Parkinson's Month is Every Month around Here (AKA Longwood Gardens Tulips)

The month of April is officially known as Parkinson's Awareness Month. April 11th, this year, was officially World Parkinson's Day. Unlike for birthdays and Christmas, it would seem, we don't get presents for our day. If we do, mine are still waiting to be delivered on a 1980's style 6-8 weeks for delivery deal for the turn around in shipping and handling.

Nevertheless, we do get tulips as our official flower. More specifically, we get red tulips with a fringe of white, but since I have a month where nobody baked me a cake, much less gave me a gift card, I'm taking all colors for all of us who have Parkinson's or know someone that does.

That means that you win, too!

That said, it's not like I didn't get anything "extra" with PD. Comorbid conditions abound as Parkinson's is the gift that keeps giving. Since I've had it (symptoms 2011 - preliminary diagnosis September 27, 2016 - actual diagnosis November 1, 2016), I got way more than the standard tremors.

1) A whole lot of learning (25 of those things are HERE).
2) Hyperhidrosis
3) Lyme disease, though they just found that while looking for Parkinson's - it's the Great Imitator. This was my "biggest, bestest" free toaster for playing.
4) REM sleep behavior disorder
5) A 2-part battle with pneumonia HERE and HERE and concerns of aspiration pneumonia like swallow studies and shuffling off this mortal coil.
6) Bradykinesia concerns
7) Dystonia starting to take hold
8) Anxiety and mental overload concerns

And my family and friends got them, too! Bonanza!

So yeah... I've learned other things, too, but I'd rather not focus on that. I'd rather give you all tulips of empathy, support, and good vibes to brighten your day as you do mine when you read my writings or offer me support.

You're awesome!
If you like this article, please like my Facebook page to be updated with more essays as they post. I write about Parkinson's and the things that keep me happy, thus extending my quality of life, somewhere in stage 2.

These photos are from Longwood Gardens, which is outside Philadelphia. I took them 2 weeks ago, when my wife and I went to visit, as we do regularly (we get the year passes). Enjoy them and remember that Parkinson's is more than 30 days a year. Never stop educating and advocating!

Parkinson's Awareness in Lancaster

April showers bring May flowers, but March winds and late-season snowstorms bring tulips, gray clothing, and Parkinson’s Awareness month. This year, Lititz, Pennsylvania, hosted their first ever event in honor of Parkies, caregivers, researchers, and allies everywhere.

PARKINSON’S AWARENESS WALK

The event, like so many other events for this month, took place smack dab in the heart of Lancaster County Pennsylvania (Amish Country – think the movie Witness meets small-town shops). Brought into being by Parkinson’s Circle of Care Alliance, our local day was also made possible with generous time and help from Heart of Lancaster Hospital and the Lancaster Barnstormers (independent league baseball).

Lititz is a beautiful town that is filled with country decorations stores, jewelry shops, small businesses, and restaurants. It’s about 25 minutes from where I live (Ephrata). Thus, it’s nice to know that I don’t need to go to Philadelphia (90+ minutes away) to advocate for our cause.
More importantly, this event is a sign that change is coming to the rural and suburban areas outside of the cities. Knowing that Reading and Lancaster (2 big cities in eastern Pennsylvania) are creating support groups and spreading the word says that better days are coming for people who face Parkinson’s every day.

Here, the community wants to help. They want to find a cure. They recognize the power of elbow grease, brain power, science, and healthcare to make a difference.
Now, all we have to do is walk to raise awareness and funds to power those processes!

MY OTHER CAREGIVER

In my life, I’m lucky to have a 24/7 team of caregivers in my family and friends. First and foremost of these people is my wife. However, she was on the 14-day disabled list after she had gallbladder surgery, so she was unable to walk. My dad was competing for his fishing tournament crown (we’re all a part of his support team for that). That left my mom and me to do the 1-mile walk around the hospital.

And yes, a 46-year old boy needs his mother, and my mom’s the best… even if she sets a faster walking pace than I do!

