If you are new to my blog or haven’t spent much time here, you might not realize that in 2018 I was diagnosed with Parkinson’s Disease. I generally don’t write about it because, thankfully, it hasn’t had to, nor do I allow it to, take center stage in my life. Today I have decided to write about it because April is Parkinson’s Awareness Month.
I’m going to start by sharing a link to the Parkinson’s Foundation website where you can learn a lot about the disease.
Since I do not use social media, other than my blog, and I don’t watch much news I’m not really certain how much awareness is being spread. Today I’m going to share a brief story as an example of how more awareness may benefit me and perhaps others with PD. Since every person with Parkinson’s experiences it differently I will do a future post to tell you more about my PD story.
Please Don’t Misunderstand Me
I need to preface this story by explaining that at this point my main Parkinson’s symptom and the only visible one is tremors. I am blessed that my tremors do not affect my limbs but are only present in my head and very, very slightly in my hands. Unfortunately, these completely involuntary head tremors, that at times I am not even aware are occurring, are often mistaken for a form of communication. They have in the past been interpreted as; shaking my head “No”, shaking my head in disgust, frustration, or anger, and one time I was asked if I was cold because the person thought I was shivering.
Most recently, I was shopping at our local dollar store. The store was not busy and there was only one person in front of me in line and no one behind me. The person in front of me finished paying and walked toward the exit, and the cashier began ringing up my items. As the person who had been in front of me in line was walking out, he stopped and asked the cashier if the carried powdered sugar. The cashier said “sometimes we do but I’m not sure if we have any. Let me check.” As she quickly left the register, the person said, “no, don’t bother. She’s shaking her head.” I’m not sure whether he thought I was indicating that they didn’t have the item, or that I was upset because the cashier had paused her service to me in order to attend to him. I attempted to explain to him that the tremors were involuntary and had nothing to do with his interaction with the cashier, but he didn’t seem to acknowledge me.
The cashier was back in a matter of seconds telling him they did not have what he was looking for. After he left, I told the cashier that it is frustrating when people assume that my tremors are something that they are not. I explained that the tremors are caused by Parkinson’s, and she understood, telling me that she thought that someone she knew was in the early stages of this disease.
In a day and age where people are highly sensitive and quick to react to a perceived offense, I often fear that someone, not understanding my condition, may take offence. I am sharing this story with you today because promoting awareness of Parkinson’s and perhaps wearing a button or clothing with the below emblem on it are the only things I can think of to help prevent these kinds of misunderstandings.
Please feel free to share this post and help promote Parkinson’s awareness.
Thanks for reading.
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Kim please let go of the guilt you feel. You did everything in your power to give him a good life. I know as caregivers we can feel responsible for others lives and wellness but there is only so much we humans can do and then we put it in God’s hands. Once we do that we have to accept that God knows and does what is best. I understand you are still going through the grieving process. Denial, anger, bargaining, depression and acceptance can all be part of that but you should not feel guilty at all. Thanks for the prayers.
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I’m so sorry you had those kinds of experiences. My dad had Parkinson’s but his head didn’t shake. His arms were the major tremors were, so bad he could barely eat. This is a very sensitive subject for me, because I recently lost him. He was in denial, but went along with me trying to get him diagnosed and properly treated. The fact that he had a severe shoulder injury kept me guessing if the drs were right, but he had every test in the world, and they all agreed he had it. He also had aphasia, lost his voice, and his hearing was very bad. Being his caregiver was frustrating but I loved him and still can’t believe he’s gone. I carry so much guilt thinking I did something wrong along the journey, but in reality, we all did the very best we could. He went through so much, speech therapy, weights on his arm, test after test, medication, physical therapy, it all wore him out. He was in his eights so they would not consider the DBS for him, but I was convinced it would stop the tremors that medication never did. I pray that your journey is much easier than his was, because research brings new options as they learn more about it. Thanks for trying to create more awareness. ☺️
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Thank you for sharing, Ruth. God bless you.🌷
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Thank you, Mitzy. I am blessed!
