Parkinson’s disease is still a chronic, progressive neurodegenerative disease – meaning, according to the CDC that it will last longer than 3 months or in this case until death do them part.

Oddly enough, in some cases it is possible to slow the progression of the disease with certain medications IF the work for that particular person. Which means that with say, Azilect, an MAO-B inhibitor as the first prescribed PD medication, the disease might develop very slowly. The ADAGIO study established that with 1mg doses per day and demonstrated (although not to the FDA testing criteria – but that’s another story) that you can barely see progress with 2 mgs. Not for everyone but for a significant number of PD patients measured against the UPDRS.

When doctors reach for their prescription pads they usually write down the dopaminergic med, levodopa-carbidopa or Sinemet. And this med dies a good job with several of the symptoms until the wearing off times become increasingly longer – meaning the patient becomes more symptomatic and has to increase the dosage. And then it happens again and they add another med to the combo. And so on. That is why it was not my husband’s choice…and I am glad to report that because my husband has already started taking CoQ10, it was not the choice of his doctor either.

Depending upon her age, the length of time from the first symptom (which can occur years before) what symptoms she develops, how well the meds control the symptoms, whether or not she gets a regular full body medical massage specific to her stiff muscles, is in a good exercise therapy regimen, pays attention to nutrition, nutritional supplements (vitamins B,E, C, D, antioxidants such as CoQ10,)
she might do quite well for some time.

About pain – often in women PD can actually begin as neck and shoulder pain years before any other symptom. But who would connect the two? So there can be PD pain even before the diagnosis. As the disease progresses, muscles become stiffer and this tension on the musculoskeletal system can cause a great deal of pain. Many PD patients have extremity cramping. The longer the progression, the greater the pain or the possibility for pain. You try to treat the symptoms and relieve the causes more than you try to treat the pain usually. In the final stages, you treat the pain.

Another kind of pain is emotional due to depression about having the disease, changing self image and loss of self worth. And then there is social pain which occurs in public when there is a lack of understanding – empathy – human-kindness – ignorance – bias whatever on the part of other people. That pain often keeps the PwP mostly housebound.

I know that my husband is especially sensitive to the remarks of other people as he shuffles along. His tremor is fairly well controlled by CoQ10 and creatine but his walk is aggravated by arthritis in his knee(s) – on his bad side (that’s the PD side) there is PAIN. His other knee isn’t much better but because his PD is still unilateral, the real muscle tension/torsion is on the PD side; so that leg is always in pain. He also has pain in his shoulders from the tense muscles. Knots which are worked on in massage therapy – but it is expensive and not covered by our current health insurance…

I think that your acting director is lucky to have someone as decent and sensitive as you working with her. Your question was asked with respect and dignity. Thank you.

I am adding a list of chronic diseases so that you can put this into perspective. So far I haven’t found a longer list (this one pertains to health insurance)
http://www.bsu.edu/payroll/media/pdf/chronic-disease-list.pdf
I prefer the next list
http://www.spectramed.co.za/UploadedFiles/Chronic%20Disease%20List%202009-A.pdf

Here are a few good sites for reading about Parkinson’s Disease:
http://www.wemove.org/par/

You can navigate through this site for some good, practical information:
http://www.umm.edu/parkinsons/facts.htm

And stop by the site below for information about Forced Exercise, PD exercises, pain, PD stages of progression, treatments in the pipeline and much more.