|Posted by parkies on April 10, 2017 at 3:15 PM|
This World Parkinson’s Awareness Day 11th of April 2017 will mark 200 years that Parkinson’s has been a recognized health condition. A great deal more public awareness is needed in the community and in the medical profession.
Parkinson’s disease is the second most common neurodegenerative disease. The number of people living with Parkinson’s is forecast to double by 2030, that will be 20 million. With such an upsurge in numbers it is time to start planning what we need now.
Firstly, we need more education at the time of diagnosis. Often we are given this life-changing diagnosis, along with a script, and sent off to digest this information. Education, counselling or information on support networks at the time of diagnosis would be empowering.
We need better access to Neurologists. The typical waiting time to see a neurologist is three months and longer for a Movement Disorder Specialist. In remote areas and even outer suburbs of large cities, some people are not able to see a Neurologist and remain under the care of their local GP. Access to a Parkinson’s disease Nurse Specialist in the community would go a long way to bridge this gap between specialist and patient but they are few and far between.
We need improved education and training for all hospital staff on issues affecting the patient with PD. One of the common issues PD patients have in hospital is timely access to medication. Medication given too early can cause dyskinesias and given too late can result in debilitating “off” times.
All the millions and millions of dollars spent on drug development and research and still the gold standard medication, Levodopa is 50-years-old and the newer medications can have severe side effects that can and have ruined lives. Parkinson’s is different from person to person, it is very individual, and one medication does not suit all.
Parkinson’s, a disease for older people? This is the common preconception of PD and yet there are many of us diagnosed under the age of 60. We face particular challenges, including loss of income when we might still be providing for children, paying a mortgage and still dreaming of what the future might hold. What happens when we can no longer cope? Suitable accommodation for young onset people with Parkinson’s is needed. An old people's home is not the place for a 60 year old.
People living with Pd find that actions that were once taken for granted, suddenly not capable of easily and more…how to turn in bed, how to plan a household schedule. Keeping up with conversations. How strange the feeling is when your hands are not doing what your brain says. Loss of agility, confidence eroded by anxiety....
But.... through all of this though, there is hope. There has to be. I have spoken of today affects all of us with this disease. These are common issues worldwide. But without hope, there is nothing. People within the Parkinson’s community, continually inspire each other a quote from a famous Parkie, “the longer I have this condition and the worse my symptoms get, the more determined and positive I become.”
Categories: Radio Parkies blog