| I first met Danny when I was a PDNS in Bromley. I had not worked with Parkinsons before and was learning on the job. Danny was one of the first young People I had met with YOPD and at that time one of the most complex case. I first saw Danny running in the community when i was out seeing patients. I noticed he had a strange run and was actually running and dropping into the road. At this time I had no idea he had PD until I was asked to review him at home with his wife and very young daughter. At this time and Danny was still working in London. We discussed the commute to work and the impact the hours he was working was having on his Parkinsons. Danny had developed ICD issues which varied and it was this that was having the biggest impact on his family life. Danny was always a person who was driven and accepted nothing but to be the best in everything he did hence why he had been awarded the OBE. However this drive following his diagnosis of YOPD was difficult to control and in fact was worsened by him starting on a dopamine agonists. His insight into these symptoms were poor and as a nurse a real challenge for me to manage. Danny agreed to me publishing his case study as below. Little was known about ICD behaviours at this time so I had little to fall back onto as a nurse but after much research across the world we revised all of Danny’s medications withdrawing the agonists but at the same time struggling to prevent Levodopa addiction known as dopamine deregulation which often replaces the ICD behaviours when changing medications. Danny eventually changed his behaviours by introducing exercise into his regieme again as pointed out below in his case study.
Danny |
| Orpington, Kent, UK |
| Married to Jossefer for over 22 years with one daughter Shannon who is 22 |
| Sport and endurance events , keeping fit and healthy including going to the gym, |
| being with family at home, music and reading |
| Civil Servant – Inland Revenue/HMRC – Employed for over 33 years until retirement |
| on grounds of Ill health the day after my 50th birthday on 21 May 2013 |
| MBE awarded by the Queen for outstanding services to local government |
| 3 Marathons and over 33 half marathons with personal best times of 3 hours 5 mins |
| (London Marathon 1992) and 1 hour 18 Mins respectively |
| 23 December 2004 |
| Extreme stiffness in right leg after about 6 miles of running which prevented me |
| from continuing. Uncordinated, akward and stiff running motion of right arm. |
| This extended to dragging my right leg and limping when walking. |
| Small handwriting, Leg cramps in night and unexpected sudden loss of balance |
| Founded and set up my own charity – BeatParkinsons in September 2013 |
| Voted onto board of the European Parkinson’s disease association (EPDA) in |
| November 2017 |
| Between 2010 and 2014 I raised the level of endurance and developed my own |
| creative and unique events and have endured a total of 9 including |
| Cycling challenge – 12 hours non-stop cycling on a spin bike (Walnuts leisure centre, Orpington, Kent |
| Indoor rowing challenge – Marathon distance row of 26 miles 285 yards in 4 hours 12 minutes |
| Step climbing – 15,000 vertical steps up The Gherkin(30 St Mary’s Axe, London) in 8 hours and St Paul’s Cathedral spiral steps 25 times in 6 hours 45 mins |
| Bell ringing (camponology ) challenge – 10,000 chimes of Prince Harry’s Jubilee Bell (St James Church, London) in 4 hours |
| Shallow water walking – 12,500 metres – 502 times walking the 25 metre length of swimming pool (David Lloyd clubs, Sidcup, Kent )in 8 hours |
| Steve Backley, OBE – 3 times Olympic medalist and former World record holder in the Javlin, now a successful entrepenaur |
| James Cracknell , OBE – 2 times Olympic Gold medalist in Rowing, adventurer and prospective politician |
| Dr Roger Barker – Professor of Neuroscience and Honourary consultant in Neurology at Cambridge University and Addenbrooke Hospital |
| Bear Gylls – Youngest person to have climbed Mount Everest and an adventurer and TV personality |
| Alex Flynn – Adventurer and person living with Parkinsons |
| Aligned to my lifestyle, outcome, performance and process goals plan |
| Outcome goals |
| Continue to consistantly reinvent and reinvigorate myself in my daily battle with the insidious symptoms of Parkinson’s disease, to minimise these |
| and the side effects of the medication I take. To optimise my quality of life and personal fulfilment by enhancing my knowledge on sports exercise, |
| nutrition and psychology and to be congruent with my values as set out in my mission statement |
| Performance goals – include to continue to follow, adapt evaluate and record my structured daily regime, aligned with my natural diurnal clockwise |
| circadian rhythms. This is broken down into quarterly quadrants which are aligned to the following cornerstones 1/ Mindset (including degree of |
| symptoms- cognitive), 2/ Exercise/Activity (including degree of symptoms – physical), 3/Nutrition and 4/Sleep and rest |
| 12 Midnight to 6 am – Sleep |
| 6 am to 12 Midday – Digestion, Nutrition and Exercise |
| 12 Midday to 6 pm – Nutrition, Power nap and intellectural stimulation (reading) |
| 6 pm to 12 Midnight – Nutrition, rest, relaxation and sleep |
| 7 am – 1 Sinemet Plus 25 mg/100 mg, 1 Sinemet Prolonged -Release 50 mg/200 mg and 1 Azilect 1 mg |
| 1 pm – 1 Sinemet Plus 25 mg/100 mg |
| 6 pm – 1 Sinemet Prolonged- Release 50 mg/200 mg |
| 10 pm – 1 Sinemet Prolonged -Release 50 mg/200 mg |
| No change in this medication for over 4 years |
| Stiffness, Bradykinesia (slowness of movement), Dyskinesia and Dystonia and unbalanced. Mood fluctuations and brain fog – All symptoms are minimal |
| and do not really impact on my quality of life, they are also irregular and unpredictable |
| Testamonials from Steve Backley , OBE and Professor Roger Barker on request |
