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Therapies Matter Patient Story

Kevin’s story – why therapies matter

“My name is Kevin and in 2013 I had a subarachnoid haemorrhage, basically a bleed on the brain. It was on one Saturday morning when I noticed that I felt a little dizzy and sick so I had a lie down. I then went to the bathroom and was sick and within seconds I was sweating and I told my girlfriend that I felt really ill. She called for an ambulance, and they decided to take me to the RUH to stabilise me before transferring me to the specialist brain unit at Frenchay.

“The subarachnoid haemorrhage meant that a blood vessel had burst at the base of my brain and the blood that should’ve gone to my brain went between my brain and skull and in turn, caused a stroke. I was in intensive care and my parents were warned it was 50/50 whether or not I took a turn for the better or worse.

“I had an operation to release the pressure on my brain and to drain off the excess fluid. My parents were warned to expect me to have some kind of disability from the bleed and stroke but that it was too early to tell what that would be.

“Fast forward to the time when I got back at the RUH for Physio, Pete, one of the Physiotherapists put me on a tilt table, which is basically a table that’s supports you upright as I’d been lying down for so long. He also put me in a large soft wheel chair,a bit like an arm chair on wheels and took me outside, as at this point I’d not been outside for maybe six or seven weeks and he just chatted to me.

“During Physio we worked on enabling me to walk unaided. The stroke affected my eyesight and my left side felt weak and heavy. However, my legs worked, but I just couldn’t balance and I would walk as if I was drunk because my eyesight was damaged. Although I can see, my sight is blurred and out of focus and lacks sharpness as my brain was damaged, meaning it doesn’t correctly read the signals from my eyes, but with therapy I started to learn how to manage and cope.

“We also did some work playing catch with a soft ball as my distance and depth perception was affected. Jenny, the Occupational Therapist also helped and we did some day to day tasks like making a sandwich and making a hot drink. The fact that I can walk and live on my own is, in part thanks to all the work of Pete and Jenny, they both helped me as the Physio part of a recovery is just as important as the medicine side of being ill.

“The quality of my recovery has been in part due to the Physio and Occupational therapy I received at the RUH as well as the small amount of Physio & Occupational therapy from my community hospital after I’d returned home.

“It’s taken me a long time to adapt and come to terms with the changes and I struggled for some time.  The bleed has turned out to be from a gene defect which causes my blood vessels to be weaker and more fragile than normal and also affects the connective tissue between my joints. It can’t be treated and the likelihood is that it’ll happen again across the course of my life, but with regular scans and various different tablets we can hopefully lessen the chances.

“The Physiotherapy and Occupational Therapy I received has certainly helped me to be where I am today and it’s taken some time to get here, but I’m positive about life now and although I need a little help with some things, I live independently, which was very important to me to get back to being able to live on my own.

“I owe a lot to the surgeons, the nurses who cared for me and to the therapists who helped me get where I am today.

“I’d like to thank them all as due to the severity of the bleed I’m extremely lucky to be here and to have made this recovery.  I have even been described by my neurologist as ‘a complete success’.”

Inspired by Kevin’s story? If you’d like make a donation towards the new RNHRD and Therapies Centre, click here or donate through JustGiving.com

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Lucinda’s story – why therapies matter

“My name is Lucinda and I am 35 years old. I developed Complex Regional Pain Syndrome (CRPS) about eight years ago in the lower part of my right leg. The CRPS has since spread to affect all of my right leg, lower back and I am showing signs of CRPS in my right arm.

“Before I developed CRPS I was a keen horse rider, I was lucky enough to own several horses with my sister. Anything to do with horses I was there, show jumping, dressage, cross country, you name I did it! Sadly my world came crashing down one sunny spring day.  This is my CRPS journey:

“I had an operation on my stomach, just simple keyhole surgery, the procedure went well and after a couple of weeks was back at work. I went for my usual walk at lunch time but when I came back my right leg was really hurting. By the time I had got home that night my leg from my knee down had swollen nearly doubling in size and was hot and painful to touch. The next day I went to my GP because I was concerned what was wrong with my leg.

“Immediately i was admitted to hospital for a suspected blood clot. To cut a long story short the doctors could not find out what was wrong with my leg, which by this point was extremely painful and sore to touch. But, the doctors could not find anything wrong with me, so I paid to have an appointment with a private consultant. He examined me and said I have CRPS. This was about nine months after the initial symptoms started. My CRPS has spread over the years, it now effects my lower back, the whole of my right leg and my right arm. This is due to operations and having falls, but I won’t bore you with the details.