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This was a very interesting post Ruth. I was aware of your Parkinson’s diagnosis from a prior post and I have to agree with you about the tremors possible looking like you are shaking your head in frustration or disgust at someone when you are not. I would seriously think of getting a button of some type for when you go to a crowded area, for your protection. I know you say you are not listening to a lot on the news, but there is too much craziness going on right now with people and their attitudes toward others. People mistake a look or a gesture as a personal affront. It’s a shame you have to do that, but sadly, people are not as kind toward one another as they once were.
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Normally I wouldn’t pay attention to what others think of me but is that craziness that concerns me. One thing I do try to do is smile at anyone I make eye contact with, in hopes of counteracting any impressions they might have from my tremors.
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Like you, I have no concerns what people think of me either Ruth, but it difficult to be your own person in this day and age. Everyone is so touchy these days and seem to be itching for a fight just because they misinterpret something. People have no right to comment on your tremors either … I just don’t understand people anymore.
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Thank you for sharing. It’s always a good reminder that people should give others the benefit of the doubt rather than immediately taking offence. I’m glad your PD is still very manageable 😊
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Thank you. I am blessed.
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You are a warrior. You have taken your bull by the horns and not let this affliction get the best of you. You are an inspiration. You have a beautiful message that the world needs to hear. Every one of us has something we struggle with. Ephesians 4 23 tells us ” Be kind and compassionate to one another ” The world would be a better place if more people would remember that.
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You said this perfectly.
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💞
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Thanks K.C. I think it’s by the Grace of God that I am where I am today. I’ve also had some wonderful role models. 💞
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Thank you for sharing this. I was not aware that April was the awareness month for PD.
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You’re welcome. I recently learned it myself.
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Glad you are doing okay Ruth! I read the other day about a new blood test they can do to help with or even predict the diagnosis, but as it involves a spinal tap I’m not sure I would want to do it. I don’t think it’s been approved yet, but might help in designing new drugs for PD. I googled it.
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Thanks Joni. If it could actually diagnose PD it would be worth it. The DaT scan that I had for diagnosis was horrible. My head had to be strapped down and I was told I could not move my head at all during the 45-minute test. I explained that I can’t always control my head movements, so she strapped it extra tight. I had the worst headache ever by the time it was done.
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My Dad had Parkinson’s. It can be challenging to live with – but everyone’s experience is unique …
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It can be challenging for loved ones and caregivers as well. There’s a lot of trail and error since something that works for one person doesn’t help another. Thanks for stopping by and leaving a comment.
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I am greatful that you shared this. I was not aware that Parkinson’s had an awareness month and until recently thought it was a rare condition. You are such an amazing role model in how you take care of yourself and how you handle Parkinson’s. I hate that you would feel self conscious or concerned that someone might become offended by a misunderstanding.
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It was just recently that I learned about PD awareness month I did however know that it is becoming a more common condition. It’s funny that you mention me as a role model as I often think of a couple of wonderful people with disabilities that I have known as role models. The first is Grandma Morrin. The second my friend Gigi. Both Inspirational people.
Sadly we live in a world where people can be quick to react at perceived offenses and sometimes misunderstandings can turn ugly. I try to at least be aware of how I am perceived so that I can perhaps avoid any misunderstandings.
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A dear relative of mine has been diagnosed with PD. She is dealing with it courageously. I’m going to send her a link to this post.
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I probably struggled most with the initial diagnosis. The disease, causes, symptoms, and treatments are unique to each person but many people, including myself, continue to live full lives for many years after diagnosis. I am five years post diagnosis and actually better today than the day I was diagnosed. The medical community was not much help to me after diagnosis as they told me that there were no medicines that would help with the type of tremors that I have but I have found some alternative treatments that seem to be helpful. I pray that she does well and would be happy to chat with her if she cares to.
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Thank you for your kind offer. She spoke of all the treatments available, so it sounds like her doctors were very supportive. She did say there are many more options now than there used to be.
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It’s wonderful that she has supportive doctors. I hope she/they can quickly find the treatment that is best for her.
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