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Am I In Your Way?

Am I In Your Way?

Since your diagnosis, what do people do or say that bugs you?

“Could you please hurry up or could you just get out-of-the-way?”

Like someone who begins knocking on the bathroom door or pulling at the handle the second you get in there, and you know that it’s going to take you a little bit longer so you rush, which makes you start shaking badly! It’s a small miracle you did not pee your pants.


PwP can be unpredictably off-balance, and sometimes we are just off in general. Our friends and family MUST understand this is beyond our control. At times my meds aren’t working, or it’s particularly stressful, so the motor and non-motor symptoms get spiked.

It’s easy to be distracted or overstimulated, and understandably, anxiety is part of this gig. Appearing kinda out of it is a common symptom AND side effect in most neurologic diseases. Start with insomnia and work out from there. It’s a small miracle when a PwP can function well. I certainly like to make the most of “on times”!

Question: Why do we have to deal with the double insult of ignorance about our condition AND projection after we are BRAVE enough to put ourselves out there?

Answer: We don’t.

Pro Tip: Walk your crooked shaky self right away from ignorance and shaming and projection. Enjoy the time you have earned to enjoy yourself free from prejudice. They don’t know any better, but it’s not necessarily your job to educate Joe Ignorance just because of your diagnosis. Don’t bother, just go find your own way to shake it off.

You are up and moving and your shoes are tied, so you feel pretty OK...

Go now and be that small miracle!

No one should suffer alone

No one should suffer alone

Depression is made worse by isolation. Find seasoned professionals and fierce bears who will support you in this journey. 

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.