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Get a Second Opinion

Get a Second Opinion

Be assertive with your own healthcare professionals and ask questions. If you don't feel heard, find a new practitioner. 

A Partial List

A Partial List

Giddyup readers!

A partial list of “Things I wish I knew when first diagnosed with a progressive brain disease.”

Well well well, looky here, I dun figured a few things in the last 6 years! Maybe if I share my failures, it will help someone here.


Trial and error, two steps forward, one back, and hey cowboy, stop touching my belt buckle. I’m just friendly, darlin’! If I were coming onto you there would be no mistaking it for anything else.

OK, whew, glad we’re clear on that. About that list...

NUMERO UNO by a long shot:
Agonists* warp your impulse control. 
Knowing my usual baseline and practicing hypervigilance in terms of impulses would have been an easier plan. Now I sit with the root that is prior to any reaction, and consider that first. The pause and deeper reflection are keys to the kingdom.

2. How to deal with depression and anxiety in Parkinson’s and communicate better with intimates. It’s not easy even for those who know us quite well to identify and interact with various signs of depression. This condition takes no prisoners! Be ready, because you’re heading into the mental equivalent of an MMA ring with no tapout if you have been dx’d. Those who stand by us are most cherished friends.

3. That the effects of alcohol are not only doubled now, it consistently negates the positive effects of various medications. An amount over two glasses of wine can act as a slow poison for my body. The hook was that one or two drinks stopped all tremors. That’s one seductive hook, to feel sort of normal and more fluid at social functions!

4. That I can no longer jam the family or personal schedules and must be extremely careful about what I take on. It was unrealistic to think that maintaining the same pace would even be an option.

5. Don’t bother explaining this situation to anyone who takes your Parkinson’s symptoms personally. If they insist upon holding you under the wrong microscope and vivisectioning you according to wayward opinion rather than facts, they’re refusing key info. Back away and save your precious energy if this becomes a problem. Not worth it, unless you prefer to die faster.

What are yours?

* A common Parkinson’s medication to assist with mood and movement.