“I was referred to the CRPS Team at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath. I didn’t know what to expect as I had lost faith in all the consultants I had seen.  All I wanted was the pain to be taken away and be able to walk properly again.  The team were incredible they explained my condition in detail answered all my questions the support was overwhelming.  It was decided I would stay as an inpatient for two weeks.

“A couple of months later I arrived at the hospital scared and anxious. The nurses were lovely they reassured me and understood that I couldn’t cope with people being too close to my affect leg.  I met other patients with CRPS, we would sit together at meal times and chat about our experiences with CRPS.  For the first time since having CRPS I felt I was not alone, there were other people going through the same as me. I made some wonderful friends who I still keep in contact with now.

“The CRPS team complies of an Occupational Therapist (OT), Physiotherapist, Psychologist and various Specialists.  Each person has played a huge part in my journey of living with CRPS, in particular OT Charlie and Physio Keri.  During my stay at the RNHRD the team taught me how to live with my condition.  The word PACE was drummed into my head.

“Having CRPS made me very anxious to go out and I was scared I would get knocked by people and starred at because of my disability.  Charlie helped me over come my fear giving me useful tips to protect myself.  She told me to walk with the buildings on my painful side, ask Paul to walk that side of me so people would have to pass him not me.  I have even trained my Jack Russell, Hercules to walk on my right hand side so if I am on my own I have some protection there.  I have become so confident in new places that earlier this year I stayed at the hospital I took myself to the gin bar over the road all on my own.  For me this was a huge achievement and a very rewarding one!

“Keri my physiotherapist understood that no matter what I really wanted to try and lead a normal life, as normal as life can be with CRPS.  She taught me to aim for smaller goals rather than huge goals that left me feeling useless because I couldn’t achieve them.  With Keri’s help I now use a hydrotherapy pool every day, which is something that I find a vital part of my rehabilitation.  Keri has taught me various techniques to help me cope with living with CRPS.  I have learnt to pace myself and ask for help. One of the symptoms of CRPS is your brain distorts the way your effected limb looks.  This is a huge battle for me as I still cannot look at my effect leg.  Trying to describe my leg to Keri even now brings me to tears.  I thought I was going crazy when I tried to explain to people how it looked.  Keri assured me this was all part of having CRPS.  When I chatted to other people with CRPS they would say the same.  The team are always there to help me through the lows of having CRPS, I can honestly say I would not have been the person I am today without the team.

“I mentioned earlier that I have a serious love of horses, they are my life.  Riding was no longer an option for me as it was too painful.  I became very depressed and could not face even going to see the horses.  This went on for a couple of months I became more and more depressed and started to think awful thoughts.  My mum said to me why don’t you try and ride side saddle.  I asked the CRPS team what they thought and they said give it a go.  Where I live I am very lucky to have an equestrian centre that specialises in side saddle riding.  I explained about my condition, how I have extreme pain, I can’t work out where my leg is half the time and that I suffer from bad spasms.

“My instructor understood and put me on a safe horse.  Although riding the horse sideways was painful it was not as bad as riding astride (I had a couple of goes in the past but found it impossible).  I felt incredible when I got off the horse I was not so good physically but mentally I felt fantastic.  I had a couple more lessons over the next few weeks’ it gave me something to focus on instead of the pain all the time.  My instructor decided to try my own horse Splash side saddle and low and behold she took to it like a duck to water.  This was four years ago, now Splash and I compete in side saddle classes up and down the country.  We do pretty well.  I came fourth out of 25 places in our first international show and have had many wins in dressage and side saddle classes.  I have been graded by a special physio so that I can compete in para-dressage. I have been given a grade 4 which is the least disabled grade (grades range from 1 being the most disabled to 4 the least disabled). I am currently in the process of being re-graded.

“Medication wise, it was decided that I should have a Spinal Cord Stimulator (SCS) fitted as a last resort to help with my pain levels.  This works in a similar way as a Tens Machine but it is inside your body.  The SCS has helped my pain levels in my right leg.  I still have a lot of pain but by having the SCS I can manage my pain levels better.  I still have all the other symptoms of CRPS (limb distortion, spasms etc.) but with lower pain levels it means I can concentrate more on getting my brain to engage with my right leg.

