Category Archives: Huntington’s disease

Help to change the law on Assisted Dying

Mum’s story on Youtube

I have just sent a letter to the politicians via http://www.yesuntiltheend.co.uk/ . This is an important issue and the law NEEDS TO CHANGE.
Please click on the link, watch the short video and then click YES to send the letter.
This is my letter, personalised.

Dear leader,

I am writing to let you know I support the Assisted Dying Bill and I want this government, and any future government, to allow time for this issue to be fully debated in the House of Commons.

Parliament needs to act on assisted dying to ensure that fewer dying adults – and their families – face unnecessary suffering at the end of their lives.

Assisted dying, limited to terminally ill, mentally competent adults, should be an option alongside access to good quality end-of-life care. We need a compassionate, strictly safeguarded and clear approach to suffering at the end of life.

It cannot be right that individuals have to take their plight to the courts, or into their own hands without the advice and support of healthcare professionals. A change in the law would bring clarity to the law and provide safety and security for the terminally ill and healthcare professionals.

Above all it will give dying adults peace of mind that the choice of assisted dying is available if their suffering becomes too great for them in their final months of life.

Without a change in the law, terminally ill patients will continue to take decisions without adequate safeguards, whether by travelling to Dignitas to die, ending their lives themselves, or being illegally helped to die by doctors.

The state of Oregon passed an assisted dying law in 1997. There have been no cases of abuse and no calls to extend the law beyond terminal illness. According to Ann Jackson, Executive Director of Oregon Hospice Association from 1988 to 2008, assisted dying “. . .has been responsibly implemented with none of the predicted dire consequences.”

My view is that there is no reason a similar law cannot work safely in the UK.

Two of my brothers had Huntington’s disease (as well as my father and my aunt). One of my brothers lived until this terrible disease finally killed him; not being able to walk, talk, feed himself or even swallow. He was doubly incontinent and had no quality of life. My other brother, Nigel Goodman, did not want to live to become so trapped in his body and suffering in this way. He begged his family and friends to be with him at his death and to help to end his suffering. My Mum assisted his suicide and was initially charged with murder and then aiding and abetting a suicide. She was very alone and she broke the law because Nigel was suffering and he did not want to die alone. The Assisted Dying bill would not have helped her but because of my story I have had many, many people express their views to me of how their hands were tied when their suffering loved ones begged them to help them end their suffering at the end of their lives. How can we be so cruel as to just say, “I’m sorry, I can’t help  you.”

 I am a holistic therapist and I work in various care-homes. I work with people with locked in syndrome and with MS patients, dementia and other conditions. I see how much love is around these people and that some of them have some sort of quality of life. But this is about CHOICE at the END OF LIFE. The law in Oregon is not abused. With proper safeguards in place we can move forward to be loving people who care as much about a good death as a good life.

Who are we to tell individual people, suffering from a terminal illness, that they have to live and get on with it? We are not God. Each individual case is different. It’s about choice. It’s about human love, kindness and empathy. Please listen to the people.

My view is shared by the overwhelming majority of the British public: “The statistically robust British Social Attitudes survey suggests that a substantial majority of people agree the law should be changed so that terminally ill, if not other people can be assisted to end their own lives.

There have been several other surveys of varied statistical merit but none of these has reported a majority opposed to change” (Ministry of Justice, May 2014)

I believe it is time for Parliament to act, and for the main political parties to show leadership. I would be very interested in hearing your views on a much needed change in the law.

Kind Regards

Deborah Goodman

Address
Email Address

 

 

Meditation for Huntington’s Disease

“Of one thing I am certain, the body is not the measure of healing, peace is the measure.”
Phyllis McGinley

I am absolutely thrilled and nothing less than excited to announce that Simon Rowe, psychotherapist and co-founder & co-owner at freemeditations.co.uk has created a meditation specifically to help people with Huntington’s disease.  HD meditaiton cover

Download the meditation
When Simon suggested recording the meditation I jumped at the chance to say ‘yes please’. I know and understand the healing power that meditating has, as you give your full awareness to it.

Indeed, my own relative was diagnosed with ‘terminal’ pancreatic cancer and the medical profession were talking about hospices and suggesting that there was no point in carrying out surgery for her. ELEVEN years on she is still living an active life, part of which includes regular and deep meditations. When science can’t find the answer we must look deeper into ourselves. My relative is not cured, but her story is remarkable.

There is much going on in the field of energy healing and I would recommend anyone and everyone to engage in regular meditation as an aid to reliving stress, healing and staying healthy.

