Twenty years of living with brain injury

Over twenty years ago, Philip Fairclough fell fifteen feet from a ladder onto a concrete patio, causing massive trauma to his head and severe brain injury. Eight years later his book, Living with Brain Injury, was published by JKP. Today, in support of Action for Brain Injury Week, Philip shares with us the progress he has made since writing the book, as well as the lessons he’s learned along the way which are sure to help anyone who has suffered head injury or cares about someone with a head injury. 

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Cover image for ‘Living with Brain Injury’

People often say, ‘Such and such crosses the divide of culture, status, sex, nationality and even religion.’ It wasn’t ’til my book, Living With Brain Injury was published by Jessica Kingsley in 2002 that I realised how brain injury crosses these divides and more – and this was despite my having previously given presentations before groups of litigators dealing with compensation for head injuries, social workers, care givers and hospital staff. It was further brought home to me by the number and types of reviews I read in magazines published here and in the States as well as the letters I have received from carers and sufferers alike.

Things I have learned which have helped me cope in every day life
In the early days, when I saw how my condition was affecting my family, I honestly felt I’d have been better dying. However, since then I’ve come to realise there is always someone far worse off than me and I tell people, now, for me every day is a bonus. Something else I’ve learned, which came as quite a shock, but helped me to try and see beyond the obvious, was understanding why the wives of some of my fellow sufferers, at the rehab unit, left them after their head injury. I remember saying to Pauline, how terrible that they should be abandoned at a most critical time in their life. Her comments on that were quite sobering. She told me that if it wasn’t for the fact that she loved me and  took her vows and our faith seriously, she might have done the same! We’ve now been married for forty two years with still some to go!

One final note on the matter of what I have learned. The OT’s at the rehab unit, from day one, stressed the importance of setting realistic goals and, having achieved them, setting some more. Though this was a strategy I had been employing for years, both as one of Jehovah’s Witnesses and as a salesman, it was an invaluable tool in helping me keep focused on the positive aspects of life and putting the negatives on one side.

Things I wish I’d known before my accident
I wish I’d realised just how dangerous window cleaning was and had taken to heart the warning I was being given by the excessive costs of insurance! Yet for all that, whilst I wouldn’t want to relive the past twenty years nor for my family to go through it all again, I have learned so much that I wouldn’t have otherwise, contributing to ways in which I have changed since before the accident. For example; though it seems that my memories of what I was really like before the accident are flawed, one thing I do remember is that I had very little empathy for people with illnesses. Though my wife had suffered with health problems for many years and I was very understanding of her, since I’d had few serious health issues since childhood, I had no understanding of how sick people felt or were treated or what they needed from others. However, that changed fairly quickly when I realised how understanding and helpful people were to me. And not just friends, family, work mates and neighbors, but even total strangers. Since, I suppose, I expected them to understand me and make allowances for me, I was forced to change my attitude towards those with health issues, regardless of how serious or trivial they appeared to be.

Philip at home after the accident, before the move to Rosehill Rehabilitation Unit. The shape of the skull was caused by the removal of a part of the bone to relieve pressure on the brain.

Philip at home after the accident, before the move to Rosehill Rehabilitation Unit. The shape of the skull was caused by the removal of a part of the bone to relieve pressure on the brain.

Changes in my health
Whereas stamina was a real problem in the beginning, my fatigue requiring me to sleep most afternoons, for the past few years I have not needed to sleep. In fact, I am awake most mornings between five and six and I often work in the garden for two or three hours without ill effect.

Since I have had no seizures for the past fifteen years, meaning that under medical supervision I have been able to cease using anticonvulsants, apart from the freedom I have gained, many of the side effects common to such medication have also ceased or been minimised. This, I feel, has made me easier to live with. You’d have to check with my wife but I think she’d agree! This has also meant I have been driving again for several years and am just in the process of becoming the policy holder for the car insurance, something I’ve not done for over twenty years. I am also no longer classed as disabled which has helped me gain back much of my self worth. I have been working part time for the past fifteen years, back in my old job of selling which is another plus. The one other thing that has changed is that my enforced retirement has allowed me more time to write. Not only have I written my book, I have also written, and had published, sixteen newspaper and magazine articles in the UK and in Malta. I have written five novels, two of which are, at present, doing the rounds with agents, a full length children’s story and I’m currently writing two spin offs from one of my novels. I am determined to get something, in fiction, published! For two reasons: 1) I want to know if people find my fiction worth reading as my non fiction and 2) Despite only having eighteen months to go before officially retiring, I would like to regain self worth from being able to once again earn money to provide for my family. Watch this space!!

