Louise Jordan, 61, a GP, was diagnosed with MND in 2021. She is hoping to raise awareness, and funds, for the new Rob Burrow Centre for MND.

I had Covid in March 2020 and noticed a few months later that my speech was slurring slightly. Over the following months, it became progressively worse.

My colleagues attributed my slurring to me being tired and overworked. As a full-time GP coping with the pandemic global emergency and working virtually 24/7, this seemed reasonable.

After approaching a neurologist, investigations began.

It wasn’t until October 2021 that Primary lateral sclerosis (PLS), a rare form of MND, was diagnosed.

By now, work was a real struggle. At best, I sounded drunk and at worst, inarticulate. I shared my diagnosis with my work colleagues and of course, my partner Rob.

There was an unrelenting work load at the practice as a colleague had left burnt out, and I didn’t want to leave it in crisis. We therefore agreed I’d do virtual consultations and some minor ops – and the practice nurses would be my voice.

We eventually successfully filled the posts, ensuring that good succession planning was in place. I let family and friends know of my diagnosis and took retirement in May 2022.

I am now unable to speak at all.

In mid-2021, I banked my voice with Speakunique and that has been an aid. But in truth most people find it easier to read what I write.

My swallowing is hampered and I can only manage a fairly soft diet and eat very slowly. Rob, my partner, is really inventive in his cooking to keep meals nutritious and easy for me to eat. I tend to avoid going out, but if I do, I stick to small starters. I have a right facial palsy making it very hard to smile symmetrically which, combined with dribbling due to my excess secretions, is not a good look!  At the moment I am aware of some very subtle changes in my right hand affecting my writing and grip. This means I struggle with the piano; I have already lost the ability to play the flute (as well as the ability to kiss properly) due to my facial weakness.

My sleep is disturbed as I wake often when my cheeks collapse in my mouth and I bite and ulcerate them. My soft palate also drops, so I sometimes choke or cannot catch my breath at night which is frightening for Rob.

Each day, a new problem arises that needs circumnavigating. How do I get into a building that has an intercom? How do you ask for a hot drink in Costco? Or speak to someone unexpected knocking at the door. It is endless. I have printed some cards to explain the situation. People assume you are also deaf and stupid; they feel the need to over articulate or write something down. As they are only trying to be kind, it is difficult to point out that they are humiliating me.

Frustration and humiliation are my biggest emotions - even more than my sadness, which is pretty overwhelming at times.

My partner is amazing but very distressed by my deterioration.  My two sons have already had to go through losing their father with a brain tumour back in 2011 after a very prolonged illness. This is so very unfair on them. My mother-in-law and my parents put on an upbeat brave face for me; we all know deep down the poor prognosis this condition carries. Rob's four sons are incredibly patient and supportive. Two of them are training for the Rob Burrow Leeds Marathon in May 2023.

Speaking, consulting, reflecting, explaining and nattering were my life's work.

I try to be a glass half-full person, so every problem that arises I deal with humour and then seek a solution. I have found many ways of coping with my anarthria, and I would really like to share the solutions I have found to help and to raise awareness of problems around being unable to speak. My career has prioritised end-of-life care. As a GP, I have been absolutely committed to my patients and have been on many journeys with those with MND. I have always been motivated to raise awareness, and ensure as many solutions as possible are found, to improve their quality of life. I am now on the other side of the coin.

My motivation is for my family not to lose another member, and to do what I can to support this amazing cause.

MND is the worst illness to have; my medical colleagues join me in feeling it is the worst to be diagnosed with. The new Rob Burrow Centre for MND would be a huge source of hope, comfort and positivity. 

Photo credit: Lorne Campbell, Guzelian Media 

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