Quote:
Originally Posted by littlesky
Ronhutton, I will take your wise advice, keep with the healthy lifestyle, take my Azilect (for whatever it's worth) and try not to get excited. I asked my MDS and she, at a prominent MD clinic, hadn't seen the 2006 Mayo Clinic study. The one observation she made worth sharing is that one's rate of progression will remain constant. So if slow or almost nonexistent from the start, that is what you can expect. No sudden kick into high gear. She said that those of us with apparent BTP drew a lucky number in the PD lottery.
I asked about doing the Datascan. She said that was my choice, that insurance would cover, but that the results wouldn't alter treatment recommendations.
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We too were seeing a famous MDS, specialty in PD no less, at a very very good teaching facility...I won't go into details but suffice it to say that reputation isn't everything. We, too, progressed slowly for several years. Then a few major stressors hit and we have progressed like a wildfire in the last year and a half. Stress is beyond a key factor.
I don't mean to scare you at all, and know this is not something anyone wants to hear. But I share it because it's true. Some stresses you cannot avoid, like death of a beloved family member or very close friend, we had several of those just right on top of each other, and I could definitely see the effect on PD, and it's permanent. Other stresses you really need to avoid like the plague, because that is what they are. They will take you down. Tell your friends and family why you cannot do this or that, and they should understand. If they don't or won't, too bad-it's your life!
We have had to learn to be able to say "we're just not up for that", "today is not working out to be a good day", "meds are not working today" (this one, unfortunately, is very common for us, we could say it every day), you get the idea. PD varies day to day and for us, hour to hour. Your circle of people needs to understand this. If they can't, get a new circle...we have found that even having to repeatedly explain that we can't do something and why, to people who already well know, is very stressful in itself. I think PD actually makes people more susceptible to stress in the first place-things that may not have stressed you out before dx now do, and in a much more pronounced way than they ever would have pre-pd. It's vicious.
You are wise to exercise, also key. You may have also read about how important humor is, get some good belly-busting laughs in every day (check out the radio or netflix/equivalent for the stand-up comedian channels, cheap and very worth it).
I would also add that if you don't have an animal in your life, get one. Heck, get two
If an animal is not allowed where you live, or you feel you cannot take on that responsiblity, check out surrogate or foster programs in your area. Or just go to the animal shelter and volunteer if you are able. There is a reason nursing homes have animals brought in for their residents to pet, hold, and love on a regular basis.