I know everyone is intrigued by my not taking meds, but I now wish I had never uttered those words to anyone. I guess I got caught up in the moment when I was shouting from the rooftops.
I am considering returning permanently to my meds and would like it if no one would mention my stopping again. I hope this doesn't sound harsh, I don't mean for it to sound that way. I just have
great fears about anyone outside the PD community discovering the fact that I ever stopped at all.
On to the topic at hand:
I feel that change needs to begin in the clinic setting, and I know this would not be an easy task to achieve.
Peggy, has great points in your reply.
Question: Why are we, as a patient group not categorized…as time passes the PWP may change category, where the PWP is at diagnosis is certainly not where the PWP would be five years later:
Categories would include: I believe Peggy called this a Statistical Formula
1) slow progression with tremor,
2) rapid progression with tremor,
3) #1 without tremor,
4) #2 without tremor,
5) with dynkinesia,
6) with dystonia,
7) with both 3 and 4.
Secondly, why are therapies not trialed/tested by these categories? And there may be other combinations I have not thought of.
I would be at #1.
So, if NTN data was analyzed using these categories, would the analytical results have been different?
Why was UPDRS the ONLY factor examined in the NTN trial? Why?
In a surgical trial, is it possible that the neurosurgeon simply by skill or by luck hit the right spot in the brain?
If this is even a possibility, why is this not examined when the data is analyzed?
Quote:
Here are some areas (in my opinion) that we need to look at as possible areas of concern when working with trial design or endpoint formulation:
1. Add a diet diary. Not everyone has a proteinor dairy product problem interferring with L-dopa absorption, but it really does make a difference in performance efficacy according to what is eaten. (Grapefruit, chese, and other foods high in tyramine are are often the culprits)
2. Educate trial volunteers about changes in medication regimens and even supplements added to their regular regime. It’s not just changes in PD drugs that can affect our outcomes, but ALL meds (I don’t think this is always clear)
3. Note that emotional swings and stressors can really alter individual trial evaluation outcomes. Just a few questions asked at each follow-up visit as to the participant’s well-being could provide important and relevant information. This doesn’t have to be something as radical as a divorce, family death or injury, but reporting on a scale daily as to the trial participants' well-being would add validity to the assessment scores.
4. As medication reductions are attempted, it is also imperative that trial participants’ emotional well-being be charted. Stopping PD meds abruptly can be devastating to volunteers, often causing severe depression (a proven fact). To a lesser degree, cutting back medications in trials like these is not always clean-cut across the board - again, it's an individualized thing. Many trials do a neuropsychological evaluation before treatment intervention or when screening participants, then never again.
5. Creation of an individualized statistical formula on PD progression – I believe this is doable. Have a statistician create a formula for each participant based on how rapidly symptom progression had been historically and compare that to current routine evaluation visits.
6. Be aware and keep records on particiants' sleep patterns. I cannot emphasize what a difference proper sleep has on most PWP's symptoms.
And that concludes my epistle. The brains of people with Parkinson's are not as predictable as an orthopedic study on kneecaps. I am anxious to read your comments.
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Regarding the above that I have quoted from Peggy's reply:
For NTN we had a diary we were required to complete for the 3-days prior to each quarterly evaluation. This diary did not address mood, illness or any other potential factor that may have had a impact on how well our meds worked or how our symptoms manifested themselves during those three days and there was no questionnaire on clinic day that inquired about illness, injury or any other potential factor that may have had a impact on how well our meds worked or how our symptoms manifested themselves over the prior three months. The diary only address when carbidopa/levodopa was taken and whether dyskinesia was present at any time as well as "on" and "off"
Matter of fact, the only clinic I have ever been too that required a “how have you been feeling” questionnaire to be completed at each visit was Univ of Maryland, but then Dr. Shulman is the PD community leader in quality of life and studies this daily.
I had forgotten this, but when I was searching for how to spell Dr. Z's last name for the who I am post below, I stumbled upon this study.
(July 18, 2007) -- (
http://hscweb3.hsc.usf.edu/health/now/?p=185)
The Michael J. Fox Foundation for Parkinson’s Research (MJFF) has awarded Robert Hauser, MD, director of the University of South Florida Parkinson’s Disease and Movement Disorders Center of Excellence, $124,996 to
identify different forms of Parkinson’s disease based upon patterns of long-term outcomes in patients.
The USF study will evaluate whether it is possible to identify Parkinson’s disease
subgroups based on how patients are faring seven to eight years after initial diagnosis. Some patients experience few symptoms at this stage of the disease, while others have problems with thinking and memory, motor fluctuations, mood, parkinsonism (slowness, stiffness, tremor) or autonomic function (blood pressure, urinary and bowel function).
“One of the most frustrating aspects of Parkinson’s disease — for patients,
researchers and clinicians alike — is the significant variability in how the disease manifests itself from patient to patient,” said Sarah Orsay, chief executive officer of the Foundation. “The retrospective studies funded under PD Subtypes aim to analyze data already gathered on different forms of the disease. This analysis could yield valuable information with potential to improve clinicians’ ability to treat patients with existing therapies. It could also advance development of new treatments and enable better design of future clinical trials.”
The USF project will tap into two significant clinical research populations in the Parkinson’s field -- the
DATATOP (
Deprenyl [Selegiline] and
Tocopherol Antioxidative [Vitamin E (Tocopherol)] Therapy of Parkinsonism) study and the
CALM-PD (Comparison of the Agonist Pramipexole with Levodopa on Motor Complications of Parkinson’s Disease) study.
How will this study be used?
The items in [] were added by me.