Table of Contents
Joan’s Powerful Parkinson’s Stories & Poetry for a Grateful Life Introduction
Welcome to “Joan’s Parkinson’s Stories, Posts & Poetry,” a dedicated corner of LiveParkinsons.com inspired by the insightful and heartfelt writings of Joan, a dear friend who, like many in our community, navigates the daily realities of Parkinson’s disease.
Having witnessed her mother’s journey with ALS, Joan initially faced her own emerging symptoms with understandable apprehension. While her path led to a Parkinson’s diagnosis, it also unveiled a remarkable spirit and an unwavering determination to embrace life fully.
Through her relatable stories, thoughtful posts, and creative poetry, Joan shares her personal experiences, offering a unique window into the challenges and triumphs of living with Parkinson’s.
This page is a testament to Joan’s resilience and her generous desire to connect with and inspire others on their own Parkinson’s journeys.
Joan’s Parkinson’s Stories
Life has a beautiful way of bringing people together, often leading to unexpected friendships and valuable connections. I was fortunate to meet Joan at a Parkinson’s exercise class, and while she initially struck me as quiet and reserved, her inner strength and determination to live vibrantly with Parkinson’s soon shone through. Her commitment to her own well-being and her quiet support of others in the class quickly made her someone to admire.
Our connection deepened when Joan shared that my book, Spectacular Life – 4 Essential Strategies for Living with Parkinson’s, inspired her to share her own experiences through writing.
A gifted storyteller and poet, Joan had been using her creative talents to navigate her Parkinson’s journey. Driven by a desire to offer hope and purpose to others facing a similar diagnosis, she even launched her own website, “Press On with Parkinson’s,” where she shared her heartfelt stories and poems.
While life’s demands eventually led Joan to step back from managing her website, her passion for writing and sharing her journey remained. Knowing the power and beauty of her words, I was thrilled when Joan agreed to share her writings here on LiveParkinsons.com. And so, “Joan’s Genuine Parkinson’s Stories, Posts & Poems” page was created.
I sincerely hope you find as much comfort, inspiration, and connection in Joan’s honest and moving contributions as I do. Please visit this page often to read her latest reflections and poetic insights.
For additional information and articles to help you live a great quality of life with Parkinson’s, visit my Blogs page and to get recommendations on books and exercise gear that I recommend, visit the Authoritative Resources Page.
Joan’s Parkinson’s Stories
Read Joan’s Parkinson’s Stories Here:
The Parkinson’s Tree – May 2025
You may have seen the Parkinson’s iceberg depicting what people see on the surface
versus what’s underneath that remains unseen. While that is a great analogy, personally
I like the idea of a tree and its roots.
For although a tree may appear to be healthy with
green leaves on top, below the ground’s surface the roots may be damaged, lacking
nutrients, oxygen, etc. So it is with Parkinson’s, a person may look good on the outside,
but inside they’re dealing with anxiety, fatigue, constipation, insomnia, etc.
And just as you must focus on improving a tree’s soil condition, address watering issues
and supporting the tree’s overall health for it to survive, so too you must take care of the
unseen symptoms you’re experiencing.
Staying hydrated, exercise, eating properly
along with talking to your doctor about the “unseen” symptoms you’re experiencing can
go a long way in helping you to thrive with Parkinson’s.
The Month of May – May 2025
Ahh, the month of May. My favorite month of the year! For many reasons, both myself
(2 nd ) and my daughter (17 th ) were born in May, the weather is usually pleasant, not too
hot or too cold, the “unofficial” start of summer on Memorial Day and of course Mother’s
Day.
Mother’s Day for me is a mixture of joy mingled with grief. Joy for the blessing of being a
mother and grandmother. Grief because I miss my mother. Even though she has been
gone almost 37 years I still think of her often and wonder what life had been like had
she not passed so young (55) from ALS.
ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease is a
progressive neurodegenerative disease that affects nerve cells in the brain and spinal
cord, eventually leading to loss of muscle control. Some of the characteristics of ALS
are muscle weakness that often starts in the hands, feet or limbs that spreads through
the rest of the body. Difficulty with speaking, swallowing and breathing occur as the
disease progresses.
May is also ALS Awareness month, and I can think of no better way to honor my mother
than to start ta fundraiser for ALS in her honor. So, if you feel so inclined please donate
to help find a cure for this terrible disease.
https://www.facebook.com/share/15NjMGf4Qo/
The Gift of Parkinson’s
I recently listened to an episode of the podcast “The Good Hard Story” that featured
Phillip Yancey an author and journalist who was diagnosed with Parkinson’s two years
ago.
The host of the podcast is Katherine Wolf, a stroke survivor, speaker, author and
cofounder of Hope Heals Ministries. The episode is titled, “Receiving the Gift You Didn’t
Want,” in which they discuss Phillip’s Parkinson’s diagnosis.
https://www.youtube.com/watch?v=2MqMRU75QJI
In addition to the podcast, the magazine Christianity Today featured an article written by
Phillip Yancey entitled, “Parkinson’s diagnosis a gift I didn’t want.”
https://www.christianitytoday.com/2023/02/philip-yancey-ct-parkinsons-diagnosis-gift-i-
didnt-want/
After listening to the podcast and reading the article I felt challenged to view my
Parkinson’s diagnosis as a gift rather than a burden, as well as to use the gift wisely.
