So, why travel when the patient has to deal with all these obstacles?
On the surface, “traveling with Parkinson’s” sounds like a story about the Parkinsons family- but Parkinson’s is also an incurable disease that wreaks havoc on any family who has a loved one living with it.
The symptoms are different for every patient and can include uncontrollable tremors and shaking, an inability to move easily- or sometimes at all. Patients stop being able to express feelings through facial expressions, voices can become soft and difficult to hear, choking at meals becomes common and a deep fatigue occurs at times on most days.
So, why travel when the patient has to deal with all these obstacles?
Most people with Parkinson’s stay home and suffer their symptoms away from the critical public eye. Only their families and caregivers know the extent of how the illness impacts them. I know the ‘public eye’ can be a scary and unwelcome place for anyone- with or without a disease that shows. Why travel and subject oneself and one’s family to that potential scrutiny and judgment?
I get it.
I can answer those questions by asking the questions most relevant to me, as the caregiver to my husband in his 19th year of living with Parkinson’s.
What happens when a person becomes homebound over many years?
What gets lost in the humanity and soul of a person who lives as if their condition makes them unfit for the public eye?
Is it really necessary to make someone’s life smaller because they live with a disease that is not contagious or dangerous to anyone except themselves?
Who are we really trying to protect and from what?
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