This article from LA Times focuses on Linda Ronstadt, who was diagnosed with supranuclear palsy, a variant of Parkinson disease, in 2013.
Do You Know How Lucky You Are?
While my grandkids were here last week, we read books every night before bed. And, of course, each night at least one book had to be by Dr. Seuss. The night before they left, we read “Did I Ever Tell You How Lucky You Are?“
It starts out by offering some rather sound advice:
“When you think things are bad,
when you feel sour and blue,
when you start to get mad …
you should do what I do!
Just tell yourself, Duckie,
you’re really quite lucky!
Some people are much more …
oh ever so much more …
oh, muchly much-much more
unlucky than you!”
Of course, Dr. Seuss then spends the rest of the book expounding on all the different ways the reader is lucky as a ducky.
Most people would agree that having been handed a diagnosis of Parkinson’s disease is anything but lucky. In fact, it can be downright scary. Even so, there are things to be thankful for. Things that cause you to pause and say, “I am so lucky” or “I am so blessed.” Things that take your mind off the unknown. Things that give you hope.
Today, I fell
I was puttering in my yard, trying to eradicate the wounded and the dead and replace them with the new. I stepped down on the shovel to finish digging the hole for a salvia plant, and I lost my balance.
It seemed as if I was falling in slow motion.
On the way down, all I could think of was hitting my head on one of the rocks that line the pathway. Some of them are sharp. I fell hard on my arm and then, with a rocking motion, came to a halt, my head never touching the ground. I waited a minute to assess the damage before trying to get up. No pain. No scratches. I was lucky. I was blessed. Given what could have been a terrible accident (considering the DBS wires tucked in my brain), I was indeed blessed.
Life is so beautiful
I went over to my grandson’s house yesterday to help him and his mom weed their backyard. When we had finished, he began yelling for his mom and me to “Come here. Quick! Come here!” He was jumping up and down (literally) with such joy on his face that I was certain he’d found a bug he’d never seen before. (Or perhaps George, “his” praying mantis, had shown up again.)
I approached where he stood, next to a small, bushy plant. He looked at the plant — a weed, by most standards — and with great excitement exclaimed, “It’s so beautiful!”
It was a smallish plant with little yellow flowers scattered here and there. To him, it was so beautiful.
Oh, how lucky I’d be if I could see the world through the eyes of a child. But wait! I did!
Oh, how lucky I am!
“Thank goodness for all of the things you are not!
Thank goodness you are not something someone forgot,
and left all alone in some punkerish place
like a rusty tin coat hanger hanging in space.” —Dr. Seuss
The Story Changes, While the Message Endures
Parkinson disease was in the national spotlight recently with the passing of auto industry icon Lee Iacocca, as well as ESPN founder Bill Rasmussen’s recent announcement that he has been living with the disease.
Learn more about these two very different stories, and how Parkinson’s affected each of them.
Free and inexpensive resources to help on your Parkinson’s journey
We asked, and you answered! Here are a few of your favorite FREE or INEXPENSIVE resources and tips that you have found helpful in dealing with your Parkinson’s.
Barb in Davenport: I use the CALM app on my phone. It’s not free but it is so worth it. Check it out for high quality meditations, sleep stories, daily inspiration, etc.
Nancy in Mount Pleasant: Subscribe to “Brain & Life” magazine. It’s helpful and free!
Bruce in Kaukana: I have Parkinson’s and we use a free app called Life360. It allows you to add family members and you can see/follow them as they are driving or riding in a vehicle. It gives some piece of mind knowing you can see where a person is while driving. You can add your aging parents, young drivers, drivers with or without a disability.
Anna in Milwaukee: The “Every Victory Counts” manual from Davis Phinney Foundation. The digital version is free, or the print version is $5.50. The Parkinson’s Foundation offers their free Aware in Care kit as well.
Joel in Fond du Lac: The Parkinson’s Playbook by Robert W. Smith. It’s available on Amazon for $14 and includes some tips on lifestyle improvements and healing techniques.
Jason in Whitewater: WPA’s program last week in Janesville was great, and connected me to a local gym.
Susan in South Beloit: I used a music stand to put my heavier books on when I’m reading. Also, I go to the YMCA several times a week to take water exercise class. It’s refreshing, easy on my joints and a great way to make new friends.
Have more ideas to share? Email [email protected] and watch for a future article!
Caregivers: Overcoming the Grief Caused by Parkinson’s
One thing that many people might not associate with experiencing Parkinson’s disease is grief. Experiencing grief with this disease is real. It can be felt deep down in your soul, whether you are the one who actually has the disease or you are the caregiver. You mourn for a life that used to be, and fear it may never be again.
