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.
Symptoms
Rigidity
I feel inspired, and am taking advantage of this feeling by writing. Recently, I discovered the differences between stiffness, rigidity, and dystonia; they are all complicated. These three symptoms bring severe pain and movement becomes difficult. This knowledge is not something I searched for. It came to me, during the night. Trust me, it really isn’t something I wanted to learn. My doctor made adjustments to my medicine and things are looking up. Thus, inspiration! YEA!
Some mornings I wake up and find my body to be stiff and rigid. This really hurts, which leads me to exercise. I found an excellent video that focuses on moving through rigidity in Parkinson’s. The instructor is Lauren Lewis and she makes it fun. She combines numerous exercises, which reduce stiffness and rigidity. Lauren is motivating and has fun with the music. After doing a few sequences, my arms do not feel stiff and my legs are moving. My body feels free and loose again, and I completed the entire video. This video will help people who experience stiffness and rigidity.
Power for Parkinson’s is a non-profit organization whose mission is as follows:
Our mission is to provide free fitness, dance, and singing classes for people with Parkinson’s Disease and their care partners in the Austin, Texas area and around the world. We aim to engage people with Parkinson’s in regular exercise to slow or even reverse the effects of PD, improve their overall sense of well-being, provide opportunities for socialization, and help prevent depression and isolation that often accompanies the disease.
The exercise videos on this website are FANTASTIC! They target specific symptoms like rigidity and balance. Take some time to check out this website. I know you will enjoy these videos.
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.
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.
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.
Dystonia
I never understand what brings on the symptoms of Parkinson’s. Recently, I began curling my toes and feet which causes pain and tense tight calves (a symptom known as dystonia). My left foot is especially affected. I decided that maybe a new pair of shoes would help, so I went to the Up and Running store in Kettering, OH. I walked into the store and a friendly person greeted me. She totally understood my issue when I told her my problem with my toes and feet. She explained how the shoes I was wearing could be contributing to the pain. WOW! Is it really that simple? She showed me a pair of shoes with a platform that was flat and did not angle towards the toes. This relaxes the foot, which results in less pain. I tried on a new brand of shoes and felt like I was walking on a cloud. I began jumping and bouncing because they felt so good. Who would believe that I was wearing the wrong shoes for curling toes? It makes so much sense. I, of course, had to buy the shoes. They are so awesome! I’m back to taking walks again without my feet hurting. If your feet don’t feel good, you don’t feel good. That is the truth.
Thank you to the Up and Running store, they really made a difference in my feet and my walk. I am not in pain anymore and am very thankful.
Relax and just Sleep
Parkinson’s can bring many different symptoms in the body. One of my recent challenges is sleep. Sleep does not come easily to me or many people with Parkinson’s. There are a variety of methods to help you prepare for sleep. One method requires that you do not view any computer or television screen two hours before bed time. I have some internal resistance towards these methods. I want to complete tasks before bed, lay my head down and sleep. That’s been my habit for years. I am discovering that relaxation before bed time is critical. Washing dishes or putting away laundry is not relaxing. Taking a bath, doing a jigsaw puzzle, reading or journaling relaxes me. No television or cell phone 1-2 hours before I lay down to sleep. I will confess, no screens two hours before bed is not always achievable.
After resisting this change for quite some time, I’ve finally started relaxing before going to sleep. It is not a terrible thing to begin relaxing before bed time. I sleep much better now. It’s not totally perfect and I get up way too early. This is definitely an improvement. So yeah, that’s a win!
Inside Parkinson's 