SPOT ON! Ginny's insight has really been true to form for us. Yes, we all tend to measure the changes we see over time, but even day to day stress, nutrition, and quality of sleep can have such a bearing on how the loved one with PD feels and how their interaction with both the physical and the social world go on that particular day. I have an idea for a t-shirt design. The word unpredictable printed with the P and the D as upper case letters in bold!

It's not just the Parkinson's that determines progression, but also things like the age of the person, what other illnesses they have, how well they eat, how much they exercise, their attitude (positive or negative), stress levels, etc. From this forum, I've seen that a fall or illness can cause sudden deterioration. Some people stay at level 2 for years; others go from diagnosis to a wheelchair in months. This is a very unpredictable illness.

There is no set time he may never get to the upper stages I know people who have had Parkinson for over 20 years and get around better than I do

I've spent a lot of thought on this very topic and have reached a couple of conclusions. First, the medical profession is too focused on single issues when it should be digging deeper. While it's true that Parkinson's is 'unpredictable', it is also true that each individual has varying attributes, characteristics, etc. that are predictable: AGE foremost, yet evidence suggests that treatment is most often the same whether you're 56 or 96, weigh 100 or 200, or have other health issues that may overlap, such as sleep apnea. Health providers also overlook what may be key personal habits, such as reading, writing, and hobbies that appear to benefit or lack thereof do not prevent decline. In other words, real 'science' is lacking, and, as a result, the focused approach produces the 'unpredictable' result.

Our experience parallels what others have described. While symptoms, signs, and stages of PD are often laid out like checklists, my mother-in-law's progression has been so individual. It took several years to get a diagnosis in part, I believe because she had been so active and physically fit as an athlete and fitness instructor. We have thankfully seen progress move slowly, with more discernible progression following the emotional stress of the deaths of her husband and her brother. It can feel overwhelming to consider the what-ifs of the future and we try hard to stay focused on today, being attentive to medication, nutrition, exercise, hydration and social engagement. I describe this illness sometimes as a greedy thief, but on our best days I can view it as slowing me down in my relationship with her, reminding me to ask about important things, making me a better listener, and motivating me to find a work around, adjustment, or accommodation for a new challenge that maintains her safety, happiness, and ability to stay as independent and engaged as possible. A great neurologist, a wonderful PCP, a caring part time support caregiver are all blessings in the right now. As a caregiver, one needs support as well. I have learned to ask for help, and I have gotten better at figuring out the musts and letting other things of less importance drift from center focus for right now. She is a gentle warrior and I cry on every drive home, but it's sacred space to be on this curvy, bumpy, unpredictable, poorly marked, potholed, filled with detours road with her. Sending an enveloping hug to ALL the warriors and a special encouragement for all of those involved their care