Tired of being tired Wake up every dayCheck my feelings. Check my body. How do I feel today? How does the body feel? Am I well? Am I rested? Am I shaking? How do I feel? Many mornings, I am tired Sooo tired. Remaining for the morning, Sometimes the entire day. I don’t know why. Finding it hard To do anything, To exercise To think To reason. Sleep That is all I want. Sleep all-day Sleep all night.Each night I wonder, Will tonight be the night. Will I sleep Or stay awake? Tiredness. Affects me all-day No desire to do anything. No desire. Taking sleep for granted. Please, just let me return To the sleeping days. Frustration rising inside me Please let me go back. To the days before I had this disease. What to do When I am so tired? Do I fight to continue Do I rest? I need a way through. Sleep must come. It is essential to life. Not enough sleep, Affects everything. Thinking stops, Moving feels like Walking through the mud. SLEEP. ALL I WANT IS TO SLEEP! Please may I have peace tonight And a good night’s sleep.
Parkinson’s
Looking Back
I have had Parkinson’s for 7 years now. I was diagnosed in July 2014. I will never forget that day. That was not a good day. I went to see a Movement Disorder Specialist a month later. In the beginning, I learned about the medicines and worked with my doctor to find the correct balance of medications. It took at least six months to get the symptoms under control.
Now, I look back at the seven years and a lot has happened. I was employed until I became ill in 2019. Then COVID hit in 2020, throwing me into unknown territory. I was adjusting to staying at home and my husband was adjusting to my being at home. Then, there was the pandemic. None of us knew how to handle that.
Recently, I experienced some minor progression in my symptoms. This has caused me to look back at the last 7 years. My Parkinson’s symptoms varied over time. Sometimes, I think that all my hard work and exercise will keep all the symptoms at bay. It’s hard to accept that they will keep changing. I do find that exercise slows down the progression of the disease. It does not stop the symptoms from changing.
I share all this to encourage you to exercise. Exercise will make you feel so much better. When I am feeling at my worst, I exercise. I go for a walk, dance, practice Zumba, or yoga. It absolutely makes me feel better. My symptoms lessen or completely stop when I exercise. That is so worth it!
Parkinson’s is definitely a journey. The path forward is unknown, and every day is unpredictable. Isn’t that true for everyone? I try not to look ahead and worry, so I have a goal to live in the present moment. That is all we really have.
All I know for sure is that exercise is the key to a healthier life, no matter who you are or if you have a disease. Exercise makes you feel better, look better, and slows down your Parkinson’s symptoms. I know that you too can do this. Get up and move!
Celebrate!
Today is my celebration! One year ago, during the world pandemic, I launched the Inside Parkinsons website.
I recall the feeling that morning as we launched the site! There was excitement in the air. I took a risk, and I believe it paid off. I didn’t know how people would respond to my blog posts. I wasn’t even sure I could come up with enough to say for a blog post. As you can see, I have plenty to say, and all of you have been so responsive to my posts.
I started this website so that I could help people with Parkinson’s.
In 2014, I was diagnosed with Parkinson’s. I was in shock for several months. I think everyone goes through shock and denial when first diagnosed. Early on, I started exercising and discovered that it made me feel better. I could even miss a dose of medicine if I were exercising. That was amazing! I researched articles and webinars about Parkinson’s. I am a retired Librarian, so this came naturally.
In 2017, I met Chris Gaffney from Parkinson’s Support & Wellness. We began conversing, and the next thing I know, I’m starting a support group. I named the group Working with Parkinson’s because I was still working at that time. Today I see our group as working through our Parkinson’s journey. Most people in the group are retired. I learned that I had a gift and could share information about Parkinson’s with others. People were very responsive to what I learned and shared. Our group has survived COVID by meeting on Zoom. We’ve become a great group of friends, and I’m so happy to meet with them each month.
My Parkinson’s Doctor approached me in 2018 about giving a talk at the Sunflower Revolution Symposium. I agreed and spoke to a large number of people. I shared my story and talked about exercise slowing the progression of Parkinson’s. I did not know it then, but that presentation was the catalyst for this website and any lectures or talks that I have or will give in the future.
I realized that I had something to say, and I wanted to encourage people to exercise and move. I was amazed at how much exercise can make you not only feel better but stop or slow down your Parkinson’s symptoms.
Now, we move to the end of 2019. I was recovering from a year of illness and adjusting to being retired. COVID hit in 2020, and I was getting ready to host a large retirement party, but unfortunately, I had to cancel because so many people were becoming ill from COVID. I did not want anyone else to get sick because they came to my party.
