short movie from today’s rehab effort. They really put him through the pain barrier, but as usual, no complaints from him for the Physios (terrorists he calls them). Just his piercing glare is enough for them to back off for a while. There is some small improved movement in his shoulders and arms and some flexing in the upper legs.
He can sit up in his wheelchair and no longer needs head support.
James was able to leave the hospital last Sunday in a wheelchair taxi to spend 3 hours with his wife & daughters for Mother's Day and to attend church. His first visit outside JHH in 6 months!!. It was a massive milestone.
We are so proud of the fight he is putting up to try to get somewhere near his old self. Everyone is amazed by his positive attitude. He has had a few visits from work colleagues who keep him informed on how well some of the the projects are going, that he set in motion before being struck down. He is thrilled to hear of the progress.
Thank you for your continuing well wishes and support. This is a real team effort to get him over the line and each and everyone of you reading this has played a part.
Until next time!
Kristy
Update 22/3/19
After 103 days in ICU, James has been moved to the general ward last week. He has breathed on his own now for two weeks.
The ICU nurses, doctors and physios have been sensational to be able to get him to this stage along with his wife and daughters and especially his Dad Phil who has spent every single day by his bedside since he went in. Along with, of course, his determination and the good wishes of so many people.
He has no arm and leg movements yet, although he has been able to slightly flex some small muscles below the elbows, and in his quads. So, we are still in for the long haul.
In other great news, last week he received an eye tracking computer so he can type letters and words with his eyes (see video). This has given him such a lift being able to communicate.
xx
Update 15/2/19
Since our last update James has been a true Superman (as seen in the picture here - his first article of clothing worn in over 10 weeks)!.
He is still paralysed from the neck down. However, he is working so hard on his rehab. He is channelling his inner Cadel Evans almost daily on the bike (they strap his legs in and the machine does all the work for him).
He has commenced speech therapy and with the trachy in its so very hard, but he has said a few words to us (a-la-Stephen Hawkings) that have given us all such a great positive push forward.
He is reducing his reliance on the ventilator – they are taking him off for several hours a day as he works to build back up his lung capabilities.
There is still a very long journey ahead of us and we are taking each day as it comes and trying to be as optimistic and positive as we can be.
AND his middle daughter Mia turned 15!!!
Karyn, Lilly, Mia & Bella send their heartfelt thanks to you all for your positive thoughts, prayers and donations. It has been a real community effort and we cannot thank you enough.
Update 11/1/19
The family have been overwhelmed by the amazing response to this page. We cannot thank each one of you for your generosity and kind words. James has been uplifted by these comments that we are reading out to him as they come in. James was able to go outside for a short time yesterday and enjoy this lovely sunshine and was beautifully serenaded to by his daughter Lilly on her 18th birthday .
About James
Otherwise completely fit and healthy (except for the flu), within a 24-hour time period on the 29th of November 2018 James quickly became completely paralysed from the mouth down. He is unable to breath on his own, talk, or move any part of his body. He can only communicate by eye blinks and an alphabet board. He has since been diagnosed with Guillain-Barré syndrome or commonly known as GBS.
James Brown (46) is a loving & devoted husband and the father of 3 beautiful girls living in Newcastle NSW. James is a community man heavily involved in sport and the church. James commuted daily to Sydney to work in his dream job for a leading not-for profit co-operative organisation which provides at-risk groups with social housing.
Currently he in the ICU at John Hunter Hospital. James has already endured several surgeries, including a tracheotomy, and feeding tube inserted into his stomach. James is expected to be in hospital for at least 12 months with a long recovery expected.
Guillain-Barré syndrome (GBS)
Guillain-Barrè syndrome is an autoimmune condition in which the person’s nerves are attacked by the body’s own immune defence system. As a result of the attack, the nerves are damaged, and signals are delayed or otherwise changed, causing paralysis and muscular weakness of the limbs.
More information can be found here:
http://www.guillainbarresyndrome.org/
How can you help?
Unfortunately, James did not have income protection. As such, his family will experience ongoing financial challenges.
Your generous donations will relieve the financial pressure on James’s family and will be used to cover ongoing medical costs, and household support for his wife Karyn and his daughters during this difficult time.
Thank you so much for your consideration.
Organizer
Kristy Slatter
Organizer
Belmont, NSW