“Without the help and support of the team at the RNHRD, I would never have achieved any of the above.  I am a strong determined woman, but even strong determined women have low moments and I really have hit those lows.  I feel have got my life back rather than CRPS controlling my life.”

Inspired by Lucinda’s story? If you’d like make a donation towards the new RNHRD and Therapies Centre, visited our website or donate through JustGiving.com

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Sue’s story – why Therapies Matter

“In 2006, I had a fall at Christmas, which resulted in fracturing my wrist, displacing my collar bone and shoulder blade. Soon after the fall, I showed signs of developing Complex Regional Pain Syndrome (CRPS), which is a chronic pain condition which mostly affects one limb, and in my case I was diagnosed with it in my left arm.

“The fall changed my life significantly and I spent nine years grieving for everything I’d lost in that split second. I was a teacher, but I lost my job and haven’t been able to drive since.  My husband become my carer, so I felt I had lost him as my husband and I couldn’t hug or hold my grandchildren as I was in excruciating pain all the time. I also suffered from sleep deprivation and also depression and stopped socialising.

“I couldn’t use my left arm at all and I had it in a sling for three years as having CRPS in my arm meant that it became sensitive and a slight touch, bump or even a change in temperature provoked intense pain. I couldn’t tolerate water on my arm, loud noises and people coming close to me as this would increase my pain levels and covered my arm with a compression glove and wore a splint. I couldn’t look at it or touch it, and I wouldn’t let anyone else look or touch it. I felt like my left arm did not belong to me.

“That’s all the negatives and they were all completely turned around following my inpatient stays at the Royal National Hospital for Rheumatic Diseases (RNHRD) in 2016 and 2017 as I learnt how to control my CRPS rather than let it control me.

“At the RNHRD, I had a full assessment by the specialist team and they helped me set realistic goals and concentrated on physical rehabilitation by providing; physiotherapy, hydrotherapy, occupational therapy, psychological support and gave information on my condition.

“Thanks to the Physiotherapists, I haven’t used a crutch or walking stick since.  I found hydrotherapy very beneficial, it was relaxing and was able to do exercises in water without pain levels being raised. Plus, I got a real buzz from cardio workouts in their gym and in turn this decreased my pain levels and improved my core strength and balance so I rarely stumble or fall.

“I also learnt how to pace myself and be realistic in what I could achieve. I’m now able to talk more freely to family members and be honest about how I feel and the impact CRPS has on my life.

“Having learnt strategies to cope with CRPS and how to use relaxation techniques, my sleep has improved significantly. I keep a diary of three positives things every day and any negatives I write on a piece of paper then screw it up and put in the bin.

“My life has changed so much this year and I have achieved so many things including; kayaking with my husband, attending ballroom and Latin dance sessions – I never thought this would be possible, plus I can run around the garden with my grandchildren. I’m beginning to enjoy being in the kitchen and doing some baking. I can now swim with my grandchildren, go for long walks both on the beach and along coastal paths.  I even enjoy the gym and signed up as a member during my last inpatient stay so I went every day and it felt good!

“I have made the most significant progress this year thanks to the care provided at the RNHRD.  I hope my story highlights the importance of therapy services in helping people like me cope with life changing conditions, that’s why I’m supporting The Forever Friends Appeal’s Therapies Matter Campaign.”

Sue shared her story with BBC Wiltshire, to watch the clip, click here

Inspired by Sue’s story? If you’d like make a donation towards the new RNHRD and Therapies Centre, visited our website or donate through JustGiving.com

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Sophie’s story – why Therapies Matter

“After sustaining sports-related injuries in 2004, requiring intensive physiotherapy, I was in constant, chronic pain, extremely fatigued, and subsequently diagnosed with Fibromyalgia (FM) in 2006.

“I joined the first therapy-led Fibromyalgia Self-management Programme (FSMP) at the RNHRD in 2007, where I learned strategies to manage the pain, fatigue, and cognitive dysfunctions (‘fibro-fog’).

“I was delighted to be invited and become a member of the team to support the programme as the first Rheumatology Expert Patient volunteer in 2008.

“The confidence and support that I received, helped me to consider studying part-time for an Open University degree.  I achieved my lifetime goal, this July 2017, gaining a BSc (Hons) Psychology degree just before my 60th birthday!

