Dan Freedman
Forum Replies Created
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It is a “disease” because it makes things less easy in life. “Dis” “ease”. Kind of like the word discourage (remove one’s courage), or discover (uncover, or make clear, something). To be a disease, there does not have to be a pathogen or infection.
As to what causes PD, I think that at best, we can say that certain things such as pesticides or genetic tendencies influence one’s likelihood of getting this disease. If alpha-synuclein turns out to be the pathogen that is responsible for the disease (and this is not clear yet), then it still says nothing about why the alpha-synuclein in our bodies becomes Mal-formed.
On the bright side, many diseases have been cured without knowing anything about their causes. Many antibiotics were used to cure diseases before humans knew there were bacteria, for example.
Dan
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I had some apathy. Starting levodopa/carbidopa therapy (in my case, using Rytary) has helped a lot. As far as I know, dopamine is involved in establishing the feeling of anticipating a future reward, and a lack of dopamine means that this linkage is either reduced of missing. My understanding is that this exhibits itself as apathy, broadly defined as “being less interested in things one used to enjoy doing”. In my case, putting extra dopamine into my brain has helped with apathy. But of course, there is such a thing as “too much of a good thing”, so it’s all about experimenting with meds and lifestyle.
Bottom line: We must each be our own doctors, because PD symptoms don’t start and stop with shaking or stiffness or constipation. There are these other, subtle things such as “energy level”, “mood”, and so on. And the words we use to convey feelings or changes to our doctors are very clumsy.
I suggest that if you aren’t already doing so, you tell your doctor that you intend to experiment with dosages and drugs, to find out whether your situation can be improved. Tell her that you’d like her help through this experiment, but you are not asking her permission. Then ask if she is willing to help you.
Just a thought.
— Dan
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For me, it is the recognition that my carbidopa/levidopa medications have effects on my moods. While it might sound nice to be able to dial oneself up or down in terms of mood, it does beg the question (within me at least) about who I truly am. I try to observe myself and my mental reaction to medication, but there is always a question: Who is making this decision (whatever it is)? Me, or the meds.
Dan
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I believe we tell ourselves stories, or make agreements with ourselves, about why things happen in our lives. With enough repetition, they become “truth” for us, even if they have no basis in fact. For something so important to us, we prefer a credible story, rather than no story at all.
Sometimes this might be dangerous, leading us to make important decisions on the basis of some unreal agreement. Other times, it doesn’t matter at all, and does no harm.
My suggestion: Become more comfortable with “I don’t know, and may never know, what brought me here, but I know I can chart a course for myself regardless, and enjoy the journey, even if my ultimate course is not the one I choose.”
Dan
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Every few weeks, I seem to have 3 – 4 days that are worse (for symptoms) than the rest of the month. I jokingly call it my “Parky Period”.
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I learned that tears contain biomarkers that can detect PD. I’m hopeful that this means PD can be detected years before symptoms emerge, which may help people protect their own neurons via exercise, etc., and lengthen the time between this kind of diagnosis and the emergence of symptoms.
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Everyone seems to react differently, not just to the disease, but to the medications and their inevitable side effects. I think it is important to recognize that you may well have a neurologist, a family physician, and maybe some others, but … you are your own doctor. Only you can directly assess the nuances of the disease and the meds, especially non motor symptoms such as apathy, lack of motivation, depression, and so on. The disease, and also the meds, affect our mind as much as our body. If you haven’t already done so, it might be good to acquire a second neurologist, for a second opinion. One way to do this “on the cheap” is to volunteer for a clinical trial of some kind. You’ll be well poked and prodded, and it won’t cost any money (only some time), and you’ll learn a lot from all the researchers involved with your study.
I’m not sure if this will be helpful to you, but it has been helpful to me. I treat PD as a new partner in life, or a new room mate. One I cannot get rid of, but we can accommodate each other. When during the day/week/month do I want my best times to be? If I’m getting up in front of people, should I slightly over-medicate to reduce shaking, or slightly under-medicate to increase clarity of thought? These are the kinds of realities that PD patients face, and both you and I are among them.
You ask if you can reasonably expect to continue with your profession? I’d say: do it as long as it feels worth doing, but have a backup plan in place for what to do it you decide you can’t continue working. The stress of worrying about “I can’t continue but I also can’t stop” will make all of life worse, including PD, since stress brings out the symptoms.
Final thought: There is lots of research happening now. When I was diagnosed 3 1/2 years ago, I felt that within 5 – 10 years, symptom progression would likely be stopped. I still believe that. But on this forum, I bet there are people who believed that 5 – 10 years ago, and yet here we still are. At best, we’re all going to have to deal with the same kind of uncertainty that you are expressing in your post, for a while longer.
Dan