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Topic Thinking about P.D. (another muse) Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2011.08.07 00:36
Years ago Parkinson's Disease was considered a disease of old age. To some extent it still is but that is changing as more "young on set" patients are diagnosed yearly. With that being the case and with life expectancy as a whole extended or people living longer We are seeing much more the effects of this disease and side effects of the medical management of Parkinson's Disease.

Question's of sleeping, dyskinesia's, dystonia's, cognitive issues, things once chalked up to old age or separate disorders are surfacing in younger patients. Years ago when someone in their mid 60's or later was diagnosed, sadly with normal life expectancy to mid 70's not much was done or attention paid to complaints. So if shortness of breath occurred or blood pressure problems Parkinson's Disease wasn't connected to or thought to be a contributing cause. Life with Parkinson's Disease was rare longer than 10 years or so. Medicines were used with little thought to side effects of long term drug therapy. Now We are living 20, 25 and 30 years or more after diagnosis and many problems thought not to relate to Parkinson's Disease arise. We are the cutting edge, the teachers and have to get the medical field to listen to Us and learn from Us. They must begin to pay attention to web sites to patients and caregivers! They must learn to stop and listen to what we tell them. To ponder to be open to other ideas and not say well I've never heard that.

We must be teachers about this disease and Doctors in this field must be willing to be students again and learn what we're showing them. We need Doctors in partnership with Us their patients working together for quality of life not a Doctor for joints and one for the heart and one for the lungs, another for balance. By raising questions and discussing among patients and caregivers/partners, using commonsense and including our underlying disease We can begin to discover new ways and ideas on how to treat these newly appearing symptoms and patients as a whole. Not fracturing treatment out to this specialized field and another ending up with the right hand not knowing what the left is doing.

To some questions, many in fact there simply is as of now no answer. However We must keep asking them and not take I don't know for an answer. Many times it is posted on sites like this "I asked the Doctor and they said they didn't know" stunned and shocked posters, People who they trust with their care don't know?

In a sense We are like the film Awakenings. That film was about L-Dopa and the first usage in treating Parkinsonism. It was all new, all unknown. Now We're living longer, getting the disease earlier, all new, all uncharted territory. Problems are arising, hitches in Our get-a-longs, glitches in medication over time. We patients and caregivers/partners have to keep changing and adapting our lives and surroundings and so the Medical field must also adapt and change, keeping current with Us. Most of the time I end My posts with a hang in there, sometimes if a problem is brought up that is new or tricky I'll end with a keep posting there is a lot of knowledge here and we'll help You make sense of what's happening. In the end after my long winded post here that's what we have to do....keep posting....keep figuring out what's going on. Discussing it, looking it over from all sides.....the conventional view of medicine doesn't always look and see. They will look and then look it up, check what the books have to say about it. But that doesn't work now for Us, we're writing the book every day. Everyday We live past the years subject a or b lived in those books puts us and our condition in uncharted territory. So I'll end tonight with keep posting, there's a lot of knowledge here and we'll help figure it out for each other.

By karolinakitty On 2011.08.07 11:46
Well said my friend...well said!!!!!!!

Everyday that produces another, we are in a constant search for that infamous knowledge. You are so right....we MUST teach others for the medical community puts us all in the same basket and contributes all symptoms to age. If it is age, then why are some of the younger Pders on this board as far in progression as those in their late 60's and 70's......especially those who don't have, nor did they have medical issues prior to diagnosis of PD. If researchers and doctors stopped to think a minute that book would be abolished and a new one would take it's place.......the patient and caregiver would actually be listened to...

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