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.
Feelings
Walking in gratitude
Today, I am walking in the sunshine.
Today, I soak up the golden rays,
Today, walking is a pleasure.
Today, gratitude fills my soul.
Today, I remember,
Walking is a gift.
My feet carry me, urging me forward.
Today, all is forgotten.
How large are my steps?
Am I standing tall or am I bent like a flower?
Today, I pause and breathe, soaking in my exceptional gratitude.
Today, I walk
for the pure pleasure of walking.
Today, I walk with grace and gratitude
Pausing to breath,
The beauty of the field
makes me smile.
Another pause,
another breath,
remembering,
gratitude is everything.
Telling it like it is. May 2022
You may have noticed that I have not written or published anything for a few weeks now. I am having a difficult time with nasty, all time-consuming Parkinson’s symptoms. This is causing a pause in my life. The body is demanding attention and I must attend to it. I was encouraged to write about my current experiences with Parkinson’s symptoms, so here it goes.
My body is reacting to something, God knows what it is. Internally, there is a struggle and it is manifesting itself through a myriad of symptoms. Dyskinesia and dystonia. I did not know or understand these words until recently. Now, I know that dyskinesias are dance-like movements of the limbs. My toes have decided to become dancers. I cannot convince them to stop. They dance any time they want, day or night. They wiggle and twitch causing ligaments to carry the tune, twirling up the legs.
Dystonia. I hope it’s a word you never know. It is a painful tightening, and cramping of the muscles. It often begins in the feet and generally travels up the back body and lands in the neck. These are the symptoms I hate the most. The pain Dystonia causes pauses my breath. When I feel the cramping start, I hurry to begin the steps I’ve been taught to work through this. I try to stop it before it travels. Sometimes, it works and sometimes it doesn’t. Dystonia simply travels way too fast and nothing in the world is going to change that.
My entire day is spent responding to the invasive attack on my body. Dyskinesias and dystonia are maddening. They can break even the strongest soul. The recurring pulses and motions tire a person.
To keep this from taking over, I must move and be physically active several times a day to combat the pain. I take giant steps. I walk the treadmill. I walk the local parks, and I do yoga. Yoga is my favorite! All of these things help open up the body. The body, a Parkinson’s body, wants to curl into itself. It’s like your body wants to crawl into a fetal position, inside and out. You feel like you could just curl up and die.
I fight. I won’t let whatever this is, win. I fight with a large network of professionals, family, and friends. All of them offering their support. Every one of them encourages me, listens to me, and holds my hand. I could not go on without such support. I am so grateful to all of you who are a part of my network and my life. You all are there for me when I need you. I am forever grateful.
My husband, the love of my life, shows his strength during this time. He gently holds me, encourages me, and reminds me to move. He whispers that everything will be alright. I listen and know that for that moment in time, everything is fine.
Pause and breathe. That is the theme this week. I pause and breathe before taking an action. Before taking medicine, I pause and breathe. That gives me a chance to be in the present moment and check my work. Throughout my day, as I prepare to take on an action, I will pause and breathe. It helps me focus and be aware of the action or task I am about to perform. Pause and breathe. This helps me be present, at that moment, that time. Pause and breathe. We should all take this good advice, pause, and breathe.
I keep asking and hoping for a magic pill. One magic pill to make this all go away. Deep down inside, I know there isn’t one. I look to my future and do not like what I see. It looks like a life of pain and misery. So, I keep hoping and praying that one day someone will turn to me and say, hey here is the magic pill. Make Parkinson’s go away!
My pen is slowing down. Words are not tumbling on the page.
I feel some poetry coming from all the feelings, I have been gathering.
Pause and breathe, live in the moment. Hopefully, there will be peace.
The Right Stuff
One of my family members fell off a cliff by the ocean a couple of weeks ago. His injuries are numerous including skull, back, and neck fractures. We were all worried that maybe he would not be able to walk or resume a normal life. He fooled us and walked out of the hospital two days after being in the ICU. The nurse said that in 33 years she had not seen anyone walk out of the hospital with that many injuries. He decided that he was going to be alright and would heal fast. He says he is fine. He is optimistic and full of hope. He has the “right stuff” for healing. He has a great and positive attitude.
I was thinking about attitude during this time. When you first hear that you have Parkinson’s Disease, your heart sinks. Your emotions range from sadness to depression to denial. Once you get through that, you have a decision to make: how are you going to handle this in your daily life? Parkinson’s is a life long disease, so you must look ahead and decide how you will handle managing your disease.