Things which haven’t changed!
I still have problems, at times, grasping things which Pauline or others tell me, requiring them to explain them again, sometimes more than once. I still have problems with time telling and numeracy and I also misread situations or misperceive what I think are people’s responses to me. All these things cause me irritation,  mostly at myself when I fail to understand things, which I have difficulty hiding.

Final thoughts
I wouldn’t want anyone to get the idea that things are a push over, that head injury is something and nothing or that I’m back to normal! I know I was very fortunate compared with many. I was very fortunate in the speed at which I was dealt with and the expertise available to me that day. I am fortunate in having a family like I do and the kind of friends which we have. Much of what I have is based on determination and a positive attitude and this stems from my unswerving faith in God whom I’m convinced had a hand in my life that day since there were too many coincidences for them to be coincidences! Something else which has contributed to my recovery is that, as one of Jehovah’s Witnesses, I am active in our door to door ministry and regular bible study, all of which has not only kept me physically strong but mentally too, making my neural pathways knit that much faster!
Whether to a sufferer or a carer, my final note on this matter is as follows and you’ll find it in the last sentence in my book:

Remember: Where there is life there is hope and there is DEFINITELY life after brain injury.

You can find out more about the book, read reviews or order your copy here

Self-Help for Adults on the Autism Spectrum

In another blog post for Mental Health Awareness Week award winning JKP author Dr. Lee A. Wilkinson discusses some of the challenges facing adults on the autism spectrum—

The dramatic increase in the prevalence of autism spectrum conditions among children and adolescents and the correspondingly large number of youth transitioning into adulthood has created an urgent need to address the problems faced by many adults on the autism spectrum. Nearly a half million youth with autism will enter adulthood over the next decade and most will continue to require some level of support. In addition, there is a large and diverse group of adults whose autistic traits were not identified in childhood and have not received the appropriate interventions and services. Although autism symptoms may improve with age, co-occurring mental health issues may worsen in adolescence or adulthood. As a result, there are a significant number of adults on the spectrum who are now seeking help to deal with feelings of social isolation, interpersonal difficulties, anxiety, depressed mood, and coping problems. Unfortunately, mental health problems such as anxiety and depression and even the diagnosis of an autism spectrum condition itself often go unrecognized. Although the rate of co-occurring mental health issues for adults on the spectrum is high, accessing services to address these symptoms is frequently difficult and the extent of the problem will only increase as more and more youth transition to adulthood.

Evidence is beginning to emerge for interventions addressing the mental health needs of this growing and underserved group of adults, including cognitive-behavioral therapy (CBT). CBT has direct applicability to adults on the autism spectrum who often have difficulty understanding, managing, and expressing emotions. It has been shown to be effective in changing the way a person thinks about and responds to feelings such as anxiety and depression. With CBT, the individual learns skills to modify thoughts and beliefs through a variety of strategies which improve interaction with others in helpful and appropriate ways, thereby promoting self-regulation and mental health. It is a goal oriented approach and primarily emphasizes here-and-now problems, regardless of one’s past history, traits, or diagnosis. CBT also provides a more structured approach than other types of psychotherapy, relies less on insight and judgment than other models, and focuses on practical problem-solving. Moreover, because individuals learn self-help in treatment they are often able to maintain their improvement after therapy has been completed. Evidence-based CBT holds considerable promise as an effective intervention for improving the quality of life and psychological well-being of adults on the autism spectrum.

Despite the availability of effective psychological treatments for anxiety and depression, a substantial number of adults on the autism spectrum do not seek professional help. Common obstacles to mental health care access include limited availability and affordability of services, confidentiality issues, lack of insurance coverage, frequent delays and long waiting periods, and social stigma. Likewise, many service providers do not have the experience or expertise to work with individuals on the autism spectrum, particularly those with co-occurring mental health issues. Self-help interventions represent an increasingly popular alternative to therapist-delivered psychological therapies, offering the potential of increased access to cost-effective treatment for a range of different mental health issues. They provide an opportunity for the individual to gain some useful insights and begin to work through their problems with limited guidance from a therapist or mental health professional. Research has clearly shown that self-help strategies are effective, practical, and acceptable for many individuals in reducing mental health problems such as mild to moderate anxiety and depression, often alone or with other forms of treatment. Self-help interventions have the potential to play an important role in providing effective treatment to the large proportion of adults on the spectrum who are experiencing mental health issues.

