Raising PD Awareness for a Cure

April is Parkinson’s Disease Awareness Month. It’s difficult to shed a light on a disease that resembles all the typical signs of aging like walking slow, having tremors or falling. But, Parkinson’s Disease, or PD, is so much more. It is a progressive neurological disease that has no cure. It’s a movement disorder that occurs when the brain cells that make dopamine – a chemical that controls movement – stops working. In addition to movement, people with Parkinson’s can also experience other physical and psychological issues.

More than 50,000 people are diagnosed with PD every year ane each person’s experience is unique. Some people experience minor symptoms that can remain that way for a long time, while others deal with more advanced problems. There are medications to ease the symptoms and improve quality, but again it’s not a cure.

How do I know so much about this? I have two special people in my life diagnosed with PD. I often think of my grandmom, Elsie, who swam every day at the pool in West Palm Beach, played pinochle and gin rummy with my grandfather and doted on her grandchildren while enjoying her coffee and Pepperidge Farm Milano cookies. After her diagnosis, it was jarring to watch this once vibrant woman slowly and strategically maneuver her walker around her living room. Over the years, her voice became much softer, she had stiffness in her limbs, and her ability to attend family celebrations was challenging to say the least. She fought PD for a long time and experienced other complications which led to her passing.

Today, I watch my dad fight PD. For as long as I can remember, my dad has always been on the move and never one to sit still for long. As a middle school teacher, he used to sprint up and down the stairs as fast as his students—faster if he was running late. He bowled frequently, rode his bicycle and enjoyed the outdoors. At parties, he and my mom could typically be found on the dance floor. To this day, they can still cut a rug which is a joy to watch and is, coincidentally, a highly recommended form of exercise for PD patients.

His PD symptoms are completely different from my grandmother. His PD presents itself as tremors in his hands, shuffling his feet as he walks and sometimes losing balance and falling—which has happened on one too many occasions. In public places, he uses a cane as a safety net, but he doesn’t let it stop him from living life to the fullest. Recently, he and my mom went on the trip of a lifetime to Israel. They have a national parks tour scheduled for later this year.

I’ve come to recognize PD in celebrities before they announce their diagnosis to the public. I once heard former Philadelphia mayor, Ed Rendell, speak at our synagogue, and I knew what he was facing by the way he walked to the podium and his mannerisms. I hate being right about these things.

As the daughter and granddaughter of two people affected by this disease, I am doing my due diligence so that everyone can continue to make their dreams come true despite their illness. I donate to the Michael J. Fox Foundation regularly. I’m considering joining a research study since I am part of a high-risk group that may or may not develop it in my lifetime. But I am still thinking about it. I honestly don’t know how I would react to the results. But that’s a story for another day.

In the meantime, I’ll continue to raise awareness and funds to support those who are diagnosed early in life like Michael J. Fox at the age of 29, and my dad who inspires me in so many ways.

If you would like to help fund important research to find a cure or support organizations that offer exercise programs and support to PD patients and their caregivers, consider donating to the Michael J. Fox Foundation or your local PD charity. In the Philadelphia area, I recommend the Parkinson Council.

 

Songs and Schedules

I’m sure we all feel like every day is Groundhog Day. It’s the same thing over and over again. I’m fortunate that I can work from home and have two teenagers who can fend for themselves – for the most part. Here is how I’m currently spending my day. I could use some ideas to spice things up. Right now, I’m mixing up the songs I sing while I wash my hands.

Feel free to leave your ideas in the comments.

7:15 am – Wake up

7:45 am – Get out of bed. Check my phone to see what day it is. Wash hands and sing Happy Birthday.

8:00 am – Shower

8:30 am – Coffee, breakfast and watch last night’s monologues. Wash hands and sing the Eagles fight song.

8:45 am – Walk around the kitchen island to my workspace on the other side and login to work.

9:30 am  – Let the dog out. Look up and do the Facebook list of the day. Today was 10 jobs and one is a lie. Guess which one. Silly, but it does pass the time.

9:45 am – Wash hands to The Frog Song. If you celebrate Passover, you know which song I mean. For everyone else, click here.

10:00 am – Daily team check-in and send out a few emails.

