Posted by: PD Warrior | September 29, 2007

Questions for the audience…

One of the main ideas I had when starting this blog, was to spread the word about Parkinson’s Disease. I have posted different blurbs about a lot of different subjects, hopefully directing people in the direction they needed to go in order to obtain the knowledge they needed. The question is, have I succeeded? The answer is…I have no idea. I wracked my brain the other day, trying to figure that out, and then suddenly I realized I was trying to answer the wrong question. What I should have been asking myself is “how can I improve the information I am providing?”

The answer is simple, and it was right here in this blog, under my very nose in a post linking an interview exchange with Kate Kelsall from Shake Rattle and Roll. The question I should be asking, is what do the readers want to know?

So, readers, what do you want to know? (Please remember, my expertise lies solely in the fact that I have PD myself. I do not have “the answer” for everything. I can only tell you how things have affected me, or how I have dealt with things.)

You can ask in one of 2 ways:

  1. post your question in a reply to this post
  2. email your questions to me at joralph@gmail.com

So, ask away…

I would also like to invite any of my readers who may have some experience or suggestions to also answer any questions that get posted – remember, with PD there is often more than one correct answer – what works for one person might not work for the next, and vice versa.

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Responses

  1. For me, at least, you’re doing just what I want you to do, and that’s being yourself, writing about what interests you and what you need to get out of your system. I want to feel like I’m not in this mess alone, and reading and writing about it helps me cope. Just tell it like it is, and I’ll continue to be a loyal reader.

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  2. Thanks for the support, DB. You are definitely not in this mess alone. I entered this post mostly out of a feeling of guilt. I started this site in an effort to “spread the word” about PD, intending to keep my posts positive and knowledgeable. Yet, reading back through some of them, I seem to have spent a lot of time venting.

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  3. Have you ever pondered over the different ways that Patients were first told they had PD? I certainly have & feel that for myself it was sort of cold, hard fact sort of thing with no explanation; for one that hardly ever heard the disease mentioned I was too stunned to ask much. Though I quite by accident read a small article about it looking up a certain medication I had been given, but ofcourse that did not pretain to me. Oh NO! I do think a lot could improve that personal part of the diagnoses. Love reading your daily articles, you are a very good writer, not fiction but the truth, keep it up & thank you.

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  4. Deeann, I have pondered that question may times, both as a PWP, and as a RN. I didn’t have too much of a problem with the doctor that gave me the diagnosis, it was the ones that I went to for over a year that made me mad. I had a very visible tremor, problems with balance, decreased strength and coordination on my left side…all very obvious symptoms of PD, yet the first group of doctors I went to said they couldn’t find anything, and that I couldn’t possibly have PD because of my age. The symptoms became steadily worse, and I switched to a different group of neurologist. The doctor there examined me for over 2 hours, then he read all the reports from the first set of MD’s, and shook his head. We talked for another hour about PD, because that, without a doubt was what everything pointed to. He answered all my questions, he answered all of my wife’s questions, started me on meds, and here I am. I still have some visible symptoms, but they are a pretty much under control.

    My next day at work, I had a patient admitted to my facility that had been diagnosed with PD almost 6 months earlier. The patient and his wife asked my if I was familiar with Parkinson’s. It seems his doctor examined him, told him he had PD then left the office without discussing anything. A few moments later his nurse came back into the room, handed them a prescription and said “the doctor would like to see you again in 6 moth’s.”

    So, there I was, newly diagnosed with PD myself, answering other peoples questions about the disease, explaining to them that there is no cure, and telling them how the disease progresses and what to expect in the future – all with a straight face.

    Hope this helps. Thanks for reading my blog.

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  5. i think that what i am most interested in is how different persons living with parkinson’s react to the meds and outside influences affect a person’s attitude, well-being and mood. first off, we must convey that pd is a ‘snowflake’ disease= that no two people are ever the same: in their reaction to the medicine, how much or how little they have had to eat, how much or how little they have slept, what the weather is like or just how many of these very powerful drugs that we are ingesting or injecting into our bodies are affecting us at any one given point in our lives. none of us progress at the same rate, our symptoms make their appearance at different times in our progression and the side effects of how well or not we tolerate our drugs all impact our daily life. i take 40 pills a day just to get by and not become a philodendron and now it is becoming quite obvious that my teeth are falling out of my head as each prescription makes me drool or gives me dry mouth or something in between.
    also, it blows my mind that Type A, hard working, focused, over-achievers are the most likely to develop early-onset pd (not that i am any of those things), but also ones who can take the disease and find something hidden deep within themselves that they never knew was there. Writing, art, photography, crafts and all of these creative muses seem to surface and would have been left undiscovered (who knows) if it were not for this damn disease. so am i crazy to see it as both a hated adversary and also a blessing in disguise?

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