I participated in a Vision Board workshop with Melissa Kirkpatrick in June 2020. My vision came to life when I met her. I knew I wanted to reach people and share what I’ve learned about Parkinson’s. Our discussions led to the decision to create this website. Building a website would help me spread my message and be an information source for future speaking engagements.
In September 2020, I launched the website with the help of my husband and Melissa. That was an exciting day. We got up early and dressed for the occasion. We watched as family and friends responded with great enthusiasm. The website has expanded this year beyond family and friends. Several of my blog posts are on the Parkinson’s Support and Wellness site.
Every other week, I write about a topic related to Parkinson’s or any current issue on my mind that refers to people in general, not only those with Parkinson’s.
Last winter, I discovered my gift for writing poetry. A poem entitled Living Inside the Body, which I quickly wrote, felt like a gift, and I published it in February 2021. I continue to write poetry and hope to post more on the website.
Now, I am looking ahead to see what my future holds.
The website has become a part of me and is a great avenue to share my thoughts and ideas. I look forward to expanding the range of this website and reaching more people.
I am sure I will be writing more poetry, and I am currently working on a program for the spring on Healing through Journaling.
If you have an idea for the website or have a question, you can comment through the About page or message me on Facebook,
Thank you for your continued love and support.
Swimming
Today, I decided to go for a swim at the YMCA. It’s a new part of my exercise plan. I was at the gym by 8 am. Swimming felt good, everything about it felt wonderful. My arms and legs gliding through the crystal blue water. I was aware of how my body moved through the water. How high to keep my legs up, which way to breathe. It was quiet. A peaceful quiet. At that moment in time, I was free. Free to think, free to feel. Free from Parkinson’s, free from any troubles or worries. Just me and the water. Gliding through the watery space.
When I was swimming I thought about the Olympic athletes. Each swimmer moving their arms and legs, pumping, pulling, moving at their top speed. Each person striving for Gold. I pretended I was an Olympic swimmer, hoping to win the gold. I don’t know if I swam faster, but it felt amazing. I imagined that I was driving my body, racing toward the finish line. Of course, I won the Gold!
When I went home, I did have to take a short nap. I find a 20-30 minute repose is all I need to restore my energy. Swimming wore me out, but it was gratifying. I woke up refreshed and was ready for the rest of the day.
That night I experienced a deep sleep, unlike any other night. I slept about 7 hours and had a very deep night’s sleep. HALLELUJAH! I only woke up once and slept for several more hours. This experience causes me to believe that I need to work out intensely and with intention every day. This will give me the sleep I need at night. It’s a bit of a bummer because there are days, I do not want to work out, or I am simply tired. I am discovering that exercise is the key to everything.
Internal Movements
Inside the body, there is movement, Movement you feel. Seeing consequences, Due to lack of dopamine. Maybe a tremor, Maybe slowness, Maybe the body freezing, Maybe shuffling feet. Exercise is the secret, Living with Parkinson’s. Make big movements, Reach far, stand tall. Never understanding Swinging arms, giant steps. Until now. A wave of sensation Traveled through my body. Today, I felt and understood. I perceived a new awareness. Internally, I sensed, The body curling in upon itself. The body folding over , Squeezing the organs, the muscles Holding on with all its might. Internally, the body urges you to be still. Trying to take hold of your movements. Trying to make you freeze. Trying to stifle you. The internal draw of Parkinson’s is strong We can be stronger. We can move. We can walk. We swing our arms high. We take long giant steps. Walk tall. Swing your arms. Stand up straight. Walk with a bounce and lift. Resist the desire to slow down. Counteract, the drive to be still. In the stillness, there is no movement. Without movement, you become a statue. Just keep moving. Combat the internal tug. Make a pledge to keep moving. Defy the desire to be still. Yes, the fight is difficult and long. This is the battle we must soldier on. Our struggle, our journey Must not be wasted Must not be in vain.
Blue Light
Did you know that our cellphones, computers, and other electronics emit blue light and this blue light can keep you awake at night? If you are having trouble sleeping at night, you may want to put your electronic devices away for the night.
The reason for putting away our electronics at night is significant. Blue light is emitted from all our cell phones and electronics. Humans were not meant to stay up all night, they should rise with the sun and rest in the dark. Now we have electricity, cell phones, computers, and televisions. All of these electronics expose us to blue light. This restrains the production of melatonin, which controls your sleep-wake cycle. If you interfere with the production of melatonin, you will not sleep well.