While there is no shortage of books describing the controversies and challenges related to the diagnosis and treatment of autism spectrum conditions, there is a need for a practical resource for adults on the spectrum that promotes self-understanding and directly teaches effective ways of coping with their emotional challenges. Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT presents strategies derived from cognitive-behavioral therapy (CBT), adapted specifically for adults with autism, to help them overcome anxiety and depression, and improve their psychological well-being. The author takes the best of CBT therapeutic techniques to facilitate greater self-understanding, self-advocacy, and better decision-making in life-span activities such as employment and interpersonal relationships. This self-help guide provides evidence-based tools that can be used to learn new ways of thinking, feeling, and doing. It includes questionnaires, forms/worksheets, and exercises to help the reader:

  • Evaluate his or her autistic traits and discover their cognitive style.
  • Identify and modify the thoughts and beliefs that underlie and maintain the cycles of anxiety, depression, and anger.
  • Apply therapeutic techniques such as mindfulness, positive self-talk, guided imagery, and problem solving.
  • Accept the past and achieve unconditional self-acceptance.
  • Deal effectively with perfectionism and low frustration tolerance.
  • Avoid procrastination and learn to maintain positive changes to their progress

Used alone or in combination with therapy, Overcoming Anxiety and Depression on the Autism Spectrum: A Self-Help Guide Using CBT is an essential self-help book for adults across the spectrum looking for ways to understand and cope with their emotional challenges and improve their psychological well-being.

 

About the Author

Lee A. Wilkinson, PhD, NCSP, CPsychol, AFBPsS is a licensed and nationally certified school psychologist, chartered psychologist, registered psychologist, and certified cognitive-behavioral therapist. He has published widely on the topic of autism spectrum disorders both in the US and internationally. Dr. Wilkinson is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, also published by Jessica Kingsley Publishers and editor of a recent volume in the American Psychological Association (APA) School Psychology Book Series, Autism Spectrum Disorder in Children and Adolescents: Evidence-Based Assessment and Intervention in Schools.

No Shame for Extreme Night Owls

Author of An Occupational Therapist’s Guide to Sleep and Sleep Problems, Andrew Green is an occupational therapist specialising in sleep disorders. In a bid to clear the air about the myths that surround the early bird and nightowl stereotypes,  Andrew gently introduces the sleep disorders that are the root of the stereotypes that haunt those of us who just aren’t very good at sticking to ‘normal’ sleeping hours, if such a thing exists.

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In 1735, Benjamin Franklin made known the saying ‘Early to bed, early to rise makes man healthy, wealthy and wise’. Over two centuries later it turns out that the opposite may be nearer the truth. By comparing health and socioeconomic data relating to ‘owls’ and ‘larks’, Gale and Martyn (1998) found no evidence that early rising is actually more beneficial, and concluded that early bedtimes and rising times are not linked with ‘health, socioeconomic, or cognitive advantage [and] if anything, owls were wealthier than larks’ (p.1677). It is possible that Franklin learned in his long life that the earlier saying was inaccurate since the following is also attributed to him, presumably in his later years: ‘I wake up every morning at nine and grab for the morning paper. Then I look at the obituary page. If my name is not on it, I get up’.

In any case, the reality is that people are different and the tendency towards being an owl or a lark is inherited. For most people it is just a tendency – part of natural variation that can be accommodated in normal lifestyles, but at the extremes are circadian rhythm disorders. Circadian rhythms are the natural cycles that determine the timing of numerous body functions, including the sleep-wake cycle. When someone’s rhythm is advanced – when they are an ‘extreme lark’ – they tend to wake earlier and go to bed earlier than the norm; it is a very rare condition and Schrader et al. (1993) found no cases of advanced sleep phase disorder in a sample of 10,000 Norwegian adults. However, the same study found 17 individuals who met diagnostic criteria for delayed sleep phase syndrome (DSPS) – or who were ‘extreme owls’: it is therefore still an uncommon condition although the prevalence in adolescents and young adults may be as high as 10% (Wilson and Nutt 2013).

To have DSPS means that a person is unable to sleep until two hours, or longer, after a more conventional bedtime and naturally tends to wake correspondingly later. It might not seem much but is extremely disruptive to life. Someone with DSPS may not know they have it and think they have insomnia, perhaps going to bed at 11 p.m. in the hope of having eight hours of sleep and not sleeping until 2 or 3 a.m. However, they will still need to get up at 7 a.m. for work or school and have to get through the day. Whereas most people can manage after one short night, perhaps because of an early start for a journey, having DSPS is like having to get up at 4 a.m. every day, having gone to bed at 10 or 11 p.m., and then feeling sleepy every afternoon.

