I’m Susan, a 67-year-old woman living in the West of England. I have been living with facial palsy since August 2024.
I’m a keen golfer and hiker and a member of a golf club. 18 months ago, I woke up and realised, to my confusion, I couldn’t close my eyes. Ten minutes later I discovered I couldn’t drink my coffee, because my mouth seemed to have turned to rubber. In shock, I realised something was badly wrong and went to A&E, where they ruled out a stroke and diagnosed Bell’s palsy. I was told that almost everyone recovers and it was just a question of time.
The initial impact was huge. Food had to be soft and cut up small, because I couldn’t open my mouth or chew properly. I dribbled, so used a bib while drinking. My speech was very unclear; I couldn’t pronounce P’s or B’s.
Because of the physical difficulties, eating in public was unthinkable for many months. However, belonging to the golf club and meeting my friends every Wednesday has been very good for me. It helped me overcome the initial instinct to avoid people. The first visit was difficult; people were visibly shocked. They were encouraging about recovery. They have cheered me on with every slight improvement.
An advisor from Facial Palsy UK suggested that I ask for a referral to one of the specialist F acial Palsy centres. The GP agreed and referred me to a unit in the Midlands. However, like many medical professionals I met during this illness, he thought I was bound to recover, so sent the referral as routine. This resulted in months of delay. It would be helpful if doctors had a greater understanding of the impact of facial palsy.
After a long wait, I started seeing a facial physiotherapist, who diagnosed synkinesis and recommended Botox® injections. After the first Botox® treatment I was able to chew effectively. It was a huge relief that something worked.
These two treatments have been transformative, with my facial symmetry scores improving from 47 to over 70. Small improvements are still being made.
This illness has been life-changing. Whenever I look back at past photographs, where I look happy and am smiling normally, I feel a pang for what’s been lost. I’ve picked up my old life, but I don’t think I’ll ever feel that this face is me.
The lack of medical support at the beginning of this illness left me feeling lost. I hope greater awareness will allow future sufferers of facial palsy to be given swift access to expert help as soon as signs of incomplete recovery appear.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.