Kristina Mueller, 62, is an economist, but has not worked for five years. Her husband Kasper is 62 and is an engineer working in a brewery. Their two children, Anton (28) and Fredrik (26) are at university where they live. Kristina and Kasper own their own house, in the centre of a mid-sized town.
When Mrs Mueller was 48 she developed her first Parkinson’s disease motor symptom: left-sided hypokinesia. For some years prior to this symptom, she had experienced problems with depression and anxiety, which may have been related to Parkinson’s. From the first motor symptom until diagnosis was confirmed, she had repeated visits to various doctors over the course of 18 months.
She was started on a treatment regime of Selegiline 10 mg once daily and levodopa/benserazide 300 mg daily, with excellent results. Cabergoline, 4 mg daily, was added one month later.
For five years this medication regime worked effectively for Mrs Mueller, with only a few minor changes being made.
Seven years ago motor fluctuations appeared. This was initially “off” fluctuations that over two to three years were well compensated by increasing the number of levodopa doses and a higher dose dopamine agonist. However, for five years she has also had dyskinesias that are often rather intense.
Five years ago, on peroral therapy, she experienced very fast and unpredictable fluctuations in her motor status and spent approximately four hours of her waking day “off” and five hours “on” with dyskinesias.
The “off” periods were very pronounced with extreme hypokinesia; she could not walk at all and could not use her hands. During her “off” periods she also had pronounced anxiety and depressive thoughts. Dyskinesias were often very pronounced when “on” clearly affecting quality of life.
Mrs Mueller was very afraid of her “off” periods and often over-medicated to compensate, resulting in dyskinesias that became even more pronounced.
At this stage, her husband had to reduce working by 50% to help his wife. In addition, a nurse team came into the home to help Mrs Mueller in the early mornings and evenings. She spent five weeks per year in neurology wards (acute hospitals and rehabilitation clinics) and had a four week temporary stay in a nursing home. Her husband, who also suffered from ill health, was finding it difficult to manage the responsibility of his wife and work. Discussions had therefore begun about admitting her more often to nursing home care.
At this time Mrs Mueller was referred for the first time to the university hospital neurology department. The neurologist suggested an apomorphine pump and she was admitted to the ward, where she spent two weeks starting the subcutaneous apomorphine infusion therapy. Upon discharge from hospital, she had 4 mg/h apomorphine infusion and bolus dose of 3 mg on demand. Additionally she had totally 450 mg levodopa/carbidopa per day. The apomorphine treatment initially led to a pronounced improvement in her status. “Off” time was reduced to half an hour per day; dyskinesias also improved significantly and her psychiatric problems were reduced. Mrs Mueller was able to return to full time work and no hospital stays were necessary. The nurse team came into the home morning and evening to help with pump and other practicalities. Nursing home admittance was not discussed anymore.
However, after being on apomorphine for eight months, Mrs Mueller began experiencing increasing problems with a skin reaction i.e. nodules at the places where apomorphine was infused. She tried to solve this by changing the infusion place frequently and even developed her own system of tubing, enabling simultaneous infusion to several different subcutaneous locations, but this did not solve the problem. The skin reaction increased in intensity and at the same time, the anti-Parkinson effect of the apomorphine decreased. The fluctuations again increased and the “off” time increased to three and a half hours per day.
Levodopa/carbidopa gel intraduodenal pump therapy was newly released on to the market at this time. Mrs Mueller was admitted again to the university hospital and the treatment changed from apomorphine infusion to levodopa/carbidopa intraduodenal infusion. This change in treatment worked very well. The effect of levodopa/carbidopa infusion was clearly stronger than that of apomorphine and there were no side effects or complications. The “off” periods virtually disappeared and the dyskinesias continuously improved. All other medications were terminated.
After three and a half years on levodopa/carbidopa infusion, Mrs Mueller is still experiencing excellent effects. She has virtually no “off” periods, i.e. only once or twice per week, and for a few minutes she also has no dyskinesias and does not experience depression or anxiety. She cares for herself and nurse home visits have been unnecessary during the last three years. She attends three monthly outpatient clinics at the university hospital and during the last three years has been admitted to the neurology ward once, for five days.
Mrs Mueller has been able to continue working full-time, retiring next year due to age. There has been no need for nursing home admittance and a dramatic improvement of health-related quality of life according to the PDQ-39 registrations at the university neurology department.
(This report is based on a real life patient’s case history, with some details being modified.)