Individuals with DSPS complain that it is difficult to get to work reliably in the morning and that employers, and others, do not understand that they are not just being lazy. Some people are very embarrassed by staying in bed for half the morning. Others are able to adapt to some extent; for example, a research student might be able to work in the library during the night, arrange meetings in the afternoon and still have time to meet friends in the evening. The experience of DSPS has been investigated by Wilhelmsen-Langeland et al. (2012) in a qualitative study involving nine young people (age 16–23) in Norway. Participants talked about the difficulty of staying awake at school, and conflicts with others through being late when meeting, or unavailable to help with chores, for example, during the day, but the failure of others to understand was a key observation. Other people might suggest that they could just go to bed earlier – as if they could just try harder to sleep ahead of their biological preference.

Delayed sleep phase syndrome is a disruption of activity cycles and could be considered a disorder of occupation; it should be of interest to occupational therapists. Medical management could involve use of melatonin at night to encourage earlier sleep (supplementing naturally produced melatonin) and bright light (daylight or full spectrum artificial light that mimics natural light) on rising in the morning in order to help ‘reset the body clock’. In addition to these, chronotherapy involves going to bed successively later, a strategy that seems counter-intuitive, until the desired hours of sleep are reached; it is easier to adjust the timing of sleep by lengthening the day – in the same way that is easier to adjust to jet lag when flying east to west. It is then important to consider how the person keeps to more conventional hours.

In many respects maintaining more regular hours is like following advice for managing insomnia: keeping a consistent rising time (essential) – and seeing daylight on waking; avoiding daytime sleep that might delay night time sleep; doing regular exercise and having regular activity; having a clear winding down routine. In winding down it is preferable not only to avoid the mental or emotional stimulation that might accompany use of a computer late at night (and the temptation to play ‘just one more game’, for example) but also to avoid the blue light that is emitted by computer screens and televisions, which can suppress the production of melatonin.

Despite all such effort, however, it is likely that the individual is always going to be later than average and well-advised to avoid work that involves early starts. Finally, extreme owls might remember that there is no need for shame in rising late, which they cannot help. As Gale and Martyn put it, ‘there is no justification for early risers to affect moral superiority’ (p.1677).

References
 Gale, C. and Martyn, C. (1998) ‘Larks an owls and health, wealth, and wisdom.’ British Medical Journal 317, 1675–1677.
 Schrader, H., Bovim, G. and Sand, T. (1993) ‘The prevalence of delayed and advanced sleep phase syndromes.’ Journal of Sleep Research 2, 1, 51–55.
 Wilhelmsen-Langeland, A., Dundas, I., West Saxvig, I., Pallesen, S., Nordhus, I.-H. and Bjorvatn, B. (2012) ‘Psychosocial challenges related to delayed sleep phase disorder.’ The Open Sleep Journal 2012, 5, 51–58.
 Wilson, S. and Nutt, D. (2013) Sleep Disorders, 2nd edn. Oxford: Oxford University Press.

Andrew Green trained in occupational therapy in York and is now a specialist occupational therapist in North Bristol NHS Trust’s sleep disorders service at the Rosa Burden Centre. Learn more about his book An Occupational Therapist’s Guide to Sleep and Sleep Problems here.

Call for Comic and Graphic novel submissions

Jessica Kingsley Publishers and Singing Dragon (an imprint of JKP) have recently started developing an exciting new line of comics and graphics novels and we are now open for submissions.

At JKP we are committed to publishing books that make a difference. Our range of subjects includes autism, dementia, social work, art therapies, mental health, counselling, palliative care and practical theology. Have a look on www.jkp.com for our full range of titles.

Singing Dragon publishes authoritative books on all aspects of Chinese medicine, yoga therapy, aromatherapy, massage, Qigong and complementary and alternative health more generally, as well as Oriental martial arts. Find out more on www.singingdragon.com

If you have an idea that you think would work well as a graphic book, or are an artist interested in working with us, here is what we are looking for:

Graphic novel or comic – Long form

We are looking for book proposals that are between 100 and 200 pages, black and white or colour, and explore the topics listed above or another subject that would fit into the JKP/Singing Dragon list. Specifically we are hoping to develop more personal autobiographical stories.