Immediately the thought occurred to me that by sharing my Parkinson’s journey with
others through writing in hopes of helping someone else was one way of using my “gift”
wisely.
As far as viewing Parkinson’s as a gift rather than a burden I asked myself what is
something that I wouldn’t have the opportunity to do if I didn’t have PD. The first thing I
thought of was I wouldn’t have the opportunity to be writing articles, posts and poetry.
Writing is something that I have always enjoyed. In my younger days I had dreams of
becoming a writer or journalist but, I didn’t have the confidence to pursue it. So having
PD has allowed me to go after a dream that I thought had died long ago.
God really does cause all things to work together for good to those who love Him. “And we know
that God causes everything to work together for the good of those who love God and
are called according to his purpose for them.” Romans
Another gift I have been given is the gift slowing down. I must admit I’m not always
happy about slowing down especially when it comes to performing everyday tasks.
However, I love that I can take my time in the morning as I have my daily devotions with
the Lord, and I feel refreshed just as He promises in Psalms 23, “He makes me lie down
in green pastures, he leads me beside quiet waters, he refreshes my soul.” Psalms
Also, I have become more compassionate towards those who have disabilities as I have
my own struggles at times. For example, I often have difficulty trying to get money or a c
card out of my wallet to pay for something I want to purchase.
Before I had Parkinson’s I would easily become impatient when standing in line. Parkinson’s has given me the gifts of growing in compassion and patience.
Now there’s one area I differ from Phillip Yancey, and that’s playing pickleball. Recently
a few of us from my Parkinson’s support group got together to play pickleball and had a
good time playing along with a great workout. And we plan to get together again to play.
Also, I did a quick Google search and found that pickleball can benefit some
people with Parkinson’s. https://nationalparkinsonsinstitute.com/pickle-ball/
Choosing to see my Parkinson’s as a gift rather than a burden is an ongoing process
that I am still learning. Some days it’s easier to do that than others but, I am finding
when I make the choice to view it as a gift my day goes much better.
Attitude
Trials in life will surely come your way
Over which you will have no sway
Except this one thing I must construe
And that my friend is your attitude
Circumstances beyond your control
Hard times that will take their toll
It’s up to you how you’ll react
Either distastefully or with tact
Will you be disgruntled and complain
Or get up and dance in the rain
Will you gripe about what you have not
Or be grateful for what you’ve got
Will you continue with habits of old
Or make the changes as you’ve been told.
Will you be a prisoner of your past
Or release those painful memories at last
There will be days you want to stay in bed
With the cover pulled up over your head
It’s in those moments that you must decide
Whether to press on or continue to hide
Through all of the challenges you face
Pray your responses be filled with grace
Take your time, choose what’s best
And your life will surely be blessed
P.U.S.H.
Although I try to stay positive and upbeat about my journey with Parkinson’s there are times when I fail, normally it lasts for only a few hours or a day at the most. Usually all I need is a good night’s sleep along a little extra rest and I’m back to my positive self. However, the beginning of this year was extremely rough, it seemed like no matter how hard I tried to remain positive something would bring me back down. I felt like a mole in a whack a mole game, you know the carnival game where you try to whack the mole back down into the hole with a mallet every time he pops up.
Winter has always been hard for me with its dreary days of gray and long dark nights. Added to that this year were extremely cold temperatures which makes my Parkinson’s symptoms worse. WHACK! In addition to the bitter cold I had an appointment with a new neurologist (my previous neurologist retired) in January that didn’t go well, I left the appointment more discouraged than ever. WHACK!
Also, I struggled for several days with extreme fatigue and very little motivation to do much of anything. It was taking all the energy that I had just to get out of my pajamas and dressed. I tried to exercise to boost my spirits, but I couldn’t do it for more than a few minutes because I easily became exhausted. WHACK! I made an appointment with my primary care physician and found that some of the issues I was dealing with were due in part to a UTI, I was prescribed antibiotics which helped some, but I still felt an overwhelming sense of gloom. WHACK!
In desperation I cried out to God in prayer but, it felt like He was not there, although I knew He was. WHACK! However, I continued to pray and have my daily devotions. Psalms 46:1-3, Psalms 28:7, and Psalms 42:11 were especially comforting to me. Every night before I went to bed, I prayed that I would feel better when I woke up the the next morning. This went on for several weeks until I slowly began to feel better but, it did not happen overnight. Finally, near the end of April the gloom that I had been feeling was lifted.
When you are going through a hard time in life and it feels like God isn’t hearing your prayers the best thing you can do is to Pray Until Something Happens. P.U.S.H. your way through and continue to be thankful regardless of your circumstances. (“Never stop praying. Be thankful in all circumstances.” 1 Thessalonians 5:17-18a NLT). I know this isn’t always easy to do but, I’ve found it works much better than complaining.
Finally, like the mole in a whack a mole game, keep on popping back up!