Sophie Moss landscape removed name

 

“To say that I was, and still am over-the-moon, is an understatement, proving it is possible to achieve your dreams with the appropriate support.

“The benefit of FSMP being therapy-led, is that it is an educational one, which is based on current research, drawing on the expertise of healthcare professionals. However, it is interactive, requiring patient commitment and involvement, to make the changes necessary to improve their quality of life.

“I owe a lot to this unique programme, and would highly recommend it.”

If you’d like make a donation towards the new RNHRD and Therapies Centre, you can make it via our website or through JustGiving.com

 

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Tom’s story – on why Therapies Matter

“At the start of last year (2016) I was diagnosed with Ewing’s Sarcoma (a type of bone cancer) in my right tibia having suffering from pains in my lower leg. I had six cycles of Chemotherapy and then I had my operation where I had my tibia removed and had a donor bone put in which was hollowed out and my fibula was put inside of the donor bone. I then had a further eight cycles of Chemotherapy at the Bristol Haematology and Oncology Centre on the Teenage and Young Adult Ward. I’m now using crutches to help me get around as my leg isn’t strong enough to walk on yet.

“As you can imagine, it’s been a long road to recovery and it wasn’t until August, that I was referred to the RUH’s Hydrotherapy Department for help with strengthening my leg and getting me up to speed with my recovery. At my first session, I was greeted by Bronwen, who’s one of the physiotherapists. She recognised me from a few years ago as I previously had a back operation at the Circle in Bath and had recovery Physio and Hydrotherapy sessions at the RUH, so it was nice to see a friendly face. She put me at ease straight away and so far I’ve been having sessions in the pool once a fortnight.

“I’m back at work now, but it was a struggle in the beginning as I can’t put any weight on my right leg and being on crutches it’s difficult to move easily and quickly as everyone else. But, since having the therapy sessions in the hydro pool, I’ve felt more independent, and I can get around, so I’m doing more and most importantly I can now pick up and hold my young daughter, put her to bed and do all the other things you want and need to do when you have kids, whereas I couldn’t before.  Hydrotherapy has helped me be more confident and I’m now able to be about 50% weight bearing, so it’s great feeling that I’m getting there.”

RUH Physiotherapist, Bronwen says: “Hydrotherapy is really a form of physiotherapy in water. Using the buoyancy, heat and pressure of the water, enables patients like Tom to walk in water when they are unable to walk on land. This helps reduce pain and swelling, so Tom can strengthen his legs and maintain fitness. It’s been great to see Tom’s progress, so far, he’s doing really well.”

If you’d like make a donation towards the new RNHRD and Therapies Centre, you can make it via our website (click here) or through JustGiving.com

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Vikki’s story – why Therapies Matter

Vikki Knowles explains why the RNHRD and Therapies Centre means so much to her…

” In 2014 following a routine operation I developed severe pain and stiffness in my neck, shoulders and pelvis. This progressed quite rapidly and I became severely incapacitated with my husband having to help me wash, dress and manage everyday activities. I did manage to keep working in a limited capacity but the pain and stiffness was very difficult to manage at work. Getting in and out of my car was especially difficult and as a community specialist nurse this was possibly the worst aspect.

“I was referred to a Rheumatologist who diagnosed me with Polymyalgia Rheumatica (PMR). I was started on oral steroids and told that this would sort out all my problems. However, I wasn’t comfortable with the diagnosis as the symptoms seemed more extensive that those seen with PMR as the pain and stiffness continued to cause problems. I also experienced severe fatigue and interrupted sleep pattern.

“My GP who had been supportive referred me for a second opinion. Dr Chander, the second consultant I saw was extremely thorough and agreed that this did not look like PMR. Following extensive investigations and I was diagnosed with non-radiologic axial spondylitis.

“It was at this point I joined the National Ankylosing Spondylitis Society (NASS) and heard about the Ankylosing Spondylitis (AS) course being run at the Royal National Hospital for Rheumatic Diseases (RNHRD).

“In April 2017, I started the two week AS course. It was a revelation, the staff are amazing. I was lucky to be with a great group and we have forged a really close supportive network, which has helped keep us all motivated. Following the course I have gained pretty much full mobility and can now do all the things I was unable to do prior to attending including getting in and out of my car.