Here are the guidelines for submission:

  1. A one-page written synopsis detailing the plot/outline of the book, as well as short bios of all the creators involved.
  2. Character sketches of the main characters with descriptions.
  3. Solo artist/writers or writer and artist teams should submit 5 to 10 completed pages to allow us to get a sense of the pace, art style and writing.
  4. Solo writers will need to submit 10 to 20 pages of script as well as the one-page synopsis from point 1.

Comic – Short form

We have some shorter comic projects underway and are looking to expand the range of topics covered. These books can run from 20 to 40 pages, black and white or colour, with dimensions of 170x230mm. We are mainly looking for comics that provide ideas and information for both professionals and general readers.

For example, the first in this series, published by Singing Dragon, is a book exploring the latest developments in chronic pain research.

Here are the guidelines for submission:

  1. A one-page written synopsis detailing the narrative style and subject matter to be explored in the book. Also include short bios of all the creators involved.
  2. Solo artist/writers or writer and artist teams should submit 3 to 5 completed pages to allow us to get a sense of the pace, art style and writing.
  3. Solo writers will need to submit 5 to 10 pages of script as well as the one-page synopsis from point 1.

When submitting please provide low-res images and send them, along with everything else, to Mike Medaglia at mike.medaglia@jkp.com

If you have any other ideas that don’t directly relate to the subjects described above but you feel might still fit into the JKP or Singing Dragon list, please feel free to get in touch with ideas and enquiries on the email above.

The Feelings Tree – helping children talk about emotions

The holidays are often filled with an assortment of powerful emotions, for both children and adults. This can be related to loss or upheaval in our lives, to anniversaries of significant loss, or simply because the holiday period allows time for reflection which can bring up difficult feelings for us all. So we wanted to share a free activity from the lovely Seeds of Hope Bereavement and Loss Activity Book, which aims to help children deal Jay_Seeds-of-Hope-B_978-1-84905-546-8_colourjpg-printwith loss and/or change through nature, and will be especially helpful to those finding it difficult to cope with bereavement.

The Feelings Tree is a great activity to help you get started talking to children about difficult emotions, as well as all emotions more generally. The birds in the tree can be used as starting points to bring up difficult feelings you may want to talk about, or the child you’re doing the activity with may use the opportunity to talk about emotions they don’t feel comfortable addressing head-on. However you use The Feelings Tree you’re sure to have some fun!

Download The Feelings Tree here

Read an interview with the author, Caroline Jay, on what inspired her to write the book and how contact with nature can help us deal with loss, here.

You can also find out more about the book, read reviews or order your copy here.

Catching up with Ann Andrews – inspirational author of Positively Parkinson’s

Ann Andrews worked as a television and theatre producer, researcher, teacher and crisis counsellor. She was diagnosed with Parkinson’s in her fifties, and went on to write the informative, practical and inspiring guide to living well with Parkinson’s; Positively Parkinson’s.  We caught up with Ann to find out what she’s been up to since the publication of her book, how she’s managing her Parkinson’s symptoms now, and what she’s looking forward to in the future.

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Ann speaking to fellow Parkinson’s sufferers

Since the publishing of Positively Parkinson’s I have travelled through most of the North Island and some of the South Island of  New Zealand talking to groups of people with Parkinson’s. In doing so I have met people from all over the World and everyone has told me how important the book has been for them. It seems to have achieved what I most wanted it to do:  help us all have a better understanding of Parkinson’s and to become a do-it-yourself guide to helping ourselves stay well.

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Ann at a signing session

I went to New York last year and am going back again this Christmas. We have a daughter there and a delightful about-to-be-two-years old grandson. While I was there I tried to promote the book which is published in the United States with the title I have Parkinson’s. What should I do? I found not many people had heard of it. However, I got to know a great group of Parkinsonian’s, members of a Brooklyn group.

A couple of years earlier a NY dance company had visited Auckland and offered dance lessons for people with Parkinson’s. They were called the Mark Morris Dance Company. One of the dancers John Heginbotham features in Positively Parkinson’s (page 126). While in NY I got in touch with John and another dancer David Leventhal, and was thrilled to be invited to a dance lesson at the home of Mark Morris Dance.

John was about to leave to join the same dance company in San Francisco and I was able to be there for his last lesson. In doing so I met the Brooklyn group. I was fortunate in being able to attend about five dance lessons with David Leventhal and student members of the dance company.

