Danny

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

Equality of care

I am used to having everything around me when supporting people with Parkinsons . I simply make a referral press a button and it all just happens. A person with Parkinsons comes into clinic with a speech problem they get seen by the SALT team. Poor mobility and they get physiotherapy. Continence issues they are reviewed by the continence nurses. Sex and relationship issues? cognitive and behaviour issues ? anxiety and stress? pain? then I make the referral press a button and it all just happens. What happens in countries where this is not available? or even other services in the same country which is under funded or simply consists of a GP and little else?. I spent time last year out in Mexico working with an excellent team of Consultant Neurologists in Mexico City and Monterey City . I had been invited over as a PDNS to teach other neurologists from all over South America and nurses who had never been taught by a nurse in the field of Parkinsons . I only speak English sadly and most of the Team in Mexico speak mostly Spanish except the lead consultants. But we had one thing in common and that’s trying to improve people lives who have been diagnosed with Parkinsons. The estimated population in Mexico living with Parkinsons is 250000 people of all ages. There are no such thing as PDNS but a great interest within the nursing community to take on the role. The determination to care for their people with very few resources was obvious. If the PWP has no money they get just minimal treatment if any treatment at all. Many of the nurses only tools to give care was to care and just talk therapy. I taught at 3 different institutes and in a restaurant where we met for a fantastic Mexican breakfast. The team there had come from all over South America to join the Mexican team to learn about the role of the PDNS and how it would fit into their services to help support the consultants in caring for their patients. What became evident during this trip was the need for education from diagnosis. For the PWP their families but most of al the professionals looking after the PWP. Empowerment of the patient with very little resources available was more evident in Mexico simply because of the lack of resources available to them. Educating the families to live with their Parkinsons was often al they had to offer. It made me wonder while I was there whether we lack this drive simply because we have all the resources at out finger tips and therefore take the control and choices away from the PWP. The nurses were humbled by my lectures and I was humbled by their want to learn and care with just the basics.