I recently had difficulty sleeping at night, partly due to looking at my cell phone. I started a new practice which involves stepping away from the electronics two hours before bedtime. This has turned out to be enjoyable because I spend that time relaxing, sitting outside, reading, or doing a jigsaw puzzle. I am sleeping much better and some nights, I even sleep through the entire night. Love those nights.
Good sleep hygiene is a common practice to help someone get a good night’s sleep. I intend to carry out the steps for good sleep hygiene from now on. Part of living with Parkinson’s is that you need to be disciplined and consistent. When you go off your routine or regimen your symptoms return. It’s unfair, but that’s how it is. It takes determination to do the necessary sleep hygiene routine needed for a good night’s sleep.
Here is an article by Harvard Health Publishing about the blue light being emitted from electronics. That blue light literally is keeping us awake. If you look at your cell phone at night you are throwing your circadian rhythm out of whack. If you are having trouble sleeping, you may want to evaluate what electronics you are looking at two hours before bedtime.
Stillness
Be still,
Listen,
What do you hear?
A voice softly calling.
Calling my name.
Be still,
Listen.
In the silence, golden silence,
Find your spirit and your soul.
Be still,
Listen.
The silence is sacred.
It tells no lies.
Be still,
Listen.
In the silence, golden silence,
A vision will appear.
Be still,
Listen.
Be still in the silence.
Hear the message from within.
Be still,
Listen.
Discover your purpose.
Find your new song.
Be still,
Listen.
Grateful for the silence.
You can see what's real.
Be still,
Listen.
It's in the silence.
You will see, hear and feel.
In the silence,
the golden silence,
You see the vision,
You now know, you can travel on.
Managing Non-Motor Symptoms
Do the non-motor symptoms drive you crazy? That’s the stage I’m in right now. If my toes aren’t bothering me, then I have too much saliva. If that doesn’t bother me then I’m not sleeping, and that bothers me. It seems like I get one thing settled down and another one starts. I just want to be free of this disease. It’s excruciating and painful. At the same time, my tremor is under control. My tremor rarely bothers me.
Symptom after symptom appears. They are enough of a bother that I need to address them. This makes my life full of addressing medical issues, daily. I did not sign up for this. I know, I know, there are others much worse than me. I’m saying I want off the merry-go-round right now. Parkinson’s just sucks and I don’t want any part of it, anymore. This is not a choice, I know. So, how do I get around this? How do I make it better? I want to scream and run away! The only problem with running away is that my Parkinson’s will still be there.
I want someone or God or somebody to make this just go away. It’s just not possible. I’m having trouble facing the reality. I don’t see a way to make this better. Sure there are things I can do. I can put toe spacers to help with my toes. I can exercise and take more medicine. Sometimes the medicine causes me to get short of breath. That’s crazy! Sometimes the meds cause dyskinesia and make me sway. I hate that!
I just have to realize that this is my reality and I cannot make it go away. I know that I can work on relieving the symptoms, however, accepting this disease is a continual process. I find it difficult. I have a great team of doctors who help me navigate my way through the multiple manifestations of Parkinson’s. I just wish I could make it go away.
Living in the Moment
The Disease Are you talking? I’m not listening, What do you say? Symptoms so varied Comes any night and day. So unexpected, Why are you this way? Oh my Parkinson’s How can this be? Never knowing what’s coming Give me the key. Every symptom so different No pattern to see. Why does a new motion Bring me down to my knees? Needing acceptance Not easy this time. Looking ahead, Not wanting to climb. Explore the feelings, Find the good in the bad. Leave the sorrow behind, Or you will go mad. The journey continues Could not walk away. Finding acceptance, By writing today. Moving forward. Going to live for the day. I look in my pocket Finding courage packed away.
Reader’s Theatre
How many of you have voice issues which result in a voice that cracks, shakes, and is raspy? Would you like to improve that? Research shows that 89% of people with Parkinson’s will have issues with their voice. Exercising your voice will help your voice remain strong. I belong to a Reader’s Theatre group that reads scripts together out loud. The scripts are light-hearted and funny and we take turns playing the different characters. It is organized by my good friend Marilyn. She does a fantastic job at picking the scripts. Before COVID we were meeting at the NeuroRehab and Balance Center in Miamisburg and now, we are meeting through Zoom. It may be a little challenging, but we always make it work.
Anyone who has Parkinson’s is welcome to the Reader’s Theatre. Our group will be meeting on a different day in May. We are meeting, via zoom on Wednesday, May 19th at 5pm. I really hope you will come and see what we are all about. This is a chance to use your voice and connect with others at the same time. It’s a lot of fun. Please email Marilyn Klaben at marilynklaben@gmail.com.
Inside Parkinson's 