Pamela and Ann chatting at Mark Morris NY, December 2012

Pamela and Ann chatting at Mark Morris NY, December 2012

I describe the New Zealand lesson in my book (page 127) but being there at the home of the dance company was very special. As well as dance lessons I went to some movement lessons with Pamela Quinn, a dancer who has early onset Parkinson’s. She is so fit I found it difficult to keep up with her in class, though most of the other members seemed to be able to.

You can see her and some of her exercises on YouTube.  If you would like to know more about the dance lessons you could get in touch with Maria Portman-Kelly who manages the Parkinson’s classes at the Mark Morris Dance School.

What these classes also achieve is to provide a meeting place for people with Parkinson’s. Attending class once or twice a week at Mark Morris or the Juliana School at the Lincoln Centre means New Yorkers can meet for coffee and a chat as well as exercise.

Ann reading her new children's story book

Ann reading her new children’s story book

This year I have written a bright picture book for children and grandchildren of someone who has Parkinson’s; a child’s guide. Called Grandma’s Brain, it is illustrated with drawings of me and my grandsons, my brain, a young space traveller and space pirates.  My son, a magazine publisher, is publishing the book which will be available sometime early in 2015. By then I hope to also have a website. The story is meant for children aged between 5 and 12 to read themselves or be read to. It is light, humorous, entertaining, yet informative and is colourfully illustrated. Look out for it!

In the last year I have had a few falls and my balance is not what it used to be. It has been both an eye-opener and a wake-up call.  I now use a hiking stick when out and about. I find friends and family very quick to offer an arm, which is nice and I take it without demur.

More of my friends have now had the deep brain stimulation operation, one as young as 43. They seem a lot better and have been able to reduce their medicine intake.  There is also a very different research programme here in Auckland which utilises the same initial brain operation, but for quite a different reason. I’ll try and explain it: To begin with… On an island in the Auckland islands group (far south of NZ into Antarctic waters) some pigs were left about two hundred years ago. Because of their isolation they have developed into a healthy virus free herd. Some of these pigs now live in a separate isolated location in New Zealand.

Pig tissue has been used successfully in medical treatments for many years, but this research is about pig cells. The programme entails removing some choroid plexus cells from deep within the pig’s brain. The choroid plexus in all brains releases a growth factor that repairs cells and makes nerves grow. Obviously we can’t transplant human choroid factor cells but we can use those from pigs, especially virus free pigs.

To inhibit the immune system from rejecting the pig cells they are placed in tiny capsules rather like Goretex which shield the cells while letting nutrients in and growth factors out. The treatment involves surgically placing the cells into the brain to encourage the nerves that have died back to regrow. A group of six people with Parkinson’s are taking part in this research. They will be assessed carefully and if there is no improvement after six months they will be offered the alternative deep brain stimulation.

I have tried to think of anything I particularly wanted to add to Positively Parkinson’s. There have been things that occurred to me, but which I can’t remember at this moment. I’m still experimenting. I have been on a course of hormone Andrews_Positively-Park_978-1-84905-411-9_colourjpg-printreplacement which is supposed to help me remember things. I’m not sure it does, but six months on my memory does seem better. I’m sure one of the most helpful things you can do is keep working on yourself. Hold a constant dialogue with your brain. Tell it to take bigger steps, make a bigger voice and do the exercise you’ve been putting off.

One group I don’t mention in the book is the nurses working in homes for the elderly. I have talked to a number of them and found they had little understanding of Parkinson’s in the people they were caring for. They had no idea that it could be the cause of a mask-like face, the inability to smile and the lack of a voice; with the result that many of them misjudged their patients completely.  To me this is dreadful.  I have tried to impress on them that this kind of ignorance would be what people with Parkinson’s fear most.

Not a good ending. On a positive note I’ve just completed another Lee Silverman Voice Training Programme and found I had slipped back by not practising at home enough. I’ve tried LSVT Big from a useful YouTube programme called LSVT Big home exercise video. It’s expensive to learn the complete programme here so I add some of the video exercises to the same ones I have in the book.  I have added weights to try and keep my muscle tone and then, of course, I have my new exercycle which I can ride inside when the weather is not conducive for walking.

So, think big, think positive and keep doing everything you can. Your brain will find new pathways.

Ann Andrews.

Find out more about Ann’s book, read reviews or order your copy here 

Are we too afraid to listen to disabled people’s desires?

Tuppy Owens, author of Supporting Disabled People with their Sexual Lives, has worked with and supported disabled people for over 35 years. She is the founder of Outsiders, a group providing peer support and dating opportunities for physically and socially disabled people, handles the Sex and Disability Helpline, and set up the Sexual Health and Disability Alliance (SHADA) for health and social care professionals. In this article, Tuppy examines how our attitudes towards the sexuality of disabled people have changed over the years, and shares some success stories she has witnessed as part of her work.

