Page 14 - TalkCare_Issue5_Online.qxp_OACP Talking Care Issue 4 July 2017
P. 14

 This is...
Briony’s story:
Briony identifies her phases and helpful points of ‘living with PD’
  Briony identifies several phases of Parkinson’s Disease she writes:
 First phase: Post­diagnosis, two to three years of ‘anxiety’. No medication at this point as it is more effective to start Parkinson’s medication later. PD felt like ‘wearing a coat of armour,’ but the introduction of early medication lifted the heaviness away.
‘I could turn over in bed and get out of bed’.
Second phase: Three to ten years most productive, coming to terms with the future. It was a relief – smile on my face – rather than down and miserable. I gradually became ‘more positive’, my mindset changed, and I began to embrace life once more. Some people have to work at it ‘practical offerings’ can help. Resistance – my fight back, going public making a noise about ‘Living with Parkinson’s Disease’ helped me. I did an BBC interview for the You and Yours, Radio 4 programme, local radio, forums and wrote blogs.
Third Phase: Acceptance and resignation. More and more difficult coping with normal things. Diet and protein eliminations interfered with Parkinson’s drugs, I learnt to eat small protein­free meals during the day and save my main meal until evening, my medication works very well following this regime. My consultant offered ‘Deep Brain Stimulation’ (DBS).
DBS was a major decision and the outcomes mixed. Adverse effects were falling and speech problems. I had two operations. My symptoms did improve but there were problems I have no regrets. They did help to halt my decline.
• Ask questions and seek answers to your questions. To assist you in doing this ask a friend/family member to help. Write the questions down and take them with you to your GP or Consultant appointment.
• Brace yourself for the range of responses to your diagnosis and react sympathetically. Ask some someone to go with you to appointments to take notes.
• Do some research ­ knowledge is powerful and allows you to engage in debate and to raise public awareness of PD.
• Look after yourself ­ follow medical advice and maintaining your general health irrespective of PD
• Be aware of choices offered.
• Acknowledge that PD is a progressive
disease and make the most of ‘now’. Investigate all opportunities offered to you.
• Be mindful that your mood influences your physical well­being. Optimism is essential.
• Acknowledge your limitations and be prepared for adventures
• Self­help – try to understand
• Exercise – Hydrotherapy and Pilates • Diet – ‘protein’ management
• Mind – keep busy
• Outreach – meet people
• Acceptance – ‘change and get a life’ • Keep smiling
 Briony gives us her helpful and key points: formula for surviving Parkinson’s Disease
   Briony’s key points to surviving Parkinson’s Disease
 Surviving and Thriving with Parkinson’s – A practical guide to living well from a 20­year Parkinson’s survivor by Briony Cooke
 Authors hints and tips to fare better with PD
• Open your mind and recognise the condition, be prepared to ‘research, read, learn and understand’.
• Have optimism – deal with your diagnosis, ‘I have to be cheerful and busy and like to be distracted by something, I have four tortoises to look after! Get involved with a hobby or interest.
• Keep your mind on something else – don’t dwell on your ‘Parky’, live your life your way, determine your own way of travelling with Parkinson’s.
  After interviewing Briony and reading her book what strikes me most is that information from ‘real lives’ OF PEOPLE who are living through a diagnosis, illness or condition is of huge importance to others. Insight can really assist and reaffirm to others that they are not alone, this can be of great comfort. Courage to voice experiences can bring change and benefits not only to sufferers and their families but also to medical professionals.
Note: The internet is a powerful research and resource tool. A question typed into
a search engine brings up a plethora of information that can be helpful, but users beware, as sometimes this virtual world offers up information that may be incorrect and misleading.
Always search trusted sites
like NHS Choices
The information contained at NHS Choices is regularly updated, look for the Information Standard Logo, this kitemark
ensures the quality of the
information published. Or, go
back to your GP for a further appointment and request a patient leaflet about a condition or treatment.
 Article written by Jane Wood OACP
  Aims of the book: Written to help others ‘live well and thrive’ by learning about how to manage and understand Parkinson’s disease.
Briony comments: ‘If I hadn’t had ‘Parkinson’s’, I wouldn’t have met the great friends I have now, nor the new working opportunities. You ‘never get a day off with PD’; that would be my dearest wish’ to have one day where I was free of PD, but I’m still travelling on this journey and through my endeavours, I’ve adapted positively to ­ Living with Parkinson’s ­ and you can too! To learn more visit:
ISBN: 978­0­244­36140­2
Visit: Surviving­Thriving­Parkinsons­Briony­ Cooke/dp/0244361401c

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