The Speech Symptom with Parkinson's: Apathy Towards Therapy
The most important part of dealing with any chronic illness, but more specifically Parkinson’s, is keeping up with the therapies. And like any therapy, it requires hard work. Speech therapy and physical therapy are no cures for the symptoms people with PD face but I am sure they offer improvement by way of speech and relaxing the muscles.
It really is very hard work. Therapy requires a determined attitude and the absolute belief that things will improve. Hard to have those things when you feel so down about having PD.
Parkinson's apathy & disinterest in therapy
For my father, I think the most impactful symptom is his apathy or disbelief that things will improve. I mean, he worked his butt off his whole life only to be hit with PD in his old age - I’d be feeling pretty bleak myself.
He just can’t see how the therapies would really make a difference. My father goes to speech therapy and physical therapy in person because the doctor has ordered it. But everyone knows the positive effects of the therapies do not last unless the patient works on them outside of their sessions.
The only way the improvement sticks is when the methods are continuously practiced at home. But when there is no audience, no speech therapist or physical therapist pushing him, when it’s just his family members, he lacks the drive to continuously practice.
Speech symptoms affect the whole family
This isn’t simply an issue he deals with alone. He is someone who needs to be heard and he likes to call my siblings and I about various tasks that need to be done or just to catch up. But whenever he talks or goes on about something educational, I can barely understand him. His speech is so slurred that only if I listen very closely, do I pick up a few words here and there, piecing together some idea of what he is talking about.
The worst is when I ask him to repeat himself and it comes out the same way. Then I ask him again and then a third time, at which point he gets so frustrated that he just stops trying. He loses the joy of the moment and says bye.
I ask my mother to be around as much as possible to translate since she is right next to him, whereas I am on the phone. But she goes to work and he hates the idea that he has to rely on someone to translate what he is saying - immigrant thing, I think.
Fearing speech changes in the future
I know somewhere down the line, in the distant or not-so-distant future, he will be unable to speak entirely. I dread the day when he will be unable to communicate his needs or wants. He is someone who prides himself in teaching his kids about religion, politics, anything under the sun. He is able to do it so well because he is so well-spoken.
I am a writer and while he doesn’t love that, I get it from him. He used to talk for hours about topics he felt passionate about. While I wish for him to push himself and see the light at the end of the short tunnel, I hope he also understands we feel his pain and sadness.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?