Listening to Disabled People’s Personal Desires, Taking them Seriously, and Supporting them in their Journeys to Fulfillment

The past few decades, it has become increasingly difficult for disabled people to enjoy sexual expression, either alone, with partners or commercially. Back in the old days, things were laiséee faire. Assisted masturbation was often offered by nurses and staff. There was an adventurous, experimental attitude to sex, and no strict regulations about prostitution. I am told a residence in Sussex for wounded World War Two veterans operated brothel-style!Owens_Supporting-Disa_978-1-84905-396-9_colourjpg-print

We now live in an era of transparency and risk assessment; one nurse described it to me as residential homes operating in a liability and blame culture, with loss of person-centred care, of which sexuality is at the heart. Only some health professionals are allowed or prepared to attach sex toys to the genitals of a disabled resident who is unable to pleasure themselves. Nobody has come up with a toy which the individual could activate themselves in the middle of the night without help, but I’m working on it.

Thankfully, more disabled people can go to accessible clubs and bars, and more of them are in work: all places  where they may find a partner. However, today most people use online dating, which is frought with difficulties. Disability dating sites sadly attract preditors and are unsafe to use, unless, like Outsiders, applicants are carefully vetted. Many residences have single rooms and don’t allow bed-hopping or residents to share.

A leading disability publication published an article in the 90’s stating that prostitution is illegal in Britain (which it’s not, and never has been in Britain) and then a false rumour circulated that the 2005 Sexual Offences Act criminalised supporting another person to find a sex worker, saying that it was “procurement”. People who should know better still come up with this nonsense. With that and the over-inflated publicity on trafficking, and threats of criminalising the buying of sex, few health professionals or local authorities will entertain their residents, patients or clients gaining the many benefits of a sex session with a professional.

What else holds health and social care professionals back? My book Supporting Disabled People in their Sexual Lives, published by Jessica Kingsley Publishers on 19th November, looks at the issues in depth, as I have been engaging with disabled people to support them in their various sexual needs for over thirty years, in the Outsiders Club. Basically, as my book says over and over again, our governing bodies do not offer training, guidelines or policies on sex and disability. Myself and Lorna Couldrick, another long term activist, managed to get a short paragraph on the topic on the Royal College of Nursing website this year. SHADA, the Sex and Disability Alliance, which I run, is starting a project to change things around with the governing bodies. But I expect it will be a long battle, especially in the medical arena.

Our laws against discrimination make it illegal NOT to support disabled people to enjoy the same pleasures as others in the privacy of their own homes.

Many disabled people have received worse than useless sex education. Their sexuality so ignored, that their body confidence, sexual confidence and overall sense of wellbeing may be at rock bottom. Some feel their body does not belong to them, as it has only been poked and operated on by doctors. Privacy may have been been denied them. Having been abused, bullied, teased and sexually rejected, they may feel they are on the social scrap heap. They need a great deal of support to climb out of this hole, using body image therapy and sessions to discover what pleasures their bodies are capable of feeling, and to catch up on missed teenage experimentation.

Mat Fraser has workedtuppy blog - mat fraser 1 really hard on himself and his ‘thalidomide arms”, and he’s come a long way. He was photographed naked by Ashley Savage in one of Ashleys’s photo shoots designed to empower the subject and make them look sexy and strong. Mat learned Karate, became a drummer in a rock band and trained as an actor. All these things built up his sexual self confidence. He became the presenter at our fund-raising events, and even did his own striptease act, removing false arms and showing his real ones. He learned to love his own arms. Now he is married to one of New York’s top erotic performers and the two of them starred in “The Beauty and the Beast” which toured Britain this year.22/02/2011 NEWS: The Freak & the Showgirl. Mat Fraser and Julie Atlas Muz Mat has now become a Patron of the Outsiders Trust.

One of our other patrons, Diego Soto-Miranda, severely impaired with spinal atrophy, gave us an excellent tip on how to bring a companion into your life, as a masturbation aide, lover and partner;

Finding a lover/partner is all about maximising circumstance:

  • make them laugh
  • be very polite, and
  • figure out what they want and give it to them.

A wheelchair does not come into the equation. Few say they want someone to climb Everest with them. Usually, they want respect, appreciation, someone to listen, but overall the best aphrodisiac is laughter. Make her/him feel like the centre of the universe.”