Although our life changes in unexpected ways and fear threatens to consume our days and terrorize our nights, we can learn to overcome those wretched feelings. Innumerable people miss out on the rich experiences and blessings they have been given today because they can’t stop worrying about their future with Parkinson’s.
In “Living Beyond Your Feelings: Controlling Emotions So They Don’t Control You,” author Joyce Meyer writes, “The three most harmful negative emotions are anger, guilt, and fear.” When we have Parkinson’s disease, we are particularly susceptible to anger and fear.
We experience anger, as evidenced when we ask ourselves the age-old question, “Why me?”
We pump our fists in the air and ask, “What did I ever do to deserve this?!” Our dreams of a better tomorrow feel as if they have been sucked dry and replaced with feelings that frighten us and worries we can’t seem to get under control.
We think about what used to be: The days when we were able to work at a job we loved; the times when we could get down and play with our grandchildren; the summer vacations we took that used to reenergize us instead of wearing us out. Grief steps in and leaves us feeling fearful and despairing.
Two weeks ago, I lost someone dear to me. She was like a second mother to me. I babysat her daughter as a newborn. She was my maid of honor at my wedding. And when I think of her, a great sadness overcomes me: grief. It not only came upon me at the news of her passing, but also returns each time I think of her.
Getting a diagnosis of Parkinson’s disease can be like losing a loved one.
There is the initial grief, but waves of grief can still overcome us, sometimes when we least expect them. Often, those waves of grief are accompanied by fear. Not only are we dealing with what we’ve lost, but also we are fearful of what we may still lose.
Getting through grief over the loss of a loved one takes time, and the amount of time varies with each individual. It’s the same with the grief of having Parkinson’s.
Grief is normal.
Grief is a part of life. While we must learn to accept it, it is still OK to cry. It is OK to mourn what we have lost. In that mourning, however, we need to remember that life goes on. While we may not know what tomorrow will bring, we know we have this moment right here, right now, and Parkinson’s can’t take that away.
“Sometimes, art can communicate what words cannot”
Framing OFF Through Art is a monthly art series inspired by the stories of people with Parkinson’s and their carers.
Each piece of art is made by artists with a personal connection to Parkinson’s, who partner up with people living with the condition to create art that symbolises one of their symptoms. The pieces focus on Parkinson’s ‘off’ episodes, which are the periods between treatment when symptoms re-emerge.
Artist Julie Beezy, known as Julie B. – who created the first piece last month – said: “I was honoured to be asked to be a part of this initiative. I am an artist and create pieces that can reflect many different meanings, so it was very special to create a piece that will, hopefully, help someone communicate something so complicated and emotional.”
“My mother has Parkinson’s. She was diagnosed about 10 years ago but keeps a lot of her feelings and symptoms about her diagnosis private. Working on this initiative really opened my eyes to what she experiences and how important communication is – with not only your healthcare team but your family and support system.”
For the initiative, Julie partnered with Steve Peters, who was diagnosed with Parkinson’s in 2012, and his wife and care partner, Leslie. They created ‘Reflections’ – a sculpture inspired by Steve’s journey with his condition.
Explaining the meaning behind her art, Julie said: “The four silhouettes represent Steve, his wife Leslie, and their two children. The tulip-covered silhouette at the center is a nod to Parkinson’s advocacy and the broader community, which are very important to the Peters family.”
Julie believes art can help people deal with their condition, especially at a time when it is difficult to verbally communicate.
“Sometimes, art can communicate what words cannot. Some aspects of Parkinson’s cannot be seen, so the emotional side of art can better communicate these symptoms. The release this artwork provides, not only creating it but also seeing it, can be beneficial.”
Taking part in the initiative has also provided Julie with a newfound understanding of her mother’s Parkinson’s experience.
“My mother kept things very private,” she said, “and after my experience with Framing OFF Through Art, I realised how lonely it can be. It is important to talk about how you are feeling with your family and care team.
“I hope creating this piece for Steve will help someone else with Parkinson’s live better and understand the importance of communication.”
To find out more about the Framing OFF Through Art initiative, created by US biotech company Acorda Therapeutics, click here.
The sculpture, titled ‘Reflections’, was inspired by Steve’s Parkinson’s journey.
Parkinson’s Awareness Posterboards
In addition to TV, RADIO, PODCASTS, we also had BILLBOARDS around southeastern Wisconsin, and POSTERBOARDS at 34 gyms, clinics and YMCAs across the state!
We also received official proclamations declaring April as Parkinson Awareness Month from Governor Evers, and the mayors of Milwaukee, Madison, La Cross, Wausau and Appleton.
WPA on The Morning Blend!
Jeremy Otte, director of outreach & education, and Dale Luedtke, a musician with Parkinson disease, were featured on The Morning Blend, a morning talk show on TMJ4 Milwaukee. Check it out!
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