Transcript below
People with a Parkinson’s diagnosis tend to have been dissociated from their bodies and their emotions and feelings for a very long time [a recent science article found by one of our Facebook group members showed that people with a PD diagnosis actually feel emotions in different parts of their bodies, with different intensities, as compare to folks without a PD diagnosis]. This can make it hard for them to initially see clearly all the improvements that an intervention may be making - unless they meticulously track their symptoms as I recommend. However, the improvements may be much more obvious as observed by loved ones.
In looking for feedback from the first cohort of my Overcome Parkinson’s course, a spouse of one of the participants volunteered to talk to me about the results she has seen. The video [transcript below] is a recording of our wonderfully heartwarming conversation.
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Transcript
Lilian: So Sharon you are a spouse to one of the participants on my course.
How has [Clare’s journey] been to be on the sideline watching?
Sharon: It's been scary At times sad. I've just kind of watched her change so much from a very active, confident, busy woman to somebody who looked frightened a lot. She had this look on her face. I would see it come and I would try to talk about something to distract her, but she would be in it. I don't know what that means, but she would just be in this. Her body would change her look on her face was very different
Now I don't know what you're doing what you're doing with her, but I mean she's doing stuff. She wouldn't even leave the house. She wasn't even going out. She didn't feel comfortable. She was constantly worried about her medication when she had to take it. And, you know, I would say just bring it with you and, you know, we have to get you have to get out of the house now.
I mean, I'm at work and I come home and she's been to Home Depot and she got a new switch and fixed our garbage disposal. I mean, that's the old Claire.
Lilian: Hey, so she is coming closer to the old Claire again,
Sharon: And her face is clear. You know, it's like her. I haven't seen that scared look that I saw. I don't know how to describe it, just her posture would change, it would go in, and she would walk slower. It was like very carefully, you know, like everything seemed to be calculated, every move, and now she's just moving around, up on the ladder, hanging up Halloween lights, and you know, it's I don't know whatever it's doing, she's got to keep doing it because it's it's really wonderful.
Lilian: So if we take it from the start. How old was she when you figured out there was something wrong with her.
Sharon: Yeah about 10 years ago. I was 60 then and she was 62 So it's about 10 years ago and she was very freaked out about how she's going to be able to retire. And it was almost, it was manic. I mean, we would go for a walk and it would just always, all we talked about was retirement. And she was afraid, you know, how am I going to retire? Are we going to be able to live this?
They just were not, it wasn't necessary because we were okay. But it just got worse. And she just started having a tremor. And then before I know it, they're telling her she has Parkinson's, and she's in this world of medication, and she just kind of slipped away.
Lilian: So it was a very short period with symptoms before diagnosis?.
Sharon: It was actually, it was about a year, I would say. I think it was about a year from the very beginning to them actually diagnosing her cause they were centered. You know, the first person didn't think it was Parkinson's. She went on to somebody, center to somebody else and they just quickly watched the way you move and give you a diagnosis, and want you to start on all these pills. And she's very anti-medication, so she was, she resisted for a long time.
Lilian: So what did they tell her about her future?
Sharon: That it was progressive. They didn't tell her exactly where she would end up because they didn't know. I work with the elderly population, and I've seen people with Parkinson's taking so much medication and all the effects it has. And she just, she wasn't gonna go there.
Lilian: Then she spiraled worse and worse physically or what?
Sharon: Yeah, it was, she just kind of faded away. She was there, but she wasn't the same person. She was just 100 % focused on her disease, which she thought was a disease and trying to get away from it. So she was doing these intense exercises, every day. I mean, stuff, I couldn't even get on the floor and do what she did. Somebody have to pick me up. I mean, she was just going, going, going. She went to classes before COVID. Then she did everything online once COVID hit. She ended up with the spinal stenosis. I mean, she just beat her body and then was afraid that the Parkinson's was going to take over.
Lilian: Then she found a course here with me and you are the spouse and you should sort of suddenly pay some money for this. What's the process in your head about that?
Sharon: If we have money, that's where it's going to go, to take care of ourselves. That's what it's about. You can't take it with you and we don't need anything. You know, we live simple, we're happy, so we don't need anything. She needs to take care of herself. I think your one-on-one sessions have been incredible for her.
Lilian: The whole world thinks that Parkinson's is a progressive disease, and you want to take a course that says the opposite. How does that ring in your head?