THE EVENT ITSELF

When we arrived on the scene, we were some of the first people to join in the festivities. Soon other people joined us, too. A gentleman tied balloons for kids, while Cylo (the Barnstormers’ mascot) gave hugs to all of those people who met him. Considering it was a hot day, there were lots of water bottle stations to hydrate us.  That’s definitely a good thing for a guy with hyperhidrosis walking around an exposed path.
It was also a happy feeling to see so many Parkies in various stages of their condition. I have always felt that one of the best ways to campaign is for those people who are living with a condition to be out and about. We should stay active, and open to discussion about the good, bad, and the ugly of Parkinson’s. By simply showing our faces in many places, we represent the human experience in the chaos of Parkinson’s.

ROCK STEADY SUE

Additionally, there are people who want to make a difference for us. These include one of the head honchoes at Rock Steady Boxing, Sue Ludwig, who was more than happy to knock the Parkinson’s out of my life. She and the rest of her staff are also happy to help Parkies avoid the rigidness in the bodies. Additionally, they improve their strength, balance, and confidence.
And this is what all of the people who were giving their time in energy were doing on April 14^th. Simply put, we’re in this together, and we’re making a difference because of how we work with one another.
Because of this, the future is ours!

Longwood Gardens (near Philadelphia) and 10 Million Tulips for World Parkinson's Day (April 11th) and Awareness Month (April)

For those people who aren’t aware, April is Parkinson’s Awareness Month, and April 11^th is our official World Awareness Day (I say OUR since I, too, have early onset Parkinson's disease). This is my 2^nd one since being diagnosed. Unlike Pitchers Catchers’ Report Day (AKA male Valentine’s Day), my birthday, or Christmas, I don’t think we get gifts for it. However, since we have an official flower, the tulip, I think we will probably get things that have to do with that.

All things considered, it’s more likely than getting a classic car like this (although I’d settle for a ride in one).

With that being said, there is a Facebook group called 10 Million Tulips, and I would like to plug their site. Mind you, I get no money for this (nor did the admin ask me to plug them), but they post pictures of said flower in honor of what we, as Parkies, go through. I would like to encourage you to go visit their site and consider being a member of the group.

If you are like me, though, and you have access to a real stately or local garden with tulips, please take advantage. In April, they blow up really big and bright and beautiful (just like the really amazing ones in Holland). Nothing beats being in the fresh air of nature, even if it’s a human-arranged facility like Longwood Gardens near Philadelphia, and more importantly to the plight of us Parkies, nothing makes us feel better than empathy for our situations.

Once again, I’m not paid to advertise for them, nor did they ask me to do this, but as one of my favorite places in the world (it is that good), I’m going to recommend them.

My thoughts on Longwood:

1.      Getting in is $23, though you can buy a yearly membership. I recommend that. If you think this is pricey, remember, this place is humongous, garbage + graffiti free, and artistically beautiful. It’s worth your time. The same is true with their food. You’re paying for flower upkeep. Trust me; these people are pros. They don’t slough off.

2.      Much of it is paved for wheelchairs, and there are plenty of benches (this is important since I write to a lot of people who have Parkinson’s).

3.      There are plenty of events going on all year round. Christmas is spectacular (and requires timed tickets).

4.      They rotate dead flowers out at night, and there’s always something bright and wonderful growing.

5.      There are seasonal flowers everywhere.

6.      You shouldn’t try to see it all in one day. For your first visit, I recommend the conservatory and the main fountain garden. If your legs and energy can take you, hit the waterfall and the Italian water gardens. If you’re there in spring, go see the Truffula colored trees down from the waterfall.

7.      Sometimes, people bring kites or picnic lunches.

8.      Bring or buy water.

9.      Hats and sunglasses are nice outdoors.

10.  Be ready to see a million people taking pictures. You will be, too.

Rather than tell you what’s there, I’ll give you 32 more pictures so you can get a feel for it!

Enjoy. Here's a map of the place as well.