According to the Parkinson’s Disease in America 2018 study, significant numbers of people diagnosed with PD lose hope and find their emotional well being derailed. Over 50% of those surveyed report being quite a bit, or very, sad or nervous. Nearly 70% report a significant loss of hope. They fear mental health issues and a general dip in emotional well being. Although it is normal to experience a loss of hope or bouts of fear about what the future holds, keeping a positive attitude, and maintaining an upbeat outlook can make life more enjoyable. This approach is actually beneficial for everyone, whether or not they have Parkinson’s, or care about someone else who does.
Staying Positive When You Have Parkinson’s · October 23, 2018
Here are some things you can do to remain positive:
- Listen to music
- Call a friend
- Focus on what you can do
- Create a gratitude journal
- Be compassionate towards others
- Help someone in need
- Exercise
My very favorite thing to be positive is exercise. This makes me feel so much better. I practice some type of aerobics or yoga six days a week. I have gained strength and balance. Exercise will reduce your Parkinson’s symptoms and slow down the progression of the disease. I am also a volunteer for a Parkinson’s non-profit organization. Meeting others who have Parkinson’s enriches my life and helps me get through the tougher times. It helps to know that I can call someone who understands.
The young man that fell is doing fairly well. He returned back home and is resuming his normal life. He may not be doing everything he used to, but he is up and moving. The message for today is to think positively and think happy thoughts. You will be surprised at how much it helps.
Hope During COVID
Hope. Let’s talk about hope. It is not something we usually talk about. We say we hope you feel better, we hope you have a better day tomorrow. Hope is an internal feeling that you find in the core of your soul. Hope is a mindset that gives you the ability to face another day. Hope can lift you when you are feeling down or your physical issues are difficult to handle that day. There are times when you need to find hope externally. You need someone to let you know you are strong, you can get through the difficult day or moment.
I know some people who have little hope. They think Parkinson’s stops you from doing anything fun or being physically active. I’m sure you have heard we are headed for a “dark winter” due to COVID 19. During this time, we must have hope. Hope that the bad days won’t be so bad and that the dark times will turn to light. We must hold onto our hope that yes, we can get through another day. We must hope that the “dark winter” won’t last forever. There will be an end and we will see the light soon.
When we get down or have difficult days physically, we must look for hope and believe that tomorrow will be better. Here are a couple of suggestions to help you through the dark times.
The Parkinson’s community is large, and the people are so nice. Reach out to any Parkinson’s group that interests you. The Parkinson’s Support and Wellness website list all the Parkinson’s support groups in the Cincinnati, Dayton, and Northern Kentucky areas. There will be people who have first-hand knowledge of what you are going through. They will support, listen, and commiserate with you.
There are also many online activities for people with Parkinson’s. From the Parkinson’s Foundation site:
The Parkinson’s Foundation is dedicated to bringing the Parkinson’s (PD) community virtual educational and wellness programs through PD Health @ Home. As some of us continue social distancing, we do not want members of our community to emotionally isolate, which is why PD Health @ Home provides weekly online events
I’ll leave you with a quote from Thomas Merton who was an American Trappist monk, writer, theologian, mystic, poet, social activist and scholar of comparative religion. His book The Seven Storey Mountain was his account of spiritual journal. It is among the National Review’s list of 100 best non-fiction books of the century.
Word of the Week: Acceptance
Acceptance is my word of the week. As we grow older, we need to accept more and more. More circumstances. More symptoms. Non-acceptance will bring you misery. Parkinson’s symptoms come and go. Some may stay with you forever. Some will be temporary. There are times when I find it hard to accept a new symptom. It’s especially hard, if this symptom makes you uncomfortable or brings pain. Parkinson’s is complicated and it’s difficult to understand all of its symptoms. Sometimes, it makes sense why the new manifestation of something physical is happening to your body. Other times, it is baffling.
When I was first diagnosed, I had a tremor in my right hand. I thought that would be the end of it. I thought medication would make everything alright. I was wrong. As I write this, I realize acceptance is not stagnant. You must accept yourself as you are and move on. Parkinson’s may push you, further than you wanted to go. However, you will grow. If you learn to accept things that are hard, things that you do not want to accept, you will find a quiet serenity. To find peace and harmony you must accept what Parkinson’s brings you. Accept yourself for who you are today. Not yesterday, or tomorrow. Accept yourself as you are today.
Inside Parkinson's 