Advice for the Working Person with Parkinson's
In life, we all need a mentor guide to show us the way. We all need professional assistance and advice in all we do. Here, a good teacher can take us to great heights.
See the important things
When I would teach summarization skills to students, I would begin by asking them what they saw first when I showed them an autumn picture of the mountains of Hawk Mountain (a beautiful raptor "sanctuary" in Pennsylvania). Some would see the River of Rocks. Others would see different color trees. In the end, we talked about how everyone was so caught up in the details that they didn’t see the complete picture. This advice helped many of them focus on the gist...not the highlights.
With summaries, the point was to break the whole thing down to 10% of the total and hit with the main idea. That’s a great concept for understanding a story’s meaning, but not a doctor visit or a meeting with a social worker. Thus, the key is to take complete notes, take a caregiver, and/or take a phone number/e-mail, so we can clarify the directions.
Office of vocational rehab
Yesterday, I met with my Office of Vocational Rehab (OVR) worker to discuss my future as a working individual. It’s not so much that we’re thinking about now, though we are, but we definitely need to discuss days beyond today. Here, as a person with a disability, I know that there are things limiting me in the future:
- Energy (how long can I do the job before I get tired)
- Stamina (am I physically strong enough to do the job)
- Car keys (how long will I keep driving, so I can get to work)
- Cognitive skills (can I go from A to E without a pause or forgetting)
- Danger (is my being there likely to hurt my co-workers / me)
- Medicinal problems (could actual or potential side effects affect my workplace)
- Getting out of bed (yes, sometimes it's hard to get moving)
- Customer service...
If my value over replacement worker is still there, I'm golden. We're not talking about a cost-effective or under team control first baseman as opposed to perennial all-star here. Yes, ideally, we'd like Aaron Judge, but sometimes, we need to pony up for JD Martinez.
Sorry, baseball slip...
That said, the point is we're talking about whether my issues would hurt another person's benefits. Here, we need solid advice. As my days of teaching wound down, I looked at my pharmaceutical issues, hospital issues, cognitive issues, and family issues. Here, I wondered what could be based on some calculus projection of where I'd be in the future. While I still am "good to go," I'm not sure where the future will be. Hence, I took a peripheral job. After 17 years at the podium, it wasn't easy, but in many ways, it was the right choice.
Having people around for advice was paramount.
Taking "me" out of the equation
Often, what the law entitles us to and what customers deserve aren't the same. Granted, this is my opinion for me, and it's why I made the choice I did (your choice will be affected by your understanding and choices).
In the past, I was in a class where a teacher's VERY REAL personal problems took her out of 2/3 of the classes. Most people didn't care about learning philosophy, but I did. Sadly, she kept on going until the end. For some classes, she was great. She missed many shows, though. As for other classes, they felt phoned in. If only she had taken time for herself, she could have helped herself and the class. I'm not sure how she ended up in life, but I know existential philosophy and life's stresses don't jive.
In another case, at the end of my English teacher's life, he also faced real health problems. With great sadness, he gave up his position with a piece of chalk still in his hand. This broke his heart and his will to go on. They say all the good ones go like that, but it was still sad to see.
Here, I understand these three sides of the story and the "I Have to Pay My Bills Blues." The point is there are things to consider. For me, I chose to choose while I had options.
Work planning advice
Now, I go to OVR, and I find that many of us Parkies are entitled to get job help, insurance help, therapy, medical assistance, and other counseling. Actual services and costs may vary due to finances, but services are available. As a proud Pennsylvanian (especially when compared to the Ohio blood in my wife - just kidding), I link my state's OVR page as an overview. Please check it and your state's page out.
Recently, our own Michael Church wrote a great article on this. He makes a lot of awesome points.
Talking to bosses
In response to his thoughts about "being out," I say that I was out right away because I didn't want to hide symptoms. I was out to bosses, students, family, friends, and anyone I met for five minutes. That said, I now feel there are some people who get it and some people who I wouldn't speak to without a disability lawyer present. Granted, that's a minimal amount, but still. When our positions are "at-will" or "term to term" (in my past life), we might find we walk on slippery slopes with our degenerative conditions.
For my new job, I told five different people who interviewed me about my condition. They get it. I hope your people do, too. In this, I wanted to be up front. It's not like I wanted a million provisions (acknowledgment of Parkinson's mask, a fan, and awareness of tremors), but there's something about being honest and having medical appointment options.
Nevertheless, it's never too early to see people who can make the changes smoothly for you. For this, my OVR guy is on point.
I hope this advice helps you as it helps me.
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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