Teach Us To Number Our Days
Teach us to number our days, that we may gain a heart of wisdom. Psalm 90:12 NIV
Have you ever heard it said, the older you get the faster time goes by? Well, the older I get the more I am finding it is true. I do not know about you but, when I was growing up it seemed like forever until your next birthday came around and I was another year older. Now, it feels like I blink my eyes, and another birthday is here before I know it.
In my younger days I was always in a hurry to get to the next place I needed to be or onto the next task I needed to perform. However, now that I am older and partially due to Parkinson’s I have had to slow down, and I am learning to appreciate the journey rather than just getting to the destination only to start thinking about my next endeavor.
Having Parkinson’s is also teaching me it is best to take life’s challenges one day at a time while simultaneously doing all that I can to delay progression of the disease. I try to keep a positive attitude and not to think about what could go wrong in the future.
As Mark Twain famously said, “I’ve had a lot of worries in my life, most of which never happened.” That is so true, they say 97% of things we worry about never happen. Jesus said it best, “So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.”
Nor do I want to dwell on the past thinking about what I could, should or would have done either. It doesn’t change anything and tends to bring me down. It reminds of one of my favorite Bible verses:
“Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it?” Isaiah 43:18-19a. You can’t move forward when you’re stuck in the past.
Slowing down I have come to the realization that I have more days behind me rather than ahead of me. I want to spend my remaining days wisely along with enjoying the people God has placed in my life. Psalm 90:12 instructs to ask the Lord to,
“Teach us to number our days, that we may gain a heart of wisdom.” And it is my prayer that God will give me the wisdom to make the most of the time that I have left and honor Him in all that I do.” How about you?
When I was young, I was always in a hurry
Seldom was I late but perpetually early
Rushing here and there creating a flurry
Never taking the time to enjoy the journey
But now that I am older, I have come to realize
How quickly life can change and pass you by
If you don’t pause to be thankful and recognize
Every day is a gift to you from God most high!
Proverbs for People with Parkinson’s
The book of Proverbs is one of my favorite books of the Bible, it contains practical wisdom for dealing with everyday situations in life. For example, Proverbs 15:1 gives great advice on how to defuse an argument, “A gentle answer deflects anger, but harsh words make tempers flare.” Recently, as I was reading through Proverbs the thought occurred to me that it would be great if there were some Proverbs for people with Parkinson’s, especially those recently diagnosed. So, after much thought and several rewrites I came up with the following ten Proverbs for people with Parkinson’s.
Number 1: A good attitude is of utmost importance. In my humble opinion, I think having a good attitude is the most important thing in your journey with Parkinson’s. If you don’t have a good attitude, you most likely won’t follow through with the other practices. There’s even a Biblical Proverb that says basically the same thing, “A good attitude will support you when you are sick, but if you give up, nothing can help.” Proverbs 18:14 ERV.
Number 2: Daily expressing gratitude helps sustain a good attitude. Taking the time to be thankful for the things you have and the things you are still able to do, rather than focusing on what you don’t have and are no longer can do helps to set your mind in the right direction.
Number 3: Prayer relieves you of burdens you were never meant to carry. There are times when I can easily become overwhelmed by life and everything that goes along with having Parkinson’s. However, when I cry out to God in prayer He lifts the load that is wearing me down and gives me the strength to carry on.
Number 4: Exercise is essential for maintaining everyday function. Daily exercise is critical for managing Parkinson’s symptoms, it helps with flexibility and has been proven to slow down the progression of Parkinson’s. Although I have days when I don’t feel like exercising, I always feel better when I push myself and do.
Number 5: Socialization is vital to your mental and physical health. Regularly connecting with others and participating in social activities helps reduce depression and anxiety, improves quality of life and can slow cognitive decline. I regularly attend exercise classes and recently started playing pickleball on Wednesday afternoons. I’ve met some wonderful people in both groups who encourage me to keep going.
Number 6: Find a doctor (neurologist) that listens to your concerns. Finding the right neurologist, unfortunately can be one of the hardest things to do. It took me three tries until I found a neurologist that listened to me and addresses my concerns. Keep searching until you find the right fit.
Number 7: Healthy eating and adequate hydration help support your overall wellbeing. Constipation is one of the first non-motor symptoms many people with Parkinson’s experience, sometimes even before they are diagnosed. Eating high fiber foods along with drinking plenty of water can help regulate digestion.
Number 8: Rest and relaxation are crucial for your emotional well-being. Taking the time to rest and relax, slowing down even if only for a few minutes helps you to recharge. There are times when I start to get overwhelmed and have found that getting away from everything for 10 – 15 minutes helps me reset and come back refreshed.
Number 9: Music can work magic when you’re moody. Listening to music always picks me up when I’m feeling blue. Sometimes I listen to praise and worship music, other times I listen to the music that I grew up with from the 60’s and 70’s. There’s nothing quite like listening to the sweet sounds of Motown to turn my mood around.
Number 10: Laughter is the best medicine. (I borrowed that one) Having a sense of humor and the ability to laugh at yourself can go a long way to get through the tough days. There’s a biblical proverb for that as well! “A cheerful heart is good medicine, but a broken spirit saps a person’s strength.” Proverbs 17:22 NLT
