Help Ben Walk Again After Spinal Cord Injury
Donation protected
My Story:
In June 2016 my legs became weak and I collapsed on the train on my way to work. With great difficulty I crawled onto the platform and managed to get a taxi to take me to A&E. After being seen by a several doctors they said that they would like to keep me in overnight to run some tests. 1 night to turned into 6 with each passing day my lower limbs got weaker and after many blood tests, lumbar punctures, MRI and CT scans I then got transferred to a Neurological hospital. After my first night when I awoke I attempted to get out of bed and collapsed on the floor this time I could not get back up. My legs didn't work and I could feel nothing from the waist down which was terrifying.
I continued to have more tests but the medical team could not find any definitive diagnosis. Transverse Myelitis was thought to be the closest cause. Transverse Myelitis is a rare neurological condition in which the spinal cord is inflamed. The inflammation extends across the entire width of the spinal cord which interrupts the messages that the spinal cord nerves send throughout the body. This causes pain, muscle weakness, paralysis, sensory problems, bladder and bowel dysfunction. Intensive medical investigations were carried out and I was treated with a high dose of steroids then I had Plasma Exchange and Intravenous immunoglobulin treatment.
The following 2 months I continued on a very heavy invasive medication regime. During this time my body had become extremely fragile and then I caught a bacterial infection which turned out to be Sepsis. At this point the paralysis started to spread throughout my body rendering total paralysis from the neck down. The infection was treated but I still remained paralysed. The decision was taken to send me to a specialist rehabilitation unit but there was a 2 month wait for a bed. During this time with my immune system being suppressed I developed Endocarditis which is a life threatening heart condition. I was then moved to an isolation unit and had a heavy dose of IV treatment pumped into me every 3 hours for 8 weeks.
When I was finally infection free and after 8 months I was transferred to a rehabilitation spinal unit. Following a new line of treatments I started to regain some movement in my fingers and after a 3 month program I was able to sit-up, rollover and feed myself. Unfortunately despite intensive physiotherapy and ongoing high dosage invasive medication I remained paralysed. I was then discharged after spending 11 months in hospital which in hindsight my agreement to be discharged was a bit premature (but was so keen to be home) unfortunately the home care I should have received was not put in place and I struggled greatly unable to undertake the simplest of personal tasks myself however determined I was. This put huge pressure on my personal/home life destroying my relationship with my partner. My whole life became totally life changing, unable to work and the realisation I could lose my home. The possibility of me finding further suitable accommodation with access for wheelchair and personal care causes further pressures. The lack of care for the disabled/spinal injury patients has been a real eye opener to the vast number being neglected in this area. My family were and continue to be very supportive however the geographic's involved makes it very difficult. I would also like to thank my close friends who have also been amazing and kept me going under very difficult circumstances.
I still have no diagnosis on my condition and I have been told that I will never find out what happened to me. Living with this condition has made me very isolated and lonely and I go to sleep most nights praying that I won't wake up in the morning. Everyday is a battle but I continue to push through and 18 months on from discharge and with a lot of hard work my condition has improved and from a C8 Tetraplegic, I am now a T4 Paraplegic. I have been told that I shouldn’t get my hopes up about ever walking again but I am starting to get muted sensation in my lower limbs and have been able to walk a few meters on a frame. The rehabilitation I have received on the NHS has been fantastic but I have only been entitled to an hour a week which has now been dropped down to once a month greatly reducing any further improvement as it’s not safe for me to undertake certain rehab routines on my own.
There is a state of art Gait Therapy which uses exoskeleton robotics which retrains the body and brain to walk again. As I have begun to take steps already this therapy could have a huge positive impact on my recovery. Unfortunately this therapy is not available on the NHS. I have spoken to facilities in Germany and Poland who use Lokomat which is the worlds leading robotic medical device. They have programs designed for me which would consist of 4 x 1 hour sessions a day, 6 days a week for 8 weeks and I am hoping to raise £15,000 which will cover the therapy costs.
Thank you so very much to all of you who can donate no matter how small it would make a huge difference to enable me to try and and move my life forward in a positive way. Again I would like to give a huge thank you to my family and amazing friends, for their continued support without who I would not have made it thus for. I am determined to carry on and push through the barriers enforced on me.