Sharon: Oh, I'm all for it, I'm all for that. It didn't sit right with me from the beginning that it was Parkinson's. I don't even understand what Parkinson's, they give you a diagnosis. I think it's the medication that's giving them all the problems. because I watched clients, and every side effect of this medication, they exhibit.
Lilian: Has she discussed some of the content of the course with you?
Sharon: Oh yeah. She thinks I would benefit from releasing my traumas. I'm like, "what trauma?". She was, "Oh, you've got a ton of it”, I said but I'm you know I'm doing all right maybe I'll maybe somewhere down the road I'll think about it but it's just it would really be digging deep I'm all for it.
Lilian: So what have you seen here it's nearly half a year since we started. What have you seen that happened in the start where she didn't take one-on-one?
Sharon: Well, she was very eager for that class. And I listened and she did her homework. She was very serious about all that. But she would talk about it, talk it out, talk to me about it. I just totally support her 100 plus percent. I support this program that you're doing, and I love her coming back to being Clare, not that frightened look on her face and, you know, not worrying every second about her medication, what time it is, engaging in life more.
Lilian: Was it sort of stepwise, or how did that change come into her face and life. Was it a sudden change or was it some small, subtle changes, or what have you noticed?
Sharon: I think it wasn't sudden, it was just progressively, I saw with each class, with each session, I just saw a little more confidence building and the facial expression is… I see my spouse. It's not that other face, that's what I call it “that other face”. It was just a very scared look a lot, and I felt helpless. I didn't know what to do. She couldn't sit still and now she sits and reads and she went out to lunch. I was told you have to get out so she finally went out to lunch with a couple of friends and that's important as I still work.
Lilian: When you met her, was it 10-15 years ago, if she was herself then, how much have you got back, how close is she to coming back again?
Sharon: We got to factor in, we're older, so that slowed us down itself, so I don't know if you're going to get back to the way she was 20 years ago, because we're not that young again, but I see her She loves projects, She loves house projects. She loves to do things and she's starting to do that. So I'm seeing her going back to that person.
Lilian: Yeah, that's good. What should other Spouses around the world know about how it is to have Parkinson's, and how to support each other?
Sharon: It's really hard when it’s when people trust the medical field only, but I really think there's a place for it. But you got to look outside and you have to question. You have to really get involved. I've done that with her. She has a neurologist and next appointment, I'm going with her. I want to be there because it's just a ridiculous setup the way they do it and she used to get so intimidated and stressed before she went. We've been talking about it and I said you've got nothing to be stressed about here, nothing You don't owe her anything at all. I said you go in there and also just tell her you're okay.
I mean Clares's cutting back on the meds slowly. Anything you tell them they just they want to, if you say I didn't sleep well last night, well, you need more medication, and that's just not her path.
You need to listen to your spouse. You need to be willing to help them, you know, and support them in alternative stuff, finding other ways and seeing what's out there.
Lilian: People are starting to go away from saying alternative and saying natural instead because it's where we come from. It's a natural way of becoming better.
Sharon: My mother used to make her own natural remedies when we were sick. She'd make some kind of thing to put on your chest. She would mix it. She'd pick these things from, herbs and stuff outside if you had a cut if you had so my mother used to do stuff like that. But we've just gotten to the point where if we want a quick fix. We think it's a quick fix. But these medicines boy, they've got some terrible side effects.
Lilian: So the idea that it's actually stress in all its forms, that's how I help people to break free of the old ideas. What do you think about that?
Sharon: Oh, I think that's great. I think that's great. I tend to stress myself. So I know how it can hit me in the gut. And I'm listening to everything she's telling me and I'm, incorporating everything I can into my meditations and I'm doing as much as I can.
Lilian: So you also have had a little benefit from it?
Sharon: Oh, absolutely. Yes. So thank you.
Lilian: It sounds good.
“Take the course and start to believe in your own healing process.”
The Overcome Parkinson’s course has been like a lifeline dropped into my lap, providing a rope onto which I have pulled myself toward better health.
I have learned to prioritize my health, how to reduce stress in my life, and live life at a pace which allows my body and mind to heal. The changes I have experienced in the past few months have been nothing short of amazing.
If you want to improve your health and get relief from Parkinson's symptoms, I encourage you to explore this avenue and sign up for the next season of Lilian's course.
She also offers individual therapy sessions which have personalized the journey for me and further deepened my healing experience.Clare Farley, Participant summer 2024