Diego worked on his own self confidence to work this one out and put it into practice. He is Brazilian, which might help! In Brazil, flirting and sex are taken seriously. It’s time we started taking such things seriously here.

Tuppy Owens
The Outsiders Trust

Our websites:

www.outsiders.org.uk

www.SHADA.org.uk

www.TLC-trust.org.uk

www.SexualRespect.com

www.AdvocacyProfessional.com

You can find out more about Tuppy’s book here.

‘Contact with Nature can be immensely healing.’

Caroline Jay founded and runs the Seeds of Hope Children’s Garden, a national charity which aims to promote the use of nature in helping children manage loss. For twelve years she ran a SAND (Stillbirth and Neonatal Death Charity) group, supporting families after the death of a baby. We spoke to Caroline about using life cycles to teach children about change, how nature can help us come to terms with loss, and how her own experiences inspired her to write her new book, Seeds of Hope Bereavement and Loss Activity Book.

What inspired you to write the book?Jay_Seeds-of-Hope-B_978-1-84905-546-8_colourjpg-print

A love of Nature and of being outside in the sun and air has been my inspiration for the Seeds of Hope Activity Book – that and the realisation that so much in Nature echoes the changes that happen in life.  None of us can live life without change.  All change implies loss and new beginnings  – and this is a pattern ever present in Nature.

In your book, you use life cycles in Nature as a means of explaining death.  Why did you choose that particular method?

Mainly because life cycles are fun!  How amazing to see frogspawn turn into tadpoles that then turn into frogs!  Or a grub become a caterpillar that disappears into a chrysalis out of which bursts a butterfly!  Also because looking at the lifecycles that happen all the time in Nature can help us understand that change and loss are part of a natural order.  “Death is a part of life is a part of death is a part of life is …” and so on as the circle turns.  A seed becomes a plant that becomes a flower that becomes a fruit that contains the seed from which a new plant will grow.  A baby becomes a child who becomes an adult who becomes an old person who will eventually die as new babies are born.  The 4 stages of the life cycle in Nature reflect the 4 stages of a human life.  The pattern continues: there are 4 seasons in the year, 4 weeks in the month, 4 quarters in the year.

Have you found yourself applying the methods you describe in the book in your own personal life?  Have they been helpful?

When my first child, Laura was stillborn, I found myself completely out of balance.  My hospital notes said I was a mother but I had no child.  The world around me seemed suddenly full of babies and heavily pregnant women.  The pain of grief was palpable.  I took long walks in the woods.  I found contact with Nature and the outside world to be immensely healing and grounding at a time when my world had been turned upside down.  Grief for most people can be a very dark place.  Planting seeds or plants and watching them grow in the Spring after the darkness of Winter can be uplifting and provide some hope of brighter times to come.

Does the grieving process for children and adults differ greatly?

The huge range of emotions we may feel when grieving – sadness, anger, shock, disbelief, fear, guilt, numbness to name a few – are generally speaking the same for children and adults.  One difference is that children are usually only able to stay with their feelings for short periods of time – a bit like jumping in and out of a puddle, they may be very sad one minute and want to go out and play the next.  Adults will generally have easier and clearer access to the information surrounding a death or a loss whereas children will generally be dependent on the adults around them to tell them the facts.  It is a natural instinct to want to protect children from painful life experiences but, in the case of a death, this can lead to confusion.  Children fare better when they are given honest information.

What has your experience with SAND and the Seeds of Hope Children’s Garden taught you about how people deal with loss?

Everybody responds to loss and bereavement in different ways.  There is no right and wrong way to travel the road and there are no shortcuts.  Very generally speaking men and women tend to grieve differently in that women are inclined to want to talk about their feelings for longer while men are more inclined to want to take action to restore the status quo.  Partners, whether male or female, often grieve in different ways and at different speeds.  In the case of a child’s death, the loss is equal and therefore no one person is better able to support the other.  Some seek out a support group while others prefer to grieve privately.

How do you hope your book will make a difference?

The activities in the book serve to provide structure for and clarify the grief process for a child allowing them to see the natural process of the cycle of life in Nature.  The images encourage exploration and observation of creatures, plants, and seasons.  The way in which a child’s journey through grief is handled will fundamentally determine how they manage all future losses in adulthood.  I hope the Seeds of Hope Activity Book will empower children to explore their feelings in ways they can understand – by drawing, playing, exploring and having fun.

You can find our more about Caroline’s book, read reviews or order your copy here.

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