People with Parkinson’s disease struggle with movement, swallowing, sleeping, depression, and even dementia. It is a progressive, incurable disease and can strike people when young (even in their 20s) but usually hits people in their 60s. There are medications that may help for a time. There is brain surgery that can temporarily relieve some. But until there is a cure, people must live with what this relentless disease does to their once healthy bodies.
Our current assisted living and nursing home facilities make living with Parkinson’s more difficult rather than less. Some examples:
- Jenny was checked regularly in her assisted living facility to see how her Parkinson’s disease was affecting her. “She’s doing great,” noted the caregiver in note after note. Why? Because she had no tremor. The fact that she was frozen in bed was not something the caregiver realized was a Parkinson’s symptom.
- George was doing well in spite of Parkinson’s disease, walking across his room. Suddenly he was “off.” His medication stopped working just like that. But medications weren’t scheduled to be delivered to his room for another hour and a half. How was George going to live through the rest of that day?
- Maria was walking down the long hallway of her retirement home. Parkinson’s caused her to slowly shuffle. But then she took one step, then another and another faster and faster – until she smashed into the hallway wall and tumbled to the floor. Long hallways make this scenario more likely than open spaces.
- One day John was coherent and engaged in life. The next day, signs of Parkinson’s related dementia were obvious. But his assisted living facility provided the same level of care, no matter that his condition – and needs – changed from day to day.
These are common experiences of people with mid- to late-stage Parkinson’s disease. The Parkinson’s Project will change that.