10:30 am  – Throw in a load of laundry, run the dishwasher, get yesterday’s mail and take something out for dinner.

10:45 am – Touched my face. Wash my hands to My Girl by the Temptations.

11:00 am  – Kids wake up, come downstairs and make a lot of noise just in time for my Zoom meeting. Login and walk upstairs to my bedroom and shut the door.

11:05 am  – Strategically place my laptop someplace where my colleagues can’t see my unmade bed and messy closet.

11:30 am  – Move laundry to the dryer and take recyclables out. Check voicemail, email, Slack and text messages and answer accordingly.

12 noon – Lunch and take the dog for a walk. Wash my hands to Happy Birthday because I ran out of songs.

1:00 pm – Log back into work and dive into a project I’ve been wanting to work on all day.

1:15 pm – Take a break.

1:45 pm – Answer phone call to reschedule my mammogram for the third time. No appointments until June. 🙁

2:00 pm  – Text colleagues to see if they are getting anything done. If yes, what’s their secret? If no, begin commiserating about how we never thought we’d miss being in the office.

2:30 pm – Wash hands and sing Landslide by Fleetwood Mac.

3:00 pm  – Take another deep dive into the above project that I thought I’d be done by now.

4:00 pm – Pat myself on the back for a good start and make a list of tomorrow’s next steps.

5:00 pm – Wash hands and counted to 20 this time. Put my feet up and watch a little tv

6:00 pm – SHIT! I forgot to make dinner.

6:30-7:00 pm – Hungry family members come up one at a time to inquire when dinner will be ready. Vow to order out tomorrow night.

7:00 pm – Dinner & watch Jeopardy.

7:30 pm – Wash hands – probably for 10 instead of the full 20 seconds. Fold laundry in front of the tv.

9:30 pm – Exhausted even though I didn’t do that much today. Time to get ready for bed. Wash hands.

10:00 pm – Read a chapter in my book.

10:15 pm  –   Zzz….

What Success Can Look Like

I don’t love public speaking, but I’m told that I’m better than I think. I once took a class where we were videotaped giving a speech in front of the group. I was surprised to see that while my heart was pounding on the inside, no one could see me sweat. I never let on how nervous I was and seeing it for myself was a game-changer.

This came in handy recently on the way to a job interview, I went over the presentation in my head. I was feeling confident about my slides and prepared for whatever follow up questions would come my way. My accomplishment stories were solid, and I was proud of the two writing pieces they assigned to me. Everything was just about ready to go.

But I had one problem. I didn’t have an opening line. I’m a communications professional, and for the life of me, I couldn’t figure out how to kick things off. If I wanted this job, I needed a hook. Something that would grab their attention and hang on my word. Something that would make the senior leadership stand up, embrace me and say, “where have you been all my life?”

I went through the presentation in my head as I drove to their office. Nothing sounded right, and now my palms were sweating. I had that nervous feeling in the pit of my stomach. The voice inside my head was screaming at me.

“How could you be so stupid,” it said. “You worked so hard on this presentation. Why did you think that something would just come naturally? Or magically?”

I pulled into the parking lot with 20 minutes to spare. I had a few ideas floating around in my head, but I grabbed my laptop and downloaded my presentation hoping inspiration would strike.

Finally, I took a deep breath and asked myself: What am I trying to say? What do I bring to the table that they desperately need?

And then, out of the blue, it came to me. I am a storyteller, and people love to hear a good story. Stories are powerful things. They spark emotion. They inspire others to act and to give generously.

I finally had my opening line and made my way into the office.

* * *

Whenever you are ready,” the CEO said.

I stood up and even though my heart was beating a mile a minute, I remembered my public speaking class. I took a deep breath and walked to the front of the room. My hands were no longer sweaty. I was back in control.

“Thanks again for inviting me here today. Again, my name is Elisa, I’m a sucker for a great story.”

At the end of the presentation, I thought it went well. The opening line was well received, and it looked like people connected with my ideas. Of course, one can’t be too sure about these things. Maybe I did terrible, and they were just being polite.

But, here’s the best part.

During my one-to-one with the CEO, her first question was this.

“Do you train people to speak in public?”

I was floored. I guess they never saw me sweat.

Best compliment ever!

 

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