Ben xx
In June 2016 my legs became weak and I collapsed on the train on my way to work. With great difficulty I crawled onto the platform and managed to get a taxi to take me to A&E. After being seen by a several doctors they said that they would like to keep me in overnight to run some tests. 1 night to turned into 6 with each passing day my lower limbs got weaker and after many blood tests, lumbar punctures, MRI and CT scans I then got transferred to a Neurological hospital. After my first night when I awoke I attempted to get out of bed and collapsed on the floor this time I could not get back up. My legs didn't work and I could feel nothing from the waist down which was terrifying.
I continued to have more tests but the medical team could not find any definitive diagnosis. Transverse Myelitis was thought to be the closest cause. Transverse Myelitis is a rare neurological condition in which the spinal cord is inflamed. The inflammation extends across the entire width of the spinal cord which interrupts the messages that the spinal cord nerves send throughout the body. This causes pain, muscle weakness, paralysis, sensory problems, bladder and bowel dysfunction. Intensive medical investigations were carried out and I was treated with a high dose of steroids then I had Plasma Exchange and Intravenous immunoglobulin treatment.
The following 2 months I continued on a very heavy invasive medication regime. During this time my body had become extremely fragile and then I caught a bacterial infection which turned out to be Sepsis. At this point the paralysis started to spread throughout my body rendering total paralysis from the neck down. The infection was treated but I still remained paralysed. The decision was taken to send me to a specialist rehabilitation unit but there was a 2 month wait for a bed. During this time with my immune system being suppressed I developed Endocarditis which is a life threatening heart condition. I was then moved to an isolation unit and had a heavy dose of IV treatment pumped into me every 3 hours for 8 weeks.
When I was finally infection free and after 8 months I was transferred to a rehabilitation spinal unit. Following a new line of treatments I started to regain some movement in my fingers and after a 3 month program I was able to sit-up, rollover and feed myself. Unfortunately despite intensive physiotherapy and ongoing high dosage invasive medication I remained paralysed. I was then discharged after spending 11 months in hospital which in hindsight my agreement to be discharged was a bit premature (but was so keen to be home) unfortunately the home care I should have received was not put in place and I struggled greatly unable to undertake the simplest of personal tasks myself however determined I was. This put huge pressure on my personal/home life destroying my relationship with my partner. My whole life became totally life changing, unable to work and the realisation I could lose my home. The possibility of me finding further suitable accommodation with access for wheelchair and personal care causes further pressures. The lack of care for the disabled/spinal injury patients has been a real eye opener to the vast number being neglected in this area. My family were and continue to be very supportive however the geographic's involved makes it very difficult. I would also like to thank my close friends who have also been amazing and kept me going under very difficult circumstances.
I still have no diagnosis on my condition and I have been told that I will never find out what happened to me. Living with this condition has made me very isolated and lonely and I go to sleep most nights praying that I won't wake up in the morning. Everyday is a battle but I continue to push through and 18 months on from discharge and with a lot of hard work my condition has improved and from a C8 Tetraplegic, I am now a T4 Paraplegic. I have been told that I shouldn’t get my hopes up about ever walking again but I am starting to get muted sensation in my lower limbs and have been able to walk a few meters on a frame. The rehabilitation I have received on the NHS has been fantastic but I have only been entitled to an hour a week which has now been dropped down to once a month greatly reducing any further improvement as it’s not safe for me to undertake certain rehab routines on my own.
There is a state of art Gait Therapy which uses exoskeleton robotics which retrains the body and brain to walk again. As I have begun to take steps already this therapy could have a huge positive impact on my recovery. Unfortunately this therapy is not available on the NHS. I have spoken to facilities in Germany and Poland who use Lokomat which is the worlds leading robotic medical device. They have programs designed for me which would consist of 4 x 1 hour sessions a day, 6 days a week for 8 weeks and I am hoping to raise £15,000 which will cover the therapy costs.
Thank you so very much to all of you who can donate no matter how small it would make a huge difference to enable me to try and and move my life forward in a positive way. Again I would like to give a huge thank you to my family and amazing friends, for their continued support without who I would not have made it thus for. I am determined to carry on and push through the barriers enforced on me.
Ben xx
Organizer
Ben Robbins
Organizer
England