Didi Luku Ronald
I became involved in the PDFU when my Dad (Cyprian Kujuna) began to exhibit PD symptoms. He probably had PD by the time he was 48, a relatively young age for PD. He began experiencing left hand tremors, and would often feel weak, stiff and not well. He sometimes had trouble walking. My Mom (Lucy Ndebesa) and I didn’t know what was wrong. He would go through periods when he seemed depressed, and he had always been a jolly person. He had no outward signs of infection. He also didn’t understand what was happening to him. We became alarmed when he said he could no longer do his job and needed to retire. This was 5 years ago.
He was the Rehabilitation officer in our District which required him to move from village to village to reach the disabled. He worked with a team of doctors who would offer rehab care for those in need. The most severe cases would be referred to clinics and/or hospital. He began having trouble walking, and couldn’t keep up.
My Dad is now 64 and has had PD for 10 years. We convinced him to go to see a doctor at the main Uganda hospital to find out what was wrong. Dad was lucky. The doctor referred him to one of the few neurologists in Uganda. This neurologist immediately suspected Parkinson’s - by this time my Dad was exhibiting classic PD symptoms. The neurologist prescribed Levodopa and advised my Dad to exercise and eat a healthy, balanced diet.
The neurologist informed us that PD is progressive and Dad was going to need more help over time. Mom and I became his caretakers. She does the cooking, I wash his clothes. And we do our best to keep him socially active. With a personal stake in Parkinson’s and PD treatment, I became active in the PD Foundation of Uganda. I began to read up on PD, so I could help my Dad and so I could help my Mom cope with his PD. It was obvious that both Mom and I felt personal strain as caretakers, not knowing if a PD cure exists or what my Dad might expect in future, or even if there was to be a future.
I discovered the Uganda government does little for PD. Most PD patients are on their own. While Uganda does provide limited financial aid for PD patients, this financial aid hardly covers PD medicine costs. Financial aid generally ranges from $150 – $200 a year. This compares to about $2,000 for a recommended year’s worth of Levadopa (3 to 6 tablets a day, 365 days, for many years).
Thus, most PD patients are way under-medicated. Moreover, there are few resource materials available how to “live and care for” PwPs or how to advise family members and caretakers on how best to help someone with PD.