“The educational component of the AS course is also of great value as even though I am a nurse I learned so much more about living with the condition. It equips you with the tools to maintain a healthy lifestyle and keep you moving but it depends on the individual continuing to practice what they have learnt. I have started yoga and Tai Chi as recommended and do my exercises regularly so that on my six month post course review my scores had continued to improve. I would never have achieved this had I not been lucky enough to have access to the group as there is no local AS services where I live.

“Attending the AS course has truly changed my life and I feel so grateful to have had such excellent support from the wonderful staff at the RNHRD.”

If you’d like make a donation towards the new RNHRD and Therapies Centre, you can make it via our website (click here) or through JustGiving.com

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Ed Jackson explains why Therapies Matter

Earlier this year, Ed Jackson joined The Forever Friends Appeal as an ambassador for the new RNHRD and Therapies Centre fundraising campaign. We’re delighted to have him on-board, helping us increase awareness and raise funds for the much-needed new Centre that will bring together a number of services including rheumatology, therapies and a number of pain management services under one roof, in a new purpose-built facility at the Royal United Hospitals, (RUH) Bath.

The former Bath Rugby back row player had a freak accident at a family barbeque in April last year. He dived into the shallow end of a swimming pool thinking it was the deep end, and was left with a broken neck. At 28 years old, he was told at the time that he may not walk again.

But, after a gruelling recovery and rehabilitation at three different hospitals, including the Royal United Hospitals Bath, he’s making incredible progress.

Ed Jackson's road to recoveryEd said:

“As a spinal injury patient, I have learned just how important the environment is to wellbeing and recovery, having spent so much time lying down and staring at the ceiling, and unable to leave the hospital setting. Therapeutic environments, calming surroundings and mental stimulation are hugely beneficial. Staff at the RUH do an amazing job, and I believe that they should be supported by working in the right environments to help them to deliver the best level of care too.

“We need the public’s support to help raise the much needed funds towards an innovative and therapeutic new centre. Thanks to the Brownsword Match Funding Challenge, every pound you donate will be matched by the Brownsword Charitable Foundation, doubling all your support. If you can support the campaign, please click here. ”

 

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Nic’s Story – Why Therapies Matter

Nic Noble explains why the RNHRD and Therapies Centre will mean so much to her…

“Nearly 18 years ago I had my beautiful daughter, Alice. My husband and I already had two boys; Jake, nine, and Lewis, seven. Little did I know or expect that three weeks later I would be in the Royal United Hospital with a deep vein thrombosis.

“The consultant gave me the medication I had to inject every morning and the thrombosis would be disbursed. Unfortunately as this was happening, the medication was slowly eating away my vertebrae. It was becoming increasingly difficult to pick up Alice, look after the boys, look after our home, and our business, as we are self-employed.

“By April, during the Easter holidays, I collapsed and was taken into the RUH. I was able to keep Alice with me in a side ward with the help of my mum, sister and mother-in-law. An MRI scan unveiled six of my vertebrae had collapsed and I was diagnosed with osteoporosis. I was referred to Dr Bhalla at the Royal National Hospital for Rheumatic Diseases (RNHRD, known locally as ‘The Min’). The staff at the RNHRD were fantastic, Dr Bhalla, the physios and the hydro therapists gave me the support I needed for my recovery.

“The following year my sister was diagnosed with breast cancer; after chemo and having both her breasts removed, she decided raising money would be the way for us to go! So she trained for the Bath Half and we trained to walk marathons. She did a wing walk and I shaved her hair. Then the cancer was found in her lungs and she explained to me it was my turn to run!

“We had also approached The Forever Friends Appeal about a walk we wanted to do around the hospital’s catchment area and Tim said yes. Our first walk was in 2006, raising £40,000. In 2007, I trained and completed the Bath Half and the London Marathon with Nessa’s relentless encouragement.

Nic and Ness resized

“Ness was very poorly around the time of the second walk but asked me to promise to carry on raising money for a new Cancer Centre. Sadly, in the November, Ness passed away, but her legacy lives on. The walks to date have raised over £300,000. Without the therapy at the RNHRD, I would never have been able to keep my last promise to Ness.

“The RNHRD and Therapies Centre will help so many more patients like me. At a time when you are frightened, in pain and need fantastic support, this new facility will provide a positive and nurturing environment.

“This is a wonderful project to provide bigger and better facilities that will help so many people in our community.”

Inspired by Nic’s story? If you would like make a donation towards the new RNHRD and Therapies Centre, you can make it via our website (click here) or through JustGiving.com

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