World Mental Health Day 2019

To mark World Mental Health Day, we are pleased to share Deafblind UK member Mark’s experiences of living with Usher Syndrome and the impact of deafblindness on his mental health.

Mark’s story

“I have Usher Syndrome Type 3A, I am now severely sight impaired with no useful eyesight. I also have moderate to severe hearing loss and use 2 powerful hearing aids backed up with a wired assisted listening device where appropriate.

Slowly losing my eyesight and hearing has made me extremely depressed and anxious at key moments of my life. No longer being able to drive my car and ride my bicycle and then again when I could no longer see large print on a screen or recognise people’s faces.

When I was 16 years old, my parents started noticing that I could not see in the dark and was having some difficulty with hearing, I was having to sit at the front of the class at school. They were desperate to help me and made an appointment for me to see a top consultant at a Harley Street clinic, after I had been examined by a local optician who was concerned about my retina. At that age, for the consultant to tell me face to face in front of my parents that I had Usher Syndrome and that I would go blind and deaf in about 30 years time was rather like someone hitting me with a hammer and pushing me off the rails. I had also just been diagnosed with Retinitis Pigmentosa, after tests at Moorfields Eye Hospital. This affected the rest of my education and social life through adolescence and into early adulthood. My mother, who soon noticed a significant deterioration in my mental health, took me aside and said in her words of wisdom that I “would need to somehow find inner contentment to be able to cope with all this”. She was absolutely right.

When I was eventually referred to an NHS psychiatrist, after having to take early retirement from my work, the psychiatrist eventually decided that not only was I depressed and anxious but needed to be prescribed anti-psychotic medication as well. The psychiatrist said to me that ‘this medication will make you feel relaxed and you do not need to be psychotic to take anti-psychotic medication’. The psychiatrist then said that ‘naturally all patients who are becoming blind and deaf should at least be on anti-depressants anyway’ which I found quite disturbing and shocking.

My further research revealed the side effects of the anti-psychotic medication would result in significant weight gain, dizzy spells and needing liver tests every 6 months. The psychiatrist made no attempt to refer me to the new local NHS drug services for a controlled reduction drug programme to reduce and come off the sleeping pills I was prescribed.

After another crisis I was eventually referred to, and am now being 100% supported by, the NHS drug services. I am receiving support from a consultant psychiatrist, clinical psychologist and community psychiatric nurse and making steady progress in coming off the highly addictive sleeping pills. I cannot tolerate their side effects in the day, which include irritability, impatience, a short temper and feeling miserable. I certainly do not want or need anti-psychotic medication either.”

How I have managed to cope with my situation

“Usher Syndrome is not well understood by the medical profession, but change also needs to begin from within ​as well as receiving ​support from the outside. I now practice Transcendental Meditation twice a day. I also do Tai Chi exercises regularly, having learned all the postures over a ten year period. I have now returned to swimming again at a local pool, joining a special group for disabled people with private access to the training pool. I immediately noticed that there is hardly any chlorine in the water at this pool so my eyes do not sting or become bloodshot. I need to take my hearing aids out and put my earplugs in to protect my eardrums before I swim, and I always have a sighted volunteer to guide me from the changing rooms to the pool using my red and white guide cane. Just doing some Tai Chi or gentle exercise at the side of the pool and then swimming or floating on the surface makes me feel great again. It is also very good for helping me keep fit. I was even presented with a note from my GP to say that I was well enough to continue swimming, which I now do on a weekly basis.

I am constantly having to make positive adjustments to my lifestyle to help me cope and manage with Usher Syndrome as I grow older. I have given up alcohol as the benefits of Transcendental Meditation far outweigh the need for me to drink to be relaxed and happy.”