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.
Relaxing Rock Meditation
Has anyone ever told you just relax , take a deep breath, and everything will be ok? Has that been helpful? When someone says “just relax”, it feels harder. You think about relaxing and how you should relax. This causes you to tense up and feel more tension in your body. You tell yourself to relax, but your muscles are now tight and sore. Why is this so difficult? I find that guided meditation and yoga helps me relax and breathe deeply.
Here is a link to a guided meditation that I find particularly helpful. It’s only 15 minutes, so you can relax in a short amount of time. Enjoy!
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.
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 meets via Zoom on the third Thursday of the month at 5 pm. 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.
New Path
Which path do you see, Look ahead or behind. I see a new footpath, I may travel on. The new course is drawn. Someone whispers my name. Calling so softly, Please stroll this way. There's a lake in the distance, time to follow a trail. I dip my toe in the water, to see the reveal. I lift my toe from the pond, no lingering here. Contemplating the future, wondering what can be. Feeling comfort and calm, I sense I'm not alone. A spirit walks beside me, She whispers you are strong. I've accepted the journey, with gratitude and grace. Stepping lightly, gently gliding, finding my new pace. There's a light glowing brightly, footprints imprint the dry land. The trail blazes brightly, Revealing the new stance. I review the last journey, the guide nudges me on. confident, I step forward. singing a new song.
Being prepared for the hospital
COVID has continued much longer than any of us anticipated. How many of you have discussed hospital logistics with your loved ones? COVID has caused hospitals to restrict visitors. If you take a family member to the emergency room you may be asked to wait in your car. Some hospitals are beginning to allow visitors, but only one per day.
It is important to be prepared for a hospital visit, even if you do not have plans to be in the hospital. Pack a bag or backpack as if you were going to the hospital. Here are things you should include in your bag :
- Current medications
- Medication list by name (multiple copies)
- Medication list by the time (multiple copies)
- Copy of Living Will
- Copy of Durable Power of Attorney for health care
- Paper and pen
- Sweater
- Change of clothes
- Parkinson’s Foundation Aware in Care Kit.
- Paperback book
The Parkinson’s foundation created a hospital kit, called the Aware in Care Kit, which is free and available from their website. You will find the following things in the kit: fact sheets for the nurses, a hospital action plan, a medical alert card and bracelet, and a medication form. This kit is invaluable to you and the medical staff. The nurse fact sheet shows which medications are harmful to patients with Parkinson’s. Take one sheet and stick it in your wallet. There is an online form to fill in with your medications. Enter your information in the table and print it out. How easy is that? The link below will take you to the page where you can order your kit for free. I have not seen this information anywhere else. Order yours today.
Last, but not least, be your own advocate. Speak up if you did not receive your medications or they were not given on time. Let the nurses know if there is a problem or you are feeling worse. Your partner/spouse/friend may not be with you to advocate on your behalf. Speak up, speak out. Use your voice. Your goal is to get well, so you can return home to your family.
Advocate for Parkinson’s Now!
Have you read the book Ending Parkinson’s: A Prescription for Action? If you have not, you should read it this week. Dr. Ray Dorsey along with several other authors are taking action to advocate to increase Parkinson’s funding. Specifically, they have initiated a campaign to ask President Biden to increase the federal research funding for Parkinson’s, which is quite low.
If you register on their website, they will send you a letter that you can customize and then send to President Biden. It’s written, you just have to sign and mail. How easy is that? In addition to asking for increased research funding, the letter will ask President Biden to ban chemicals such as paraquat, chlorpyrifos, and trichlorethylene, which are in pesticides and increase the risk of Parkinson’s disease. Lastly, it will encourage the President to make Medicare’s coverage of telemedicine visits permanent.
There is also a live event on March 16th. I’ve placed a link to their website below. Please take a few minutes to read the information on this website. It is so important to participate in this campaign and to send a letter to the President. This is a chance to voice our concerns about research funding for Parkinson’s. We need a lot of people to send letters to make an impact. Please take a look at the website and register. Thank you for helping advocate to increase Parkinson’s research funding.
Inside Parkinson's 