Relief from Huntington’s Disease is a meditation that can relax and calm your fear. Simon is an extremely experienced psychotherapist and creator of meditations and for those of you who are not familiar with either concept, I urge you to let go of any fear or preconception and relax into the voice that will guide you to where you need to be. I have faith that this mediation will reach those that it needs to reach and that it will help and heal those that it needs to help and heal. Remember, a person with HD also has the other regular issues that someone without HD can have, such as blocks from childhood experiences and normal fears and doubts on top (or underneath) the other issues that HD brings with it.

Of course there is no claim that listening will immediately evoke a cure, however the positive effects of meditation are well documented. With repeated, regular use the powerful self-healing mechanism within the body and mind can be activated more strongly. It is fine to use this healing meditation in combination with other traditional and/or holistic methods of treatment.

If you have never experienced a guided meditation before, and find it difficult to concentrate on what Simon is saying, just take a long deep breath into your abdomen, and then let go of the tension as you breath out again. Let go of ‘trying’. Your unconscious self will absorb what it needs to.

Whilst listening to the meditation, you can enjoy a calming process of settling the mind and body as you are guided to reconnect with the stillness in the depths of your being and activate the body’s innate self-healing mechanism to support and enhance the quality and experience of your life.

This meditation will help you to de-stress, let go of fear and relax into yourself which will, in turn help you to cope with your everyday life. It may help with your self-esteem and I believe that, at a deeper level, healing can take place. In my mind, anything is possible.

The meditation is given at a cost of £3.99 but if you use this code HDDG20 which Simon has created for us, you will receive a 20% discount. I truly believe that this is a great investment in your health and wellbeing and every download will generate a £1 donation to the HDA. I thank Simon for this kind and generous offer and for spreading the energy this way.

For the best effect, please use headphones. It is recommended that you listen to this Meditation on a daily basis. Ideally, set aside 45 minutes in a peaceful and comfortable place where you will not be interrupted.

*Please note that no claims are made regarding the curative nature of this Guided Meditation. This is no substitute for ongoing personal healthcare. This recording is offered as an adjunct to assist and support those with their individual healing journey.

For more information on accessing support for Huntington’s Disease, please visit: The Huntington’s Disease Association.

For more meditations, please visit:  freemeditations.co.uk

 

 

 

 

 

 

 

Landmark Lecture at Bromley College, Orpington Campus

orpington campus

I was thrilled to be invited by the principal of Bromley College, Sam Parrett, to speak to their students about my experience with Huntington’s disease and to have a Question and Answer session on dying with dignity.

WP_002862Bromley College launched their Landmark Lecture programme on 18th October 2012 and I feel honored to have been invited to speak at the Orpington campus recently, on 30th January 2014.

Psychology lecturer, Stephen Elworthy gave a presentation on the origins of Huntington’s disease and showed a video of Nancy Wexler’s amazing work in Venezuela. Mrs Parrett then introduced me with what I can only describe as a ‘big up’! She praised me for my charity work, my treks and my book, which she has read and enjoyed. I must admit, I got quite emotional as I listened to her kind words about me.
WP_002852My lecture was well received and I managed to get through it without too much of a problem. I did get a bit choked up a couple of times and a student in the front row was very emotional too. Thankfully Mr Elworthy was on hand with the tissues! I almost managed to break the microphone as I forgot the battery pack was resting on the lectern. As I walked away from it to pick up a book, the pack flew off of its resting place and fell on the floor, splitting open and throwing the batterys across the room. Oh dear, and the whole lecture was being videoed.

We had a short break and returned for a Q & A on Dying with Dignity. I spoke about Lord Falconer’s assisted dying bill and explained whDeborah Goodman photo2 low resat it would and would not cover. Many of the concerns from the audience were about people who have been diagnosed with a terminal illness who want to die before the illness gets too difficult for them to cope with. The questions were also about people who were no longer competent to make that choice for themselves. There seemed to be a strong view that these people should be allowed to end their lives.

I totally understand and agree with their concerns and Lord Falconer’s assisted dying bill does not cover this. But the bill is a step in the right direction and I hope and pray that the law is changed.

The assisted dying bill WOULD

  • Provide safeguarded choice and control to terminally ill adults and prevent prolonged suffering among these dying adults who want to have choice over how and when they die.
  • Ensure that terminally ill adults who have assistance to die do so having met clear pre-determined criteria and have explored all their alternatives; rather than as at present, in secret, when checks are only made after someone dies (as set out in the prosecuting policy on assisted suicide).

