Gordon's story

My name is Gordon, and I call Gloucester my home. Standing tall at 6’5”, I’m 63 years young, happily married to Debbie, and proud to be a father of two adult children with the added joy of five grandchildren. My journey in the workforce began at the age of 16, and it took me on various paths until June 2020 when I had to step back due to health reasons.

Starting off as a Forest worker in Gloucestershire, I pursued further education at Forestry College to become a qualified Forester/Forest Manager. This led me to roles like Assistant Head Forester in Derbyshire and later, as Head Forester for a government department in Norfolk. Along the way, I also ventured into running my own retail ironmongers and took on positions like Transport Manager and Utility Arboricultural Surveyor.

I’ve always been active and outdoorsy, walking miles every day in all kinds of weather and terrain. When I’m not working, I cherish time with friends and family, indulge in my interests in Art and History, and enjoy listening to talking CDs and downloads. My wife and I also make it a priority to support my 85-year-old mother, who lives just 10 miles away.

Life has thrown its curveballs, but I strive to maintain a positive outlook and remain grateful for the varied experiences and the unwavering support of my wife, despite my health issues.

 

History of my Brain and Spine injury

In March 2018, I fell ill with a virus, leading to multiple emergency visits to the hospital due to breathing and other issues. Unfortunately, I encountered another virus in February 2019. These illnesses took a toll on my once active and healthy body, leaving me with a range of health problems and their associated limitations and symptoms.

In September 2021, a new problem arose: severe back pain. Despite consulting my GP and undergoing examination at the Musculoskeletal Department, I was initially told it was just a muscle issue. However, my condition worsened, with severe back pain, vomiting, and continence issues, eventually leading to another hospital admission. It was then discovered that I had a severe urinary tract infection (UTI), which required antibiotics to control. Despite my wife’s and my suggestion that I might have Cauda Equina syndrome, our concerns were dismissed without further investigation.

In December 2021, I was referred to Hospital, where a Professor diagnosed me with Functional Neurological Disorder (FND). Unfortunately, there was a lack of care pathway or support available for FND.

My symptoms persisted, and I continued to experience increasing pain, sciatica, numbness, and spasms in various areas. Eventually, I underwent an MRI scan which revealed severe compression of my spinal cord and nerve bundles due to a severely herniated disc in my lumbar spine. Emergency decompression surgery was necessary, followed by another operation due to complications.

My trust in my surgeon remains unwavering as we navigate through further challenges. I’ve been informed that my spine has suffered significant wear and tear from my years of physical labour, with additional herniated discs in my neck and lumbar region. Despite undergoing nerve blocks in May 2023, I experienced a heart attack shortly after, requiring the fitting of a stent. Now, I await further surgery on my cervical and lumbar spine, although the heart attack has delayed this procedure.

 

Life changes

My life has been completely transformed, as I now endure constant pain every hour of every day, all year round. My medical journey has led to diagnoses of several conditions including FND with Functional Mobility Disorder, Functional Cognitive Disorder (resulting in memory issues), Peripheral Neuropathy, Dystonia, Arthritis of the spine, Spinal Stenosis, Cervical Stenosis, Myelopathy, Radiculopathy, Continence issues, and frequent falls.

Despite trying various medications, they’ve had little to no effect on managing my pain and have, unfortunately, exacerbated some of my other symptoms. I underwent oxygen therapy, which provided some relief for my breathing. I’ve also explored deep tissue massage, the Alexander Technique, and even chair yoga in search of alleviating my discomfort. Daily meditation has become a crucial coping mechanism for me, offering some relief amidst the challenges.

Financial constraints severely limit our ability to pursue further treatments or therapies, as our funds are primarily allocated to meeting everyday expenses. Like many others, we navigate each day as it comes, striving to make the best of our circumstances.

 

Managing my Neurological / Spinal condition

Nowadays, I rely on crutches, a walker, or my second-hand power chair to move around due to my mobility issues, escalating spasms, and severe fatigue. The pacing and other techniques I learned at Hospital offer some relief, albeit limited.

The abrupt end to my career dealt a heavy blow, shattering our financial stability. While we receive PIP, we’re not eligible for Universal Credit, leaving us without Council Tax support. I deeply miss the camaraderie of my colleagues and the independence I once had, despite my ongoing health battles.

There’s a constant weight on my shoulders, feeling like a burden to my wife, who is my dedicated full-time carer, despite facing her own health challenges. I’m now completely reliant on her support and assistance every minute of every day, 24/7, 365 days a year, trapped in a cycle of isolation.

 

Brain and Spine Foundation support

The Brain and Spine Foundation have truly been a lifeline for me. Through their weekly Zoom meetings and Creative Art sessions, I’ve found invaluable support. Connecting with others who share similar symptoms has been incredibly reassuring and supportive.

I can’t emphasise enough how grateful I am to those who make these meetings possible. Their kindness, support, and dedication are priceless to me, and I hold them in high regard. Recently, I’ve been fortunate enough to become an Ambassador for the Brain and Spine Foundation.

To me, the Brain and Spine Foundation is more than just a support network; it’s a safe place where I can seek help and support at any level.

 

Friends and Family

Regularly, I hear from family and friends, “You look really well,” or “Are you getting better?” It’s disheartening because it feels like they don’t understand the reality of my health challenges. I wish they could walk in my shoes for just one week to truly grasp the impact these conditions have on my daily life and activities. Their comments and treatment can be frustrating, and I long for them to listen to my experiences and acknowledge the ongoing symptoms.

All I ask is to be treated by my family with kindness and support, just like anyone else.

 

Advice for someone dealing with health issues

I would advise someone newly diagnosed with a health condition, firstly ‘to be kind to yourself’, secondly pace yourself as everyone’s health issues is affect us all in different ways, thirdly look to other sufferers and support groups like the Brain and Spine Foundation to help you, they are more in touch with your condition, they can bring invaluable experience and support to help you on your new journey in life. I found that resilience, persistence and bloody mindedness is required to get an accurate diagnosis, concise, consistent, caring and compassionate (The 4C’s) health care for which we all need. Just be true to yourself.

For anyone newly diagnosed with a health condition, I would offer this advice:

Firstly, remember to be kind to yourself. It’s essential to prioritise self-care and give yourself the compassion you deserve.

Secondly, understand that everyone’s health journey is unique, so pace yourself accordingly. Take things one step at a time and listen to your body’s needs.

Thirdly, seek out support from fellow sufferers and support groups like the Brain and Spine Foundation. They offer invaluable insights and understanding specific to your condition, providing essential support as you navigate this new chapter of your life.

I’ve learned that resilience, persistence, and a bit of stubbornness are often necessary to obtain an accurate diagnosis and receive the quality healthcare we all deserve. Concise, consistent, caring, and compassionate (The 4C’s) from healthcare providers are crucial.

Above all, stay true to yourself and your needs as you navigate this journey.

 

Inspiration

I don’t have one specific person who has inspired me. Instead, it’s the collective strength and resilience of all the ordinary individuals facing their Brain and Spinal conditions that truly inspire me. Witnessing how these conditions impact their daily lives humbles me and puts my own ongoing health challenges into perspective.

I’m incredibly grateful to the members of the Brain and Spine Foundation Peer support group for their unwavering support during my times of need. Their unconditional empathy and encouragement have lifted my spirits, even though they may not realise the profound positive impact they’ve had on my health and well-being.

A heartfelt thank you to the Brain and Spine Foundation, its members, and all those who lend their support.

Very best wishes,

Gordon