Hi all, thank you for taking the time to read this page. I want to tell you a little bit about what has brought me to write this and how you may be able to help. Late last year, Kathryn received some devastating and tragic news that turned her life upside down.

At just over 50 years old, Kathryn was diagnosed with Motor neuron disease (MND). MND is an uncommon condition that is a progressive degeneration of the nerve cells that control our muscles. There is no cure for MND but there are treatments to help reduce the impact it has on daily life.

The Diagnosis

The symptoms began during spring last year, with Kathryn noticing she was beginning to slur her words. A quick visit to her GP started the ball rolling for scans, mainly looking for signs of a stroke or brain tumour, the MRI came back clear, and Kathryn was referred to a neurological specialist.

Over the next few months, Kathryn was sent for more brain and spine MRIs, nerve conduction tests (electromyography), a lumbar puncture, and multiple blood tests. After being poked, prodded, and tested for every condition under the sun. Alarmingly, all the tests came back clear. MND is a rare disease that usually affects men between 60 and 70 and can only be diagnosed by eliminating all other possibilities.

In October 2022, Kathryn was finally diagnosed with FND (functional neurological disorder) which is recoverable and is thought to come from childhood trauma. Kathryn requested a second opinion just to be on the safe side and this is when she got the devastating diagnosis in late November 2022.

Treatment

There is no cure for MND.

Treating MND is about relieving symptoms, improving the quality of life, and, hopefully, slowing the progression of the disease. There is no treatment to reverse the damage already done to the neurons.

Currently, Riluzole is the only drug to be licensed for the treatment of MND in the UK and approved for use by the NHS.

It is not a cure for MND but is the only medicine available in the UK to show a modest impact on survival for people with MND, where suitable. Glutamate (a chemical messenger in the central nervous system) can cause nerve damage if produced in excess. Riluzole is thought to work by reducing glutamate activity.

What Now?

After working for Jacobs and previous companies for Jacobs for 6 years Kathryn has decided to take some time off work and enjoy some well-deserved quality time. Over the 6 Kathryn with Jacobs, Kathryn has worked on multiple projects across multiple areas of T&CI, covering many clients. Kathryn has also helped mentor other planners at the start of their careers.

Kathryn is taking everything day by day and hopes to continue spending as much time with Ernie and her friends and family.

Every aspect of Kathryn’s life has now changed dramatically and day-to-day tasks are becoming more and more difficult.

Being so young, with a disease that affects everyone so differently, Kathryn is unsure what her future looks like and must learn to live a new normal each day.

Soon Kathryn will no longer be able to do simple everyday tasks such as showering and dressing. She will not be able to eat without difficulty. She will have to give up driving and use a walker to get around the house and a wheelchair when in crowds and travelling long distances. This will be devastating for Kathryn. Kathryn recently bought her dog Ernie who she’s longed for, for such a long time and nothing gives her more pleasure than taking him out for long walks, which is getting more and more difficult and the thought of not seeing Ernie into his adult years is another devastating blow.

The reason for my plea, Kathryn had recently moved house before these investigations started and the house needed some much-needed love and repair. Kathryn lives alone with Ernie and is now not able to start these renovations, however, the house not only needs some TLC but needs adapting to enable Kathryn to remain at home independently for as long as possible. Which, given Kathryn’s strong and independent nature is very important to her. there are very few grants available to help so your kind donations will make a world of difference. Being able to help and support Kathryn in this way, will hopefully remove any additional stress around finances and enable Kathryn to fight for as long as she possibly can!

Thank you for taking the time to read this message. Your help will make a world of difference and is so greatly appreciated!

Thanks

Rachel