 The assisted dying bill WOULD NOT

  • Legalise assisted suicide for people who are not dying (for example disabled people or older people).
  • Legalise voluntary euthanasia where a doctor administers the life-ending medication. Under the Assisted Dying Bill the person choosing an assistance to die would take the final action to end their life, by taking a prescribed life-ending medication.
  • Legalise a system where the person being directly helped to die is no longer competent to make that choice for themselves. This Assisted Dying Bill would only apply to adults with mental capacity both at the time of their request and at the time of their death.

I am a member of Dignity in Dying, a national campaign and membership organisation with over 25,000 active supporters campaigning to legalise assisted dying, within upfront safeguards, for terminally ill, mentally competent adults.
Please join the campaign – go to http://www.dignityindying.org.uk

WP_002857The session ended with the signing of some books and a couple of photos for a press release. I was presented with the most gorgeous paperweight by the college as a mark of their gratitude, which I love and will display with pride. A couple of the students came up to me with a big hug to share, which was lovely, and two of the colleges professors (I think that’s what they call college teachers, or is it Lecturers?) congratulated me on my talk and suggested that they would like me to speak to their students, so watch this space, I hope to be invited back again 🙂

The college has purchased a few copies of my book, Hummingbird, for its library.

Hummingbird book is available on Amazon. http://amzn.to/17egMgv Bromley college 2The college is writing a press release and below are comments from two of the students who are both studying on the Level 3 Health & Social Care course.

“Deborah’s story was eye opening, heart-warming and emotional – I hung on her every word! I want to work in nursing and I’ve learnt so much from Deborah today about Huntington’s Disease.” Siobhan
“It made me realise the ins and outs of Huntington’s Disease and how it is passed on through families. I hope to use this knowledge in my work placement with people with disabilities.” Jade

 

 

Yoga and Mindfulness Weekend Retreat

YOGA & MINDFULNESS WEEKEND RETREAT
With Christiane Kerr & Sarah Linsey
Oxon Hoath  Hadlow  Kent 18 – 20 October 2013
mindfulness retreat house

Oxon Hoath is a stately home, situated in 73 acres of beautiful Kent countryside and is the perfect place to relax and unwind. A haven of peace and tranquillity only 45 minutes South East of London in Hadlow, near Tonbridge, Kent.
mindfulness retreat roomThe yoga will take place in the spacious and light dance studio and will include asana, breath work and relaxation; a quiet and explorative approach influenced by the teachings of Vanda Scaravelli. Mindfulness exercises taught as part of the weekend will serve to deepen and enhance the experience.

mindfulness retreat loungeYou will arrive at your retreat from 5pm Friday and unwind with your first yoga session before supper, followed by an optional relaxation session before bedtime. Both Saturday and Sunday mornings will begin with an early breathing and mindful movement practice before breakfast.  There will be longer yoga sessions each morning before lunch and afternoons will be free to explore the beautiful countryside and relax.

We will also have an experienced therapist who can offer aromatherapy massage, reflexology and Indian head massage, as well as blend oils for clients. Booking in advance is essential.

On Saturday there will be an evening yoga session before supper and an optional mindfulness session before bedtime. On Sunday there will be a final session before the retreat ends at 5pm.

The vegetarian food has a high reputation and the bedrooms are comfortable. Accommodation is mostly in twin rooms with ensuite bathrooms; those without an ensuite have a bathroom close by. There are a few single rooms which can be booked for a supplement. There are public rooms for relaxing and socialising with a small bar if desired.
mindfulness retreat bed
The full cost of the retreat including all yoga sessions, accommodation and delicious vegetarian meals is £320. There will be a small supplement if anyone has additional dietary requirements.
The weekend is open to all levels of yoga students from beginners to those more experienced who wish to deepen their experience of yoga and their own personal practice. Two teachers will enable students get plenty of attention and work at their own level. All yoga and mindfulness sessions are optional.

For more information or to book, please contact Christiane or Sarah.
Places are limited to 18.

Christiane Kerr: 0208 995 3352 info@calmforkids.com
Sarah
Linsey: 07790 168863 www.sarahlinseyyoga.co.uk
Oxon
Hoath: www.oxonhoath.co.uk


Not my first blog but the first on my brand new website

Hi everyone.
I’m so pleased to launch my new website today. It needs some more work but at least now it’s up and running and I can interact with other social media, and with you, in a more efficient and professional way.
I’ve dDeborahone two blogs before. The first blog I ever did was when I was fundraising and training for my Great Wall of China Trek. The second blog I did was for my Kilimanjaro Trek. Both came in very handy to refer back to when writing my book.
I’m looking forward to blogging again on my brand new WordPress website! I’ll be learning how to navigate around WordPress as I go.
Here’s looking forward to learning, and sharing, new and exciting things.

~ Namaste ~