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I am Sally and here is My Story
At 42 I am blessed to have lived an incredible life to date; travelling the world, learning new cultures, making new friendships and experimenting in adventurous activities. I have run marathons and ultramarathons, scaled some of the most challenging peaks, hiked, swam and sailed wherever and whenever I could.
So that’s brings me here, my GoFundMe page. In January 2023 my life changed for the worst and changed forever. I herniated my lumber spine during a CrossFit session and was unable to walk properly. In late August I started to experienced foot drop, then late September my index fingers had curled over making it extremely difficult to type. This was initially diagnosed as “trigger finger”, a common condition for women my age in typist-based roles. Physio treatment commenced for this along with numerous MRI scans and a lumber puncture in late 2023.
In early 2024 I undertook a repeat of brain and cervical spine MRI to determine why I still had an unusual gait along with steroid injection for my “trigger finger”. By March more of my fingers had curled, I was experiencing muscle wastage in my upper body and extreme difficulty with dexterity; no longer able to tie my hair, use cutlery, put socks on, open bottle caps, jars and cans. Along with my gait becoming increasingly slower and I also found myself frequently falling (at least once a week) due to my difficulty with balance, so thereafter I became reliant on using a walking stick.
On 15 April 24, following all normal MRIs and test results along with observing my symptoms the neurologist concluded that I had Motor Neuron Disease (MND).
What this means for me
MND is a terminal disease with no chance of recovery. Due to the aggressive complexity of this condition, I will never run along the beach again, watch the beautiful sun set from the peak of a mountain or swim in the ocean. I will become fully wheelchair dependant, it is highly likely I will lose my ability to verbally communicate, unable to write or operate a computer, my breathing and swallowing will be affected, and I will need 24 hour full time care.
The help that I need
As MND continues to take away most of my life enjoyments, all I have left is the home that I love. I want to continue to live there as long as possible, for me to continue to enjoy my home, I need to make extensive alterations to the fabric of the building.
Doorways will have to be widened for wheelchair access, the existing downstairs toilet will require an extension to create a disabled accessible wet room and toilet facilities.
In the near future, I will be unable to access my bedroom, my life will be solely downstairs. Luckily, I have a conservatory that lends itself to being adapted to become my new downstairs bedroom, easily accessible to the garden. To enable me to use my conservatory in this way, it will need completely removing and rebuilding, to re-purpose the space as a functional disabled friendly bed space, and installing bi-folding doors which will provide me with access to my beautiful garden that I have worked so hard to create. It holds many happy memories of good times spent with friends and family, which when I can no longer travel overseas, I want to spend my summer months both reflecting and creating memories here.
I know this will seem like a lot of work, and you might well be thinking, “why not simply put in a stairlift, that would be less costly and enable you to access your whole home”, I have investigated this in detail also and sadly, a stairlift is simply not an option. The occupational therapists have highlighted to me that I will lose all ability to hold my posture and move my body, I would be an awkward, dead weight to lift, such action would be unsafe for both me and the person lifting me.
I did consider moving house, which instantly made me sad, I love my home but ever the pragmatist I knew I must consider all options. I found that not only would this be far too challenging in my condition, but it would also be more costly than adapting my existing home. I have lots of happy memories here and I know that it will become increasingly important to me to remain in this space as my health becomes ever more challenging.
Why I need your help
The cost of these major reconfiguration works are considerable in the excess of £50,000. I have already sought the help of local government and charity financial support, however the amount they are able to provide is minimal, the small amount of savings I have will soon be depleted by ongoing, escalating cost of living including future care costs.
How you can help support me
So, I am desperately appealing for your financial support towards my home adaptations and future mobility needs. l will hugely appreciate and value any donation that you can give, whatever the amount.
Alternatively, you might decide to set up a sponsored event to help raise funds for my cause. Everything will help.
I will update this page on an ongoing basis with links to any events that are created as fund raisers, so if you are not financially able to donate money, please consider donating time to join and/or support an existing event.
For all of you reading this today, you have my heartfelt thanks. I would love it if you would share my story and this page far and wide, MND is a cruel disease and if all that this page does is raise awareness of it, I will be happy.
Finally if you feel inspired by my story, I ask that you consider how you might support me in continuing to live my life, my way.
What Is MND?
Motor Neurone Disease (MND) is an uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time.
You have nerves in your brain and spinal cord that control how your muscles work. These are called motor neurones. MND is a disease that affects the motor neurones. With MND, motor neurones gradually stop telling your muscles how to move. When muscles no longer move, they become weak, which can also lead to stiffness and loss of muscle mass (wasting). Which can affect how you walk, talk, eat, drink and breathe. Some people also get changes to their thinking and behaviour, but the disease affects everyone differently.
Not all symptoms will affect everyone, or in the same order. Symptoms also progress at varying speeds, which makes the course of the disease difficult to predict.
MND is life-shortening and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life.
The above description is quoted from the following references for further reading:
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Sally Scales
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England