Survivor Stories: A dedicated woman heading towards her goal of getting rid of her Parkinon's Diagnosis
Part 1 of my interview with Patti
Lilian has been collecting survivor stories, interviewing people who have reduced or removed symptoms, recovered, or got better, with the type of chronic illness diagnoses that the medical establishment say you can only get worse from.
I have been listening to these interviews, over on Lilian’s YouTube channel, both with her own clients and with others who have independently healed themselves.
I suggested to Lilian that it was well worth serializing these on her substack too, to spread the good news and the hope, and the stories of what did and did not work for folks. This is the first experiment with this style of post.
Lilian: When I met Patti she was in a terrible state with wild dyskinesia and extreme tremor. This is the typical situation for a person on long-term Parkison’s medications.
With a basis of lots of stress, the medication gives people a few hours of rest from symptoms initially, and then symptoms, as well as wild side effects, come back. This woman is extremely open-minded and aware of the effect stress has on her. She is journaling a lot to try to understand what is going on, and I give her more tools to facilitate her journey. Of course, you can become better.
It was about nine years ago I was having full body shaking so my doctor sent me to a neurologist - big mistake because they always want to diagnose you with some little label. So they told me that I had FND, a functional movement disorder, and I had Parkinson's. They didn't know what kind of Parkinson's because mine had started very differently. It usually starts with your hand.
So what happened was they gave me all this medicine and gave me a big book this thick. I immediately in the lobby of the hospital threw the book in the garbage can and I became very depressed because my mother had Parkinson's and then she had Lewy body [a dementia disease, often associated with Parkinson’s] so it was very serious, and I thought oh no I'm gonna rot away my brain. So I decided at that time that I was going to try to look at the symptoms that I have individually and treat the symptoms.
So I started with my diet, and then I started also looking for like a holistic neurologist, which is impossible. I mean, I ended up having to go to Stanford and UC, which are prominent medical schools, but the only thing that seemed to be working was the essential oils, changing my diet, more doing different types of exercise.
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I went online and looked for years. So even one doctor had given me a prescription of the medication and it said to start with three pills in the morning three pills in the afternoon and three pills... I mean that was crazy because it raised my dopamine so quickly that made me sick. I mean I think they just didn't know what to do you know and I joined all these support groups, and everybody was into taking all these different medicines and I tried a little bit of them but my body just told me it's very sensitive.
At one time I think I was on 20 different pills and I'd try them one day and then get rid of them and go back to my essential oils. So what happened was I found you online and you made totally good sense to me that I could remove the things that were causing me to be upset, that were triggers from my childhood and I just started getting better and better.
Remember I used to have such terrible dyskinesia [side effect of Parkinson's medication], like I didn't have any dyskinesia yesterday. Some days I do and I know when I'm going to have it when I'm pushing myself but you kind of gave me answers and that one of the big things was I was terrified.
I was really scared of having it because of what happened to my mother, and seeing what happens to people in the support groups, and I'm not so much afraid of it anymore because I feel like I have ways of dealing with it that I didn't have before, but it's been about nine years now that I've had it, and I just saw my neurologist last week and she said this is amazing you're not getting worse.
Because I was unbelievably sick when I first got diagnosed. I mean, I spent a lot of time in bed. I hardly could work, just not very functional. So I did a lot of mindfulness classes.
Having that label put on you and then having them hand you a big book with all the medicine that you can take, that's frightening you feel alone, but I feel like if I have you helping me then I'm not so alone and I can ask you questions even in the middle of my night or my night is your daytime, so it's nice to be able to ask you a question.
When I was coming off the medicine and the dyskinesia was as bad as the Parkinson's, you know, it was so intense. Well, like yesterday, I had hardly any symptoms. So [symptoms] was maybe like a two out of ten. Who knows what today will be? And that's another thing I've learned is that every day is different. You know, that's something you've got to accept.
It's not always the same, even though you take the same amount of medicine. I mean, because when I'm walking and I freeze up and I can't walk, that used to really scare me. So that [stress] made the symptoms worse.
But remember, we've had many sessions about that and getting back to walking. I like that we have figured out, what is causing the fear, like the cabinet in the hallway [boyfriend beating her next to a cabinet > caused freeze episodes 4 decades later].
It's mind-blowing to pick apart and figure out what's causing the reaction. I don't have that so much when I go out of the house. We went to the mall yesterday to do something and I realized I had been walking and holding my cane up because it was in the way. I don't need the cane anymore.
And then when we came home, I was able to walk through my very crowded artistic house and not have the freezing, and if I do have it now it's sort of like “Oh whatever, and I'll just get going” but I'm having it less and less the more I'm empathetic [towards myself].
Well like I can have a dinner party Saturday night. I haven't had a dinner party in years. I've just started having them so I can see old friends. I can go and do more things. I can go to a museum and not feel scared, afraid ashamed, or worried.
My life has opened up and one of the things I like to do is set goals because goals make you make more dopamine. So my goal is to get back [regarding health] to where I was before I was diagnosed and be able to walk more and do more things, participate in art shows, and do more things that I want to do.
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